Down, down, down….

Experiencing such joy this past week has brought me to tears. Although I am still in full quarantine and not allowed among the party crowd, there is something to be said for watching my nephew, Max and Alex run back and forth smiling and laughing. Walking side by side with Chloe, my niece hearing about all her acrobatic dance moves while she sings Will.i.am “Scream and Shout”, I do remember what this joy felt like. Hearing Sofia my niece sing brought goose bumps and such overwhelming feelings of pride and I realized for the first time that I am more present now than ever before. Enjoying dinner with my family, laughing with my sister, Sue and brother in law Caspar, I am filled with happiness that the replay of the day is the best medicine I have received this week. Whether it was the balancing of spoons on the nose or talks about make up, I love every minute, every second. I also realized that last year at this time, I was consumed by horrible pain and unable to fully enjoy these moments. Of course, last year I thought I was enjoying the moments with my family, but now with the tumor marker going down it is a whole new appreciation. When your body is not working double time while consumed with the toxicity and pain of cancer, you can fully enjoy the moment. Who knew? Now my old self would say, “carpe diem”, but my new self says, “Avoid the germs and say no to hospitalization from pneumonia or any other germs”. Last year at this time, the fluid buildup from cancer caused me pain and brought me the inability to sleep (only sitting up) and eat. I cannot explain how much I am enjoying the moment now compared to last year. I had no idea how awful I felt at the time because I was enjoying living just as much as today. It is different today because with less cancer I can sleep on my side, eat more than a tablespoon of food, spend less time in the bathroom, and really be present to listen, look, feel the joy of every moment of my day. Now there is the hair loss that I am dealing with once again which now proves to be more of an inconvenience than anything. I could go with Alex’s sharpie suggestion for the eyebrows, but with artistic skills being one of my weaknesses, I really don’t trust myself.

 

During this time of now not being consumed in pain while living in the moment, I have learned once again a valuable lesson. I have begun to ask for help realizing that the energy required to accomplish the simplest things is not worth the energy I need to save for enjoying my moments with my family. I have lost touch with friends and most importantly my family in struggling every day to cope with living with cancer, deal with chemo side effects, and living in pain. This isn’t going to happen again. So, I know I may have lost touch during this crazy ride, but I may be contacting you and asking for your help big and small. I appreciate you riding this ride with me and I cannot explain why I didn’t ask for more help. The typical after surgery meal delivery is what is normally done, but I am living with cancer and having weekly chemo. The needs of my family and my own needs are different in struggling to live with cancer. I realized that my needs are much more specific and even strange. I realized the need to ask for help is critical to my ongoing survival. Now that I am more present in the moment of the day, I must seize those moments and ask for help with the mundane. Yes, you know how my old self used to hate asking for help because I wanted to do it all and my new self, felt as if I was burdening those I care about with my feelings or needs which seem so silly to ask for help. All this is thrown out the window now. I am still walking in uncharted territory for me, so work with me in discovering all those little things I need help with. I know it may be difficult to understand what is going on now. I am thankful to be alive, thankful my tumor marker is going down, and thankful to be living with cancer.

 

Having my tumor marker go down, I realized that I needed to read the expert report. This is the report provided by “experts” across the country evaluating my case and giving their opinion. I received the report about a month ago and I read the first page and handed it to Jim telling him to hide this from me. This report had a cover sheet telling me that I had few options and my cancer will continue to be resistant. The report said the chemo would stop working, cancer would grow, and I should consider stopping chemo. Palliative care is what I am doing now as I know I have no standard options. We are in uncharted territory.  I refuse to accept this death sentence. I know and understand there is no cure for my cancer and the likelihood of it returning is high. I also know a lot about myself and my body. These experts are looking at me on paper and making a decision based on facts provided in the report. I took a deep breath and looked at the specifics. They were missing two key items which are all the “rage” in chemo treatment: Votrient and low dose chemo. These were both presented at the big ASCO conference in June. Either they quickly reviewed my case or didn’t give it the attention it deserved or really could not think outside the box. I did review their other suggestions which we had already talked to my UCLA doc about. I decided there is something to be said for meeting a doc face to face. There is also something to be said for keeping your hope, your motivation, and your purpose for living. These experts made no mention of my husband, son, family, or friends. These are pieces of me which motivate me to face another chemo each week. My drive and desire to stay alive cannot be measured or even comprehended unless you know me. I think back to the expert at Cedars who shook his head in disbelief when he read and counted the number of chemo treatments, reviewed my current blood work, and looked at my face. He acknowledged that I did not look like a cancer patient. Now, there are days without make up when the gray pastiness creeps out of the makeup, but I have convinced myself even in my worse days that I am a wife, mom, sister, daughter, and a friend and not just a cancer patient.

 

As a new friend and fellow warrior said, “you have a powerful name and I can see you are riding the ‘F-in’ wave and refusing to give up.” This is true and we are more than just what reads on a paper. I am lucky to have a team of doctors, nurses, and scientists who understand me as a person instead of just a cancer patient. So, I will continue to enjoy these new moments as much as I can. I cannot think about the tomorrows, but only today. I will enjoy the sunshine (still with a mask in crowds) and my countdown to freedom from pneumonia continues. ENJOY THE SUMMER FUN!