Posted by: julia
on Jan 01, 2016
Here we are again: 2015 is over, and a new year is beginning. As always, I’m stealing some time away during our family vacation at Stinson Beach to write up these reflections on the year that has passed. It’s been a mixed bag of a year, that’s for sure. Some was pleasurable, wonderful, beautiful, exciting and fun; some was the exact opposite. The first two thirds of the year were a mostly enjoyable blend of the usual hurly burly of personal projects, parenting and travel; the last third or so of the year got clobbered and overshadowed by big personal life drama when I was diagnosed with breast cancer in mid-September, right after coming back from Burning Man.
But let me back up and do the month-by-month review and put this in vaguely chronological order, for posterity’s sake. Again, I didn’t journal as much as I would have liked in 2015, but I do have my colorful quilt of a calendar and my photo log to remind me what I was doing so I’ll try to reconstruct as best I can.
January was as always reasonably quiet. We helped Eli finish up the high school application process. We saw the Wood Brothers in concert. We worked on decluttering our house some. I went to a tiny new little Comic-con in Petaluma (“Lumacon”) with my buddy Heather and sold a bunch of books. We had a fun and memorable weekend in honor of my birthday in Glen Ellen drinking wine and eating delicious food with Mark and Angelo. My cousin Lauren and I had a memorable weekend with our grandma going thrift store shopping for a new armchair for her new place here in San Rafael (she moved out here from Florida at the end of 2014). I spent hours and hours dealing with the insurance company and the tree removal guys and the carpenter dudes who were rebuilding our crushed fence.
on Dec 15, 2015
Even though I’m feeling physically better and better now that I’m a month+ out from surgery and my stitches have been removed, and despite the “good” news from various pathology reports and tests, I have to admit I’ve been feeling worse emotionally over this last couple weeks (and no, this doesn’t have anything to do with holiday “bah humbuggery”). Every time I stop moving and ask myself “how am I feeling right now?”, the answer is usually some combo of sad and scared, seasoned with what I’m grandly referring to as “existential angst”.
Why so blue? I think that is in large part due to a situational clarification (and an accompanying identity shift) that has finally started to come into focus for me: I really don’t “just” have breast cancer. What I have is a secondary “solid tumor” cancer which is a result of the radiation treatments from my go-round with Hodgkin’s Disease nearly 24 years ago. The treatment protocols are similar, but the overall long-term prognosis and mortality expectations are not necessarily the same for me as they would be for a person for whom breast cancer is their first cancer. How do I know that? Well, I’ve started doing internet research (yes, that means falling down that potentially terrifying rabbit hole that everyone warns you about, but I’m ready for a little more information now). I’ve Googled things like “Hodgkin’s Lymphoma long-term survival rates” and “breast cancer after Hodgkin’s treatments”. I’ve read through a bunch of articles from the NIH PubMed archives and hopped from one alarming reference to another, while discovering that the medical establishment now knows a fair amount about the long-term effects and risks of extended radiation treatments. I never really did any of this research after my Hodgkin’s treatments were over (admittedly, the internet was not as easy to shake information out of back then in the early 1990s, but I was also pretty committed to denial and ignorance as an emotional survival strategy until recently). So many years went by, and I was so generally healthy, that I lost both the sense that I was living on borrowed time and the urge to be eternally vigilant. My oncologist would occasionally mention certain kinds of ongoing risks during my yearly checkups, but mostly I heard these as justifications for why we needed to start/stop certain kinds of tests and screenings rather than as ominous reminders that I was heading into the most likely time period for a secondary cancer to show up (which, for the record, is 20+ years after the initial treatment—and I just celebrated 23 years of remission this past January). Even last year when I was called back into the Breast Health Center after my yearly (clear) mammogram to talk about how high risk I was, the previous Hodgkin’s treatment wasn’t really emphasized as a red-alert risk...it was just one of many factors we talked about in general before they pushed me to get tested for the hereditary BRCA genes. (Also for the record: I’ve now been tested twice for hereditary cancer risks, and both times my tests came back clear. So heredity is not a factor for me.)
All this is a long way of emphasizing that I’m just now finally realizing that there’s a bigger picture developing here, a story arc if you will—one that started but did not end with my first cancer treatments, but rather stretches over several decades and incidences (and certainly has the potential to continue stretching over additional decades and incidences). This bigger-picture/longer story arc realization is triggering a lot of identity work—not just the already familiar shift from “healthy person” to “person with cancer” to (hopefully) “cancer survivor”, but something more complex and ominous in which Our Heroine finally realizes that she is more of a special snowflake than she thought she was, and possibly in greater danger. There really aren’t that many people diagnosed every year with Hodgkin’s Lymphoma (the number for 2015 was something like 9000 new cases), and we haven’t been able to successfully treat it for very long (my Grandma died of it back in the early 1970s, right after I was born). But there is now this generation of young women, of which I am one, who were treated successfully for Hodgkin’s Lymphoma in their teens and 20s, who are now living long enough that we are getting some data about long-term survival rates and additional complications down the road as a result of earlier treatments. Additional complications like secondary cancers. Of which the most common one (in women) is breast cancer. So apparently, breast cancer after Hodgkin’s Lymphoma is totally a thing, and now it’s my thing. Whether I expected it or not, whether I wanted it or not, and no matter how I might wish it otherwise, I’m now in the process of resigning myself to this (and the increased vigilance that comes along with it) being a permanent part of my identity.
on Dec 08, 2015
It was a crazy week last week so I didn’t post about this as promptly as I wanted, but better late than never.
I had two follow up doctor appointments last week, one on Monday with Janet the plastic surgery nurse and one on Friday with my surgeon (Dr. Ewing, the mighty team leader). Janet took a look at all my incisions and pronounced me “good” and said everything appeared to be healing up well. She told me I could lift a little more (10-15 lbs instead of 5-10, which means now I can finally lift my handpan, though I should still be cautious) and reach a little farther over my head (120 degrees instead of 90) and cut down or cut out the ibuprofen any time I wanted. I am still supposed to avoid any kind of strenuous activity or exercise that would get my pulse rate up too high (“have Catholic sex”, she said, which I took to mean let someone else do all the work) for another few weeks. I will go back next week and get the remaining stitches out, and by New Year’s (six weeks out) I should be officially finished with this recovery period. So that’s all good news.
The follow up with Dr. Ewing also went well, but as seems like the tradition now with these appointments, it also gave me some new information to think about. Dr. Ewing went over the results of my pathology report with me (there wasn’t really that much to say other than “all clear and yes, the tumor still tests as estrogen/progesterone positive”) and we talked about the recovery issues some more. She said I could stop the antibiotics (yay) and gave me a referral for physical therapy to deal with the “cording” (i.e. scar tissue) that I was feeling in my armpit, though she also said that the cording would eventually resolve on its own. She told me not to worry too much about lymphedema now, since if it was going to show up at all (which she said was only a 2% chance...I didn’t realize it was that low) it wouldn’t be for another two years. I didn’t realize there was such a lag time there either...I thought it was something that would show up during recovery but apparently I was wrong on that one too. But I’m happy to put this worry to rest. I didn’t get lymphedema last time I had lymph nodes removed and with only two nodes removed this time I’m feeling optimistic I won’t this time either.