Today was exhausting. My first appointment was at 8 am to get four more vials of blood drawn. I had 16 vials drawn last week. I had my pre-admission consult with Donna Dorr RN and Dr. Brodsky (my Oncologist). We reviewed the risks involved and I signed the consent forms. I actually really didn't read them, because they were full of nasty looking possible complications that I don't want to think about. It sounds like there is no way I'll get through this without several transfusions. Dr. Brodsky asked me if I felt nervous and I told him that I was more nervous about what would happen to me if I didn't do the HiCy (High Dose Cyclophosphamide).
Next, on to the Admissions office to sign more papers and to agree to the "what ifs?" After that I went to meet with nurses at the IPOP (Inpatient Outpatient) center. They will be my lifelines after I finish the 4+ days on the high dose chemotherapy. Everyday, I'll be escorted back to Johns Hopkins (from the Tremont Plaza Hotel nearby in Baltimore) for "chemical cocktails", transfusions and check-ups. Today a nurse explained how they will surgically implant my central line and I was definitely woozy just listening. How can two tubes be threaded down a vein under my neck and out my chest? They "reassured" me that they will give me a lidocaine shot to numb the area and something to make me relax. I'll try not to hyperventillate and I'm definitely planning on closing my eyes.
The day finished off with my first official EDSS baseline testing. That will be used to compare to results at follow-up appointments beginning three m0nths after I leave Baltimore. That was the most comprehensive neurological exam I've ever had. I did quite well on the math and memory tests, reasonably well on the manual dexterity (putting little pegs in and out of holes) and horrible on the motor, reflexes, vibration detection (from my knees to my toes), balance coordination and 25 foot walking speed. My guess is that I probably got a 5.5 from the way the doctor was reporting my results to his student watching my pathetic performance. Oh well, that's why I'm here. If I was closer to a "0" (normal neurologically) on the scale of 0-10 , I wouldn't be in a Neurologist's office. The other patients before me have lowered their EDSS results. No promises can be made to me, but I'll try my hardest to believe in this hope.
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