Saturday, October 15, 2005

sharing the knowledge

So, this is my second head-to-head match with Hodgkin's. During my first bout with Hodgkin's Disease, I failed to start a blog or even a diary. Honestly, I thought about it but you know how things like that go. You think about it once, maybe twice, and then that's it. The thought never gets off the ground. Well, that's how it went in my case. Keeping up a diary is a committment to yourself and whomever else you may wish to read it. I lacked the necessary energy to turn my idea into a reality. In addition, I was very private about my diagnosis then. I shared the news with only a handful of people (friends mostly). So, the idea of a blog, therefore, was definitely out of the question. Although I think I handled the experience quite well overall (despite a brief but unpleasant period of depression towards the end of my treatment), I was very reserved about it. I feared that the more people knew about my problem, the greater the potential for chaos and the potential for people (though with good intentions) to interfere with my right to deal with the illness as I pleased. More importantly, I felt victimized. As a human being, I felt that one of my most basic gifts had been taken from me: self-control. My sense of physical independence had been shaken. My belief that I was in control of my myself and my future was given a nasty blow. My diagnosis with Hodgkin's changed my naivness. I didn't feel in control much any more. A faceless monster was at the helm now. Feeling this way, I felt that the only thing that I had any complete control over was the knowledge of my diagnosis itself. The power to inform rested in my hands and it was this new found knowledge that I defended greatly. I shared my diagnosis with a few people at first and as time progressed, I began telling a few more. However, the difference between now and two years could not have been more stark. Now I'm sharing my experience with everyone.

After learning about my recent relapse, I searched the Internet widely for information about Hodgkin's Disease and the treatment that I'd undergo. In addition to this "nuts and bolts" approach, I looked for personal stories and experiences of patients and survivors of Hodgkin's Disease. To my pleasant surprise I was relieved to find dozens of websites about personal experiences with this illness. What a joy! God bless Al Gore, the father of the Internet. LOL But really, there's so much out there and I'm very fortunate to have found the stories of individuals, who were so willingly to share their experiences with friends and strangers alike.

Since I had battled Hodgkin's once before I knew a good deal about it. Of course, there was a lot I didn't understand too well, so I used the Internet to "flesh out" my knowledge of it. But the illness wasn't my main reason for surfing the Internet for hours, it was my need for information about the new treatment that I'd be receiving. The first go-around I received standard ABVD chemotherapy treatment and radiotherapy (radiation). The treatment this time would be quite different, however. I'm scheduled to receive high-dose chemotherapy and a peripheral blood stell-cell transplant (PBSCT) which is a very serious treatment. I knew about this treatment in name only. After reading about the treatment in medical booklets and on medical websites, I became tired of the clinical jargon. I needed to hear about the personal experiences of people, who had received a PBSCT or a bone marrow transplant (which is very similar), and boy, was I encouraged to find them:

http://www.flex.com.au/~kaye/

http://www.geocities.com/suzstina/hd.htm

http://www.lymphomainfo.net/therapy/transplants/stem-qa.html

http://inspirezone.org/tonycan.htm

There are, however, many more personal blogs and websites of people, who were diagnosed with Hodgkin's and Non-Hodgkin's Disease irrespective of the kind of treatment. I found these websites to be very helpful too. In general, I have felt strengthened by their stories. Their success is linked with my success now, because their strength and to share their experiences has inspired me. Knowing that they had the same illness that I have now and that today they are well and living life has given me an immeasurable boost of strength. I wish to thank them for sharing their personal stories with me and others. I hope that my blog may continue this spirit and help others along the way.

3 Comments:

Comment Blogger Linguist Jake said...

You've got at least one person in your corner. I hope you knock it out even faster this time.

Jake

3:16 PM  
Comment Anonymous Mike said...

I'm sorry to hear of your recurrence but glad you found my site - I hope it is helpful in your battle ahead. Mike - Lymphoma Information Network

5:47 PM  
Comment Blogger Duane said...

Thanks a lot, Mike. You have an awesome website. I hope you continue to keep it going. It has been a tremendous resource.

11:37 AM  

Post a Comment

<< Home