Both ups and downs...

Moving onwards. The good is that I continue to feel stronger and have more energy and have been getting more sleep. While I'm still a lot weaker than "normal" Molly, I'm worlds better than I was even 2-3 weeks ago. At that point it took all the energy I had to roll over in bed or get dressed. This past weekend I was able to spend most of Saturday working with wonderful friends (thanks again so much to you all) making great progress packing up my Corvallis house and do a number of errands and projects and social visits on Sunday. So that's very encouraging.

However the paralysis on the right side of my face continues to worsen. My skin just droops, which makes it difficult to eat, and that eye is unable to blink on its own, which means I have to put eye drops in it every 15 minutes or so round the clock to protect it which is a real drag.  So a) that's not good just on its own and b) the fact that most of the doctors agree it's being caused by something pressing on that cranial or facial nerve in my brain is causing everyone some worry.

Yesterday I saw both my oncologist and radiation oncologist and received the third of 4 Yervoy treatments. We also discussed the results of the scans I had done last week and everything looks good except the brain. There are no new tumors and everything that we had already been keeping an eye on has either remained the same over a period of months or is now shrinking. So there's at least evidence to suggest that my body is responding well to the treatment. That is the good news!

The discouraging news is what's going on in the brain (and due to that, the face). In addition to the one site where they see tumor in the cerebellum there is a new "density" site that they're not entirely sure what it is. However they believe that it appears to be blood, perhaps with a tiny bit of tumor. They're not sure what's causing it but given how far out from surgery I am and the fact that I'm not on any blood thinners they think it's much less likely to be a delayed complication from surgery and much more likely to be caused by the melanoma, which evidently is known to cause bleeding in the brain more than any other type of cancer.

Given all this, the recommendation is 2 weeks of radiation to the entire cerebellum.  If I understood him correctly he was saying that not only does the radiation hopefully zap both the known and yet-to-be seen tumor cells, it can also help stop bleeding and reduce the density of the blood already there. Plus the doctors have seen that radiation given during Ipiluminab treatment seems to have a synergistic effect better than either radiation or Yervoy on its own. So they're hoping to leverage that for my healing.

My oncologist's hope and plan is that this radiation would stop the tumors in my head (and hopefully release the pressure on the nerve so that my facial paralyzation improves) and that after I've completed my last Yervoy dose in 3 weeks they'll be able to just let me rest and recover and heal and have my immune system get back in control of the cancer again. I'm certainly ready to be done with being poked and cut open and zapped for awhile.

I start my first radiation treatment this afternoon. I don't know how debilitating it will be but I hope not too much. I do know it's supposed to make me pretty tired (on top of the Yervoy which also does that) and so I am putting everything off until I am done and hope I can enjoy all my Thanksgiving visitors.

Keep that blue light, healing thoughts and positive thinking coming my way.

Molly

So Alone

Sometime early on in this journey I got a card with a picture of Mother Teresa on the front saying "I know that God trusts me" and inside it said "I only wish he didn't trust me so much!?
      That is exactly how I feel right now. Things have been really rocky since I returned from Denmark. First I had the emergency surgery to remove the brain tumor. I felt that I was coming back from that. I made the decision to sell my house in Portland and move to a bigger apartment at Willamette View. It looked like the tumor might be growing back in the brain so I started treatment with Epilidimide.
      Most people get though the four treatments with some diarrhea. But I developed a less common effect on the pituitary glad. First my thyroid shut down and I did not have enough energy to turn over in bed. I had to cut short my retreat with Phyl and Carolyn at the coast to come back and get treatment. Then the next week I had vomiting and had to come in for two days of fluids and anti-nausea medication. Some time during those two days I suffered a small stroke that effected the right side of my face. My right eye does not blink and I will probably have to wear some sort of protective patch and use artificial tears. I will have to see what the eye doctor says today. Also liquid and food can seep out of my mouth which makes it a challenge will eating or drinking. in company.
     It is very hard not to get terrible discouraged and depressed. I feel so alone right now. I don't want to burden my kids any more than I already do and both of my adoring partners are gone. I heard yesterday that there is a support group for women with stage 4 cancer but it meets at a hospital clear across town and I don't know how I could get there. In order to keep moving forward, I am working on the new apartment and I will see how I might get to the support group as there is just too much negative going on right now and it is so hard to keep going. I know that each moment I have is a gift but appreciating that is harder and harder each day.