Tuesday, April 28, 2020

Bone Marrow-aversary

Saturday, April 25th was two years since my 2nd bone marrow transplant.  I know it may not seem like a big deal to everyone, but it's a huge deal for me!  I wasn't sure that I would be able to survive another transplant, because my body had already been decimated once.  It was so scary! I don't look at things like I did before my relapse of MDS.  After my first transplant, I truly believed that I was totally and completely in the clear from the "c" beast.  Now, I will never feel safe again!  It not only can come back, but it did.  That is why I think April 25th will be a very important day for me. Every year that passes is a victory.  I sometimes wonder if Hans thinks about the day too?  It's weird.  I still haven't received my consent forms to be in touch with Hans, even though I've asked three times.  I think maybe MGH just has a lot going on right now, so I'll be patient.  He may want to be anonymous and I'll respect his decision.  He's done more than enough for me already.  I hope and pray that he is healthy and doing well in life.

Anyway, Lee remembered my bone marrow-aversary and bought me a beautiful Swarovski crystal necklace.  Then, because I've been cooking my little fingers to the bones, we ordered Chinese food for dinner.  I've been wanting to order from Kai's Place for a while and this was the perfect occasion for a treat. Lee lit a fire in the fire pit and we roasted marshmallows for dessert. 

Peace, hand washing and social distancing peeps!🐥


Tuesday, April 14, 2020

Virtual Doctor Appointment

I'm so happy to be sharing some good news today!!!  My transplant doctor took me off of my anti-rejection medication!!!  He also took me off of my blood pressure medication, but I have to take my BP every day.  That's two less pills. I can't believe it.  I don't have to constantly be revolving my morning around my 10 AM med.  No more alarm on my phone going off to remind me to take it!!!  No more always making sure that I have an extra pill in my purse, just in case we aren't home at that time.  Okay, right now I'm always home, but you get my drift.  Some other good news the doctor gave me is that there have been NO cases of CoViD-19 on the transplant floor.  Believe it or not, I was concerned about the people on Lundar 10 (transplant floor).  I almost cried when he told me that.  Another step forward is that I only have to go for my labs every other month, not every month!  My veins jumped for joy!  Dr Mac is hoping to see me in August because I need more immunizations and I shouldn't get too far off  schedule.  It's been a good day. 😄😄

Peace, Faith and Hand Washing! 🙏

Easter Ravioli because they were yummy!!


Saturday, April 11, 2020

Another day in paradise! HA!

My two year bone marrow appointment in Boston is now going to be virtual.  I had to go to Quest yesterday to have my blood drawn and there was a crazy lady there.  I was in one of the rooms toward the back and the phlebotomist and myself heard this woman losing her shit.  It sounded like she rushed into the facility and was borderline yelling, "Helllooo, hellooo"!  The woman was right there, so her drivel wasn't necessary.  Then the nut job was going on about her father and how her and her brother have been taking turns caring for him since March first...blah, blah, blah.  This woman was telling her entire life story and neither myself or the nice woman taking my blood wanted to hear anymore of her inane nonsense.  I'm not talking about her being nervous about the pandemic, I'm saying she was out of control!!  When I finished getting my blood taken, I washed my hands and went to walk down the hallway to leave, but the woman was standing at the counter and there was no way to do the 6 feet  distancing.  I paused, hoping the she would move, but of course, she did not.  I was afraid that I would be at Quest for hours.  I was wearing a N95 mask, so I turned my head away from her, hoping not to catch the crazy, and sprinted out the door.

Lee was waiting for me in the car and I was telling him about the kooky woman and he reminded me that it was the same woman who was sitting in the middle of the road one day, after she was let go from her job.  Oh yeah!!!  I had met her once or twice, but I was honestly more concerned with getting the hell out of Quest.  It was my first time being inside a building since last month when I had my blood taken. 

The visit to Quest was a pretty stress inducing visit for me.  I was reminded of all the fears I had after my 100 days after my transplants.  I was isolated for so long that I was fearful to be out in public, even though the doctor said it was okay.  Be prepared people, this shit is going to happen to you and it isn't fun, but it does get better.  Anyway, I put on my mask before entering Quest, and the smell of it caused a PTSD reaction.  I don't know how I kept it together, but I did.  I was shaking a little bit in fear while I was waiting in the lab room for all the information to be put into the computer. It's a lot when the doctor is out of state. Actually, the wild woman, took my mind off of wearing the mask and the smell that brings me right back to 2 years ago.  The nuttiness helped me get through the appointment, well, that and the awesome person who took my blood.  After we got home, all I could do was still smell the mask, even though it had been off of my face for quite a while.  Finally, I put Vicks VapoRub under my nose and around my nostrils.  It helped for a little while. 

Right now, I'm baking bread for Easter.  So that smells awesome!!  Our son, Bill, isn't living home right now because his girlfriend may have had contact with a CoVid person.  He's with her in order to protect myself and Lee. (mostly me)  I made them eggplant parm for their Easter dinner.  Bill will pick it up tomorrow when he gets out of work.  I'm making Lee homemade raviolis and lemon something dessert.  I don't remember the name of it and I'm too lazy to move my laptop to go see the recipe in the kitchen.  It will be different holiday, but we are all healthy and that's all that really matters.  I'll let you all know how my virtual doctor appointment goes.

Happy Easter and Passover!!

Peace, Health, and I've got your 6 (a little double-entendre) 😘