Tuesday, December 20, 2005

December 20, 2005 - In the Sloan-Kettering Book of Life

After several weeks of persistent efforts, I've finally succeeded in getting my name onto the calendar at Memorial Sloan-Kettering Cancer Center. On January 17th, I will meet with Dr. Carol Portlock, the lymphoma specialist whose name Dr. Lerner recognized when I told him about her.

It seems Dr. Portlock's office staff knows of Dr. Lerner as well. The receptionist recognized his name when I mentioned it to her. I consider that a good sign. My hope is that the two of them can collaborate on coordinating my care, and that whatever treatment regimen I may ultimately undergo can be administered in Dr. Lerner's office near our home. (I'm prepared to commute the 2+ hours to New York for chemotherapy if absolutely necessary, but I'd prefer not to – I've heard enough stories about chemo patients driving home with a nausea bucket on their knees, and would rather that drive be as short as possible.)

I've been feeling more fatigue than usual the last couple of days. I'm noticing that I'm sleeping for shorter periods of time at night, and awaking feeling more tired than usual. I've never been much of a one for midday naps – my experience has been that, even if I'm feeling tired, the best I can do is shut my eyes and doze a little, and I don't end up feeling very rested. (I can't remember much about my nursery school days, but I'd be willing to guess I was one of those kids who wiggled and squirmed through naptime!)

Is the fatigue a symptom of the lymphoma? Or is it more of a psychological response to the stress of this experience? It's hard to say, although the feelings of fatigue are unmistakable. And it feels different, somehow, from the sort of tiredness I feel when I've simply stayed up too late at night and arisen too early in the morning. My pesky internal clock seems to be getting me up at about 7:00 a.m., regardless of how tired I feel – so sleeping in doesn't seem to be an option.

Giving myself permission to stop and take a midday nap is not easy for me. My personality is closer to the "workaholic" than to the "laid-back" end of the scale. But this is probably a skill I'm going to need to learn...


Anonymous said...

I am so sorry you have this cancer but I understand that S-K is the best hospital with the latest treatments and most experienced doctors so you are on the right track I am sure.
Robin D.

Anonymous said...

Hello Carlos. Barbara Baron here. I admire your taking the initiative to share your experiences here through the wonder of the internet. I can empathize with all that you are going through as I travelled this journey with my mother and learned a multitude of things regarding life and death. If you recall, she did not pass away from having had cancer.... she is ... to date the only patient that her Dr.'s ever encountered having survived small cell or "oat cell" cancer. I know that her positive outlook and her need "To find out what was around the next corner!" aided in her surviving. She had a need to re-conncect with the church during her journey and she was grateful for your welcoming approach... empathic listening and your being non-judgemental in her having been away for some time. For that gift, my family and I are grateful to you.

I believe in miracles! I hope and pray that you have a similar experience. I'll write again and Merry Christmas to you and to yours~ Barbara