Phase 2

I'm tying up loose ends and meditating on my journey ahead. Most of my hair has fallen out from the chemo used to harvest my bone marrow stem cells in December. That low dose of chemo has already suppressed my immune system enough so that I have noticed some improvement in my walking. This bodes well for the hoped-for success of HSCT Phase 2 as outlined below.

Jan 15:

Fly to Chicago and have a picc line catheter installed in my jugular vein. Chemo, drugs and my stem cells will be administered via this port. I thought about posting a video of the procedure here, but opted not to. Suffice to say, I've had it done before. You stay awake for an outpatient surgery. It hurts a bit, but the worst part for me is that it's awful to think about. The surgeon says it's no big deal. Riiight.  I will be attempting yogic meditation to allow my consciousness to leave my body, and the operating room, while he's shoving that squid-like contraption through a hole in my neck.

Jan 16-20

MS is an autoimmune disease of the central nervous system, so a daily chemo blast will be used to wipe out the immune system that went haywire on me years ago. Because of this intense immune system suppression, I will be in isolation, under constant monitoring and receiving a cocktail of antibiotics to prevent infection. I will also receive additional drugs to protect my organs from the chemo. 

Jan 21-31:

The bone marrow stem cells that were extracted from me in December will be transplanted back to build a new "antigen-naive" immune system that won't attack my nerves. This is often referred to as "stem cell rescue" because the patient cannot live for very long without an immune system. As the word "rescue" implies, this is the riskiest time of the procedure. 

 

February???:

Discharge from the hospital will be possible as soon as tests show that I have a functioning immune system. This will likely be sometime the first week of February, depending on how quickly the stem cells engraft and I develop adequate white blood cell and antibody counts. I can expect my new immune system and my body function to see anything from rapid, to gradual improvement. Every person is different, but Dr. Burt says patients often continue to improve for 2 to 3 years after HSCT.

The Future:

HSCT is a bit risky and not easy, but I expect to succeed and recover to begin a new life without MS. I base this on the fact that I am still considered to be in the early, inflammatory stages of the disease. Chemo will stop the inflammation in its tracks. HSCT is the only known effective way to halt MS, stop inflammation and allow the nervous system to heal.  

In addition to working on whatever writing projects I can handle, I will begin physical therapy in March to regain mobility. Visits to an endocrinologist and hematologist will help ensure vital body systems still function properly.

I've always enjoyed challenging myself physically. Though never a gifted athlete, I was tougher and stronger than most. Now MS has made me fragile, and barely able to walk with a cane for a few hundred feet. 

Fighting back from MS will be my biggest challenge ever. Successful  completion of HSCT is just the beginning.  My vision for the future may no longer include full-contact martial arts, snowboarding or breakneck-speed mountain biking, but long walks around the lake, sailing, canoeing, golf and an active lifestyle now feel once again within my grasp. For that chance, I am beyond grateful.