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Wednesday, September 28, 2016

Update on #Cancer: Battle Nears An End

(Again, if you spot typos let me know.)

Sooo...this is where we stood at the time of the previous cancer update: I went back on the Avastin (the chemo that was stopped due to the swelling in my feet and legs as well as the protein in my urine). I had two treatments, on 9/7 and 9/14. At the time I decided, after doing some reading, to take a magnesium supplement to try to limit swelling. Don't think it had any affect other than making me pee even more than I was.

Today I saw my chemo oncologist. The swelling has returned. The tests on my urine show the protein leaking into my urine again. So we're stopping the Avastin.
Meanwhile, I am having increasing difficulties with walking and using my lest hand for...well, anything...I've had a few falls. which were mostly embarrassing. But in the last two days I fell outside, in basically the same spot: near my mailbox. Yesterday I got lucky because I didn't have my phone on hand, but a couple of neighbors eventually came outside and helped me up. But my side is kinda sore and really, really bruised. Today's fall left me bleeding from my knee and elbow, and happened even while using my walker (clearly I haven't mastered the use of this device). My sister-in-law had arrived to take me to the doctor. One of the same neighbors who aided me yesterday happened to come outside again. I called my brother who works close by. He was here quickly. And then the mail carrier arrived as well and helped. "This isn't in your job description," I told him.

In talking with the doctor after the decision to discontinue the Avastin, the only option he could offer to continue trying to treat the tumor was a chemo in pill form, which was actually a standard method of treatment for glioblastoma before they started using Temodar and Avastin (both of which were unsuccessful in my case).

The doctor left me and my sister-in-law alone to talk. We both broke into tears (I'd like to point out that this was the first time in this whole thing that I cried. And that it's happened a couple more times since.)

So I made the decsion to end all further treatment on the tumor. The doctor said there's no way to give me a specific prognosis as to how much time I have. Just basing it on averages of other glioblastoma cases he offered a guess of six months.

Plans were previously made for me to move in with my brother Steve and his family. They have an extra room in their house that is almost like an apartment so I feel I'll be comfortable. They are getting things set up and the hope is the move will take place this weekend. I don't have to move much immediately -- mainly clothing and some things I may need immediately.  The rest of the contents of the house I can take some time sorting (what to keep/donate/trash) as my cousin, who is buying my house as is and will renovate it and eventually move in, is giving me as much time as need.

 I am also slated to speak to someone from hospice care, although at this point I'm functioning well enough (hard to beieve but it's true) that I won't need, say, nurse's visits on a regular basis. I think we'll be talking about equipment I can get (such as a wheelchair?)

(BTW the Duke University clinical trial was a no-go.)

I know this is bad news and a lot to process. But the good news is I still have my right hand for  one-handed typing (minds out of the gutter) and my mind stilll works. So I intend to blog, tweet and complain about your behavior on Facebook for as long as I can.


Dream Studio said...

Joe, this is Philip Tuley. You have my love and my prayers (duas),as do your loved ones.

Anonymous said...

Hi Joe. I lost my mom to brain and lung cancer. She stayed with us and we cherished every day. The one thing I will remember the most of that time was her grace and her strength and how she enjoyed every moment she had left. She amazed me. Your blog showed that same strength and grace may god bless and comfort you. Keep making memories Joe. Diane