Are you worth $187,000.00?  Seems like a crazy way to put a price on life but that is what hospitals and policies do.  My treatment, immunotherapy, is costing $187,000.00.  It is actually worth more than what most hospitals put value on human life.  This newly cleared FDA treatment is expensive and it’s only the beginning.  I still have to get to remission for a stem cell transplant.  Who knows how much that is going to cost.  Yikes.   How much does human life cost?  What would you pay to stay alive?   I know I have never really talked about the cost or expense of this whole cancer thing before but it definitely begs the question.  What would you pay to stay alive?

I am back home again after the 12 day stay in the hospital.  The first few days of immunotherapy really took it’s tool with the cytokine release syndrome.  Extreme fevers with chills, like having 10 flues at one time.  It was brutal.  Home is better but it’s still exhausting.  Every task seems to take hours and I have to sit down in between due to fatigue.  The fanny pack they did give me is standard issue and ugly but hopefully it’s only temporary.  This blimp treatment really bites the big one but if it puts me into remission so we can get on with the transplant then so be it.

Side note at least I showered today.  With the borderline debilitating headaches it’s been exhausting just to do that even,  Simple tasks are very difficult these days.  I want to gain as much stamina as possible for the transplant but at this rate I am going to be in some rough shape.  I would like to get more strength back since it’s all gone but if this state continues, I don’t really see how it’s possible.

Sadly I have to report that on Thursday October 13, 2016, I relapsed.  My ALL was back.  I was admitted into the hospital the same day.  We did catch it a little earlier this go around but it is still serious.  I had two options of treatment going into this mess.  Blinatumomab or Car T Cell treatment, which is a clinical trial.  We are choosing the Blinatumomab.

https://en.wikipedia.org/wiki/Blinatumomab

Long story short I will have a fany pack of therapy which in doctor terms isn’t chemotherapy, it is more of an immunotherapy, for 28 day of continuous drip.  The first nine days of this treatment I will be in the hospital.  Some of the side effects are so severe that I may end up in a coma(worse case scenario) If the nine days go well I will then be released to finish at home.  After 28 days I will get a two week break.  During this two week break they will pull a bone marrow biopsy.  If that biopsy comes back clean I will then immediately be prepped and readied for a bone marrow transplant.  The transplant in this case is the end goal.  However if the blimp does not work we can always go to the Car T cell therapy.  But my hope is that this works.  After the first few days of crying and not handling my shit,  I think I have more of it together.  This sucks and after only two months off chemo to have this come back is like a punch to the dick, if I had a dick.

I will in return take up anyone who would like to offer to come and paint my toe nails up on that offer if anyone wants to offer that.  They would need to bring their own nail polish remover and nail polish.  Just saying, doesn’t mean you can’t have pretty toes.