The last few days at Clinica Ruiz in Puebla, Mexico were a flurry of final details and goodbyes. Friday, the last full day we were there, was one of those fully depleted, need to stay in bed sorts of days. I spent some time in the morning with our cohort, then went to bed for most of the afternoon. The last person in our group to complete his rituximab infusion was able to do that successfully, in the nick of time and our whole group was complete, “all for one and one for all!” was our motto. No one was leaving until everyone could leave.
As a very nice surprise Dr. Richard Burt of Northwestern University, the physician responsible for the only research study in the US for this non-myleoablative treatment for MS, happened to be visiting Clinica Ruiz and came up to the roof deck and spent an hour talking with all of us. He is a bigwig, but very down to earth and a strong advocate for access to this treatment in the US and around the world. It was very generous of him to spend so much time with us.
That evening we all met upstairs for the final time we would be together. The kitchen had generously made us cake to help with our celebration. Many stories were told, well wishes were made, and tears were shed. We had all been through something extremely intense together and we were about to scatter ourselves around the planet. Everyone was aching to get home and simultaneously sad to leave the company of the only people in our lives who would really get what we had been through.
8:30AM Saturday morning the first four people loaded up in a van to head to the airport in Mexico City and a bunch of us came down to see them off. The next four people piled into their van at 9 AM for the beginning of their journey home. Mom and I were next at 10 AM. The remainder of our cohort were the Europeans whose flights didn’t leave until the evening. There is a map in the entryway to the clinic where you put a pin to show where you came from. We added our small tokens to the evolving story of this clinic and prepared to say our goodbyes.
Our van trip went quickly, and we arrived at the airport in Mexico City with tons of time to spare before our flight. Because of my disability I requested wheelchair service on both ends of the flight which made travel through the airport incredibly smooth. I didn’t get pictures of our wheelchair angels, but they handled everything including all the paperwork necessary for travel, checking in, getting our boarding passes, getting us through customs, all of it. I was especially thankful for this because it allowed me to spend as little time as possible amongst crowds which is particularly risky for me with the degree of immune-vulnerability I have at this point.
The flight went smoothly, getting through customs on the US side was fast and we were scooped up by Nils and Lloyd when we reached baggage claim. So sweet to be connected again to my love. Nils put his hand on my shoulder, and I felt an intense feeling of relief and safety and burst into tears. I hadn’t realized how much I’d been holding until that moment.
We drove through the rain and air that felt so fresh and clean. We arrived home at close to 10 PM, did the minimal things needed before climbing into bed, and I slept deeply and peacefully and comfortably. So beautifully surrounded by home.
Because of the time difference I woke up around 5 AM and remarkably felt refreshed and alert. I expected to feel beat up and worn out after such a long day of travel, but I felt great. We woke up slow and had a lovely breakfast. Nils had invited our community to come say hello at 10 AM. He had expected I would be only be able to wave from the window, but I was easily able to go out on the patio and talk with people, connect and feel alert and strong; way more capable than I expected to be after treatment. I’m blown away with how okay I feel. It was lovely to see everyone in the beautiful blue-sky window that happened on Saturday morning, before the atmospheric river that descended upon us that afternoon. Nils and I kept remarking all day long how much different this reality was than we expected. One of our neighbors made us a beautiful dinner and we had a quiet and relaxing evening at home together.
Now it is Monday. I am again feeling pretty okay. Nils and I are spending these days figuring out the new normal in our day-to-day home life. My immune system is nascent and fragile. Surfaces must be kept clean, hands have to be washed constantly, food has to be carefully navigated to protect against foodborne illnesses, and though I see people I need to be very careful about all the viral and bacterial invaders that are out there.
Now begins a long journey of recovery. I will begin to incorporate movement, physical therapy, gentle exercise, all the pieces to begin to rebuild my body with the hope that I am no longer pushing back against the tide of disease progression. It is a long game. It will likely take a year or even two before I will know how effective this whole process has been. These are early days and my work is to maintain a mindset of optimism, motivation, and commitment to success. Part of this is in the hands of fate and faith and part of it is in my hands.
I plan to continue this blog through recovery for those who are interested, mostly to document my own journey, but also for those who may be following this same path. Thank you to everyone who has supported me through the most intense phase of this process. I was sustained and held more powerfully than I ever could’ve imagined and there aren’t words to describe the depth of my gratitude. I love you all!
For my own memory and for anyone else’s interest, I wanted to recount the four weekend monumental days that proceeded where I am now. All of this is written in a somewhat fatigue and chemo haze, so again mostly clinical not so poetic.
