Brave as a Tiger, Strong as an Ox

YOU'RE WELCOME FOR THE CANCER

2006-11-09T14:19:00.000-07:00

“You’re welcome for the cancer,” sweet & sincere 4-year-old Riley told me as he left the Village Party last month… and as I composed this, my last TigerOx blog, it seemed like an apropos title. Although I’m hardly thankful for the events of the past year (I’m still somewhere in between the “pink ribbon” and the “cancer sucks” club) I recognize that I do have an incredible amount to be grateful for. I can be grateful for the fact that I found the lump and followed up on it (which, as a dr-phobe, was completely outside my character) and that my OBGYN sent me straight to get an ultrasound. “1 in 100 chance,” she said, “but it’s good to be sure.” (At first I thought this was her just doing her job, but the more and more stories I hear about doctors & nurses dismissing the concerns of women (“you’re too young…”) I realize I was in the lucky minority.) I can look back with gratitude on the fact we have great health insurance-- second opinions, tests & drugs extraordinaire for (granted A LOT of) $25 co-pays, or that I had wonderful doctors and state of the art treatment, none of which was fun (ok, some of those chemo sessions had some moments, especially when marshmallow guns were involved) but none of which could’ve been better. And mostly I can be glad that we're through it. But what has been truly extraordinary about this journey has been the people involved. I made people wear nametags at the party (jim thought it was really funny that I wore one myself, but hey) because there were people there from all aspects of our lives: family, work, friends, school… and not many people knew each other. “Introduce yourself to someone”, I told the crowd, “because, believe me, you people are good to know.” I should know.
Just a few things you all have given over the past year:

Cards to cover a wall in the kitchen and fill a huge scrapbook
Food for 6 months, and the pounds to prove it (Yum!)
Over 700 hours (18 weeks) of donated leave
Hundreds of blog comments
More chemo buddies than sessions (and a reputation at the clinic for crazy behavior)
Free parking at daycare
An “infusion fusion” mix cd for each chemo session with a follow up “Ode to the belly boob” best of collection
Over $10,000 to the Avon walk
Team TigerOx of 30+ at the Race for the Cure
Oil changes & lawn mowing
No problem filling in a month of child care when liam was out of daycare & I was out of commission
Enough of movies, books, and TV shows to get through 2 surgeries and 8 chemo sessions
Countless happy thoughts and the Village that got us through this

One of my favorite things every year is to put together a Christmas card with a bunch of photos and the typical 1 paragraph summary of the year’s events. Lately, I’ve been amusing myself with what I could write for this year (especially for folks who aren’t “in the know”) Can you imagine? Good suggestions have included “2006: F**k this S**t” and my personal favorite, an interactive worksheet of match the family member to the medical treatment:

But as I look back on 2006 and forward to whatever lies ahead, I don’t know if I’ve become any braver, or any stronger (maybe a little less of each, actually) but there’s a song, from the musical Rent that kinda sums it up for me (you know I had to include modified song lyrics in here somewhere)

Seasons of Love

Five hundred twenty-five thousand six hundred minutes. 525,000 moments so dear.
525,600 minutes—how do you measure, measure a year?
In nightmares, statistics, in treatments, in trips to the doctor?
In hair loss, in blogging, in laughter, in strife?
In 525,600 minutes- how do you measure a year in the life?
How about love?
Measure in love.
Seasons of love.

525,600 minutes. 525,000 journeys to span.
525,600 minutes - how can you measure a year that you never could’ve planned?
In strength that you gained, or in times that you cried?
In bravery you feigned, or how hard you tried?

It’s time now to sign out, tho the story never ends
let's celebrate remember a year in the life of friends.
Remember the love!
Measure in love.
Measure your life in love.
Seasons of love!

(singitwithmenow)

WHOA NELLY, GIDUP

2006-10-11T14:46:00.000-06:00

As I shift back into my pre-diagnosis schedule that includes fewer and fewer doctor appointments and more and more getting back to life, I’m finding myself with less and less time and inclination to post to the blog. (Actually, it probably more due to the fact that the last season of Lost came out on DVD and now all my nights are spent watching that, but still…) But I do owe you all an update of the fun events of the past few weeks:
Ireland was, not surprisingly, awesome. T, Lisa & I had a great time touring around for several days before my meeting started. We even had wonderful weather and many days of blue skies. Highlights included Killarney National Park, staying at the Lake Hotel, driving around the Dingle Peninsula, taking a “jaunting car” up the Gap of Dunloe with a driver named Paddy and a horse named Nelly (seriously), and of course, hanging out with Lisa & Tracey. We also had a fantastic turnout for Team TigerOx at the Race for the Cure. Denver has the biggest race in the country, so we were there with over 65,000 other people. I missed all of the ceremony stuff at the end, which might have been for the best, as I’ve not quite embraced the pink ribbon club as my own yet, but I was a little disappointed I was too late to get all of the free survivor merchandise. I mean really, a crappy 9 months should at least earn me a Starbucks gift card.
Throughout this whole thing, I have always looked to my birthday as a milestone when I would be better. And with the trip to Ireland, the race, and the party all falling within a few weeks of October 7th, it just confirmed the expected transition in my mind. Physically, I’m doing great, as indicated from the ever-increasing poofiness of my hair (hair-related comment heard frequently: “It really has a mind of its own, doesn’t it?”). Mentally, though, I feel like I’m grappling to get up the cliff of this middleplace.
It was overwhelming, for example, to be thrown back in with the Leadership Council (the meeting in Ireland). As I think I said once, the group is probably best described as like The Apprentice without getting fired—these folks are extremely bright, incredibly motivated and ambitious. I don’t know if it’s because while they’ve been cruising along in the fast lane this past year I’ve taken an off-ramp into a town best situated in a Stephen King novel, or because I’ve lost some of my confidence, or what, but I felt like I was on a different planet than they are. I feel this disconnect with a lot of people (sometimes even myself, if that make any sense). I don’t know if I just want credit for my foray into Crapville, or that I just think about things differently now, or something else I can neither explain nor understand.
There was a point at one of the dinners where the Ireland manager was asking the folks at his table what their plans were in 5 and 10 years—expecting (and often getting) answers that involved steps on the way to division manager and business unit president.
My answer is simple. I want to be alive.
I may be lucky to have this great big-picture perspective where the little things don’t matter, but I’m struggling to define what does matter. There’s got to be some equilibrium point between just wanting to be alive and focusing on the best way to live on a day-to-day basis to achieve future goals. I need to find some way to balance getting on with my life with taking time to reflect on how this experience has affected and changed me (whoanelly, gidup).
I don’t know how to do that.
What I do know, however, is that even if I’m not completely “better,” it’s all so, so relative-- turning 34 is a milestone... and that, more importantly, this village deserves to party.

WNL

2006-09-26T15:56:00.000-06:00

WNL- "within normal limits..."
which is what my 3 mo test results were. woo hoo!
In about an hour, I leave for the airport to go to Ireland with my sisters for a week (a work trip that they're joining me on).

Hope to see you on Oct 8th for the Race for the Cure or the 14th.
My friend said we're on the "frieght train to wellness." Heck, I'll take the jet plane.
Life, as they say, is good.

STEPPING-MILESTONES

2006-09-13T07:56:00.000-06:00

I realized yesterday that is was exactly 3 months since my last chemo. That's the magic number the oncologist threw out there as far as "getting it out of my system." However, there are a few notable things that I am afraid to lose:
1) I have not had any allergies this summer, which has been awesome
2) mosquitoes have not been biting me (note that people used to hike near me because I would draw the bugs away from them-- as an added bonus I would get a welt the size of a kiwi fruit wherever I got bitten)
I'm not certain that chemo is responsible for these two bonuses (although I must admit glee at the thought of a mosquito biting me and dropping dead from my "poisonous" blood!) but I'll take what I can get.... I think next summer I'll stick with Claratin and Deet, however.

I started back to work on Monday. I'm easing back into the swing of things, & it was heartwarming to get such a warm welcome back. Sure enough, everything kept functioning fine without me, but it's still good to know I was missed. I'm doing pretty well and getting much better at using the mouse with my left hand. I was exhausted yesterday, but I think that was much more a function of an early-rising baby than any lingering medical issues-- ah, "normal" life.

In really exciting news, Liam had a Dr. appointment last week and his echocardiogram was "Normal"!!!! Now he can be off O2 most of the day-- which is great considering he is moving up to the Toddler room at daycare. Someone described that room as "a blender with the top off," and although an O2 cord would have added some fun to the mix, I think learning to put on his shoes and clean up his lunch are big enough challenges to deal with. He will be on O2 at least at night through the winter, along with monthly anti-viral shots, and of course, the viagra, but those are relatively easy to deal with since now we get to see the whole of his beautiful face.

Team TigerOx is officially signed up for the Race for the Cure October 8th. Sign up for either the Co-ed 5k or the family walk if you're interested (on-line signup deadline is Sept18th). I've never participated in anything like that, let alone been part of "the cause". Hmmm. I wonder if suddenly pink will become a part of my wardrobe? All part of the infamous "new normal," I suppose...

One step (mile?) at a time...

HAT HEAD

2006-09-05T08:43:00.000-06:00

We had a wonderful weekend up in the mountains with perfect weather and dear friends in from out of town. I'm feeling better and better-- my hand & arm are even ok as long as I don't work on the computer (too bad I have a desk job.) I can "legally" lift Liam and go back to work in less than a week-- so my life is tracking toward normal, which is where I've so (hypothetically) longed for it to be all these months. My hair is even long enough to get "hat head" after wearing a baseball cap. I am no longer "marked" as a cancer/chemo patient (although folks probably think I need a new hairstylist).

Last week I heard a touching commentary on NPR by Debra Jarvis: Sorry About the Cancer, How's Your Hair.:

It's not about the hair, but that's one of the first things people ask about when I told them I had breast cancer. "Will you lose your hair?" Some people just assumed I would. "There goes the hair!" one of my friends said, trying to be light and funny. I looked at her and thought, "You've got terrible hair, you'd love for me to lose mine." Having cancer is not bringing out out the best in me.
But the thing is, it's not really about the hair, it's about death. People die from cancer all the time, but it's so impolite to say, "Will you lose your life?" It's much easier to ask about the hair. Because if you don't lose your hair, you can almost pretend that you don't have cancer.

When you're bald, you are marked. You can't pretend that things are normal. So logically, now that I'm not bald, things should be more normal, right?

Why don't I feel normal?

At least when I was in treatment and bald I had a (good) excuse to feel bad-- tired, scared, selfish, and (morethanalittle) crazy. Some brave people (eventhough I had been known to mock them) would ask "How are you?!" with that look and (gasp) even give me a hug. But now that I'm "better" it's passe-- I feel guilty bringing it up in conversation (eventhough it's been most of my life this past year) Been There Done That. whatever.

So why do I lie awake at night, gritty-eyed and exhausted-- figgity and agitated bordering on panic (gotosleepgotosleepwhycan'tIjustgotosleep?!) So I'm still uncomfortable, so I still get sore. I've come so far... blah blah... So I just don't see how in a week I will magically be better enough to be up to full speed with the kids and at work. I've got hair, dammit!

Debra Jarvis continues:

It's not about the hair, but people want to make it about the hair because it's so hard to listen about fear, and pain, and grief.

Yeah yeah yeah, when can I get back to before?

My grandmother told me about how my grandfather was in a terrible accident when my uncle was a baby (before my mom was born). He got hit by a car and was in a coma for several months. Amazingly, my grandmother supported her family while taking care of my uncle & grandfather until he woke up and recovered-- which is one of the many things I admire about her-- but what stuck with me about the story is that she said he was a different person after the accident... a quicker temper and a changed personality.

"So my mom never knew her "real" Dad?" I asked. "Not really," she replied.
"Would you have married him if you met him after his accident?"
"Probably not," she responded.

I want the "real" me back. But in my heart, I know it left for good with the hair.

GLORY DAYS

2006-08-24T15:48:00.000-06:00

I've been told that there comes a day after a major surgery that you wake up and feel 100% (ok, 80%) better. My turn-around-day was last Friday. Thurs I was fairly miserable. Friday I was me again. It was nothing less than glorious. Don't get me wrong, I still get tired & sore quickly and at the end of the day I move like a 90 year old, and I definitely need a few more weeks off work to make sure I get all these photo albums finally done, but the bruises are definitely fading to yellow-- I can even drive now. So I am giving myself this quasi-well but still off work time as an (almost) guilt-free gift to myself (happyhappydays). I still can't pick up anything (i.e., Liam). which sucks (especially for jim, who has to do all of the 5:30am wake up duties) but he (liam, not jim) is toddling around like a champ these days. He's so proud of himself (liam, not jim).
So, I've been thinking (now that I'm off the drugs, it's a bit easier) when do/did I become a breast cancer survivor? Now that I feel better? (I often think about the fact that the it was the treatment and not the disease that made me feel bad... but that's good, right?) I've still got a few more (small) surgeries to go-- do I wait until after that? I heard that at the Race for the Cure "Survivors" get a special tent and wear a nametag with a number. 2 years... 5 years... 50 years (ohbuti'dliketobethatperson) What's the starting point? When I was diagnosed? (can you believe it's been almost 8 months??!!) The doctors say the tumor was there for years before I found it. (freaks me out, I look at photos of things past and think: "it was there then, and I had no idea" (...whenmyguyswereborn, onmyweddingday, atmygraduation...) It's sort of like when you dated for a long time before you got married and people ask you how long you've been together-- "um, we've been married for 5 years, but we lived together for 2 years before that and dated for 3 before that... what's that add up to?" I've never liked that word-- survivor. I don't know if it's because I don't like considering the alternative, I don't want to be associated with the "stigma", or (maybejustmaybe) because it means I'm done fighting and have to get on with the rest of my life.
Speaking of which, (finally) happy things on the horizon (save the dates):

Join team TigerOx during the Denver Race for the Cure on Sunday October 8th at the Pepsi Center. You can do the Women's 5K Walk/Run (7:15am) the Co-ed 5k walk/run (8:30am), the Family Fun Walk (9am-less than a mile), or the Sleep in for the Cure. If I get really inspired (I'm off work, afterall) I'll make up t-shirts.
Come to our Thank the Village Party Saturday October 14th from 3-7 in genesee. It's about time I fed you guys for a change. more info to come on both events but if you're interested in either, let me know.

And finally, some amusing boob anecdotes (TMI alert):

I don't have feeling in my boobs anymore, and they're a little bigger than they used to be (thank you, extra brownies). In any event, I don't really know my own "boob strength", as it were (potentially a new superpower?) I will knock things off tables, etc. without knowing what I've done until something crashes to the floor. I've heard people say that this whole ordeal has just been an excuse so that people won't hug me, but take this as a friendly warning.
We were discussing the new airline restrictions the other day and someone said that they have banned gel-filled bras. Does this mean that I wouldn't have been able to get on a plane if I had gone the saline-implant route? (can you imagine?!) Chalk another one up for the belly boob.

NUTHIN' MUCH

2006-08-17T19:35:00.000-06:00

I have been uninspired to write lately because the road to recovery, although progressing, is pretty dull. Plus my stupid hand is still bugging me a lot so it's hard to type (although I am getting better at left-handed stuff). I am back home, and it's great to be back around the guys, but I have to admit I miss my cocoon easy-chair sitting, cable-watchin', sleeping-in life at Richard's where all I had to worry about was when to take the next Vicoden. Now that I'm half-way thrown back into the life of responsibility-- almost sick kids, never ending laundry, schedule-juggling blah blah blah-- I am easily overwhelmed, often incompetent, and habitually feeling miles away from who and where I want to be.
But on a moment-by-moment basis, things are good. I can sit down on the floor and liam will toddle over and give me a hug. I almost look like I chose my hairstyle. Jim pointed out an Animal Hospital at a strip mall and Xander said "that's where mommy was!" I'm closer to my Mom than I've ever been. I'm way further along at 3 weeks than I'd ever imagined I would be... in the next few weeks I'm looking forward to the return of my wit, energy, and renewed superpowers.

EVERYTHING'S COMING UP RAINBOWS

2006-08-08T10:20:00.000-06:00

I'm actually fairly sure that's the wrong expression, but after spending the week with my mom hearing expressions like "scrummaging through the trash" and "the room has no fung shu" (and being on vast amounts of drugs) I'm a bit fuzzy on correct word usage. Plus, if you saw my pathetic bruised arms, you would agree with me that indeed, I have become a colorful pallet indeed.
As hoped, I went home from the hospital last Wednesday, and have been camped in various easy chairs ever since. Physically, I have been feeling better and better, as long as I don't try to do anything, like say, walk far distances (i.e., across the room) make (inadvertant) quick moves, or go more than 5 hours without a percocet. Mentally, I'm typically quite chipper (especially since it doesn't hurt to laugh anymore) and but I definitely have my zone out/cry inconsolibly jags (which still hurt) but I'm trying to be patient with my mind and body (easier said than done).
The time in the hospital, although mostly a blur, was no better than you'd expect. Most of the nurses, although nice, were overworked and not particularly responsive. The worst moments were when the nurse changed but forgot to turn on the pain medicine, and when a blood transfusion didn't quite make it into my vein (ref. arm picture) Thank goodness I had everyone in my family there (in shifts) 24/7 to look out for me. Sweet jim spent 4 of the 5 nights there with me (thanks to Carol and Larry for watching the kids-- of course, Liam was sick and was home from daycare Mon-Wed-- figures) and loyal lisa was after the nurses every 2 hours to make sure I got my medicine on the the night she stayed with me.
My biggest complaint has been my arm/hand. Somehow, when I was stuck in surgery position for those 11 hours, circulation got cut off and/or a nerve got pinched. In any event, although I can move it a lot better now, it's very tingly, achy, and weak. (... which makes using the TV remote a challenge). It will get better with time, but because I wasn't expecting it, and unfortunately, because it's a nerve thing, the pain medicine does nothing to alleviate the discomfort, so it's pretty distracting and annoying (and I guess I'm going to get much better at doing everything (including typing) with my left hand).
Overall, though, I'm really happy with the results of the surgery. I'm thrilled I went the "natural" route with the belly boob surgery over implants-- I woke up feeling/looking similar to how I went to sleep... minus the belly, which, I have to say, is awesome. While I was in the hospital my eyelashes and eyebrows came back and I am super-fuzzy-- enough so that my hair actually gets matted when I sit in a chair all day! I've still got a lot of healing to do, but I think I will be happy with this new bod o' mine. Best yet, all the pathology came out clean.
I got to spend the weekend up at Carol and Larry's with Jim and the boys. It was great to see them... I don't think anyone has ever been as as happy to see me as Liam, who literally couldn't stop laughing-- until I couldn't hold him, which pretty much broke both of our hearts... but he won't remember and I will get over it (maybe). Xander is sweet as ever ("you better yet mamma?") and was very curious to see my new boobs ("you have bandaids!"). My mom is moving today, so I've moved to her boyfriend Richard's-- who has the most incredible home theatre system EVER... including internet access (finally). I'm not sure about where I'll be staying from here on out-- I miss the boys terribly, but when I go home it's going to be a real challenge not to hurt myself. I've cut way back on the meds, but believe me I know when it's time for the next one. I'm not sure when I'll be able to drive, or stand for more than 5 minutes, or lay on anything other than my back, or a bunch or other things that will come before I know it (but not soon enough). I saw a good quote the the other day: "You can only live happily ever after day by day"
Between reminding myself that, 300 cable channels and the internet, I'm all set.

THE BOOB BEAT

2006-08-02T07:01:00.000-06:00

Doesn't that sound like the title of an underground jr highschool newsletter?
Greetings from the adjustable bed ("I neeeeeed one," says X) in room 620, brought to you by a stolen wireless connection. 11 hours of surgery, 2 new boobs, 5 days, and a whole lot of pain medicine later, I am getting there. I have shed all the "input" tubes, which is good, and I am hoping to go home today (or rather, to Moppy's). I finally have enough feeling in my fingers to type, although if someone outside of the hospital had given me the bruises I have on my arm (I've been having some vein issues) I could have them arrested. Nifty.
It's strange to be so slow-- in both thought and movement. But I can feel myself returning more to me every day. My sister said it's like I have narcolepsy because I'll seem alert one second and then next I'll be asleep. Right now the medicine is kicking in and typing has pooped me out, so I best return to adjustable-bed-land.
Thanks for all your thoughts and comments-- I truly appreciate and rely on them.

I guess breasts are limbs...

2006-07-30T08:47:00.000-06:00

Cari is recovering in the Limb preservation unit of the hospital. She is doing well, considering. Today is supposed to be the worst day for pain and she may need to get a little blood. She is in good spirits and has had a steady stream of famliy vistors helping her through the day. I am able to get wireless in the hospital and she is reading your comments to help stay positive.

The surgery went well and the results are pretty incredible, new breasts and a flat stomach. The reconstruction surgeon must have even more ability to focus than Cari considering an 11 hour surgery using a microscope for most of it. Cari was able to get up twice yesterday and may be able to take a few steps today.

We hope she will be able to leave the hospital either Tuesday or Wednesday. But first she needs to be able to sit up and stand on her own, the pulse in her breasts needs to stay there (they check it every hour), needs to be able to take pills, eat foods, and get unplugged from the mess of cords (oxygen, pain drip, IV, leg messagers, etc).

We appreciate all you all have done for us and our family during this difficult year.
Jim

Surgery Update as of 4:30 MST

2006-07-28T16:17:00.000-06:00

Cari's surgery began promptly at 7:30 this morning. The first surgeon came out around 10:30 and reported that all went well. Jim heard from a nurse around 1:30 that all was continuing to go well. Based on what we've been told, it sounds like she should be done with surgery sometime around 6:00ish.

So....we don't know much....but, so far, so good. More updates to come as we know more. Please continue to keep Cari in your thoughts :-)

Lisa

MY BARN HAVING BURNED TO THE GROUND I CAN NOW SEE THE MOON

2006-07-27T22:44:00.000-06:00

My surgery is at 7:30 tomorrow morning. I have to be there at 6. When we went to the mastectomy pre-op appointment, Jim gave Dr. Miller a Starbucks card and said she could only use it on the day of my surgery. The other night (I was an idiot and didn't take a sleeping pill) I was up at 2am pondering what the plastic surgeon will do for lunch during the 8 hour surgery. Maybe I should bring him a Power Bar.
In other food news, Liam is officially a chunk. He had his 15 month appointment today (yeah, a well visit for a change!) and measured a whopping 26 pounds-- 8 more than when I got my first surgery... up from 10th percentile to 80th. This puts him above the 20 pound lifting threshold, but I, for one, am willing to deal. Because the fact that he's on viagra and is nicknamed "wham" is not enough to torment him with when he's a teenager, we've been coming up with new names for him. T calls him "Ham hocks" because of his sumo legs. My mom, in another classic malapropism, calls him "Hammer Hogs." He, of course, is unphased by distractions that keep him away from his next meal.
Jim asked me the other day if I thought it was strange to have so many people know so much about me. Strange, maybe. The best thing about this whole ridiculous experience, absolutely. You like to hope that when it comes down to it, you would be brave and strong-- but you can never really be sure if you've lived a charmed life and never really been tested. But it's funny, it's not really about being brave or strong at all. It's about being honest... because being honest has helped to create the village. I am consistently awed and humbled by the response and support I've received throughout. You have gifted me with the confidence to believe that all will be well. Carol gave me a card yesterday that says it better than I can:

my barn having burned to the ground

i can now see the moon...

(fullandbright)

Happy thought alert: pretty much any time you feel the urge all day tomorrow.

HAPPIEST BABY ON THE BLOCK

2006-07-20T08:58:00.000-06:00

I am thrilled to say that the hospital visit yesterday went as well as we could've hoped. They did all of the tests on Liam and determined that his lungs look great and that his heart pressure is lower than they thought, so his pulmonary hypertension can be classified as "mild". He is starting medicine and can begin to wean off O2 when he's awake. He will likely be on O2 at least at night through next winter and will be on the 3x day meds for a few years, but similar to asthma, they are optimistic that he will fully outgrow this in a year or two. Yeah!
The dreaded hospital visit had it moments-- particularly the part where we had to keep him lying flat/still for 4 hours after his procedures (he's is freakishly strong and wiggly) but all the doctors were great and we were home in the afternoon instead of spending the night, as we had anticipated. Surprisingly, the medicine he will be on is Viagra. I honestly thought they were kidding, but no. It's called something else (you'd hate to give a 1-year old a bad reputation) but that's what he'll be taking-- it's a "dilator" they tell me. Who knew. I'm just glad we're done with this step and have a plan forward.

Jim and I had a kid-free stay up in the mountains last weekend, thanks to Mop, T, and Annie. We also got to go on a hot air balloon ride, thanks to the Diana Price-Fish Foundation-- kind of a "make a wish" foundation for adults, with the goal of "helping adult cancer patients enjoy life." Well, it worked. We got to go 2000 feet up and see the Fraser valley from an entirely new perspective (talk about getting above it all) and down low enough to pick a pinecone from the top of a tree. I was tickled when the pilot blew bubbles over the side. Very cool.
A week from tomorrow is BBG (boobs-be-gone) day. I had both my pre-ops (masectomy & reconstruction) this past week, and for a change, didn't have any unpleasant surprises. They did take pictures though... although this time it was the dr. with a little digital instead of a blue photo room with lights and X-marks-the-spot (proving that I chose the right dr.). "I'm sorry we have to do this," the doctor said, "but later on you will like to see how far you've come."
Indeed.

BUT OFFICER...

2006-07-11T10:19:00.000-06:00

I know you all have been waiting with baited breath for an Update on the Exploits of Mom, so I thought I'd fill you in:

The other day when my mom was driving down Colorado near Hampden (a busy road) her windshield got hit by a golf ball, which she saw coming at her, but, due to the traffic, was unable to maneuver away from. It hit right in front of her and shattered the glass, making it nearly impossible to see-- that didn't stop her from pulling a U-ie (I have never tried to spell that word) and zooming into the golf course parking lot, where she found a confused looking guy and confronted him: "Are you looking for your ball?! It hit my car!" (Note, this is the same car that was stolen from her house (by someone else) and from the body shop (by her). Luckily, the guy was contrite and paid for the damage, but geeze, if I'm trading in my boobs, she should get a new car already.
Mom watched Liam Sun morning so we could help prepare for Carol & Larry's wedding (yeah them!!) On the way up to the ceremony, she got pulled over by a cop. (Note, my mom does not have a good history with this sort of situation) She told him she was speeding because she had to get a sick baby to an appointment (not a lie, really). The officer gave her a skeptical look-- until he looked in the backseat, and sweet liam, oxygen and all, started wailing (she didn't even have to pinch him). The cop let her go with a warning. Just think, if fuzz-head me was there, he would've given us a police escort.
At the wedding, alexander was a dancing machine. His energy and enthusiasm were amazing and heartwarming. "Don't you love seeing him so happy?" I asked my mom. "I love seeing you so happy," she replied. I guess we never tire of seeing joy in our children.

INDEPENDENCE DAZE

2006-07-05T20:17:00.000-06:00

I was bemused by all of the comments after my last post. I didn't realize I sounded so comparatively chipper. I'm reminded of before, when someone would say "Do you feel sick?" to which I'd respond, surprised, "Do I look sick?" (obviously...)
We had a wonderful time up in the mountains for the holiday. I LOVE fireworks... something about all the people around you not being able to contain their "oohs" and "ahs"-- but I have potentially traumatized xander forever (they're really LOUD in the mountains). Ah well.

Things to be happy about:

This weekend liam was sick.... cough, drippy, all around miserable. I took him to the doctor and we were both psyched that it's just an ear infection and cold, a "normal kid illness"-- his breathing was fine throughout and some antibiotics cleared him right up.
Sunday I wrestled with the kids all morning AND went on a hike and wasn't exhausted. I went to my last oncology appointment for 3 months last week. My CBC showed I was still quite anemic and needed another shot. Can you imagine how much energy I'll have when I'm not anemic?!
In a nice karma circle, one of the wonderful women I've met through the blog's brother-in-law is a pulminologist where liam is getting tested, is on-duty that day can give us extra help if we need it. Yeah.

Physically, obviously, I'm doing great... other than the fact that let's just say I'm not at my most attractive stage. I look like a squishy, fuzz-headed, no eyebrow/eyelashes alien. (Did you know a lot of women, including me, actually gain weight on chemo? Isn't that insult to injury? Of course the fact that I took to heart the nurse's instructions to "eat whatever I want" didn't help...) As the doctors keep telling me (how is this for lame?) good thing I'm already married and have kids. Mentally, I'm torn between not wasting my "good month" and trying to prepare for this next surgery phase, which is quite frankly beginning to scare the crap out of me. There's some balance between denial and dwelling on it that I'm having trouble finding.

Way back in the beginning of this, I read a book that said women having mastectomies should take a bath and drink a glass of wine and say goodbye to their boobs-- that it is a real loss that requires reflection and acceptance. At the time (when I was just facing a lumpectomy) I thought it was a little ridiculous, and mostly just sad. Now I don't know what I think. On Monday, when we were back in the city, when we were going to sleep I heard booms and rushed outside to see if I could see... turns out we have a great view of above Coors Field from a few blocks away. As I watched the finale trying not to blink so I wouldn't miss anything, a random thought snuck into my brain: "this is my boobs' last fireworks."

But it's not my last fireworks-- and that, in the end, is all that matters.

FEELS SO GOOD TO BE FEELIN' GOOD AGAIN

2006-06-28T20:18:00.000-06:00

You know when you've been sick for awhile and you've been feeling miserable and then one day you feel a little better, but it's so good to not feel awful you feel great? (huh?) Multiply that by a gazillion and that's me. Today I felt the best I've felt in months-- and it's only going to get better-- (in july anyway--and believe me, I'll take what I can get).
I'm on my way home from back-to-back trips to Fairfield, NJ and Midwest City, OK (I know, I know, I'm a jetsetter). Jim and I had the honor of attending Raj's traditional Indian wedding. It was a multi-day affair with lots of Bollywood music, dancing, and the most beautiful outfits I've ever seen. Wow. We're missing out with the whole "white wedding" tradition. We got to see a lot of Jim's old friends from when he lived in Dallas... we first saw them at one of the parties, when I was wearing my hair. "No one knows!" I whispered to jim, "How cool!" It was good and bad, because as nice as it was not to focus on it, I kinda wanted to take credit, y'know? It's like there was this huge (almost dead) monster in the room that was invisible to everyone else but me and jim.
But it's a lot easier to be asked "How ARE you?" when you have 7 years worth to answer for--including a trip around the world, marriage, multiple moves, jobs, a house, and 2 babies... helped to put everything into perspective. Cancer, someday, could be the thing that no one would ever guess about me. (right now it's the fact that I was in the Navy)
And did I mention I feel REALLY good? I must've been a Tasmanian devil before (funny, I don't remember being energetic?) because now I'm pretty much bouncing off the walls. Working all day. Staying up past 9pm. (wildandcrazygirl, i know).
I'm really looking forward to being home. Liam is taking his first steps when I finally have the energy to chase him. We get to go up to the mountains for a long weekend. The 4th of July has always been my favorite holiday...
What a difference a week (with no treatment!!!) makes.
(ithinki'llstayinColorado)

TERRIBLE, HORRIBLE, NO GOOD, VERY BAD YEAR

2006-06-21T09:08:00.000-06:00

There is a great book, Alexander and the terrible, Horrible, No Good Very Bad Day, which starts:
"I went to sleep with gum in my mouth and now there's gum in my hair and when I got out of bed this morning I tripped on the skateboard and by mistake I dropped my sweater in the sink while the water was running and I could tell it was going to be a terrible, horrible, no good, very bad day...I think I'll move to Australia."

Here's my version:
I found out I had a really nasty aggressive cancer and had to have surgery and right after I started chemo liam had to go into the hospital and now he's on oxygen and all my hair fell out and then I learned I'm a mutant and need to get my boobs cut off and I'm so sick and tired I can't even take care of my kids and liam isn't getting better and has to go into the hospital for more tests and everyime I think I have everything under control something happens like this morning when I get to daycare and they tell me I have to take liam home because they think he has pinkeye and I can tell you it's been a terrible, horrible, no good, very bad year.

I hate the concept that I am unlucky or cursed or whatever. That we are pitiable because bad stuff keeps happening to us. But on the other side, I'm getting really sick of being optimistic and looking at the bright side of everything and continuously getting crushed. I need to become a grumpy pessimist so I stop getting so damn disappointed. When I was talking to Liam's nurse last night, she kindly told me "you and jim are amazing," to which I replied, "why, because we haven't jumped off a cliff yet?" ...apparently I'm shifting into "anger" phase of the whole grief process. nifty.

So it didn't go as hoped with Liam on Friday. His Echocardiogram pressure measured similar/a little worse than last time, which means he's not improving as much as they'd hoped. To look at him though, you'd never guess it-- he has gained a ton of weight (3 lbs in the last month!) and is happy and active as ever. In any event, he goes into the hospital for a heart catherization, CT scan, blood work, and a bronchioscope on July 19th (overnight and under anethesthia) to hopefully get more definitive diagnosis and treatment plan. Likely he will be put on some oral medication. And of course, still, the oxygen.

I think part of the reason I'm so grumpy is because I think I just assumed that once I was DONE with chemo I would pretty much immediately be back to 100%. Seriously. The other night I was exhausted after having 6 friends and 3 kids over. I honestly was baffled why I was so tired. How's that for the definition of chemo brain? Also, my hormones are wrecked. I keep having hot flashes in the middle of meetings and covertly looking around and thinking "do you think these guys can tell that my body feels like it's about to spontaneously combust?" (they can't, i asked)

oh, sweet pink-eyed liam is up. gotta go (when exactly am I going to prepare for that big client meeting next week in Oklahoma?) *sigh* (ithinki'llmovetoaustralia)

----

p.s. lisa raised over $10k for the avon walk this weekend. Yeah her!!! Also, please take a sec to visit and comment on hilarious abigail's blog The Cancer Grrl. She starts chemo Thurs. Those of you who thought my West Side Story song adaptation was outdated will be impressed with her Madonna lyrics.

SING IT WITH ME NOW...

2006-06-15T12:38:00.000-06:00

...mamma called the doctor and the doctor said "NO MORE MONKEYS JUMPIN' ON THE BED!!" (now if I could only get that song out of my mind...)
Wonderful Pammy joined me for my last chemo session and we amused ourselves doing (easy) crossword puzzles and decorating "chemo cookies" for the nursing staff. Carol stopped by to deliver "Bubbles" (monkey #8). Good fun was had by all.
Now I should be feeling better and better until (remark your calendars) July 28th, when I'm scheduled for belly boob surgery. Wow. 6 weeks. We should start a pool on what my new hair will look like. Hopefully the good news trend will continue, as tomorrow Liam has a follow-up appointment and tests to reevaluate if he still needs oxygen. (Fingers crossed)

In other news, it's been really hot here in denver and I've been going bare-headed more and more often. (I've got to tell you, temperature control is a huge advantage of not having hair) I'm still quite self-conscious with the general public, and pretty much limit my head-commando to at home, but, as Pam pointed out, I used to breast-feed pretty much anywhere, so you'd think I'd get over it. Also, last night, someone shattered our car window. Bummer, but I was pretty much completely unphased. It is only a car window, afterall. I truly hope I can maintain this perspective long after I forget this pain. (Fingers crossed)

A BEAUTIFUL MIND

2006-06-09T16:34:00.000-06:00

The "lump" was NOTHING to worry about. Oh, happy, happy day. As my friend said, it's great for the medical community to confirm what we already knew, but still. (And medical personnel that tell you to call after noon to get test results and then are closed from 12-1 should be forced to wear those paper gowns for a week.)
Speaking of doctor's offices, we went to another plastic surgeon for a second opinion yesterday. This gentleman came very highly recommended from my surgeon, and she has never worked with the other guy I saw a few weeks ago, so I assumed that I would go with #2. When we walked into the office there was a lifelike mannequin/sculpture of a dancer in a leotard in front of a mirror. We were all (me, jim & my dad) taken aback. Then we were offered water bottles labeled with the firm's name and ushered through a secret door into the circle waiting room. Plaques adorned the walls about being the Best in Denver for all sorts of plastic surgery procedures along with a framed article about how the main doctor in the group had worked on none other than Dolly Parton herself. That alone should've tipped me off.
After an impressively short waiting time, we were next ushered into an office (props to this guy-- it's the first time that a consultation was conducted in an office instead of an exam room) but that's where the fun ended. Next an office assistant said I had to come back to get some photos taken. WHA?!? The pre-appointment paperwork had included a photo release which I had not signed, because, well, ick... so I asked if it was entirely necessary, and she assured me that it was.
I was brought back to the blue "photo room" that was complete with lights and shading umbrellas. I again asked the assistant if I needed to do this and why.
"The dr. needs to see them during the consultation," she answered.
"But my dad is going to be in the consultation," I told her.
"He can sit far away," she said.
Very reluctantly, I signed the photo release (I felt like I was in a bad Lifetime movie about a struggling actress about to do a porn shoot) and had to take off my top and pose for several pictures. "Face the front... face at an angle... face the sidewall... turn your back..."
It was incredibly demeaning and humiliating. Why did I allow this? What is it about going to the doctor that makes you lose all confidence and assertiveness? I do understand the potential point of medical photos, but do not believe they were justified in this instance. How come every time I think there's nothing else that can phase me I'm wrong?
When I got back (fairly stricken) to the office, we watched an interactive multi-media cd about breast reconstruction options. I had to answer questions at the end of each session... which eventually I stopped reading because all of the answers were "True." Then the doctor came in and went through everything with us. He was okay, but it turns out although he does the "belly boob" procedure, he doesn't use the more advanced, much less invasive procedure because the hospital at which he works doesn't have good enough microscopes. When we discussed it afterwards, we all agreed that this guy seemed competent, but obviously didn't focus on reconstruction procedures. After the consultation, he performed an exam during which I stood in front of a mirror (I'm a big fan of mirrors these days, let me tell you) and he took a series of TMI measurements, to which he made me feel I didn't measure up. This guy is obviously used to tweaking perfection, and I'm no model. The whole time I wanted to shake him and say YOU HAVE NO IDEA WHAT A BEAUTIFUL PERSON I AM.
He never looked at the pictures. Doctors suck.
In any event, I'm going with the other guy. It's always good to get second opinions though-- if nothing else to show how relatively good the other dr. is. I've decided to do the belly boob procedure (implants freak me out, and, honestly, the idea of a tummy tuck sounds like a good start to the "new me"). I'm tentatively scheduled for surgery July 15th (yes, a saturday, mark your calendars). We've still got some stuff to work out (like how/when to deal with my ovaries) but are farther down the path.
...and I am learning to be more and more assertive (beware whoever crosses me by the end of this whole experience)
...and the lump was NOTHING. Which ultimately, trumps any yukky doctor visit bigtime.

CONFIRMING THE PATH

2006-06-07T09:13:00.000-06:00

Last week I found what I'm hesitant to call a "lump"-- it's smaller than a pea, under my right (i.e., my other) arm. I asked the surgeon and she said that, because of my history, they will take it out and check it just to be sure. She said it could be a lot of things. She said that because I am currently undergoing treatment it is very unlikely that it is a metastasis.
Here's what I heard: "blah blah blah metastasis blah blah blah". As clever as I've been told I am with words, I can not even begin to explain what a terrifying/horrifying concept that is to me. I have trouble even saying metastasis (and have to force myself to type it). Like I'm invoking lightning upon me or something (I'm reminded of college when I had to call marriage "the M word"). It's the concept of "nothing they can do" at that point. Even if I have another breast cancer. Even if I need chemo again. There are (albeit miserable) things I can do to get better. I have to get better.
The surgeon said if it is a metastasis, then I wouldn't need surgery because it wouldn't be worth it (!)-- to which I say BRING ON THE SURGERY.
It makes me wonder if this is the universe's way of confirming my path. In the past, I have been freakishly mature/nonchalant about test results (the ultrasound won't show anything... the biopsy will be benign... I won't have that gene mutation...) even if it was the worst case scenario (which it was) what was the point of worrying, I figured-- wasted energy, right?
When Jim and I were traveling around the world, I lost him for 4 days in Nepal. It's a funny story, now that I've found him-- and easy to play down how traumatic it was at the time. But to this day, if I'm not sure where he is, I pretty much freak out (in me standards, at least). It's like that part of me is somehow broken and I can no longer control my reactions.
This whole cancer thing has been a lot longer than 4 days, obviously. And waiting to get this test has made me realize that, eventhough I was champ before, I have (understandable) issues (now there's a euphemism) with dealing with the inevitable tests and probable scares. Thus, I need to do everything I possibly can to reduce my risk as much as possible.
Just please, please let me need surgery.

ONE MORE MONKEY JUMPING ON THE BED...

2006-05-31T07:58:00.000-06:00

Chemo #7-- check.
You may remeber my "8 Little Monkeys" blog title after my first chemo. Apparently, however, I didn't, because Carol and her sister Colleen kept giving me all these stuffed monkeys with numbers on them and I had no clue why. (In my defense, I thought one of them was a dog). So now I have 7 stuffed monkeys. Rock on.
Yesterday morning before treatment I was feeling as well as I've felt in months (extra day because of memorial day-- apparently, cancer doesn't work on holidays). I called to confirm my appointment time Tues morning and was told that I was actually scheduled for the next day. Wha??!! I couldn't believe how upset I got about it. It's just so frustrating to be bopping along thinking that I have things under control and then have something so small and insignificant throw me completely for a loop. I don't really like this new freakazoid person. Ah well. It all got worked out (because, I am, afterall, my parent's daughter) so I guess the new "get what you want and take no prisoners approach" has some advantages. I felt a lot better when they ultimately told me that it was the their scheduling mistake-- Good to confirm I'm not going crazy (in that case, at least.)
I can't believe I only have one more to go. (reallyicanbuthey) Well, actually, seems more like 1.5 since I haven't felt the full brunt of the effects of this round yet, but still. I find it amusing when people say, "You're almost done! wow, has time gone by quickly!" Umm, yeah, maybe for THEM... that's ok though, time is indeed marching forward at whatever pace, and hopefully soon this middleplace will be a distant memory. (Ok, likely not distant, but a memory at least).
Some random side-effects I hadn't anticipated: although I still have some hair (including eyelashes and eyebrows (sorta), (a digression-- Every night my friend's almost-3 year old daughter prays for what she's thankful for. Her mom told me the other day that eyelashes and eyebrows have been high on her list as of late...I hear ya, sweetgirl.) sometime during the last few weeks I seem to have lost all the body fuzz I didn't really knew I had-- on my upper arms, back, face... The result of this (besides being slick and fun for jim and the boys to pet (hey, we only have fish) is that my clothes tickle. It's very odd, but not unpleasant. I wonder if this is how babies feel? Does this (at least partially) explain why they wiggle so much? Also, (and this isn't quite as fun) I've got these blisters on the bottom of toes that has let me to wrap them up in athletic tape a'la turban style. That's the chemo pedicure, I suppose. (Actually, it's probably due to the fact that I mostly wear flip flops, but I'm going to continue to blame it on chemo, so there.)

A few more things to be happy about:

My sister Lisa is participating in the 39 mile (!!) 2-day Avon Walk for Breast Cancer June 24th and 25th. Originally, she had hoped to raise $2,000. Due to an overwhelming response she is currently less than $1,500 from her revised $10,000 goal. If you would like to read about her effort and possibly contribute, please check out her letter and/or web page.
Remember way back when I wrote about my colleagues donating their vacation time into my sick leave bank? I recently checked in with HR to see where I stood, given the likelihood of the follow-on surgery. In any event, over the past 4 months or so I have used about 280 hours (7 weeks) and (get this) I have over 420 hours left. That means that people at my work donated over 17 weeks of their vacation to me (in at most 20 hour chunks). I can not tell you how much of a difference this has made. How lucky am I?

TACKING INTO THE WIND

2006-05-24T09:31:00.000-06:00

"We cannot direct the wind, but we can adjust the sails." --Bertha Calloway

My reaction from the taxol treatments seem to be a few days delayed compared to the AC and involves pain from about Thurs-Sunday. On Saturday I wasn't feeling that great and as I labored to get up from the couch I lamented to Jim, "I feel like I'm 85." To which he responded, "but you only look 40." Leave it to sweet boy jim to put it all in perspective for me. :)

The past few days have involved doctors appointments with the infamous "Dr. Data" of oncology appointments past, and a plastic surgeon to try to get a handle on the path forward given the BRCA1 positive gene status. Hats off to dr. data for answering my (printed out) 29 questions patiently and in an understandable (and entertaining!) manner. He is so confident in his numbers, it's amusing. But I guess I liked what he had to say better this time (and this is a true testament to the power of the theory of relativity). According to him (and believe me I've seen different numbers) here are some of the things I've learned:

I have a 58% chance of getting breast cancer again in my lifetime, based on the specific "jewish" gene mutation that I have (average woman ~14%)
I have a 16% chance of getting ovarian cancer in my lifetime (average woman ~ 1.5%)
There are very good screening techniques for catching breast cancer in the very early stages, such as digital mamomgraphy
There are no screening techniques that would catch ovarian cancer before it was late stage
I would not need radiation if I got surgery, because my cancer was less than 5cm and had fewer than 4 positive lymph nodes
(This is the one I really liked) a mastecomy would be easier to recover from than the lumpectomy I already had because they wouldn't take out any more lymph nodes
Having your ovaries removes greatly reduces the chance of breast cancer
If I got breast cancer again, I would likely need chemotherapy again
He thinks gene therapy will be a reality in 10-15 years (i.e., they inject you with something that "fixes" the mutation)
This mutation primarily effects ovaries & breasts, thus men with this gene mutation have a very minor increased risk of getting cancer (good news for dad and the boys!)
Having breast or ovarian surgery does not completely remove the risk of getting breast or ovarian cancer, but reduces it very significantly.

Tues we met with a plastic surgeon, which is right up there on the top 10 list of things I thought I would never do in my lifetime. There is apparently a big difference in wooing elective patients vs. those that are there because they have no choice. First of all, the waiting room looked like a living room out of architectural digest magazine. Next, the dr.'s exam room "table" was a leather reclining chair, and most importantly, the gown they had me change into was actually a fuzzy bath robe! I can not tell you what a difference hanging out in a bath robe vs. those paper napkin things they give you at the surgeons makes. I understand that fuzzy bath robes may be above and beyond, but why can't all dr.s offices give you a gown/robe that allows you to feel somewhat human?! but I digress...

So this plastic surgeon (who must've said "ok?" every third word, but was a nice guy, overall) gave us a glimpse into the wonderful world of breast reconstruction. It was a total "who knew?!" experience. As I have said in the past, it is truly amazing what people come up with. Anyway, (**Warning: Potential TMI!!!**) turns out there are several options. Although reconstruction is always an option down the road after a mastecomy, it's easier to do at the time of initial surgery. I had had this (wrong) idea that they somehow just lopped off your boobs, but actually, they keep a lot of the skin, and mostly just make an ellipse around the nipple and take everything out-- there are a few ways to fill the void, as it were:

One involves putting in what are called "expanders." Here I was (again wrongly) envisioning these metal expanding vegetable steamer type contraptions that would provide a sort of internal wonder woman/madonna look, but no. In reality, tissue expanders are more like balloons (although I assume not as fragile-- could you imagine Wham giving me one of his patented head butts and then POP?!) that go in under the muscle. The surgeon injects saline to "pump up" the expander and stretch the skin/muscle every few weeks over about 4 months, after which a saline or silicone implant is inserted in a follow-on surgery. He said there would be tightness and soreness for a bit after each pump-you-up injection (I'm reminded of when I was 12 and got my braces adjusted). He said the recovery from this (recovery = able to lift kids) is the same as the mastecomy-- 2-3 weeks.

The other option is called "TRAM flap"-- they take tissue from the tummy and transplant it to the breast. I call this the "belly boob". Also possible are the "back boob" and "butt boob" but these aren't really an current options. It's a tummy tuck and a boob job at the same time. This, not surprisingly, is a much more significant initial surgery than the expanders. It takes about 8 hours and involves the surgeon reattaching blood vessels through a microscope (!) Recovery time is much longer (more along the lines of 6 weeks). Advantages are that there is no implant, so it's more natural, and the TRAM flap doesn't entail all the follow on pumping up and implant surgery. Plus, it wouldn't require new implants every 15 years or so, as is potentially needed with the expander option.

With either option they do nipple reconstruction a few months after surgery. Which is a relatively easy procedure in which a new nipple is (get this) tattooed on. I had always thought I might consider getting a tattoo if I could think of the right thing to get. Who knew.

Craziness. Mostly I'm just looking at this all in a "wow, how fascinating" sense. Thank god for scientific curiosity.

So, in any event, there is a lot yet to be learned and scheduled and decided, but armed with information I'm finally ready to tack into the wind and aim back to shore. (I've switched from the train to boat metaphors.) On with the journey...

IT TAKES A VILLAGE IDIOT

2006-05-18T09:26:00.000-06:00

Although I would like to, I can not claim credit for this blog title-- it comes from the name of a book that my mother-in-law got for me for mother's day... "It practically jumped off the shelf for you", she said (is this a good thing?). It's about a New Yorka stranded at a summer home in the Catskills. But that's how it kinda is, really-- I feel like I've been picked up and plopped in a world in which I neither understand nor fit-in, with my typical fail-safe companions (e.g., energy, good humor, good health) only in for occasional weekends. But, fear not, I am spared by the people around me, and the nutty things we come up with to amuse ourselves.
I absolutely dread going to chemo because by Monday morning I'm feeling pretty good and I so so so don't want to feel bad again. I'm a chicken. I find things to keep me from leaving the house... can't find my keys, need to get this or that-- you can pretty much see the mental fingernail marks on hardwoods. But actually being there isn't bad at all--dare I admit, fun really. Here is how it goes:
- I go back and get my vitals and Complete Blood Count (CBC) test. This only involves a stick on the finger. (which I am thrilled about every time-- I have come to hate "real" blood draws, which I don't have to get while I have my port)
- I sit back in the waiting room, until I get called into the dr. examination room
- she comes in eventually and goes through my test results (white counts ok, red counts better, but still anemic-- keep those $6k shots comin!)
-I go back out to the front, schedule my neulasta shot for the next day and next session in 2 weeks. Then I wait (again) to get called to the back. The whole preprocess is scheduled for about 30 minutes, and usually takes about 90.
-Next, I go to the back where they administer the chemo. 5 out of 6 times I've gotten a room to myself, which is nice. Michael comes in to "access my port" (how freaky sci-fi-ish is that?) This doesn't hurt much because I put lydacain on the area beforehand. Michael is a huge, quiet guy who is not quick to crack a smile. It has been my mission to charm him. I think I've finally succeeded. (Last time he asked me when I was coming back). He takes some blood samples (I've never heard anything about these, so I assume they've all turned out ok).
-The nurse comes in and gives me my pre-chemo drips. For taxol this involves steroids, benadryl, & tagamet... to reduce nausea and prevent an allergic reaction. When all this is done, she hangs the Taxol, which takes 3+ hours to infuse.
-After the infusion I get the anti-anemia shot in my belly, which I've found hurts A LOT less if I don't get it in my arm, it's room temperature, and they inject it slowly. Go figure.
Then I go home... Doesn't that sound fun?
I always read about people meeting friends who were receiving treatment at the same time. Everyone at my place seems to be 70+ and sleeping (how can people go to these things by themselves?), so this hasn't been the case for me. Luckily for me, I've brought along my own "chemo-buddies". It's been fun because I've gotten to spend one-on-one time with friends and family who I don't often see or (in the case of jim) get to talk to in a quiet setting. Everyone who has accompanied me has gone above and beyond in the "how to amuse Carolyn" department... to the point where a lady in the elevator last monday asked Meghan if she was staying the weekend because she had such a big backpack of stuff with her. Here's what was in her bag of tricks:

A book of mad libs
Coloring book and markers
"It's All About Me: Personality Quizes for you and your Friends" (If our lives were movies, mine would be a comedy, Meg's would be an animated musical)
A Latch Hook Rug
A Playboy magazine which she purchased at the airport. Now here I must digress: if you know meghan, the idea of her purchasing a playboy magazine, in an airport, no less, is hilarious. She bought it because when we were in college we got her a playgirl magazine for her 21st birthday for a joke, and when she opened it she threw it across the room in horror. We relished doing dramatic readings from it to see how red she would get. My reaction to her pulling out the playboy was similar to hers in college. "Put that away!" I whispered fiercely. I had gotten quite the reputation a few weeks before when my sweet mother-in-law pulled out a book of what I thought was flower origami and turned out to be "Kokigami: Performance Enhancing Adornments for the Adventurous Man" which is just about the funniest book I have ever seen. I made the mistake of showing the nurse and I swear she didn't come back for 2 hours. Now every time I go in there she makes remarks about me bringing in dirty pictures. And to answer the questions on everone's mind: "Why Playboy?" Because they didn't have Playgirl at the airport. And yes, we did read it when we were safely at home. There's a great article about golf courses that Meg's going to show her husband.
A PVC-pipe marshmallow blow gun. I highly recommend this for, well, anyone, but particularly anyone hooked up to a chemo IV. Michael came in to see why we were laughing so hard and we shot him. (He complained about "marshmallow bruises" the next day, poor fellow).

Joy can be found anywhere, it seems... as long as you're with the right people.

HAPPY MOTHER'S DAY

2006-05-13T16:59:00.000-06:00

Dear Mom,
I’ve been thinking a lot about genes lately. Like I said before, I got lucky. But more important than what I inherited are the things you’ve taught me. You have always been my best audience. You laugh at all my jokes and give me the inspiration to keep trying to be witty, even when most coherent thoughts are beyond my grasp. You’ve taught me humor really is the best medicine. You light up gatherings with your enthusiasm and are one of the few people I know who has the stamina to keep up with the kids for an entire day. You’ve taught me that energy can be mustered from within and shared with those around you. You always believe the best about things and people. You taught me that optimism can change outcomes, or at the very least, make the in between time bearable. When I am really, really sad, and all I want is my mom, you are always, always there. You’ve taught me true dedication and loyalty is in coming without having to be asked, and doing what needs to be done without reciprocal expectation or complaint.
Best of all, you’ve shown me how to be a wonderful mother.
I remember the first thing you said when I told you I had cancer… you said we’ll get through this. And we will. I’m just so truly fortunate to have you as such an intergral part of my “we.”
I love you.

ON THE ROAD TO NOTHINGNESS

2006-05-11T09:04:00.000-06:00

I am back revived and rejuvenated from the wonderful trip to Austin. We had a great time at the wedding relaxing, enjoying the Texas Hill Country, and (best of all) spending time with friends from far and wide. Highlights included the wedding ceremony, some amazing thunderstorms that almost brought the house down, mary's stories about tennis lessons with a bunch of 10 year old Sri Lankans, pam intrepidly shooing a Longhorn out of the road, and spending time with Jim without the kids. I had been afraid to say out loud how much I had been looking forward to this weekend, for fear that I would jinx it, but phew. Congratulations Matt & Caroline!! (and thanks). I had a good few days working in the Austin office, where I got several comments on my cute new hairdo (I'm really going to have to spend more time styling my hair once I get it back...). Amazing how just focusing on my job for 2 days in a row is such a much appreciated novelty.

Liam is doing great at back at daycare, O2 leash and all, which is another huge relief and a step forward on the "road to nothingness," as my surgeon described that much-longed-for-day when we are through this middle place and back to our lives as we wish them.
Dropping the kids off at daycare is a frantic game of beat the clock to try to make it back out of the parking lot before the 30 minute validation expires. I almost always fail in this endeavor (usually by about 30 seconds) and inevitably end up paying the $2. Ever since I started chemo, the very sweet parking attendant won't take my money. "As long as you're going through this Carolyn, you don't have to pay," he tells me every time. (How does he know my name?) I honestly thought that he just pushed a magic button and opened the gate, but today I figured out that he actually pays for me... which was horrifying. I tried to explain to him that he most definitely didn't need to do this, but he was adamant. "All I can do for you is pray and pay the occasional $2." My first thought was, "Good lord, I better make sure I get out of here in 30 minutes from now on!" but after further reflection, I realized how much of a gift he has given me. Since he started waving me through, the 30 minute pressure's been off-- I've been lingering, instead of rushing out. Case in point was this morning when I hung out for an extra 15 minutes and Xander showed me his domino and counting work. He and his friend Lili walked to me to the door and both gave me hug kisses to send me on my way. I've come to love these interludes with him. He's so proud to have me around and it's so fun for me to see him in his school environment. Who knew that a slice of peace could be granted for the occasional $2? There's some larger lesson here about small gestures making a huge difference and the importance of learning to accept help... but I'll just say again that I am continuously amazed and inspired by the kindness and generosity of new and old friends alike. It makes all the difference.

NOT CURLED UP IN A BALL

2006-05-04T12:16:00.000-06:00

Welcome to phase 2 of the wonderful world that is chemo. The fact that I am not curled up in a ball of misery at 3 days post treatment is a very good thing. It went well... no allergic reaction (which is really exciting, considering I am typically allergic to everything) and ben did a great job amusing me... Sometimes I wonder if perhaps this is all just a big ploy to have some one-on-one time with friends and family.
The treatment caused some pain and discomfort, but nothing debilitating. Maybe they have you go through AC first so the second half is reasonable in comparison? I do assume this series will be cumulative as well, so I am trying to enjoy the respite. I'm almost over my nasty cold. I'm still coughing a ton-- when the oncologist said "I don't like the sound of that cough" I immediately thought "do I have lung cancer?" Which is really lame and ridiculous, but I guess that's how I'm going to be for awhile (hopefully not forever?). Funny how you think you've come to terms with the whole "new normal" and then something like that happens and you realize how different you've truly become.
Speaking of adjusting to new information, I found out last week that I tested positive for the BRCA1 genetic mutation. Basically, now we know why I got cancer. It wasn't growing up in Colorado, or eating too much candy, or having my first kid over 30... it was because I have a mutation in one of my genes that is known to greatly increase the risk of breast and ovarian cancer. It's pretty amazing, really, that they know this. They even knew to look in one of 3 specific places in the gene because I have eastern european jewish ancestry. If the test had been "negative", it wouldn't have meant that I didn't have some gene that was screwy, just not one of the 2 that they've identified. So now we know. Knowledge is power, right? (...but isn't ignorance bliss?) In any event, now my path forward isn't necessarily as clear. This gene mutation indicates a level of risk that may induce me to have more surgery-- prophylactic bilateral masectomy and/or oophorectomy (e.g., boobs and ovaries removed for protection). Back I go to all of the doctors to learn more about different risk levels, procedures, and options. yippee. Honestly, it was pretty hard not to be devastated... I just so wanted to see that light at the end of the tunnel (which, apparently, was a train?) but the truth remains it is what it is, and now I just know more about it-- so we can make more educated decisions.
The concept of being a genetic mutant is one that could lend itself to some good jokes (or a movie roles in an X Men movie, perhaps?). I did really come out on the lucky side of the genetic dice toss, though... Honestly, I'd rather be smart and sick for awhile, than stupid for my whole life. Granted, right now I'm both stupid and sick, but it's all about the timeline.
For what it's worth, dear readers, I no longer feel like I'm on the downward side of all of this. What's that called when you're hiking? A false peak? There's something so debilitating about thinking you were on the way down and looking up to see further to cliffs to scale. As Xander would say, I NEED you (although for the full guilt-ridden emphasis you'd probably need to hear the actual whine-sob). I need your blog entries, your emails, your calls, your cards, your good wishes-- anything-- to continue. I know it's been months already and this is getting, to say the least, tiresome... but as my energy continues to wane with each passing chemo, I don't doubt I have it in me (wellmaybesometimes) but I've pretty much given up the ghost on the independence thing, hard as it is (andOHitishard) to admit. help.

A few more (HUGE) things to be happy about:

Happy Bday Whammy & Benny! (5/3)
tomorrow jim and I go to Austin to participate in the wedding of our dear friends Matt and Caroline, with the added bonus of getting to see common friends from around the world (Peru, Sri Lanka, DC...)

I will be back, hopefully feeling better than in recent memory (which in my case goes to about 5 minutes ago), on Tuesday.

THEORY OF RELATIVITY

2006-04-28T08:58:00.000-06:00

Done seeing red

It's All Relative
I have been uninspired to write for the past few weeks because of #4 chemo, which was pretty much all it was cut out to be (alleviated significantly by the acupuncture treatment, I have to note) and a really annoying sinus infection (during my "good week" too, damn) that has knocked me on my butt (or as they prefer in daycare, bum) this week. Ah well. I think back to a year ago when I had a similar sinus infection and was 9 months pregnant. That was worse. At least now I can roll over without a crane.
So goes the theory of relativity (ToR) game that I play (rather successfully) with myself-- It is has been/could be worse, ya'know? Take next week, when I start my 4 rounds of Taxol treatment. Potential side effect include joint pain and nerve damage in the hands and feet-- to which my (serious) reaction is -- "Pain rather than nausea... WOO HOO!!" (I don't even have to take the anti-nausea medicine anymore, my insurance company should be cheering as well.) The treatment is a lot longer though, 4 hour infusion instead of 2. Monday's going to be a long day. Good thing the infamous bmacpiper will be there to amuse me :)

Ground View Perspective
A few notes from the just-look-how-fast-I-can-get-to-where-I'm-not-supposed-to-be World of Wham: We went to see cardio & pulmonary specialists last week to get another EKG and echocardiogram. Getting him to sit still for these tests was no small feat. As Lisa so aptly put it, Liam "likes to be where he isn't" and wasn't real keen on being attached to wires, etc. They ended up squirting a sedative up his nose (let me tell you how fun it is to sit there and watch them do these things to your kid) and after 3 minutes he was acting like he was drunk. Eyes half mast, and watching his hand move("Laaa!") like he could see a rainbow trailing after it (maybe he could?). It was amazing. I was hoping to take some home... In any event, the tests show marked improvement from before, almost back to normal-- yeah! They would like to see him again in "a few months" to reevaluate. He's still on oxygen for the foreseeable future, which is hard, but again, ToR, he's not one of the kids in the oncology unit (ohsomuchbettermethanhim). It's almost better that he's attached to the O2 so we can have a trail to see where he's gone. The other good news is that they're going to try him with the O2 at daycare starting monday, so that should be interesting.

In other kid news, Xander and I do this dopey thing where when we say good-bye we say "nose, nose, noggin" while rubbing noses and bonking heads. (Don't ask me why/how I made this up-- I used to do it before riding my bike to work and I am finding that the helmet was a must) Sometimes we joke around and play variations on a theme: "nose, nose, eyebrow.... nose, nose, cheek" etc. Now he like to say "nose, nose, no hair." :) That kid rocks.

X prepares for his trip to the river.

Coordinated Happy Thought Alert #5: 11:30 Monday.

I DRAW THE LINE AT ANYTHING INVOLVING MIDGETS

2006-04-25T08:57:00.000-06:00

*Note: This entry is a guest blog written by T*

Carolyn is the "nice sister" in our family. None of us are evil by any means (well, depends on who you ask), but Cari is always offering to help and always saying sorry for things she doesn't even control.

Exhibit A:

Our house growing up had an amazing hill behind it on which to go sledding. We had many good times back there in the winter. One not so good time for me was caught on videotape when I was about 5. The sequence of events happened as follows:

I slide into the picture, bravely taking on the sledding hill by myself on the inflatable inner tube. Mom is standing about 10 feet down the hill, in position to stop me from careening down recklessly into the large ditch many yards below.

Mom: "I'll catch you! Ooof!"

Oops, the tube bounced off her legs and sent me in a wild spin down the hill towards sure disaster. The whole family was out on the hill in various spots. As I spun out of control, eventually tumbling into a bush not far from the bottom, an interesting study of reactions took place:

Lisa: *consuming handful after handful of snow at the bottom*

Mom: *laughing*

Dad: *calmly continuing to film as his youngest somersaults into shrubbery* (hey, the camera did not shake even one time)

Cari: *dropping her own sled, running up the hill to save me* When it was obvious she was not going to reach me in time, she helpfully yelled out: "She lost a shoe!"

Exhibit B:

Cari was the oldest of three, and therefore sacrificed herself for Lisa and my eventual social lives. She had a curfew of 10:30 p.m. and I had no curfew. Enough said.

Exhibit C:

It was my duty as the youngest sister to be a pest. Therefore, I would do things like read Cari's journals and spy on her with her boyfriends. The fact that she didn't kill me for such actions says a lot.

Exhibit D:

A few years ago, Cari and I went backpacking in the Sangre de Cristo mountains. It was my suggestion to take the straight uphill route, which led us into an endless route and torrential downpour. We could've turned back, but our mantra was "Must press on!"

Eventually, we made it to a flat camping spot, but the rain didn't stop and the winds picked up. Somehow we got the tent set up, Cari's lips were blue, but it was no thing to her. Then came the challenge of going pee. You see, this urinating on the spot thing is easy for guys, but women have to make a little more effort in the wilderness. In her infinite wisdom, Cari came up with the idea (and this may be too much information) of one person squatting and sticking her butt out the tent door, while the other person holds on to her arms so she doesn't go tumbling out into the mud pantsless.

That's dedication, folks.

I do have a point in presenting all this evidence. The "nice sister" is so generous to everyone else, that she has a hard time accepting others' returning the favor. What I have seen over the past few months has been remarkable. The kindness by her "village" has left her no choice but to give in and be propped up by infinite support. She, alone, has the will and the strength of character to make it through each day of this process. But the generosity shown by you all (and I mean all of YOU reading this entry) makes her an overwhelming favorite to soundly defeat this thing.

I still don't think it's easy for Carolyn to ask for help, but she's improving. She asked me to do this guest blog, and said, "I could pretty much ask you to do anything at this point, huh?"

Just about. But I draw the line at anything involving midgets.

I FEEL PRETTY (notsomuch)

2006-04-18T14:35:00.000-06:00

Chemo #4 went fine yesterday and I've been enjoying taking advantage of all of your suggestions of distracting things to do-- thanks (keep 'em coming)!! I've also been pondering the suggestion to, (paraphrased badly by me) observe the experience with curiosity, experience it as it is, with no need to label. Sadly, I've failed miserably, enough so that I've come up with (new words to) a song. (Thanks to T and Carol for help with the lyrics).
Sing it with me now.

Sung to Tune of "I Feel Pretty" from West Side Story

(ME)

I feel shitty
Oh so shitty
I feel shitty, not witty, nor bright!
And I pity
Any girl who feels like me tonight.

It’s not charming.
It’s disarming,
It’s alarming how I snarky I feel!
And so icky
That I hardly can believe I’m real.

See the woozy girl in the mirror there:
Who can that sick bald girl be?
Such a scary scar,
Such a tired smile,
Such a perfect head,
Is it really me?

Though I’m dizzy,
And so queasy,
I know to this challenge I’ll rise,
For I’m loved
By three pretty wonderful guys!

I feel lucky
Oh, so plucky,
For my friends are so awesome you see,
A whole village
Has been organized to assist me.

(VILLAGE)

La la la la la la LA la la

(ME)
I feel ditzy

I feel tired
I keep blogging to help me sustain,
Know your comments
Keep me from going insane.

(VILLAGE)
La la la la la la LA la la

(ME)

See the pretty girl in that mirror there?

(VILLAGE)

What mirror where?

(ME)

Where could that attractive girl be?

(VILLAGE)

Which? What? Where? Whom??

(ME)

Still a pretty smile,
Still a fighting spirit,
Still a little nuts
Still the same ‘ol me!

(VILLAGE)
Such a pretty me!

(ALL)

It’s been stunning

And amazing,
How this village has kept me so strong,
I’m so sappy
That I’m now bursting out in song!

MISALIGNED MERIDIANS

2006-04-15T15:31:00.000-06:00

Needlework
The trip to the acupuncturist/chiropractor was fascinating. She started out by checking my range of motion in my arms and my neck & back (they're fine, said I)... during which she pretty much started laughing at me. Apparently, I really don't have good range of motion in my left arm (from the surgery) and she touched this spot on my neck ("does this hurt?") and practically dropped me to my knees in pain. Who knew.
Then she tested my meridians, which has to do with the 7 (8?) acupuncture pulses but involves electronics and sounds like a metal detector. My left and right energies are misaligned. "Are most people uneven?" I asked her. "No." she responded. (...dammit). She did some pressure point stuff then took me into a back room to do the actual acupuncture. Some in my feet, legs, hands, arms, and (get this) ears. Some of them stung more than others going in (depends on the energy at the point, she told me) but really not bad at all (less than a shot-- especially the "this will hurt" ones I've been getting lately). Then, right before she left she told me "the needles will hurt if you move." (whaaa?) ...after which my nose started to itch furiously. I lay there for about 20 minutes in the dark and quiet that was it. Much more pleasant than say, an MRI. I definitely felt better afterwards, but I'm unclear if that's due to the acupuncture treatment or the fact that I was one more day away from chemo treatment. We'll see for sure next week. But in any event it was very interesting and I can only describe what I felt at the whole process as amazement that people know this stuff and wonder at what else is yet to be discovered about how this whole mind-body-spirit thing all works. Complimentary medicine indeed. I'm glad I went.

In the News
Breast cancer has the huge advantage that it is researched so extensively that the infamous "they" have discovered that not all tumors are alike. For example, I have what's called a hormone-receptor negative tumor which means that post-chemo drugs like tamoxifin won't work for me (although they really help the 2/3s of women who have estrogen receptor-positive tumors). ER negative folks typically have more aggressive tumors and it was also thought that they (we) have a worse prognosis. However, you may have heard the good news on NPR this past week:

Chemo Succeeds Against Hard-To-Treat Cancer
Study Focuses on Tumors Not Fueled by Estrogen
CHICAGO (April 11) - Research offers hopeful news to women whose breast cancers are typically more difficult to treat: Modern chemotherapy means more of them will survive than previously thought

Basically, exactly the chemo treatment I'm getting (dose dense) has been shown to reduce the risk of recurrence as much as 50%. Rock on. That makes it a little more palatable to feel ick.

Dodging Bullets
When I was in Navy ROTC one of my summer training stints involved a week in the Marines. (I know, it seemed surreal to me as well). The hardest day involved climbing up ropes with full gear on (during which I made it about 2/3rds of the way up and then fell flat on my back), storming a mock town, and low crawling under barbed wired while gunnery sergeants screamed at us ("Stay down maggots!") and shot (hopefully well over) our heads. I remember thinking after I fell into bed exhausted and bruised from the 22 hour day that if I had known ahead of time what I was in for I didn't think I would've been able to get out of bed that morning. Hmmm. (Good thing I have a 3-year old anti-snooze alarm).

Happy thought alert #4: 10:15 MST.

I CAN SEE THE TUNNEL

2006-04-12T14:36:00.000-06:00

My Mom has this amazing gift for inadvertent malapropisms-- i.e., mixing/messing up common expressions. Some classic examples: "Never bite a gift horse in the mouth," and "I wish I was a mouse on the wall." I have inherited this talent (e.g., "There's a light at the end of the rainbow.") In any event, my sister T uses the expression "I can see the tunnel" (on purpose, unlike our mom and me)... This is where I am. I don't quite see the light at the end (which, as carol keeps reminding me, may be a train, so maybe this is a good thing) but I'm well on the path (enough that I can't see the way back.)

Assignment TigerOxers: (new word of the day)
Monday is chemo #4. This is my last round of Adriamiacyn/Cytoxan (after which I have 4 rounds of Taxol). From what I've heard, the "AC" is worse than the "T" part as far as feeling icky goes, so next week should (hopefully) be the worst of it. Honestly, I'm dreading it-- especially considering how cumulatively worse the experiences have been so far. So, dear readers, I need your help. I need you to recommend (specific) fun things to do that don't involve much focus from me (e.g., movies-- good, books-- too hard). It'd be great if you want to even plan/join me... just know I won't be good company.
How's that for blatant pleading? But it's come to that. Pressure's on.

Alternative medicine:
My personal contribution to lowering the feelin'-crap-o-meter for next week involves (beyond just giving up and actually planning to take the whole week off of work ahead of time) some attempts at alternative/complimentary medicine. For example, I'm going to try acupuncture. I have my first appointment tomorrow, and another one next week. (reasontobehappy#48,576: not afraid of needles). I'm also going to try some "special" brownies. It will be a week a firsts. Should be an adventure.

A few more "things you learn":

I now have chemo-induced anemia (low red blood counts), so now I qualify for (and am receiving) another bi-weekly $6,000 dollar shot in addition to the one that is doing a great job keeping my white blood cells up. At first when they told me I was surprised, because I didn't feel that tired-- but the nurse pointed out that maybe I'm just used to being tired all the time because of the kids.
Once I read the handout about chemo-induced anemia I suddenly got many new side-effects, including dizziness and shortness of breath that were (shockingly) listed on the handout. I will not be reading anymore handouts.
Before, my eyes were pretty much brown. Now that I don't have brown (ok, any) hair, they're pretty much green.
I wax nostalgic about legacy hairballs I find around the house (which I will find from now until eternity, apparently)
Insomnia is a chemo side effect I didn't know about until I found out first hand this week. It was good to learn I wasn't going insane, since I'm pretty much exhausted most of the time and couldn't understand why I just couldn't go to sleep. Ambien Rocks.
At first I just scheduled acupuncture for after chemo, but it was pointed out to me that it's not like taking a pill, so I signed up for an appointment this week as well while I'm feeling ok.
Liam is remarkably unphased by his O2 leash and giggly as ever. Maybe even more so. (Maybe because he can breath now?) That baby is one huge tickle button.

RESILIENT AS A COCKROACH

2006-04-07T08:50:00.000-06:00

...I think I've found my new "animal".
Things are tracking back to "normal" here at the Nobel-Rudolph household (wherever that may be). The Liam-sitting schedule is filling up incredibly well (our village ROCKS) and he is pretty much back to his now-crawling, squealing self (plus the oxygen leash, which doesn't seem to hinder him much). I am finally bouncing back from this last chemo round-- unfortunately, it hit me harder than the others (as expected) but I'm looking forward to my "good week" here shortly. And unanticipated upshot to the whole wham situation is that I've completely lost any self-consciousness I had about my lack'o'hair. Again, it's all relative. I must say though, we get some incredible lookaways when we're out and about-- sweet liam and I, with his O2 and my bandana. It's like the Red Sea parting at times. (dearLORDwhat'swrongwithTHEM?!). When a kid at daycare asked what was wrong with Liam's face (he has stickers on his cheeks to hold the tubes on) the teacher sagely said "everyone has things they need to deal with, this is just his thing right now." Fair enough.
I've heard a lot of expressions lately, the two most common being "When it rains it pours" and "God doesn't give you more than you can handle." (Although someone corrected me on that second one, in that it should be "God doesn't allow more than you can handle, since God doesn't give people illnesses"-- seems a little biased that God can grant miracles but shirks the sickness rap, but I digress.) Good to know, really.
Somewhat not surprisingly, I've been hypersensitive to platitudes and the how are you doings from people who aren't really "in the know" (and that doesn't count you, dear readers). I know it's not fair, people really do mean well, but it's kind of like when I was really pregnant and would say things out loud and think, "was that my outside voice?" (let's just say I wasn't known for my tact at 36+ weeks, and apparently that saracasm demon wasn't exorcised with the baby...) A fun-for-me (if not exactly fair, but hey, they asked right?) way for me to deal with this is to try to make up something that would make them never want to ask me again (granted, I could tell them the truth, but it's more entertaining to be imaginative.) For example:
Them: "How are you?"
Me: "Well, I only vomited for 4 hours yesterday and that was good because it distracted me from the boils, which, by the way, you should see them, they're quite beautiful, really..."
I guess we all deal with things the best we can, day to day, and dark humor is where it's at for me right now (although images of the aluminum foil deflector posse has really helped this week- thanks :) ). On a lighter note:
Things to be happy about:

Flordia won the National Championship (which T attended, BTW) which bodes really well for the power of her lucky underwear, from which I assume all powers will now be redirected on me.
Mike and Andrea come back from their amazing journey to antartica today. How we've missed them!
Liam thinks my fuzzy head is hilarious. He loves rubbing it and I can get the biggest guffaws from him by putting him on top of my head and tickling his belly. Granted, he gets a bit of road rash on his tummy from the stubble, but everyone has their things they need to deal with, no?

I NEED ANOTHER ANIMAL

2006-04-02T20:40:00.000-06:00

I don't know if "Brave as a Tiger, Strong as an Ox" is going to cut it for me anymore. I need to add another animal. Potentially a zoo.
We've had a rough go the last few days. (Apparently I've picked up Jim's talent for understatement after being with him for so long.)
The plan: I actually planned my entire chemo schedule around this past weekend. I wanted to be as well as I possibly could because I had a pre-diagnosis Leadership Council meeting I was hosting in Denver scheduled for last Thursday and Friday. Leadership Council is a group of 16 people from across the corporation who get together at different locations around the country to develop presentations for our Executive Council (CEO, etc.) Basically, it's like the Apprentice without getting fired. I'm really glad to be a part of it and absolutely love meeting/hanging out with this group of 15 amazing people. It was extremely lucky that the meeting was planned in Denver, given my limited traveling schedule (I missed the last meeting in Miami after my surgery). In any event, 4 of them were going to stay for the weekend and come up to the condo. We had the kids set up to be with sisters/grandmas from Thurs-Fri. Jim and I were going to go out with the group to the Broker Thurs night, head up to the mountains Friday and have a kid-free weekend of hottubbing and skiing. Looking forward to this has been a beacon for me.
The reality: I left about 8 Wed night to stay in a hotel downtown so I could get to work before 7 to prepare for the meeting. Liam was fine. That night, however, he really had a rough night and Jim was up all night with him because he was sick and having trouble breathing. Thursday Jim brought Liam into the Pediatrician and they were sent to the hospital-- again. I was unreachable in my meetings, so jim had to deal with this all by himself. By the time I finally got in touch with Jim Thursday afternoon, Liam had been admitted into the hospital under extreme pressure from the doctor (to the hospital, not us). Liam has been into the emergency room 3 times before and sent home because he seems fine, and the dr. really wanted to get to the bottom of it. I was in the middle of this big meeting (which of course I could have left) but it's a really bad idea for me to be in a hospital, given everything. Thursday night Liam had a fever of 106 (I didn't know it could go that high).
Friday, Sat and Sunday were a waiting game of trying to get the specialists to see Liam (pulminologists, cardiologist) and get him in for tests (chest x-ray, EKG, echocardiogram). Jim got to where he could predict Liam's oncoming fevers by watching his pulse rise beforehand and they could keep them under control with tylenol and advil. They ultimately think he had the flu (Type B, because he got the vaccine) but that didn't solve the problem of why his pulseox always goes so low. I was able to go over Friday morning, Sat night and Sunday, and add a mask to my sexy bandana (amazing Liam could recognize me). My mom and Carol were there all day Friday and Saturday. I can't tell you how amazing they are. Jim would never leave because he wanted to make sure he talked to all the doctors. He is beyond amazing. I ended up going up to the mountains on Friday night and coming back Saturday afternoon. Admitting that I needed to do that for myself was really hard, but unbelievably necessary.
Finally, after all the tests, the doctors concluded that Liam has secondary pulmonary hypertension. Basically, his lungs have never had the chance to recover from some nasty "viral pneumonias" he got in Nov-Dec and although he can compensate when he's well, when he gets a cold, his lungs basically shut down. The long and short of it is that he has to be on oxygen for the next 2 months or so to give his lungs a chance to get better. The most important thing is he will get better, and ultimately it's a "good" diagnosis given some of the other things they were considering. The logistical challenge is can't go to daycare.
When I first heard this news I couldn't think. It was just too much. Once I found out that he could crawl and learn to walk and that it would be a much bigger pain for us than him it was a lot better. I'm basically home every other week anyway and I have all this time off. Family and friends are already mobilized... they just have to be deployed now, I guess (back to the battle thing, but hey). Ultimately, maybe it will be easier because now there will always be someone at home, to help take care of me and to cover if the kids get sick.
We're going to prove this "it take a village" thing.
I'm off to chemo #3 in a few minutes. Luckily I'm feeling a lot better from the cold I caught last Thurs (how's that for insult to injury?)
Jim says what you can do is do something that you wouldn't normally do that makes you happy ("read the paper before you go to work, buy a sports car") and send us a long some of those happy thoughts.
We will work it out.

THIS IS NOT MY BEAUTIFUL WIFE!

2006-03-28T12:07:00.000-07:00

I’ve had the Talking Head’s “Once in A Lifetime” lyrics running through my head lately. (on the rare occasions that I can get the freakishly insidious kids song “Pig On Her Head” out of my brain). As is typical of me and 80s songs, I didn’t remember the lyrics quite right (I thought the AC/DC song “Dirty Deeds Done Dirt Cheap” was actually saying something about a Thunder Chief until I was 32), but I remembered the “You may ask yourself—how did I get here?” part (thisisnotmybeautifulhouse, thisisnotmybeautifulwife) because sometimes I don’t want to be this person. I had a dream the other night that (I was high school age) I was bopping around doing whatever it is 16 year olds do, wearing this backless sundress, and I could actually feel my hair tickling down to the middle of my back (as it did, before). I woke up all groggy and kinda still in that 16 year old mentality until I went into the bathroom, got a glimpse of my stubbly head in the mirror-- WHAM back to my reality. Sometimes it just hits me like that, and my main (notsobrave notsostrong) thought it I just don’t want to be me, dealing with this. Believe me I know I don’t have a choice, and honestly, I’m happy with myself for doing the best I possibly can, considering-- but I guess that’s why the song is in my head. Funny thing is, when I actually looked at the lyrics, they were comforting somehow…

And you may ask yourself-well...how did I get here?

And you may ask yourself

How do I work this?

And you may tell yourself

This is not my beautiful house!

And you may tell yourself

This is not my beautiful wife!

Letting the days go by/let the water hold me down

Letting the days go by/water flowing underground

Into the blue again/after the money’s gone

Once in a lifetime/water flowing underground.

Same as it ever was...same as it ever was...same as it ever was...

Letting the days go by/let the water hold me down

Letting the days go by/water flowing underground

Into the blue again/in the silent water

Under the rocks and stones/there is water underground.

I had forgotten about the water part. Makes me happy. (I guess I did keep at least part of that dream-16-year-old mentality because I’m finding a lot of hidden meaning in song lyrics.)
Alexander really does think it’s cool that I have removable hair-- so much though, that he likes to tell me to “take off your hair mommy!” when we’re talking to pretty much anyone, including his teacher yesterday. After I told him “maybe later,” she asked him if he could take off his hair, to which he replied: “No, mines stuck. But when I’m big, I’m gonna have boobs, and I’m gonna take off my hair.”
Leave it to a 3 year old to remind me (again) about how great I have it.
Guess it truly is good to be me. (sameasiteverwas…)

A DAY IN THE LIFE

2006-03-25T16:58:00.000-07:00

Yesterday was a big day. Alexander had "snack day" and his 3rd bday party at school, and we all (me, jim, liam and alexander) went to my sister's friend's hair salon, Hair People, to get haircuts. My hair was yearning to be free, and grossing me out so I figured we might as well make it a family affair, since Jim and Alexander both needed haircuts and Liam looked like a hobbit since I wouldn't ever let anyone cut his hair. So now I look like a cross between GI Jane and a radiation victim, but as Lisa says, my wig is "way nicer than your hair ever looked-- styled, I mean." (ahh, sisters). Liam got the wiggles and only got part way through his haircut, but I think we both can live with it. The whole hair thing is kindof insult to injury. Chemo: feel crappy, look bad too. At least I got partial lack-of-vanity training for this in college, when I had to wear a Navy uniform once a week-- nothing like looking like a life-sized brown turd on a campus of J. Crew models.... but oh, the character I'm building. And xander is way impressed that he has a mom who can take her hair off (and he was pretty mad he couldn't shave his head too.)
My day in pictures:

my wall of happy thoughts

hair break for freedom

trying to sort out doctor receipts for the flex account

cupcakes for xander's party. He snuck one!

the perfectly shaped head?

post-hobbit liam

LOVED ONES RECALL LOCAL MAN'S COWARDLY BATTLE WITH CANCER

2006-03-21T17:43:00.000-07:00

This is a headline from the Onion "Dispatches From the Tenth Circle" book I received several years ago. (Other headlines include "Tenth Circle Added To Rapidly Growing Hell"). I typically think the Onion is hilarious, but this headline has always stuck with me and I've been thinking about it a lot lately.
Who is considered cowardly when battling cancer? Why is it a battle? If I don't "win" is it because I haven't fought hard enough? Can I do anything to fight harder? Why would I possibly want to pump more toxic chemicals into my body just because I don't feel bad enough? (oh, but I would). Yesterday my oncologist told me I was a "Poster Child for Chemo" because I've dealt so well with it so far. Am I supposed to be proud of this? (why am I?) Like people who get miserable sick are somehow worse people than I am somehow? Don't get me wrong, I'm thrilled that things have gone so well so far, but what happens when I do start to feel miserable (which I might) and my hair finally does fall out (which it is starting to) --does that mean I've done something wrong? Like I just didn't have a good enough attitude, or wasn't (*gasp*) getting in enough happy thoughts sent my way?
I've latched onto this Brave and Strong thing because I thought it would help me deal. And it has. I do truly believe that a positive attitude makes a big difference, at least to me. But I'm torn. Part of me wants to be cheery and optimistic and put up a brave face and be strong and witty and all that good stuff. Sometimes I feel like if I'm not then I'm letting everyone down... especially myself and my family. But even when I am upbeat I feel kinda guilty that I'm letting the cancer community down somehow... like playing into the potentially destructive "survival worship" embodied by the whole Lance Armstrong thing. Like it's important I explain that it just really does suck and is miserable sometimes. (And I have it good.)
I used to wear a "LiveStrong" bracelet in support of my friend, who's way more than I brave and strong father had pancreatic cancer. I stopped wearing it for some stupid reason (I think because alexander kept wanting to chew on it). I still have it, but won't wear it now. Because I would feel like a hypocrite. What's that about? It's like I can't (don't want to) identify with the whole cancer community because that would be acknowledging that in some way I am in this life and death fight (there's that battle thing again) that I truly want no part of--and, as my sister would say, don't even have time for? (like anyone has time for this crap).
Really, what I am supposed to say to those well-meaning people who see me in the hall, and, as they realize who they're looking at, stop walking and their faces shift somehow... they inevitably touch me on my arm (note, I'm not a touchy person), look intently into my eyes and say "how are you?!"
"Read the blog." I guess.
How am I? Still feeling remarkably well, really. Tired, and a bit too introspective, obviously. And lucky--that I do feel ok and have so much support and all that good stuff that I really shouldn't feel guilty about.
Better lucky than good, my grandfather always said.

IN OTHER NEWS...

2006-03-19T20:24:00.000-07:00

...xander dropped jim's keys down the elevator shaft at daycare. He was inconsolable (xander-- well, probably jim too) But they got them back with little problem. Jim let X carry the keys into school the following day. He held on tight.
...liam is days (maybe hours?) away from crawling. This is going to be the end of our lives as we know them, because a) liam is a "hmmm, I really wonder what this plant tastes like" kinda guy and b) all of xander's toys are small, plastic, and soon to be in reach.
...my mom ultimately signed the papers at the auto body shop, but refused to pay the $250 deductible. They said they will sue her. She said she'll see them on Judge Judy.
...we went to the tubing hill in Fraser when we were up in the mountains this weekend. This is no wussy parking lot sledding. You can't even see the tubers on part of the hill because it's so steep. 2 years olds aren't allowed, but luckily xander doesn't really answer strangers when they ask him questions so we went with the he's 3 theory. He loved it. I got to go too. (maybe there's some of me in him afterall).
...I feel (almost) perfect (if you neglect the fact that if I move my head a certain way it feels strange because there is a tube going from my chest into my jugular vein). We wonder if this means the chemo isn't working? Can they give me a higher dose because I'm handling what I've gotten so well? Am I insane?
...Duke and Florida are in the Sweet 16. Rock on!

Coordinated Happy Thought Alert #2: 9:45 treatment. No surgery beforehand this time. Rock on.

FUZZ UPDATE

2006-03-15T13:34:00.000-07:00

The other day I went to a "Look Good Feel Better" Session -- a two hour, hands on workshop that included lessons on makeup and ways to deal with hair loss. The wonderful woman who is a volunteer teacher for the course and recommended it to me said I should go "sooner than later." Apparently, the other ladies there didn't get that same advice, as they were all almost done with their treatment, and quite bald, (and way older than I am.) A bit shocking, but hey. I did get a ton of free makeup, (which brings up my household makeup quota to pretty much nothing+ a ton.) I think the other teacher of the course was a bit exasperated with me because I was so clueless-- ("clarifier? where does that go again?") I think I blew it in the beginning when we were talking about foundation and she complimented me on my use of it... "Uh, I don't wear makeup," I told her sheepishly.
But it is a really amazing program, and, among other things, I learned how to draw on eyebrows, which will come in super-handy when I don't have any. Plus they showed us some really cool things to do with half a t-shirt wrapped around your head. Who knew?
Speaking of hair, I still have all of mine (the short version anyway). I wake up every morning wondering if this will be the day that it starts to fall out in clumps and I'll just go ahead and shave it all off. At most I have another week. But I've enjoyed the short doo... lots of extra time in the morning, and now Liam has had to resort to trying to pull off my lips since he can't yank out my hair. Along those lines, I'm on a leg-shaving boycott because I mean really, I might as well take advantage of something about this. Jim is fairly horrified about this ("we'll have to change the sheets," he mutters). Something else I learned at that class is that your nose-hairs fall out, (I know, TMI-- sorry) and apparently this wrecks havoc on the allergies. Yet another "who knew" nugget (but happily not of the "WHAAA???!!" variety.) Jim keeps telling me I should take up swimming because I'll be so "sleek" (although I remind him that I could have more-easily achieved the same effect with the right kind of swim suit), but I digress...
So, in any event, it good program and the ladies looked great when they left. If you need any blue eyeshadow, please let me know-- (but I'm keeping the eyebrow pencil).

MOOD SWINGS

2006-03-12T19:23:00.000-07:00

Yesterday I received a "mood ring" from my sweet sister-in-law fresh from Antartica via New Zealand along with the following note:

Dearest Carolyn,
This mood ring chart will help you read exactly how you
are feeling. It should turn blue when you feel "normal" (whatever
that means) and purple when you feel very happy. However, when you
feel angry, it will leave a big fucking red mark right in the middle
of Jim's forehead.
You better warn him.

:)

Don't try this at home: I've been feeling remarkably good (yeah!) with the notable exception of an ill-advised adventure on Saturday. We drove up to Jim's mom's house in the mountains and took the civic instead of the subaru because it wasn't snowing when we left, and we're, well, cheap (and stupid). Needless to say, it was blizzard conditions by the time we got up there, and the poor little Civic made it about 1/2 way up their crazy dirt road before giving up. Jim set to the precarious task of trying to back down the road without sliding off the cliff... Liam was screaming and stressing him out, so I had the not-so-brilliant idea to just walk the 1/2 mile up the hill with the baby to go get help (I'm so brave, remember...) Yeah, well... 15 minutes later uphill through a blizzard with a screaming, wriggling baby (who has an uncanny knack for head-butting my chest where the port is) I arrived like "a little match girl" (as Carol put it) feeling the worst I've felt. I don't remember what color the mood ring was when I arrived, but Jim kept a fair distance, needless to say.
The lesson I learned (other than to try not to be an idiot, a tall order, apparently) was that I should really really try not to over-exert myself (and that I really do feel well, relatively). An excuse to be lazy-- yippee!!

(JUST SOME OF) THE THINGS YOU LEARN...

2006-03-10T11:05:00.000-07:00

I would've had a better reaction to chemo had I been a bigger drinker in my past (I am not making this up-- my oncologist told me!). (damn clean living) At this point I just feel like I have a hangover all the time, which is probably what most of my Navy friends felt like all the way through college, and they did fine....
Blog-link connections are far reaching, inspiring, and powerful-- thank you jeannette for getting me hooked into this amazing community!
Apparently, my skin tone is "medium", as explained to me by the "Look Good Feed Better" sign-up lady over the phone (thus confirming I will have a lot to learn when I attend the class on Monday).
I have cheekbones (as reported to me by a co-worker upon seeing my new hairdo :) )
Asking for/accepting help is a good thing.
Alexander can sing "Monkeys jumping on the bed" for over an hour without stopping.
I get cold a lot faster without all that hair.
If you don't take off your pants when they tell you to when changing into those oh-so-lovely gowns at the hospital, they probably won't make you.
I have the perfectly shaped head.
I have incredibly wonderful family/friends/colleagues (...but this I knew)

8 LITTLE MONKEYS...

2006-03-09T09:02:00.000-07:00

jumping on a bed. One fell off and broke his head. Doctor came over and he said- NO MORE MONKEYS JUMPING ON THE BED!
One down!
It wasn't too bad. Likely due to all of the well-timed support... I can't tell you how much all of your comments/well wishes/happy thoughts, etc. mean to me. Thanks so much!
The port, although good to have, makes me feel a bit like one of the BORG on star treck. I have a tube that runs from up under my collar bone into my jugular vein then down into my heart (?). In any event, I feel/look kinda freaky-scifish. But better then getting IVs all the time.
The actual chemo session wasn't bad at all. I just sat in a chair and hung out with jim. (Jim pointed out I was about 1/3 the age of most people in there) They "pushed" this huge (red) vial of Adriamycin into my port over about 5 minutes. Then they dripped in the Cytoxan over about an hour... along with a bunch of anti-nausea drugs. (As the nurse pointed out, they gave me "everything they've got" for anti-nausea.) Didn't hurt, no immediate effects-- I was just tired from the port surgery in the morning.
It's strange to sit around and wait to see how your body's going to react. It's all so unknown. The good news is that almost all of the symptoms are treatable... better yet, I didn't seem to have that bad of a reaction to anything. Just kinda like a minor hangover-- not bad.
Yesterday, however, was bad in that it overstretched my physical capability and great in that it proved what a tremendous support network we have. I went to work in the morning, during which I felt fine and enjoyed getting lots of compliments on my "new do". In the afternoon I took Liam to the dr. because he's been out of sorts and seemed like he had an ear infection. Sure enough, he does, but they had trouble getting a good pulse ox while he was at the doctor and ended up having him sent to the emergency room in an ambulance. Poor little guy!
As has happened several times in the past, as soon as he got to the hospital, he perked up and seemed fine. Luckily, my mom met me there, as I was pretty well spent because I didn't get a chance to eat and it's still really hard for me to hold liam with port so new and all.
In any event, we ended up just leaving the hospital after several hours of not being seen by a doctor and liam being ok (and me going downhill). Lisa and Tracey picked up my car from the place so it wouln't get towed (I went in the ambulance), Dad picked up the prescriptions, our neighbor brought over dinner, Annie went to pick up jim's mom at the airport, since we couldn't go out, and our pediatrician actually made a house call to make sure that Liam was ok (which he pretty much is). My mom is watching liam today.
So, as for me, as a result of yesterday's exploits, I'm exhausted. What I would do without everyone I have no idea. Luckily I don't have to worry about that.

KEEPING THE WOLVES AT BAY

2006-03-05T21:21:00.000-07:00

I really don't understand how people with short hair don't rub their heads all the time... I'm so fuzzy! So Operation Fuzz Head went well. Honestly, I was quite nervous and sorta freaking out right at the beginning, but after she cut off a huge ponytail on the top of my head and pointed out I had a really impressive mullet, I made it over this hair-loss hurdle. Yippee! Physically it's strange to not have my hair to deal with, man do I get bad "bed head", and I'm going to have to switch from my beloved Duke visor to a baseball cap, but all and all, not too bad. (Those detachable ponytails are in the mail!)

So my sister Lisa gave us a huge break last night and watched both kids overnight(!). We went gambling up in Central City. After immediately losing $10 after 10 spins of the $1 slots, I ended up winning over $20 on the nickel slots (!!). There's some lesson there about appreciating the small things, I imagine...

Coordinated Happy Though Alert: I go in for the port surgery tomorrow at 7:30 am. I honestly have very little idea what it will entail, but I think the actually surgery will be around 8:30 and I will be released around 10:30 (?). My chemo appointment is at 1pm (mountain time :) ) and is scheduled for about 2 hours.

Did you ever read any of those Jack Londonish books about the guys up in Alaska out in the middle of nowhere, having crazy adventures and trying not to freeze and/or get eaten by a bear? I kind of feel like one of those guys during the evening after supper... I'm out in the wilderness, but I've built a huge fire and I'm all full and toasty... but the sun will go down soon and I know the wolves are out howling and circling. But I've got a lot of wood and I'm pretty sure I'll make it until morning... but underneath the bravado, I'm pretty darn scared of the wolves.

Just help me keep the fire stoked, kay?

herewego...

HAIR TODAY, GONE TOMORROW

2006-03-03T08:58:00.000-07:00

As expected, things are falling into place. Work is caught up, prescriptions are ordered (let's hear it for good health insurance-- $16 copay for a $316 (3 pill) prescription-- and that's just one prescription for one chemo round... mind boggling) I have a dentist appointment at 10 and at 11:30 I'm going to get my hair cut off. This go round, I'm just going to get it cut really short (at least 10 inches cut off, so I can donate it) and I will shave it off in a few weeks. Should be an adventure. The last time I had short hair I was 14 and I decided to grow it out because people couldn't tell I was a girl (I had a long & ugly awkward phase from about 4 to 15). Should be interesting.
A friend of mine, who is pretty much bald, told me it's no big deal-- he oughtta know. Fair enough, I guess-- for him... but it's hard to explain what HAIR means unless you've had A LOT of it for a LONG time. You have a lot of things that accompany it (jim is forever complaining about the barrettes, rubberbands, headbands etc. everywhere... although I never can seem to find one!) Even someone as low maintenance as I am spends a lot of time dealing with it. You can use it to predict the weather (curly = rain on the way). It gets everywhere (e.g., when jim and I went on our trip around the world, and stayed on for the second 6 months without me, he was still finding my hair in/on all his stuff even after we'd been on different continents for months). Alexander and I use it as our secret tunnel and it's a neverending peek-a-boo source of amusement for Liam (at least what he hasn't yanked out yet). You don't often need a hat. You can use it to hide behind. When I was in the navy I had to wear my hair pulled back and up off my collar-- once when I was on leave off the ship, they didn't want to let me back on because they didn't even recognize me with my hair down. Wasn't there even a musical about hair in the 70's?

Let it fly in the breeze

And get caught in the trees

Give a home to the fleas in my hair

A home for fleas

A hive for bees

A nest for birds

There ain't no words

For the beauty, the splendor, the wonder

Of my...

Hair, hair, hair, hair, hair, hair, hair

Flow it,

show it

Long as God can grow it

My hair

(Gotta love the Internet) ...before you start commenting (ben) I do NOT have fleas in my hair... and my favorite verse:

Oh say can you see
My eyes if you can
Then my hair's too short!

Lisa and I are going wig shopping after I get it cut. I'm looking forward to it. A chance to reinvent myself. How many times in life do you give yourself the license to do that?

And better yet, it's on my terms. Best yet, some little kid somewhere will be able to play peek-a-boo with my hair too.

OF OKC, PREGNANCY PARALLELS & IRONY

2006-03-01T20:32:00.000-07:00

Friends in low places
I just returned from a quick business trip to Oklahoma City. I've traveled there something like 15 or 20 times during the past few years, so it's sort of like walking into the bar at Cheers (e.g., on my last trip there, I brought Liam, and Gail, the secretary, watched him during my meetings-- how's that for a family friendly office?). In any event, it was great to be face-to-face with people I talk with on the phone almost every day, and to bask in the well wishes of a lot of those (I'm guessing) anonymous time-off donors. I was greeted at the door with a bear hug from the indescribable office manager (larger than life doesn't do him justice) who whisked me into his office and gave me a really wonderful mix cd he'd created for me, and an "Oklahoma T-shirt" which reads: "Ted Kennedy's Car Has Killed More People Than Have Been Killed at GITMO." (He thinks I'm too liberal). I was very touched. (I guess sometimes treasures come in unexpected ways and forms.)

What do you mean it's March?
I feel like I'm running out of time. When am I going to go to the dentist? get new contacts? get my hair cut (off)? pick up my prescriptions? finish my projects at work? be able to travel? I know my life isn't going to come to a screeching halt on Monday, but I know it will change, at least for a bit, and although mentally I think I'm doing pretty well, I'm feeling a bit logistically challenged (especially since we're going to the mountains this weekend). But if there's one thing I learned from maternity leave (alexander's coming 3 weeks early) it's that everything will wait, no worries-- (except for getting the prescriptions part, that I need to find time for). There are a surprising number of parallels I can draw between having chemo and being pregnant/having a baby (but at least I know the due date on this one). Lots of doctor visits... lots of positive attention... believing whole-heartedly in positive attitude & medicine (likely in large and equal doses) getting me through discomfort... I still remember being very physically uncomfortable & extremely tired while I was pregnant, (for a similar amount of time as a the chemo, I think) so hopefully that was good training... and ultimately that it's all so very very worth it. (And at least this go round I'll be able to fit into cars.)

Isn't it ironic, doncha think?
One of the chemo side-effects that I was dreading above most others was the possibility of getting mouth sores, because every so often I'll get a cold sore and I hate them. Today, for the first time in over a year, I got a cold sore-- likely because I got sunburned in Mexico. Go figure.

BUENO

2006-02-28T20:26:00.000-07:00

Hola amigos! Ok, it's not really fair for me to write anything in spanish, as the place we stayed in Puerto Vallarta was almost exclusively US/Canadian, and I kind of feel guilty about going to a different country and pretty much experiencing none of the culture... but hey.
We had a great time on vacation, largely due to the fact that we had over three times as many adults as kids... Definitely the way to travel with small children. With the minor exception of alexander getting sick and puking on us on the plane ride home, it was near perfect. We really enjoyed the pool (Liam is a true water baby) and racing the waves in and out on the beach. A highlight was the whale watching tour where we actually saw multiple whales breaching up out of the water all around us... a truly spectacular spectacle. How something so huge could hurl itself out of the water like that, or, even more befuddling, why (I like to think it's for the shear joy of it) is a mystery that makes me smile at the thought. Alexander was literally quivering with excitement. How cool that little-kid-spirit is contagious!
For a few days there (and now still), breast cancer wasn't the first thing that hit me in the morning, or the last thing I tried to force out of my head before I fell asleep. For the next few days at least, I'll be the one with the strangely distributed sections of sunburn (e.g., the triangle on my ankle) that I somehow missed with the sunscreen, rather than the bruises on my arm from the blood draws. And during the next few months, when I'm feeling icky, I can think of those incredible whales that can project themselves into the sky just for the splash, and that will help, I think.
Dad thinks we should make this an annual event... so for the next many many years to come, as we're sitting on the beach, we can reflect back on this first February Family Trip, and this situation, which seems so all-encompassing now, will be just a footnote-- and more importantly, another reason to enjoy being with my family that much more.

ON THE ROAD AGAIN

2006-02-22T22:19:00.000-07:00

We leave for the much anticipated trip to Mexico tomorrow morning... sun, beach, whale watching (alexander is obsessed with sea mammals) and fun with the whole family (thank god the rest of them are coming otherwise we'd never be able to deal with all the "kid crap" between just the two of us). This trip is even more amazing to me because I booked the tickets less than an hour before I found out my diagnosis. I doubt we would have tried to schedule something after finding out, but it turned out to be perfect timing. Yeah for small (and large) blessings.
Speaking of which, I have (count 'em) NO doctor's appointments scheduled for next week (first time since early January). I met with the oncologist of choice today, and WE HAVE A PLAN:
I will start "dose dense" chemo March 6th... it will continue for 8 rounds every 2 weeks, so there will be plenty of opportunity to sign up to be my "chemo buddy" and accompany me to treatment. (The chairs are really nice and they have good snacks...).
I will get a port (likely in above my collar bone) the day I start chemo so I don't wreck my veins from too many injections (thereby preserving them for my recreational IV drug habit). Today I got prescriptions for 4 different kinds of anti-nausea medicines and a wig (it's considered a "prosthesis").
Bring it on. (but first, vacation...)

Mom update: For those of you who have been asking, no my mom has not gone back to the autobody shop, and no she's not in jail (yet)-- maybe they'll extradite her?

FINDING CHEMO

2006-02-19T20:38:00.000-07:00

I'm back from a relaxing weekend up in the mountains where I proved that lifting liam, while "legal," has its consequences. That's ok. It's worth it.
Friday saw me receiving a radioactive boob woman power booster with a bone scan, EKG, ecocardiogram and chest xray. All of these tests (along with a lot of blood work drawn earlier) were to establish a baseline for the chemo, and to check off all of the prerequisites to potentially join a drug trial.
My next step is to select an oncologist, chemo regimen and schedule. I have met with 2 oncologists-- You'll be happy to hear (I was) that the second one I met with didn't agree with the metastasis risk calculated in the "SMI" as discussed earlier, but also had a lower efficacy percentage for chemotherapy... We didn't get into specific numbers, which is good, but the result was the same: The most aggressive chemo is my best option, and statistics help define the path, but don't determine the outcome.
Both doctors recommended the "dose dense" AC (Adromycan/Cytoxan) every 2 weeks x 4 rounds [You have to love the prospect of getting injected with something that has the name "toxan" included] + Taxol every 2 weeks x 4 rounds (16 weeks total). From what I understand the "dose dense" (before they did it once every three weeks) potentially is better at killing cancer, but not for the faint of heart (literally) as there is small risk of congestive heart failure... but very small for young, healthy folks (yeah! finally, something good about being so young!).
Drug trials: I have the options of entering the "NSABP B-38" (catchy name, no?) research study in which I would be randomized into one of three arms: 1) the option listed above; 2) the option listed above plus the trial drug Gamzor; or 3) the three drugs included in option 1) given all together (TAC) once every 3 weeks for 6 rounds. We were told that option 3) is considered equivalent to 1) and is preferred by about 35% of doctors (but neither of the ones I talked to). I originally thought "what the heck" about the drug trial, until the oncologist last week said the TAC option is more toxic (hence the 3 weeks between I guess), a fact conveniently left out by the first oncologist. Hmmm.
I also may have the option of joining a different trial that includes option 1) plus a drug called Avartin (sorry if I'm spelling these wrong, but I can't read the doctors writing) The Av drug is not a chemo drug, but a new type of approach that has been shown to enhance the success of chemo drugs with few side effects. It would be great if I could get in this trial, but it's a question of timing, and I'm not sure it will work out. Could I get the Av drug without the trial? Not really, because it hasn't been shown to be effective yet (hence the trial) and costs $150,000.
Speaking of drug costs, the Neulasta injections that I will be getting (at least every round) to increase my white blood cell counts cost over $6,000 per injection. From what I understand, while people who are un/underinsured can get the chemo drugs, they can't get the Neulasta.
So tomorrow I meet with Dr. Data (oncologist #1) again to go over all of the lab tests. Dr. Data has the advantage of the best reputation and a sole focus on breast cancer (to the point he's known as "Dr. Breast"-- how's that for a title to impress people at college reunions?) However, right now I'm leaning toward the other doctor, for several reasons: She seemed more realistic about the side effects, I think she sees me as a person rather than a piece of data, she didn't dismiss ideas that weren't her first choice out of hand, and her office is within walking distance of my house. But again, we learned different (and useful) things from both doctors, to the point that either way I'm confident I'll be getting great care.
Mostly I'm just ready to get things scheduled and move onto this next step.
But first, I get to go to MEXICO :)

IT'S ALL ABOUT ME...

2006-02-16T19:51:00.000-07:00

...notsomuch. Yesterday I actually had a not blog-worthy day. Got up at 4 with Liam, dealt with a grumpy x, went to work all day, came home, ate dinner, and went to bed. Isn't that great?
Today we had another oncologist appointment, which I will describe later, but today I thought I'd write about something DIFFERENT than me & bc for a (welcome) change:

My mom's car was stolen on halloween. They found it wrecked about a week later and it's been in the body shop ever since. As is common, she received TERRIBLE customer service from the body shop-- they never got back to her and made tons of false promises about when it would be ready. (The original estimate was 1.5 weeks). A few days ago (3 months later), her car was finally done. When she arrived, the body shop guy told her she needed to sign all the paperwork and pay the deductible. Before she followed him into the office, she asked for the keys so she could check out her car-- and proceeded to get in and drive away. The body shop guy has left her tons of increasingly frantic messages.
She says she'll get back to him in a few months!

As my friend told me after hearing this story, "At least you come by it honestly." :)

LOVE/LIAM IS IN THE AIR

2006-02-14T20:35:00.000-07:00

Happy Valentine's Day!
I have been cleared to pick up Liam :) In an unanticipated happy twist of fate, his non-chub (we were worried that he was too skinny for awhile) puts him below the 20 pound limit. Woo hoo!
The follow up surgeon appointment went well today. The bandages are off and all is looking good. She told me that arm pain is normal, which immediately made it hurt less. She said it due to aggravating the nerve, and that Advil won't work, but I will seek the advice of another doctor who is a bigger believer in better living through chemistry. She said I will be feeling much better by 6 weeks, and back to myself in 3-6 months (minus the chemo, of course). Skiing is out for the season (anyone need a 4-pass?) but I'm good to go swimming in mexico. Mostly I'm just thrilled to be back in action with the little guy.

Tonight we had the best valentine's day treat. A daycare bud of Liam's mom brought us an incredible dinner... apricot glazed chicken and roasted potatoes, salad... she made special breaded baked chicken for xander and home made baby food for liam, plus an amazing icecream cake that was so pretty I took a picture. Unreal! We have seen each other in daycare over the past few months, but mostly just to say hello-- I continue to be bowled over by the kindness and generosity of new & old friends alike.

Jim & I (microwavers that we are) are in awe of this delivery, especially considering that this woman is a lawyer and has a 6 month old. How does she do it? (It's all we can do to make fish sticks).
While closing my eyes to fully savor another yummy bite I told Jim, "You married the wrong woman."
"I know." he replied.
Eyes now popped open, I scolded him "You better tell me something good about me right now!"
"You have great hair," he responded.

God, I love that man.

I think the fact that he would say that combined with the fact that I found it hilarious is one of the (many) reasons we're married.
Cheers!

THE ROAD AHEAD

2006-02-13T15:17:00.000-07:00

Today was my first day back to work in almost 2 weeks. I was psyched to go.
I have considered the strangeness of having colleagues with whom I do try to maintain a level of professionalism reading my innermost thoughts and fears. How weird to have people that I work with (some of whom I've never met in person, since most of the people with whom I work are not local) KNOW me in such a way, especially when I don't know much about them. But what the heck (note that I'm not swearing today, so I must be in a better mood)... It seems to be working for me to go with the "maximize positive vibes through openness" policy, so I'm going to go with it. Besides, I've received more than a few supportive and bolstering emails from people that I never would've presumed to bug with all this information. My approach was confirmed today when I went back to the office... so many heartfelt "glad to have you back"s that made me even happier to be back-- and how nice to know that I didn't have to explain everything multiple times. That anyone who wants to, already KNOWS-- so we can just move on to the fun stuff, like talking about our family trip to Mexico next week, or all the crazy trouble their kids got into over the weekend.
So, in the spirit of keeping all interested in the loop, here's my schedule for the next few weeks (complete with subtitles):

Tues 2/14: Follow-up appointment with surgeon (e.g., Why is my arm still hurting, & Please give me the ok to pick up my kid)
Thurs 2/16: 2nd opinion ocologist appointment (e.g., Lets talk options, NOT statistics)
Fri 2/17: Slew of all day pre-chemo tests/exams (e.g., Radioactive Boob Woman power booster, & Tested as a Lab Rat)
Fri-Sun: up to the mountains (e.g., Just call me Bode... just kidding dad)
Mon 2/20: 1st opinion oncologist follow-up (e.g., Let's get this show on the road) after which (I think?) I will have a much better idea of schedule/duration & which drug trial I'll actually be in (if any).
Thurs 2/23(Jim's bday)- Mon 2/27: Puerto Vallarta Mexico with jim, x, liam, mom, dad, t, lisa & jarod (e.g., X sees a Whale in Person)

Hair update: The other day I had the bright (if delayed) idea that I should shave off all of my hair and donate it to Locks of Love, a non-profit organization who provides hair pieces to kids suffering from medical hair loss. When I asked a friend about this idea, she asked me (I'm not making this up):
"Is your hair virgin?" To which I replied, baffled, "Well, I have 2 kids."
Turns out that won't exempt me, as she meant no dye or highlights. (Yes, apparently, I do have "virgin hair" unlike almost of all my (women) friends.) Who knew that my lack-of-style would actually turn out to be a good thing? The program requires 10" minimum-- which I thought wouldn't work, but turns out, when you start from the top (or bottom?) my hair ranges from about 10 to 17 inches. The things you learn. Anyway, the idea makes me happy.

In other amusing news, the other day Alexander tripped and hit his eye on a log. (stay with me for the amusing part) He got a really impressive scraped up black eye ("He looks like he's been in a fight" says my dad) that has been bugging him for the past few days. Yesterday when I told him to stop picking/rubbing at it he asked me "Mommy, can I go to the doctor and get it out?"
Oh, if only it were that easy :)

BELOW THE BELT

2006-02-12T21:17:00.000-07:00

Today I went for a walk with my dad because he wanted to talk to me. Before we set off he had me lift a weight (with my right arm) and had me guess how much it weighed. I saw it, I told him, 6.6 pounds. On our walk he talked about how I have been joking about my (and this is the technical term) "Might As Well Eat Crap" theory-- that since I'll be poisoning my body to rid it of all evil, I might as well eat whatever I want in the meantime, since I'll be purging myself anyway. He wanted to make sure that I was kidding (I was-- sort of) and told me that he has been thinking a lot about nutrition. How the books say that exercise and being "at the right weight" is a major factor in reducing recurrence. (I know this. I read the books to.) He didn't want me to wait until 6 months from now to start "living the clean life", and potentially end up starting from further away from where I am now. He generously offered to help me find and pay for a nutrionist, because, as most of us know first hand, wanting to eat well and knowing how to/finding the time/effort to do so are often in different galaxies.
And then he said (and this is where I lost it) something like I felt how heavy that weight was, and it is hard for my body to carry that weight on it up and down the stairs. Alexander is 35 pounds. I am acutely aware of how very "heavy" that amount of weight is, and I've spent a fair amount of time thinking about how frustrating/difficult it is to carry twice that up the stairs when I carry X up to go to sleep. I know that I am hardly in the minority in my concern/torment about this issue.
"I know you are trying to help me," I told him, on the verge of hysterics, "but I wouldn't want to be called fat on my best day, and this is not my best day. I've got a lot going on in the next few months, and it's all I can do to face what's coming, let alone count calories."
Today I am as upset/sad as I have been so far. I don't really understand why this would upset me more than say, oh, being told I have a higher than I had anticipated chance of the cancer metastisizing in the next few years. I know that my dad is just trying to help and protect me, and being at a good weight is something he's really good at, and he just wants to share that with me. I have no doubt he has nothing but the very best of intentions.
It's just such a sensitive subject. Not just the overweight thing, (although that's a doozy). More importantly for me right now it's just, I don't know, the compounding losses. This morning some sweet soul (or likely two with the initials R&R) left doughnuts on our porch. What a fantastic treat for a lazy sunday morning! I want to enjoy these for the wonderful love-wrapped-in-sugar gift they are, not be banned from them as something poisonous. (Luckily I ate one before I went on the walk-- YUM). I didn't want to give up breastfeeding. I don't want to think about how heavy the things are that I'm lifting, or make sure I never get blood pressure taken from my left arm. I don't want to have to think about every single thing I eat and drink. I don't want to wait for test results every 6 months for the rest of my life. I don't even want to see how cute I will look with really short hair (note that I grew my hair out when I was 15 because everyone thought I was a boy). I really really don't want to be so scared.
Wah wah wah. Whiney as a walrus?
I do so truly believe that all will be well. But there is grief in this journey.
And today I'm just sad.

THE GOOD, THE BAD, & THE UGLY

2006-02-11T10:52:00.000-07:00

I went to the "goldenhands" of oncologists yesterday. Honestly, I was dreading the appointment because pretty much all appointment of late have resulted in those "WHAA?!!" realizations, and although I've wrapped my mind around the fact that I will definitely be getting chemo, and have even joked about being sick and bald, I hadn't really thought about what exactly that would entail for me over the next six months, other than it couldn't be that much worse than being pregnant, right? (minus the bald thing). In any event, another firehose education with some mixed results.
The Not So Good: Remember that "now I'm cancer free" concept? Again, I was smoking something, according to the "Sedlacek Metastictic Index/SMI" (Sedlacek is the doctor) that uses tumor characteristics to quantify the risk of 10 year metastasis with local therapy alone... (Metastisis means the cancer spreads to the bones/lungs/liver. At this point, they can't do much about it when it gets to that.)
2% risk for each 1mm up to 100mm --> 20%
1.5% risk for each 1mm of tumor from 10 to 35mm --> 30% (Note that I had thought my tumor was around 2cm (20mm), turns out it was more like 3cm, but I still need to clarify this with the surgeon-- how could all of the scans been so far off?)
8% for each lymph node in 1-3LN+ patients --> 8% (remember that negative/positive node thing, turns out I count as positive in at least 1, darn)
adverse pronostic factors:
ER negative (check)
PR negative (check)
HER2/nue positive (I'm negative-- yippee! but double edged sword, they actually have this new miracle drug that treats this really well)
High Ki-67 and/or %S-phase (e.g., aggressive tumor) (check)
Multiple total risk by 2.5X for 3 adverse prognostic factors. 58% x 2.5 = >100%
...if the cumulative risk of metastasis at 10 years is greater that 100% than take 58% of the 10 year risk to determine 5 year risk = 84%
Well, shit.
(Note that I almost NEVER swear, to the point that my mom even offered me money to say the "S Word" at one point, but if there was ever an appropriate time...)
Bottom line: I REALLY REALLY need chemotherapy. According to the doctors index, there is certainly that lurking cell somewhere within me. The good news is that chemo works well and with it will reduce the chance of metastasis by 75% (this is the number he threw out). My immediate translation of that probably-not-so-scientific analysis is that I have a 1 in 4 chance of getting terminal cancer in the next 10 years. There, I said it. Worse fears confirmed.
I repeat-- Well, shit.
As an engineer, my inclination is to latch onto these numbers as something concrete and real. I want to do more research to determine with more confidence (note that although this is a straightforward formula, I have not seen risk quantified like this in any of the other books I've read, which puts it more into the "rule of thumb" rather than "absolute fact" world.) That 75% reduction due to chemo he threw out there plagues me... Where did that come from? Is he overestimating because he's biased? How is success (still don't like "survival rate" terminology) affected by age, health, and a billion other factors? (Not the least of which-- (maybe the most?) is attitude and support network?)
Ultimately though, IT JUST DOESN'T MATTER.
It doesn't matter if it's 99% or 1%. It does me (and everyone else around me) no good to dwell on negative possibilities. All that matters is what I can do. And I will do everything I possibly can-- I will get the most aggressive chemo they can offer me (but that's nothing new, and that's where the good news comes in, see below.) I will amp up the healthy lifestyle-- eat right, and exercise (this step alone will likely benefit my entire family in the long run more than if this never would've happened) and whatever else comes up. I know this all sounds trite, and I can't deny that I'm having a hard time right now... heck, I still can't pick up my kids for goodness sake... but I will get there.
I guess it comes down to the question of would you change anything in your life if you knew you were going to die in the next 10 years?
My initial reactions is-- not really.
Now, how cool is that?!
The Good: Dr. SMI laid out several different chemotherapy paths that are appropriate for someone in my situation. From my appointment with the other oncologist, I "knew" I would need 8 rounds of chemo, likely one dose every 3 weeks (3x8 = 24 weeks = 6 months). What we learned from Dr. SMI is that there is a new "dose dense" method where the 8 rounds are given every 2 weeks. (16 weeks) There is an alternative where a different group of chemicals is given every 3 weeks, but for 6 rounds (18 weeks). More importantly, he said the anti-nausea drugs are such that only 50% of patients get sick, and if I am in the sick half, the first go-round will be the worst as they can change doses so that it gets better every time. Most importantly, I will get this drug called "Neulasta" that will increase my white blood counts enough that I won't have to worry so much about infection-- e.g., we don't have to chose between taking the kids out of daycare and banning them from being around me. He said that I would be sick for only a day or two after each treatment-- That for four months, compared to being miserable sick, and worse, in danger of infection, for 6 months is fantastic! (again, it's all so relative).
The Ugly: I'm definitely going to lose my hair. Probably by mid-March I will be bald. Something that I'd never really thought about before alexander was born was head shape. I have been surprised at how many (and there have been a lot) people have complimented alexander on this quality, as in "my, what a beautifully shaped head he has!" (I did not know this was a cosmetic feature of interest, but hey). I have always maintained that this feature comes from ME, since in every other sense xander is a mini-jim. Now I get to prove it :)

p.s. If you're reading this PLEASE post a comment/send me an email etc. I wasn't kidding about that feedback thing. I need you guys.

SHOCK & AWE

2006-02-08T16:36:00.000-07:00

As I wrote earlier, I had less than 10 hours of vacation/sick time accrued due to maternity leave over the summer and Liam being in the hospital around Christmas. Although I was not worried that I would lose my job by taking time off for surgery/treatment, I have to admit that the idea of taking a lot of unpaid leave, although possible, made the prospect of taking the recommended 2 weeks off after surgery and god knows what after treatments start daunting.
In any event, I ultimately decided to take advantage of my company's paid-time-off donation program-- where people can donate their vacation time into my sick-time account. I was quite hesitant to do this because a big part of me felt it was like panhandling. Ultimately, though, I did it, in the spirit of admitting that in this case I do actually need help, and the recognition that I would be more likely to take (likely needed) time off if I had some banked.
In any event, I checked with HR today to see if I had enough time to take off the remainder of the week (turns out those doctors aren't really kidding around with those post-surgery recommendations)...
So far (since Friday) people have donated over 260 hours (6+ weeks) of their time to my account. Note that this is not sick time. They've donated time they could be on vacation so that I can stay home and get better. I am humbled by and in awe of this. I asked the HR rep if I can have a list of names so I can write thank you notes, but she said I can't.
All I can do, I guess, is hope that some of you are reading this... I hope you know what a difference your generosity makes to me, especially today, when I was feeling particularly ineffectual and like the road ahead may be a bit too long for me to handle. I want the sweet neighbor who just dropped off another incredible dinner to understand that us being able to just sit down to dinner without the hassle of preparing anything makes it easier for us to relax and enjoy another (less) hectic evening with the kids. Our friend who took the car today to get the oil changed should know that jim will be that much less stressed knowing that he doesn't have to find nonexistent time to do that particularly nagging chore. I want people who have sent cards to know that they are all stuck up on the wall in the kitchen and they brighten every day. And you should know that when I can't sleep I come downstairs and read your comments and emails. They fortify and encourage me during particularly scary times.
My mother-in-law keeps reminding me that "it takes a village"-- and we are lucky enough to have one to help on days like yesterday, when both kids were sick and needed to stay home from school. Lucky, lucky me. Thanks to the Internet, I've gone global.
Thank you for everything. It makes all the difference.

20 POUNDS BY TUESDAY

2006-02-08T16:02:00.000-07:00

So I called the doctor today to see if she was, I don't know, maybe kidding about the lifting restriction. Because, you see, I really am physically capable of lifting heavy objects (e.g., a crying baby) it just hurts some (not unbearable). I have almost normal range of motion in my arm/shoulder. At this point, it's just fairly sore/swollen (TMI Alert: and I have a multi-colored breast, to enhance my radioactive boob persona, I suppose) enough to keep me awake at night, or wake me up if I roll over, but again, not really that bad. It turns out that apparently yes, I can indeed greatly hinder my long term recovery by lifting heavy things (particularly squirmy ones), BUT the good news is she said I could lift "20 pound in 2 weeks"-- so even impatient me can make it until Tuesday, right?
There is also a good possibility that Jim and I both may gain 20 pounds by Tuesday. We have received so many wonderful meals that when one of my friends asked another friend what they could do for us she recommended getting us a deep freezer :) All this food is a special treat because Jim and I, although many things, are not exactly chefs (more like "assemblers/microwavers" on the best of days) so not having to prepare anything and get to eat great food is fantastic. I feel fortunate I had the surgery before the chemo so I actually get a chance to enjoy it :)

WHO NODES?

2006-02-08T08:21:00.000-07:00

How quickly we fall into jargonland... Just think, less than a month ago I didn't even know what a node was, let alone care if it was positive or negative... to clarify, "nodes" refer to lymph nodes. From my (limited) understanding, this is the first place that breast cancer cells spread to (typically the ones under the armpit), and the extent to which and number of nodes that are affected help to "stage" or define the extent of the disease and spread. "Node negative" means that there has been no spread to the lymph nodes and the cancer likely hasn't spread. "Node Positive" means that one or more nodes has tested positive for cancer.
During surgery, they identified and did initial testing on my "sentinel" nodes-- the lymph nodes that the dye/radioactive tracer injected into the tumor were shown to travel to first. If these are negative, there is a high probability (>95%) that the cancer has not spread anywhere else. Typically this also means that a full auxiliary node (i.e., all the nodes under the armpit) dissection/removal is not necessary-- which is what I had hoped for initially, because it's a less invasive surgery with fewer long-term effects. However, the PET scan showed enough potential abnormalities that the surgeon opted ahead of time to do the full auxiliary dissection (which turned out to be 9 nodes removed from me-- it's different for everyone, isn't that odd?... I think the average is something like 15)
The "on-site" sentinel node tests showed that my nodes were negative, indicating that the cancer had not spread anywhere, which is why I was so happy. However, the on-site testing catches everything about 80% of the time. Further pathology found some "micrometastese" (0.3mm) and a few random cancer cells in my sentinel lymph nodes, and (I'm fairly sure about this but not certain) nothing in the other lymph nodes. So basically I'm somewhere between positive and negative... (Node neutral?) The good news about this is that even though it was there, it's not much... and more importantly, I didn't have to make the hard decision about whether or not to go back into surgery and get the rest of my lymph nodes removed/tested-- because even though they are negative, I wouldn't have known that for sure.
I asked the Doctor if she would consider me "cancer free" since the tumor and the lymph nodes have been removed. She told me: "I can't say you're cancer free until you're dead-- and not necessarily from cancer." I appreciate her candor, but I have to admit that that statement has kept me up a night or two thinking about that rogue cell hiding somewhere in my body. But everyone has that same risk. Not everyone has a PET scan that shows an all-clear everywhere else, and even better, not everyone is going to get chemotherapy with the intention of hunting down and knocking out any (hopefully nonexistent) rogue cell. So there.

BACK FROM EXILE

2006-02-07T20:50:00.000-07:00

I'm back from my self-imposed exile to the mountains. No email, no web access-- I kinda felt like I was letting everyone down by being out of touch for so long, but nothing to be done. I was only going to stay until Sunday, but after Jim came up with the boys on Sat and I had my first quality time with them since the surgery I realized I was better off away from them. I can't take care of my kids and it sucks. Picture, if you will, baby boy on the floor crying for his mommy hands outstretched reaching for her to pick him up and she can't do it. Next scene: rambunctious almost-3 year old preparing to jump from the couch into mom's lap, dad zooms in, warning in a I'm-not-messing-around voice "don't touch her!" (exit sad almost-3-year old, stage left). I feel like it's worse when I'm around because Jim (who has more superpowers than Radioactive Boob Woman and Superman put together) is trying to take care of them and make sure I don't do something stupid and hurt myself, which is a valid fear.
Speaking of doing stupid things, that label that says "Do Not Drink Alcoholic Beverages" on the drug container is NOT KIDDING. Yesterday morning was the last time I needed Vicoden. 8+ hours later we went out to dinner. I had a margarhita with (a big) dinner, thinking "what the heck, done breastfeeding and off the meds..." After dinner my friends were looking around a store when I felt really miserable and my vision started to tunnel. "Something's wrong." I told them, right before I almost passed out and they carry/led me out into the fresh air ("don't grab her left side" always-thinking pam says). Quick recovery, thank goodness, but apparently my party-hearty days are still off in the horizon.
In better news, I have discovered Sudoku-- a fun/addictive logic puzzle-- I'm really optimistic I will be better at it once I'm less fuzzy-brained.
Told you I am an optimist.

WHO CARES ABOUT NODES WHEN YOU'VE GOT THE KING OF SQUIRM?

2006-02-03T08:13:00.000-07:00

I went back home to my "real life" last night. Not before my mom fixed up all of my dressings and helped give me a shower. We were joking about how much it was like when I give X a bath-- helping to put on my clothes and washing my hair (at least I didn't whine about it). Moms never stop being Moms like that, I guess.
I arrived home to tons of cards, lots of food, beautiful flowers, and a tree on my front porch. How awesome are my friends?
The Dr. called soon after I got back to report on the pathology. They got the whole tumor, clean margins. But they did find a little spreading in the lymph nodes. Again, upsetting, but I'm not sure that it changes anything, other than it's really good they took out the lymph nodes to begin with because otherwise I might've had to go back into surgery. They confirmed it's an agressive type of cancer that will definitely require chemotherapy, but I knew that. I think I can say I'm cancer free now? (but I'm scared to jinx myself)
So great to see the little guys. Nothing like a full body happy squirm from a 9 month old to lift the spirits... and X, with all of his words and stories and random burst into dance moves...
X: "Mommy are you sick?"
C: "Not really. Just got that bump out and now I'm a little tired and sore."
X: "Do you want it back?"
C: "Not so much."
I can hold Liam, but not lift/shift him, which is really limiting considering he's the king of squirm, but it was enough to just see them. Wow are they tiring though, and I wasn't even doing anything. (Yes, mom and dad, you were right that I should stay away for a bit).
This morning I get to go get that drain out (YEAH!! faster than I'd anticipated) and this afternoon my friends are coming in from the east coast and we're going up to the mountains for a trip that's been planned since the summer. No skiing for me, but I can watch movies with a mountain view, right?
I've used up almost all of the pain pills, so I'm assuming I won't need them much anymore... Maybe I will go snowshoing this weekend?
(just kidding dad)

NOTES FROM THE OTHER SIDE

2006-02-02T09:18:00.000-07:00

Almost 36 hours post surgery and I'm feeling... I don't know... weepy? I would've described myself as chipper until maybe last night, but I guess all the drugs cycling in/out of my system have hijacked my happy thoughts. I'm not sad or pessimistic or anything. Just weepy and tired and sore. Like a campbell's soup commercial would make me burst into tears.
I've been staying at my Mom's (she even let me stay in her bed... now there's true parental devotion for you) and I almost feel like I'm on a different planet, but I don't know that I could've handled the commotion that is our household just yet. I was thinking I'd go by daycare today to see the little guys, but I guess I'm not quite up for it yet. It's so hard for me to allow myself this time to not feel ok, especially since everything went so well, but I need to give myself a break. (Easier said than done)
In any event, everything went as planned the day of the surgery. In the morning I was commenting to jim that it would be the last time in awhile that I would be able to lie on my left side. "You should give me a backrub then," he suggested. Good thinking :) He also offered to make me eggs and steamed milk, which would've been a really nice offer except I was prohibited from eating anything after midnight the night before. At least he kept me chuckling.
About 9 I got wheeled over (now I know what the kids in the strollers feel like!) to the breast center where in about 3 minutes the dr. inserted a needle, a wire, and then a radioactive injection into el lumpo. So added to my increased superpowers, I could also pickup radiowaves there for awhile... The wire was a surprise to me, (didn't hurt or anything) and was put there to help the dr. with locating the mass. My mom, dad, jim and I hung out in the preop room (very nice)for a few hours until the anetheisiologist came in to discuss all of the risks-- we were confused about the risk of retinal scratching and the dr. thought it was amusing that we would be discussing that rather than the risk of, oh, death. A quick checkin with the surgeon ("ok if I play Coldplay?"-- now that comment confused my parents) then wheeled off.
I had to take off my glasses, so couldn't see anything, and that made it easier (softer?) somehow. Down we went through several series of double doors from the patient preop where we started to what seemed to be more and more industrial areas. Ladies with big trashbins scooting out of our way, gaggles of drs scooting by discussing a party planned for the weekend. I half expected to see some guy welding in the corner or something. Then into the operating room. What seemed like 20 people around hooking things up, shifting me around, putting massage boots on my legs to prevent blood clots (those were cool) a guy in a mask confirming it was my left breast, right? Then shooting me up with something that made me feel like I had had 3 margaritas (allright!) the dr. holding my hand, looking at me with reassuring eyes... "it will all be fine..." Coldplay in the background... then...
Wake up Carolyn.
squint at the clock. After 4pm. That's late. can't... open... eyes... try again...
first thought: I don't feel too bad. second thought: how did they get these clothes (supertight bra) on me? third thought: they weren't kidding about the sore throat. Dr there. "Were they negative?" I ask. "Yes" she smiles. "Fantastic." I mumble. sweet relief washes over me.
Jim in the room (they weren't expecting to be able to see me so soon, but I guess I stabilized really quickly) "Hey bright eyes" he say.
Not for long, as the percaset starts to kick in. I was on my way to my mom's in less than an hour. Blurry drive home. Up a lot that night, but not too painful. Just awake.
So glad to read all of your messages. Jim said some of you got me a tree. Makes me smile just to think about that.
Time for more drugs and more 24 (this is a good show to watch on drugs, it seems) Jack is trying to stop the virus. I'm trying to stop being weepy.
We've all got our own battles, I suppose.

A NOTE FROM T

2006-01-31T16:49:00.000-07:00

I envisioned the Live Updates page as a real-time scoreboard, with the whole "Refresh if this page doesn't update in 30 seconds" note up top. Alas, it didn't quite work out that way ;)

If you didn't catch the latest on the update page, here it is:

4:30 p.m. Update - Carolyn is now out of surgery. Everything went extremely well. The lump was removed, as well as the lymph nodes from that side. Initial tests of the sentinal node were negative, which is great news! Carolyn will be going to Nurse Linda's Recovery Unit tonight if she feels well enough to go home. Stay tuned to her blog for further updates!

If Cari could blog from her hospital bed:

"mmm, uh.. huh..wha?? Drugs.. Drugs are good!"

Thank you all for your support!
T (Carolyn's sister)

LUCKY

2006-01-30T07:01:00.000-07:00

I recently learned that a good friend of mine has MS, and has had it for almost 10 years. She is one of the most giving, creative, involved and cheerful people I’ve ever met. I by no means mean to imply that people with MS can’t be all these things—hardly. I was just amazed at how she has not let this diagnosis define her. It’s just something she deals with… has been for a long time, and will for a long time to come. Likewise, I have two friends who both only have one hand. Both of these woman are among the most stellar I have met in my life… regardless of any “handicap” (although you would never think to describe these woman as such). Another close friend has nasty back problems that required surgery last year and make it hard for him to walk sometimes, but he’s up in the mountains every weekend skiing with his kids… and my sister, who also has long standing back issues, comforted me, “my shoulder is numb right now, it’s not that bad” when I told her about the potential loss of feeling from surgery… I guess my point is that so many people have their own (often staggering) issues to deal with, and everyone handles everything so well… and all of them are asking what they can do for me. It’s humbling.
Today, I feel perfect. I have no symptoms. I have this lump in my breast which I can feel, but doesn’t hurt at all (when I first got the diagnosis I was certain I could feel it almost pulsing with malignancy, but I think that was part biopsy side-effect and mostly mind tricks). Both my kids and my husband are healthy (for a change). Work isn’t even that stressful (especially since I’ve canceled all of my business trips!).
Tomorrow I will go through significant surgery, but nothing compared to what my sister and my friend who have had back surgery have been through. Chemo is horrifying, but relatively short term. And radiation, well, at that point, I think it will mostly just be an inconvenience.
Sometimes I wonder if I’m making too big a deal of this? Am I letting it define me? Am I taking advantage of the cancer diagnosis to shamelessly solicit support when there are so many people that deal with so much more on such a long term basis without asking for anything?
Granted, after tomorrow, I likely won’t be fully myself again until around my birthday in October. (this is obviously more of a distant concept than a reality to me—that denial thing again, I guess) But the other day, I watched a fantastic movie, “Murderball”, a documentary about paraplegics who play rugby in the paraolympics, and was reminded again, that it’s just all so, so relative.

THEY WON’T MISS YOU WHEN YOU’RE GONE

2006-01-29T12:53:00.000-07:00

Pretty much everyone has been incredible—saying wonderful things, being compassionate, offering to help… It’s been amazing. I can’t tell you how much the support and good wishes have meant and will continue to mean. But, I have been able to shock impressively insensitive responses out a few people. Most notably xander’s new teacher. I wanted to let her know about my situation just in case Xander said anything or the kids in his class happened to notice that I didn’t have any hair come summer… I even thought that perhaps I could talk to the kids about it, and it could be one of those “practical life” sessions Montessori schools tout so avidly.
“Oh,” she shook her head solemnly “we don’t like to mention breasts in front of the children.”
“Besides,” she told me, “you’re not around much, so they won’t miss you when you’re gone.”
Maybe she should go work with Dr. Goldenhands? :)

BLOGGING 101

2006-01-27T13:18:00.000-07:00

It has come to my attention that several people reading this are new to blogs and don't realize that this is an interactive media.
Please leave comments to any/all posts by clicking on the comment link on the bottom of each entry.
I am a sucker for feedback, and I currently feel like I'm writing into the void. Plus, you have a lot to say too, I think.

Also, we were asked what jim's (who is just a little bit more reticent than I am) would be. Here you go:

Carolyn has cancer.
It stinks.
All will be well.

Guess that's it in a nutshell.

I'M NOT BRAVE, I'M IN DENIAL

2006-01-26T20:12:00.000-07:00

We met with the surgeon for a pre-op visit today... me and my entourage of jim, mom and dad. We were all squished into an examining room and I had to sit up on the table, even though all they did was take my blood pressure (at least I didn't have to wear a gown). Don't you think doctor's offices should have conference rooms?
It was a bit of a shocker. I truly thought I was going to be able to go snowshoing the weekend after the surgery-- I had given up on the notion of skiing, but thought I would be good to go for the weekend and back to work on Monday. I was, apparently, smoking something.
I don't think I am being polyannaish (is that a word?) when I think these things, I think I'm just an idiot. I'm getting annoyed with myself for continuously being told information to which my reaction is "WHAA??!!" but I guess shock in smaller doses is more palatable. If I found this all out on day one I'd probably have dissolved into an unresponsive quivering mass, so maybe denial is a good thing?
In any event, we found out that my surgery will be more extensive than anticipated-- thanks to the "suspicious" PET scan findings she's going to go ahead and do the full axilliary node dissection (i.e., they take out 15ish lymph nodes) instead of just doing the sentinel node dissection, in which they just take out one. If the sentinel node had been positive for cancer during the surgery, they would've gone ahead and done the full thing anyway, so it was always an option, but again, that denial thing. The main disadvantage of taking out all of these lymph nodes is that I will likely have some permanent numbness under my arm, which the doctor said could make shaving my armpits a challenge (darn) and risk of lymphoma (severe swelling) in my arm and hand. The good thing is that jim is going to have to carry the really heavy pack when we go backpacking from now on (as opposed to before, when I carried everything), and I have an excuse not to do a lot of gardening.
The fervent hope is they take everything out and it turns out to all be negative, which will be a relief to know. I'll still get the maximum rounds of chemo though. But I would definitely prefer everything that follows this surgery be preventative rather than treatment.
So, here's what they said will happen: (Warning, potentially graphic content to follow) I'll go in about 7am on Tues to Rose Medical Center. Around 9am I'll get taken over to get another radioactive dye injection (YES, more power for my superhero alterego RADIOACTIVE BOOB WOMAN!) I'll sit around for 3 hours waiting for the dye to do it's thing. The surgery will start at 12:30 (time your happy thoughts!) and will take around 2 hours. Dr. Miller will first do the sentinel node dissection (I guess she's still going to do it eventhough they're going to take everything out), then remove (get this) approximately a raquetball sized chunk out of my breast. Then they'll take the nodes out. They'll know during the surgery if the sentinel node is positive (think NEGATIVE here). I'll spend about 3 hours being monitored, and then likely go home (this is outpatient surgery, if you can believe that) with a compression bra, 2 incisions, and a drain that looks like a plastic grenade on a tube stuck in my left armpit. I am fairly horrified by the drain concept for some reason, but am sure I will be ok once faced with the necessity and reality of it.
No driving for 10-14 days. Likely no working for the same. Don't pick up anything heavier than 20 pounds (i.e., your children) for 4-6 weeks. No heartrate raising exercise (e.g., riding your bike to work) for the same amount of time. (Once again) WHAA??!! How are we going to get the kids to/from school? What am I going to do for work?I have exactly 9.6 hours of time off accrued thanks to maternity leave last summer and liam being sick last month... How can I possibly ask Jim to work AND take care of the kids solo AND take care of me? (...braveasatigerstrongasanox...yeahnotsomuch)
When Jim goes out in the cold, he always shivers uncontrollably for a minute or so ("I'm adjusting," he says) and then is fine. I think maybe that's how I am with all this stuff. All will be well. Several of my friends had c-sections and couldn't lift anything (including their kids) for weeks. They did fine. I used to travel a lot and was gone more than 10-14 days, and jim did fine without me, and that was without so many people bringing us food and offering to help. And work, well, I just took 3 months off with liam with no detrimental effects, no worries... and the grenade drain? Granted, still horrifying, but my mom's a nurse and dealt with them all the time. No problem, she says. She says she can also take it out for me-- but I'll likely take a pass on that one.
Brave as a Tiger. Strong as an Ox.

PET SCANS & OTHER STRANGE ANIMALS

2006-01-25T20:24:00.000-07:00

So now my dad has the radiation technicians calling him. Thanks to that, we got the PET scan results as early as possible in the morning:
"There is a hypermetabolic mass measuring 21mm in diameter consistent with the known breast cancer. Mildly elevated metabolic activity is seen within at least two lymph nodes in the left axilla. The largest of these measures 6 mm in diameter. The finding is suspicious for early changes of malignant adenopathy. No findings suspicious for distant metastatic disease are seen. No bone metastases are identified."
Quite good news, considering the sensitivity of the test, and the number of false positives I've heard about. Honestly, I was kind of dreading getting the results a little bit. I'm quite optimistic as a rule, but I guess I haven't quite bounced back from the shock two weeks ago. It's so odd, when I get these test results back, it's like I'm in high school waiting for my SAT scores... and then when something turns up less than ideal (>2cm tumor, estrogen receptor negative) I feel terribly disappointed, like I failed, somehow. What's that about?

On a happier note, Jim's brother Mikey, who is currently working with his wife Andrea in antartica, (frozenteachers.blogspot.com) sent me the following:

"I was thinking if Jim and the kids wanted to make their own blogs they might use some of the following:

Jim: Nimble as a goat, elusive as a fish.
Busy as a beaver, large as a horse.

X: graceful as a penguin, fast as a cheetah.

Liam: Slithers like a seal, wails like a hyena."

Other submissions? :)

A NEW KIND OF SUPERHERO

2006-01-23T20:42:00.000-07:00

This morning I had a PET scan... yet another fascinating medical procedure. I went in to the (I'm not joking) double wide trailer where they keep the machine, and the technician gave me an injection of the radioactive sugar material. Then I sat there for 30 minutes to give myself time to glow. After I was sufficiently suffused, they had me lie down on a table that was less wide then I am. The put an elastic around my toes "to keep them from flopping around" and velcroed my arms in place above my head. It actually wasn't that uncomfortable. I spent the next 40 minutes or so lying still (I'm becoming an expert at immobility)while the machine scanned sections of my body. I found out it's actually a CAT/PET scan-- the CAT scan is used to draw a background picture of my organs, and the PET scan is a bunch of dots that measures the relative metabolic rate of the stuff within me. How do they come up with this stuff?
I had been told that I "couldn't cuddle my children" for 24 hours after the test. Jim wanted to know if it would be safe for him to sleep next to me, and I was duly impressed by his sensitivity. In any event, I've decided on an alternate career path as RADIOACTIVE BOOB WOMAN. Out of curiosity, when I went to work, I checked it with our resident radiological expert (an unforeseen advantage of working at an environmental engineering company) to see if he could measure me with a Geiger counter. When I went in there, he was testing out his equipment on an orange fiesta-wear plate (did you know those are coated with uranium?). In any event, I screwed up his test, because when I walked into the room, the measurement went through the roof. It went from something like 10,000 to over 2million counts per minute. We could see with his program what I was emitting based on the frequency peak (not surprisingly it was what they told me they had injected me with, but good to have an impartial verification). The isotope has a 2 hour half life (i.e., half is gone in 2 hours) but when I went back in his office at 3 and he did measure me with a Geiger counter I was still 100 times background level. He said if I was on a jobsite I would be considered a hazard. The only reason that I am so glib about this is because I know that the danger from radiation comes from both dose and duration, and obviously mine was a short-term exposure (and here I thought I would never use the information I had to study for the radiological section on the PE exam)... but needless to say, I took a night off from cuddling the kiddos.

HOUSTON, WE HAVE LIFTOFF

2006-01-22T18:36:00.000-07:00

I can’t believe the learning curve that we’ve ascended in the past week or so. We’ve gone from knowing virtually nothing to becoming well educated enough to be comfortable understanding the information we have to make a well-informed decision about the best path forward. (no wonder I can’t sleep). The surgery is scheduled for Tues Jan 31st. (adios, el lumpo!)—after a few week hiatus (and that well-timed family trip to Mexico) I’ll have 6 months of chemo and 5 weeks of radiation, not necessarily in that order. It will be quite a year, but now that the path is laid I can start walking it. Even though it’s not what I would’ve picked for my 2006 goals, it is my reality and we will make the best of it. I heard from Kelly’s today show interview that cancer patients who share more and get more help do better, so I’m embracing that route. We will get the web page up, hopefully today, and I will send out an email to everyone I think would want to know tomorrow. I’ll try to arrange things at work so that I don’t get kicked off the fast track. I will try to allow myself to ask for the help we will surely need, graciously accept what I’m offered, and face this thing with the optimism, dignity, and good humor that I know I’m capable of. Brave as a tiger, strong as an ox, right?
Bring it on.

BUT WILL HE LOVE ME FOR MY MIND?

2006-01-22T03:30:00.000-07:00

So I’m giving up breastfeeding. I’ve been cutting back over the past week or so, with the goal of being finished by the PET scan on Monday morning. I thought Friday morning would be my last hurrah, but last night (sun morning) I was up horribly swollen and uncomfortable and when Liam woke up at 4am (I had already been up for 2 hours in the lovely land of body too uncomfortable/mind too alert to sleep (not a real friendly place). I “gave in”. How sad is it that I felt guilty about reliving my pain and nourishing my child… In the scheme of things, giving up breastfeeding seems so small and insignificant, and given that I seem to be facing these other challenges (surgery/chemo) with much better humor (maybe they’re just too indistinct for me to worry about yet) I’m a little perplexed at my reaction. I was probably going to stop in the next month or two, plus it’s a pain in both the literal and figurative sense, especially now that Liam’s easily distracted and sporting teeth. But you see, I’m that baby’s WORLD. When I walk in a room, he’ll cry until I hold him (granted, that gets annoying, but it’s flattering too). Alexander was a daddy’s boy, almost from the first, but Liam, at least for now, is my guy. I always joked it was my boobs he loved, and not me. But what if it’s true? (and it has to be on some level). I’m losing the biggest tool in my arsenal. I can ALWAYS calm him down, make him happy, and usually get him to sleep by nursing. I admit I used it as a crutch, but I figure if I was bringing that god forsaken pump everywhere (“Where are the cables?” was the #1 stupid response among many from airport security guys) and going over to daycare pretty much EVERY DAY to nurse him, I deserved to garner every benefit possible. I have no doubt that if I would’ve gone the mastectomy route jim would’ve still loved me, but as I switch from nursing to the bottle I feel like I’ve failed liam somehow, and he’ll forget why I’m his favorite. I don’t understand why this seemingly small sacrifice is so hard. I feel stupid and frustrated that it bothers me so much. But it does. And it is what it is. On the good side, at least jim and I can split the middle of the night duties now. That’s something, I guess.

YOU HAVE AN OWIE IN YOUR BOOB?

2006-01-20T06:33:00.000-07:00

The other morning, unprompted, Alexander (3 in March) asked me, curious, “Mommy, you have an owie in your boob?” We hadn’t spoken to him directly about anything, but hadn’t rushed him out of the room either, so I wasn’t too surprised.
“Actually,” I told him, “I have a bump. Do you want to feel it?” Big eyes and a solemn nod as I guided his little fingers to my spot of infamy.
After which he lifted up his shirt and pointed to his own chest “Yook Mommy, I have a bump too.” “Nope” I told him “Only mommys can get these bumps, and I’m going to go to the hospital to get it fixed”.
“Daddy get a bump?”
“Nope.”
“Xander get a bump?”
“Nope.”
His face crumpled and he threw himself down on his pillow “I want a bump!!” he wailed.
(This is the same reaction that he had when I told him my sisters’ dog parker couldn’t come to Mexico with the family).
I guess he’s not too worried about me :)

I CAN FIT YOU IN AFTER MY COLONOSCOPY

2006-01-19T18:18:00.000-07:00

Thurs I saw the “golden hands” surgeon. I am glad we got a second opinion because we received some good information (mostly confirming (again) that the lumpectomy + rad and mastectomy are equivalent—he said even in regard to recurrence rates, which I still don’t believe, but hey) and absolutely confirmed what I had guessed before I ever met him: that I will be better off with Dr. Miller. Golden Hands was nice enough. He did have me change into a paper gown before he got in there, and had me sitting in it for awhile before he examined me. Those things don’t exactly up your comfort/confidence level, let alone with my poor dad in the room who is trying desperately to look anywhere but at me—after a some initial discussion and a quick examination (yes, Houston, we have a lump) it was back into clothes (thank goodness) for the rest of the consultation. He didn’t really explain anything, or give us any literature. (He was the first doctor to look at my films though). He did answer questions well, and was more personable than I anticipated, but gave absolutely no indication that he saw me as a real person who just might be going through something traumatic. Instead, he regaled us with stories about how he was president of some association… blah blah… and was the leader in gall bladder surgery… blah blah… and, to add in some spice told us a story about a woman he treated who had 10 positive lymph nodes and a 5% chance of survival but is doing ok now. (although all indications are that my lymph nodes are clean, I still don’t know for sure what my status is) Is he KIDDING? The kicker was when my mom asked him about his schedule (note that I didn’t ask) and he pulled out his daytimer, flipped through it and started, “well, I can’t do it Monday or Tuesday—do you want to know why?” (not really) “because I’m having a colonoscopy. I’ve just turned 50 and they have to check these things out.” (I care, I really do—Hello, woman with cancer sitting in front of you!) “Thurs out because I’m going to the blah blah conference, of which I am the chair of blah blah… but I can fit you in on Wednesday before my golf game.” Ok, so the golf game part is made up, but it wouldn’t have surprised me. I have no doubt that he is a talented surgeon who does an excellent job. But sorry, Dr. Golden Hands, Stephanie’s getting my “business” (as he put it.)
Just because I literally have to put my life in the hands of someone with a valuable skill that I don’t possess, does not mean that I do not deserve respect, consideration, and quite frankly, a little compassion and recognition that this situation, even if common to them, is quite a world rocker for me. Luckily, I’m in the position where I don’t have to accept any less – at a different time and/or place in my life I wouldn’t have been so lucky. But I always have been led a charmed life, and why should this be any different?

IT IS WHAT IT IS (& HOW TO LIE WITH STATISTICS)

2006-01-18T18:17:00.000-07:00

On Wed, we met with an oncologist. She had spiky blond hair and red leather boots, and an extremely dry (or possibly no) sense of humor. She kept looking at my dad like he was nuts whenever he tried to joke with her. We all liked her a lot. She also took time out to explain a lot of information to us, except now we have heard/read most of it before, so that was encouraging. I was still uncertain about the relative risk of a lumpectomy vs. mastectomy. Research shows that the success rate (note that I use “success” in lieu of “survival” because I prefer the semantics) for lumpectomy and radiation vs. mastectomy is equivalent. She confirmed this. This (proven) fact does not intuitively make a lot of sense to me, as it seems as if you remove the source then a recurrence would be less likely. I’ve heard the number 1% cumulative annual recurrence rate bandied about, and the oncologist said that this would indicate a 30% chance of recurrence in 30 years. I know this to be absolutely not true, as someone who has taken (and taught) a lot of statistics courses. (Warning, math alert, potentially skip the following) Basically, what she was saying that I would have 100% chance of having a recurrence in the next 100 years… but there’s rarely a 100% chance of anything. Another way to think about it: when you flip a coin, you have a 50% chance of getting a tails. That doesn’t mean that if you flip a coin twice, you have a 100% chance of getting a tails (you actually have a 75% chance). Plus, I would imagine (considering some of the statistics I’ve come across in the environmental field) that 1% number may have a heck of an associated variability. So, even if I try to break it down to relative risk, which I have the luxury of being able to understand, the following are still unclear:
- what is the true “risk” of recurrence for both options?
- is the recurrence rate (not the success rate) different for lump/rad vs. masectomy? We’ve heard different answers on this.
- If I go with the lumpectomy option, can I deal with getting checked all the time?
- If I get checked all the time, are we likely to discover any future issue at a very early stage?
As I start to list these, I realize that there are potentially countless uncertainties, several of which can’t be answered (or will be answered differently by different people). When I first entered this process, I thought that I would go the double mastectomy route because I am so young and I would hate to think there was something else I could’ve done if faced with this in the future. But farther down the path I have done a 180, if it truly is an equivalent option (or at least quite close) to opt for the much less severe alternative, why would I not go for it? I don’t believe I have a huge attachment to my breasts (I’m hardly a swimsuit model) but I also don’t want to unnecessarily go through major surgery that will keep me out of work for an extended period of time and much more importantly, not allow me to pick up my children for 6 weeks. But I worry, am I being short sighted? But then again, is it short sighted to think that I may not want to deal with the daily reminder of “having sandbags on my chest” (as Jewell, who has first hand experience, put it) for the rest of my life? I could drive myself insane considering the different pros and cons and potentially second guessing myself. Luckily, I won’t. Although I’ve hardly been faced with many challenges in my life, I have (like most people) had to make a number of life-altering decisions. In all of those cases, the answer eventually became very clear to me, and in every case, it turned out to be the right decision (because that’s the decision I made the best of).
However, one decision it turns out I won’t have to make it whether or not to have chemotherapy. The concept of chemotherapy originally scared me more than the idea of a double mastectomy, but in the short span of a week, I’ve completely switched. I assume that’s because I learned that the former was a distinct possibility and the latter could potentially be avoided, but still) The new information I learned from the oncologist is that I will need the “max” 8 rounds of chemotherapy. 6 months worth. Followed by 5 weeks of radiation. So much for being better by Jim’s birthday (Feb 23rd) which was my first oh-so-naive assertion, and my hypothetically more conservative hope to do the tri-for the cure triathlon this summer. But, it is what it is. And knowing the treatment path makes it more bearable, somehow. And like jim told me, “who ever thought you would be bald before I would?” At least my hair will grow back!

CIRCUS OF CANCER

2006-01-17T18:04:00.000-07:00

Tues I worked at home, which I often do, but apparently that’s not the greatest idea at the moment. I always joke with my sister that she’s wussy because she needs to be around people, but apparently that’s one of the side effects of my diagnosis. Alone with your thoughts is not always the best place to be, I’m finding. However, the highlight of the day was learning about Kelly Corrigan through her website www.circusofcancer.org. She is a young mother of 2 who is a Stage III survivor; her web page is for friends of women with breast cancer. It has some great ideas and beautifully written pieces about her experience. When I emailed her to see if she would mind me referencing her site, she almost immediately wrote back with much appreciated offers of help and encouragement.
One of the major advantages of this situation is that I get to meet these extraordinary brave, strong, and amazing women who I likely wouldn't have under different circumstances.

SPREADING THE NEWS

2006-01-16T18:02:00.000-07:00

It’s finally dawned on me that this is something I’m going to have to tell people about. Especially jim’s family. I hadn’t told them anything so far because I didn’t want them to worry unnecessarily. I still didn’t want them to worry, but I couldn’t justify not telling them. Carol and Larry came over Monday night after Carol returned from an out of state trip. We worried about telling Carol (jim’s mom)—this is a woman who cried for 2 days when there was a extremely small likelihood that Liam had cystic fibrosis… As has been our growing tradition, we were, well, if not chipper, then non-emotional and optimistic. “It will be fine.” I told her as she started to cry “Don’t worry.” I assured her. (I don’t want to feel responsible for making people sad, and I really don’t want people to feel sorry for me.) I heard her though, when she told me (kindly) that I need to allow her her emotions. I guess I thought that if I am upbeat, strong, brave and optimistic in front of everyone, that I could spare them some sadness and worry. I truly think it helps, but I guess I just need to admit that this, well, just sucks. People (especially those who love me) have different ways of coping, and grief has a role in that.

We made a lot of phone calls the next night to spread the news. It’s just so odd, “I’ve got some crazy news to tell you…”, to which the response is invariably “you’re pregnant?”, “Ummm… not exactly.” I’m getting to the point of forgetting who I tell what, and honestly kind of sick of talking about it. All of these people are hugely important to us and deserve to know and to have their questions answered (this is all a shocking and new to them, as it was to us) but after awhile it just seems, well, rote, as jim aptly put it. How can cancer be rote? We need to get up the web page as soon as possible. Then people can get as much (or as little) information as they want without feeling like they’re imposing.

IT’S (JUST) A TUMOR!

2006-01-16T15:59:00.000-07:00

After a long weekend spent with my reasonableness trying to wrestle down my racing mind from dwelling on such horrifying (and useless) things as survival statistics and possible metastasis, and getting a crash course on, well, everything (although I stayed away from the web), I was happy to go to work on Monday for the distraction. The highlight of the weekend was Saturday morning jim and I had the chance to meet Jewell, a friend of my dad’s who had a double mastectomy and chemo 3 years ago. We’d never met, but she dropped everything to meet us and go for a walk. It was wonderful to meet (the first of many) a woman who had/has handled everything with such good humor and grace, and was so open to answering questions and sharing. Just like when I was pregnant, knowing that so many woman have gone through this successfully before me is a real comfort and source of inspiration.

Around noon on Monday my dad left a message that he had GREAT NEWS and was coming over to talk to me. On my way down to meet him, Dr. Miller called to say that the MRI showed just the one tumor, and didn’t indicate any other issues. A lumpectomy suddenly became a real option for me, and more importantly, I’d gotten my first good news. Again, back to the it’s all so relative theme—I would never have thought a week ago that I would be THRILLED to have a diagnosis of a 2.5 cm malignant tumor, but I never thought I would get breast cancer at 33 (or ever), either.
My dad had taken my ultrasound and mammogram films over to the hospital and bullied/charmed the MRI people into giving him the results (which I believe is illegal on several levels) and took it over the surgeon, who took time out to talk to him about it… finally some good news. That morning he set up the following, based on several recommendations he received from god knows how many sources:
THIS WEEK:
• Weds at 3:00: Dr. Ioana Hinshaw, Oncologist recommended by Offerdahl, Gershten & Miller (St. Joe’s area)
• Thursday at 11:00: Dr. Michael Fenoglio, Surgeon recommended by Gershten and my dermatologist (St. Joe’s)
• Friday at 8:30: Dr. Michael Bateman, Plastic Surgeon recommended by Miller (Rose area)
NEXT WEEK:
• Monday at 8:45: PetScan (Rose area)
• Monday at 2:00: Dr. Gary Snider, Plastic Surgeon recommended by Jewell and Gershten (St. Joe’s)
• Tuesday at 8:30: Dr. Scot Sedlacek, Oncologist recommended by Gershten and Miller (Rose)
• Thursday at 9:00: Dr. Stephanie Miller
FOLLOWING WEEK:
• Tuesday (1/31) afternoon: Possible time for lumpectomy performed by Dr. Miller
No one can say we (he) is not diligent. It is a huge comfort to know that I am doing everything I possible could be doing. Luckily, I was supposed to be out of town Tues night through Sunday for a work trip (which I had actually considered going to, but then canceled on Friday—good thing!) so my schedule was pretty clear. Plus, I am amazingly fortunate that my work is extremely flexible—with the hours, location, and projects on which I work, and my clients and project managers are great, and very understanding (although I haven’t told them all yet, I know they will be).

TMI (THAT’S A FIVE)

2006-01-13T17:55:00.000-07:00

My sister and I have a joke about there being different levels of information. A “1” would be something awesome, like “you won the lottery”. A 2 would be something cool, like “your friend is getting married”, 3 would be some mundane piece of information, a 4 would be something you didn’t want to hear, like “I crashed your car”, and a 5 would be, something icky—for example, every time our dad starts to tell us something about his dating life we’ll put up our hand and say- EEEWW, dad, that’s a 5! I guess the whole cancer diagnosis is something like a 4squared (told you I was an engineer). But in the quest for wanting to KNOW INFORMATION there’s some slippery boundary between good to know and shouldn’t have gone there. Even as analytical as I am, there are just some things I don’t need to know. Survival statistics being way up there on the list-- especially when I don’t yet know what curve I’m on. Better to figure out real options and move on from there. What if games are a waste of time and energy… but they sure do sneak into your mind at 4 in the morning.
As soon as we arrived at the appointment with the surgeon, we were told she was running late and we should come back in 45 minutes. She popped her head in to apologize about 10 minutes before we actually met her, about 2 hours later. This made a difference to me. I wasn’t frustrated that she was delayed, she had fit us in last minute and I was thrilled to be seeing her at all—I appreciated that she acknowledged that our time was valuable and that the longer we waited, the more stressed we would get. I wish all doctors would recognize that something so small goes such a long way.
“She’s really young” my dad said. Having some personal experience with being a very capable (and young) woman in an old man’s field, I liked her immediately. She came in with literally reams of information. She had an outline that she talked thorough, which both my dad and I liked. She has done this a time or two before, but she was compassionate and sympathetic. She said I would only remember 10% of what she said, and I found myself having to remind myself to focus at points. She talked in a foreign language in which I have since become fluent—ER/PR, Hep2Nu, adjuctive therapy, invasive carcinoma, type III tumor—my dad’s favorite new word was “cosmesis”—which I’m not sure, but I think meant type of boob job. She talked with us for over an hour and a half. When the nurse poked her head in to say we had to leave to not forgo the MRI appointment, she told us to sit tight and she would call and fix it for us. This woman rocked.
If the day after my diagnosis was spent in a frenzy of waiting followed by cautious optimism (i.e., shock). (I remember telling Jim—I’ll be all better for your birthday (Feb 23rd) when we all go to Mexico.) Friday was the DAY OF (too much?) INFORMATION.
Just a few of the fun things I learned:
- I had to take a bunch of more tests (MRI, PET, more biopsy result, etc. etc.) to see just how bad it really was
- 2.5 cm lump (the magic number seemed to be <2cm)
- Type III (of III with III being bad) invasive tumor
- A mastectomy was a real possibility
- It was likely I was going to need chemotherapy (WHA??!!)
- I had to give up breastfeeding

Out of all of the things I learned, only the part about giving up breastfeeding made me cry. I have already gone over 8 months (which is REALLY good for someone who works and travels a lot) and would likely have stopped soon anyway, but I DIDN’T WANT TO (brave as a tiger, strong as an ox…).
Maybe that’s the only thing I can wrap my mind around?

The MRI, was, like all of the diagnostic procedures (with the exception of the mammogram) very technically interesting. It was LOUD (they give you ear plugs and it sounds like its breaking), and at some point inject a mineral into an IV to get a better picture of what’s going on. Amazing, really. I’m not claustrophobic, and it wasn’t uncomfortable (although it’s amazing how your body rebels when you’re told to NOT MOVE—twitch, itch, squirm). Although it probably wasn’t the best idea to be stuck immobile in a tube for 30 minute alone with my racing thoughts (…chemo?!).

SLEDGEHAMMER’S ON THE CASE

2006-01-12T23:55:00.000-07:00

How can waiting be worse than knowing? Thurs morning was tough because I had no PLAN. I am an engineer. On one project I am known (affectionately, I hope) as “the hammer” because I get things done. Here I was with this unknown, unfathomly frightening diagnosis and not only did I not know what was next, but I didn’t know what to do to figure out what I could do next… I was waiting for the OBGYN to call me back with potential appointments. She said she’d call back by noon. At 1pm I was about jumping out of my skin (this is when jim invented the term “hawaii time”).
I punted. I called my dad…. Let him loose. Told him to figure it out—what doctors to go to, schedule the appointments, take care of the logistics.
I’ve got nothing on my dad in terms of getting things done (maybe he should be called “the sledgehammer?”). When I asked him to help me his voice completely changed. Out with the dejection. In with the purpose. “I’m on the case,” he assured me.
We both felt better.

About 15 minutes later the OBGYN called. (I conferenced in my dad to the phone call—so glad to have someone else listening for me). She had set up a meeting the next day at 11:45 with a surgeon and an MRI at 3pm. We had a plan. I need to get a 2006 daytimer.

IN THE DARK

2006-01-12T03:30:00.000-07:00

The night I found out (Wed Jan 11) was a long one. Jim, although not a good sleeper as a rule, has the enviable ability to sleep in difficult situations. When we were in Bolivia on a bus on less-than-single-lane road up a cliff from which I was fairly sure we were going to plummet to our deaths at any moment (and I’m not the one afraid of heights) he kept dozing off. When I was in the hospital and induced to give birth to Liam, he could hardly keep his eyes open. And now, this of all nights, he fell easily into an exhausted sleep. I didn’t begrudge him the ability, I was just envious (and a little in awe).
At 10:30 I took some cough medicine with codine, thinking that would help. About when I got drowsy, Liam woke up. At first I was happy to have the company. I wasn’t that happy 2 hours later when I still couldn’t get him back to sleep. Could he sense it somehow? Doubt it. More likely just a brash reminder that this crazy life we’re in --especially the youngest participants-- aren’t going to stop just because my world got rocked. (I think this is a good thing.)
The lucky thing is, I’ve had a lot of practice with limited sleep as of late, so it wasn’t too hard to go to work on 3 hours of sleep.

BRAVE AS A TIGER, STRONG AS AN OX

2006-01-11T21:20:00.000-07:00

I’ve decided I need a mantra.
Alexander has this wonderful book , "Quick As A Cricket" by Audrey Wood with a bunch of great illustrations and sayings (quick as a cricket, slow as a snail, small as an ant, big as a whale…) Inspired by this book, I’ve decided my mantra is:
“Brave as a Tiger, Strong as an Ox”
It’s best when Alexander says it—he wrinkles up his nose for Tiger, and flexes his arms for Ox.
(I can do this.)

AT LEAST IT’S ME

2006-01-11T20:17:00.000-07:00

One of the best things about this is that it happened to me, and not to my kids or my husband. When Liam was quite sick about a month ago, for awhile they didn’t know what was wrong, and when they finally came up with a diagnosis of RSV (as the Dr. put it, I have really good news for you that would be bad news for other people), given some of the alternative diagnoses, we were thrilled. On oxygen for a week? No problem! Funny how it’s all so, so relative (this is turning out to be a recurring theme). I think I might have felt worse when Liam was sick and I wasn’t sure what was going on than I did (do now?) when I found out about myself.
How do I tell my dad and my mom? My mom’s not even here (she was visiting her mom in Ohio) They will feel so helpless. Being a parent makes me understand how hard it will be for them. (side thought: thank god I have boys) Maybe worse than for me. And even worse for jim, my sweet jim. It’s all we can do to balance the tightrope of both working and the 2 little kids. When one of them gets sick it’s mayhem—what will this do to our finely tuned 70 plates-in-the-air juggling routine? Maybe we’ll just put the plates down for awhile.

So I told them. They were shocked, like me, but took my lead and were upbeat. My dad, who, like many of us, needs to DO something, came over with a highly recommended book for me that he went right out and purchased. It’s been very good to have.

YOU’RE JOKING, RIGHT?

2006-01-11T16:15:00.000-07:00

I didn’t get a call at work on wed—left a message at the dr. office, but hadn’t heard anything by the time I rode my bike home in the evening. Ah, the joys of multiple phone numbers (was there a small voice in my head that said “give yourself this last normal afternoon?”) There was a message at home. The perky dr. again saying “Call me about your results. I’m in a meeting but they will get me out.” That is not a message you really want to get. I called the office, and they paged her—she’ll get back to you in 20 minutes, I was told.

Kids wait for no woman—so I was off to pick them up at daycare, cell phone in hand. It’s a good thing my Dr. is on what jim calls “Hawaii time” (never quite within the prescribed timeframe, at least in this timezone) because I was home and (somewhat) settled by the time she called back. Can you imagine if I had been at daycare? I have trouble rounding them up on the best days. I can’t really explain how those 45 minutes might have been worse than what came after, but maybe they were.

When she told me I had cancer, I thought maybe she was kidding. (I think maybe I still do?) Honestly I don’t really remember much about the conversation, other than she was really nice (what’s she supposed to be, mean? But she could’ve been a lot less compassionate…) Wow do I hate that word. It’s just so scary. I probably do things every day that are statistically as dangerous as what I’m facing now—but they just don’t have the stigma. I ride my bike to work in the city, for one thing—I’ve always said it’s just a matter of time before I get hit (jim says I shouldn’t ride to work anymore). I was doing ok in rationale engineer mode (what does this mean? What’s the next step?) until I realized that Liam was breastfeeding from the breast with el lumpo. “Will it hurt him?!” (it won’t) That was the closest I came to freaking out, I guess.

Jim came home when I was on the phone. He gave me a hug and I was breathing so hard I almost hyperventilated. It was like I was outside of myself saying “hey girl, just calm down, deep slow breaths” and I started to slow my breathing, I felt my husband’s arms around me, saw my kids making a racquet in the other room. This will be alright. I’m going to be ok. I have to be.

BOOB VISES (VICES?), BORINGS & MORE…

2006-01-09T16:08:00.000-07:00

My perky OBGYN (I was surprised it was she and not a nurse) examined me and said, hey- better go in for an ultrasound. 99 out of 100 no problem, but you should check. I went in for an appointment the next morning, delaying our New Year’s trip to the mountains. I was the youngest one in there by about 20 years. From the ultrasound to a mammogram (which I must note that mom was not kidding with the “boob in a vise” description).

DOMESTIC ENGINEER, EXTRODINARE
I must digress here and tell a funny story—during my mammogram, the nice technician asked me “what does your husband do?” I figured she assumed I didn’t work because she knew I have 2 small children. For some reason, the morning experiences and unease made it pretty important to me to make clear that I do, indeed, work. So, in what I thought was a very subtle way, said “my husband jokes with me that he’s the engineer because he got an undergrad degree in engineering, but I’m the REAL engineer.”
“Oh,” she smiled sweetly, “the domestic engineer!”
(when I told my husband this story at this point I believe he actually gasped)
“Actually,” I said “I have a PHD in engineering, but I think the domestic engineering part is harder.”

Back to the vise-- Yup, there it is—2ish cm and not filled with fluid. Better get a biopsy. I don’t remember the radiologist looking me in the eye during the 20 seconds she spent with me, but I didn’t really have an indication that it was anything too worrisome.
The lady who makes the appointments (why couldn’t someone else make an appointment?) wasn’t in on Friday, and Monday was the New Year holiday so I had to wait until Tuesday to make an appointment. Note that I am NOT a patient person. But I have to give myself credit that I didn’t dwell on it much once the appointment was set up for the following Monday. I may not be patient, but I am an engineer after all, and what logic is there is worrying about something that 1) you don’t know to be true 2) is statistically unlikely to happen?

Some drama with which parent got to accompany me to the procedure. How lucky am I that people are fighting to take me to medical appointments?
I found the biopsy technically interesting—something on par to a soil boring in my world. The use the ultrasound to guide the needle and then shoot out a little scooper to take ~5 samples. It didn’t hurt. I’m not afraid of needles, which I think is going to be a really good thing. Still didn’t worry much. What was the point?

EL LUMPO, AN INTRODUCTION

2006-01-01T15:17:00.000-07:00

Sometime at the end of November, maybe early December I found a lump in my breast. I remember where I was. In my closet, changing clothes. I was not looking for it. This shames me to say. I’m not stupid. I go to the OBGYN every year (mostly just to get a refill on birth control pill prescription—that’s a good racket they’ve got). And I just had Liam in May, and a checkup (complete with exam) in July—so the nurse would have caught something? Right? (How could she have missed it? How could I have missed it?) and to top it all off I am (about to be was) breastfeeding. For any of you who have done it know, your boobs are not your own during this time—they become strange enlarged objects that tingle at weird times and are at the complete mercy of this little creature who is entirely dependant on them for their nourishment. They hurt randomly and are unpredictable sizes, and often, full of lumps. But none the less, I told Jim because then I knew I would have to follow up… which in hindsight, seems like somehow I knew, right from the beginning, because I am NOT a dr. person (unlike my dad). You pretty much have to drive me kicking and screaming. But I called a week later when it hadn’t gone away.

The nurse, (like I thought and my friends thought) said it was likely a breastfeeding thing—to try the standard pumping, massaging etc. etc. I remember standing at the counter with the pump and a hot washcloth trying to make it go away. If only it were that easy. Then life took over. Liam got really sick and then the holidays. But still el lumpo persisted. I called and made a dr. appointment for after christmas.