Thursday, August 24, 2017

Not Ready For Hospice Yet

Before I get to my topic, here is the news of the day. I had an MRI of my left shoulder done yesterday morning to determine if cancer or tendonitis are causing the pain I've been having there for about a year. You may remember that this was the same area where metastasis was thought to be found when I was first diagnosed. An MRI of that shoulder in early 2016 showed this impressive lesion:

But later, after much examination and consultation, it was decided that what was found was probably not cancer. Then, about a year ago, that shoulder started to hurt. A lot. So I wanted to see if it could be treated. If it's tendonitis, I can get a steroid shot for it. But there was a real chance it was cancer, given how far the cancer has spread in my bones. So another MRI was ordered, and I got the results back today. It's good news.

The MRI showed no cancer in the area, and no ligament tears or anything that would require surgery. I can go ahead and get a steroid shot for the pain. I have that appointment on Monday morning. So that's a relief. Literally.

Here is the other news I have to tell you. I've decided that, despite what my heart tells me, I will continue taking Zytiga and prednisone for at least three more weeks, until my next PSA test. There were two deciding factors. First, someone very important wants me to. Someone who has the only deciding vote besides me. I'm not the only one who is affected by this, and I've promised I'll do whatever she wants me to do to stay here for her for as long as possible. She doesn't want me to do chemo, but she does want me to do this. She'll support whatever I decide, but I made her a promise shortly after I was diagnosed. I intend to keep that promise.

The other reason is there are no more treatments I will accept after this one. If I stop taking Zytiga, I will no longer be treating my disease, other than one more Lupron shot, which I'll get in September. The last time I saw my oncologist, I asked him about what happens when I decide to stop treatment. He said the day I decide that, I need to set up an account with Hospice right away. If I had decided not to take my pills this morning, I would have had to make that call today. I'm not ready to call Hospice.

Hospice does not necessarily mean you're on your death bed. That's the mental image we get, but hospice is much more than that. Merriam-Webster defines hospice as "a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care; also :  a facility that provides such a program."

That's what I will need. I'm terminally ill, I want to stay at home, and I want my quality of life maintained for as long as possible. That's what hospice will give me when I need it.

There's a difference between palliative care and hospice care. I've been in palliative care from the beginning of this. At no point was a cure expected or offered. Each medical treatment was merely a delaying tactic. But my disease was being treated. Not in a curative way, but it's been treated nonetheless.

Hospice care focuses on comfort, pain management, and emotional support. They stop treating your disease, and just try to keep you comfortable. It can be done at home, and I very much hope to stay in my home right till the end. But for now, I still have no symptoms. No pain at all except for my stupid left shoulder.

So why do I need an account with Hospice? I assume it's because it takes time for them to line up the proper care for you, and in my case, things could happen very quickly once I stop treatment. So I need to set things up ahead of time so it's there when I need it. But that's a hard call to make when you still feel fine.

If my PSA goes down in September, I'll keep taking those accursed Zytiga pills until they stop working. I expect that if it works at all, it won't work for long. A few months is all. At that point, I'll have to call Hospice. If my PSA rises again in three weeks, it will be time to make that call then. But not today. I'm not ready for Hospice yet. But I will have to be ready soon. #waroncancer #bearingwitness

No comments:

Post a Comment