I think to myself all the time, “you can’t make this stuff”….
- Being told you have metastasized cancer at 39 less than a week before Christmas. (Dec 2016)
- Finding out you have cancer with a 12 month old, 3 year old, and a college Freshman. (Dec 2016)
- Being told your biopsy is inconclusive and they have no idea where cancer began and/or what type of cancer. (Unknown Type: Dec 2016-Aug 2018; Unknown Primary: Dec 2016-Dec 2018)
- Having 3 oncologists during your first month of treatment. (Jan/Feb 2017)
- Being told surgery isn’t an option because the cancer is too far spread in liver and/or most will not do liver surgery if liver is not the primary cancer. (Feb/March 2017)
- Coming to the understanding that a liver transplant is not likely for a metastatic cancer patient but available to those who drink themselves into liver failure can get one. (Feb/March 2017)
- Starting “empirical treatment” that has a 10-50% chance of working because after a month of tests, you can’t wait any longer to start treatment. (February 2017)
- Being told there are really no other options than treatment for life, that remission is unlikely, and statistically you have a year to live. (March 2017)
- Finding a cancer pioneer, who believes and knocking the cancer down after 7 months of treatment which was totally unexpected. (February 2017)
- Finding out that your oncologist, your believer, your miracle worker, was killed in a car crash after a lifetime treating patients (March 2018)
And this was just part of the first 14 months…
I have never felt more broken than I did when I realized that there were very few options for me to fight this cancer. It was almost three months into chemotherapy while being treated for a cancer that could not be identified despite two biopsies that we made the trip to MD Anderson, the #1 cancer hospital in the US, for a second opinion. We thoroughly expected that MD Anderson would have answers for us. We had high expectations.
The trip did not go as expected. I have never been more broken than that day in late March at MD Anderson when the doctor who we had hoped and anticipated to give us more treatment options and answers, told us that there were not many other options, that I had a highly aggressive disease (way different from that of “famous” pancreatic patients like Steve Jobs), that no surgeon known would operate on a liver that is 60-80% compromised, and that I would have some form of treatment for life. That statistically someone with my disease would live 1 year but that the longer I lived the better chances I had.
My husband has described this visit as destructive to us and it was. We always believed we could tackle anything and here we were being told we couldn’t. We felt helpless and severely broken. All we could think about was the cancer. All I could think about was that my then one year old son would never even remember me or know me. I was fixated on the pain that my family would go through and the fact that I would not be with them. I fixated on the fact that my kids would end up with another Mom and my husband another wife. I didn’t get any new solutions or answers, I was given a sentence.
My reaction although broken was to call my doctor’s nurse at Moffitt. In tears, I explained I didn’t want to wait 2 weeks for my next chemo appointment and that I wanted to start next week. I explained what happened in Houston and she set up my appointments for the next week. I am so lucky that she understood my need to get chemo started quickly.
I was so scared for my appointment with Dr. Williams. Fearful that he would agree completely with MD Anderson. It was April 7, 2017, My dear friend and old math teacher, drove me down for the doctors visit and chemo. My husband had to work because he had taken a week off to go with me to Houston. We were sitting in the exam room when Dr. Williams walked in. He pulled a chair up and sat facing me and said “Why are you here?” He knew I had went to MD Anderson and was back a week early to see him. In tears, reading from my notes to help me keep it together, I explained what I had been told, and that I needed to start treatment quickly because I needed to fight this because I need to be here. I told him I needed a miracle. He looked me in the eye, and told me “I Believe In Miracles”. He did not discount anything I had been told in Houston but he was hopeful. As he walked out, he patted me on the shoulder and said “you are in the right place”.
Dr. Williams never discussed time lines with me and/or the mortality of the cancer, he encouraged me to fight it. He was a man of few words. I knew if we had to discuss the end we would and that if I needed to prepare my family he would tell me. His belief kept me focused and fighting.
Dr. Williams is the reason I am still here. He found a chemo that worked when we didn’t even know what kind of cancer I had. He guided me in knocking a cancer down that no one ever expected me to. He BELIEVED when many wouldn’t.
I wish I had more time with Dr. Williams and knew him better. He was killed in a car accident on his way to Moffitt in March 2017. I did not know until after he was gone, that my doctor was a pioneer in the cancer world. He was the first Black medical resident at Tampa General Hospital and worked at Moffitt since it opened in 1986.
https://www.legacy.com/obituaries/tampabaytimes/obituary.aspx?n=charles-canaan-williams&pid=188652765&fhid=16800 .
I was lucky that Dr. Williams chose to treat me. As I sit in the chemo chair, I like to think that he is looking down on me, helping me fight, and cheering me on.
I am here, because he believed in me and he believed in miracles.
https://moffitt.org/about-moffitt/remembering-dr-charles-williams/
