VERY BIG, UNEXPECTED NEWS, TODAY!!
It’s a gloriously sunny day today with a high of 75 expected and the climate within my room has also hit a fever pitch. I arose early, knowing that today would be filled with lots of “lasts”. IV drips, blood draws, bloodwork results, and, finally, the big one…MY CATH LINE WOULD BE REMOVED. Of course, they never tell you exactly when, other than “before lunch” or “after lunch”. BTW…I quickly recovered overnight from yesterdays’s semi-sedated stupor of an infusion.
In addition to my cath line being removed, yesterday, Dr. Fedorenko informed me that, based on the fact that I had so many enhancing lesions when I arrived here…10 to be exact, and the fact that my MS had never responded to any immunomodulating (MS) drugs in the past (10% don’t), that he was going to do something a bit out of the ordinary and order another MRI of the brain, today, to see how those 10 lovely lesions responded to chemo. He also said that he wanted to be able to document it for their records, a patient with highly drug-resistant MS and its response to HSCT. Off I go flying through the underground tunnels and over to the MRI department and back to my room by 10:30 a.m. Dr. Fedorenko just left my room after a long, serious, uplifting and promising discussion. He said that he had “very good news” and proceeded to say that “NONE, of the the 10 lesions enhanced.”!! Not a single one and that my MS had been “Halted”. I proceeded to ask him what that could possibly mean for me in the way of potential reversal of symptoms. For future HSCTrs out there, you know that this is the one time in your MS life that you WANT to have enhancing lesions when you begin treatment, because that still means that there is potential function (like we saw when I first started chemo and started seeing some small improvements). He said that it was the best case scenario that I could have hoped for and that I should see optimal results with regard to improvement. This is the very thing that I have disallowed myself to hope, dream, wish for. That would have been selfish. Halting the disease would have to be enough, and I was 100% down with that. That still would have meant that, for once in 12 years that I controlled the MS and not the other way around. So, what was meant to be a day of lasts, also began a day of firsts. My first MRI in nearly 12 years that didn’t have some type of enhancing lesion. The first day that I can begin to think “In a year or two, maybe I could do X”. The first day to really accept that I could be living an MS-free life. It’s a lot to bite off, and it’s going to take some adjusting on my part. Fear has been the undertone of my life for so long, that letting go of that fear may not be quite as easy as you’d think. I WILL OVERCOME. I HAVE OVERCOME. I knew I said I wouldn’t say it, but “PRAISE, JESUS!!”. 🙂
MORE ON THAT CATH REMOVAL!
I was under the impression that the subclavian catheter line that was inserted over two weeks ago, would be removed in the same mini-surgical center where it was placed. Gilenna, one of the head nurses, taps on my door at around 12 noon, peeks in and points to my shoulder/chest area, motioning as if to say “Are you ready to have that removed?” I was nodded YES!!! The thought of an unobstructed shower was floating through my brain. So, she nods and takes off down the hall toward the surgical center, and I follow behind. She turns around and says “Nyet, nyet.” and waves me back to my room. I’m like, they must not be ready for me yet. She then comes to my room with a little packet of goodies to removed the cath line, right there in my room. Cool. She has me lie on my back, takes off the bandages, makes two little snips to remove the stitches that had been holding the cath line in place (I didn’t feel a thing), and she squeaks out “Duh! (yes)”. I open my eyes, and there she is holding the cath line in her hand and beaming from ear to ear. I felt absolutely NOTHIING. SWEET! Below is a pic of what has become my very best friend over these 2+ weeks. Never a pin prick. Never a missed vein. Never a bruise.
Here I am, on what will be the last night of my stay in this top-notch facility. I am sad to say goodbye to the staff. I am excited to say hello to room service and maybe a little souvenir shopping. There could not have been a better outcome for me here. How often does that happen…right across the board? Humble doesn’t really cover it. All I can say to any of you considering your HSCT in Moscow, is that you will NEVER regret making that choice.
Peace, love and healing…from Moscow.
Praise Jesus? Every day and in every way. It is a glorious morning here in the Cove and I couldn’t be happier or more thankful to read what is happening on this day in Russia. Enjoy your days of relative freedom with your Mom. Do as much as you can within the boundaries of what is good for you!! You may have said you wouldn’t say it, but I can’t help but say it. Praise Jesus from whom all blessings flow!!! Love & Prayers continue for you and your Mom.
Thanks for all the pajama prayers, Karen. You’re dangerous in a nightie!! ha ha
The absolute best news! So happy for you and Doug and Carson….. The future looks great! and I’ll second that…..Praise Jesus!
what great news Brroke. Tears in my eyes and joy in my heart for you. I’m sure you can’t wait to get home and see family and friends.
great you could have your mom with you the whole time. Believe me — she wouldn’t want to be anywhere else. Lots of love to you both.
Cheers to my Erie crew! Hear them roar!
Oh Brooke how wonderful to hear, that I cried! I have been praising Jesus the entire time you started this because His plan can be the only way. He has given you possibilities beyond your imagination and I am ever so thankful you took advantage of investigating all of this! YOU have overcome this disease! Much love to you and your mom, safe travels, have fun shopping and can’t wait to see you! xoxox blessings from Bedford
Rock on Sister!!! A future without the “MS cloud” hanging overhead, imagine the possibilities!! xoxo
As my friend Kristy is on her way there to begin her journey, reading your updates have meant the world to me. Congrats on your courageous battle to take back your body from MS!
I can’t wait to see Kristy beat her MS as well. She is in good hands here. Dr. Fedorenko will take very good care of her.
Congratulations! You have killed the beast, now your future begins!
That is such good news, I am so excited to hear about your continued improvement,
A question…..if you don’t have enhancing lesions does that mean you will not have improvement, only halt the MS? Is it possible that the MRI doesn’t pick up the lesions. As you can tell, I am getting nervous about this.
Thanks for your patience with my questions and ENJOY YOUR ROOM SERVICE,
Jane, you are absolutely correct when you say that it is possible that MRI is oftentimes unable to see all underlying enhancement. Dr, F. and I had a detailed discussion about that and the fact that there can be improvement even though no enhancement is seen on MRI. And, at the very least, it will halt the disease. Please know, that even though I had enhancing lesions, there was, and still is, no 100 guarantee that I will see reversal. But, I won’t be getting any worse, either. It’s a gamble we all have to take, and it’s well worth it. My strength to you Jane. There is a spot waiting for you here in September. I can’t wait until you’re here.
You are a wonderful person and I am going to show some strength like you have inspired me to.
I hope you enjoy every moment of your free time in Moscow and your flight home. It must seem surreal. Lots of love.