Wednesday, March 4, 2009


Tomorrow is my second of six mitoxantrone treatments.

Mitoxantrone is a chemotherapy drug that is cardio and cyto toxic. If I take too much or for too long it could damage my heart. I also have to make sure that no one is exposed to my bodily fluids for 48 hours after I am dosed.

It's delivered with an IV steroid and an anti-nausea drug. It takes about two and a half hours to get all that into my system.

I receive about 1/4 of the dose someone with cancer would get, and it still makes me ill if I don't monitor my intake of anti-nausea drugs. It was really difficult to make sure I got the dosing right the last time with only 12 hour Gravol (that only lasted 8 hours) to deal with it, so I think that the MS clinic and I have decided that I will get a prescription grade anti-nausea drug this time.


I seem to have spent much of this day trying not to be terrified of the next two weeks. The side effects of my first treatment were so freakin' awful that it's difficult for me to just stay in this day, where I'm not sick and actually feeling like I am starting to gain the long term benefits of this treatment.

MS is an auto-immune disorder. For some reason my immune system thinks that myelin (the fatty insulation coating around the nerve endings) is the enemy and must die. When your nerve endings get demyelinated you start getting scrambled or dropped signals. In the simplest terms, my brain regularly gets "404 - Page not found" errors. The idea behind getting chemotherapy is that it will stop my immune system from eating my brain fat.

Everyday I don't have feeling in my finger tips and toes and I have fatigue. Most days I have uncoordination on my left side, pain in my joints, pressure behind my eyes, a loss of focus in my vision when I get tired, and general cognitive shortages. I have a difficult time sitting down to read, as I forget the paragraph I just finished, so the next one doesn't make sense. I've asked Joe for a knife when I meant scissors. That sort of thing.

As someone who prided herself on remembering every postal code and phone number she's ever had, having these kinds of deficits are frustrating to the point of anger. I feel like I'm not smart anymore. I can't go to work anymore. I can't dance anymore. I can't wear high heels anymore. My skin and hair are a mess from the chemo, so I don't look pretty anymore. Because I'm such a mess I don't go out anymore, except to go to the doctor.

It's like I've lost most of my identity to this disease. Everything I loved about being me is gone except for Joe, my friends, my family and my apartment.

My internet friend David was nice enough to buy me a book from my wishlist called MS and Your Feelings by Allison Shadday.

In it she gives a list of signs that you've come to accept your diagnosis and disease. The first one is:

MS is no longer the focus of your life.

At 82 days, this seems impossible. I can make it to the corner store on my own and that's an accomplishment! The idea that MS will no longer be the focus of my life is so unrealistic at this point it seems almost otherworldly.

I'm not saying it's impossible. I'm just saying that it's difficult to believe.

1 comment:

  1. Hi Lori,

    I've come across your blog and see that you are newly diagnosed with MS. I'm very sorry for that but would like to welcome you to the community of MS Bloggers. There are some very supportive people around here who are not afraid to 'tell it like it is.'

    The first year after diagnosis truly is the hardest and I hope that Mitoxantrone works to slow the progression down for you. If you've got any questions, please don't hesitate to ask.