If I'm Dying, Why Don't I Feel Like it?

If the new chemo treatments don't work, Dr T said I probably have less than a year to live. Maybe just 6 months.

That seems unbelievable to me, because most of the time I feel healthy. A few aches and pains, this week I have a dry cough and throat, but I don't feel as if I'm dying. I'm working full time, getting things done around the house, running errands, and just living my life as usual.

"Dying in 6 months" sounds as if I should be limited in my activities, having multiple days where I don't feel well, lethargic, disinterested in life. And that's just not what's happening.

This Chemo is Rougher Than the Last

Last year I went through 4 months of chemo treatments. The last one was on December 31, 2015. I really wanted to end it in 2015. Started the new year with that over - so I thought.

The first chemo regimen treated me kindly. I didn't have the nausea or vomiting that seems to be common with a lot of chemo drugs. I tolerated it all well - had some down days, some side effects that weren't pleasant - but I kept working full time through out that, missing just one and a half days at the very end.

This new chemo drug, trabectedin, is not so nice. I've only had the one infusion so far, but already I can tell it's going to be more trouble.

Today, a New Cancer Drug

I'm back in chemo treatment. This afternoon, I started a 24-hour infusion of trabectedin (Yondelis), which my oncologist Dr T hasn't prescribed before. He's seen it in research trials, but I'm his first patient to try it. I think this is a last-ditch effort to save my life. 

 It's a take-home drug, the IV bag contained in a shoulder tote with a battery operated pump. Tubing connects it to my chest port. I go back tomorrow to have it removed. It was emotionally challenging going back into the treatment room. I had really hoped, had believed, that was all behind me. Left it back in 2015.

Background on the change to this drug: For almost 9 years I've worked in the ER of my local hospital, doing non-medical work. On Wednesday, Sept 14, one of our ER docs checked me out because I'd been having sharp pain lower right abdomen all day. Working in the ER gives me easy access to RNs and medical advice. :-) CT scans showed significant growth in both pelvic and chest tumors since the previous CT on Sept 6.

My oncologist, Dr T, was out in the boonies doing Cycle Oregon that week, which sounds like an amazing adventure, but was in touch with his office sometimes. His medical assistant Mary and Nurse Practitioner Jun spoke with me a couple of times to keep me updated. On Sept 9th Dr T had said he wanted to use the chemo drugs doxorubicin (Adriamycin) and ifosfamide (Ifex). Based on the new scans, I guess, Dr T had changed his mind and said he wanted to try a newer drug, trabectedin, which was approved by the FDA October 2015. It's been used previously in Europe, Russia, and South Korea on soft tissue sarcomas. 

"This Cancer is Going to Kill You"

Circle shows worst lung tumor, next to heart

Or maybe Dr T said, "You will die from this cancer." I don't remember the exact phrasing, but the meaning is the same. This was yesterday, after he'd reviewed the results of my recent lung biopsy and CT scans, which showed multiple lung nodules and two lesions in my abdomen.

He said probably in less than a year without more treatments. Going back into treatment may buy me some more time, but it's not guaranteed. But I have to try.

Radiation first, just five days of it to shrink the lung tumors. This may reduce my pain and help me breathe easier. Then, more chemo. The regimen is going to be harsher this time. He said I probably won't tolerate it as well as the first time. 

Bad News - Maybe

Two weeks ago I wrote about having cancer but not being disabled by it. That I knew my cancer had to be taken serious but wasn't ready to cut back on my life:

"And it makes me wonder - should I go on disability? Am I just fooling myself that the cancer is all behind me and I can just go on with life, tra la la?"

Last week things changed, suddenly. Maybe my luck has run out.