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.  

Yes I Have Cancer, No I Am Not Disabled

I've been surprised by the number of people who have asked me why I'm still working fulltime. My co-workers asked me, when I returned to my job following surgery, when I was going to retire. Friends, and some family members, have asked.

I guess many people hear "cancer" and think dire consequences for the person afflicted. Or perhaps they've known people who were incapacitated by their disease, or they've seen a lot of movies where the cancer patient spends all her time in bed or in the hospital.

I wanted to go back to my job four weeks after surgery, but my surgeon wouldn't sign the work release. He said six weeks minimum.

I worked all through chemotherapy, and through radiation therapy. I missed just one and a half days of work due to feeling ill.

The Uncertainty of Cancer

Everyone knows she will die.  I don't know at what age we realize that. What mental capacity is needed to grasp the concept? Most of us, all of us probably, have trouble actually believing there will be a time when we no longer exist in our current state.

We know this intellectually, though. Just as we know the earth is constantly spinning at about 1000 miles per hour, that the sun will always rise in the east, that the Oxford comma is absolutely needed in some sentences - but for the average person, the knowledge of our mortality is safely tucked away in the back of our brains, only pulled out at the death notice of a close friend or family member, or more viciously hauled into the front of our consciousness at a funeral. Visiting a graveyard later reminds us that our bodies will at some point fail us.

For a person with a severe health diagnosis, whether it be a recurring type of  cancer or something else insidious, the specter of death is ever present, perched on a shoulder and pressing down, talons digging in sometimes to keep her aware that time is limited, lifespan is short, there may not be many tomorrows.

And yet - there might be. That's the quandary. Live as if death is sooner rather than later, or keep on the regular timetable and continue with everyday things?