I apologize for my delay in posting. Technical difficulties beyond my control! I have every intention of blogging on the regular from this point forward. Let’s start with Friday.
FRIDAY, MAY 3RD
Solumedrol – High-Dose Steroid:
Friday morning I began my first of five days of the IV steroid, Solumedrol. The normal protocol is three days, but, due to my large enhancing brain lesion load, he chose to administer it for five days (1000mg for the first three days, and 500 mg for the last two). This is not my first Solumedrol rodeo. I have been required to take it three times in the past.–Two times for optic neuritis and one time as a “maintanence” followup to the optic neuritis. My relationship with this drug is a love/hate situation, wherein, it hastened the reversal of my optic neuritis, but left me feeling like I had been hit by a bulldozer in the drug’s aftermath. My average turnaround time to get back to feeling any sense of normalcy was about three months. My neurologist now has a hot pink sticker with a skull and crossbones on my folder that warns to never prescribe it to me again. As I describe it to my neuro, I tell him it makes me feel like what I imagine death/dying to be. So, imagine my dismay, when I discovered that would be the first treatment that I would receive as part of the transplant protocol. I trust Dr. Fedorenko implicitly, and, so far, short of the full on cry that I had immediately following my first infusion…I think I looked at a cup or something ha ha, I’ve had minimal side-effects. I freaked mom out, because she knows I’m not a crier. I just kept saying through the sobbing “It’s just the drug. It’s just the drug.” Typical side-effect. No worries.
It was immediately after my infusion that I decided it was time to record my “before” walking video in order to document my current disability status and to be able to compare to any improvements that may occur post-HSCT. It was after previewing that video on the camera, that I did do a very genuine whimpering kind of cry. Think about it. How often do you ever see yourself walk? Other people see you walking, but you never see yourself walking. Yes, everyone knows that I walk with a limp. I know that I walk with a limp, but I never see it. I just live it. I took one glance at the video playback and crumbled. It was right then and there that I decided to post it on the blog (not originally my plan), to put my current status into perspective for any of you following along. SEE THE VIDEO BELOW. For those of you who haven’t seen me in many years, hold the tears, because I’m exactly where I need to be to stop this train wreck. It’s all good. God, does my butt look big??!!
Friday night was the first of four nights of two subcutaneous injections, consisting of G-CSF (Filgrastim) at 10 mkg per kilo of body weight…One at 11:00 p.m. and one at 3:00 a.m. I experienced absolutely no side effects. These injections precipitate above-normal production of stem cells that will flow over into the blood stream and will allow for extraction though a peripheral vein (jugular or arm). My veins have been assessed, and they will be able to utilize an arm vein. Whew!! These injections are very quick and the pain does not linger long at all.
SATURDAY, MAY 4TH
I continued with my 11:00 a.m. runs of Solumedrol that lasted approximately 2.5 hours. During those first two days, I gained about 4 lbs., my face grew puffy and my hands began to swell a bit. I had a meeting with Dr. Fedorenko to discuss the plan for the week, and it was at that point that he divulged to me that given my currently EDSS (disability scale), the history of my MS, and what he currently visually sees of my level of disability, that it is very likely that I would be confined to a wheelchair within 3 years! Gut check!! Suddenly, any concerns I had about any discomfort that I may endure over the next few weeks, seemed to fade away. That evening, I had my second pair of stimulation injections, with no side effects, whatsoever.
SUNDAY, MAY 5TH
An uneventful day with my 11:00 a.m. Solumedrol run and then, a day of rest. Yea, right! I was freaking out because I hadn’t had any internet access for the past two days. It was weighing heavily on my mind. If pressed, could I make it through this experience with no outside communication? Yes, but, it certainly would make the ride a lot more lonely, and I had so been hoping to share every detail with prospective HSCTrs around the globe. I topped off the evening with two more stim shots, which brought my total to six of eight. Still no side effects.
MONDAY, MAY 6TH
At about 9:30 a.m. this morning, I was taken by Dr. Fedorenko to take my “breathing” tests. Also known in the U.S. as pulmonary tests. He said that these tests are not a deciding factor as to whether you are accepted or not for HSCT, but, that they need the results so that they can make accurate assessments later in the treatment, when are administering drugs that are processed through the lungs.
We then moved all of my belongings to the 3rd floor, where I will reside for the remainder of my stay. Two nurses from the 2nd floor escorted me up with my luggage and blew kisses to me as they left. They took incredibly good care of me…each and every one of them. They may be traditional with their glass IV bottles and old-school gauze-wrapping techniques, but they know exactly what they are doing and take great care to be the best they can be.
My new room is an aseptic room that is equipped with air filters, tap water filters, and a corridor that leads to my room (they refer to it as your “box”). There is a door between the corridor and the room, that during your isolation period will be closed, as well as the outside door at the end of the corridor. The room is small but ample and provides me with space to eat, store my electronics gadgets, and stash of food and clothes, for the time being. In the corridor, there is a refrigerator and microwave. The bathroom is much like mine on the 2nd floor, but a bit smaller. SEE PICS BELOW. I’m happy to say that they were able to finally get my Wi-fi back in check and I can once again monitor every sneeze, hiccup, burp and yawn that takes place from here to Mumbai. I had my morning run of Solumedrol in my new digs, with minimal, typical, rib cage spasms. But, I wanted to note, that to date, I have required NO pain meds at all. Suck it up people! ha ha I’d better stop getting all cocky. Next thing you know I’ll be screaming “Narcotics!!!”. LOL
Tomorrow is a huge day for me. Between 8:00-8:30 a.m. (Midnight EST) I will be having my apheresis (stem cell collection). It is a 5-hour experience and 50% of people who undergo it will be able to have extracted the appropriate amount of stem cells to proceed with the transplant. The other 50% will need an extra day of extraction in order to meet the required goals. Here’s to praying for big numbers tomorrow. If able, I plan on doing a blog post tomorrow that details the experience. I have a “big gun” of a motivational trick up my sleeve to get me through the process, and I would love to share it with you. This is where things start to heat up, folks. Are you up for it? I am.
Oh Brooke, you are my hero. I am loving your updates and did miss them over the weekend. So glad to hear all is on schedule and you are “heading into the first turn” (can you tell the Kentucky Derby was just on Saturday?). We are all well in the “Creek and your family here is praying for all treatments as you go along.
Go get em, Brooke! Love reading your blogs and I have high hopes for you! You are in my prayers!
Брук, Praying that they were able to get the stem cells they needed! May the Lord be with you during this procedure! Christ is Risen!
You go girl!!
Thanks for being soooooooo courageous! God Bless You and your family as you approach your new birthday!! Peace be with you and your medical team Brooke. Now kick this things butt!!!
Wishing you the best with this ( and all ) parts of your treatment Brooke. Go get em!!!
Many prayers are with you for a vast recovery of your stem cells. Expect great things. We all know your mighty strength, Kick MS in the butt!
thank you for sharing this experience with others that may have to go through it.