This title has been floating around in my mind for awhile. Just two weeks ago I was in an exam room at the UCI Clinical Research Park. I am currently enrolled in a trial for the remyelination drug elezanumab. Real quick, a little medical jargon and background on the drug elezanumab:
“Elezanumab is a fully humanized monocolonial antibody directed against repulsive guidance molecule A (RGMa). Elezanumab is a fully humanized monoclonal antibody . Studies in patients with multiple sclerosis (MS) demonstrate RGMa upregulation, which inhibits axonal growth and myelination, oligodendroglial regeneration and functional recovery after trauma or inflammation.”Adam Ziemann, Matthew Rosebraugh, Bruce Barger, Bruce Cree
So back to that exam room. My trial cooridinator was setting up my future appointments. We discussed the emptiness of our surroundings. Just two days before all classes at UCI and all UCs across California moved online and off campus. As of that moment the clinical trials were the only activity on that campus. Still, we set up my 10th infusion. I learned that Dr. Sy dropped out of the trial. (Possibly because he was recruited for another trial. I’ll go more into that speculation in a bit.) My neurologist, Dr. Courtney who is heading up the UCI branch of the trial is now also conducting the neurological evaluations. So in my head I was running that appointment. My friend, Damian Washington, told me about a cool app called abridge that records and transcribes your doctor appointments. So cool, right? So now you can just sit and listen to your doctor and have a real conversation while the app writes down the important stuff, and puts the really important stuff, like medications, in bold! So here I was, daydreaming about asking my favorite Dr. Courtney all my questions about the trial and being able to have it all recorded!
Flashback- I had asked Dr. Sy lots of questions. He gave me fascinating information about the tiny neuroprotective cells called microglea that regulate the immune response in our brain. They are responsible for cleaning up the old debris in the brain, old cell rubbish, and docotors and scientists used to think that that was all they did. But in 2012 it was discovered they do so much more than that. So elezanumab is targeting the microglea in some way but I cannot remember what exactly he said. too bad I didn’t have the app. By the way if you want to learn more about Microglea there is a wonderful book by Donna Jackson Nakazawa, The Angel and the Assasin: The Tiny Brain Cell That Changed The Course of Medicine.
So, my time into April was set up and it was going to be amazing. I was to be attending a seminar tomorrow in San Fransico. Today my mother would have been flying out and while she generously offered to watch the kids, tomorrow my husband who worked around his schedule was going to go with me to help me! I would have seen some many friends there, and it was going to be amazing! Then my best friend Dorothy was going to be getting married in April and my mom and I were to go to the wedding in Arizona. Then the MS Walk I wanted to participate in in Long Beach was scheduled for the next weekend. Sigh…
Now I’m at home with my kids and my husband and it is a different kind of wonderful. It is a lot. Usually my wonderful in laws are helping out with the kids whenever they can. Now circumstances are such that we can’t go see them. In California the Governer has ordered that people don’t congregate, except for the members of a single family home unit. We are flattening the curve while trying to keep our spirits robust. So there’s Facetime, there are Zoom conferences with the kids teachers, and I’m setting up Facetime playdates.
In a way my life isn’t so different than usual. As many of you may have already experienced self isolation. I’m used to mindful of washing hands to prevent infections, not going to as many social events, feeling pains of Mom guilt when you have to cancel a playdate your child so desperately wants. Symptoms of MS can be sudden and without warning, and F with the best of plans. So now I don’t have to feel so guilty about my kids not going out as much other kids in their classes. Now they have each other, and they are clinging to one another in a more harmonous way. They still fight, but they are treasuring each other’s company in a way that melts a mom’s heart.
I want so much for them. I am so lucky that my husband is home with me. We are weathering this storm as a family, as so many families across the world are. In one way it is so beautiful and inspiring. Families coming together to practice social distancing. We get a chance to form more meaningful relationships with the people we hold the most dear.
But there is also, death, illness, and uncertainty. Our lives have become frail over the span of a month. People in the wider community are feeling some of the uncertainties that people with MS and other Chronic conditions feel. I promise, Universe, when we asked for more understanding from our peers we did not mean this. 🙏🏼 That is a guilt that has bubbled up in my mind. We have cried out in a world that had deaf ears to our struggles for so many years. We have faced bodies that loose necessary functions, and the uncertainty of what else may be lost. Temporarily or perhaps forever? But we didn’t want our family members, and the community of our world to feel it like this. We didn’t want our most vunerable members to feel the brunt of it. We did not want a global epidemic. 😷 😣
So what do you do when you are facing a reality of hardship. For the world, your children, and a growing danger to yourself in the form of an unseeable foe?
“Don’t mourn, Organize.”Joe Hill, performed by Paul Robeson Joe Hill
My husband and I are organizing the house little by little. My husband started by making the garage more functional and less cluttered. I’m tackling the kids rooms bit by bit. I reorganized my pantry. One of the biggest unnecessary drains on my energy is the amount of energy I spend just looking for things I misplace. It brings stress, and an unneeded expenditure of energy. Where are my ingredients for dinner? Where is my tea strainer? “Mom! Where is ghostie? I cannot sleep without ghostie!”
My wonderful parents gifted me a walker so I can take this kids on short walks without worrying I’ll run out of energy. I am still walking around my neighborhood, maintaining a distance of at least six feet from everyone else. I can walk without a walker, and without a cane when I am feeling my absolute best. However, sometimes that absolute best don’t show herself for hours, days, or weeks at a time. So, to be able to go out of my house with the assurance that I will be able to get my children back home, I need the walker.
What are the things you always wanted to do, but the time was already so stretched? My time is stretched beyond reason, having to be a teacher to son that is almost four and a daughter who is almost 7. I have to keep them both entertained while teaching them separate lessons, and I’m still trying to figure that one out. Still there is more time. Normally we are in such a rush to get the kids fed, out the door, and in their class chairs I am exhausted by the time they are gone. I am not as productive with no one looking, even if its my kids. I mean I am constantly tired, my knees buckle randomly when I walk and almost take me down several times a week. It was my time to rest, and do one productive thing, and rest some more.
Now the mornings are more casual. I’m trying to work out better breakfasts for all of us cause for a while it was toast everymorning for my daughter, and cereal for my son cause it was the most sure thing to get them feed enough and off to school. This morning my daughter requested eggs like her Dadi (grandma) makes, so I scrambled up some eggs and they actually ate most of them.
We do Cosmic Kids Yoga in the morning. Doing it with them encourages my son to try some of the moves, he’s not that into it. My daughter is all about it, and I’m resting easier knowing they are loving yoga and excited to move. The other big bonus is that it gets me moving in the morning too, and doing yoga poses that I have muscle memory for, but they are made for kids so I can handle the pace, most of the time.
The days do drag on, but so far the new norm is manageable. I’m finding ways to manage. I am hoping that we come out of this thing stronger. I stay informed. There’s a blog post of all the information I’ve been gathering, but I’ll just mention one in this post and it brings me back to my remyelination trial.
I got a call from my coordinator last week that Dr. Courtney is not setting appointments for the trial until things calm down. The trial medicine isn’t immunosuppressive, but I’m on Ocrevus as well and that is. She doesn’t want her patients risking leaving their homes to come to Irvine for the trial. I almost cried in that moment. My clinical trial and my Ocrevus infusions are my security. They help give me piece of mind, that I’m going to get better. The rug has been ripped out from under me.
Still I am lucky. I am lucky that I got my last elezanumab infusion on March 12 before the stay at home order was issued. I’m lucky that I got my Ocrevus infusion in December so my next infusion is in June. I am so lucky in so many ways. I’m lucky my husband and I are able to stay at home and hold up. That fear and uncertainty does creep in. However, I’m learning not to live in it. I have two children who are so in need of me right now. So that need is my security right now. I am needed, so screw you COVID19; I’m going to stay where I am and my family and I will weather this storm! Your billows threaten, the storm grows around us, but we are warriors and we aren’t letting MS or you beat us. So throw threatening raindrops, but our best researchers are finding ways to best you! It reminds me of a song I sang in church growing up. I guess I still keep up the faith, that the Master will calm this storm, and help us stop the raging tempest from swallowing us.
Back to clinical trials and delayed remyelination- Recently I discovered an article on a new trial at UCI is starting a clinical trial testing a drug that has been tested against Ebola, SARS and MERS. It has shown promise against those infections, so clinical human trials are about to begin. They are recruiting patients to be tested for COVID19 and who would like to consent to be part of the trial. So, it seems UCI is turning all its resources against this. It is comforting to have this knowledge. Perhaps even Dr. Sy is working on the trial (pure speculation). People are fighting this, doctors around the world are turning their resources against this virus, even if other trials may be put on hold. I am a little nervous for my remyelination trial so I hope, and I pray that this works. 🙏🏼
I’m not going to give up on remyelination even though and unanticipated virus has put my involvement on hold. The terms of the trial can change and I believe the drug elezanumab shows enough promise to go forward with trials after we get through this.
I would love to hear from you in comments. It’s what gives me hope and keeps me going. The thought of someone out there reading these words and getting some value out of them is why I write. So please tell me how you are. How are you doing in all this? Are your treatments on hold or are they proceeding normally. How are you holding up with social distancing? I cried today because my kids can’t go see their Grandparents. They miss them, my son cries sometimes but thank God for FaceTime. I hope you are somewhere you can go outside and appreciate the beauty that still is amble in our world. Take care of yourselves. I leave you with another hymn, this was one of my Grandfather’s favorites: “God be with you till we meet again.”