Let the games begin...
My first chemo treatment was on 9/10/2001. The day before the infameous 9/11 attack. I was seated in a leather recliner and had a platinum based chemical being fed into my veins. My head was swimming and I felt like I was viewing the world through plastic wrap. I had the same treatment the following two days. The second day I was watching huge buildings collapse on TV while spaced out on toxic chemicals.
The treatment was thus with a two week "rest" and then repeat another three days. I had a total of 6 three-day sessions.
After a few weeks I lost my hair (everywhere). For me, that wasn't really a major concern. I joked that I just needed a gold earring.
The staff warned of several side effects: nausea, weight loss, hair loss, weakness, altered taste (difficulty in eating normal foods). Fortunately, the nausea was in control using anti-nausea medication. I was able to eat well and even gained some weight during the whole process. I did feel indescribably terrible. I was weak and rather "spaced out" during the entire process.
After the first 4 rounds of treatment, I had a CT scan of the chest. It revealed that the main tumor had shrunken to 3/4 centimeter (from 1.5 cm) and I was pretty happy. After all, I only had two more three-day sessions to go. I was naively expecting a "cure". I know better now. No treatment can assure a "cure". It is a long term battle with gains and setbacks along the way.
I will never forget the last day of the last chemo treatment. I was so close, I could put up with just about anything. When I was ready to leave the office, one of the nurses said "You must be happy to have this over with". I replied, "No, I now have to face the unknown and that is terrifying".
My next routine visit to the oncologist was another education. She informed me that the tumor was still 3/4 cm and that I should wait a few months to "see what would happen". I was agast. For my studies had taught me that it was imperative to have radiation treatment either concurrent with the chemo or as soon as possible afterwards to maximize survival odds. I politely asked if she would mind if I contacted the radiologist on my own and she didn't mind.
So... the next day I was meeting with the radiologist. He is a wonderful and caring physician. He sat me down and went through each CT scan showing the disease progression and results of the chemo. After two hours or so, he said "You know, 7 out of 8 of the patients I see with your disease are already too advanced to treat with radiation. You are in the 1 and not the 7, I can treat you but you must start tomorrow".
Under the circumstances, I am sure you can imagine what was going through my mind. It was MY decision to seek further treatment. This was a major turning point for me. I had to bypass a trained oncologist in order to try to save my own life. I hadn't ever dreamed of such a situation. I was shocked but also empowered. But it taught me (rather the hard way) to be pro-active and fight for what I needed. It was only the start, I am afraid. There would be more to come.
I did the 5 weeks of daily radiation treatments to my left chest. It was a long process but it went off without a hitch. I responded well and the remainder of the tumor began to dissolve. There were no side effects of note but the lung area can not be radiated again. It was given all it could take. But it worked.
I also opted for full brain radiation. It was recommended since small cell has such a propensity for going to the brain. It is a precaution. Remember, I am being pro-active. I did 3 more weeks of daily radiation. No hair again. It was several months before it started in again. My really thick head of hair is not going to return completely. No big deal. The only downside: No more brain radiation is possible. It is a one-shot deal.
So, it is now almost 18 months since my diagnosis and although I have been through a lot, I am surviving and that is a major success. The only concern I have, my immune system is really suppressed. If I get a hangnail, it is an immediate infection and my finger swells to twice its size overnight. I am profoundly weak and spend two months in bed. My ears are ringing and my sight seems unclear.
Recovery is illusive. I know I need something. I have been more or less dropped. I inquire about some further treatment but I don't really get any help. I start to think about nutrition and alternative treatments. I have run across several ideas in my internet browsing and I feel it might be time to take decisive action again.
My next routine chest CT would change everything, again. I find that there is now a 0.3 cm lesion on my right lung. This is new. It may be a return of something that was hidden during the first x-rays then backed off during the chemo. In any case, this is referred to as a "recurrence". With small-cell, this is usually fatal. Full strength chemo is not an option. I knew that. Only "maintenance" chemo, a few times a week for the miserable duration.
My new oncologist (not the same one doing the chemo) suggests "Wait a few months. If it grows, biopsy and chemo". He didn't mention that it would be "maintenance" chemo, and that I may well be considered terminal. The way I was feeling (weakness and immune problems), why would I be surprised at a recurrence? It was time to take action again.
I decided to try alternative treatments and that is the subject of the next section.