While we were in Chicago, we met up with amazing people in different phases of HSCT process. Some of them are in the hospital, either had a transplant or about to. Others were waiting for evaluation, few gals were awaiting insurance approval.
It is amazing to meet everyone and feel such hope, full of dreams and possabilities. It was truly an honor to meet each and everyone of you.
Sergei and Lana
Happy Birthday to all the peeps!
Carina, came in for her 6 month follow-up
Bobbie Jean you stole my heart, what a beautiful soul you have!
Lee Lee, saucy and spicy lady! At the time of our visit, awaiting transplant, you go sister!
Jackie, sweet, kind and beautiful woman, had her transplant the next day of our visit. Happy Birthday gorgeous!
Jay! An inspiring young man, so much fire! Just finished his mobilization.
Tonya, beautiful young woman, has a whole life ahead of her to be free of the monster! Just finished her mobilization.
From left to right, Ellie, Maureen, Daniela, your truly, Bonnie, an amazing group of women, you made my heart so full. I cannot wait to meet all of you when I come back for a yearly check up!
With Boys! Daniela’s hubby, what a sweetie!
Jordan, sweet and smart young woman, had her transplant that day!
Realized today that I have not updated my blog.
Met with Dr. Burt and Dr. Balabanov last week on Wednesday.
I stressed my self out to the point where I had ice pick headaches, pain in my ear, just drove myself nuts. It was truly scary, did it work, did I do this for nothing, what if I still have active lesions and on and on. Sergei was thinking same thing, making plans for what if.
So my appointment day. I do not even remember what Dr. Burt said or asked. I just remember him sitting down and saying no new activity and old lesions shrinking. That moment I collapsed into Sergei’s arms and tears poured out. So much relief, bricks fell off my shoulders. HSCT, stem cell transplant worked, sweet words of remission. Since my diagnoses I have not been in remission, it was a relapse after a relapse. I do not have enough sufficient words to express accurately how it feels. It is surreal, I can dream of things I use to dream, I have a chance at life without limitation. Feels unreal.
Met with Dr. Balabanov next, he confirmed what Dr. Burt said, he was elated with how well I am doing. My EDSS score dropped down so significantly.
With all of those news, I do have to see a bone doctor and get an MRI on my hips. Steroids and chemo might have did them in, hip replacement is one of the options if it will be confirmed. However, I am not looking to do it until I cannot move!
The news of remission cannot darken anything, I can live with bone pain, I am not progressing, I am regressing 🙂
So news are fantastic!
Thank you to everyone for your support, all the kind words,to everyone who lifted my spirits and showed me so much love, Thank you!!!
We are going to be in Chicago on Monday the 21st of this month until Wednesday for 5 months follow up with Dr. Burt. A month ago new symptoms started to come out, feels like a relapse, but who knows! So, got a call from Dr. Burt and he asked me to come in. So here I come! While we are there would love to meet anyone and everyone who is there in Chicago. Please, see the video and leave a comment if you are available or would like us to come by.
So…4 months post HSCT. I think for a lot of people, can’t speak for everyone, issues do come out after month 3. I happen to be one of them. Perhaps it is due to steroids wearing off or chemo, I don’t know, it is not my field of expertise but it does happen. My balance has started to shift again, the gate of a puppy or a baby, looks funny. Legs feel like led, by the end of the day I truly do not want to move. The crazy fatigue is back into it’s full force, some days it is truly worse then others. UTI is back, woot! I suffered from incurable UTI prior to transplant, and seriously it was incurable, I could take huge dosages of antibiotics for it to return in two weeks time at best. So here we go again!
I am going back to Chicago this month to see Dr. Burt. He called me out of the blue asking me questions and wants to see me now, to evaluate the current situation, lets hope this is not a relapse, hope…
But hey, it’s life, it throws curve balls at you and I take it, one hit after another, sometimes I even come out stronger, and sometimes it takes me down, down on my knees, whipping, begging for it to stop. Bring it, I take it, I can do it all, right? Yeah…sometimes I can. We are all allowed to be weak once in a while, otherwise, we fight, we move forward and we make lemonade out of lemons.