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Treatment Blog

Jumped the gun (Day +3)

I actually jumped the gun a bit about declaring my immune system gone as of yesterday. Today we had our blood tested, then met with a doctor. Dr. Priesca told me that I will hit nadir somewhere between Friday and Sunday. I’ll be tested again on Friday.

Another girl at the clinic also reported, very cautiously and superstitiously, that she was starting to feel some benefits, but she didn’t want to jump the gun and jinx anything.

I told Dr. Priesca that I thought I was already experiencing less pain in some areas, and he responded that some patients do start to report recovery of symptoms as early as this point in the procedure. Wow! Any chemo suffering endured is clearly worth this.

While in the waiting room, I was engaged in a conversation among several patients and caregivers on my left. This meant turning my head to the left and talking. Arms and neck and facial expressions needed to me more animated than usual since we all had mouths hidden by surgical masks (as is required by everyone whenever outside your apartment at this stage in the game).

Head turned to the left with animated communication…that would have been recipe for disaster: pain across the back, which would have quickly descended into a pain-crises, stabbing pain in my left shoulder.

Instead, there was nothing. I was just a normal person.

In a reflexive motion learned from years of subconscious training, I turned my body towards the group to lessen the angle of my head and minimize the would-be pain. And in another subconscious maneuver, I crossed my left leg over the right to increase my turn radius. Wait, did I just cross my left leg over my right without the assistance of my hand lifting it? It wasn’t terribly easy to do without assistance, but that’s another improvement!

Okay. Keep cool. Don’t get too excited. No bad omens. Maybe it’s a fluke or something. Keep it on the down-low. Shh.

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Immune System Gone (Day +2)

Sorry it’s been a while since my last post. The most recent round of chemo (four and five days ago) really knocked me down — apparently harder than anyone else in my group. While most people bounced back quickly, I spent three days feeling nauseous and hungover. I’ve always been sensitive to certain medications, so I guess this is just another one to add to the list.

Two days ago was Day Zero — our new “birthday.” That’s when we all received our stem cells back and had our catheters removed. There was even a big “Happy Birthday” sign in the room. Everyone else seemed upbeat and energized, but I was still dragging. Out of the eight of us, I only heard one other person mention side effects from the second round of chemo.

This morning things finally turned around. I was able to eat again, which seemed to break the nausea cycle, and I’m feeling so much better. Today also marks the point where my immune system is officially wiped clean — no memory of MS left in it! In theory, my body is now ready to rebuild without the disease.

And here’s the best part: I’m already noticing improvements. The stabbing pain that used to hit whenever my shoulder and neck were in motion — during conversations, while driving, or even minor movements — is now gone. In its place is just a faint, nervous sensation. I can still feel the trigger, but the pain itself doesn’t arrive. That one symptom was at the top of my wish list, and to see it fading already feels incredible. Honestly, even if nothing else improves, and this change holds, the transplant is already a success in my book.

Of course, recovery usually takes up to two years, and I’m hopeful for even more improvements — maybe even the chance to step away from MS and pain medications altogether. For now, though, I’m simply grateful. The journey is worth it.

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One million stem cells per kilo (Day -2)

Here I am, sitting in the apheresis room with all five of us in Group 1. We are each hooked up to our own apheresis machine via the catheters we had inserted several days ago. The catheters go right into the jugular vein.

Being a mechanical engineer, I can tell you that these are the coolest machines I have ever seen in my life. I bet they cost a pretty penny. When I was here in February, I saw only one machine, and now the clinic has five. This room was the old chemo room. They’re growing.

Catheter placement. You can see some atrophy in my left shoulder, which I hope to resolve after the whole procedure.Catheter placement. You can see some atrophy in my left shoulder, which I hope to resolve after the whole procedure.Dr. Priesca is running the show in this room with two other doctors. Dr. Ruiz-Arguello came by to shake everyone’s hand and chat for a moment with each of us about our medical condition. He’s a very friendly and jolly man.

Some people experience bone pain as a result of the mobilization chemical, which we’ve been receiving twice-daily for the last week. Mine has been only a persistent headache over the last couple of days, which I was just told was not only typical, but is actually bone pain. A couple of days ago, I woke with a fever. All the above is normal and easily managed with Tylenol. There have been varying levels of discomfort throughout the group, some experiencing none.

The goal here right now is to collect one million stem cells per kilo of body weight. I’m looking for about 165 million. I’ll be hooked up to the machine for a few hours; then they will take the collection bag to the lab and measure it. If I reach my goal, then I go right to chemotherapy. If I miss it, then I must come back tomorrow and try again. In that case, my Day Zero will be delayed.

This is my “stemmie” collection bag This is my “stemmie” collection bag This next, two-day round of chemo will be strong enough to destroy my immune system. It’s sure to make me a little unsettled, but that’s what I’m here for. A few days after that, theoretically, the MS will be gone from my body! Yay!! Then I’m on to recovery.

UPDATE:

Dr. Ruiz just came in to tell me that I harvested 175 million stemmies!

Onto chemo now.

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The “Mexican Method” (Day -4)

Dr. Guillermo Ruíz-Argüelles has published several papers on the National Institute of Health (nih.gov) concerning his particular protocol used for hematopoietic stem cell transplant (HSCT). Called, The Mexican Method, this protocol is different from Dr. Burt’s (Northwestern University) ongoing, Stage 3, worldwide clinical trial. (The Ruiz clinic has over 600 published papers, many on the NIH.)

Since the agenda paperwork I received for my treatment did not include a timeline graphic, I decided to make one, so I don’t have to keep explaining to friends and family where I am in the process. I’m also very visually oriented.

I’m currently at Day -4, so there’s going to be a lot of action coming up soon. Right now there’s just a lot of shots and pills. Below is a timeline I created of the Mexican Method.

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