Friday, October 06, 2006

Heartache and Hope

Today Steven had his blood drawn again. I was going to go along with him, but things worked differently and I quickly told him again the questions I had and he tootled off by himself. I have not yet seen the results, but he said they were all ok - nothing major out of whack and Dr J said all was well.

And they moved his bone marrow biopsy from Vanderbilt in Nashville to Erlanger in Chattanooga! This is SO much easier for him now, especially as his work hours have changed and for all of us too. It eliminates about 6 hours on the road, making a long day longer and makes it all much more cope-able (is there such a word?). Anyway. When I spoke to Steven, he was totally upbeat about this all and said that he is not sure about getting the sedation either - said "it wont be that bad and does not take too long - I think I can do without it". Think they will give ME something?? We are going to arrive there a tad early and will definately discuss the sedation options then again. For Steven, I mean. My sedation will happen later at home with a good cold glass of the good stuff.... no discussion on that one! Hopefully the doctor that did his BMB last time will be the one to do it again - he was good!

I hauled out all my cml papers today and started studying again. I found words in some of the reports that I had never heard of and copied them to a word document to figure out tomorrow or in the near future - I just know that the folks on the support groups are going to get a bunch of questions again soon! I find that I have to relearn a good bit and that understanding all of this is not as close as it was when we left on the road trip. The brain will rev up again and I am sure I will catch up again. In the meantime, I am on a mission - Dr Druker suggested that we get all family members tested as possible bone marrow matches and that is my project for next week, to organise what needs to be done to get this done.

I have found myself very down these last few days. Out on the road I was able to put some of this in a separate compartment in my brain and made a really good attempt at 'everything is normal'. Now its back to that new normal with so many changes. One really big heartbreak in my life is Penny. She is in the final stages of her battle against lung cancer and it just breaks my heart to hear what she and her family is going through. There are so many dimensions to the end of a life here and it must be so tremendously difficult to deal with it all. When we left on the road trip at the end of July, Penny and I were still emailing multiple times a day, instant messaging and exchanging photos, hopes and the excitement of meeting. Now there is such a tremendous hole there and sometimes when someone new signs online - for one tiny moment my heart still hopes its her. I look at her picture on the side of my monitor and my chest chokes up. I miss her and her fun and her mischief and her love and her friendship so much. And that is after such a short time of knowing her. This hurts.

I am also still learning to deal with the many people that now talk to us about their cancer or the cancer in someone they know or love. It really does take so much out of me if I allow myself to feel too deeply, and if I dont, then I find myself not interacting honestly enough and that feels even worse at times. Its a fine line and one I keep falling off as I am sure many others do too. My heart breaks at the pain and loss of so many people, but I really love that people now share their stories with me. Its like being given a part of them when they tell their story.

And then I get an email from someone I dont know. Someone who is also a cancer survivor who donated to the LLS in Steven's honor. What a treasure these emails and donations are. What an incredible treasure these wonderful people are. They are who will help Steven survive, they are who help me keep my sanity. They are who will help us all get closer to beating this disease.

I am really sure that I will get to feeling more 'stable' when I see the blood results for myself, when I have disected them and seen that they really are ok. And then when the BMB and PCR results come in. Those are the big pointers that will tell us where the leukemia is going in Steven. This one is the important 6 month test. Are there any non-important tests when it comes to any disease?

My son looks good. He sounds tired but he should do - he is young, enjoys the weekends, holds a full time job, is doing night classes at college for Computer Aided Design and is now changing to 3rd shift work for the next year to get a higher pay scale. Hats off to him - I am proud of this young man that is moving so determindly ahead, and of Laura for her support, help and love for him.......

Send your thoughts, positive vibes and prayers for an "easy" bmb on Monday - its at 1pm or soon thereafter. I had forgotten the rollercoaster ride these tests create in me. I cannot imagine the feelings inside Steven.

Please say a prayer for Penny and her family. Her blog is being kept up by her husband Michael and it really is worth reading. She is an awesome woman with an incredible family and one heck of a story.


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