10-14-04 Journal

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28

My heart is heavy as I write today. My friend and fellow cancer patient, Gwen, lost her courageous battle with Ovarian Cancer and entered heaven on Sunday, October 3rd.







Gwen was a beautiful person with a contagious spirit of joy and love for others. Her joy was rooted in a deep Christian faith. Even in her
suffering, Gwen desired to put others ahead of herself. People would visit her in the hospital hoping to give her encouragement and comfort. She
would, however, always turn the attention away from herself and ask visiting friends and family, "How can I pray for you?" Despite her own suffering and fears, Gwen still wanted to love and encourage others.

In an interview done at Gwen's church, she shared an important reminder, "Don't wait until something like this happens to be a witness to your friends and family. I am one hundred percent ready to go, if that is what God really wants, and I totally look forward to that day. It is not a sad thing, however, it is sad leaving your family and friends." I know Gwen's family and friends are very sad that Gwen is gone, but I'm confident Gwen is no longer sad as she enjoys the glory of her heavenly home.

Gwen's passing reminds me again of how precious life is and how important it is to make the most of each and every day and to show love to those who are dearest to you.

In the song Ordinary Life, by Matthew West the lyrics state:

I've been thinking about my life,
Seems like I never take a chance.
Talk about it all the time.
But it's just the same old song and dance.
I wish I'd done that, maybe tomorrow.
Hope to get there some day real soon.
I don't want to talk about it,
I just want my life to shout it.

All right! OK! I'm on my way.
Take me beyond this Ordinary Life
With you I pray, my heart will stay.
Take me beyond this Ordinary Life.

I want to say a special thank you to Linda, a special nurse at my oncology clinic. Linda recently participated in the Portland Marathon to raise money for the Leukemia/Lymphoma society and I was her Honor Patient. I am grateful for her efforts and very proud of her. Way to go Linda!


My oldest son, CJ, is going through his own trial right now. His back has been bothering him and recent tests done by his orthopedic surgeon indicate two cracked bones in his L5 vertebrae. The doctor recommends no competitive sports and/or athletic activity for six months. Needless to say, this is a tough time for CJ. He will not be able to play basketball this season. There is a seventy percent chance that the bones will heal completely during this sixth month rest period. However, if he doesn¹t heal, the injury could give him problems for many years. I am praying hard for CJ.

 

I continue to exercise regularly, and once in a while I get to have some company on my rides. My sister and I have ridden a few rides together
lately. It has been nice to spend time together. My pastor joined me for a ride this past Monday. He's lost one hundred pounds since last March and can ride like the wind. Amazing!

My blood counts continue to be stable and my hematocrit (Red Blood Cell Number divided by my Hemoglobin Number) is slowly increasing, which is good. My hematocrit count was 34.8%, with 36% being low normal. I'm still anemic, but a month ago I was below 30%. I hope to continue the upward trend, but
probably won't make significant jumps until I can come off the immunosuppression drugs, such as Prednisone, FK-506, and MMF.

Unfortunately, I probably won't be coming off my immunosuppression drugs any time soon. Actually, I've had to increase my Prednisone again due to an increase in my Graft Versus Host Disease symptoms. My rash has come back again and I am having difficulty settling it down. My doctor has increased my dose from 50mg every other day to 50mg one day and 30mg the next. I have been on this increase for almost two weeks. Currently my rash continues to stick around, so I may have to increase my dose even more. I am not too happy about this. I am very concerned about the potential long-term problems associated with being on high doses of Prednisone for a long time. However, I just don't have a choice right now so I will just pray the GVHD can be brought under control soon so I can begin reducing the Prednisone dose.

Please lift up the following prayer requests:

-My son, CJ's back, pray for healing so he can resume his activities.

-Britt and his daughter's cancer battles, pray for complete healing in both of them.

-Gwen's family and friends, help them to heal and work through this difficult loss.

-My friend Karen who is also a recovering transplant patient, her Red Blood Cell counts keep dropping, requiring frequent transfusions. Give the doctors wisdom on how to best treat her. Pray for her counts to stabilize.

-Prayer of thanksgiving for the wonderful progress I've made so far and for the strength and courage to face the set backs, such as my GVH rash.

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