Day +334//11 Months

Last year at this time I was making my final preparations before I left for Mexico, making check list after check list. We tore out old carpet in our bedroom and put down hardwood, we scheduled air duct cleaning, we fixed a hole in our roof that we had just discovered was the cause of mold in our master bathroom, we were getting ready for another year of preschool and figuring out last-minute details of how we would navigate this month of me being out of the country and then the uncertainty of what my return home would be like. It was a crazy time! I still have moments where I can’t help but laugh and say ,”I can’t believe I went to Mexico!” At the time I had so many people tell me they didn’t know how I could do it, leaving my family for a month and traveling alone to a foreign country to get a medical treatment that the FDA didn’t approve of. It was an easy decision for me because I had no better option and I didn’t like the idea of waiting around to see how fast and how far my MS would progress. It was one of the best decisions I’ve ever made and it was easy to make it, but now looking back on it, I’m still in shock that I actually did it and that I’m almost a year away from where I started.

I’ve been talking with more and more people who are struggling with the decision of whether or not they should pursue this treatment and I can’t stress enough the importance of getting this done as soon as you can. Is it easy? No, but it is so worth it. I was on the phone with a lady from Florida who is struggling to find any health professional who will help her upon her return home from Mexico, which is such a shame and so discouraging. She and I both agreed that it was better to get this done and risk the “I told you so” than to not do it and risk asking yourself “what if” for the rest of your life. I hope and pray that this treatment gets approved soon so that way it can become a reality for the millions of people who are struggling and watching their lives waste away.

I have experienced a couple of things in this recovery worth sharing for the sake of transparency in my HSCT journey: weight gain and anxiety. Both of these things have been a struggle for me for years but have definitely gotten worse since my return from Mexico. Could it be from HSCT? Sure. Could it be normal for me and not caused from HSCT? Yes, but it is worth sharing since I’ve seen an increase and struggle.
The trouble with having and autoimmune disease and then going through something like this is that it is so easy to blame everything on MS or HSCT. I gained 20 pounds in 9 months and many HSCT veterans blame weight gain on the treatment with all of the steroids, chemotherapy, and months of antibiotics and antivirals. I think my struggle had a lot to do with my recovery once I returned home. I slept A LOT when I got home, and that is what my body needed to heal and recover. I ate a lot of processed foods for months to avoid food poisoning. I really missed fresh fruit and vegetables, but it wasn’t worth the risk for me at the time. Now that I’m in a safer place in my recovery and my immune system is getting stronger, I’ve started dieting again (Whole30) and I’m back to eating fresh delicious foods. It feels great and I’ve noticed some weight loss. So I don’t think that the treatment helped at all with my weight issues, and my gut has some serious healing to do after all of the strong medications, but that doesn’t mean that I have to just take that excuse and not do anything about it.
As for the anxiety, I do absolutely think that it has gotten worse for me since having HSCT. I’ve done a lot of reading about anxiety getting worse after recovering from a serious illness or injury, and it makes sense. Any time I get a weird headache or a tingle in my fingers or ringing in my ears, I immediately think, “Oh my gosh. My MS is back. I’m a non-responder to HSCT and I wasted so much time and money. I could have spent this time on the disease modifying drugs that all of the neurologists push on their patients.” I listened to a podcast recently about a guy who complained of a headache and hours later died of a brain aneurysm so now that is where my brain goes any time I get a headache. My heart starts to race, my palms get sweaty, I can’t focus on anything other than this ‘impending doom’ feeling. I went for a bike ride this week with my daughter that we’ve made plenty of times last year, but this time I had to stop after 5 miles (out of 12) and have my father-in-law come pick us up on the trail because I had tunnel vision and I thought I was going to pass out. I was sure that it was “an MS thing,” but I recovered way too fast for it to be an MS attack and then I remembered that this diet I’ve been on completely cuts carbs and sugars and I likely didn’t drink enough water. Luckily I’ve been on medication for the past 5 years for depression and anxiety, and that along with CBD oil helps me keep myself in check, but it is a struggle some days to keep my mind from going to these dark scary places.

Next week I have an appointment with my hematologist to check my blood levels and see how I am doing. I haven’t had an appointment with this doctor for a few months and it will be good to see where I’m at. In the beginning of September I have me second appointment with my neurologist just to check in. I was thinking that I would get another MRI before I saw her but she suggested waiting another 6 months so that way I’ll have a year in between my two scans since I got my most recent ones done in March. She did say that my last scans were stable with my brain showing one lesion that was healing or less visible and that my spine was normal. That was good to hear since I never received the radiologists report from my last scans instead of just assuming that no news was good news.
I had my last round of vaccines and I handled them like a champ. My 4-year-old daughter came along and was so proud that I didn’t cry. She said that now she knows that she doesn’t need to cry next time she gets shots…I’ll have to remind her of this in a couple of weeks when she goes in for her 5 year well-child visit 🙂 Now I’m not due for any more vaccines until February 2019. I’m so thankful that I’ve found and built a strong medical team around me because so many people considering HSCT can’t find anyone who will support their decision to do this and I have a hematologist, neurologist, and a general practitioner who have all been total life savers in this process.

That’s all I can think of to share for now, so I’m off to enjoy one of the last days of summer vacation.

This picture was taken after I was stopped in the grocery store by an older lady who asked what number perm I had. When I told her it wasn’t a perm she asked if she could take a picture to show the lady in her nursing home who does everyone’s perms. These chemo curls are setting a trend in nursing home perms! Too funny.

Until next month (which will be my stemmie birthday!!!!!!), adios!