Doctors say that after 2 years your immune system is fully back to normal. NORMAL! That seems to be the theme of this recovery for me. When people ask how I’m feeling I always say “good! I feel so normal!” I wish I could go back in time 4 years ago and tell my newly diagnosed self that it’s all going to be okay and that I will feel normal again.
Just like Multiple Sclerosis is different for everyone, so is the way everyone handles HSCT and recovery. I lucked out and breezed through my month in Mexico and I feel very fortunate that my recovery these past 2 years has been really quite uneventful. It is NOT that way for the majority of people who undergo this treatment but I am happy to report that for me, it has definitely been more of a mental rollercoaster than a physical one.
Anxiety is my biggest hurdle since my return from Mexico. Anxiety that I’ll get sick with some little illness that will put me back into neutropenia and kill me. Anxiety that maybe the treatment didn’t work. Anxiety that my MS will flare and be worse than before. Anxiety that my daughter will get this stupid disease. So. Much. Needless. Anxiety.
6 months ago I met with my neurologist and I told her all of my concerns and she highly recommended that I see a psychiatrist and go through cognitive behavioral therapy to retrain my brain to not go right to worst case scenarios whenever I feel a little off. I agreed that this was probably a good idea but that I think I would have a hard time not going to the bad ‘what if’s. It is so easy for someone who hasn’t gotten a diagnosis like MS to say “just be positive! You’re going to be okay! Your MS isn’t going to come back!” And I believe those things, I really do. But I’m also quick to be realistic in the knowledge that it could come back. Getting wrapped up in the negative thoughts can become all-consuming and do me no good but sometimes it’s just hard to get out of my head. I have yet to seek professional help with this though because…well…I’m stubborn and have a hard time asking for help and I don’t know if I believe that I can retrain my brain to not get scared when old symptoms pop up. It can’t hurt to talk to a professional, I know. I just have to do it.
I say all of this because I wish I would have known this side of recovery before I went through this, just to prepare myself. I heard all about other downsides of recovery but nobody really talks about the mental toll it takes on you to go against the normal treatment options and then be in somewhat of a state of isolation for months to stay safe from illnesses and food borne diseases once treatment is over. It’s tough! And so completely worth it.
I can’t believe that 2 years ago I sat in a chilly room with my incredible caregiver by my side and I received my stem cells back from the doctors in Mexico that jumpstarted my recovery and started my new life. I can’t believe it’s been 2 years since I sat on the rooftop terrace and had my head shaved and said goodbye to my long straight blonde hair. I can’t believe that I wished so hard for chemo curls!! Be careful what you wish for! 😉
What an amazing journey this has been for me. I’ve gotten the incredible opportunity to guide people towards this amazing treatment and watched them go through it and succeed with amazing strength and perseverance. It’s not easy, but so worth it!!
I have an appointment on October 7 with my neurologist for a checkup and we will hopefully review MRI results to see how I’m doing behind the scenes. Physically I’m feeling great. Mentally I’m doing pretty good. We just have to see how dormant this invisible disease is staying. Like cancer recovery, once you make it 5 years, you’re considered in the clear. With HSCT the goal is to make it to 5 years with no new or worsening symptoms and then studies show you’re pretty much in the clear.
I’ll update you all after my neurologist appointment in October.
As always, thank you for walking alongside of me though all of this!!
If you or someone you know are considering HSCT, please feel free to ask me any questions! It’s an honor to be on this side of recovery and I want everyone to be able to experience this.
Adios!!
Adios, MS! 