Learning to Accept My Weaknesses

Recently I've had to acknowledge my body and mind are not as good as they used to be, even three months ago. In early August I was on vacation in Maine, walking around a small island, climbing over rocks and downed trees, enjoying life. I didn't know that three weeks later, on September 1, I'd be diagnosed with metastatic cancer - meaning the cancer cells had moved from the original location to elsewhere. For me, it was in my lungs and abdomen. 

Since then I've undergone radiation therapy on a specific lung nodule that was crowding my heart, and have gone back into chemotherapy. 

The new chemo regimen is tougher on me than the one I did last year. It's changed me in ways that I don't like.

Preparing For My Death

Today I had my second trabectedin infusion. It's in the tote bag that I'll carry everywhere until tomorrow afternoon, when the chemo clinic RN will unhook it from my port. I'm not sure what to expect these next few days - the first infusion caused me a lot of weakness and lethargy on Saturday and Sunday. By Monday I felt better, good enough to go to work, but side effects continued for over a week.

I've been working on getting a few things wrapped up, such as writing my will, closing out old accounts that aren't used anymore, and sorting through paperwork. So much paperwork! And more arrives everyday.

Yesterday I had an office visit with my oncologist Dr T. He took notes on what my side effects had been. CT scans will be after the third treatment to see any progress. We discussed what would happen if the trabectedin didn't work - "Would we try the other regimen, the doxorubicin and ifosfamide?" I asked.

He paused, and said, "Maybe. But those drugs have even worse side effects." He wants me to think about how I want to live my last year. Trying to fight this? Or just accepting it and going for palliative treatment only, which would make me feel better but not do anything to slow the cancer progression.

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. 

Happy Anniversary, Cancer

It was a year ago tonight - Friday, July 31, 2015 - that I was told I had cancer. I didn't understand what the doctor was saying - she'd come into my small, curtained recovery stall after the D&C which was just supposed to stop excessive bleeding. I remember she said something like, "We found sarcoma. There was a lot of white stuff." I think I asked what she meant and she probably said "Cancer." She said they were moving up my planned hysterectomy from a month out to a couple of days.

At the same time, I found out later, the surgeon - gynecological oncologist Dr T - was telling my husband the same thing in the waiting room. Dr T told him it was bad, serious.

I stayed in recovery for awhile, then they moved me upstairs to a regular hospital room. I think it was in the women's wing, the labor and delivery section. This was just temporary - I think they were trying to decide when to do surgery. The nurses said I might stay overnight.

In the end they let me go home, with a surgery date of Tuesday, August 4.

Too Little Information, Too Much Information

Since my type of cancer is quite rare, not much information is available to the average person. There's some at the American Cancer Society and the NIH, but otherwise it's mostly medical studies and reports, often written in dense language that's hard to penetrate.

And that info is mostly bad, grim statistics about rarity and survival rates. Very little about the day-to-day of living with this. It's depressing to read. Some of them send me into bouts of despair.

This is not like breast cancer, with all the pink ribbons, pink t-shirts,  and pink parades. Pink support on everything, even yogurt.