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.

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5 thoughts on “Calling in More Support

  1. Dearest Susan, I hear your cry for help and doing something about it. I know of your alternative resources which you access and share. I celebrate a report of ‘stable’. In my view of cancer this is a high mark. You are wise and you are seeking reality and honing resilience. And, my friend, I so get the fatigue…not really tiredness, not just needing to rest…something else. I think for me it is Life energy! And sometimes I wonder if it is just a part of the aging process and making friends with death. No more striving. I do grieve my low energy at times. Onward we go for as long as we hold breath. “Your resolve to tread the path of life is your greatest asset.”. Love, Marcia

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  2. Susan, this is good news. I fully support your decision to go onto Hospice. The nurses (I used to be one) have a wealth of information, and you get all kinds of benefits – equipment, resources, drugs if you want/need them, etc. And good news about the detailed report – that is quite something that some of the lesions have disappeared.
    Best to you, and still happy to come over at some point if you like.
    Kindly,
    Rayna

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    1. Yes, I would like for you to come over perhaps in the next several weeks. Not sure if I still have your phone number. Perhaps you could give me a call when you return from vacation, at 503-449-9879. Thanks.

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