I had a scan last Thursday. Scan days are always a little crazy. I don’t sleep well the night before. I don’t get breakfast. I have to drink the berry smoothie contrast yuck. I get stuck for a port access for the dye. I get to lie on a hard table with my arms over my head, intermittently holding my breath. Then I get to wait for results. I got exactly what I expected on this one - continued progression of all lesions at about the same rate as while I was on treatment. Which means, yes, that nothing they’ve given me since last August has done diddly squat to even slow this thing down. All those lovely side effects for nothing.
The real insanity of this scan day came at 10:30 a.m. with a call from my oncologist, who had just gotten a call from the reading radiologist. The neck pain that has been getting gradually worse over the last couple of weeks is from the same lesion in the C5 vertebra that was radiated in December. It’s bigger and is now encroaching on the spinal canal and has consumed about 50 percent of the vertebral body. So both of them were worried that I’m going to sneeze and become a quadriplegic and they think something should be done right this very minute. Well, hold on, guys and gals. The scan was done Thursday because that’s the day that worked in my schedule.
We added the cervical spine to the usual chest, abdomen and pelvis because my neck’s been hurting me more. But I was no different Thursday than I was on Wednesday, and we didn’t have to talk to the surgeon RIGHT THIS VERY MINUTE on Wednesday. Ugh. I met with the spine surgeon yesterday and he’s confident that the structural stability of my spine is fine. The tumor is growing, is causing more pain and is threatening my vertebral artery (probably not a huge deal, but you never know). If it continues to grow it could (and probably would) threaten the nerve root exiting at that level and, eventually, my spinal cord. So all are in agreement that something should be done about it. Choices are real surgery and stereotactic radiosurgery. While there is some really amazing stuff going on with actual vertebral body replacement surgery, everyone is in agreement that my life expectancy is not long enough to warrant the huge hit that my quality of life would take with that kind of major surgery and recovery, so radiosurgery it is. I have a treatment-planning CT scheduled for Tuesday in New Haven, and the treatment itself will be the 18th or 19th.
Next, never let it be said that I don’t know my oncologist. Today was the post-scan, figure out what we’re doing visit. First we talked about pain control, because pain is the thing that is most threatening to my quality of life at the moment. He is perfectly comfortable managing my pain until (and if) I need really huge doses of oxycontin or morphine, not likely to be the case with me for quite a long while. For now, I’m to continue the Ibuprofen and start taking 5 mg of oxycodone whenever. If I get to the point where I’m regularly taking 20 mg or more a day, we’ll start oxycontin. I’m cool with that plan and plan to start with bedtime oxycodone, because probably a decent night’s sleep will help me during the day.
Then we got to the heart of the matter - what next for the cancer? He is perfectly in agreement with me that it makes no sense to undertake any challenging treatment at this point. The cisplatin/taxotere was the last shot at trying for a significant response. Now it’s just whatever we can think of to control disease without making me feel awful. He wants to go to Navalbine - 10 minute infusion weekly for three weeks, off one week, then repeat ad infinitum. Even his chemo nurse says this one is easy. Major problem is usually constipation, which, with starting opiates at the same time, I’ll have to be fairly aggressive about preventing.
I have been really good about not asking prognosis questions, but I couldn’t help myself today. He wouldn’t make any predictions. He said that he knows I like to plan ahead a little bit (my daughter was with me and rolled her eyes all the way into the back of her head at that understatement) but that experiences are so varied it’s impossible to give any idea whatsoever. He told me that 25 percent of people admitted to inpatient hospice are discharged! He also said that things tend to go more quickly with people who give up, and I made it clear that there are way too many things on my “I want to be there for…” list for me to ever give up and give in. So we left it at Navalbine and Zometa next Tuesday and we’ll see how it goes.
We also talked about phase I clinical trials. He will look at possibilities at Yale and Memorial Sloan-Kettering, but is pretty strong in his opinion that he would not be in favor of my enrolling in a trial that didn’t offer any real hope of significant benefit for me. He said that he understands my wish to do anything I can to advance the science, but that I’ve done an awful lot already and that it’s time to return our focus to quality of life. That’s ALL it’s about from here on out. Anything that can contribute to that he’s behind 100 percent. Anything that’s likely to detract from that, he’ll fight tooth and nail. My kind of guy.
Link to blog: http://www.nationallungcancerpartnership.org/blog/?p=252