Writing two blogs is a bit harder than I thought. Diary of an Illness – A Cancer Nurse Battles a Rare Leukemia, is not really a blog at all. Rather it is a website offering a free e-book. I am putting it up a couple of chapters at a time. Editing the chapters has been a strangely nostalgic experience, one that I plan to write about later. Just the reliving of that life-an-death experience that now seems so long ago.
So right now I am trying to cram a lot of writing into a little time space. I had pledged to try to feature Guest Posts more often. There is so much writing and sharing going on out there. Recently I have been corresponding with a guy who has been diagnosed with my disease. We have talked about the possibility of transplant in his future. Eventually I will get around to writing extensively about that part of my experience in Diary.
But for today I found a nice summary of life post transplant written by Krissy, the wife of a lymphoma survivor. She writes at Sometimes I Think
As I sit here tonight I think about the fact it’s been four years since my husband John had a bone marrow transplant. It was on that day of January 27, 2006, that his life, as well as mine, was changed forever. The BMT did put John in remission from two cancers, but it has also brought John many complications that he has had to learn to live with…
At the end of 1998 John was diagnosed with a blood cancer, Non Hodgkin’s Lymphoma (NHL). In 1999 he received six months of very powerful chemo treatments, which put him into remission.
In 2005, John was diagnosed with another blood cancer, MDS (multidysplastic syndrome), a form of bone marrow cancer. This cancer had been caused by the chemo he had received for the NHL. John’s oncologist informed him that if he didn’t get a bone marrow transplant within a few months, the MDS would become AML (Leukemia).
On January 27, 2006 John received his bone marrow transplant to put the bone marrow cancer into remission and to keep the NHL there also. The BMT was a success — after only three months John was in remission!
The bone marrow transplant was preceded by very strong chemo that completely weakened John’s immune system. The chemo was necessary so that John’s bone marrow would be replaced by his donor’s bone marrow. John waited to see if this would occur, and if he would go into remission. As I stated, it did work.
A bone marrow transplant (BMT) is not without risks. It is not unusual for someone to pass away during the first several months after a BMT. It is also not unusual for a person to die even many years after a BMT if he has complications. But a BMT is often the only thing someone can do to survive a blood cancer. So most people take the chance and go through with it.
After the BMT John had many medical complications. He spent almost the first year — maybe two years — in the hospital, only returning home a few times. He got just about everything a BMT patient could get. I won’t bore anyone with the details but he almost died many times. One day I went to the funeral home and planned his funeral. I told him if he was too tired, he could go to Heaven. I feel bad about it now, but I tried to do the right thing at the time. Perhaps I should have told him to never give up, but I was doing what I thought was right for him.
So right now I’m sitting here with John at my computer. This wasn’t the post I planned to write. I didn’t plan to write all the information I just wrote, but I know I have new readers who don’t know John’s story.
I also want to tell everyone that John is starting his “new life” (post BMT) after four years. I have been excited because things seemed to finally be getting better.
When things get better for BMT patients, after several years, they are told to start living their “New Normal.”
When a BMTer’s life finally begins to be “normal” again — the cancer experience is no longer all encompassing. But a Survivor’s life will never be the same as before, or totally “normal,”because of what he’s been through. There is too much new after the experience of the BMT, and he can never just go back. So his life is called a “New Normal.” And it is suggested to him that along with things he normally did in the past, he choose some new things that will make them happy and keep life worthwhile.
Today I was going to throw a party for John and have his “New Normal Day” in celebration of his 4th anniversary of his BMT. I wanted it to be special. I even got some special things for him. He doesn’t know what they are yet. Because we never got to have the party.
It’s because John has been somewhat sick lately — for about two weeks or so. I won’t go into it all right now, but Dr. Claxton’s nurse asked John today to come up to see Dr. Claxton tomorrow morning at Hershey Medical Center. Just like that — very last minute.
Needless to say, I’m frustrated. I thought John was finally better and was going to start his new life — his “New Normal.” Something even I keep promising him. He’s had so many complications. He only has 1/3 kidney function right now, but he’s tough and he wants to do so many things. He’s been talking about the new things he wants to do the past few days, and now we have to go to Hershey again. We were just there in December…
Anyway, John’s not giving up. He’s still fighting his complications, and fighting them hard. And he’s living his life. I told him last night not to call himself a Survivor but a Thriver. That’s what he’s been all his life!
As he sits next to me, I asked him what he wants to do for his “New Normal.”
“I want to go back to writing,” was his answer.
“What would you like to write?” I asked John.
“My blog has been sitting idle for over a year. I’d like to go back to working in it regularly. Also I think writing a book about my experiences with blood cancer and a BMT would be an interesting project and probably quite rewarding, as well as being helpful to others.”
“Is there anything else you’d like to do in your future?” I asked.
“I’d like to learn to play chess, learn Latin, spend more time on astronomy, fundraise, and speak about blood cancers and bone marrow transplants and my experiences to audiences.”
“Do you ever feel like giving up?” I asked.
“No,” John replied. “Sometimes I feel like I’m not making progress quickly enough. But, uhm, I’ll never give up.”
from: Sometimes I Think