The Light At the End Of this Tunnel

Two days after a spectacular night when every thing seemed to go wrong, Harvey is feeling better. The fever is gone, as also the vomiting. Diarrhea is trending down but not quite done with. I am sure all of us have been amused by dogs going round and round, chasing their own tails. The faster they go, the harder it becomes to get at the precise spot that is itching. It is sort of like that. Every drug given to the transplant patient causes some unwanted side effects, which need some additional drugs, which cause more side effects and so it goes. My next post will be all about antibiotics and a nasty bug called c. Difficile.

Today Harvey’s blood counts were anything but normal. For the first time in his life, his ALC (absolute lymphocyte count) is down to zero. As in zip, none, nada. Also for the first time in his life, his hemoglobin level is below the formal definition of anemic, at 9.5. Platelets have dived to 35. All of this would have been scary as heck in a “normal” CLL patient, but not in a patient going through transplant preconditioning. As we said in earlier post, many of the drugs used (ATG, F and C) are “dirty” drugs in the sense that they target many different cell lines. The CBC results are to be expected, and therefore not as scary.

Tomorrow is reserved for full body radiation. At 200 cGy, we are talking about a relatively low dose. As a comparison, full myeloablative transplants use much higher dosage of radiation – as high as 2GY (or 2,000 cGY). I am told most patients tolerate the 200 cGY radiation very well, nothing more than mild fatigue is expected as a side effect. But it will do its job of killing quite a bit of the remaining bits of Harvey’s immune system, cleaning house as it were, before the new graft comes in on March 26th. Harvey was disappointed to hear that post radiation his pee is not going to glow or anything cool like that, but that yes, he will set off airport detectors for the next few days if he tried to cut and run.

It is hard to exercise when one is hooked up to an infusion pole carrying more plastic bags than seems reasonable. The tanking hemoglobin and red blood cell counts also make it hard to get going. For the first time yesterday Harvey got on the treadmill in his room, walked for about a mile at a sedate pace. It was hard for me watching him struggle at this slow pace, having seen him jog and sprint at a pretty hefty clip back home. I doubt he would have managed to do even this amount of exercise, but for his will power and regular training in previous years. All the docs here really encourage patients to get out of bed and exercise to the level that they are able. Did you know that one of the risks of staying in bed all day is decreased lung function and possible pneumonia? Use it or lose it. Your heart and lungs need regular use to keep their muscle tone.

There was an awkward moment yesterday. The way things are organized here, the regular bone marrow team doctors are around Monday through Saturday. On Sundays some of the work load is farmed off to a “moonlighter” doctor coming in from one of the other hospitals in the city. Harvey was visited by the moonlighter doc doing his rounds yesterday. Nothing wrong with that. But as the doc bent over Harvey’s bed to listen to his heart and palpitate his belly, I could not help but notice his white doctor’s coat was anything but white, parts of it were positively grimy and filthy.

The BMT staff and visiting family members go to great deal of trouble to protect the patients from germs that can be lethal to our guys in their terribly immune depleted state. We are positively religious about washing and sanitizing our hands before we enter the rooms, make sure our winter coats and winter gear is stowed away in lockers outside before entering. I change my shoes so that I do not bring in the germy outside stuff into the patient’s room.

It annoyed the heck out of me that this guy was willing to sabotage the whole team effort with his dirty lab coat. If he is not professional enough in his personal grooming, how can I trust him in other aspects of his hygiene? Did he wash his hands after he visited his previous patient and before he entered Harvey’s room? It was at the tip of my tongue to tell him I would rather he did not examine Harvey. I should have and I kicked myself later for not having the guts to do it. But cultural conditioning so so strong. None of us feel comfortable coming right out and telling a doctor like this to take a hike. But I did do other patients a favor by bringing my observation to the attention of the nurse. I hope it traveled up the chain of command and someone in authority spoke to this guy. There is no excuse for this kind of sloppiness.

I am coping. It is not easy, but we all do what we have to do, cope with things when we must. Our apartment is just a couple of blocks away from the hospital. When the weather is nice it takes just a few minutes to walk back and forth. When the Minneapolis “spring” is a little too cold for my taste, or the sidewalks are slippery with new fallen snow, I use the shuttle service. It is available 24/7 and a tremendous service. Argyle House (where we are staying) is clean, functional and comfortable. It is not home, but it will do for now.

Thanks for the good wishes. Harvey and I really appreciate them. It is nice to know we have friends out there rooting for us. We are both well setup with our laptops up and running, so we can be reached by our usual email addresses. Keep in touch!

Be well,