Flying Back to Denver for New T cells

Hi Friends,

In less than one week, on May 11th, I'll be on my way back to Denver for the second part of my Stiff Persons medical trial. My team will infuse my new improved T cells back into my body. I'll tell you it can't come fast enough for me. The doctors want all the IVIG residue "washed" out of my body. Going two and a half weeks past my scheduled IVIG for my first trip made my muscles feel terribly stiff. But now, again, I'm past when I would have had IVIG and my muscles are protesting by forming knots the size of marbles in my legs. And the muscle stiffness is now affecting my back and even my neck and shoulder muscles. I hurt!

This stay will last a grueling 39 days, including 10 days as an inpatient. To help myself stay positive, I went on a pre-trip online shopping spree! I bought new capris, tank tops and T-shirts, pajama sets and a lightweight cotton sweater. I'm ready for the warm weather in Denver (forecast of partly sunny and 76 degrees) the day we arrive. In an abundance of optimism, I bought a new pair of Skechers walking sneakers in my favorite teal color. My hope is to be using them a lot, after getting my T cells, as I learn to walk properly again. My mantra is "Have shoes, will walk!"

New Clothes for Denver

My dearest friend Monica will accompany me. She and her husband Wayne, who live near Denver in the winter months, did a great job looking after me during my first trip to the Anschutz Medical Campus in Aurora. They arrived at their Maine cottage on May 1st. Sadly, Monica will only have 10 days in beautiful Maine before Wayne will drive her to Belfast, pick me up, and deliver us to the Bangor Airport before 10:30 am. I'll also be taking my trusty Zinger chair with me so I can whiz through the airports, around inside the hotel and down the hospital hallways.

For this trip, I made all the travel arrangements myself. I had flights, hotel rooms, and ground transportation arranged two weeks in advance to avoid the stress that the trial sponsor's logistics company put me through on my first trip. Since there are no direct flights to Denver from Bangor, we'll have a 3 hour and 40 minute layover in LaGuardia, arriving in Denver at 8:30 pm

We will be staying at the Hyatt House in Aurora across the street from the Anschutz UC inpatient hospital. Depending on the location of my room when I'm an inpatient at the hospital, and if I get the same handicapped hotel room I had before, Monica and I may be able to wave to each other!

I recently got a detailed Itinerary of all the appointments I have between May 12th and June 16th. I got exhausted just reading about my schedule. The high level overview includes an initial check-up visit on May 12th, outpatient chemo therapy May 14th-16th, T cell infusion May 19th, in hospital for observation May 19th- 29th. Outpatient follow up visits on June 2nd, 5th, 9th and 16th. Fly home to Maine June 18th.

I intend to keep blogging throughout my stay in Denver, depending on how I feel, but I am hopeful all will go wonderfully. I'm ready for this (actually I've been ready for this for 8 years now!). With Monica at my side and the CAR-T team watching me 24/7 I couldn't ask for better care.

My next blog post will be from Denver. Take care everyone!

Brenda