June 15th marked the one year anniversary of my diagnosis, although I always acknowledge it in January. January 2006 was when I first noticed the dry cough, so in my mind, cancer was already there, and for who knows how long.
Rosalie, my clinical trial nurse, called yesterday to say I'm "doing considerably better", based on my CT scan on June 27. I didn't ask her to elaborate—I'll get the report in a few days, when I see a different oncologist (mine is in Italy), hopefully get the okay to fly long distances, and receive chemo. So I don't know if "better" is compared to my low point in May, or my high point in February. Are there fewer tumors, or are they markedly smaller? I'll do labs on Monday, so we'll see where the marker's at.
Still, I informed her that this past cycle wore me down quite a bit, taking two weeks of energy. I wondered if it was going to continue like this, with the rash now extending down to my ankles. She acknowledged that this chemo drug is much stronger than my first-line treatment, lamented my allergy to Taxanes, and thought perhaps my Erlotinib (Tarceva) dosage needed reduction. She would hate to do that, as my response to the current regimen/dose
has been so good. I hoped the scan would be remarkable, as I feel almost as good now as I did while undergoing the first round of chemo, which is to say, during my good week, I feel pretty normal—I can almost forget I'm ill (except that I want to jump out of my skin). Once you've had chemo though, you'll never be "good as new" ever again. You've been polluted.
Anyway, the conversation somehow turned to the story of my journey to diagnosis. Rosalie seemed astonished by it, and said with some amazement that I was doing incredibly well—she didn't add "for having survived a year and a half so far". The discussion always turns to the future, to what we'll do once this stops working. At a certain point, the discussion has to stop, because in my mind at least, there might be something else out by then that might give me more than four or five months. If the tumor in my lung can go away, or if all the tumors can really shrink, then maybe someday, when I really need it, they can be radiated, maybe using GammaKnife or Novalis (new, targeted radiation beams). As witnessed in Leroy Sievers' NPR blog, cancer can return to the same area inspite of radiation. How much radiation you get the first time determines whether you can receive it again (at least as concerns areas like the spine, and bones in general).
My Mom holds out the thought, You might be the Miracle Girl. She knows the course I'm on is not a cure, but You Never Know.
And even though I'm feeling a twinge in my lower back, it's nothing
like the intense back pain I've withstood for so long (years).
At the end of July, I'll have been in treatment for a year. I've always led a frenetic life. I've worked since I was 14,
sometimes 2 or 3 jobs while going to school full-time and doing all the other things maniacs do—exercised, travelled, had a social life. I've tried to change my perspective on life this past year, and I can't quite shake the idea that I'm not doing enough. Even in quiet times life was not this slow. I've spent more time on the couch this year than in my entire life combined. Not out of choice. And I've had to reassess lifestyle ideas that, until now, were sacred to me.
It's an understatement to say Life Will Never Be The Same Again. Cancer changes one's point of reference so much, I find myself wishing I could just have a "normal life". It makes the simplest things special—the bougainvillea hanging out of trees onto the street, a stroll on a fine day, perfectly barbecued ribs, finding your cat is in good health and is negative for disease. I still dream the big dreams. I dream of riding the London Eye, seeing the chateaus of the Loire Valley, riding camels past the Great Pyramids, greeting the sunrise at Angkor Wat, taking my parents on a cruise….I dream of time, I dream of lost innocence, I dream of not waking up in the night screaming and sweating from fear. I dream of a few more years laughing with my husband, nursing his sunburns, dragging him reluctantly across foreign lands. I dream of good times with family and friends, and time to thank them all properly. I dream of and pray for guidance and transformation. Tonight I will dream of having tomorrow.