A NOTE FROM T

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

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

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

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

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

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

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

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?

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?

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

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)

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

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

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!

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)

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

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

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

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

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?

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…

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

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.