I have wanted to write before now but I have been either too sick or too tired to write. This chemotherapy has been beating up me quite a bit. I manage to see people and take care of some non-physical responsibilities around the house but little more. It seems that the past two months has been about little else other than managing the side effects of the chemo. It's rather boring.
Right now it's 3:30 and I have been here in the infusion room receiving a blood transfusion since 9:30. I was anemic...very, very anemic. A week ago I went to Boston to have my blood drawn and tested at Dana-Farber and to see the Wizard - my oncologist. I had not seen him since I began this Velcade regimen and I was enthusiastically looking forward to seeing him and have him evaluate me and the progress of the chemotherapy. Of course, what I really wanted was for him to tell me I was once again in remission and could stop the velcade. In fact what he did was cut back my steroids from 40 four times each week to 10 twice a week. Given how strong the steroids are that decision was huge. He also reduced the strength of the velcade and gave me another week of drug holiday. So I will feel the effects of the new protocol beginning next week. Hopefully it will be more benign than it has been.
It is now three days later. The transfusion certainly helped restore some of my energy but I think that I had constructed a very different expectation of how I would be afterward. I envisioned myself as feeling much more normal and having the same level of zippitty-do energy that my restless mind thinks I ought to have.
But I don't. I am still very tired and lacking even basic energy most of the time. And my legs now ache all the time. So all I really want to do is sit, and sometimes sleep. And it isn't supposed to be this way. I know because I compare how I am now with how I was before the operation. Or before the chemo. Or before this morning. That's how I should be feeling not this! Anything but this! And so once again, and ever more powerfully, I am confronted with my obstinate resistance to what is. To where I am and what I am. To my present. To the ever present choice of where I am going to rest my focus: the pain and disappointment or the possibility contained in this ever-changing present.
I want my mother!
Right now it's 3:30 and I have been here in the infusion room receiving a blood transfusion since 9:30. I was anemic...very, very anemic. A week ago I went to Boston to have my blood drawn and tested at Dana-Farber and to see the Wizard - my oncologist. I had not seen him since I began this Velcade regimen and I was enthusiastically looking forward to seeing him and have him evaluate me and the progress of the chemotherapy. Of course, what I really wanted was for him to tell me I was once again in remission and could stop the velcade. In fact what he did was cut back my steroids from 40 four times each week to 10 twice a week. Given how strong the steroids are that decision was huge. He also reduced the strength of the velcade and gave me another week of drug holiday. So I will feel the effects of the new protocol beginning next week. Hopefully it will be more benign than it has been.
It is now three days later. The transfusion certainly helped restore some of my energy but I think that I had constructed a very different expectation of how I would be afterward. I envisioned myself as feeling much more normal and having the same level of zippitty-do energy that my restless mind thinks I ought to have.
But I don't. I am still very tired and lacking even basic energy most of the time. And my legs now ache all the time. So all I really want to do is sit, and sometimes sleep. And it isn't supposed to be this way. I know because I compare how I am now with how I was before the operation. Or before the chemo. Or before this morning. That's how I should be feeling not this! Anything but this! And so once again, and ever more powerfully, I am confronted with my obstinate resistance to what is. To where I am and what I am. To my present. To the ever present choice of where I am going to rest my focus: the pain and disappointment or the possibility contained in this ever-changing present.
I want my mother!
1 comment:
Ah, but speaking with you today was such a joy. You sound stronger and more in touch with your magnificent spirit. Remember how much you are surrounded by loving energy. Drink from the elixir of that often. Love you so much, Joyce
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