I know I have been delayed with a post, but I wanted to get started with radiation and have a few days under my belt before writing.
Radiation started 8 days ago. So far there has been more issues with the equipment and scheduling than I have had with the treatments. Most of the time it takes longer to position me and set up the equipment than it does to get the radiation. Using the biaffine cream right after treatment has worked so far. I have gotten a bit pink by the end of the day, and if I put it on before bed, the skin is clear by the morning. I am almost half way there, and so far, so good. My energy level is good, and I am still walking every day.
Last Tuesday I had another Herceptin infusion. One of my Lions came with me for company and we were in and out in 30 minutes – easy peasy. It was nice to have company for the morning. We spent the time solving the worlds problems. If only people would listen to us, LOL.
I also had an appointment with the oncologist Tuesday morning and was a bit cranky and moody with him. I did not think anything of it at the time. By Saturday I started to feel off and every thought in my head was negative and sad. Sunday, I found myself being hyper sensitive to any criticism – I had the urge to cry. It is like a switch was turned. I have not had these feelings or thoughts at any other point in this journey. I do not feel like myself. I had a happy hour Friday night and a pool party on Saturday afternoon I went to. In both cases I did not engage with people like normal or come away feeling energized – I am a complete extrovert, I get my energy from being around people. I will be asking the doctor if this is part of getting past the Taxol, or a reaction to the accumulation of the Herceptin.
Last Sunday I had my first piano lesson in 34 years and played the instrument for real for the first time in about 20 years. The earie part is that the lesson was in the same house, at the same piano as 34 years ago. It was a wonderful experience, and has inspired me to play again, and even practice. Will wonders never cease.
For my lions, I want you to pay close attention to people in your life. I can tell you that what I have been feeling has not been showing to the people that I have been talking to and engaging with over the last week. So, check in with people you love and make sure they are ok. And yes, you can check in with me too. But I will be fine. I am taking steps to work with the doctor and explore alternative treatments to alleviate the symptoms that do not require more drugs.
The CSA dinners will start up again the beginning of August. Stay tuned for emails to alert you to sign up. It is wonderful to have you all supporting me.
I am now about 6 weeks out from the Taxol infusions and feeling better every day. I am still struggling with fluid and continuing to do the manual lymphatic drainage exercises twice a day. The Neuropathy is tremendously better, and my stamina is back. I go to sleep later at night like normal and wake up in the morning at my normal hour – around 6:30am. I am still walking every day and will likely start upper body exercises without weight or resistance this week.
Today was the planning session for radiation. I had previously read on the Mayo Clinic website a summary of what to expect – it was spot on. My Radiologist was present, shared what to expect from the process and allowed me to ask any questions I had. The ones I forgot I was able to ask the nurses and got full answers. I am going to be doing the radiation at the new Asplundh Cancer Pavilion, which is beautiful. I start the radiation next Wednesday. It will be 4 weeks – 20 sessions. And from what I understand another 2 weeks of recovery. I am told that it is fatiguing, but not as bad as chemo. So, I will continue with my schedule of water, food exercise and sleep. Hopefully I sail thru this.
As for preparation for radiation, I found the advice rather interesting. My Doctor did not have any specific cream he recommended, and the nurses sort of believed that the creams do not really help they just make the patients feel better. Given how sensitive I am, I have decided to take the advice of a choir friend and use something that is made by J&J called Biafine. It is specifically for burn and radiation patients. Another friend that just completed her radiation treatments wishes she had prepared her skin by using the cream a few days in advance. I am taking that advice too. Stay tuned as to how this all works out.
I am still getting the CSA share boxes of veggies, so will be inviting people for dinner this week. I have to say getting the weekly box of veggies has been helpful in motivating me to cook, be creative with food prep, and trying new things. I have also decided to do another 8 weeks of the CSA this summer. I will not need to shop for vegetables until late September.