Sorrow - Worries - Fears - and Gratitude

I've been seeing a counselor / therapist for about 3 years, discussing various aspects of my life and how I could make changes etc. Sometimes I felt as if I were just complaining and not getting much accomplished between each session. Since last year's cancer diagnosis, our conversations have changed to how I'm feeling, how I'm coping with stress, how my illness is affecting others, and what I want to do with the remaining time I have.

Yesterday I mentioned to her that some people have said minimizing my troubles isn't good, that I should feel free to wallow in my sorrow and worries. I said I don't feel that I'm minimizing, I just recognize how fortunate I am - in the midst of the unluckiness of being that woman who has this rare cancer. 

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. 

"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?

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.

Halfway Through Chemo Treatments

I did Cycle 3B on Thursday, which means I'm halfway through the six-cycle plan. On Friday the Neulasta delayed injection went off just fine.

Friday evening I began feeling confused and felt clumsy and off balance when walking. I couldn't concentrate on much and ended up watching TV on the sofa all evening, although I'd planned to try studying.

Today is Saturday, and I felt ok during the day. I went out with a friend for a couple of hours for errands and coffee, then I had other errands so I didn't get home until late afternoon. And soon fell asleep while watching TV.

The fatigue comes in waves. Tonight I'm feeling the beginning of the sore throat that will continue for a week or so.

Chemo Day 2

Chemo Day 1 was September 3 - it's now October 4. I'm going to try to catch up. I've been keep my CaringBridge journal updated, so my friends and family will know what's going on, but I've been lax in writing here.

Chemo Day 2, September 10, the port worked, with a bit of effort. The nurses discovered if I stood up like the statue of liberty - holding my right arm up into the air - they could draw enough blood out of it. So chemo went as planned. Drugs infused were Gemzar, which took about an hour, then Taxotere, which was about 90 minutes. Flushed the port and unhooked me from the machine.

This was the second week of the 2-week cycle, so I was also scheduled for a Neulasta (pegfilgrastim) injection. According to the official website, "Neulasta® is a prescription medication that can help reduce your risk of infection during strong chemotherapy. It does this by boosting the number of certain infection-fighting white blood cells called neutrophils, which strengthens your immune system." https://www.neulasta.com/what-is-neulasta/

Chemo Day 1

Yesterday, September 3, 2015, was the first day of chemotherapy. It did not go as planned.

I was apprehensive, but not nervous or afraid. My husband went with me, since it was the first time. We showed up at 8:45 am to check in and were taken back to an exam room within a few minutes.

That's when things started to go badly. After the weight, blood pressure, and temperature checks by the medical assistant, a nurse came in and explained about how he would draw some blood from the  central port implanted in my chest 3 weeks ago. Each time before they start the chemo infusion, they will draw blood and run some tests to see how my body is holding up.

He said it wouldn't hurt, or not much, and he showed me the special IV needle they use. He felt around the port - I'd worn a shirt that was easily pushed aside to show it - and then inserted the needle into the middle. And it didn't hurt. But he wasn't able to draw blood.

He tried a few times, had me lie down flat to see if that made it better. Nope. He had another nurse come in to see if she could make it work. She said the thought the port tubing looked odd - that it was bulging.