The beginning, Part 1

All this BS started about a year ago when my liver function tests were elevated.  This can be caused by a variety of things, fatty liver or a blocked bile duct and many other things.  My primary care physician originally thought that it was a fatty liver...from me being fat and not eating properly.  I went on the fatty liver diet and I lost some weight, but the enzymes were still elevated.  My PC doc decided to send me to a specialist after an ultrasound showed a poofy bile duct, meaning that they suspected a blockage.  After more testing including a CAT scan and MRI, it was discovered that my bile duct was blocked with a gall stone and there were also stones in my gall bladder.  Holy crap!!  My liver doctor told me that I needed a procedure called an ERCP and I would have to stay in the hospital overnight, because this procedure can cause pancreatitis and that can be dangerous. 

So, the ERCP is, in my opinion, barbaric!  A tube is shoved down your throat while asleep and laying on your stomach.  That's because you throw up bile during this and they don't want you to choke.  My abdomen was so sore after this and I also had bruised vocal cords.  Boy was my family thrilled when they found out that I couldn't talk much for a while!  When i was in the hospital, they decided to move me to another floor at 9:30 at night.  I would have been more pissed if I wasn't on dilaudid, but afterward I was annoyed and so was my doctor.  Recovery was quick and they had begun to bug me to have a colonoscopy and gall bladder surgery.  I needed a little break, but instead I got erlichiosis, a tick borne illness.  That will be addressed in part 2.

Here's my update for the present:
I just finished another week of chemo shots.  They are sore and it's a little difficult to wear jeans and underwear.  Never fear, I am wearing underwear!  No commando here!  Thursday will be Donor Lymphocyte Infusion #3.  Hopefully this will do the trick.  My hip has been sore on and off and I look at this as a good sign.  Hips are big bones, so in my case, when they are sore, good stuff may be happening.  The good cells might be pushing out the little f'er cells and I absolutely believe that is what's happening.  I'm staying out of crowded areas, due to the flu and all the bad germs flying around.  I'm being very careful.
Please keep the prayers coming!
BTW:  The infusion nurses at Danbury Hospital are awesome!!!

I'm doing okay

The DLI om Monday went well.  When I got to Boston, I headed up to the ninth floor for labs, then I waited until I got called in to see either Dr Mac or Chrissa (the nurse practitioner) and they reviewed my labs with me.  This time my platelets weren't so good, but that can happen after chemo and platelets are always the last thing to recover.  I remember during transplant there was an issue with my platelets recovering, so I don't think this is unusual...just annoying.  After the review of my labs, Lee and I headed down to the eighth floor to the infusion area.  My infusion nurse's name is Theresa and she will stay with me for as many infusions as I need.  Theresa put in an IV and drew some more labs for chimerism.  Oh yeah, my chimerism was slightly better from my initial labs.  It doesn't mean too much, but I look at it as going in the right direction.

Then, it was time for the infusion!  First thing is that I'm reminded what to look for if I get GVHD and when to call the doctor.  GVHD happens when newly transplanted cells regard the recipient's body as foreign.  When this happens, the cells attack the recipient's body.  I had GVHD in my liver with the original transplant.  It can also occur in the skin, gut or wherever the hell it decides to be a pain in the butt. So, I'm reminded that I may get a rash and it usually starts on the face and trunk.  I should call my doctor and get right to MGH (Mass General)  if this happens.  I may get diarrhea and that is fine as long as it doesn't get too bad.  If it gets bad, guess what?  I get to take a trip to Boston.  Man, I really hope that shit doesn't happen!  HAHA!  A long car ride, diarrhea and a new car, would not be a good combination!!

Anyway, a tech was in the room with a machine to defrost the lymphocytes that had to immediately administered after defrosting.  She was a very nice young lady who told us all about the flooding in Boston during the last snowstorm. Theresa came back into the room and hung up a small IV bag with the "stuff".  It actually looks like watered down blood.  I said that I thought it looked disgusting.  She told me to tell her how I really feel.  I wasn't being callous about the whole thing and I'm very grateful, but I still think it's gross. My vitals were taken before, during and after.  Oh, and I wrapped myself in the prayer shawl that the women at my sister Marlene's church made for me.  Isn't that extremely sweet of these lovely women?  The whole infusion was finished in about 10 minutes.  I didn't have any pain
in my arm from the preservatives which are larger cells that can cause discomfort.  My breath was a little stinky for the first day or so.  Kind of garlicky mixed with halitosis. PU!  All in all an okay day.  Now we wait, again.  I'll see Dr. Mike in Danbury every week to check my blood and I'll do another week of chemo starting on January 22nd.

Everything I do is outpatient, so please feel free to call or text, because I'm home and sometimes I get bored. I am staying away from big crowds because it's flu season and if you are even a little bit sick...stay away from me!  Actually, my friends are very good about this. The next post will be about the last year and how I got here.  Peace out for now!

Donor Lymphocyte Infusion #2

Tomorrow is my 2nd DLI in Boston.  This one will be slightly different from the 1st one because it will be a small bag IV instead of a syringe.  Also, the lymphocytes have been frozen, so I may have pain in my arm as it is going into the IV.  The preservatives for the freezing process will make my breath smell funny for a couple days and food taste weird.  I'll try to stay way from people while I stink. The joys of this whole process!

My skin is peeling like I had a bad sunburn, but only where I got the chemo shots.  Needless to say, any time I go potty skin is flying everywhere from my stomach shots.  I'm still kind of bruised where a few shots hit blood vessels.  The good news is that they don't hurt anymore!!  Boy, this is another crazy ride!!

The number one question people ask me is...how do you feel?  The answer is...I feel good!  I'm a little more tired than usual, especially on chemo weeks.  I haven't felt this good in a long time.  Last year was suckola!!!  I'll give the history in another post.
Please keep me in your prayers and I'll keep being positive!