Cancer Diva Adventures: Reversal of Fortune

Is this blog all about me?

The placemat pictured here was placed at my place for a gathering of neighborhood BFFs at the ever-party-friendly home of BFF N and her perfect husband J. While it was occasionally swapped with other's placemats, it mostly stayed by me, for a night that evolved into rolling-on-the-floor laughter. Perhaps it has often been "all about me", and being a cancer diva seems to enhance that status.  But I do believe that what I'm dealing with must be one in hundreds, thousands, maybe millions of similar stories, so perhaps i speak for many. 

OK, back to me.

In the last blog episode of my life, several weeks ago, I had reported good PETscan results and was continuing the same chemotherapy regimen that I have "enjoyed" since December 2012.   The two-drug cocktail was working, smashing those annoying little cancer cells to smithereens. I was simultaneously feeling the fear and intensity of truly being a cancer patient forever.  I know, I know, I have deemed myself  "cancerdiva4ever", knowing that there is no cure for the disease that I have and that I will very likely have "it" forever.  But I had not truly envisioned active cancer treatment for all of my life.  Perhaps I was misinformed, or overly optimistic (one BFF called it denial), but I thought this treatment phase would end and I might go several years without needing treatment.

This cancer-worldview apparently was Disney-ish.  I began to realize this in mid-April, when I tuned in to a webinar on Triple Negative Breast Cancer (TNBC--yes, it is a disease, not a TV network) with one of the country's leading experts providing a medical update on TNBC.  At the end of his talk, I asked a question (as I often do, given that it's all about me, and that I like to get things moving in the right direction.) 

WOMAN: Hi, Dr. Expert: What’s the current standard of care, if there is one, for metastatic triple-negative breast cancer, once the patient is in remission?
DR EXPERT, MD:  . .   really good question . . . (Yay, I asked a good question!) In general, women who have metastatic breast cancer that is triple-negative … and who are in remission are likely to remain in remission, only so long as they remain on chemotherapy. There are exceptions. … Most physicians, [myself included], who care for breast cancer have had patients who have gone into a complete remission with triple-negative breast cancer, and have remained so for long periods of time. In fact, I had a patient who is now something like 15 years out from treatment of metastatic triple-negative breast cancer.
Unfortunately, that’s rare, rather than more common. The more common scenario is that a woman will go into remission, and remain in remission on chemotherapy, and then will eventually have progression of her disease on the chemotherapy. When that occurs, for most of those women what we’ll then do is recommend switching over to a different chemotherapy drug . .    but none of these represent a cure for women with advanced disease, and unfortunately represent something that perhaps prolongs survival, on average, by only a few months.

Boo.  I don't like this answer.  Not one bit.

In fact, I was so dismayed that I felt somewhat paralyzed.  While I realize this is general information; he's not my doctor; doesn't know me or my medical history--it is one piece of the puzzle.  It is the context of the diseaseworld I am living in and plan to live in for many, many years.  A life of chemo?? Not at all what I had  in mind. 

I met with Dr. S to try to understand this expert's view.  He talked me down, once again, and we discussed the many options available--including clinical trials/vaccines, and oral chemotherapy, and the hope that I would achieve complete remission and perhaps be able to live without ongoing treatment.  He has a patient who has done just that, for six years.  Six years . .  OK . . .  what about my 19 years?  I've been counting on 19 ever since my lifetime prognosis talk with Dr. S.  (See April 14, 2013 blog post, "But Doc, How Long Do I Have?") 

Dr. S, at that point, ordered more chemo. The drugs were working, he said.  The cancer is approximately 80% gone.  Let's keep going.  OK.

One friend (I forget who) said--what would be wrong with that? Why not live life under the influence of chemotherapy?  Oh, let me count the ways!  It takes a lot of time.  I go to my oncologist's office 1-2 times a week.  While I am fortunate to have tolerated chemo pretty well overall, it is accompanied by: stomach aches, nausea/queasiness, fatigue, infections, low blood counts, additonal shots and occasional blood transfusions to address the low blood counts.  I've kept much of my hair, but it has thinned quite a bit, and frankly looks pretty crappy most of the time.  I can't get it colored or straightened or use much of anything other than baby shampoo.  Now that is a pure Cancer Diva complaint---my hair color and texture!  And yes, the lovely photos above, taken by uber-photographer/ new BFF J3 show my hair at its best--they were taken just a few weeks into my first round of chemo (chemo redux) last December.  That was one of the main motives for the photo-taking session: I wanted pics of me while I and my hair still looked good, as I suspected that wouldn't last, and did/do not know when I might ever look like that again.

Inside my head of thinning hair (ooh--nice transition, CD!), I grappled with the concept of chemotherapy forever, or active treatment forever, of a forever measured in days between treatments, months between scans, a life of medical surprises, mysteries, unknowns.  And as is often the case when one worries about something, the subject of the worry disappears, and a new one pops into its place.

Fast forward to mid-May:  Blood test results now show an elevation in a tumor marker, an indication that there is cancer activity, that my chemo regimen is no longer working.  From ohmyg-d when will this chemo stop, to OMG, this chemo is stopping. 

Cinderella, it is midnight and your dance with this chemo cocktail is over.  Go back to scrubbing the floors.

I was upset, thrown off, unbalanced.  Im trying to turn that into: strong, relentless, fierce.  I will not give up.  In addition to being self-absorbed, I'm a perfectionist.  80% is not enough.  I want it ALL GONE.  
As advised by Dr. S, I am consulting with experts at UNC, Hopkins and Memorial Sloan Kettering.  I need a new plan, a new strategy.  And you know what that means?  ROAD TRIP!! 

 If the glass slipper doesn't search for me, I will find it myself. 

Back on earth,  I hear a review of the memoirs of Roger Ebert--one of the best film critics ever, who passed away in April, after battling thyroid and salivary cancer for over a decade.  Ebert gave high marks to "Reversal of Fortune" (note my title above) :), and I've loved virtually every film with Jeremy Irons in it.  Ebert's memoir is entitled: "Life Itself".  Those words are haunting me.  And then, they turn to music, inside my head of thinning hair: 

 . . . .  life itself, rushing over me  . . . .Life itself, the wind in the black elms  . . .  Life itself, in your heart and in your eyes  . . . . I can't make it without you . . . .

Bruce Springsteen, song #9, from "Working on a Dream (2009)"

 Yours, with open eyes, heart and  mind,

CDiva