Post Mexico: 1 Week

Oct 1, 2019 is officially my New Stem Cell Birthday! Today is only 1 week after completing the 28 Day Treatment in Mexico and returning “home.”

I have had a little time to process what all transpired over those 28 days, and thought I would share MY experience with those who might be considering this treatment, or have a friend or family member with MS. NOTE: just as there are no two MS patients the same, there will be no two HSCT experiences that are the same. This is ME.

These are my thoughts TODAY (and I hold tight to the right to change my mind at anytime!):

Do I see any improvements with my MS? YES I do! They mysteriously come and go, but it is very exciting to think that my body is trying to wake up! One thing I want to mention first is that while I was in Mexico I had a new MS symptom arise, The MS Hug. Still dealing with that but very mild.

My improvements: I stopped taking the ‘Walking Pill’ 4 weeks ago and can lift my right leg higher than when I was taking it. Less spasticity in legs. Drop foot is improving. Periods of less fatigue (however, my blood counts are still not at 100%). I did have one very exciting day early on in Mexico where I JOGGED, about 20 steps down the hall and back!! It briefly felt like I had my old legs back! If that is a tiny glimpse of my future, I am beyond thrilled!!

How am I doing 1 week after leaving Mexico? I still have low blood counts that has caused extreme fatigue. Each day they are going up, so each day is a little better. Before treatment I was a 4.5 or 5 on the EDDS (disability) scale. Today, I would say I am still the same. For those that don’t know me, before treatment I used no assistance in my home, but had progressed to needing a cane, trekking poles (for balance) or a wheelie walker for big events such as a Mets game. (I mean Astro’s!!!) During treatment, I needed a wheelchair. Chemo takes A LOT out of you! Today, I used my trekking poles to get around the house and to the car, and a wheelie walker for outings. I also just completed a Sitting Strong workout on The MS Gym. I know that building back my stamina is key and I am using extra precautions not to fall and have a set back. Do I want to do MORE? Yes, but trying to be SMART!

Was the treatment has bad or good as I anticipated? Yes and No! Sorry, this is a hard one. It went by fast, and I always felt I was receiving the best care with the quickest response time on the planet. Was it hard? Yes, sometimes is was tougher than I expected but I was never in a critical situation. I was at times more nauseated, fatigued, wiped out, or uncomfortable (used that 0-10 pain scale thing!) than I cared to be.

How did I make the decision to do HSCT? I won’t go into all the conversations I had with my husband (Mike), family and friends, but I can give you the steps I took to decide. You are not me, so do this your way.

First, as soon as I heard about HSCT I began reading everything I could find. I honed in on the Chicago trial and Mexico Cliníca Ruiz. Then, I discussed and prayed with my husband often for months. When we were ready, we added discussions with close friends and family. We got mixed comments as you can imagine. Then, I took it to my neurologist who was passionately opposed. (This is a big topic for another day.)

After plenty of fact and opinion gathering, Mike and I took a weekend away, just the two of us. We used this as a deadline for discussion. We would make a decision, and move toward it. If some new information arose, we would discuss it, once. Redecide, and move forward.

I didn’t qualify for Chicago, so Mexico was my place. They had only had 1 fatality in 700 patients. We had a real talk about that risk, and decision was made. The hope of a bright future (80% success rate of stopping MS progression, smaller but still worth noting chance of reduced disability in some patients that are responders), it was worth the risk. We booked treatment for Oct 2019. That was Feb 2, 2019.

That April, Cliníca Ruiz was holding an information conference in Houston. We decided to go and meet the main doctors in person. Get a gut check on our decision. At the end, Mike asked if I had any thoughts. This would usually lead to a day rambling of my thoughts. But my only comment was, can we get the treatment any sooner? We moved it up one month for Sept 14, 2019. (Being able to take our youngest son to college was a priority.)

We really didn’t discuss it much after that except to help friends and family know what was coming up. We didn’t ask opinions anymore. We explained and sent links to answer their questions. But then, something did happen. In July, Cliníc Ruiz reported the passing of a patient while in treatment. It shook us. That night, Mike and I had another visit to the ‘risk’ conversation. Again, we had peace, and didn’t discuss it again.

Cliníca Ruiz, Puebla or Monterrey location? Same protocol, same doctors, same Mayo Clinic education, same awards, same reputations. How to chose? In Monterrey, you cook your own food, in your own apartment. Mike should be a chef, so that was easy! And, chemo is administered in your own private room. I’m private, I liked that.

How did I prepare before the treatment? I committed to the Overcoming MS diet starting about 2 years ago, not perfectly, but as best I can. I exercise with a personal trainer 2x per week to keep my muscles strong, and do pilates once a week. The MS Gym is also in my rotation to be active every day. I go to a chiropractor once a week. I wanted to be in MY best physical shape before treatment.

Cost? Yes, this treatment is expensive. Insurance would not help. We had to pay cash in full, 2 months in advance. The treatment and care we received would be comparable to a private, exclusive treatment center for the rich and famous hidden in the Hollywood Hills that cost hundreds of thousands $$. We got more value for every penny than we ever thought was possible!!

My hair?? How was I about the whole gong bald thing? Anticipating the first short haircut, 3 weeks before we left for Mexico, was the hardest. Immediately, I was fine with it. Now, all shaved short (my hair did not all fall out), I feel it says “yes, I’ve been through something! And I am brave. Better not mess with me! Ha, kinda kidding. But no, I didn’t buy a wig and haven’t felt the need to cover my head yet. But, it’s not cold yet! Cute hats will be in my winter wardrobe until I get some hair!

What do I anticipate for my future? I’m hoping to be in the 80% that stops MS in its tracks!! Anything more, is a huge BONUS!!! They call the recovery period, up to 2 years, a ROLLER COASTER! That sounds like it will be filled with twists and turns! Some days will be worse than others. Some days may be worse than BEFORE the treatment. Not to be discouraged! It’s a slow process, we won’t rush to conclusions. We will be patient, positive and have faith that God is in control, no matter the results! I don’t know the name of my ride yet, but I hope it’s something like Gentle Giant or Sleepy Ride, with no minimum height limits!!

Would I do it again or recommend it to my dearest friend? YES! No hesitation! Do it as soon as you can after diagnosis!!

Last thoughts for today: Let as many friends and family in on your journey (no matter how private you are) to support you emotionally/spiritually along the way! Dear friends, you all have carried us and loved us and we are so grateful to have you with us on this ride!!