When a new chapter begins in someone’s MS treatment, suddenly it’s not hard to come up with blog content anymore. Suddenly one’s life is full of things to think about, research, talk about, schedule, plan and carry out. All of the sudden your mind has something to wrestle that isn’t the same old bag of excrement that its been wrestling with for the last several months. All of the sudden there are things to do again.
It’s hard not to have a sense of false serenity thinking this new treatment could be IT. I mean, when I think about it, each treatment I’ve signed on for was supposed to be IT. Tysabri could have given me a deadly brain virus but it was supposed to be IT, so I signed up willingly for a mind-numbingly frightening potential outcome (um, death?) for the outside chance that Tysabri would be IT. But Tysabri wasn’t IT at all.
Then Ocrevus was going to be IT.
I mean the Ocrevus hype had me pretty much preparing to become a cross country runner or perhaps a professional triathlete. The patients who could walk again, could talk again, could see again. The patients who could flat out live again gave me hope that felt like a gossamer slip of expensive silk I gazed through, that made the world look and feel more possible. Until it didn’t anymore. I just kept getting worse and wondering, why was this not a miracle for me? Why did this drug save so many people but not me? I was willing to keep slogging through it on that sheer filmy hope, but then it got to be too much for me.
How much slogging could a girl do before looking around for the next IT?
My official fourth dose of Ocrevus was scheduled for October 8. It is now canceled and I am awaiting the date for my first Lemtrada infusions. Round 1 will be five full days of outpatient infusions.
A friend of mine just went through it and I participated in her journey through social media, admittedly not quite like being there but the best I could manage. I was truly proud of how she powered through it. Eight to ten hours a day in the infusion room getting pumped full of a cocktail of benedryl, Solumedrol and Lemtrada is not for the faint of heart among us. Alexandra got through it with Snapchat filters, lollipops and friends along for the ride. I feel lucky that I will get to be a part of her post-Round 1 infusion experience so I can maybe get a glimpse of what this might be like when it happens to me – knowing full well that my experience could be completely different and nothing like Alexandra’s. Following her path is comforting to me nonetheless.
My turn with high-dose steroids that ended a week ago today left me even worse off than I was before. According to The Great Scott, my neurologist, “it happens.” It doesn’t happen often but sometimes after a hit of high-dose steroids patients experience a heavy symptom rebound apparently without rhyme or reason. “Don’t worry, Maribeth, it will only last a few days we can hope.” We can hope but we don’t much these days because here I am a week ago to the day of when the madness started and I’m still stumbling around my house holding on to walls and looking at flights of stairs like climbing actual mountains, feeling like my entire world will always consist of these rooms, these things, these pieces of furniture and these walls. I know it won’t, but once again, I struggle between hope and utter despair – not knowing which location feels quite right because neither extreme really does.
This past week while not being strong enough to manage my own in-home needs, I managed to do the following:
I talked to my Lemtrada One-to-One program nurse, by the name of Deb. She was so chatty and perky she instantly made me want to punch her in the face through the phone. She explained to me about the protocols I would follow. The anti-virals and other prep drugs I would need to take. The “listeria protocol” I am supposed to follow to help prevent food-born illness (illness of any kind while on this treatment is very bad and probably will involve trip(s) to the hospital). She explained cellulitus. She explained the blood work I would need to get monthly for at least the next five years. she told me I had to sing happy birth day to myself twice while washing my hands. She explained I would have to wash my hands a LOT. We talked thyroid issues, blood counts and other important things to be aware of. It felt like a lot but I just took notes and told myself this would all be fine. IT will be FINE.
I managed to get to last week’s list of quickly procured appointments that need to be accomplished before my drug can be approved. Here’s one thing I will tell you. My training and nearly 30 years of experience running complex marketing programs for big clients has come in very handy in this illness management process.
I make project plans. I have lists, apps and spread sheets. I have doctors and back-up doctors and insurance and HR on speed dial. I have to jump off important work calls when the elusive dermatologist I’ve been trying to bribe for an appointment happens to choose to call me back because of course that’s when he chooses to call me back. I know how to get shit done, escalate issues to higher authorities and I use my stern work voice to accomplish all of this. My stern work voice makes the impossible possible sometimes but other times it doesn’t matter how large and in charge I am, the health care system evil laughs in my face. That happens sometimes in my work life too, but all of the sudden it feels very different to me.
Work is hard? Whatever. Try something really hard and maybe you can impress me with that.
I managed to make the phone calls necessary from the lobby of Quest Diagnostics that were required to get my blood orders and my urinalysis order sent to one location instead of two because I wasn’t leaving that lobby until I knew I didn’t have to go to another location for another thing. I didn’t have steps in me. The fact that I got this accomplished was a bigger win than anything I could have accomplished in my real life under seemingly worse circumstances. I felt victorious. It felt as good as winning a giant new account at work. It might have felt better because I’m reminded more and more lately about how little I actually matter in that world I used to value above so many things.
Once I somehow got enough pee in the cup and the vials of blood were sucked out of me I had to drive north a few exits to get to a dermatologist who had time to see me this week. I took my mom along on the ride because I needed the moral support and maybe even the physical support that even my favorite rollator can’t provide. We joked that we felt like we were going on vacation not to some rando dermatologist’s office in a strip mall in Natrona Heights. My mom has become my shot gun, my driver and my helper. She’s 78. Let that soak in a minute.
Next week, I have a pap smear and a spinal MRI. I also have to get myself to TGS’s office because apparently there is more Lemtrada paperwork they didn’t have me fill out the first time. Shocker. Then we need to get official insurance approval and schedule the week long infusions. Easy peasy.
I know I don’t sound as excited as I am.
I am excited. I want this new drug to be IT so badly I can hardly see straight. I know it’s not a cure. I know it might not help a single symptom improve but it could help me from continuing to get worse and I’m telling myself that’s enough. I will get back into PT once it’s over. I will try to rebuild what the drug will take away – things like balance, strength and coordination. I will do all of it because it is my latest hope and I need to believe in it no matter what.
I will tell you that this day is not as bad as yesterday. I don’t feel as weak or as shaky. Maybe tomorrow I will actually feel up to taking a shower. Maybe Monday or Tuesday I will shuffle my weak ass into the office. Maybe outside world life will become more possible again – until the infusions begin and the outside world becomes a cesspool of germs and potential evils that I will need to avoid until my no-longer-functioning immune system regenerates itself. I feel like I need to get as much outside world life in before infusion week even if it involves moving so slow I seem not to be moving at all. I need to squeeze some outside in before inside becomes my life again for a while.
Who am I kidding? Dragging myself to the MRI location and the different pap smear location will probably exhaust me to the degree that outside world life could mean inside other Allegheny Health Network facilities but beggars can’t be choosers and I am most definitely the beggar in this scenario.
I’m telling myself that if this drug isn’t IT, there are still other things on the horizon that could be. There’s that crazy hopeful word I’ve been reading and hearing more about: Remyelination. I love the sound of that word!
Oh. I also decided to give myself something to look forward to for infusion week when it gets here. I’m going to listen to audio books. I know reading will be hard – concentration and focus are hard to maintain while being pumped full of scary drugs but I can surely listen. I’m making a list of the audio books I hope to get through. I’m actually excited about the idea of this. I get excited about books. That’s part of old me that will never change.
So the next journey has begun. Buckle up.
tinytearstoni
September 15, 2018 5:53 pmI am so praying this new treatment is IT!!!. You deserve it to be IT!!!!.
bethnigro0212@gmail.com
September 15, 2018 6:10 pmThank you so so much!! We all deserve something to be IT, right? This disease is freaking hard. ❤️
tinytearstoni
September 16, 2018 2:59 amYes we do!! And it truly is! I really dont know how we do it some days!. x
Maureen OBrien
September 15, 2018 6:32 pmI so admire your guts and strength. I pray that this treatment can be IT. You have endured so much already.
bethnigro0212@gmail.com
September 15, 2018 7:42 pmI’m hoping it’s the one, too, Mo. I hope you and David are well. <3
Maureen O’Brien
September 16, 2018 1:39 pmThanks for even remembering his name. His spirits are good but body not so. He is virtually housebound with a helper. Because he is so charming, he has many neighbors dropping in, including his mail person. She takes her 10 min break at his house late in the day. Very interesting gal. From India. He has his own personal mail person!
He hosts little afternoon soirées with wine cheese etc. he has a Harem.
I live almost an hour away and can only manage to get there weekly for a visit.
I Had one cataract surgery this past week and another coming up. It is all the pre-op stuff that takes the time.
David also has possible carpal tunnel syndrome surgery coming up. Not a terrible thing but just one more thing. He has broken his hip, his leg and wrist in the last 2 years. Not to mention multiple back and knee surgeries in the past. No, he was not a stunt man for Tv, only the cameraman.
Don’t even compare to your situation.
Did have a wonderful Labor Day weekend in Texas. My oldest grandchild got married. David of course unable to make the trip.
Thinking of you always. Xo
Mike Strasheim
September 15, 2018 9:56 pmHi Maribeth
This is Mike from Montana, I commented a couple months ago because me and Ocrevus were not friends at all and our situations sounded a lot alike. I have also cancelled my next round. I chose PT and diet as my recourse, my Neuro agreed at least for a while.
I will also be hoping and praying that this next treatment works for you, it takes a lot of willpower to try again right away with something different. These modern medicines really take a toll on our bodies. Take Care and good luck
bethnigro0212@gmail.com
September 16, 2018 7:55 amHey Mike! It’s a terrible thing to say in some ways but I’m a little bit happy that I’m not the only Ocrevus fail that I know. PT quickly became my favorite thing. I look forward to getting back to it once round 1 of Lemtrada is complete. I also never thought I’d say those words! I’m notoriously lazy. I wish all good things for you!!
Sandra Schneider
September 16, 2018 10:14 amHi Bethy,
I hope this is IT for you. Even if it is not EVERYTHING, if it helps at least one thing, it will be a win. You are way braver and less jaded than me. For me, sometimes just taking action is validation to myself that I matter. As for the steroids, when they worked for me, they tended to take a couple of weeks. There is still hope for improvement from the prednisone.
bethnigro0212@gmail.com
September 16, 2018 1:21 pmThanks so much for that perspective, Sandra. I also feel the same way about taking action. I need to do things that might help even if they don’t always help in obvious ways. I’m scared to death of this experience but there is also no way I’d ever rest not knowing if it could have helped me in some way. ❤️
coolncreative17
September 16, 2018 9:03 pmGood luck with the new treatment. Wishing you all the best!
bethnigro0212@gmail.com
September 16, 2018 10:03 pmThank you so much. 🙂
coolncreative17
September 16, 2018 10:05 pmAs always I keep everyone in my thoughts.
Sending you a virtual hug. XO.
Positively Alyssa
September 17, 2018 5:43 pmI am really hoping this will be the right treatment for you! You definitely deserve for things to work out for the best. You are a pretty amazing person and you have the strength not many people have! Lots of love to you sweetie!
bethnigro0212@gmail.com
September 17, 2018 10:55 pmThanks Alyssa! I truly hope so, too. ❤️
Positively Alyssa
September 18, 2018 3:17 pmI wish you could believe in yourself as much I as believe in you! You deserve to have things work in your favor!
bethnigro0212@gmail.com
September 19, 2018 1:24 pmI’m going to try harder, Alyssa, I promise. 🙂
Positively Alyssa
September 19, 2018 3:20 pmI think you are doing amazing! Try to not push yourself too hard and just know you are incredible!
bethnigro0212@gmail.com
September 19, 2018 4:26 pm🙂
Loraine Barrett
September 18, 2018 4:14 pmHi Beth, Im so glad I read your blog today. My daughter Emily started a different treatment today as her MRI showed new lesions. I have become increasingly bitter and wish it was me instead of her, she,s only 25 and such a good person. Ive had my fun. Ive had my babies, Im done with partying, all the things a young person should be doing. I know it sounds wicked but every time I see the local drug dealer around I think things like How come it’s not happening to someone like you? I used to believe in God but now Im not sure. After reading your blog I feel like I need to be more positive for Emily’s sake, I know Im not doing her any good by being sad all the time and I am going to try harder. Thanks for sharing your feelings with us, I so hope Lemtrada is the one for you Beth . Lots of love to you
bethnigro0212@gmail.com
September 19, 2018 1:23 pmI can’t imagine how hard it would be to watch your child go through this during what should be the prime of her life. I’m so sorry for that. I debate with myself all of the time what would be better – to be diagnosed when I was young and had more energy/enthusiasm/whatever to bring to this battle. Or to be diagnosed later i life, like I was at 48, when I’ve lived and enjoyed the crap out of my life up until that point and now I just feel instantly old and useless. I’ve decided there is really no good time for this terrible disease. I’m sure your daughter just appreciates your support and love. You have every right to be angry, sad and bitter. Please don’t be so hard on yourself. Lots of love back to you and your daughter! <3
Lauren Fioresi
October 5, 2018 7:39 amHey Beth! I hope you are doing well. Where are you now with regards to your treatment? When can you start? How are you feeling? I hope all is well and sending you good vibes!!
Lauren Fioresi
bethnigro0212@gmail.com
October 5, 2018 12:25 pmHey there! Thanks for checking in on me. I’ve been feeling kind of crappy getting through my latest relapse and waiting on dates for my Lemtrada. I’m trying to be patient! But that’s hard. I’m hoping to hear soon so I can get moving on this next journey while at the same time trying to stay positive. I appreciate and return all good vibes! ❤️
Maureen O’Brien
October 5, 2018 12:40 pmBeen thinking you must be having a rough time. On my mind always. Maureen
bethnigro0212@gmail.com
October 6, 2018 9:26 amThanks for that, Maureen. I am in kind of a rough patch but trying to hang in there as best I can. ❤️