MGMT, not just a great band


Today is the day for Evan to begin chemotherapy.  He will be taking a pill known as temodar for five days of a 28 day schedule.  He gets blood drawn twice during this cycle and if everything looks good he will be all cleared to continue with temodar.  This will be a year long process.  He was able to get a patch to help with his nausea to ensure he is able to hold down his chemo.  

The neuro oncologist prescribed dexamethasone in an additional effort to control vomiting and to help with his energy.  This seemed to be beneficial.  Yesterday Evan had an appointment but afterward we went to the store together, cooked together and he helped clean up.  I know this seems mundane, but in our reality–or anyone with cancer–this is a big deal.  I think everyone is wound up to see how he will respond to chemo.  

One thing I discovered to ask about during my research was the MGMT gene.  Apparently this gene helps tumors respond more positively to chemo, but this gene was not found in his glioblastoma.  Nonetheless Evan has the IDH1 gene which generally results in a better prognosis; I will have to look more into that.  Just some things to consider if you were recently diagnosed and need some things to ask about. 

Right now I am on hold with medicaid trying to get some information on what we would need to do to get a second opinion that way if/when Evan decides he wants to look into another hospital I will know what needs to happen…and they don’t cover any expenses out of state so if we get a second opinion it will be out of pocket.  So, please spread the link and if you can, please donate so we can get a second opinion and possibly move to a new hospital.  Don’t get me wrong, Chapel Hill has been great, but Evan is getting the most he can at this point from them.  If he doesn’t respond to temodar we will have to go somewhere else.  I am trying to be proactive and get him to meet with another doctor just in case; I don’t want to wait until it is a necessity.


Money money money….money!

Money.  Great if you have it, or so I hear.  I assume if you have money though you have to worry about keeping it and maintaining a certain lifestyle that comes with it.  For my family, and many others, money is a tricky subject.  When Evan first found out he had an unknown mass he had just started a new job and I was teaching.  Wouldn’t you know that the enrollment period for my insurance wasn’t until October and it was May.  BlueCross BlueShield State would not add him to my insurance unless he had recently lost coverage, but he never had any to lose so that was a dead end until October, and Evan was in need of a biopsy as soon as the steroids were out of his system. 

We looked into Medicaid, but I made $200 over the income limit/poverty line…so there was another dead end.  Now, a hospital can’t refuse treatment because you don’t have insurance so we were able to get his biopsy done and even accrued debt for his radiation.  But, Evan applied for disability and medicaid at the same time and we found out he would be “awarded” disability.  The only catch is that he would have to wait six months before he would actually receive disability, but medicaid would go into effect.  To be honest, I didn’t want to question anything.  The point was that he needed insurance.  We couldn’t afford all of his prescriptions after he was first released from the hospital.  We had to borrow money from family, and my co-workers at the time even pulled funds together–their reasoning was for us to get a second opinion (which I will discuss later), but we had to use it toward the $800 tab for one months supply of pills.

Now I have to seriously consider my working situation.  Apparently Evan wouldn’t get medicaid if I was working.  I was working to help cover his medical expenses.  We just received the bill for Evan’s chemotherapy medicine.  He will be taking temodar, should get the approval to start on the 18th, five days a month.  He will be taking two pills each day.  The bill comes out to be a little under four thousand dollars.  This is per month.  How in the hell does anyone afford this?  Evan thankfully has medicaid to cover this expense.  I just don’t understand how these pills that are necessary to save someone’s life can be so unaffordable when amenities like aspirin, or even pain pills with the right doctor or dealer, are easily accessible.  How are people supposed to live?  

If you are in need of financial help look into government assistance; there is no shame.  If you have cancer the American Cancer Society can help; I just found out today we can get one time help with rent and other bills.  Another source of help for my situation is the American Brain Tumor Association.  Reach out and use your resources.  There are fundraiser outlets to utilize as well.  We are using but there are others out there to explore. 

Money is a tricky thing.  You are damned if you have it, damned if you don’t.