Thursday, March 13, 2008

Grinding It Out

This post is, most likely, going to lack the long-view required to stay above the day to day of this disease and my stumble towards recovery. I think that the combination of a stultifying winter and a humbling set of physical challenges have exacted their toll on me in the last few weeks. I find myself struggling to hold up the blessings that have propelled me through the first third of this journey.

Sometimes it's simply too exhausting to stay above the day to day grind of coping with the medication, trips to the clinic, endless testing, a body that seems to decompose in some way every day and the shear volume of stuff (physical and medical) you have to track. All this would be challenging for a well person. Quite frankly, for someone like me I'm uncomfortable being so self focused for so long. However, taking my eye off that ball put me back in the hospital this month - so there is no percentage in letting up monitoring or ignoring ones physical changes. 

While this month hasn't been the most dangerous I've had since last September, I believe it's been the most challenging emotionally, punctuated with nagging physical ailments that makes me feel I'm regressing not progressing. It began when I got dehydrated from both a conflict in my medications and personal difficulty keeping my fluid intake at a proper level. The deeper I got into a cycle of dehydration, the less aware I became of my condition. I was simply "off " in my thinking, memory and energy as the poison levels rose in my body. Once admitted to the hospital they hydrated me 24-hours a day for 5-days to get my biochemistry in line. 
While there they did all the invasive testing possible to determine if I was disease free or that my condition was caused by some return of the dendritic cell tumor. The great news is that I'm completely disease free and that's what I should be focusing on as a measure of how I'm doing. This last week has seen my blood work get back in line and the further engraftment of my sister's marrow. All of this make the oncology team smile- and I get the impression that they were cautiously optimistic going into this and the results are beyond their expectations. 
So, while I'm not feeling very good and battling several physical conditions that are part of the healing process, I am disease free on day 105 from my transplant. And that's really the point of all this isn't it.

Sorry for the long delay in getting this out. Hope this finds all well and looking forward to a spring that is struggling to emerge.



Kim said...

Hi Arnie,
Good to hear from you again--but you know that regardless, we are all thinking and keeping track of you here at SGDP. Also glad to hear that you are out of the hospital. Home is always a very good place to be. Will be cheering for you and my best friend Leslie next month at the St. Anthony’s Triathlon in St. Petersburg. She raised over $10K in one month for The Leukemia and Lymphoma Society--and this year, we celebrate her 10th year of being Hodgkin’s-free. I think you are right about what the focus should be--being cancer-free. And taking it one step, and one day at a time. Stay strong.
Love you--miss you,

Rich said...

Hey bud,

Tell MJ she can ignore my email now that you have posted. I'm starting to really miss your presence, so keep plugging away. I took a golf lesson from Kim the other day, and he is trying to tackle the elephant in my swing - the outside in demon. Not cool, but if we can fix it, I ought to really improve until the next thing goes wrong.

Remember how much you are loved when the road gets tough like last month. You are gonna be a poster child for U of C before this is all over.

Anonymous said...

Hi Arnie!

I am so glad to read your new post. Sorry to hear that this long battle is taking it's toll emotionally and physically. It is an exhausting journey to be sure. Your perseverance continues to be an example for all of us. I am amazed by you everyday and continue to send you love and healing thoughts and prayers.