Are We There Yet?

Great news! Jim has hit 150 pounds! (the sound you hear is him correcting me with typically scientific precision-- "that's 149.1 pounds, actually") So I upped it by an extra Twinkie. Sue me! Since he has been off chemotherapy, he has been happily downing normal meals and snacks. Boy, nothing like a wife who can pack the weight on ya', right? That trait is the single most coveted quality in third world countries like Ethiopia, although scandalously overlooked here.

The other good news is that the doctors are again planning for the SCT. (!) Originally Jim was told he would be dropped from the clinical trial he had been enrolled in, given that more than a year has passed since he was diagnosed and signed on to the trial. Today, they told him a special exception had been granted, provided he gets this transplant soon. They are looking at November as the preparation period when he will be gearing his body up and making the stem cell collection. Collecting the stem cells will take anywhere from one to five days, depending on how many there are in his blood. (in the millions!!) Once that is done, he will be admitted to the hospital a week later, possibly the day after Thanksgiving, maybe sooner. They will administer powerful drugs which will kill all his red cells and immunities dating back to when he was kicking his crocheted booties off. His immune system will be laid bare, so there will be a time of being a "bubble boy." Once his blood counts reach a particular level, he can be released into our pristine home.

Now, a few of you are lucky enough to know my home rather well. Matt came by the other night and gave me several hundred pointers on how I might improve conditions. Something about... "Mom, NEVER buy fruit again that is not in a can!" Seems the autumnal bowl of apples so highly recommended by Martha Stewart which was buried under a ream of forms and mail on our table had become a magnet for some wildlife I hadn't anticipated. Now, these things, judging from their size, should have brains the size of, ummm, salt granules. However, they are clever enough to avoid common methods of extermination (meaning my trying to clap them dead). I opened the microwave the other day and one flew out. Red eyes and all. To my chagrin, I have discovered they have a propensity to fall headlong into a glass of red wine. This observation was made when the little b****s dive-bombed into a glass of merlot I was enjoying. In fact, two of them were frolicking playing "Marco"-- "Polo", when I noticed them. Ignoring comments of "well, they are just protein," I was forced to toss the entire glassful down the drain. Perfect example of "no wine before its time!"

In sincerity, the project of getting the house in immaculate condition intimidates me beyond belief. Are they really sending someone home with ME, who needs me to never make a mistake? Me, the high priestess of mistakes?? The penalty for a mistake might cause an infection that could kill him.

I haven't felt quite this way ever before... not even when they placed my first born in my arms and wished me luck. I knew she would survive. Babies do. But this is the most responsibility anyone has ever handed me. Suddenly I'm back feeling like a small girl, lost in Filene's Basement.(RIP) My mom and grandmother would take me there and lose me four or five times in the crowd. It was the Irish version of "coming of age". At six, you have no sense of direction, no money, and you don't know anyone; it's a wonder I wasn't permanently traumatized. (Maybe THAT's when it happened!) Unintended consequence, I grew up recognizing a Chanel suit at 50 feet.

So the moral of this blog about plans, and the likelihood of needing to change them, is that life has this way of expecting far more of you than you think you can deliver. Most of the time, delivering is under your control, but not easy. So never leave apples on your table.... they attract fruit flies.

Oh, and don't let them tell you different; it's Fuh-Leens, not FI-leens.

Gulag on the second floor

Hello, you faithful readers. My blog calendar tells me three weeks have vanished since we last met and I was retreating to the cellar and my stash of chocolate. Well, reluctantly I am back in circulation. The last 21 days have been mercifully quiet and devoid of health issues to report. Jim and I ventured into Boston this morning for his appointment with the oncologist. His red cell count is low, yet again, so he is getting topped off with two more pints of blood, even as I write this.

The current 'fantasy' is to go forward with collecting the stem cells for transplantation. It is scheduled for about a month from now, subject to bringing up his blood count. Revlamid has done wonders tackling the myeloma, but is also suspect #1 in the mystery of what's suppressing his body's ability to make new red blood cells. They have decided to suspend Revlamid for the next month or so, to give his body time to produce more red cells. His weight is okay, although a touch down from last time. We are getting all the dairy and fat-rich things into him that we can, but he is certainly not eating with any gusto.

A few things have gone away for Jim in the past year. He lost his taste for coffee, for one thing. He has also forsaken the barber and the beard trimmer in favor of more of an Al Solzhenitsyn vibe. Originally he expected to lose his hair and beard either from the chemo or certainly with the SCT. But as that has gotten kicked ahead so frequently, the hair is reaching Rapunzellian proportions. Just the other day, I caught him hanging his head out the window. Not only that, he looks like a regular Evel Knevel on his recumbent bike.

For someone who watched a fair amount of TV in his day, he has not watched any in many months. No music either. Nor does he answer the phone. And I come back to how funda-mentally different he and I are. I have never been too sick to answer the PHONE! R U Kidding? Of course, obviously I have never been as sick as he. I miss hearing the car coming in the driveway before dinner. (I could always hear it as I was frantically trying to defrost something and cover it with tomato sauce before he walked through the door. Don't knock cinnamon toaster strudel with tomato sauce til you've tried it.) And we used to have so much to talk about... he, the inveterate watcher of those McLaughlin people who are always talking over each other, and me always talking over him. Things will undoubtedly change yet again, once he recovers from the SCT whenever that happens. We are both altered by this experience and it will be interesting to see who we are if life should return to "normal."