Tuesday, October 11, 2011

No News and the Same News

Two weeks ago we had a visit with our local retina specialist about Kellen's eye. After visiting him before, visiting the best of the best specialist in Philadelphia, and visiting the infectious disease doctor, the consensus was that the lesion behind Kellen's eye was not cancer and it was not any of the long list of infections or parasites that can be detected by blood work. They all agreed that the next step was to try a round of steroids in hopes that would shrink the lesion behind the eye.

Today the doctor found that has been no change in the lesion or the pocket of fluid from it behind the eye. There had been no significant change in Kellen's vision either. We decided to continue the steroids another two weeks, and check again. At that point, if there has been no change, he will wean off the steroids, but other than that there is no planned course of action. The doctor mentioned freezing the lesion, but also said it is in a very difficult spot for that procedure.

Many of you have also asked how Tim is doing. They got the cancer with the surgeries, and then interferon chemo was recommended. The first month was intense, and I'm so glad it is over. He is now on a lower dose treatment that he is supposed to take for a year. It makes him feel weak and tired, kind of like what you feel like with the flu.

So far we've seen a pattern of him feeling pretty decent for a week or two of treatments and then gradually he feels weaker and weaker. Then his weekly blood work will come back showing his white cell count to be too low for treatments. He'll take a week off, begin to feel better, and then start the cycle again.

It does seem like he is more tolerant of the treatments as he goes on. The down part of the cycle takes longer to come, but it still does. It is very frustrating to us both.

And I wonder if it is really the best course of action. I've always had an interest in alternative/natural medicines and treatments, but never took the time to become more educated. When Tim got his diagnosis we were in crisis mode, and there was no time or energy to research or consider other treatments. We just did what we were told.

A ways into the chemo we started watching documentaries like Food Matters, and reading books about the Gerson Therapy. We started discussing these alternatives. Then we got Kellen's news, and were back in crisis mode again just treading water. 

(Anyway, those two paragraphs were a complete rabbit trail, but this is my blog and rabbit trails are allowed.)

So, we really don't know what is going on with Kellen's eye. The good news is it isn't getting any worse. The bad news is it isn't getting any better, and no one seems to know how to fix it. Tim is doing about the same. The bad news is he still feels sick a lot of the time. The good news is it takes him longer to feel really bad.

Personally, I'm tired of doctors, tired of medicines, tired of not having answers, or fixes. I am just tired.


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  2. It can seem like a long road when it comes to cancer. Just keep walking it. Once step at a time. Oh, and have you checked out the Cancer Treatment of Americas'? I heard they do holistic treatments sometimes.