Friday, May 24, 2013

Adventures of a Cancer Diva: Waves

I promised to report on GIRLS BEACH WEEKEND!! before moving on to other posts, and I do keep my word.
It was wonderful, relaxing, fun.  There is nothing better than the company of good friends against the backdrop of the ocean.  We laughed, we dined, we napped, we read, we gardened (well, someone did).  BFF J1, hostess with the mostess (and one of very few friends we have with a beach house!) prepared  delicious salade nicoise with perfectly seared fresh tuna.  We pedicured and dipped our toes in the sand.  We hydrated.  



BFF N, a dedicated and gifted early childhood teacher read Rehoboth restaurant reviews out loud with a voice and cadence that made them sound as though they were written by Lemony Snicket.  

We were missing a few of us and they were dearly missed.  BFF B--the glue that holds us together (yes, SC Chuckie, I'm borrowing that phrase from you!) has been uber-busy, as her Perfect Husband (Ph) D is a cancer patient and has been in chemoland for almost a year.  (They have Playland at the beach, but no Chemoland.)  BFF S --the baby of our group at just barely 5-0 (and I don't mean her height) has been busy helping her Mom, who has been a cancer patient for decades, and is facing the challenge of a new recurrence.  This friggin' cancer thing is everywhere, as are other conditions that can stop you in your tracks.  BFF C has Parksinsons and lives with those challenges valiently every day.  She never misses a beach weekend or any opportunity for a party, never whines or complains (unlike me!), and has insights both hilarious and profound. 
Once when one of our BFFs couldn't make it to a gathering because of strep throat, said BFF (am witholding her initials here, as her strep may have been confidential), she said she felt bad--because I was going, despite having cancer.  I told her not to feel bad . .  if the logic were that whoever has the worst disease should stay home, BFF C and I might never go anywhere! 

Being at the ocean is calming for my soul.  The vastness and continuity help me realize how small my problems are in the scheme of things.  I am just one soul.  This too shall pass. 

As with all weekends, girls beach weekend also passed on.  I went home with a bit of a glow, less cash, more chocolate, and the rythm of the waves in my head.

In short order, some of those waves turned to waves of sadness.

Read my next post:  Reversal of Fortune.

CDiva

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 answerNot 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



Wednesday, May 8, 2013

Cancer Diva Adventures: It's Complicated

I liked that movie, even saw it twice.  Meryl Streep is always fantastic, and had I been her character, I might have gotten back together with Alec Baldwin.  I guess I'm forgiving, and a bit of a romantic . . .

Oh, wait--I'm supposed to be writing about cancer, not movies! Also complicated.

I last posted two weeks ago from the windy city.  I was very happy to come home to DC, sunny days, and azaleas in full bloom.   Chicago was COLD. Coooold. In oh so many ways. OK, moving on from that.

My silence has not at all been for lack of news or thoughts to share--rather, I have too much.  And if I can't make sense of it, how can I say it? Perhaps some clarity will emerge from my keyboard. For several weeks, I have been struggling to absorb new (to me) information about my long-term treatment-- its nature, its length, the unknowns.  In addition to this ongoing theme, I came home to a PET scan, more chemo, and another period on short term disability (STD).  Perhaps this STD is contagious--for me, anyway. 

On April 26, I had a PET scan, as I had completed the originally scheduled six rounds of chemo.  As some readers may recall, my "half-way through" CT scan (less precise than a PET, as I understand it), in February, showed that my four cancer sites had shrunk, by approximately 50%--a blog post noted with"Yaaay!! and "Hallelulah!"  Loyal bloggees may also recall that I chose to consume pancakes (aka "scancakes") on PET scan day
--because what else can one really do between having a test conducted and meeting with one's oncologist to learn the results? I again indulged in pancakes, once in advance in Chicago (I know, forget Chicago), and again on the day of. 
This time, I ordered a smalller stack.  Again they were delicious, and again, I brought half of them home--one and a half pancakes to be exact--one, I ate in my car on the way to work a few days later; the other half I shared with Lulu at home.

The same technician waited on me (no, I'm not confusing him with the pancake server).  Nuclear medicine tech A (NMTA) is very clever.  Back in November, my PET scan was a follow-up to a problematic X-ray of my jaw.  After the scan, feeling confident that this was just a cancer "scare," I asked him if he saw anything, and he replied "I didn't see anything in your jaw."   I guess I was optimistic enough, confident enough, (stupid enough?) that I told perfect husband (Ph) that I would go to see my oncologist, Dr S, alone.  An hour later, after a tearful phone call, Ph joined me at Dr S' office to hear the details of the metastases that was not in my jaw, but was in four other places. 

So, this time, no questions for NMTA, just small talk--and not even so much of that. While I was lying in the PET scan machine, it was very quiet.  Usually the techs talk . . . "Are you OK?" . ."keep very still"  . .  "only 10 more minutes . . ".  I wondered if perhaps he fainted or left me there while he went to get coffee. Afterwards, I asked NMTA why he didn't chitchat, and he replied "oh, that's just for newbies.  You're experienced." Great. I'm a pro at lying in machines that detect cancer.  What a talent.

After pancakes and another fly-by doctor's appointment, Ph and I went to Dr. S's office.  I no longer want to go alone to hear scan results.  And . . drumroll:  the results this time are good overall.  My cancer spots are still there, but they have shrunken, again.  I had to be talked down from this good news.  Before Dr S came in, the nurse whose name is also a wine region (Nc) gave Ph and me copies of the PET scan report. Ph sat and read; I paced, in my hospital gown, reading, underlining, circling, freaking out as I read:  "there is however a small lymph node noted  . .  with increased activity . . the largest and most active lymph node in the left periaortic region . . . slightly larger than the scan of February 2013 . . .continued close follow-up  . . reassess with abdominal CT scan . . ."  My heart was pounding.  When Dr S came in, I said, "so, my cancer has spread to my abdomen, near my aorta??" "No, no.  There is activity in your abdomen, enlarged lymph nodes.  Abdomens have lots of activity.  It could be many things . . . " .  "So, I need to have a biopsy of my abdomen?". "No, no, it's just something to watch.  You've got to keep perspective.  This stuff can be crazymaking."

Tell me about it.

So, more chemo, said Dr. S. We want to get rid of those spots.  We are hoping for complete remission.  We don't know how many. Let's start with scheduling two.  Ok.  I walked back to the very familiar chemo room; said hi to the nurses; picked one of my usual chairs, and started right away.  Why wait?

Ph left to do some work. That's OK, I'm fine. I'm used to this. I don't need company.  After two hours of IVs dripping the same cancer-killing drugs into my veins, I was ready to go home, but had no car or ride. I decided to look for a taxi--flagged one, and got in, simultaneously flipping the lid off of my Starbucks latte, which spilled all over the taxi, my beautiful new J. crew purse, my clothes, my hair, even into my eyes, stinging.  I burst into tears as I apologized to the driver & tried to wipe up the coffee with a napkin.  I'm sure he thought I was crazy. "This stuff is crazymaking." On the short ride home, all I could think about was the sign, apparently in all Chicago cabs: "Cleaning up vomit: $50."

I got home, again happy to not be in Chicago, and gave the annoyed dtiver a huge tip.

So, there's more, much more--expert advice, possible clinical trials, doctors in NC, NY and Seattle, lymphedema status, yoga, meds and vitamins, shopping at J. Crew (many friends are incredulous that I've barely written about shopping!), reading, movies, music, how to approach life when you don't know what it will be like in 6 months, a year, five years.  [I know, I know, none of us do . . . but I will explain . . ]  But I'm tired of writing and you must be tired of reading. 

And I have to pack.  Because before all of that serious stuff, I just may write about . . GIRLS' BEACH WEEKEND!!  Stay tuned.

Yours in crazymaking,

Cdiva