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!