I’m actually awake and coherent enough to type tonight, I bypassed one of the the meds for a few hours so I could function a little better.
My blood counts are doing exactly what they should, and they will continue to drop thru Sunday. Even showering feels like running a tough mudder. Ironically, killing the immune system to enable regrowth is the goal here so I am right on track! I will be neutropenic for the next 7 days or so. Dr. Burt came in the morning and reassured me things are looking very good. I was spiking a fever yesterday but we were able to quickly get that under control. An infection during this time is what we want to avoid as my body isn’t quipped yet to fight anything off.
The large doses of steroids are really bloating me out. I’ve morphed into a puffer fish, Charlie Brown hybrid. So if you can’t find Dory, just search out for her friend, you will have no problems. If I deliver twins tonight they likely will come from my face and stomach and will need some major detox. My nurse swears I will deflate. I did need a blood transfusion as I think Matt mentioned yesterday. Initially I thought I would imagine some really sexy famous persons blood, but quickly readjusted that thought to someone very very pure. Rich B. told me before I left Paige is a universal donor, and that would be perfect. That family is full of clean pure recessive genes. Anyway, it was gross but needed and likely tomorrow again.
I’ve become one with my IV pole which is constantly attached to me. I decorated it with a monkey mom sent and some lights to entertain myself. I also had nice woman from Gilda Radnor’s foundation come sit with me with protective gear and show how to make a bear heart magnet out of pipe cleaners. Honestly it was a distraction and sweet that they try to make people feel better when their bodies are being abused in this sort of way. They have classes and things but I’m on an isolation floor so I cannot attend those but if Matt gets a urge to learn Thai Chi among conference calls he has a new hang out spot.
I’m missing the kids a lot, I sent some things home for them last night at 2am. The steroids make it hard to sleep. And they make me a little irritable. I swear when Matt was eating chips it was a bag of rocks. Yep…pretty confident he was chewing rocks. We MUST get him to the dentist ASAP.
I love the pics everyone has been sending me of the heart shirts, they are making me laugh. I print them to Walgreens downstairs and Matt tapes them on the wall. All the nurses and docs look at them and think how sweet and thoughtful and awesome all my friends are, and I’m feeling the same. The love and support from everyone back home is just hard for me to even believe or comprehend. I’m incredibly lucky to have all of you and grateful to have these two months to take this MS out on a permanent vacation so I can be the kind of friend to all of you like you are being to me. Thank you to mom for managing the girls busy schedule! I have nothing to complain about. At. All.
I heard two stories first hand (and saw video from another patient) regarding this transplant for aggressive MS. A woman was a quadriplegic from numerous spinal lesions a few years ago, had this same/similar treatment in Russia or Canada. She cross country skied this week. Also, another women exactly my age was told she would die if she went through with this. She walked outside my door 200 feet with a cane when admitted here four years ago. She just finished a 10 mile outdoor run in Alaska. We got a lot of opinions when I received this diagnosis. I was told I likely will have major mobility problems within a year if I stayed on course, I was told this treatment will age me, I will die, I will never have any more kids (already love the ones I have )…etc. But all I’m seeing is hope and a very very good chance at never relapsing again. Neurologists are coming around very slowly unable to refute undeniable clinical data, but FDA approval will likely be closer to 2022. By that time it would likely be too late for me.
I’m realizing this is more of a distance run than a sprint so I’ll need to take it seriously and give my body time to heal. 6-12 months from now I will have more to give that I would not have if I hadn’t made this decision.
Can’t wait to get back home to my own bed and off all these drugs. In the meantime, I’m in very good hands. Be home soon!!!!
Jennie's MS Journey 