In my experience, it is never a good thing when the doctor calls.
The last few days have been extremely difficult. All of the uncertainty that I had about putting my life back together has sunk quickly into obsolescence in the face of new data: my tumor markers are back on the rise. The chemo did not do a complete job. There is definitely live cancer growing, as we speak. An already tense and uncertain time has become more scary, but also more focused as I figure out what to do next. Yesterday I spent all day in the hospital, getting blood tests, meeting with the oncologist, waiting for an ultrasound, then for an MRI, all the while furiously chasing down my medical records, spread between the USC cancer center, USC Family Medicine, USC Radiology, Stanford, and UCSF. I have a CT this afternoon, before flying out on the redeye to an emergency appointment at Memorial Sloan Kettering in New York on Thursday. I may or may not be anywhere in particular between then and my appointment in Indianapolis on Monday. Maybe I will be able to make it to a dear friend's wedding this weekend in San Francisco. And maybe not.
What is next is unclear. "Salvage" chemotherapy, "clinical trials," and other such niceties may await. The currently-accepted dogma seems to be that as long as my tumor markers are above normal, I am "no longer a surgical candidate," although the people in Indiana seem to think that maybe that option is not out.
I am packing now, for an undetermined period of time. It is still cold in New York, but maybe by the time I finally leave, it will be warm. But I could be back in LA next week. Should I unplug my refrigerator? Finally move out from my apartment? Find a subletter? Or just leave it? The last option, for now, is the easiest, and therefore wins.
Emotions are unpredictable these days. I find my psyche trying out various reactions, briefly letting myself feel each, expecting that one or many of them will sink in eventually, and others be quietly retired. I find strength in having gotten this far in such good shape. I am outraged at everything that has gone wrong on many levels, and also understand that no system is perfect. I could keep writing, and will, but I've got too much to do today to get ready. OK. Deep breath. Here we go again.
11 comments:
We're still here, I hope you can feel it.
Absolutely still here, and thinking of your constantly.
Me too!!
praying for you and thinking of you in Massachusetts.
Love,
Jen, Kevin and Connor
Dear Josh,
I am with you in spirit. Stay strong and courageous.
Love,
Lynn
Josh,
I send you an email, but I wasn't sure the most effective way to reach you, so I thought I'd post here as well:
I've learned over the past few years that my most effective means of coping is intellectualizing. Not rationalizing (shudder), but intellectualizing - dissecting what I feel, why I feel it, to what extent what I'm feeling matches with the circumstances, and when they don't match, which of the two is "off." I'm sharing this with you because I finally got to the bottom of my reactions to your news from Monday, and after doing so, I felt a lot better. There were two significant revelations that helped extricate me from despair, and I thought I'd share them with you.
The first step entailed me trying to define the fundamental difference between my reactions to this week's news (tumor markers up) and to last week's news (not a surgical candidate). No question this week's news was more "upsetting" but why and how? I decided the fundamental difference was that last week's news was jarring, disorienting, and possibly even disconcerting (for you, who was planning on a surgery date, perhaps "disorienting" can be replaced with "shocking"). This week's news, however, was bad, rather than jarring/disorienting/shocking/disconcerting. Acknowledging it for what it was - tumor markers on the rise is undeniably "bad news" – helped me to see that this is neither the first nor last of either bad or good news. On Monday, I stopped seeing anything past Monday. But the story didn't end on Monday - we've all known for a long time that this is a story that will for years (even if tumor marks are @ 0 for 2 years, there's still going to be the feeling of "waiting" for 3-5 years...and we all knew that). This was bad news. And we haven't had genuinely bad news in a while, so it feels BAD. But there will be more bad news and more good news; this is just another datapoint in a long graph of ups and downs. For a brief moment, when I felt the weight of the bad news, I forgot the graph keeps on going. With this longer view, I suddenly found myself more equipped to accept this single piece of news and look towards the next.
The second realization came as I "broke the bad news" to a few people. The story I told never seemed as dark as the story I was feeling. I told the "bad news" as honestly and as fully as I had witnessed it, but I realized that there were hopeful parts of the story that I was telling, but that I wasn't factoring into how I was feeling. When I listened to the story I told, as a whole, including Dr. Quinn’s insistence that "salvage" therapy was still intended to be curative, I realized my problem: I had been presented with bad news, and instead of looking at it as bad, I had looked at it as bleak. When I tried to listen to the whole story - beginning to end - I realized that it didn't sound as dark as it felt because, quite frankly it wasn't. It was bad, but not bleak. And suddenly I felt sad and concerned, but not in despair.
Each of us is inevitably going to be affected differently by this same piece of bad news – it will mean something different to you than it will to any of the rest of us, and it will mean something different to your mother and father than it will to me or your many other friends. But my change in perspective helped me so much in formulating realistic and constructive reactions to your new circumstances that I wanted to share them in the hope that no one's reaction has to stem from bleak, and that we can all process the bad news as bad, but also as a piece of bad in the context of a long, long story.
Speaking of which, give me a call sometime and let me know about New York and about the last two days of your story. Good news, bad news, just plain "news," or new thoughts and feelings, you know I'd love to hear about it.
Love and hugs,
Rebecca
Thinking of you every day buddy!
Stay strong!
Sending hugs from Germany,
Georg & Kirsten
Dear Josh,
I'm sending you love and I have complete faith in your ability to navigate through this murky terrain. I am visualizing scrubbing the cancer cells away since I find cleaning highly therapeutic.
Love, Megan
Dear Son of My Dear Friends,
I am breathing, too. Thinking of you all. Feeling you all. Furious on your behalf. Wishing I could do something. Wishing the things I might do might do some good.
We are with you,
Courage,
Christian Mounal (France)
Josh,
Thanks for sharing.
Just wanted to let you know we're thinking of you.
Z & G
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