Here's a quickie update.
Just for information purposes (thank you Kathleen), "Kiki," as N and I were talking about in our video, actually means "quicky" in spanish.
Oopps. All you Kiki's out there might want to rethink that nickname.
I'm in Brigham and Women's. Surprise. I'm on Unit 10-A.
My cell phone is dying and I don't have my charger. Email, call, and I can get you my # here.
On sunday, I started feeling crampy and uncomfortable. I started having "bowel" problems that no amount of immodium wanted to fix.
On Monday, I called Melissa (Df's all-star NP), and she thought I may need to go to DHMC for a "Buff 'n Shine" (That's some tests and Fluids).
With the hospital's teamwork, I was in and treated quickly and efficiently. . .
On a Monday.
J and I came to DF this morning. I was still having loose stools and severe pain.
I stopped taking my mag (it causes diarrhea) and added lomotil to the mix (to keep myself from living on the toilet).
It's been about 60 days since my transplant, around this time patient's can start getting signs of GVHD.
The dreaded Graft vs. Host Disease.
I try to explain GVDH like a relationship.
Accepting my new immune system as a part of myself is a little complicated.
It’s part science, part art.
I say it’s like falling in love. I kept my immune system. I gave a little lee way, my donor’s system takes over what may body has allowed.
Kind of like a relationship. Give and take, just testing the waters. Not ready to give up the apartment yet, just kind of sneaking our clothes in each others closets.
That’s what the first 100 hundred days are for. We’re checking to see if this relationship will work out, and maybe how much damage it could do me for the long haul.
Well, my old immune system and my new one have gotten in their first knock-out-drag-out fight over my bowels.
If I have “graft versus host disease (GVHD),” and I don’t know I do, it’s good.
My systems are trying to work it out. It’s a part of the process.
It does not represent a major setback in my healing.
I’m doing just fine, thank you. Except for the EXTREME PAIN that will make me curl up and did make me drop some tears.
My immune system is my new transplanted organ.
In this relationship, we’ll call her Simone. That was my parent’s second name choice for me. My system can also be known as “Sim” or “Mona” or any variation (keep it clean, people).
Sim may see my bowel and not recognize it. She’s in my apartment (body) and redecorating. My bowels DO NOT BELONG. She’s trying to kill it off. I’m fighting her on it.
This is where the pain, cramping, and diarrhea may come from.
If you’re interested, my eosonophils are elevated (a type of white blood cell), which indicates GVHD.
I’ll be getting a CT tonight and maybe a colo tomorrow.
I’ll be at B&G until Thursday at the very least getting well taken care of. Big thanks to Christa, my girl that’s been taking care of me since my LDH.
You know how to find me. Remember, no worries.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."