Juuuuust A Bit Outside: Two Thousand Ten, Don't Do It Again

Bob, Mary, Steve, & Peter ~ Thanksgiving 2010

We're still here, alive and kickin' it on the southsiiiiiide of Chi city. Well, maybe not high kicks just yet. We are taking life one day at a time, our new normal. Some days are "good" and you can feel a forward vibe. On those days, Steve scurries to do office work, drive to the bank, and rides the waves of energy. Other days we have given the moniker "reset days." We refuse to call them bad days. He feels his recovery is much like a series of plateaus (forgive moi, plateaux?); long, rather uneventful days on end, one up just a tad improved from the former level. The Big Three at our house are not Ford, GM and Chrysler...rather red cells, white cells, and platelets. We have been told flat out that many of the lab results and trends have no explanation as his case is both rare and complex. So we wait and watch, avoiding infection, our biggest and most dire threat. Tonight I am writing under The Reppen Homeland Security Orange Warning, he has an abscess in his mouth and he is gulping down big doses of.....PENICILLIN! Imagine! Let's hope this passes quickly. We have been extremely fortunate since his first chemo in May. 90% of the infection battle is getting ahead of, not behind, the 8 ball. Steve Jobs, thank you for the incredible iPhone 4, what a lovely, sharp picture can be taken of the inside of your mouth, e-mailed to the hospital, and then to your doctor on holiday in the Middle East. I wouldn't be surprised if Dr. Altman called from Israel to follow up on her star pupil.

We just received a preliminary report on Steve's (7th!) bone marrow biopsy from 12/22 and are thrilled to tell you that he is still FREE of any leukemic cells. It appears his cellular activity has also picked up a bit, so when Dr. Altman returns I'm sure we will get the full scoop, along with the other high-level test results.

We go to clinic for checkups every OTHER week now, a big step in recovery. They draw his blood first, checking for Tacrolimus/Prograf levels that are SO key to anti-rejection. As you recover, the Tacro levels are reduced. Since I last blogged, Steve's Tacro has been reduced markedly. Reduce, check for GVHD symptoms....check, reduce...check, no change.....check, reduce......and so the game goes. His only GVHD symptom is mouth soreness, upper mouth behind his front teeth. He feels discomfort and mild pain when biting down or chewing, much like a sinus infection. HMMMMM say the nurses and Dr. Altman. Not mucositis...just a Steve thing. Interesting.....they say. Neil Armstrong stepping onto the Moon was interesting, this is a pain in the ass.

His weight went up a wee bit this last visit, a bulky 154 pounds. I am feeding him ANYthing he wants, especially ice cream. Tonight for dinner he had a sweet potato and butter, ice cream, and some Kraft Mac 'n' Cheese. And then more ice cream.

He receives blood on a regular basis at Christ Hospital, or, in a pinch, at Northwestern. He can go about a week to ten days without needing a transfusion. His threshold is a hemoglobin value of 6.8. Any lower than that requires blood. Yesterday he was 7.2. We have a weekly "fill-up" appointment at Christ in case we need it. They have been extremely accommodating to us and they have a blanket warmer, Steve gets some serious ZZZZZsssss there and loves the attention!

Platelets (ahhhh, remember "Bleeding Out, The Movie?" Sue, he could have "an event" like a stroke or friggin heart attack, please do come directly to the ED should that happen, and enjoy the rest of your day at Great America, thankyousomuch) are a rrrrrrrrrrrrrrowBUST NINETY THREE, as in, take that damn spleen out and run into the end zone for a Lambeau Leap. Spleen, The Sequel, is coming to an operating theatre near you in January....I *think,* and he is resolved to this next step.

Our biggest challenge right now is his white cell count. Since last posting, his white cells have steadily declined. White cells fight infection. The professionals are not concerned. I am. He is neutropenic again, with a WBC count of 0.9 and absolute neutrophils of 200. That stinks. He is at risk, so no crowds. We have left him home from events with large amounts of people, yet he did go to Costco on Christmas Eve for some shopping (see pic!). This is really hard emotionally for the kids and I, as he seems "better" but we don't dare expose him to the flying phlegm show of holiday sickness and dumbassness of people who go out in public with illnesses. You have to live your life, how much can he be cloistered and get well in spirit?

Everybody, WASH YOUR HANDS! Did you know that 80% of all illnesses are spread by hand contagion? Yep. Wash your damn hands, I don't care if you "haven't touched anything" or "aren't sick" or "I washed them at home." Seriously??? And do this for everyone, everywhere. Thank you. And get a damn flu shot and shut up about it. And thank you again. And ORANGE is OUR ribbon color, stop with all the damn pink year-round. And Chuck Martin, if you are reading this, I am all about Colorectal Cancer in March with you and your homies. :-D Thanks for supporting this paragraph of ranting.

So I bring to you some fun fam pictures. You can see that Steve's hair is growing back very nicely. Compare Thanksgiving versus 12/25's picture. Mary was Steve's donor (Happy Birthday today, Mary!) and we were SO happy to get a great photo of Steve with his life saving sister. What better Christmas gift than the gift of life to a sibling?