YOU'RE WELCOME FOR THE CANCER

“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

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

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

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

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

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

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

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

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...

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