Hi Friends!
Today was my first day of treatment #3. I will be getting high-dose steroids by IV 3 days a month, and Cytoxin (chemotherapy) 1 day a month for the next year. So, 12 treatments in all! For those of you unfamiliar with my saga, I have CNS (Central Nervous System) Lupus. It's a rare form of lupus, which is an auto-immune disease. Basically, my immune system started attacking me. I was hospitalized several times due to brain and kidney damage, as well as joint damage and other issues with the lupus. After trying many medications (I'm still on over 20 different meds per day), I was told this was my last and only hope for remission. It does seems to be working, so I am hopeful for the first time since January.
So, I am still battling back-to-back kidney infections (literally). I had 2 in the last 2 weeks. I was feeling really weak and had my horrible lupus headache. My brain actually swells up, so it's no wonder it hurts. I was actually looking forward to the treatment, because the steroids usually help me feel better (less headachy at least) right away.
My friend, Annie, took me to the oncologist's office. His name is Dr. Menco and he's in Thousand Oaks, right next door to my rheumatologist Dr. Cohen. So, it works out great as they can discuss me often -- "their most interesting and complicated case." Today I had 1,000 grams of Solumedrol, a high-dose steroid by IV. It is being used to heal all the damage done to my body by the lupus. We were there for a few hours, and we had a good time talking with several other chemo patients and their spouses or friends.
The steroids give you lots of energy -- too much energy. It's kind of like having ADHD or being drunk, or a combination of the two. You can't sleep, and all you want to do is eat, and you get very slap-happy and/or over-emotional. Right now, I am feeling OK -- but dizzy and my eye-sight is very blurred. I really don't know why people do drugs, because it's not that much fun.
Of course, I was hungry for lunch after the treatment, so we went out for lunch. And then for ice cream at Cold Stone. I had "Hunka Hunka of Burning Fudge," because my motto is that chocolate makes everything better. My vertically-challenged friend, Annie, had "Who are you Calling Shortcake." We also stopped at Borders, and got the Alicia Keyes new CD, because I am convinced that I'm "SuperWoman," which is one of her new songs. I also have been obsessed with Daniel Powter's "Bad Day," which Annie got me for my birthday. In fact, Nate asked me to stop playing it this morning. He said he couldn't get it out of his head.
By the time we got home from all that, the kids were getting home from school. Annie is staying with us for the week to help me, because of course Bill has to work. I don't have the energy to take care of the kids myself, and it wouldn't be safe for me to drive right now. I'm blessed with a lot of help. Judi, my neighbor and good friend, picked up Cameron and Molly from school, and Sandy Swink (from church) picked up Nate and Isaac from school. We managed to get everyone's homework and chores done and they bathed/showered. Bill came home, and the Fields' (from our Bible study group) brought us dinner. It was great. Thanks, Ross and Carrie.
We're getting ready to put the little kids to bed, so I'll sign off now. I'll try to write more tomorrow. Day #2 (Tuesday) is more steroids, and Day #3 (Wednesday) is steroids/chemo. If I can't write, Annie has promised to be my ghost-writer. And we took some pictures today, so I'm hoping Bill or Annie can put them on the blog later. I'm not that computer-savvy! If you haven't seen me for a while, don't be alarmed -- the steroids have made me very puffy and caused me to gain 30 lbs, and the chemo is causing my hair to fall like snow. So, Shirlene (another friend) has cut my hair very short, and I'm wearing lots of scarves or hats -- again given to me by many good friends.
Let me end by saying I feel really blessed by this whole experience. My life has slowed down, and I am focusing on what's truly important. And I have really found out who my friends are! I am surrounded by a large group of caring and loving people who would do anything for me! Thanks for all your prayers!
Much Love,
Michele
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