Thursday, July 20, 2017

Meeting the actual Oncologist

Yesterday, we met with my actual oncologist. Usually, we meet with Mary, a nurse practitioner, but it had been well over a year since meeting with Dr. Richardson  and we decided it would be good to see the great man himself.

Dr. Richardson is always totally positive and very effusive about how wonderfully I am doing. I think he views patient attitude and optimism as very important and part of the treatment. I therefore try to put what he says into perspective. This was the case yesterday as well, but I can't say that my bullshit filter went off during our visit.

Anyway, he said that I am doing great and that he thrilled at the way things are going. He said that the current treatment had put my disease into "remission". Actually, this is not true (see paragraph above). Remission would mean that I can take a break from treatment, which I cannot. My disease is "responding" very well to treatment. I think that what he was telling me is that as long as this treatment works and I can stay on it, the disease is not damaging my body.

The primary question I had for him was whether my bones were continuing to deteriorate. (I call it "bone rot".) Please understand that every time I feel and ache or pain, my first thought is that the bones at that location are rotting. He said that this is not the case. The radiologist who read the Skeletal Survey a couple of months ago said there was "minimal" progression of bone deterioration. I asked Dr. Richardson what that meant. He said that it did not mean anything; that my bones are stable.

Nor are they healing, either, in spite of the fact that I take Zometa every 3 weeks. But they are stable which is good news. Here are the answers to some specific question that I asked him:

* I do not have to worry particularly about breaking bones by stressing them with my muscles.

* It is OK for me to lift heavy things without worrying about breaking bones.

* I must continue to avoid any activity that bounces my spine such as horseback riding or skiing.

Since Barbara and I have been mostly grounded for the last nearly 4 years, we are beginning to get a bit of "Wander Lust". I asked about the possibility of scheduling a trip somewhere if that were to delay a chemo cycle. He said that I could probably delay one for a week, but that two would be pushing things and three would be definitely not recommended.

We talked about trying some of the emerging treatments that are coming along. His recommendation was for me to "stay the course" since it seemed to be working well and not to risk messing things up. Also, these emerging treatments get better every year, so better to wait as the treatments get better than to rush into things.

So, life continues. My side effects seem to be pretty stable. Cramps at night, using lots of Imodium, peripheral neuropathy in my feet and now lower legs. I mentioned to him that I have been feeling pain in the end of my toes which I though might have to do with the neuropathy. He said, "This doesn't bother me." I replied, "Of course it doesn't bother you. You're not the one with the sore toes. . ." and we laughed.

My biggest complaint these days is that I can be very tired on quite a few days and it seems that all I want to do is sleep. But hey! There are other days that I am full of energy, so I am glad for that.

We are mostly in New Hampshire in the summer. I have to be at Dana Farber on two Wednesdays out of three. Barbara has often has important Fox Hill Village meetings on Tuesdays. Usually we drive down together, but last week, Barbara went down on her own. You know that she has this fancy car with the "Auto Pilot" which drives the car by itself on the highway. Barbara does not use this feature, but last week she called me from the Outlets in Merrimack and explained that the car had driven off the highway and all the way to the outlets totally on its own. There was no alternative but for her to do a bit of shopping. What could I say?