Transition point

Well, it seems that we've come to another point of transition. Joshua has been increasingly tired over the past six weeks. The transfusion of two units of blood he received on Feb 21 only gave him a small boost in energy. In fact, we just saw his doctor yesterday, and he is still very anemic. He is tired not only because of this anemia, but also because that is the nature of the cancer eating away at his body. Because last month's transfusion had such little effect, he decided to pass on getting one this time. Getting the transfusion entails nearly a full day at the clinic, something he is definitely tired of. He hasn't been getting out of the house nearly as much, so life has slowed down significantly for us. In fact, walking Jackson once or twice a day is about all he has energy for. In general, he still naps just an hour or two a day and spends the rest of the day reading or watching t.v.

We increased his pain medication a week ago to keep up with the pain that has been creeping into his thighs and knees. While this worked to keep the pain at bay, the side effects of the increase started to take a toll on him. Right away, we found that he was even more tired than he had been and he was constantly quesy. We discussed all of this with his hospice nurse, Jim, and with his doctor at the V.A. Jim recommended moving to what is known as a pain patch. It literally is applied to the skin and the pain medication is absorbed through the skin. We are waiting for our first delivery of that from the pharmacy to arrive this afternoon.

Despite this recent increase, Joshua's pain has continued to spiral in the past 24 hours. He was up most of the night with increasing pain in his thighs and knees. I was on the telephone three times with the on-call hospice nurse (bless hospice!) for advice on the right dosages of medications to give him. It took until 6 this morning to get everything under control. At that point, I think the build-up of everything we had been giving him throughout the night finally took effect. He has been sleeping solid since then.

It turns out that Mabel is with us for a few days. She arrived yesterday and is here through Monday. I hate that she has to experience this awful part of the disease. Our original plan, in fact, the intention of her trip, was to give me a break for a couple of days. I had hoped to go away on Friday and Saturday to get some fresh air and recharge, leaving Joshua in her good care. I think they were both looking forward to spending a couple of days together. With this sudden change, I've canceled my plans, as I don't want to leave him in this state, and to be honest, I'm too tired for fresh air anyway! If we get things stabilized today, I may head to the beach or something tomorrow.

I'm sorry I don't have anything better to report. So many times before we've hit major points like this and I've prepared myself for a rapid decline. Yet we've always hit the right balance of med's and energy. I know, I think we all know, that he has this incredible will to live, an unspoken, perhaps unconscious desire to push on. It is this that has kept him going for so long. He has amazed his doctors and nurses many times over. I know too, though, that we are going to reach a point where the will is no longer enough. I don't know when that point will come, but I know we are creeping closer to it.