This has been a difficult post for me to finish. I started working on it several weeks ago and found myself struggling to focus on it. In all of my earlier posts, I have tried to recall lessons I learned so I could pass them on for the benefit of anyone who reads my blog. Up until now, I have been writing about the process of dealing with the diagnosis and preparing for treatment. But as I am now transitioning to write about my experience with the actual treatment, my writing has been slow and tentative. I have stopped and started more than a few times. Maybe I am trying to hard to glean the lessons from the first treatment. Or maybe I have just been too busy living in the present to be able to put myself back in that time and place. In any event, forgive me if this post is less clear on lessons and more about how I remember that first day of treatment.
I had read that some patients had found fasting helped to prevent the nausea that often follows chemo treatment. I figured it couldn’t hurt, and it might allow me to recover more easily after the chemo. I maintained the fast I started on Sunday through Tuesday, March 21, 2017, the day of my first chemo and radiation treatment.
I had also read that acupuncture helped some patients cope with whole treatment process and minimize side effects of chemo radiation. So I decided to have my first ever acupuncture session ahead of my treatment. It was a very relaxing experience. However, the acupuncturist told me that most people arrange sessions to deal with specific side effects or pain and discomfort in certain parts of their bodies. This allows the acupuncturist to focus on specific “energy pathways”. For me, it was just part of an overall process. I liked it and would recommend it to anyone.
It’s a funny thing, but fasting and acupuncture gave me a sense of being in control. So did staying on the Ketogenic diet. I told myself: “Cancer was not setting the rules of battle, I was”.
Radiation treatment was scheduled to be five days per week for seven weeks. Chemo would be less frequent. The doctors had decided that I would receive a mega-dose once per week, rather than receiving multiple chemo treatments each week. This would limit the number of days I would be subject to the “chemo flu”. I really liked the idea of fewer chemo sessions.
I had lots of offers from friends to drive me to initial treatment. But Debra wanted to take me on that first day. I was glad she did, but I did not like the fact that she had to go through this experience.
On day 1 of treatment, I felt like it was finally game day. After several weeks of evaluations and preparations, it was time for the real deal. I had no fear or trepidation. I was feeling good, except for some slight discomfort in my throat. But I fully expected that the treatment I was about to begin would almost certainly make me feel a lot worse very soon.
It’s strange feeling just before starting chemo. You think, at least I did, I am about to allow poison to be deliberately put into my bloodstream. You hope that the poison will kill the cancer without doing too much harm to your body, but you know that it’s not going to be pleasant. It’s at that point you begin to truly recognize and personally appreciate the importance of research to develop alternative treatments.
The process of getting chemo is simple and straightforward. Either an IV is started just before each treatment or, in some cases, a patient receives a port that can be used through out the duration of chemo treatments. In my case, a new IV would be started each time. I would soon start to feel like a human pincushion.
At Penn Medicine, there is a strong bias toward IV hydration in conjunction with chemotherapy. IV hydration helps to maintain kidney function. This is important because one of the most serious side effects of chemo can be kidney failure. Not such a great result if you kill the cancer but ruin a kidney.
I had thought that I would only be heading to the chemo treatment room once per week. But I learned on the first day that I would need to come back at least the following day to receive additional IV hydration. This was especially important because my initial chemo regime was to involve a mega dose once per week. Without the additional hydration, the risk of kidney function issues would increase.
During and immediately after chemo treatment the only difference I sensed was a full feeling. Not surprising, given the amount fluid they pumped into me. But I needed to give some back before I was finished. They typically won’t let you leave the chemotherapy center until they confirm that the urinary tract is in working order. Then it was on to radiation treatment.
We scheduled my first radiation treatment to occur shortly after completion of chemo treatment. Unfortunately, we underestimated the time to complete the session, including hydration. It took nearly 4 hours that first day. We had allowed only 3 hours. But because the patient information system is integrated, the coordinators in radiation knew where I was and that I was coming.
I had planned to catch up on my reading during chemo treatment. Best intentions were not realized. I found it hard to concentrate on reading. There were frequent visits from the nurses and lots of checking on the IV. Then there was periodic changing of the IV bag, as I received multiple courses of hydration. But the biggest reason I did not get much reading done was that I found myself dozing off. This was highly unusual for me, because I am not a nap taker. And I typically don’t require a lot of sleep. With the benefit of hindsight, it seems that I was very tired from all the anticipation and preparations. As the chemo treatment was underway, I relaxed and settled into the process.
Radiation treatment involved an entirely different set of procedures. And it was a lot more difficult to relax during it. The radiation treatment center is in the basement of the Perelman Center. There is a very large waiting room that always seems to be busy. There were so many people receiving treatment, it continually amazed me.
After waiting for my name to be called, I walked to a staging area, put my valuables in a locker, and exchanged my clothes for a hospital gown. Then I waited in a small waiting area until a technician escorted me to the actual treatment room. The equipment was similar to a scanner, but seemed larger and more imposing. The technicians had me lay on my back on the treatment platform. Then they would place the custom-made mask over my face. This would then be tightly fastened to the platform so that movement of head was impossible. Next they would align the machine using a laser and a small tattooed dot on my chest. All of this was to ensure I would be in exactly the same position during each of my 35 radiation treatments. Precision was important to focus the radiation on the cancer and minimize damage to surrounding tissue.
The technicians then departed the treatment room and took up their positions in the control room. They spoke to me through the sound system. I communicated to them via hand signals. Then the treatment began. The drone of the machine and periodic knocking sounds competed with the music that was piped into the room. (For the first few treatments, it seems that the technicians had a weakness for Motown, which was fine with me.)
For me, the actual treatment time was about 20 minutes. You feel nothing from the radiation. But you know that it is hard at work wreaking havoc with cancer cells and normal cells alike. My memory of the first session is primarily about having my head firmly attached to the treatment platform. I was glad I had taken up mediation six months earlier, because it gave me tools to stay clam and relaxed in a not so comfortable position. I remember thinking that anyone with claustrophobia would really struggle with this circumstance.
I was happy to have day 1 of treatment in the books. I was looking forward to eating the next day, and to determining whether the fast had helped to stave off nausea that often came after the chemo. That evening I felt good about the overall program and I was confident that I doing everything possible to beat the cancer. I wrote in my journal: “I am doing everything necessary to guarantee the best possible outcome in fighting the cancer.” Most importantly, I knew I had amazing support from my family and friends.