One-of-my-best-friends Roger texted further, and a tetch more seriously, asking if I feel I have intrinsically changed. An interesting question. He said he didn’t think I had, though perhaps I was better, stronger (thanks Rog). I said that I think I am more me (which some might find scary). But as we often hear in that familiar cancer, or any life threatening illness or event, trope, some of the bullshit has dropped away… (and some remains, damn!) Despite that human desire to be different, offer something unexpected, there truly is nothing new under the sun. Like the millions of folks with cancer before me, some clarity has been gained, some chaff has been separated. But intrinsically I remain the same flawed yet optimistic, probably to a fault, me.
“The surgery went well. We’ll have the pathology results in 2 weeks.” Appointment made for 2 weeks post op. Spend two weeks avoiding thinking about pathology except when your daughter brings it up regularly. Drive to Boston, have radiation consult, Doc says “well, unfortunately your pathology is not back.” What?!? “Maybe it will be back by the time you meet with Dr. O. this afternoon.” Okay that sounds reasonable.
Visit with Mo as she gets her infusion, “yeah, mine came back just a few minutes before my appt with Dr. O.” Okay, I can deal with that.
Head into appt with Dr. O. “So your pathology isn’t back.” Why??? Dr. O says this is a good sign. Her thought is that they probably found some cancer in the lymph nodes and so are really taking their time with the breast tissue to make sure there’s nothing there. HOLD ON! Good news? Cancer in the lymph nodes is good news?? She goes on to say, well, you know because you are estrogen receptor positive you only have a 2% chance of being clear. No, I didn’t know that. It would have been good to know that (maybe, hard to say actually, probs would have spent a whole lot more time thinking about it during those 2 weeks).
Enter Rabbit Hole. Voice inside head. There you are, going along privately, very privately as you didn’t even know you were doing it, believing you would be different. You (I) would be the one to put IBC in the past. Despite being on the IBC FB page where woman after woman shares her years of treatment, the disease that never goes away, is merely held at bay, where metastases to bone, kidney, brain are the order of the day. Where questions and comments like “What should I expect from brain radiation?” “Has anyone else lost feeling in their feet? Does it come back?” “I am sorry to write that _______’s husband let me know she died this morning” fill the feed. I will be different. This is what we do, how we get by as humans in a completely uncontrollable world. Won’t happen to me, my family, my friends. Not us, the implication being that we are special, more special, luckier than the next guy, gal, family (say or write special enough and it becomes a very strange word).
So while I am chastising myself for all that subconscious blather, Dr. O. says the surgeon will call this week when your results come in. Yeah, no. Apparently the surgeon thought Dr. O had it and vice versa. So, I go in on Friday to have my radiation mapping done (now I am a country of cancer) and ask whether the results are back. OMG, no one called you?!? Nope. Dr. Bellon, my radiation oncologist, who is another star in my book and who shares a love of the north and is, this very week, in Alaska attempting to photograph polar bears at the northern edge of the Brooks Range, then went over the report: one positive lymph node out of 9, a small amount of invasive ductal carcinoma left in the breast tissue, both removed in the surgery which may seem obvious but I needed reminding that it’s gone. No evidence of cancer in the skin (if you will remember that’s a primary way that IBC spreads). All very good news (except that part where all the cancer wasn’t gone). The doctors are VERY pleased with my response to therapy. Yay?
Cancer as Algebra
I was never very fond of algebra because I really wasn’t any good at it. I also had a teacher, Mr. Smith, who repeatedly told me to smile, that I was so much prettier when I smiled. Ugh.
So the thing about algebra was that you would spend all this time trying to wrap your brain around a theorem, finally get it down, kind of, and there would be another fucking one, more complex, waiting on the other side.
IBC is kind of like that. You get assigned to the course you never wanted to take in the first place but it’s mandatory. You are given your syllabus: chemo, mastectomy, radiation. But you really just focus on the thing you have to conquer first. Chemo, what will it be like, can I do it, what if I can’t, what if I fail, what if I throw up during the test?And you get through it, you have summer break, and then you have the course in mastectomy. What will it be like, can I do it, what if I can’t, what if I fail, what if I get an infection, what will no breasts be like, will anybody ever want to be my boyfriend again? And you get through it, you’re off for the Native American 3-day weekend, and radiation is on the other side. What will it be like, can I do it, what if I can’t, what if I fail, what if my skin burns, peels, scars, what if it doesn’t get all the cancer (there are some days when your recalcitrant toddler cells are in their twos when you just want them to go away.)
It’s a sped up version of 9th grade. I don’t know about you but I HATED 9th grade.
Going Flat as a Cause
Anyone who knows me knows that I like a good cause. Back in the days of the Native American Chief crying by the roadside littered with trash I went out with my bag and collected garbage. Organic gardening? I’m in! Standardized testing? Not for my kids! Women’s March? I’m there! Ultimate frisbee? Oh yeah (okay not really a cause but…). Climate March? ACLU? Obama? #MeToo? Check, check, check. (I am presently realizing what a first world privileged white woman list that is…).
And now the the Flat Movement. The stories from women choosing not to have reconstruction are amazing: doctors repeatedly telling them they will regret the decision b/c everyone will stare at them; surgeons, who, having been told that a woman wants to go flat so please leave very flat scars and no extra skin, leave “dog ears” or flaps of skin under the arms that can be used for reconstruction just in case she changes her mind (because we women do that); doctors who insist that the woman have psychological counseling before he will accept the decision to go flat, because really, that’s crazy, right?
I luckily have experienced none of that. Every doc I have had (all female btw) has been supportive of my choice. I for one, having undergone the mastectomy, cannot imagine choosing to have surgery again. I REALLY don’t like surgery, don’t like anesthesia and the idea of being unconscious, don’t like opening up my body in a hospital where all manner of germs live, don’t like pain, pain meds, wooziness, fear of infection, etc. And then there are the implants being recalled, the symptomology of women with implants who end up having autoimmune-like issues and the necessity for ex-planting (more surgery). Luckily for me, and I mean this, my breasts were not a vital part of my sense of self. This is not, however, the case for so many women in this body-centric culture of ours.
So, I get to represent the flat side of life. I get to say no to implants, which because it is easy for me, is an easy cause to support. And, as I admitted kind of sheepishly to my friend Jill yesterday, I like being flat. I always wanted small perky breasts not the pendulous non-descript-sized ones I had (oh how we always want what we don’t have). Well, I certainly have small ones now!
So many women on the Flat and Fabulous FB page talk about their fear of the first time they have to go out in public. How they feel everyone will stare. I say bring it on! This is reality, this is the result of breast cancer. This is me standing up straighter than I ever have, proud of my choice though can you truly be proud when you never considered the alternative? And yes, this is still the me with that little niggling voice saying will anyone ever find me attractive again? Please don’t say that of course someone will. It’s a rhetorical question, and you don’t know that someone will anyway, particularly as I wasn’t having a whole lot of action when I had breasts! Poor poor pitiful me (name that singer).
Moving to Bo-oston soon, gonna be a dental floss tycoon…
So radiation starts next Monday, the 7th. I have signed on to another study where I may, or may not dependent on how the cookies fall, be taking a medication that blocks one of the two ways cancer cells regenerate (radiation blocks the other). It’s called a PARP inhibitor. As with all studies related to IBC, there are very few people enrolled, 15 in the country right now. I will be #16, they would like 200. And they don’t really know the ramifications of said drug. So my biggest worry is that it will effect my heart and lungs which are inevitably somewhat in the way of the radioactive beams. But as the rad. onc. doc says we don’t really figure that damage out for years…
So the decision is don’t do the study and die of returned cancer in 5-10 years (or not, one just doesn’t know), or do the study, live beyond that 5-10 years but maybe have heart and lung scarring that will give me a sucky quality of life (or not, one just doesn’t know). I find out on Friday if I am in the take the drug group or the control group. Anything to advance science!
Robin and Mickey have offered me their wonderful pied a terre on Charles St. in Boston for the duration of my treatment. The generosity of friends and family goes on and on and on. While I will miss being the honored and beloved guest of Mart and Rog in Belmont, I think 6 weeks in their home would be taking advantage of the best of friends hospitality (which they deny). This way I can have THEM for dinner and return a bit of that hospitality, and, wait for it… I get to have my pupper Keep with me!! So, in between naps as I am told radiation can be exhausting, Keep and I will walk the river, the Commons, and Fresh Pond. I will go to museums, drink tea, and watch Netflix. And I will figure out what life (and my business) looks like post-treatment.
Wow, can’t believe I am almost there. So very lucky to have you all accompany me. ❤