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.

Back from Denmark

Well, I had a fabulous trip to Denmark! What a beautiful old country and Mogens and Grethe showed me a wonderful time. I had time to see their two girls and their families and they had wonderful birthday celebrations for Lene and me. After all the kids went home, Mogens and Grethe took me on a whirlwind tour of their country and found such amazing hotels to stay in (a 16th century farm and a 16th century mansion house right on the square of the oldest town, Rige (700 AD)  in Denmark.)

But after I got home, things came crashing down...my balance is off and now my right arm is hurting worse than the left one did. I am worried that we didn't get all of the tumor with the two operations and it has moved to the right side of C6. I have MRI and PET scans scheduled for the beginning of next week. Keep your fingers crossed that they won't find the worst it can be.

For the first time I am really scared!!!

69th Birthday

Here I am in Denmark celebrating my 69th birthday with 17 of my Danish family ranging in age from 18 months to 75 years. We celebrated with gifts, some hand-made presents, and Danish pastries. Ten years ago no one would have believed I would live 2 years and here I am 10 years later enjoying family, friends, travel, and golf. I am so fortunate to have my wonderful family, friends, and medical team. Thank you all for your love and support. May we spend many more years together.

It is the middle of the summer already!!!

     It is hard for me to believe that it is mid-July already. I have been home since the end of May and each day has been filled. I am working very hard to savor every moment.
     Luckily I am getting stronger each day and no longer needing a nap. I am learning how to use my left hand and arm although it still tingles all the time and periodically I get pain shooting through it. I am hoping that this means that the nerve is healing and regenerating. One annoying thing has developed since the last surgery and I don't know if it is related. But on some nights when I lie down (could be a short time or half the night), my nose completely stuffs up and I cannot breathe or sleep. Sometimes I just have to sit up for a hour or so until I can breathe again. My doctor didn't think it was very serious...but I need my sleep!
     My days have been filled with friends and visiting relatives, great food, bridge (Karla and I even won our division once), golf (I can't drive the par 5's and am not playing well but it us wonderful being with friends and walking the course), meditation (not nearly enough) and long walks on the beach.
     I am so thankful that Dr. Lufkin gave me the summer off from treatment and that I am healthy enough to really enjoy it.

A Surreal Night (Should have been posted April 20. 2013)

So last night was very surreal.

I had got the good new from the oncologist, had a delicious lunch at
Jade with a dear friend from Corvallis. My PT appointment was very
positive as I am gaining strength in my left arm and flexibility in my
neck. She ran me through a lot of new exercises for the next week. My
arm was tired but fine. Joined friends for wine and food to celebrate
my news and then played some good duplicate bridge. Headed to bed
tired, but looking forward to the weekend.

Just after I got settled, my arm and hand began to throb with very
sharp pains in the hand, wrist, arm and neck...which grew to be as bad
as anything I had experience since surgery. It really quite frightened
me. Got out the heavy duty pain killers and took one hoping it would
calm the pain. It really didn't touch do much to lesson the pain so I
got up and read for a while. Took a second pill and wrote my blog
posts. The pain began to abate about 2 am so I went back to bed hoping
to get some sleep.

No luck at all. I felt wired, like I had taken speed. I tried
everything to relax...meditating on my breath, Chen's whole body
relaxing, listening to soothing music. Finally gave up at 5:30 and
watched the sunrise over the Willamette. I really don't think I slept
at all..can't remember if I have ever had a completely sleepless night
like that.

Today should be interesting as I have lots on the schedule and the
pain and tingling is returning...hopefully it won't be as bad as I
really don't want to get back on the pain killers (of course, it is
Saturday so I can't talk to the doc or PT!)

Just going to take it as it comes and hopefully get in a long nap.

Attitude is Everything...almost

Passed another recovery milestone by walking 18 holes of golf and hitting a ball (quite well in most cases) from 125 yards in! The weather was fabulous and what a joy to be out with friends. I felt quite good when I finished. A surprise, since I thought I would be exhausted. Icing on the cake was winning the afternoon bridge game (even though I missed bidding a slam!)