The Wednesday I went to Ann Arbor to start my clinical trial started out as a beautiful day. In fact it was almost too beautiful. I even had time to stop at a Target right when it opened that morning. That NEVER happens! Then on to my appointment to pick up my pills and wait around until I got a bone scan later in the day.
Click, click, click. Check in. Get blood work. Meet with the research trial nurse. Sign papers. Meet my nurse practitioner. Click, click, click. Discuss side effects and how to treat them. Chat casually. Click. Click. Click. Going to be good friends. Have her direct number. Check blood work. Red flag. Wait, wait, wait. Dr. Hayes comes in. Liver numbers are too high. I am now no longer eligible for the study. Stop ride, get off. Talks to me about other rides, but you can’t get on this one now or ever. Dr. Hayes spoke with me at great lengths about what the course could be for me and other clinical trials, but because this trial was a safety trial, it was not safe for me to even start it with my liver numbers being high. Somehow, they had neglected to check out my previous blood work or draw it at some point before we had gotten that far. I still think they are a wonderful doctor team, and I would jump for the opportunity to work with them again, but for now the ride is closed. Hopefully, they will have more rides at a later time.
I held my composure until I reached the elevator, then I cried all the way to the car and then some. When I could, I finally called Josh, and then tried to call my own oncologist to try to get started on our original plan. Well, that was a whole other nightmare, where I had direct access to no one, and was very frustrated that I couldn’t just talk to someone about getting started right away. We had waited long enough at that point. Apparently the doc wanted to think about it and make a change. Problem was that she was going on vacation the next week, so I would not be able to have any input or questions for her until after my treatment had already started. We had already planned our vacation and everything around the clinical trial, and I really wanted it to work out even though we had to change courses. So for whatever reason, I finally get the call that the doctor has chosen for me to go on Taxotere, which is the chemo that I would have been getting with the trial. I am fine with that. Especially the schedule. It is once every three weeks instead of having to go in weekly. Less time at the hospital, and more time at home. Always a good thing in my book. I am going to speak to her about adding Avastin to the combo, as Dr. Hayes mentioned that we could add that if we wanted. It is a very, very expensive drug that costs about $60,000 a year to take. As long as my insurance will cover it, I truly believe that it works well in my case, with minimal side effects.
In between making all the phone calls to my office that day, I took a little trip to Ikea. I was originally supposed to get shot up with radioactive dye and then return later for the bone scan. Since I did not need to take that for the trial, I decided to take my trip to Ikea anyways. I tried to eat some lunch there, but all that I could choke down was a gigantic piece of chocolate cake that they had. I stayed within my set budget pretty much (within a few dollars—good for me J), and got a few things I wanted. It really was good therapy. I also went dream wandering and wrote down all the things I would do if I could refurnish my whole house. That is kind of fun to do and dream.
On the way home, after a rather brisk and unsympathetic call from my nurse, I broke down again. Between the rain and my tears, it was a pretty wet 2 and a half hours home. My friend Lila and I talked too, and she helped me a lot. It was just such a let down, first of all. Second of all, I got just a little taste of what good cancer treatment should look like. Third of all, my own office was doing their best to show how opposite of that they could be that day. I guess when you lose a potential treatment option in cases such as mine, that I feel as if I just lost a bit of time added to my life. It can be a hard pill to swallow.
The good sides to all of this, is that I now do not have to travel so far to get treatment. My doctor is willing to try a single agent chemo instead of a combo, which can have less side effects, and hopefully still the same good results. What we are praying for in my case. I was able to enjoy our lake vacation and Katelyn’s birthday much better by not being on treatment. I am prompted to possibly change doctors to go to the other cancer center in town where I believe they focus more on the patient and their needs. I was originally at Lacks Cancer Center when my doctor was unable to see me there when she adopted a little boy, so I switched back in order to stick with her. But I am at a point where, I need somewhere that will have more of a focus on the whole person like they do at Lacks. I am trying to get in to see one of the doctors there, but he does not have openings until August. We’ll see how that goes.
So for now, I have had my first treatment with Taxotere, and will have another the end of July. It hasn’t been so bad. I was tired and slightly nauseous the first few days, but it wasn’t anything that meds couldn’t help.
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