Day +365: 1 year!

I have made it to the 1 year mark. So many things have happened in this past year. So many changes.

This week was supposed to look way different.  Sometime ago, I had decided, that no matter where my transfusion schedule was at, that I was going to celebrate my new "birthday" and do it up big. 

I was supposed to have left for NYC last night, and have 1 glorious week in NYC/Connecticut seeing my best friend and her babies. I was so looking forward to it!    

I've had some sadness surrounding the canceling of the trip.  While I know that it is the last place I would want to be right now...it still was a bummer. I haven't stayed sad for too long because I know that it's just what it is...and hopefully next years birthday will hopefully have travel involved.  Honestly, with the current pandemic, I am sure that health providers would not like me to get on a plane for the next year at least.  

So what did I actually do to celebrate today?  Because..no matter where I was...there still needs to be a celebration.  I have made it 1 year post.  No major complications/no hospitalizations d/t infection(I was worried about that happening) and I have been working full hours at work for quite some time!  

I started the day off by getting a transfusion.  It's been a month since my last one and my hemoglobin level surprised me a bit, in a good way.  Things are slowly improving.  Slowly.  But improving. My gift from the BMT team for 1 year was getting FIVE vaccines...all intra-muscular and one at a time!  Transfusions in the hospitals these days are quite different. I wore a mask the whole transfusion, as did the nurse, and everyone social distances(which honestly, I liked to do BEFORE this pandemic, if I am sitting in a chair, and there's a whole room of chairs-there is no need to sit by me!(I was always very irked by people who chose to do that. Lol.)

I received 3 units and will plan to go another month without transfusions.  After the infusion, I went down a few floors, to complete some research scans.  I completed research labs on Monday.  Tomorrow, I will have additional MRIs for the research done. This was kind of the best grouping of procedures that we could do.  We had to fight for the scans to get completed at this time...  Unfortunately we won't be able to get the one piece of information, that we really want, quite yet due to COVID.  I was supposed to have a bone marrow biopsy to peek in on it, and see the amount of modified cells in there.  We have a way to test that, by drawing blood, but it's not as great of a measurement.  We will get that on the books eventually..but who knows when.  I understand the reasoning of it all but it's still a test of patience.

Then I went home and rested.  The arm soreness is starting to set in.  In the adult transplant world, they just start the re-vaccination program, at one year post transplant.  They don't draw levels to see if immunity remained, they just go for it.  I received a couple today that will have the potential to make me feel crummy.  I was okay'd to have Tylenol on board for the next couple days-so that is what I am going to do!  

For dinner...we splurged a bit.  We couldn't go out and be in a restaurant but went to pick up some Benihana.  It was a good meal.  I have been cooking a lot during this quarantine time...and we really haven't gotten takeout.  We have had one pizza delivery on Easter...but that's about it!  I am impressed with myself.  

Despite being different than what I planned, It was a good day...

In the past few months I have noticed my energy and stamina coming back. I want to cook again..I want to get exercise in, and I feel like I can have fuller days.  I do still take naps though, if I need them...those will never go away if I can help it. My brain fog/concentration is still affected quite a bit, more than I expected.  But I am working on that, making lists, making reminders...it's helping...but slowly.  I am quite forgetful(which is so weird since my memory has always been pretty great) and it's surprising that sometimes word-finding is hard thing to do at times. Chemo brain...it's real.  Work in progress. 

 My platelets still have not recovered to a normal range. 
The team is hopeful that my bone marrow is still working on replenishing things. We are hopeful that my body is slow. 

I've done a lot of thinking.  I had a very small hope that maybe this transplant would provide the miracle of making me transfusion dependent but I knew that it probably was not going to end that way-at least in these first years.  When people find out that I haven't totally gotten rid of transfusions, I see sadness in their demeanor, and some question why I would do this process if it wasn't a guarantee. I can understand their questions, but for someone who has gone through my medical journey...this was a way for me to provide hope to myself for the future. I have a severe mutation of this disease...it's possible that there won't be a cure for me but this study is providing steps in the right direction.  At the end of the day, I am still so happy to have been a part of this. I would choose to do this again.  I will not give up hope and I think that we WILL see more of an improvement in my transfusion schedule.   My body is experiencing things that it has never experienced before(living life at lower hemoglobin levels with less side effects) and a small stretch(so far) in transfusion schedule.  It's a change and I will take it.  Prior to transplant, I was doing every three week transfusions-and maybe was heading towards every two week transfusions...

So today I celebrate the PROGRESS that I have made in this very short time. I continue to pray and hope for improvement over time...and would love if you'd join me in hoping for that as well. 

COVID-19 has posed an interesting threat.  I have worked in healthcare for 10 years and have never been worried about exposure to diseases.  However, due to the co-morbidities that I have had due to Thalassemia, the pandemic has forced me into self-quarantine. I have not been to work since March 16th!  It's so weird.  I have been able to work from home, so far.  I am staying safe and being good/following the rules.  It's getting a little long..but I'm in it for the long haul.  I have struggled with this a bit, though, because I feel like I am shirking some nurse duties that I committed to when I became a nurse.  I wish to be there with my work family and helping the cause...but I know that this is the best decision right now.

Oops. This is a long post.  I am sorry.  

I will end this post by saying "Thank-you".  This journey could have never been done without my family and friends.  You have been my support system, cheerleaders, and life-savers.  You've given me your time(my mother-in-law, Pat, has so graciously been at MANY, MANY long doctor/infusion days), my Dad has made long drives down to be with me/deliver good, you've given me meals that have sustained us, your thoughts/prayers/support and ENCOURAGING words.  I could have NEVER done this journey without you.  I will ALWAYS be trying to find ways to give back to others, in the ways that y'all gave to me.  

Happy 1st Birthday, genetically Modified Bone Marrow. It's been one heck of a ride so far.

-Trinayani