Frustrated

No, I don’t have biopsy results yet. (That would have been the obvious conclusion.)

I go stretches between blogging all the time, now. Either there isn’t much happening, or I don’t have the energy to write. I wouldn’t be writing now, except that A just hugged me, and when I reached to hug her back (I was propped up in bed), I brushed my neck and felt two new tumors.

I’m a fucking tumor tree. I don’t go more than a couple of days without finding one. These are the first that will be visible with my clothes on. (I found one on my inner thigh, yesterday. That’ll be comfortable. [/frustrated sarcasm]) I never used to hate taking showers. Now, not only are they painful (I have to stand on an injured knee), but I have to touch my body. I have to wash these things that are doing their best to overrun me.

I haven't had a PET since February, so I don't know how the whole picture has changed.  (My oncologist at Kaiser was monitoring me with chest X-rays and visual exams of my soft-tissue tumors.)  I don’t have bone fractures. If it’s in my liver, I don’t know it—I’m not yellow. I get queasy when I’m hungry or tired, and I eat less than I used to, but I still do eat healthily. Radiation may have temporarily arrested it in my brain; that never lasts more than a few months. It’s running rampant through my soft tissue. I wonder what that means for my lungs?

I have follow-up PET and MRI scans on the 31st. I don’t know if that’s contingent on my biopsy results or not. (If I don’t have the mutation, I don’t know if they’ll scan me.) They took the tissue a week and a half ago; I was supposed to find out Friday if I have the BRAF mutation necessary to be included in this trial. I love UCSF; the doctor is both brilliant, and wonderful with patients. He spent two hours with us, asking and answering questions. But I really wish I could find out faster. (He was hopeful because of a couple of factors, my age being one of them.)

Coughing and poor sleep steal my energy, but other than that I generally don’t feel physically bad. It’s just that my hope is getting tired. (I take three separate sedatives to sleep through the night. I wake up in pain from my knee; this is even with aggressively taking Aleve. I’m going to have to talk to my doctor and my PT about pain control. I really miss walking. I want to walk without pain again, before my brain blows up.) We borrowed a walker from A’s church, because my hiking stick just wasn’t doing it. It hurts too much to bear weight on that leg.

So I’m exhausted and in pain, and watching tumors grow on me. I have less energy. But I still feel like me inside. I sort of feel faded, like I’ve been washed too many times. There are rare times when I’m rested and coughing less, and the old me comes back. Some of it’s emotional. The doctor at UCSF cautioned me not to drive. (If we get proof that the tumors are stable, or eventually shrinking, that will be lifted.) A and I make the most of our weekends. But I don’t get to go anywhere during the week anymore. If I have a medical appointment, we find someone to take me. I can’t just run to Trader Joe’s for dinner ingredients. The last class at CDSP that I still have friends in graduated Friday, and I couldn’t go be with them. I didn’t try that hard to get a ride, because I knew the day would be too long for me anyway.

I don’t really have enough to do, or enough energy to do it if I did. I’m going to need to work on that. Not sure how, but for my mental health I’ll need to.

Where is God in all this? Shadows I sense in the trees that I walk through. By that I mean with me, but not overwhelming me. Present underneath the surface, bubbling up when I need to see God. A friend prayed for a cure for me, and it was the first time anyone had done that and not freaked me out. We’ve had these conversations. I trust her, and I trust her God. I let myself drink it in. It was right. A and I went to see Talisman last night. I was in tears at the second song, and could not have said why. We had a conversation today at the car wash, where I realized that I’m more connected than I think I am—and talking about faith and grace and what God is and isn’t, is one of the ways I can feel my own rootedness. Writing also takes me there.  (Though even thinking about the in-depth processing I used to do here, fluently, all the time, exhausts me now.)

Here’s the song. The music starts at 2:06. It would have moved me under any circumstances, but I was literally streaming tears. I never used to do that. It’s not uncommon now. I’m closer to... something, than I ever used to be.



I know that God is everywhere. I’ve stopped saying Morning Prayer, except occasionally. (One reason is that I can’t even read it in a whisper anymore, without coughing all the way through. Another: the readings themselves weren’t helping or feeding me.) A friend made Greek Orthodox prayer beads for me. I went to my resources, looking for an alternative to the Jesus prayer traditionally said with those, and found something I’d forgotten about—the prayers for use by the sick, in our Enriching our Worship 2 supplement to the BCP. I can say them honestly; they express things I actually feel. So I could try that for awhile.

One practice will lead to another. I need to trust that I’ll find my way home.