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The Story So Far

When I signed up for a Live Journal account, I thought it was just to make it easier to keep track of my friends' LiveJournals -- I had no intention of posting myself. But I've been having adventures recently, and it has occurred to me that it would be a Good Thing to keep a record of those adventures, mainly for myself, but also to share it with my friends and family (who touchingly all want to know how I'm doing), so here I am, succumbing to the blogging trend.

To start, here is the short version so far (longer versions of some elements to come later):

The most recent big adventure really started in January, when I had my annual gynecological exam and got the order to get my annual mammogram. Being me, of course, I kind of procrastinated, until at the end of July I finally saw my hernia surgeon at Stanford (another thing I'd been procrastinating since January) to confirm that yes, I had another incisional hernia (on a different part of my liver surgery incision from the one that got fixed Cinco de Mayo Eve 2005) and yes, as I had suspected he would say (since I noticed the new hernia and got it's existence confirmed by my GP in December) it needed to be operated on because otherwise it would only get bigger. So, since the idea of a mammogram after hernia surgery didn't appeal, I finally called up and made a mammogram appointment for 23 Aug. But then it looked like my hernia surgery would be that date, so I called and managed to get the mammogram moved up to 9 Aug (St. Lawrence Eve).

So, had the routine mammogram Wed 9 Aug (at the El Camino Hospital Breast Screening Center), then got called back for more mammogram and ultimately an ultrasound on Wed 16 Aug. I wasn't too worried, I knew most things turned out to be benign cysts and the like. The ECH Breast Screening Center was really terrific, and I didn't have to wait at all for the results of the new scans, the radiologist M.D. herself told me that very visit and spoke with me about the next step, an ultrasound guided biopsy. So that got scheduled for the next week, on Tue the 22nd (the day before my scheduled hernia repair operation, because again the idea of doing it after didn't appeal, even though I would be lying on my back for the procedure). Now I was beginning to get a bit concerned -- this is when I started hitting the reputable web sites, like the Susan G. Komen Breast Cancer Foundation web site, which was very helpful and informative -- but the hernia repair surgery still loomed much larger in my mind. The biopsy didn't really hurt much, and I felt fine afterward. I was told the results should be available by the end of the week.

My hernia repair surgery got rescheduled to Thursday, 24 August, the Feast of St. Bartholomew the Apostle, and I ended up having to stay over night because there wasn't enough time after early afternoon surgery to make sure I was okay from the anesthesia. By the time I was ready to go home Friday, I decided I really didn't want to know the biopsy results just yet, as learning the result was negative wouldn't much affect my mental state (full of hernia surgery recovery) but learning the result was positive for breast cancer could make for a harder weekend, when I really needed to concentrate on the initial hernia recovering regime.

So I called my gynecologist's office on Monday afternoon (28 Aug, Feast of St. Augustine), and spoke not to my gynecologist but to her office partner (who also happens to be her father), who said something to the effect of there were issues of concern, and I should come in to talk about it, either making an appointment for the next day or else just coming in that afternoon. Naturally, I chose to come in right then, because they don't make you come in if it's all clear... and then everything started to happen very fast.

So gynecologist pater tells me that I have breast cancer --infiltrating ductal carcinoma-- a 1.1 cm tumor in the upper right portion of my right breast, and that it is caught very early, prognosis is good, and do I have a surgeon or would we like a recommendation? As it turns out, we do have a "family" surgeon who specializes in oncology, the same one who dealt with my grandmother's breast cancer around 30 years ago (one of his earliest patients -- she lived at least another 15 years and died from completely unrelated causes at 85), so gynecologist pater calls up Dr. E's office and so I make an appointment right then to see Dr. E. the next day.

Dr. E. is great (probably more on that later), and since my primary thoughts were GET IT OUT! GET IT OUT! and that as long as I'm going to be sore from hernia repair surgery, I might as well be sore from lumpectomy surgery, too (esp. since the breast surgery recovery didn't sound, and indeed didn't turn out to be, as much pain and inconvenience and restrictions as the hernia repair recovery). So we agree Dr. E. will try to schedule the surgery the Tuesday or Wednesday of the next week, and if not then then definitely 11 Sept.

Things worked out for the next week, so on Wednesday 6 Sept (Swaziland Independence Day or the feast of St. Bega of Cumbria -- my surgical holidays have fallen quite a ways from Thanksgiving and Ash Wednesday!) I have what Dr. E. has now upgraded to a partial mastectomy (which is really just a big lumpectomy -- they still don't take more than 1/4 of the breast). I go home the same day, my bust wrapped up in ace bandages for the next five days. Next day my parents and I drive 200 miles down to the Central Coast (where my little brother John lives with his wife Gwenn and their three kids, ages 2.5 to 7, and my parents have a condo), with me essentially nesting in a pile of pillows in the back seat, right arm raised, etc.. (Which tells you how much less a problem partial mastectomies are compared to hernia surgery -- no way I would have done that the day after hernia surgery!) We reverse the process Sunday so I can get unwrapped Monday by Dr. E. and hear the results...

Which are that the surgery went great and they're confident they got everything, but they didn't find what they expected (a common, if not universal, theme for my surgeries). Instead of one 1.1. cm tumor, there were three tumors, the largest one 2.0 cm in diameter and the other two 0.7 and 0.1 cm in diameter, all clustered near each other in the upper right quadrant and all removed with good margins around them (though some of the margin on one side was air, since on one side it went very near the skin, but since they removed that chunk of skin, too, it doesn't matter). I had also had a sentinel node biopsy, where they removed the first lymph node that area of the breast went to, plus another 4 lymph nodes, and they found a 1mm tumor in that sentinel lymph node, though the other four were clear.

So, this means that I'm upgraded (downgraded?) from Stage I breast cancer, the earliest caught kind, where nearly everybody survives to 5 years, to Stage II breast cancer, which is still considered early and has a very good prognosis, just not the nearly everybody survives of Stage I -- instead it is somewhere around 80-93%, depending on the details. I'm officially Grade IIb, which isn't as good as Grade IIa, but I don't really know where I fall in the percentages because the studies don't seem to go into details like having three tumors in the same quadrant instead of one big one, etc. (None of my doctors have giving me a specific percentage for me, nor have I asked yet -- this is from the studies and such I've been reading on the reputable web sites and the booklets given to me by my doctors.)

It also means, because of the sentinel lymph node tumor, that I get to do chemotherapy (as well as radiation and hormone therapy already planned) which starts tomorrow (12 Oct 2006 -- actually last Thursday as I'm pre-dating this entry, but let's pretend for now it hasn't started yet ;-). And, yes, I'm going to loose all my hair. In fact, I've lost most of it already -- I had a hair cutting party with friends and family on Sun 8 Oct, which, despite my tears when my braids were actually cut off, was a really positive experience (not least because the hair isn't going to waste -- I'm donating it to Locks of Love). But more about that later...

So, to sum up: I have Stage IIb breast cancer. I'm most likely going to live. All known tumors have been removed, and no new tumors have been found in additional testing. I get to do six usually 3 week cycles of chemotherapy (about 4.5 months), followed by 6.5 weeks of radiation, followed by probably 5 years of hormone therapy (that is, hormone suppressing/interfering therapy, not hormone replacement therapy [HRT] like many women get after menopause). I'm going to lose all my hair, but it will grow back (quite possibly even curly -- and that's what I'm holding out for!). And I'm going to Scotland in November (Thanksgiving week) for my PhD graduation ceremony at the University of Aberdeen.

Anyway, so that's the very short version of where I am. The plan, besides, of course, surviving, is to chronicle what goes on more or less as it goes on, and also fill in some of the adventures left out in the above account. (Since late July I've had at least one, usually two, medical appointments every week, often more than one, with the same day record currently at 3 and the same week record at 6 -- and if it weren't for getting some good stories out of all this...). I hope my writing will often be entertaining to others -- a lot of this stuff really is funny, at least after the initial shock wears off -- but I give no guarantees. As said, it's mainly for me.

Speaking of good stories, chemotherapy Cycle 1 Day 1 had a few, but not to keep you all in too much suspense, I was (eventually) able to tolerate all the chemo drugs and so far this weekend have been doing pretty well (enough to enjoy the visit of little brother John and family to our house and even get out of said house and stuff).

PS As this journal is available to any random stranger to read online, I'm going to try to keep references to people to first names and nicknames, enough for my family and friends to know who I'm talking about, while still keeping a certain amount of privacy for all involved. If you post comments, please do the same -- thanks!

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