Plan and prepare for my battle

I was very sick and about to get sicker before I could get better. Time to get my ducks in a row! I had an overwhelming number of tasks to undertake to put myself in a position of hitting this disease as hard as possible. Failure is not an option, I have 16-year-old twin boys, who have special needs. Although they are amazing, they are cookies which need a little more time in the oven. I am not done with my mom job. Plus I love life. I need to live.

I was utterly exhausted and feeling lousy, but I went into turbo mode. I lived part of the week in NW Indiana where my boys go to school, and I have a business. When the kids are at their dad’s, I live in an apartment in Chicago and make art. I planned to permanently relocate to Chicago when the kids finished HS and commute to my job. I had to hustle! I got out of my lease early and moved to an apartment in downtown Chicago a few blocks from the hospital. I wanted to try to make things as easy as possible for treatment and also to be somewhere that would be good for my boys. I went way out on a financial limb an found a great place in the heart of the city. I am CEO of my business so I had to ease myself out of my daily responsibilities and make everything I could cloud based so I could access it anywhere. Fortunately, I have a fantastic team and can complete my reduced workload remotely. I had to prepare my house in Indiana to be shut for an indefinite period. I was told my treatment would take several months followed by a year of restrictions and close monitoring. I could not be in Indiana. I would not be able to care for my children. This was the hardest news I have ever received. I could provide a fun summer full of new experiences for them. I had to get my bills on autopay, and I had to set up estate planning.

I started the first of 6 chemo treatment rounds in April. I have three days of chemo followed by 19 days off. I completed a few rounds of treatment with mixed results. The cancer was out racing the chemo. Then I got an infection and needed to be hospitalized. I only completed one day of my three chemo days. Following this, I got very sick with strep. My throat was constricting making it challenging to eat. A scan of my neck showed lots of new growth. The chemo was not working. I was told my stem cells could no longer be used for my transplant. Using someone else’s white blood cells changes stem cell transplant entirely. The risk of healthy tissue being hurt becomes probable. Common areas attacked are eyes and lungs. Now my best scenario included unknown permanent disabilities. I was now dying. It was critical to find a solution quickly as my throat closed. I stood in Target and burst into tears because they did not have stationary for me to write letters to my sons. If my throat closed too much a tube would not fit down it. My doctor decided to change the chemo. In the meantime, because at least temporary relief was provided I would do one more chemo series with the old drugs while my new plan was developed. This turned out to be an excellent choice. A scan of my whole body the day before I was to start my new chemo drugs showed fantastic improvement. The chemo was working!!! My abdomen was almost completely clear, and my neck showed great improvement!! I have become a possible donor again. I have renewed hope. I am going to beat this!!!