Probably one of the hardest parts of this "journey I didn't want to be on" is the waiting game. When I was first diagnosed, my reaction to waiting is far different from what it is today. For the most part, I have been fortunate to get into different appointments fairly quickly. However, there are times when I have to wait on scans, visits to other specialists, etc. don't happen overnight. It has been almost three years since I found out that I had cancer. The first year I was a mess emotionally if I didn't get in to an appointment right away. That has completely changed. I think it must have to do with acceptance. I now know what I am dealing with and the fact that it is something that there might be answers to and there might not be. As I said before, no matter what happens I want a quality of life so that Dave and I can enjoy living our lives like we have since I met him. In addition, I want to be able to do things with my family and live as full of a life as possible. I mostly feel good. I have a few not so great days here and there with pain but for the most part, it is controllable.
With that being said, I am frustrated that I have had difficulties getting into Virginia Piper for any trials that I might qualify for. I had biopsies done a little over a week ago, so they have the information that they need. I have found that one has to advocate for yourself and I do. I just got off the phone to let Dr. Bhoola's office know that the call I was supposed to get on Friday from Virginia Piper didn't happen. I know how hard they have worked.
Over the weekend, I spoke with a lady in Florida who works for a cancer organization. She does research on trials, where they are happening and the efficacy of them. I was fortunate that my friend, Pam, was able to connect with Dr. Becky. It was a good conversation and she said that what I am doing now is what all the research says can slow the progress of the "bad" stuff down. I haven't had any side effects so that is good. She also said that Arizona is way ahead of other states with trials for this kind of cancer which surprised me--not sure why but Arizona isn't usually ahead of the game in many areas. She also explained why it is hard to get into places and it has to do with staffing. It isn't so much the doctors, but nurses and other support people that there is a real shortage of. I felt really good after talking to her.
I have found out the hard way that I have to be careful what and how I share this "journey" with others. For the most part, everyone has been incredibly supportive in so many ways. I am so lucky to have people check in on me just to see how I am. That means more than I can ever express.
However, there are a few friends who never ask how I am doing and these are good friends. I don't think they are being mean, but more an avoidance of bad news. I remember having a couple of dear friends who fought cancer and lost through the years. I didn't ever want to hear that things weren't going well for them because they meant so much to me. Selfishly, I didn't want to lose them. But I had to put those feelings aside because they were more important than me.
The other one that has blown me away are the few people who aren't supportive of my choices for treatment and even say things. I have learned to just not tell them much--just the superficial stuff. I guess that is my avoidance, but this is a very personal choice. It is also very hurtful. Facing your own mortality is difficult enough without criticism.
We have a hard time making plans very far in advance which mainly has to do with doctor appointments and changes in treatment. It has been interesting when this has happened and people aren't understanding of why we can't make those plans. I know that they are upset when all of a sudden after hearing from them a couple of times a day, I hear nothing and a few other things which are obvious. Oh well, I can't do anything about that but protect myself which I will do.
However, these are few and far between. It just has been difficult because some of these people have been some of my dearest friends through the years. I have learned that everyone handles things differently and I don't and can't change that. Once again, the only thing I can do is take care of myself.
I haven't written much on my blog about things, even the good stuff. I do that with Facebook. But from now on I am going to try to write more here. It is easier to find and hopefully my family will have my words down the road about this "journey I didn't ever want to be on."
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