Alan’s Army

Yes!  Praise God!

The secondary pathology study of the tumor  shows that both chromosomes are missing!

This mean’s that Alan should better respond to the overall radiation/chemo treatments.

Thanks for your continued support!

Sorry folks, very busy with juggling work and caring for Alan.  I was going to wait until tonight after our Radiation Oncologist visit for an update but I understand some people are very upset and worried due to my “silence.”  I will need to keep it brief as I need to get to work.

Alan is very happy to be home.  He is sleeping well which is an improvement over the last week in the rehab hospital.  He thinks his eyesight might be a little bit better, but its hard to be sure.  He can move around fine physically, he just can’t see, so he needs a guide and needs to go slowly.  So no significant improvement there yet.  We are all adjusting to having a blind Godzilla in the house who needs 24 hour care to prevent him from knocking down walls and killing us all.

During the oppressive heat (101 degrees) on Tuesday we rambled around downtown Philly and saw the surgeon, the radiation oncologist, and the medical oncologist.  We didn’t learn a whole lot except the Surgeon is very happy with where Alan is at and says we should stay away from radiation;  the Radiation Oncologist says Alan needs 6 weeks of radiation then Chemo; and the Medical Oncologist agrees with the Radiation Oncologist.  The Neuro/Oncology summit was to be Tuesday night and they would all discuss Alan’s case with a fourth doctor who is apparently brilliant but kept away from patients due to her demeanor (remind anyone of a TV show?) And then they would inform us of the agreed course of treatment on Wednesday.  Both oncologists are happy to refer us to highly regarded colleagues in Princeton.  Once Amber is out of school on the 20th she will need to bear the burden of daytime caregiver (Although I can work from home when necessary) and I can run Alan to radiation on my lunch hour as it is 4 miles from work to home and about 3 miles from work to the hospital.  So . . . why we visited everyone on Tuesday I’m not sure except the Oncologist did get blood for a baseline on Alan (I’ve got $100 that says the Princeton guy takes blood too.)  Oh yeah, the Surgeon took him off 4 of the 7 prescriptions he was on (I’m glad I only filled them for 10 days) and scoffed at the particular doses of vitamins JFK had prescribed saying “take a multi-vitamin.”

So . . . we have officially gone through stage 1 of scared silly with brain surgery and come out the other side feeling pretty good about things (except his blindness) and have now moved to stage 2 of scared silly with the whole “C” word - Cancer.
 
Yesterday the Oncologist called.  The agreed plan of treatment is pretty much what they had been saying all along.  Alan will have radiation treatments 5 days a week for six weeks starting as soon as possible (oh well, no two weeks vacation to Maine for us this year - although we might take a few days at home just to sleep.)  During that time he will also have a reduced dose (180 mg) of Chemo seven days a week.  The chemo is a pill called Temodar he will simply take at home.  It reportedly has minimal side-affects and they have 80 year old patients using it with no problem (Alan’s particular tumor is very rare and generally only found in people over 70 years old - go figure.)  After radiation he will take an increased dosage for 1 week each month for 6-12 months.

When radiation is done, Alan will go to Philly to see that doctor who doesn’t usually see patients.  A “protocol” for a new chemo drug is opening up in 4-5 weeks.  If Alan meets whatever the criteria is he would go on this protocol instead of the 6-12 months of Temodar.

The other thing we learned on Tuesday is the limitations of Alan’s insurance.  It looks like radiation will be covered.  However, for the medical oncologist they only cover the first $700.  I pretty much suspect we have already burned through that so the monthly visits for checkups and bloodwork will be out-of-pocket.  The real killer is that chemo is not covered at all and without a prescription plan we will be paying the “cash” price for the Temodar.  Even when buying cheaply on-line from Canada, the 180 mg dose costs over $300 per pill so the chemo for the six weeks of radiation will be over $13,000 alone.  The cost for the potential 13.5 months of chemo is $30-40K out-of-pocket — yikes!  The oncologist’s social-worker and Ginny are both working on applying for assistance programs for Alan.  Since he was an hourly worker and currently has zero income, hopefully the drug company will help out with a reduced cost.  Of course if his eyesight doesn’t improve he would likely become eligible for federal Disability and Medicaid.  But let’s hope that doesn’t come to pass — to permanently lose the ability to read, watch TV and movies, and play Disc Golf would be absolutely devestatingly horrible for Alan.  My prayers are that his eyesight greatly improves even if it means I have to use our life-savings for his treatment.  I trust that God’s will be done and He will provide.

So anyway, I’ve got to get to work and then get home to take Alan to a 2:30 appointment with the Radiation Oncologist whose office hours today are in Jamesburg NJ.  Once we know his radiation schedule I will let everyone know so they can modify visiting times at home.  Alan does greatly appreciate visits as they are a very welcome distraction.  Due to the hard work of friends, the back patio is a very nice place for visiting when it’s not 100+ degrees out.

Many thanks from all of us to everyone that has sent food to the house as well.

Please continue to send notes and jokes via email to my address or Alan at bigs@bcdga.com as they are a wonderful blessing to him as well.

Thanks for your continued support and prayers,

Andrew
BTW - again, my apologies on the long wait for an update.