I now know what you can say to me to rock me back on my heels and render me speechless (temporarily. I eventually had a LOT to say). I saw my Huntsman oncologist yesterday, and the news was not awesome. During my hospital visit last week, doctors tested for just about every wacky, random disease or condition that might have made my breathing get so much more difficult. You remember, the leading suspect was a rebound of lung toxicity from the Everolimus. Well, all the tests are back now, and that’s not it. Dr Akerley says the culprit is almost positively advancing disease. The tumors around my heart and lungs are growing and have grown so much that they are squeezing my lungs and my heart and having an impact on basic function, like breathing. My left lung doesn’t work so well any more, and there’s now metastases in my ribs. I’d been suspicious of this for a couple of months, but no one ever mentioned it. (What?) Now it makes sense. Disease is eroding my ribs, and that’s why they’re cracking when I cough. For nothing else but information, it would have been nice (“Nice” is not the right word) to know this two months ago, not that there’s anything I could have done about it.
Then, he whipped out the “H” word. “Hospice is always a reasonable option,” he said to me, the girl of Defy and LiveFearlessly and RelentlessForwardProgress. Maybe he threw it out there just to say it’s ok to be weary of the fight but I couldn’t even process what he was saying. I was stunned. I remember the shock my friend, Scott McKenzie, described when his doctor offered up hospice to him. You think, “He can’t possibly be talking to me.” Well, he was to Scott. And he was to me. Hospice. End of life care. As an old assignment editor at the tv station used to say, “Waiting around, fixin’ to die.” Did he really think that is me now? Ever? I remain unafraid to die, but not now. I’m not ready. I haven’t finished fighting with all the weapons available to me, and I have too many things to do and places to go. Still, it took me a good twenty minutes to get my shit together enough to say, “No hospice. I’m not ready for that.”
So now, what?
I am still aiming for that interlesional experimental (very experimental) drug delivery trial at Huntsman. They’ll inject the drugs directly into a tumor I have on the outside of my ribs.The hope is that it’ll affect that tumor and go on to affect others. It has worked well, according to my doctor, in the lab, in mice, and in some people. I have to do a drastic step down on the high dose prednisone I’m taking, starting today. I’m back up to 50mgs a day, and I feel slightly better. In a week, I’ll be down to 10 mgs a day, and I have to be able to tolerate that for two weeks before I can be accepted into the new protocol. I think I can do it. I felt pretty good last month on just 10 mgs a day, but the longer it takes to get two full weeks of 10 mgs a day, the more likely it is that I’ll lose my spot in the trial.
This trial is also being run at Johns Hopkins, but they’re not recruiting patients. In a perfect world, this trial will work and Dr Akerley can get me transferred to Johns Hopkins and I’ll live at sea level for at least a few weeks. Dr Rajan isn’t sure that is feasible, but we’re (I’m) going to give it a shot. I’m just not sure I can do a whole winter again at 7,000 feet.We won’t wait long to do a follow up CT scan after the trial starts (if I get in), because as Dr Rajan says, we figure there’ll be no improvement in a month, but we want to make sure the cancer cells aren’t running rampant sooner rather than later.
I couldn’t believe the words coming out of my mouth, but I heard myself ask Dr Akerley about standard chemo. Never say never. He turned grim. He said it wouldn’t work for 90 percent of patients, and of the 10 percent in whom it worked, it would only give them a few months. On top of that, 100 percent of patients will get really sick. I was ready to leave it on the table, but because I have contact with all three Thymic Carcinoma experts in the US, I asked them as well, as I always do. I don’t know if this is annoying to Dr Akerley, but I’m trying to save my own life here. And it’s a good thing I stretched. Dr G, who’s moving to Cornell this week, chimed in to say the combination of Gemzar and Xeloda is well-tolerated (whatever that means) and effective. Dr Rajan says that combination has a 20-40 percent success rate for stabilization or tumor shrinkage in TC patients because for some reason, chemo doesn’t lose its effectiveness in them. On top of that, I haven’t had much chemo since 2001. On top of that, Keytruda, the immunotherapy I was on may/should make the chemo work even better, should it come to that because my immune system is primed. So now, I have two possible lines of treatment, where I had none yesterday. This stuff will make you crazy, but it all builds hope if you look.
Before you ask, I don’t feel good, although I feel better than I did this time last week, when I flew home from Denver and went straight into the hospital. I take Tramadol and 6-10 ibuprofen a day just to get through the day and sleep through the night without pain. I will say that I had become a terrible sleeper, but my drug-assisted sleep is getting me an hour or two MORE sleep a night. Score! I’ve figured out how to ride the Vespa with my small oxygen condenser and a backpack. My average daily heart rate has dropped from 105 to 98 in the last week so I feel better. And thanks to Judi and David, I have pie in my refrigerator.
My beautiful fall plans are in jeopardy again; how often have I said that in the last few years? More often than not. But I have a couple of viable options and a lot of really smart people looking for more. Shelving the “H” word to the back of the bookcase and getting a bigger “D” for the front. Defy. I’ve been doing it so long now, I wouldn’t even know how not to be on the front line. Like my friend, Stu Scott. Every day, I fight.