Wednesday, April 25, 2018

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!💓

Sunday, April 22, 2018

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

Friday, April 20, 2018

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.

Tuesday, April 17, 2018

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!

Saturday, April 14, 2018

Testing all day yesterday

Hi! I hope everyone who lives around me enjoyed the beautiful weather today!
It was a very nice day today, but yesterday was icky.  Lee drove me to Boston for my pre-transplant work-up.  We left the house at 8:00AM and arrived home around 8:00PM.  My first appointment was with the transplant nurse who took a thousand gallons of blood.  Really it was only a shit load of vials.  Then she explained the differences between this time and last time.  The MAJOR difference is....I can leave the room this time!!!  I can't tell you how friggin exciting that is to me.  I have to wear this new super duper face mask when I leave the room and the physical therapist has to give me the okay, but I can leave my room.  Yippee!!!  There is also a gym on the floor.  Patients can sign up for gym time and no other patient can be in there at the same time.  They disinfect the room between patients.  I don't go to the gym now so I'm not really seeing that in my future, but I might get bored enough. My chemo protocol will also be different.  There are better chemos now so I need less and the side effects aren't as bad on my stomach. Everything else was about the same except I can wear my street clothes. 

The next appointment was with the social worker.  She meant well, but it wasn't the best experience in the world.  She caused some commotion by things she was saying.  One of the transplant coordinators stopped in the room to meet me. We have spoken on the phone a few times and I had told her about my book.  She told me that she bought it and loved it!!  She said it helped her to learn exactly what a transplant patient goes through.  Very cool moment.  Then, my doctor came in and made both of us feel a little better.  He thinks I should do well.  Lee came up with the idea that instead of seeing a Danbury doctor in between Boston visits, after transplant, that I should go the Yale. My doctor liked that idea and he said he would talk to Yale when the time comes and he'll get me in with another transplant doctor who will understand the nuances.  Dr. Mac (Boston doctor)  also said that my case in unique, because I still have my sister's immune system, but the other cells are mine.  So, I guess, the rareness continues!  Lucky me!!😏

My other appointments consisted of an EKG, an ECHO, chest x-rays and a pulmonary function test that we practically had to run through the hospital to another building to get to.  Here's a funny story.  When I was meeting with nurse who drained all of my blood out of me, she asked for a urine sample.  Of course, from riding in the car for almost 3 hours, I peed as soon as we got to the hospital.  She gave me the cup and vial in a plastic bag and asked me to return it when I could"go".  Well, after we ran (not really, just a brisk walk), to the pulmonary function test, I had to pee.  I used their facilities and prepared my urine sample.  I had to go badly and feared peeing all over while breathing all kinds of weird ways.  There I was, for the rest of the day, carrying around my peepee, in my purse, making sure it was standing up, until I could get back to my doctor.  When I finally took it out of my purse, I realized that it was sitting on top of my lipstick.  Thank goodness it didn't leak and Dr Mac was cracking up. 

My timeline has changed a little bit.  I will be admitted on April 19th and transplant will be April 25th.  People keep asking what I need, so here are some rules for transplant patients:
I'm not allowed and flowers or fruit.
I'm only able to read new books, but honestly the chemo usually makes it too hard to concentrate.
I won't ask anyone to buy me underwear! LOL!
Send me notes and cards. It's nice to have the mail to look forward to everyday.  I'll post the address when I have it.
Don't be afraid to call me.  If I'm not feeling well or too tired, I'll tell you.  If I sound weirder than usual, don't be offended! 
My number one request is for people to please do bone marrow drives in your community, place of business, colleges etc.  I'm one of the EXTREMELY lucky ones to have 2 donors, many people can't find one.  Contact "Be the Match" for all the information on how to do a drive.
Enjoy the rest of the weekend, I know I will before my time in the clink!
Peace out peeps!

Sunday, April 8, 2018

Guess the blood type???

Who wants to guess what my new blood type is going to be?
With my first transplant my blood type went from B positive to A positive, hence the name of my best selling book..."Be Positive to A Plus".  Okay, it's not really a best selling book, but it could be if a million more people purchase it!!  HAHA!

I don't know anything about my donor at this point so I thought it would be fun for people to guess
1. blood type
2. gender
3. age

I'll guess first and there is not a prize for the winner!
1. AB positive
2. male (yes, I could go from XX to XY with a chromosome change)  weird huh!
3. 29 yrs old

One more thing, I added a blue "follow" box to the right, so if you want to keep up with all my crap, please follow.
Peace out Peeps! 😀

Saturday, April 7, 2018

Newest info and nice story

Happy Saturday everyone!
I received some new information on Friday.  I do have a donor match and they have agreed to save my life!!!  How lucky am I that I had my sister willing to be my donor 11 years ago and now a stranger!!!  So I've had two amazing people step up to the plate for me and I can never thank them enough.  There are no words that are appropriate enough to convey my appreciation and admiration to these two amazing human beings. 

I will be admitted into the hospital on April 20th and the transplant will take place on April 26th.  Hmmm, an April re-birthday, isn't that birthstone diamond.  Very interesting...hint,hint.  The days proceeding the transplant will consist of lethal doses of chemo.  Isn't that a terrible way of saying it?  I consider it only being lethal to the MDS.  Good, kill that shit!  But, be good to me!  I will be getting different treatment this time, so I'm not sure what to expect.  I'm just going to roll with it.  I'm trying to see my friends before my extended leave and I'm organizing some stuff.  I'm definitely feeling emotionally better than I was earlier in the week.

The whole terrible experience of trying to get a second opinion came to an end.  By the time all the paperwork was checked by Yale, they said they needed more.  They wanted things from different departments and it needed to be mailed to separate places and reviewed by them and then I would get an appointment.  This nonsense has been going on for weeks.  Finally, I said "That's enough"!  I was pissed and I decided that I don't want to spend my next 2 weeks running to doctors and besides, I will probably be in transplant before any of it happened.  So, I freed myself of one of my stress inducing chores. 

The other day I was on the phone with my niece, Meredith, and I was telling her that I wanted a Vera Bradley duffle bag to bring to the hospital, but I didn't really like any of the new designs.  She told me to send her pictures of what I liked and she would check out the Vera Bradley outlet near her house in Myrtle Beach.  They carry some of the retired patterns.  Later that day, I started getting text pictures of duffle bags from Meredith.  I liked 3 of them.  So Meredith said she would pick one out and surprise me.  We were both excited!!  I couldn't wait to see what she picked out for me and she was excited to surprise me.  This morning my doorbell rang with my package and I was even more surprised than I thought I would be.  Not only do I LOVE the duffle she picked out, but She sent me a notebook to write things down for my next book and a very soft scarf to wrap around my head when I'm bald. Meredith also wrote me a note that made me cry!  My spirits have been lifted by my incredible niece and I'm going into this with a better attitude than  I've had recently.  Thank you Meredith, aka BGC!

Monday, April 2, 2018

Freaking out

Today I spoke to the transplant coordinator to see if they found out anything about a match.  She didn't have all the information yet, but it looks like there are some very good prospects.  She also told me that I have a tentative admission date of April 19th.  I felt like I was sucker punched when I realized how soon that is and I'm not remotely ready.  I thought that I had dealt with my emotions until...I got off the phone.  I put my head down and started crying.  All I could think is how much I don't want to do this again.  It's not fair!!  I already did this once in my life and I can't believe that I have to do it again.  I'm scared.  Really scared!!  I don't want to be locked up in a room again. I don't want to be sick again.  I don't want the fevers and diarrhea and anything else that this may bring. I don't want to shit in a hat.  I don't want to be constantly bored and lonely.  I don't want to shower with instructions.  I don't want to be far away from most of my friends and family.  I don't want the isolation from people and all the medication. It's just not fucking fair!!!  I already did all this shit with a good attitude and this time, I'm having a harder time.  I ultimately plan on being my badass self, I just don't feel like it right now.  I want to cry and be angry for a while.

This whole nightmare reminds me of my dad.  For those of you who don't know, my dad died a month after I turned 17 and a week before I began my senior year of high school.  I was kind of mad at him for a really long time.  I couldn't understand why he didn't tell Jesus that he needed to stay.  My dad had his first heart attack when I was 7 years old.  There were many additional heart attacks throughout the years.  My family watched my father get weaker with each new heart incident.  They didn't have all the advances in heart procedures that they have now and if this happened today he probably would have survived much longer.  He was 54 yrs old when he passed.  He did tell the story about leaving his body during one of his heart attacks and going through a tunnel and seeing a huge white light.  That's all I remember of the story.  About two years ago I ran into one of my father's closest friends, Joe.  Joe told me that the week before my dad passed, my mother called him and his wife to say goodbye to my dad.  Joe and his wife were in my dad's hospital room and my mom and Joe's wife, Pat went out for a cigarette.  Joe said to my dad, "Johnny, now is the time to make your peace with God".  My father responded that he already had and he wasn't afraid to die.  Joe told me that he thought of that conversation many, many times through the years.  Joe passed away on my birthday last year.  I hope and pray that he wasn't afraid to die either. 

I've realized through my illness and also getting ill at a young age, that my wonderful, loving father wasn't supposed to live any longer.  It wasn't his choice, just like me getting sick isn't my fault.  I know if he could have danced at my wedding (both of them) and met my son he absolutely would have.  I don't know if our lives have a blueprint that we help write before we are born or if God lets things happen because we all have free will and everything is connected or maybe a little bit of both.  I do know that I'm not mad at my dad anymore for dying.  I relate to him in so many ways.  Now I understand the emotions he went through (and never showed us) while he was facing his own mortality.  I know why he would get a little grouchy sometimes. I do the same thing.  I didn't get the opportunity to say goodbye to my daddy and I understand why he didn't want me to see him that way.  I was also really mad at God the first time I got sick.  I'm not mad at Him either.  I'm just trying to trust in God.  I'm going to be scared and cry when I need to and be brave and strong at other times.  Today is a big time crying day, but tomorrow will be better.  I'll get through this as gracefully as possible and think of my dad every step of the way.  He's a great example of an incredible human being!
Peace out peeps