Thursday, December 23, 2010

Knowledge is Power

When diagnosed with an illness the obvious thing to do is to hit the information super-highway (internet) to gather as much information as possible. Everything I have read in cancer paraphernalia as well as on the Internet says that you need to become an "expert" on your disease. With the definition of expert being well-versed enough to understand the vocabulary including potential treatment regimens and related procedures.

And for the most part the Internet is a great resource. But here are just a couple of the negatives:

1. Information can be out-dated or irrelevant. For example, the Internet says I can't have cut flowers or a Christmas tree. My oncology nurse said that this is old information, and only relevant to certain types of cancers.

2. The Internet can scare you worse than creepy clowns. My whole bone marrow freak-out wouldn't have happened if the many horror stories I was able to find had not described every excruciating detail. Additionally, when doing research with limited information, you can very easily jump to wrong conclusions. For example, before I knew what type of lymphoma I had, I would look up the prognosis of the various forms and play the "how much anxiety CAN we create for no reason?" game.

3. One person's experience is not necessarily going to be the same for another person. There are ALOT of worse case scenarios online. Often the people having the routine/ideal experience aren't taking the time to write about it.

In recent days I am finding the online cancer community to be a great source of information and moral support. One particular site I frequent is

This site provides a blogging forum for cancer survivors. What is cool is that I can specifically go to posts written by people with the exact same form of cancer that are receiving the same type of chemotherapy.

Case-in-point: Lately, I have been having some minor insomnia issues. Through this forum, I was able to reach out to others on my same chemotherapy regimen. Many experience this, and for some of the people it is temporary. Also, many of them offered recommendations.

I was also able to read on various blogs that the two-week mark is the most likely time for me to start losing my hair. Though this varies from person-to-person. My two week mark is Christmas Eve. That should make things interesting!

A few people have chronicled each of their chemotherapy treatments, including what side effects increased as well as what ones diminished over the entire course of the treatment. This information is critical to someone like me who is only one treatment in with many to go.

On another note - tomorrow brings my weekly blood work. Hoping for normal. Off to try to sleep now...

- Posted using BlogPress from my iPad

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