Well, it’s been two weeks and two days since I stepped foot back onto U.S soil. I quickly found myself dealing with some serious chemo fatigue coupled with the residual effects of sleep deprivation. The kind of fatigue where you fall asleep in the middle of a full-on conversation…embarrassing! My plan was to take a week off from blogging and to jump back on to let you all know how things were going. Three days into that plan, when passing my husband in the hallway, he says “Do you have a rash?” I’m like “What do you mean?”. I was wearing a t-shirt and he said “It looks like you have a rash on your neck.”. I race into the bathroom, and, sure enough, I do appear to have a rash just peeking out over the collar of my t-shirt. It looks like heat rash and it doesn’t itch, so, I wasn’t panicking. I figured I’d assess the situation further, and lift up my shirt in front of the bathroom mirror only to find that I have a rash from my neck down to my waist and from my neck to lower back. WHAT??!!! This was Monday the 10th. Late Monday, I shoot an e-mail off to Dr. Fedorenko in Moscow. He seems to think that it could be a food allergy, but, I’ve never had any food allergies, nor had I eaten anything out of the ordinary since my return. He recommends a short course of steroids (my favorite…NOT!) and recommends that I see my PCP. I call my PCP on Tuesday. They can’t see me until Thursday morning. No problem, except for the fact that, by Thursday morning, I had a low-grade fever, chills, and the rash is turning into something that looks more like hives. I continue to try to nail down what food or environmental item I may have been exposed to, all the while, my strength, which is already compromised due to being in an 11 x 12 room for five weeks continues to deteriorate. I can survive a stem cell transplant like a champ, but, throw a fever at me and I’m down for the count! REALLY?!! By Wednesday night, I had been living on the couch for almost three days wondering what the heck have I done to myself?!! I had this fabulous run with no complications, no pain and none of the typical HSCT issues that could arise…NONE! My HSCT experience was nearly flawless. I was seriously considering submitting my photo to all of the medical dictionaries, under the entry of HSCT Perfection! Was all of that going to have to go up in smoke? Wahhhhhhh!!! I finally get to see my PCP on Thursday morning. It is quickly evident to him that I was shaking like a leaf, my blood pressure was low (as usual!), my heart rate was 138, my fever was 101.something, my appetite was gone, and the now “itching rash” had spread as low as my mid-thigh. We go over every drug that I was currently taking. There were only two…Bactrim (for bacterial infections) and Acyclovir (for viral infections), oh, and Tylenol for the fever. The Bactrim and Acyclovir were both given to me upon my release from the hospital and I had been taking them from day one that my transplant regime began. They are both standard HSCT drugs. Bottom line was that I had been taking them for a month, already. My PCP, took the rash very seriously, and quickly nailed down, after ruling out a rash from Rituximab use, and a rash from Engraftment Syndrome, that it was most likely due to prolonged use of Bactrim, which he said was common. He pulled the Bactrim out of the lineup and replaced it with once-a-day Levoquin, kept the Acyclovir, put me on a two-week course of Prednisone, and sent me for STAT bloodwork. He called me that night (after hours…kudos!) to say that all of my bloodwork (platelets, WBC, hemoglobin, etc.) were all completely normal. He did say that my liver function was a smidge high, but that was to be expected following chemo. I immediately, sent an e-mail back to Dr. Fedorenko, who e-mailed back right away to say that my PCP had done exactly what he would have done. What a relief! We had picked up the meds on the way home and I started them ASAP. By the next day (Friday) at 1:00 p.m., I was not only able to make it off the couch, but my fever was completely gone, I did four loads of laundry, cleaned, dusted, swept, and ate like I hadn’t eaten in weeks. WOW, WOW and, WOW! I had a followup appointment with my PCP on Monday and he was very pleased with my results. I felt so good on that day, that I convinced mom to stop by Walmart with me (I hadn’t been out in public since my return home) and then I talked her into letting me drive home from there (about 15 miles). I had already been given permission to drive before I left Russia, but, my dizziness and sickness had kept me from doing so. I felt like I was free. I have been driving ever since and even made a couple of trips to Altoona (about 30 miles away). It was during these independent jaunts, that I discovered that I really didn’t need my trekking pole for my balance as much. Normally, I would wear my foot brace (which I did), and I would have my trekking pole for balance and stability while lifting my hip which lifts my foot to clear the ground. This trip, each time I would walk from the car to a store, I would take my trekking pole, but, I found mysef carrying it in the air in my hand. Pretty cool stuff! In addition, although I still use the brace because my leg and foot are weak, in general, from being cooped up with a lack of activity for so long, the brace and shoe seem to try to slip off of my foot as my foot is trying to very gently turn itself into its correct (forward) position. This is all within the past few days, so I’m still letting it gel, but it’s so fun. I hadn’t divulged this informaton to my husband, because, when you tell people that things are getting better, then they stare every time you walk, over-analyze and don’t see all of the changes that you are feeling and may wonder why you’re not skipping down the street. Trust me, there will be NO skipping in my immediate future. However, last night, he asked if I wanted to go out to dinner and when we pulled in to the restaurant, normally, I would have grabbed my trekking pole and his arm after he helped me out of the car. This time I said “Go ahead.” He said “Don’t you need your pole?” My reply, “Nope!” “Do you need my arm?”, he says. I respond, “Just don’t go too far, in case I do.” He stands back, watches me get out of the car unassisted, walk across the uneven parking lot, up onto the sidewalk, across a carpeted floor and to our booth, all without my trekking pole or his arm. I was totally testing myself and was petrified because I knew that I could be face-planting at any second, but, I DID IT without a single bobble. He was impressed and asked when I started doing that. I told him I had been practicing all week. He proceeds to tell me that he was going to have to give all of his friends an update, because the day before he was telling them all that I was still walking with my pole when I was in public. Then, today, we went grocery shopping and the shopping carts that I used to (8 weeks ago) have to hang onto for dear life in order to walk, I was able to gently place my hands on and just kind of tap along while I kept my balance and walked all on my own. It gave me that feeling that a baby must get when attempting their first steps and one parent releases them to walk across the floor to the other parent and they make it the entire way without stumbling and everybody cheers. Yep. That was me at the Creekside Inn last night. Nobody else in the restaurant had any idea that they were witnessing a miracle, but, my husband certainly did seemed impressed. Hurray for HSCT!! Whoop, whoop!!
I will continue to take my Prednisone for its course (love the instant 8 extra pounds of facial/abdominal weight within 3 days!) and I finished my Levoquin today. My appointment with my hematologist in Pittsburgh will be in two weeks and I will begin my physical therapy, which my PCP was kind enough to prescribe, within the next three weeks or so. I consider myself just scratching the surface of what is normally up to two years of initial improvement. And, let’s not forget, at this moment, my MS has been completely shut down. There will be no more trips to the infusion center for the MS drug which made me feel worse and no more years of painful injections.
I have spent the last week doing what I had planned on doing my first week home. Unpacking my luggage, rearranging the house, doing tons more laundry, cooking, and, of course, resting in between. You might be wondering how my other MS symptoms have been. As expected, and for an average of 3-6 months following HSCT, I do and may continue to experience a worsening of some symptoms. Not that a fever helped the situation, but, my fingertips are more numb than usual and the dexterity in my right hand is less than stellar. Patience is an HSCTrs biggest challenge. I may have mentioned that “patience” is at the top of my “Brooke Sucks at These” list. lol But, I’ll get over it…in time. Always at the top of my “To Do” list will be paying it forward in the form of shouting it to the mountaintops about HSCT and its benefits. There’s no need for MSrs like me to suffer any longer than they have to. Why not use my big mouth to make that happen?
I can’t thank you all enough for all of the private messages and e-mails asking how I’m doing. I think this post pretty much spells it all out. I will, of course, continue to blog as events (good, bad and ugly) unfold. However, I will not be able to feed the addiction that I’ve since been informed of that took place every morning for the coffee/tea crowd while I was blogging from Russia. I will be setting out on new, recovery-related adventures, as well as watching the lives of fellow HSCTrs progress as they start to make their own way to Moscow. One of my HSCT sisters begins her treatment tomorrow, and there will be many more to follow within the next year. I am so anxious for their life stories to be re-written, as well. What a gift!
In the meantime, peace, love and recovery…from the Cove!
Thanks so much for the update.
You are awesome!! 🙂
I too have ms hope u continue to get better
You may want to have your PCP add OT (occupational therapy) to your order. They can help you with your hand and fine motor issues and performing daily tasks more easily. So good to hear everything went to well with your treatment. It gives us all suffering with MS hope!
My dear friend Vicki has shared your blog with me and I can’t tell you enough of the inspiration you are to everyone who reads your blog. May God continue to give you courage and hope during your journey>
Life Is Good….Congratulations!!!