Today as I was getting a blood transfusion, I had a glimpse of what I feel like my last days will be like. I was curled up in a recliner and the only noise was coming from the pumping of the machine. In the tiny room Mom was to my left and she was sitting and reading. It was freezing and I was wrapped up in blankets with a hose under the covers that pumped warm air under the blankets. I fell in a deep sleep quickly because of the medicines that they gave me. The nurse woke me up when she came to check my vitals. After she left my mom came over and in a quiet voice said, "Are you ok? Do you want me to get you anything?" After I said no, barely awake, she leaned over and tucked my covers under my legs and pulled them up right under my chin to make sure everything felt just right for me. Then she sat back down quietly and watched for a few more minutes to make sure that I was content and then looked back down at her magazine. There was something about the quietness and about moms soft voice that made me feel safe. Out of nowhere, I started staring at her thinking that is how it would be when I got really really sick. She asked me what was wrong, because I'm sure I was looking funny, and I told her that I was just thinking. I don't think my time is today or tomorrow, but whenever it is, that's how I want it to be.
My last blog was about the surgery that I would have the following day. The doctor removed a tumor that was an inch in diameter along with some of the muscle tissue of the bladder. That was last Wednesday and we had an appointment to see him back the same Friday. I was completely miserable and ready to get in there to see him and move on. He came in and in a calm voice told us that the cancer had spread. The tumor in the bladder tested positive and the muscle tissue around it tested positive. This isn't a new cancer that started in the bladder, it is the same cancer that I started with in 2006. We walked out and my mind was just racing. I wasn't crying. I wasn't mad. I was just emotionless. We talked about it some and I got sad, but Alan always puts a spin on things that for some reason make it ok. A lot of what he says is just guessing but still it makes me feel better. I felt drained all weekend but was anxious to talk to my oncologist on Monday.
There were only about 5 people in his office when we got there. Usually there are close to 50 or 60 and I was so glad because I wanted to get this figured out and get on with it. Alan wasn't able to go so Mom was with me. He came right in and just hugged me. He slumped over on this stool with his hands over his face. He said, "I'm sorry, I just wasn't expecting this." I told him that this time I honestly thought i was going to catch a break. I thought that this one time it would come back negative. As he spoke, I just smiled and suddenly said, "I don't know why I am smiling, I guess because I don't know what else to do." As soon as those words came out of my mouth he said that I was strong and I was wonderful and one of a kind. Immediately my smile turned to sobbing. I said, "I'm fine, I just thought I was doing so good and now this. I didn't want this to be like this and now I am scared." We marked off my options...I've had 6 surgeries without positive results, had radiation, had almost a year of one chemo and an attempt at a pelvic exenteration. What's left? He asked if I would consider going back to MD Anderson or the Mayo Clinic. We chatted about it but I thought he meant for a fresh set of eyes to evaluate the situation again. It wasn't for that, it was for another attempt at the exenteration. My answer was "No, absolutely not." The surgery is no longer an option. Not now, not ever. The cancer spread into my abdomen wall so unless ever single cell of cancer was gone from those places the surgery would be pointless. My biggest fear would be going through all of that and being back where I started. So, after talking all of this over, I decided to stay on the same chemo for 6 months and see if anything changes or gets better. If not, I'm going to switch to different chemo drugs. I asked him what the next organ for the cancer to spread would be and he said probably my intestines. He said that we would try and find a way out of this mess we are in...not to give up on myself.
I am scared to death at this point. I even looked at papers today for a Living Will. It kind of creeped me out. Allie was doing ballet around the living room and I told her how beautiful she was. She came over and put her hands on my bald head and told me that I was the most beautiful mommy that she had ever seen. Then she said, "I love you so much that if anything happened to you, I would be so sad. I love you all the way from the beach to San Fransico...and that's A LOT." It was sad. I put a smile on my face every single day and laugh and play around but I am just dying on the inside!
Please know that the cards and facebook messages make my day. I know that so many times I don't respond but it really means the world to me. Thank you for your continued support and prayers for our family. :)