It has been quite a while since I posted (4 1/2 months or so), because there really hasn’t been much to say. I’ve been feeling great and living my life. I’m still avoiding certain activities, such as lawn work due to risk of infection from spores in the soil, and I practice good hand hygiene. (Bonus of HSCT: I’ve convinced Anji that we need a lawn service for this upcoming summer. No mowing in 100 degree heat. Chris for the win!).
This was a particularly rough flu season, and since my wife is a pediatrician, she had a lot of exposures to flu this year. During the peak of the season, she would shower and change clothes immediately when she got home from work to protect me from the flu. As we get through March, it looks like we dodged that bullet this year.
Day to day with our daughter, not much changed for me after HSCT. She went to preschool four days a week for 2 months to give me time to rest, but as of December we were back to just two days a week of school. We avoided crowded indoor places, but otherwise we had our normal daily routine. Luckily, Brynn hasn’t been sick all winter, so we didn’t have to implement our back-up plan for child care (her grandparents). Now that its spring, I’m coaching Brynn’s U5 soccer team and we are enjoying the warm Texas weather.
The most difficult part at this stage is maintaining my own awareness that I am still only 6 months out from HSCT. I’m not scared of things right now, I just try to be cognizant of making good choices. Since the new year, we are back to eating out, although I still avoid raw foods (salad, garnishes, sushi) and I’m selective of the restaurants, but we are living our life. We did save a lot of money when we weren’t eating out!
About a month ago, I had my third set of blood counts done by my hematologist. I didn’t have an appointment with the doctor, just lab work. The feedback I received was that the counts are improving as expected and I’ll see him for what is likely my last visit in May.
As we mentioned in past blog posts, our plan has been to get a new “baseline” brain MRI at about six months post treatment. The HSCT process didn’t filter out antibodies in my blood, so HSCT could be successful and some of my “MS antibodies” could still circulate for several months after treatment and cause damage. Also, my last MRI was 2 months prior to treatment while I was off my MS medication (Tecfidera), so it is possible that although I had no new symptoms, there was still damage done during that period. We discussed all this with Dr Elias at Monterrey and he suggested this 6 month MRI should be my baseline. If I develop new MS lesions from this baseline on future MRI’s, then we could conclude that the HSCT hasn’t been successful. The great news from this MRI is that I had no new lesions! Basically, my MRI’s haven’t changed at all since my initial diagnosis in November 2015.
More importantly than what my MRI’s show, my symptoms of MS have improved 100%. My main symptoms were facial tingling, bladder urgency sensations, ankle pain, heat intolerance and fatigue. I’ve occasionally had some mild fatigue, but I attribute that more to recovering from chemo than my MS. It just feels different. A different kind of fatigue. Otherwise, the other symptoms have completely resolved.
If I have any changes (good or bad) in the future then I’ll definitely update this blog. But as of right now, I feel very lucky to have had HSCT in the first place and for my recovery to have been so smooth.