April 25th - I'm still here

Sorry for the apparent abandonment of my blog. I didn't mean to wait so long to post, I just haven't had much to say. Or maybe it's more, I didn't know how to say it.

I began the clinical trial chemo drug in March, shortly after my release from the transplant. My health has been up and down ever since. A couple of weeks after my first treatment I was hospitalized for vomiting and nausea. Just a couple of weeks ago, I was again hospitalized, this time with 105.6 degree fever. They put me on a bunch of antibiotics and in a couple of days the fever disappeared.

Since beginning the trial chemo at the beginning of March, my treatments have been delayed twice due to a low white blood cell count. Because of the decline in my count and some symptoms (headaches and nausea), it is believed I am getting the actual drug and not the placebo. So with the delays, I only have 2 treatments under my belt.

When we went for my my last treatment, my regular doctor was out so we saw the head doctor of the Lymphoma Unit. He is also the doctor in charge of the clinical trial that I am on. It was nice to finally meet him. He did deliver some sobering news.

My regular doctor is a huge optimist to say the least. He is always talking up the positives and we are used to that bedside manner. This doctor is more of a realist and he basically said though we should try to be optimistic, we shouldn't even think about a cure at this point. He also said that he wouldn't even consider me to be in remission until a clean scan at the 18 month post-transplant point.

Also, this doctor indicated that my CT scan done in March still showed some "stuff" in the areas of the tumors. This was news to me. My regular doctor never shared those results with me (as I said, always the optimist). I asked if it was possible that the stuff was only inflammation or scar tissue and he said it was possible. But I got the impression he didn't think that was likely. He made it sound like this is something I will fight my entire life (with no promise that it will be a long one). My husband and I left the office that day feeling very deflated.

I am scheduled to go back for my next chemo May 3rd (if my white blood cells cooperate).

On the positive side, I have gotten permission to return to work next week. I will start back part time at first and ease into it. I still am not myself and I am told that it really takes 6 months to a year to feel "normal" again. Plus the side effect from the trial chemo and all the antibiotics I am on takes its toll. But I'm excited to get back to work. And my pocketbook certainly looks forward to it too.

I guess right now I feel like I'm on an emotional roller coaster again. I try to remember to appreciate everyday. But at the same time it is hard to do that with the thought that those days could be so numbered. I also feel like all the dark days that I have been through have hardened me. I also fear all the dark days that are most likely to come.