Two transfusions

Yesterday Consisted of transfusions.  The first one was blood and they used 0 positive (universal donor). The afternoon transfusion were platelets. I have always had a reaction to transfusions so I was pre-medicated with Benadryl. These two transfusions bumped up my numbers so I wasn't as tired yesterday afternoon. The carnage with my stomach has not improved, but I think that I've devoted enough time to that subject...oh except I have lidocane for my sore butt.

Since I got here my bed had this metal pole running the length of the bed.  I never complained about it, until yesterday.  I think my fat ass compressed the memory foam to the brink of demise.  It was waving a white flag of surrender.  I think I heard it weep once or twice.  Anyway, I told my night nurse and she got me a new bed!!!  It felt great to sleep and not feel like my bed was taking advantage of me. Maybe my hiney wasn't sore from diarrhea, hmmm. 

Lee has been working hard to clean and fix up the bedroom.  So far, he has taken down the cornices, ordered and put up curtains, painted the room, bought a new air-conditioner and installed it, put the summer comforter on the bed,  bought me a new pillow and ordered new sheets. PHEW! He's been a very busy boy.  I can't wait to see it!  My environment at home needs to be very clean before they will consider letting me go home.

Many people have asked me when I'm going to be home and my answer is, I have no idea.  I've been here two weeks already and it could be another two to three weeks.  It all depends on when my numbers (blood counts) go up high enough that I won't catch every illness flying around.  I'm shooting for Mother's Day weekend, but that might be a little ambitious. Please feel free to ask me questions.

I have a question for you guys...Where are my cards?  Thanks to my step-son and his wife for sending me funny notes and thanks to my great-nephews and niece for drawing cards for me.  That was my only question. 

Peace out Peeps
PS I'm having baking withdrawal.🍪🍪

Another day, another bout of stomach cramps.

It's been almost a week since the transplant and things haven't changed much.  All my number have been going down, which is good news, but I have to be even more careful about germs than I was before.  My day consists of waking up around 4 AM  to have my vitals taken, labs drawn and weighed.  This is the time that the stomach cramps usually kick in  and the hershey squirts are not far away.  I wait until eight or eight thirty for my day nurse to come in with a dosage cup filled with pills.  This is different from last time because 11 yrs ago many of my meds were given IV, now they are pills.  I guess if I was barfing they would do IV.  I may dose off briefly during this time.  My nurse and I decide on a good time for me to shower.  My care team shows up around 10 AM  and they ask me questions, mostly about my poop, and they listen to my lungs. My care team consists of my day nurse, the bone marrow doctor who is in the rotation this week, a nurse practitioner, some woman in a white lab coat (I haven't figured out who she is yet).  We discuss my plan for the day.  The rest of the day is usually vitals, potty, mouth rinses and sleep.  Some days I have company.

So, Sunday was a really bad day.  The cramping was so severe, that I had to cancel any visitors.  Luckily, the meds made me very tired and I slept most of the day and night.  Saturday was nice. My sister, Marlene and nephew, Jimmy visited me in the morning.  Jimmy picked Marlene up from the airport and came straight here.  There is nothing like family to make a dreary hospital room, home!  Marlene was here yesterday too with Justine.  Oh my gosh, we were laughing hysterically!!  It's amazing how much better you can feel from belly laughing.

I just found out from my day nurse that I need a platelet transfusion today.  This isn't unusual, but I do need to shower early, because I have to be pre-medicated. I have a tendency of getting hives from blood and platelet transfusions.  That's all for now.

Peace out Peeps

Day 0, Transplant Day!

Transplant day was very uneventful.  The nurse came in and put Hans' (I named my donor that) cells on my IV pole. Lee, Bill and my nephew, Jim were here during transplant.  Justine, Jim's wife came to visit tonight.  I love my family The whole thing took 21 minutes.  About a half hour later I started shivering a little and when my nurse came in we realized that I had a fever.  They took many cultures and a chest X-ray.  It's not unusual for this to happen, so I'm not overly concerned right now. A little Tylenol and my fever is slowly coming down. Do you know that it's kind of hard to type with that heart rate thing on your finger?  Oh, and it isn't easy to pee and poop in those stupid hats either.  The other day I didn't notice that someone didn't put the seat down on the hats, so I sat directly on them and pinched my ass.  Ouch!

So, I haven't blogged for a few days, because I was very crampy and queasy.  I basically felt like cocky, in more ways than one!  I slept pretty much for 2 days and 2 nights.  This morning I had another bout of the cramps, but this time they knew which pills would work best for me.  Yah!!  I have a whole mouth cleaning ritual with rinses and brushing my teeth.  This is to help keep away mouth sores.  I haven't eaten in 3 days and the doctor told me this morning that they are going to start a TPN (IV nutrition) tomorrow.  I've already started my IV antibiotics and I'm really hoping that it doesn't bother my stomach more.  This morning a physical therapist came to see me and she said some annoying things.  Like, do you want to take a walk.  Let me see...NO, I have cramps and diarrhea.  BTW, she already knew that.  Then she asked if I want to go to the gym when I feel well enough.  By the time I feel well enough, I'll be heading home.  I don't mind doing things when I don't feel like puking or pooping constantly.  Finally, I told her we can play it by ear.  She stopped back this afternoon and I pretended to be asleep. All the doctors and nurses have been incredible.  I hope these cells like me!!

Peace out peeps!💓

Feeling Icky

Well, the chemo has begun to kick my ass.  I spent most of this afternoon in bed with bad cramps and yucky diarrhea.  Not diarrhea in bed, that would really be gross, but not unheard of for me.  My appetite is also in the crapper. Ha! I did get up and go for a walk at 5:30 am and I took a shower, put on cute clothes and then the badness set in again.  Sleeping for any length of time is absolutely impossible.  The longest stretch I've slept since I got here was 3 hours.  Besides the fact that I'm getting fluids pumped into me constantly, so I pee massive amounts, I'm also awaken for vitals, meds and occasionally noise outside.  Tonight is my last chemo so hopefully my stomach will calm down in a couple days,  I get two days off and then Wednesday is the big day!  Transplant Day!  It's time to pee again.
Peace out peeps

Busy Place

Yesterday I had my triple lumen put into my chest in an operating room, then I waited hours for my room to be ready.  It wasn't too bad, because Lee and my niece Justine, kept me company.  Last night Jimmy visited for a little while and chemo began.  One of the chemos is the same one I had last time, except this time it's a larger amount every night for 4 nights.  The higher dosage can cause seizures so I'm on an anti-seizure medication too.

 I took a video of my room and hopefully I'll get a strong enough signal to post it at some point. I've been told that I have one of the best rooms on the floor.  I'll try to describe it.  When you walk in there is a station for the nurse to input all the vital information into a computer. To the right are all my sheets, towels, johnny coats and pads for the bed just in case I crap myself.  Next to that is my closet to hang some clothes and a safe for any valuables.  Next to that is a long shelf where I put my t-shirts and notebooks, a copy of my book (to be a little self-promoting) , adult coloring books and sudoku books.  I ❤ sudoku!!  My bed is on the wall across from all that and the crapper is to the right of the bed.  As you enter the room, directly in front of you is a wall of windows with a couch and chair in front of them.  I'm sitting on the couch right now typing.  The view is freaking incredible!!  I can see the gold dome of the State Capitol, the clock tower at Faneuil Hall and all the planes taking off from Logan airport.  I thought it was beautiful during the day and then last night with the skyline lit up...unbelievable!!!  Can you tell that I'm enjoying the view?

I had a small bump in the road last night when my blood pressure decided to get very low.  Thank goodness it corrected itself.  This morning I had some stomach issues after breakfast, but I'm feeling better now.  I think my body needs to get used to all the chemo.  I took a shower and I'm following my mouth regime, which includes a lot of brushing and rinsing.  The food sucks, but I'm pretty sure that is no big surprise!  I could't really eat the eggs this morning, they smelled funny, but I was able to eat a couple chicken tenders for lunch.  I'm enjoying having all my meals made for me and delivered!  I mark off what I want and it appears.  Is this what it's like to be a husband?  Only kidding...kind of.

They are keeping me very busy here.  I'm awaken many times during the night to take my vitals and then I chat with whoever comes in my room.  One of my nurse practitioners is a retired Navy Lt. Col. He served in the Gulf War and Afghanistan and his son goes to school in CT.  We have quite a bit in common so it was a nice visit.  I also had a Chaplain, Eucharistic Minister, a person who cleaned my room and a dietitian. I'll start more chemo at 5:30 PM.  I'm feeling confident.

Peace out peeps!

Address

Massachusetts General Hospital
Lunder Building Rm 1018
55 Fruit Street
Boston, MA 02114

I'll post more, once I'm able to get my laptop connected to WiFi. Hopefully I'll figure it out today.

About my donor

I just received some basic information about my donor.  It's a 38 year old male from Germany and his blood type is 0 positive!!  Third blood type in my lifetime  and my chromosomes will change from XY to XX!!!

I'm wondering if I will start adjusting myself in public or watching TV with my hand down my pants.  I'll never have to ask for directions again and beer burps will be epic.  Oh wait, I won't have to pay attention when Lee speaks to me!  Maybe I'll just want to bite my nails off instead of polishing them. I bet I'll start laughing hysterically when I release gas and be proud when the odor permeates the room. Then, I'll look around and pretend I wasn't the one who just farted. Maybe football will be life and maybe I'll completely relate to Tim the tool man Taylor and make a strange grunting sound. Will Home depot  become my home away from home? Will I spend an hour looking for just the right flange? I will not sit with my legs wide open and use Axe products. Could I experience going commando? Umm, no. Hey, if I come out of retirement maybe I'll receive appropriate pay!  Who am I kidding, I'm not coming out of retirement! 😏 

All I know for sure is that a huge part of me will be 38 years old!! Booya!!!

That's all for now, I have to finish getting my shit together for Thursday and thinking of a title for book #2.

Peace out peeps!