Yesterday was a big day……I went to the neurologist for a follow-up and received my schedule from Northwestern.
The neurologist asked how I’m doing and I told him I’m continuing to decline……he noted that when I first met with him I was walking, a couple weeks ago I had a cane and yesterday the walker. The neurologist wants me to start Acthar injections. I told him I’d think about it. I’m not crazy about starting another medication and dealing with more side effects when I’m so close to getting in. At the time of the appointment I hadn’t received my schedule yet so my neuro emailed someone at Northwestern asking for me to be scheduled for transplant ASAP. He also said I should get labs drawn to have my thyroid looked at……I told him that I’m tired of doctor’s not wanting to treat it for it not being “bad enough.” I also asked him if the symptoms I’m having (left nostril, left hand and right toes electric “zaps”, calf aches, spasms in arms and legs and feet, left hand shaking, memory impairment, increased confusion, trouble writing and gripping pen, lower lip numb, etc) and he said “yes it could be.” i looked it up online when I got home and sure enough the thyroid does control neurological function. Great. So I will let him know I’m good with doing labs and will also ask him to have the iron level checked…..for the past couple of years my iron levels have been high which I thought was just a miracle since I don’t eat anything with a face and dont even drink milk anymore…..but it turns out there is this thing called hemochromatosis which is another issue I was supposed to have checked out but I wanted to deal with the MS first…..I forgot to mention it to him. I’m just hoping a new immune system will eliminate a lot of these issues.
So….the dates….subject to change. In fact, I’m hoping a couple of the dates change so that I can get in sooner in order to get some relief faster but also to be with my “stem cell sister” Daniela since we’ve been going thru this together ever since we met at our evaluations in November.
May 9th Outpatient testing- labs
May 10th Outpatient testing- vein check and MRI
May 11th Meet with Dr. Burt
May 16th medical team reviews lab results
May 30th Admitted to Northwestern for mobilization (Taken from the handbook- Mobilization and harvest refers to process of collecting stem cells in advance and preserving them until transplant occurs) I’ll be receiving heavy chemo basically and will remain inpatient for 24 hours. I’ll give more info on this process as it goes. I will lose my hair about 14 days after this so I’ll be shaving my head beforehand to avoid the mess and hassle. I’m totally fine with it.
May 31st Discharged from hospital after 24 hours and IV hydration.
June 1st- start taking temperature twice/day until Harvest. If my temp goes above 100.5 I have to go to the ER for IV antibiotics.
June 4th thru June 9th or 10th- I start taking neupogen injections (taken from the handbook- “G-CSF is used to treat neutropenia, or low neutrophils. It also helps mobilize stem cells into the peripheral blood system for collection. G-CSF is given as a subcutaneous injection. The needles used to give the injection are very small. The medication will start five days after receiving the cyclophosphamide and will continue daily until the stem cell harvest is complete. The dose is 5-10 mcg/ kg Must be kept in the refrigerator until ready for use.”
June 6th Blood Draw
June 9th – Inpatient for Line placement and harvest- again I’ll get more into this when the time comes…..they’re taking my new stem cells and harvesting them. 🙂
June 11th- discharge if medically cleared
June 21st PICC Line Placement outpatient
June 22nd Admitted for conditioning medications and pretransplant IV meds through june 26th
June 27th Stem cells injected!
July 7th-10th Discharged sometime in this period depending on all my numbers…..
July 12th Weekly lab draw #1 of 4
July 19th Weekly lab draw #2 of 4
July 26th Weekly lab draw #3 of 4
I’m assuming the last one is a week later on August 2nd.
As soon as I get a final schedule I’ll be lining up my caregiving team and make arrangements to bring Michael and Robert here as well as lining up and scheduling my local caregiving team…..Denise, Jonathan, Roberto, and my family at this point…..
I’m grateful to be going through this process and will keep my blog updated as best as I can each step of the way. I’ll also provide more information about each step as it occurs. It’s a lot of info. 🙂
Thanks everyone for the support!