Early in my blog, I referred to this journey using roller coaster metaphors. They are apt because the ups and downs are beyond capricious, trending into cruelty, even. You may remember this post, for instance.
I think my roller coaster just jumped the tracks.
My story begins in crisis. I was dying.
You may remember that I have had trouble with the last inhibitor: Verzenio. I tried several times but my body simply said, nope.
As hubby would explain, if I wasn’t feverish, nauseated, in pain and crying, I was drugged and sleeping. I had lost all quality of life. My GI system, in particular, had lost the sense that it was working at all. Maybe I could choke down 800 calories. Mostly, I was in a sort of agony even worse than my experience with Kadcyla years ago.
It’s puzzling: my bloodwork is a regular component of treatment. It showed only one really bad thing: despite not taking an inhibitor, my hemoglobin remained low. Other measures were not so bad, but this was a bad sign. I have already been diagnosed with bone marrow failure. Cancer has seeped into the marrow now and is doing its evil there. It is our hope that treatment will knock that back.
But meanwhile, as we work our way through attempts and plans, I was getting sicker and sicker.
At first, the bone pain fevers happened in the evening. Soon, it was constant. Even without taking Verzenio, I was nauseated — and not “sick to your stomach” nausea but a sense that my stomach had twisted into a permanent, backed up knot all day. If I tried to eat, it would sit there. Ensure became a constant companion.
What’s worse is this sense of disconnection grew. My body was shutting down and I could feel it.
Hubby wanted to put me in the hospital to hydrate, feed, and treat whatever the cause of the fever and pain was. The pain was much like that bone pain that develops when you get the flu — it happens because the body is trying to ramp up white cell production quickly. And the fevers are a response to something that the body doesn’t like.
It was with the Kadcyla that I experienced an early version, while antigens were ridiculously high. With this round of fun, I’ve had antigens too high to measure for many months. It is my strong belief that the two are related: I think my immune system is trying to take down my unwanted antigens, causing an immune storm.
I had plenty of things to try: anti-nausea drugs, pain killers — support in this health system is great. But when things went from bad to worse, hubby arranged an emergency visit into the oncologist. Hubby was going to demand that someone do something.
We met a new member of the team, a PA who worked with another oncologist. She had help for us, but first she had some sobering understandings. It was dizzying, but I will try my best:
- There is no question that my current situation was dire and consistent with bone marrow invasion.
- What’s more, things are moving more rapidly than before.
- Many of the treatments that we are looking at have only a small chance of working.
- It is time to concentrate on quality of life, regardless of therapy.
So she changed everything.
She explained that they couldn’t put me in the hospital because of the way they need to handle COVID-19. Even if they did, they couldn’t pump nutrition in because of certain health risks.
Instead, she had the life-preserver:
- A transfusion of packed red cells
- Daily steroids
- 24/7 background pain management with a light dose of morphine
Measures like these are called “palliative care.” They are designed to help with pain and with living life.
How quickly I responded! Within a day, my energy, my appetite and my joy in life was back. The PA noted that the thing that a host of studies show that what will keep me here longest are the ability to eat, live and enjoy life. I am truly a new woman again. I am so thankful.
But this is my life moving forward. And for quite a while, I must tell you that hubby and I were grappling a much shorter time frame and what that means. There were many tears and discussions and feelings that are impossible to explain. It was so hard to tell our daughter. I dreaded telling others. But it seemed it was affairs in order time, just in case. I will walk through that emotional toll when I can.
But Wait! There’s More!
Today, even grim thought that was called into question.
They ran my PET scan yesterday. It is exactly what I thought it would be, and cause to celebrate:
- My liver shows lesions increasing in size and number
- My bones show exactly the same as last PET — lots, everywhere. But not more.
- Nothing else new
Most people would not celebrate these findings, but these are findings taken almost without treatment. I’ve had very little opportunity to knock these suckers down. Yet I haven’t succumb to more and worse. What will happen when we get serious with our newest inhibitor?
One point upon which my oncologist disagrees with the PA: she sees BrCA gene positive patients like me respond better to inhibitors, so my “chances” of it working are boosted by those same bad genes that started this awful party.
I have just begun my new inhibitor: Kisqali or Ribociclib. And happily, it is going well. Of course, it is an inhibitor like the others, so it is likely to cause blood count drops, GI issues and all of the usual side effect suspects you’ve seen me complain of before.
We will be watching bloodwork for my hemoglobin, my white count, and all of the liver measures like bilirubins. I expect to have SEs that may require an adjustment of my palliative care.
I am back on track, but Lord, what a ride!