Treatment Decision

We met with the doctor last week and got the details of the clinical trial he talked about. It's a phase I trial for a drug "AG-881". It is too early in the trial to tell if it has any effect on brain tumours...."it might help". The doctor recommended to go with the PCV chemo first, then if that does not work, we can join the trial at that time. Consider it a second option. PCV it is. I am scheduled to start the week after Christmas.

As I mentioned before, going the PCV chemo route has serious implications in my life.  Starting with my rehab, and adding this chemo on top means that I will not be able to return to work before the Short Term Disability/FMLA runs out. I will loose my job and will have to go on Long Term Disability/Federal social security disability. With my job goes the health and dental insurance. It looks like my options in the short term are COBRA or Obamacare/ACA. COBRA is very expensive, I cannot afford it.  The oncology social worker at Northwestern quickly showed us how to apply for ACA and it looked to be about 1/4 of the cost of COBRA with about the same coverage. She also offered to fill out and submit the federal SSD application for us. That Northwestern Medicine outfit is awesome. Things will be tough for a while, but I plan to be back on my feet within a year, find a new job on get on with my life.

Therapy update. I was discharged from PT with home exercise instructions and one follow up visit. I am confident walking around and can't wait to go hiking. I had an evaluation with the Speech Therapist, and they did not recommend any treatment. My Occupational Therapy (OT) is a different story. My right hand is getting better, I can do basic things like grabbing and holding. My therapist is giving me great exercises and methods to deal with my deficiencies. I am happy with the progress here. The proprioception in my left arm is not getting any better. Let me give you some examples. I get startled when I am looking away then catch a glimpse of my hand. It looks as if someone else's arm is reaching from behind me around my body to grab me, but its mine. I have shouted out in the grocery store because of this. While laying in bed with Holly I cannot tell if the arm on my chest is hers or mine. I'll squeeze the hand, if it squeezes back its Holly's (inside joke 😊) I can use my arm and hand, but I do recognize them as part of my body unless I can see them.

Have a Merry Christmas!

Physical and friends therapy

Things are going OK with therapy. For physical, I have mostly been working on balance. Heel to toe walking with me eyes closed, standing on one leg, walking down a hall whilst not watching where I am going, stepping over obstacles,etc. I feel pretty comfortable walking around now. I still take my time on stairs. Going to these appointments a couple times a week is getting old. I don' think my problems here are that serious.

Th speach therapy hit a snag with the insurance. Things the ST wanted to do were not allowed by the insurance for my diagnosis. really? This should be settled soon. 

 

I had the evaluation by the Occupational therapist 'OT' yesterday to work on my arm and hand. This has been getting better, but needs a lot of work. I get startled every day when i see my arm. I can go on all day about the things I have difficulty doing. I have to mentally force my left arm/hand to do things. It's exhausting, especially all this typing.  

I have been trying to exercise my brain too. The dork in me likes to write programs. I have been dabbling in programming languages I am not familiar with. My attention span is ok, but concentration tends to float away.

Oddly, my surgical pain has been flaring up recently. This has been giving me headaches.  

My oncologist is still researching a clinical trial I am eligible for. I have a feeling I will land on the chemo option. This should be decided next week.

    

 Lastly. The insurance plan at work is changing and my current doctor is no longer 'in-network'. Cost went up, coverage goes down. I am worried that I will not be able to afford quality care going forward. The dang insurance company will eventually want cancer patients to go to the minute clinic at Walgreens.  Oh, you want to see a real doctor? that'l be $10,000. I am hoping that the clinical trail will be all expenses paid.