One of the things that was explained to me early on in this “journey” was that although there isn’t a cure for Multiple Sclerosis, that there a number of “disease modifying drugs” (DMD) available for those with the disease, and that pharmaceutical companies are working on “new and improved” options every day. If one can slow the progress of the disease, then perhaps one can have SOME control over the long-term debilitating effects… but maybe not. It’s all just an unknown, and there in lies the biggest problem with this damn disease….you JUST DON’T KNOW!
Will today be a good day? Will the pain be bearable? Will my legs “work” today? How long do I have until I have to break out the cane again? WILL I end up in a wheelchair? Will my eyesight eventually become an issue? Will I have enough energy to just get through the day? Questions that are there, every day, and at least for me, questions that sometimes get in the way of the other regular thoughts and questions of life…”what time are the kid’s soccer games this weekend?” “Has everyone finished their homework tonight before the TV is turned on?” “Did I remember to sign the permission slip and put it on the counter?” “Did I pay the mortgage?” I sometimes wonder, if at least for me, the explanation that one’s memory can be compromised by the disease is because now that I have these added questions and worries running through my head (all the time) is there not enough “space” left to remember all the things that in the past, I remembered without a problem?
There are so many questions, and the truth is NO ONE has the answers. I feel EXTREMELY lucky that my condition has improved so drastically over the past 2.5 years (no CANE or Segway, only two flair-ups, and even the pain is better thanks to a new pain medication.) But that ISN’T because I am on a disease modifying drug (DMD). I tried, REALLY, I did. But Interferons did not curb the progression (as was determined by an MRI scan after ten months of sticking a large needle in my thigh once a week.) Next was Tysabri, which after only one infusion, seemed to be doing SOMETHING; I felt a bit better and had a bit more energy. BUT five minutes into the third infusion I went into anaphylactic shock. I don’t remember much from that day, other than thinking “who the hell decided to put an elephant on my chest?” I had the luck of developing antibody positivity (maybe I should consider taking up gambling.) The final attempt by my neurologist to find SOME disease modifying drug (DMD): she wrote a “compassionate care waiver” to my insurance company, laying out the reasons that they should agree to pay for Retuximab, a drug used to treat rheumatoid arthritis. At that time, there was clinical trial using it with MS patients, but I did not qualify to participate. Her waiver was approved and I received one infusion of that potential DMD, three years ago.
Since then I have not had a single MRI SCAN for MS. This led to MANY heated “discussions” with my doctors. It is in their nature, to want to KNOW. To see what is happening; has the disease progressed, do I have more lesions? BUT, my gut reaction was, I didn’t feel a need, didn’t think it was warranted to go through yet another expensive procedure, just to get a looksy. I felt strongly that until there was something else out there, a new DMD option for me to try, I didn’t want to succumb to another agonizing 2-3 hours in a tube, not moving or being able to scratch the damn itch on the side of my nose, that ALWAYS starts the minute they slide me into the machine, trying to stay calm and not freak out. But in early April of this year the FDA announced that Tecfidera was being released….and so that meant….and MRI SCAN to see how I was “doing.”
I have had the pleasure of a number of MRIs and have NEVER had a problem with claustrophobia… that is until this most recent visit. Although it was just like every other MRI, same tube like machine, with a technician talking to me over a speaker, music pumped-in to make the whole experience more “pleasurable” (as if that is going to help me FORGET that I am in a tube, instructed to NOT MOVE while loud beeps and tones and a lot of shaking and vibrations take place, maybe I can pretend I am in a nightclub!) And then….
I COMPLETELY LOST IT!!!! CERTIFIABLY WENT CUCKOO!!!!
Laying completely still for that long, the pain slowly began to increase, and although I tried everything; every meditation technique, breathing method, and thoughts of my “happy place,” NOTHING worked. The panic set in and started to grow; became all-consuming! I tried SO hard to just suck it up, to be OK and make it through. After all, I had managed to get through all the other ones, being the “model” patient. I didn’t want to fail; to not please the people on the other side of the glass, outside my little “bubble of magnetic forces.” But I couldn’t do it. I couldn’t be in there for even one more second…and so I did what I swore I would never do. I squeezed that little “bulb” they hand you just before they say goodbye and roll you into the tube. The “OH-SHIT” BUTTON. I had always held on to that little squishy thing, taking solace in the fact that it was there…that at any minute IF I needed help, magic would happen. They would stop the agonizing sounds and shakes and get me out. But also taking pride in the fact that I never squeezed it, that I was strong enough to get through it, without moving, or doing anything to fuck up the scan. And then…
I SQUEEZED. Over and over. I squeezed that stupid little thing like I have never squeezed anything before. (tempted to make some inappropriate sexual reference here, but will refrain since I AM trying to convey just how scared I was.) Guess what happened….NOTHING. The sounds kept going and the machine kept shaking. Complete and utter terror set in. I had to get out and no one was listening! Where the HELL were the people? All cheery and supportive as they left me in the tube; now NO WHERE to be found.
Finally, after what seemed like an eternity, but was probably more like a few seconds, the technician’s voice came through the speaker. (I have just realized that I left out one small but IMPORTANT detail that will help you understand how later I could see the humor in all of this….the radiology tech’s name was….POOPIE…I SHIT you not!!!! I didn’t believe it either and so when the doctor introduced her, I had to ask that he repeat it…three times. Which meant I had the doctor saying “poopie, poopie, poopie” just before my hell began.)
Poopie (who was Asian, and I am pretty sure I have the spelling wrong, but in order to let you know the phonetic pronunciation, figure this is the best spelling I can offer) let me down. She was supposed to be my savior. I frantically squeezed that “panic bulb” but she didn’t immediately roll me out, but rather said “yes, what is the problem?” I responded with “I NEED TO GET OUT, I CAN’T DO THIS.” She then calmly explained that there was only ten minutes left to the scan and told me to stay still. WAS SHE KIDDING! I didn’t have the ability to last even one more second, let along ten minutes. The pain that had now taken over my entire body was all I could think about. I had to move, to get out and stretch and try to make it stop. But good ole Poopie didn’t have my back! She was determined to finish, and told me “you lay still and we will be done soon.”
This is NOT what I wanted to hear, and I have to admit that in hindsight, I am embarrassed at what happened next, but I truly don’t think that I had control over my actions at that moment; I was SO panicked and in SO much pain, I did not have a thought for anyone or anything but me, and getting the HELL out of there. I screamed, at the top of my lungs…
“GET ME THE FUCK OUT OF HERE YOU BITCH!!!”
Certainly not one of my finer moments, and I can assure you that the awkwardness that ensued once they did roll me out and came back into the room is not something that I would choose to ever endure again. In my defense, the pain was real, and so was the panic. My breathing was labored and because I had been still for so long, my legs did not work at all. I was able to pull myself together, and allow then to put me back in the tube to complete the scan, but thoughts of what I had just done, and how incredibly scared and panicked I felt remained for a long time. Even writing about it now and remembering, sucks. I have never felt that “out of control” of myself and my actions, and given the choice, would NEVER want to “go” there again.
Wondering how in the world I will face the inevitable NEXT MRI.
Now that you have suffered through reading about the experience, I can return to the fact that I have NOT been on any disease modifying drug (DMD) for three years, and have NOT had an MRI scan for MS to see if it has progressed. Waiting for those results was another moment of agony (having fun yet?) I found that sleeping the next two nights was difficult to non-existent. Wondering what would they find. Had it progressed immensely? Was it going to be bad news? I have always maintained that the NOT KNOWING for me is the hardest part. That what ever it is, I can deal with it, JUST TELL ME.
And then they did. The email that I had been waiting for from my doctor came.
AND THE RESULTS…NOTHING NEW….no new lesions, no progression, and no active lesions! Baring there being some miraculous intervention from God that made the disease just disappear, this is the BEST news that I could have hoped for! Let me repeat…..NOTHING NEW! Time to celebrate, or at least be thankful, although not sure what or who to thank. I DO maintain that the immense reduction in stress in my life has helped, and for me, this is proof that there might be some truth to that thought. Since I can not give credit to any drug (DMD) and nothing else significant has changed, I believe that stress could be a huge factor. There may not be much medical research to support this, but it is what I choose to believe.
The one “bad” thing that came about from this result, was to not have a clear and certain answer as to whether I should begin taking Tecfidera. My neurologist feels strongly that I should. Shawn agrees. I went through the process of being approved, both medically, and through my insurance company, and the first month’s supply arrived almost two weeks ago. It has been sitting on my bathroom counter since it arrived. I don’t know why I am having such a hard time deciding to take it. There isn’t a LOT to be worried about (no major side-effects and has been used to treat Psoriasis in Europe for over ten years) but there is obviously something that is making me hesitate. My goal for this week is figure out what that “something is” and get over it. I DO believe it would be in my best interest, that even though the odds were in my favor THIS time, that might not always be the case. So I will think, I will talk it through with Shawn and then take the next step and let people know how it goes….
TECFIDERA HERE I COME!