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.

Treatment options

Holly and I went to see my neuro-oncologist to talk about treatment plans. He first showed us the before and after surgery MRI's. The region where the new tumours were growing is now gone. There are still parts of the old tumour remaining. This was not unexpected, but leads to some aggressive treatment. The doctor indicated that there is a clinical trail open for cases like mine, but had to get the details. The other option is PCV chemotherapy. Radiation therapy is not an option because I had  'lifetime dose' 6 years ago.  PCV was the standard treatment before Temodar - the chemo I was on for 19 months. Temodar was deemed just as effective as PCV with a lot less side effects. Taking Temodar now is not an option now because any remaining tumour is probably resistant to it.  PCV is administered for up to 6 months, and the doctor said most patients cannot physically tolerate it for that long and end up with less cycles.

I did ask about the 'do nothing wait-n-see' option. The doctor said that if I do nothing the remaining tumour will probably spawn another tumour in about a year. With PCV now it would be about 5-7 years.

There are a lot of open questions with the clinical trial, we will find out the details next week.

Another thing the doctors advised is that with the injury (from tumour and resection) to my brain that caused the problems on my left side that I need to do all my physical/occupational/speech therapy while completely rested. My brain needs to re-learn how to control my left side. This learning process is not a whole lot different from learning thing like math. You need to be alert and rested to learn something new. A tired brain will simply not absorb the new instructions.

The combination of the PCV and the rehabilitation rest means that I will probably not be going back to work for a while. This is tough to swallow. I enjoy what I do and the people I work with. There are serious financial and career implications to this. I take solace in the fact that the implications of not recovering would be much worse.  At this point I need to put my health first. Gulp.

Cracked Blueberry Pie

Holly and I went to the PT evaluation today. We were not impressed. The people there were not familiar with my proprioception condition and by default gave me the run-of-the-mill PT exam. They found weekness in my left arm and leg, and small balance issues. Other than not knowing where my left arm is I am in great shape, much better than all the other clients in the clinic. They suggested that I come in for a few sesions to address the streangth and balance, and they would 'do some homework' on my missing arm.   We are going to seek a second opinion. 

I would like to thank all my family and friends and neighbors for all the help and support these past weeks. I can't begin to express my gratitude, which leads me to Cracked Blueberry Pie. Our longtime neighbor and friend Rose stopped by last night to drop off a few pies, cherry, pumpkin, blueberry. As she is pulling them out of her Car, I am graciously accepting them with my right hand and stacking them on my left arm. Yes, that left arm my brain is ignoring. Gravity won. Luckily, the pies were packaged well and are still edible, just cracked a little.

surgery II complete, new diagnosis

Surgery was this past Wednesday. They removed about 40 cc of tumor, about the size of a golf ball.  The pathology report indicated the tumor is a grade III Oligodendroglioma.  Next step is to talk to my oncologist for treatment options.

As a consequence of the surgery, I  have a functional deficit in my left arm. it is very difficult to type so i cant explain well. I need to have Physical Therapy.

Update 11/14..pratice my typing. This looks like it hurts, doesn't it?

I am feeling well, mostly tired. The doctor was confident that he got as much as he could without loosing functionality. He was actually pleased to see my left arm move at all - it is a sign he went as far as he could.

The awake brain surgery was not as wierd as you might think. No pain involved. All I could see was the  Anesthesiologist as the doctor asked what I was feeling, which would usually be muscle spasmes. The oddest part was phantom sounds.  I told them it sounded like crickets on crack. Next thing I know it, they say I am done.


As for my left arm, I have lost my  Proprioception. I do not have awareness of it. Recall this was my original symptom http://edslas.blogspot.com/2010/12/proprioception-brain-does-amazing.html.  It is some what better than right after the surgery, so I an hoping that the severity is due brain swelling and will get better over the  coming weeks. for now, I can't hold things in my left hand and the arm is constantly banging into things as I walk around. Its wierd when I get stuck walking through a doorway and look back to see my arm caught in the half-closed door.

Craniotomy II

The doctors at North Western reported that their joint recommendation from the tumor board is surgical resection. Brain surgery.

They explained that the size of my diffuse grade II tumor has grown to the point that it is likely to produce new grade III or IV tumors, and that is probably what has happened. The problem with Cyber knife radio surgery is that a biopsy would not be harvested to confirm the grade advancement. Confirming the grade via a biopsy would open up alternative treatments available in clinical trials.

They went on to say that since the tumour is in a eloquent region the surgery would be 'awake' to minimize any damage. The doctors seemed confident that they could get most of the tumour with little side effects....but no gaurentees.

That said, I went back to see the surgeon who did the first surgery at Rush University. He reviewed my case and had the same opinion. I want this out of my head. Surgery it is.

Its back, again.

Its been Six years after diagnosis. I have not been writing much. I have been feeling great and the MRI's have been stable.

I had an appointment with my neuro-oncologist today and he had some disappointing news. A new spot has showed up on the MRI taking contrast. These spots have come and go over the years, but this one stands out and looks to be trouble. It is in the middle of the diffuse tumor that also looks like it has grown over the past 18 months. The doctors at Rush had indicated the diffuse tumor was growing a couple years back - but it was not obvious. Now it is.

He said I have three options,
- Wait and see. I am in good health and have no symptoms.
- PCV Chemotherapy. Ewwwewah.
- Biopsy/Resection. My doctor is concerned about doing more harm than good here.

One of my sisters reminded me that there is also Cyber Knife the doctors at Rush University suggested. I need to talk to the doctor  on why this option was not suggested.

My doctor is going to present my case to the tumor board this Friday and we go back to discuss options in detail on Monday.

Still feeling great, getting better.

My posts have dropped off dramatically. I have been feeling great and don't think about this aspect of my life much. I have been very busy at work, I got a promotion and have been traveling for work a lot,lot. My boss knows about my condition, but more importantly I don't care. I kinda gave up on my career aspirations when all this came down. Why would anyone invest in a person with a brain tumor? My energy was gone, I thought for good, how could I start a new job?  I didn't stop trying to quell my headaches. I didn't stop tying hard at work, and I didn't stop trying to be a good father and hubby. I didn't stop trying, just dreaming. Now my future is so bright, I gotta wear shades. Well maybe not that bright, so I got me a pair of transitions.

I don't think I ever mentioned that the family got one of those therapy cats. This one has some pretty sharp teeth.

I told you not to touch me!

MRI's got moved from every 3 months to every 4, I asked for 6. Next one is in early April.

Looking forward to spring.

Take care,
Ed