I have learned one thing over the past couple of weeks. I am definitely not cut out to be a patient.... As a part of this clinical trial I have had to have several different tests and scans lately. I have realized how odd this is for me. I don't feel sick, yet I'm at the hospital surrounded by sick people, being treated like a sick person and it just doesn't feel right. It's actually making me feel sick just being there. I havn't had to be at the hospital for a few days and am feeling more like myself because of it. It's like you have to give up part of your identity when you are there just to preserve it. I come home feeling bruised and less than a person then I did before I went. I went for a CT last week and found myself getting so frustrated because I was being treated like a nobody - just another body. As I was getting prepared for the scan the technician's cell phone rang and he picked it up chatting to his friend the entire time he was prepping me. Then when it was time to inject the contrast and the IV broke apart I wound up with a mix of blood and contrast all over me. He of course blamed the nurse who put it in for not making sure it was tight. I kept thinking to myself, "Maybe if you were paying attention to what you were doing...." Of course I didn't say anything about it. Just thanked them and left. It's really nice when they can pay attention to you, what they are doing and make you feel comfortable. Unfortunately, this is not always the case. I imagine it is difficult to see each person seperately after having one person after another go through your care but we are individuals and I deserve to be treated as one. Ok, that's my rant! Glad that the majority of my health care professionals have been considerate, caring and good at their jobs.
I did have my brain MRI also this past week and unfortunately the results were not what we had hoped for. I have two new brain tumours which means that I am excluded from the clinical trial which I was hoping to get in to. We were obviously upset with this news but am relieved that there are other options. I was in to see my doctor the following day and he gave me my presciption which I will be starting on Wednesday. I am looking at it like this..... I may have gotten the same drug on the trial anyway since it was split half and half, I don't like being at the hospital being poked and prodded all the time which would have happened on the trial regularly, and it may be safer to be on the approved drug since it has been well tested. It is what it is and so we move on with the options that we have in front of us. And again, I do have to express that I am very happy to have any options and I don't take this for granted for a second. I just sometimes wish that my options were more concrete.
Part of the reason that we were holding off starting chemo is because the flu has been running through our house for the past week. We need to make sure that everyone is healthy before I start. I am being scheduled for Gamma Knife again in early April. I don't have to stop the chemo while going for gamma so this is a relief. The delay with the gamma is because the machine is going to be down for the month of March. Hopefully the chemo will help out with these tumours anyway since it is thought that it passes through the blood/brain barrier. Who knows? Maybe by the time I go in for gamma they will already be gone! One can only hope. I am very anxious and excited to see my next set of scans to see how this drug is going to respond.
So, although I am starting chemo on Wednesday I am still going ahead and flying to Vancouver for a retreat through the Callanish Society for people with metastatic cancer. Good thing my medication is in pill form so I don't have to spend hours in the hospital. I had registered for this a while ago and despite these latest findings think that now it is even more important for me to go. I get alot out of these retreats and need this time to work through everything that is going on both in my mind and body. So I'm very grateful that things came together and I am able to go. I believe so much that when things are meant to happen they do! I am hoping that the side effects which we are expecting take some time to come up and that I'm feeling Ok while I'm away.
When all of this first happened last month, my mom and sisters decided that a night away with the girls was in order. We booked into the Fort Gary Hotel for a pajama party. OMG! What a fun night! We spent the day at the spa getting pampered, enjoyed a delicous dinner in our suite, and I actually had the best sleep I have had in a long time that night (could have been the champagne). It was so nice to put everything aside and just laugh and relax. It was quite the snow storm outside and as we looked out the window it felt like we were in our own snowglobe. So beautiful! The staff were so accomodating and made this time so special for us! Definitely my new favorite hotel and spa!! Thanks Mom and Dad!!!
Another lesson learned is that sometimes things are out of our hands. We can't control alot of what happens to us so we make the best of it and carry on. I know that I can wish all I want that things are different but they are what they are. Sometimes I think back to life without cancer and I envy that time. I wish that I could have it back - not just for myself but for my whole family. This has really changed us. Worry, grief, sadness and anger are all with us every day. It's trying to find the laughter, the love, the happiness, and the joy through it all that is rewarding and so worth it. Cancer can not take that away from us, no matter how hard it tries. And so we carry on loving and laughing!