Sunday, January 23, 2011


Tom has had shingles for over a week now. I took him to the hospital for severe neck and shoulder pain last Saturday, only take him back home a few hours later with a sling around his elbow. The doctor said he had sprained his shoulder, most likely from a fall he had taken in the kitchen about a week prior - he said the pain didn't surface right away, much like an injury from a car accident. He was still in a great deal of pain throughout the night even with pain medicine, and the next day a rash started to surface. He and I thought it might be shingles, after being warned from his transplant doctor over the years that this could happen and that it would be a very painful experience. Well, that doctor was correct, but describing it as "painful" was certainly an understatement. Tom was in such a miserable state: he yelled out whenever his skin came in contact with anything, or when he moved his arm, or whole upper body for that matter. It got much worse. So much so, that I had to call an ambulance to take him to the hospital. On the way there, he was given morphine to calm him.

Once at the hospital, the doctor agreed that Tom did in fact, have shingles. After doing some blood tests, and administering some more morphine, he released Tom with some powerful pain medicine. Well, the medicine helped Tom only minimally. He was in such pain that he was yelling and cursing and crying. Even the slightest featherlight touch sent him reeling into a wave of severe, teeth grinding, eye squinting pain. It got to the point where he was so desperate that he told me if he had a hand gun, he would use it on himself, because the pain was just that unbearable. I felt so incredibily helpless that I could do nothing but cry for him. I called his regular doctor and explained what was going on and asked her to please prescribe him something much stronger, which she did - Demoral. It must be something extremely potent, as the prescription had to be hand delivered to the pharmacist - no calling this prescription in - and had to be picked up on site with ID, as opposed to a drugstore nearby.

The medicine has worked. He's not in much pain, however the rash has gotten much worse. He's scaly, dry, red, and has oozing blisters. I guess of most concern right now is the fact that he has been bedridden for seven days in a row. He was already weak to begin with, suffering from severe muscle atrophy from his disability caused by nerve damage from chemotherapy. That condition coupled with remaining in bed for so long has really taken a toll on him. He cannot stand up without major support. He can sit up by himself now, but walking is out of the question for now. He can scoot his feet a little, but it's as if his knees are locked in place.

We took on (and conquered!) a major challenge yesterday - that being getting him into the shower. I put a lawn chair in the shower (it's a shower stall - no tub) and helped get him in there. He sat for awhile and bathed while I changed the sheets and got the bed all tidy. After the shower came the hard part - I almost had to call someone to help me get him out. It took about 15 minutes just to get him out of the chair and shower stall alone. I had towels everywhere for traction. He finally got the courage to trust me to get him up and out of the chair without anything for him to hold onto. That was the issue all along. He was afraid that I wouldn't be able to support him. He finally made it back to the clean bed after which he took a long, much needed, well deserved nap.

As you can see in the photo above, he is very, very thin. As I stated before, he has severe muscle atrophy which is caused by the muscles getting very little use. The atrophy is the result of the severe nerve damage caused by chemo, and has left him having to rely on the support of a cane. Plus, he just doesn't eat as much as he used to. My shelves and refrigerator are stock-piled with foods that he loves. Since he has been bedridden I have even typed out a menu for him to select from since he is unable to peruse the kitchen. He will eat about ten bites of soup or half a health bar or an Ensure energy drink or half a sandwich. If I give him a small bowl of spaghetti and meatballs (one of his favorites) he will eat half. I just don't know how to get him to eat. I welcome suggestions!


Greg Dymerski said...

Lisa and Tom; I haven't written in awhile, and really sympathize. I love Spaghetti myself and sometimes cook it plain with a little butter and salt. I recently relapsed after 7.5 months of being cancer free with GVH after my transplant. I relapsed Jan 1 2011 and am back at chemo with Nelarabine. My appetite is so-so with things like cereal and peanut butter making my day. For protein I use a lot of yogurt with some fruit or jam in it. I will keep up and wish for the best for you. Greg

Mike said...

I hate to say it but maybe some weed will stimulate his appetite. I have your family in our prayers and wsih you well.