ME! POST HAIR CUT!
A friend sent me an email a few days ago asking this: “I can only imagine the mixture personal turmoil and sort of detached scientific interest you are going through. Sometimes you want to know it all, other times you feel like you know too much.” Meg,you are so right-and yet my reactions have surprised myself as well.
The main “emotion”, if you can call it that, that I have had is tiredness. I suspect some of that is due to the cancer, some due to processing, some due to sensory overload. My emotions aside from that have been pretty steady. You would think (those of you who know me well) that I would have delved into the whys and wherefores and statistics and odds and all of that. I haven’t. Because I don’t care about statistics-they don’t apply to me.Whether the odds are 85% of survival at 5 years or 50% survival at 5 years- I am in that survival group. There was never any doubt in my mind about that. I am only 57! I am too much to do! I have a job that I love…a family…an almost 2 year old that I am partially responsible for…a husband with Lyme disease…primary financial supporter of our family….and too many friends who need me. Wendy-I want to be there when you get your doctorate! Karen-we’ve missed too many years! Jack and Keith I want to see and get to know my grandchildren-and see you both happy in life and work! Mackenzie, I want to see you grow up!
I am a caretaker-not a caretakee. I am anxious and impatient to get back to that role.
(the naming of each "breast" is below-but Lucy is left one, Rosalita the right)
The pathology “facts”, the ones that influence the treatment protocol have been fascinating. Cancer treatment, breast cancer treatment, in particular, is fascinating. There are 5 or more “markers” that give oncologists an insight into how to treat (and how successful treatment might be)-2 are hormone markers, progesterone and estrogen. The “good” news about my cancers is that they are receptor positive. The Lucy was estrogen positive, the Rosalita was both estrogen and progesterone positive. That means that the tumors were “feeding” off of these hormones. One area of curiosity for me is: where do those hormones originate? I am post-menopausal, so presumably my levels are pretty low. But I am still female, so there must be some in my system. So, I will be on aromatase inhibitors (the most recent iteration of tamoxifen) which suppress these hormones for 5 years.
I am scared of the chemotherapy-I anticipate losing my hair,hence the haircut this weekend. But its possible it would just get thin or patchy. Still, I’d rather it were short. I am already a little tired and overwhelmed-I will be so glad to get the chemo done. The first 8 weeks will be the heavy duty stuff-after that I’ll be on taxol for 12 weeks-by all accounts it comes with few or no side effects. (more on chemo below)
I make weird strange observations from time to time-I noticed a few months ago that my body odor had changed for the worse…was it the cancer? Maybe. I am losing weight, which is a good thing, but I would definitely not advise it as a weight control method-one of my “reconstruction”options is to do a DIEP (I don’t remember what the initials stand for) but they take fat from your belly and put it in your boobs-no implants! But it is a time consuming, 3 day stay in the hospital, probably have drains in (ugh! The worst so far!) and longer recovery. While the idea of returning to the world skinnier has some appeal I may opt against. We’ll see.
The more interesting part of this process for me at the moment, mostly because of my job, are the ones related to my work-and coordination of care. When I first went to my breast surgeon’s office I had a nurse navigator-great! Our work really means something in the real world! But as time has gone on, I’ve seen that it is not so great. The navigator is assigned to the office—not the patient. So, I have a coordinator/PA for my plastic surgeon too, and one for my medical oncologist. And undoubtedly one for my radiation oncologist. They all talk to each other regularly, so I know that they have been discussing my care, how I’ve been doing and so on. If I want to see a nutritionist or integrative medicine specialist, that’s on me to find and follow-up. Oh, and I also have a navigator at my health insurance company, Cigna. So much for simplification and ease of access.
I am glad that summer will be here soon-I say this as it has started snowing out. But underneath it all, I am still me. Nothing there has changed. I am a bit baffled. There is a bit of “Why me? Why now?” but I don’t feel sorry for myself. Plenty of other folks have it worse off than me.
When I was 23 my 17 year old brother was shot and killed by 2 dumb kids. I went through agonizing years of “why” and pain and cried everyday for 5 years. And also had a type of PTSD with debilitating anxiety and depression. I sort of feel like those questions are answered. I don’t care what anyone says, things DON’T happen for a reason. Bad things happen, period. Sometimes too many times to the same people. Some people get through most of their lives relatively care and pain free, but not many. And most of us don’t. And most of these bad things that happen are not due to bad decisions, although certainly some are.
As an epidemiologist, one thing I did consider was: did I do something that could’ve caused this? The risk factors for breast cancer are not so clear: stress, heredity, age, gender, hormone or radiation exposure, not having kids….not much there that’s modifiable.
So, I am optimistic-and looking forward. Because there really is no point in doing anything else. What’s past is done and over. The only thing left is the future. So, I am not in any hurry to get there, but definitely looking forward to it.
Update on the "facts", for those of you who are curious:
This process is exhausting-here's the summary of my last 2 months, not in chronological order:
So, I got my first chemotherapy today. The Adriamycin/cytotoxin “cocktail” is the really bad stuff. The first half of the treatment was, in fact, IV anti-nausea meds. But, for those of you who are new to this process, or who haven’t traveled the path before, here’s how my last few months have gone (with forgiveness for getting minor details wrong).
New mass on mammogram in January (routine), referred for biopsy. Biopsy was positive, with lymph involvement. MRI follow-up showed a very small right side mass, as well. Another biopsy, and biopsy of left side lymph node (I am naming names, left one is Lucy, right one is still to be named-talked to one of my friends today who thinks she needs an Italian sounding name-anyone think of an Italian name starting with an R-Rosalita?). Anyway, Lucy was the bad one with lymph involvement.
So, since both breasts are involved-bilateral total mastectomy. On March 3. So far so good. They put “expanders” in, to prep for the reconstructive surgery (should I do a final poll on what my cup size should be after all of this??). So, healing has started-got the drains removed 2 weeks after the mastectomies. Then a surgery to repair some dead tissue, another surgery to put the port in, so they don’t have to stick me every time for blood draws and chemo.
Remember, in the midst of all of this are revisits with breast surgeon, revisits with plastic surgeon, visit and revisit with medical oncologist. New visit in 2 weeks with radiation oncologist.
Had CT of chest and abdomen with contrast and bone scan several weeks ago, too. Bone scan showed something not quite normal, but since I have expanders in (they contain metal) can’t have another MRI, needed a PET scan and an echocardiogram (apparently chemo can result in enlarged heart, so they need baseline-it was normal). PET scan also normal. A huge relief. No metastases that any test can detect.
So far, so good (dealing with insurance is a bit of a hassle, but they have ultimately come around each time). About 24 hours after chemo (tomorrow) I am scheduled for an injection of Neulasta-a drug intended to stimulate bone marrow to produce more white cells and red cells. Cigna denied the Neulasta, since I hadn’t had chemo yet! Well, now that I’ve had it, hopefully they’ll cover it. Nurse said she’d never seen anything like it, but I am costing them a lot of money these days.
So, cancer treatment is not only not for the weak of heart-but also make a lot of room on your calendar. My second “repair” surgery was done at 4 pm-I couldn’t eat after midnight!
But, by far the best thing that has happened this week is that daffodils are in full bloom! They survived the snow on Sunday and are beautiful. It is too bad they won't last longer, but dogwoods are popping, as are magnolias, hyacinths and other spring flowers.
DAFFODILS!