Calling in More Support

Tuesday I met with my oncologist who revealed that my recent CT scan shows no change from 6 months ago. Actually, no change from 1 1/2 years ago, when I was first diagnosed. She agreed that I could go another year before the next CT scan, and warned me that kidney cancer is slow growing, something that she always does. In other words, don’t get your hopes up, you are fucking going to die of this thing, and don’t you forget it. Not quite that bad, but that is her essential message. She’s a nice woman and means well. She is limited in her imagination. That happens to some doctors, I’ve found.

Today I decided to enroll in hospice. Hang in there with me. No one, including me, (except maybe my oncologist, come to think of it) thinks that I will be dead in 6 months. However, I need more medical support. Hospice will send a nurse out to my cottage every two weeks, and I can talk about how the cancer is affecting my life, and get access to their extensive experience and resources. Medicare provides this for as long as I want it, given my diagnosis. So even if I live another 5-6 years, I can still be enrolled and not kicked out, as long as I am “not gaming the system”.

Eric really cannot do this for me; we neither know what the hell is going on at this point, or what to do about any of it. And my oncologist can only do surgery, chemo and radiation: the only 3 tools in her tool box. I can’t do any of that, for various reasons, and she agrees with me. So, this is my solution for now.

I am so tired it’s shocking and that hasn’t changed much. This is not the tiredness of being old, or run down. It’s very hard to describe. On some levels, I feel like I’m actually getting better, but the fatigue never shifts. It is crushing me slowly.

When dying is on the table, there is suddenly work to be done. Wills updated, various forms to fill out, powers of attorney and so on. I want to choose a cemetery with Eric, which naturally he doesn’t want to do. I look forward and have no idea how much time I have left. He looks forward and assumes I will be around for at least 5 years. Maybe, but maybe not. So the work is on multiple levels, and seems endless and overwhelming and I am desperate for help.

So, I’m going to try Hospice and see how it goes. They are open to alternative medicine, and support that, work with it all the time. This feels like a huge relief to me, even though it’s also disconcerting, a little scary. Reality check.

Am I still aware of the shimmering grace thing? Yes, I am. Am I grateful every day for small joys? You bet. Do I love all of you? Yes, I do. But I need some help in the medical realm. Even if it’s just for a few months until things even out again.

So, here goes.

PS: Remember “no change” report? I ordered the details from the CT scan, and one whole lesion (out of 5)in my lungs has disappeared. As did the cancer in the lymph nodes 6 months ago. Note to other cancer patients: try to always ask for the detailed reports. This is incredible news, and my doctor didn’t even mention it. I attribute this change in my lungs to the tremendous skill of my Tibetan doctor, Dr. Tenzin. And the Medicine Buddha and Green Tara, and all the prayers coming my way.

Well, okay, this is weird.

Tuesday morning Eric drove me to see my primary care doc at Providence, a woman I adore. I want to know what precipitated my episode of a few weeks ago, causing me to drop into deep weakness and feeling death.  So, blood tests (already back, nothing off) and a urine test (not back yet).  Maybe get a new CT scan early, before August.

As a precaution, I called Providence Hospice last week, and a nurse came out to do the initial intake so that I would have a file there, and would only need to push the “start” button to get that system involved, when or if it becomes necessary.  Still trying to get things in order so that I can save Eric as much as possible, when the time comes.

My primary care doc told us that my oncologist has signed off on me being ready for hospice, last week!  I guess the hospice nurse contacted my oncologist as a follow up.

That is just so weird to me, for all kinds of reasons.  Mostly just to hear that she thinks it is possible.  That word, hospice, attached to my name.  But also because I haven’t seen the oncologist since early in March; how could she certify that I am eligible to be a hospice patient?  I certainly wasn’t then, nor am I now.

Our best guess is that she figures I am going to die soon from this cancer, and can’t really do much if anything to help me.  So, perhaps she sees this as helping me out, something that she can do.  In her world, people are dying all the time, of cancer.  Poor woman.

I wonder if I need to find a new oncologist, one who has the capacity to entertain possibilities of a long, happy life for me.   Know of any in the Providence system?  Let me know.

So, a brush with death, an introduction to hospice, knowing that my oncologist is pretty sure I am going to die soon, and my internal resources are working overtime to take this all in, devise a new plan, and try not to start rushing myself in response.  Breathe.  And rebalance in what I know to be true, not what the docs might say.  Hard to do in that force field, however kindly meant.

Chocolate chip cookies are the preferred route at the moment.  O yeah.

And love, lots and lots of love, oodles of it.