Skip to content

Rolling the hard six

The day before I went to Seattle, I saw my mast cell GI specialist.  I was drinking coffee when I arrived.  No matter what I put into my mouth, I get nauseous.  It’s not as severe with liquids, but it still happens.  I throw up a lot, and I know that it is due to my mast cell disease because I discovered that if I have taken IV Benadryl in the hour before eating that I don’t get nauseous.  But I can’t take IV Benadryl before every meal.  It’s not sustainable and I need to reserve this option as a rescue med.   

I am very transparent with my doctors.  I call, text and email them often.  My mast cell GI specialist is aware that I vomit so often that my throat bleeds.  I asked him at what point I need to be concerned about the blood.
“If you throw up enough blood to fill up a cup like that, you need to be concerned,” he answered casually as he made notes.  I have become someone who throws up blood often enough that it is not concerning. 
The lower GI fallout from eating is becoming more and more significant as well.  I have always had heavy GI involvement and my digestive systems sustains more and more damage with each passing day.  It was only a matter of time for me.
I keep eating, even though I know it will make me sick.  I don’t want to end up on TPN but I realize it is becoming a likelier option.  I’m just stubborn in this way.  I want to eat, even though it’s obvious that my body can’t. 
I am probably consuming less than 1000 calories a day most days, and of those, I am often throwing some of it back up.  I can generally keep down liquids, so I rely on those calories.  I spent part of my evening looking up elemental formulas online.  I do not want to be living this life sometimes.  I do not want to be a 30 year old woman who drinks formula.
I saw my immunologist a couple of weeks ago and laid it all on the table.  “It’s one thing to be a 30 year old woman who sleeps through days and shits into a bag.  It’s another thing to be a 30 year old woman who sleeps through days and shits into a bag and also can’t eat anything without throwing up.  That’s where the line is.  That’s my line, right there.”  I pointed to my proverbial line, stretching out between us. 
“Yea, I think it’s time to do something drastic,” he said, and I agreed.  We had a lengthy conversation about the molecular mechanisms, benefits and risks of various meds, monoclonal antibodies and chemo drugs.  We agreed to respectively reach out to the experts we had available to us and formulate a plan.  We have not yet reconvened, but the plan will assuredly involve some type of medication with very serious risks.  It will probably involve more lower GI surgery. 
Of all the qualities that have prepared me to live with rare diseases, this is the one I find most valuable – the ability to not blink.  I make the hard decisions with little hesitation and I don’t regret them.  If I were given a choice between living ten years and spending five in bed in massive pain, or living seven and living my life until the end, I would take the seven.   Without blinking.
I don’t know if being aggressive with healthcare is the better way, but I know that for me, it has always been the only way.  Some things are worth fighting for.  Even if you know you will lose, sometimes it’s worth it to fight.  I have to know that I tried everything. 
I have to live in this body every day.  I have to know that I did everything I could to salvage a life. 
We all have to make choices we can live with. 
So I make these choices.  And I don’t blink.