Monday, June 14, 2010

Radiation Treatments - 6/11/10

It's amazing how much I remembered of the radiation office in the cancer treatment center that I attend. It's been seven years since my last radiation treatment. At the time, I had five weeks of treatment, every day, Monday through Friday, totaling 25 treatments. I came away with badly burned skin that healed over several weeks and a good prognosis that we had killed off any remaining cancer cells in the left side of my chest. I didn't think I would ever have to come back, but here I was again.

The radiation office is in the building behind my oncologist's office and is in the basement. The first thing you notice is that there are no windows. And when I say it's in the basement, it's really buried. Even with lighting, it still seems to be dark and hidden away from the rest of the world. You take the elevator from the main entrance, go down a level, and then you follow the many, many directional signs to the radiation office. It's a maze. Without the signs, one would surely end up in another place and time.

The beautiful, shiny hardwood floor is my first memory. I instantly want that floor in my home, but I imagine that the upkeep would be a nightmare. The place had not changed since I'd been gone, but I'm pretty sure that the receptionist that greeted me was not the same one that was here seven years ago. She asked me several questions and then gave me several forms to fill out. In the mean time, every few minutes, radiation technicians came into the waiting room to get patients for their treatments. My second memory was that the wait was never long. A treatment session lasted less than five minutes. It took longer for a person to take off and put back on their clothes than it did to get the treatment.

It's Thursday and I will talk with my radiologist. We will set up a time to get my markings. Afterwards, I will start my treatments. The radiologist that had done my treatments before had retired and so I am assigned to another one. I am relieved. I don't have warm and fuzzy memories of him.

Four weeks into my radiation treatments for the breast cancer seven years ago, I developed blood clots in my left lung that kept me in the hospital for five days. I had never been hospitalized during the six months of chemotherapy that I had received, and I had only been in the hospital for three days when I had my mastectomy. Needless to say, I was not a happy camper that the least invasive and least toxic procedure had put a stop to everything. When the doctor told me that I had more than likely developed the clots from over-radiation, I was down right angry. When the blood clots were finally dissolved and I was released from the hospital, the first thing I did was go for a very long and very hard run to clear my mind. Next, I went to my office and researched blood clots from over-radiation. It was possible but rarely happened. There was about a 2% incident rate. Unfortunately, I was unlucky and had fallen into that 2%. I printed off papers and was ready to have an intelligent discussion with the radiologist on the following day, when I would resume the radiation treatments. I wanted and needed an explanation of why my radiation treatments had almost killed me.

On that ill-fated day, when the radiologist's assistant called me back to see the radiologist, she asked about my hospitalization. I had missed three treatments that week. While we were talking, the radiologist came into the room. His assistant said that I was the third patient of theirs that week who had developed clots. What??? The previous week the radiation machine had been recalibrated and . . . . She never finished her thoughts, because the radiologist interrupted her with a stern look. She had over-stepped her boundaries and had said too much. A blind person could see that. The doctor who had treated me for the clots had been correct. I had been over-radiated and two other patients had suffered the same consequences as I had.

We didn't discuss what the assistant had just blurted out. He asked me about my hospitalization and I told my story again, relating that the doctor who had treated me for the clots thought that I had been over-radiated. I handed my research papers to him. Instead of even glancing at the papers, he told me that I couldn't trust anything that I had found on the Internet. I protested and showed him citations from the British Medical Journal. He wouldn't even entertain the concept that I had blood clots from over-radiation. He had been doing this for 20 plus years and had never had one incidence of blood clots in his patients. He said that it was from the chemotherapy. But I had completed chemotherapy four weeks ago and prior to starting the radiation. He told me that blood clots were more common in males. I had one breast remaining, but I didn't think that qualified me as a male. He also told me that blood clots were more common in people that were overweight and immobile. Thanks to the successful "diet" of chemotherapy, I weighed 120 pounds at the time, and I was back to running every day. I didn't fall into those categories either. Every explanation that the radiologist threw at me, I rejected, and he was getting angrier with me by the minute. I was expecting an apology for taking away five days of my life, and I wanted a path forward to prevent this from happening again. Had that been too much to ask? He didn't apologize. Instead, I had been reprimanded. His path forward was to end the radiation treatments at five weeks instead of the initial six weeks that had been discussed previously. He jokingly brushed me off by stating that all I needed to do now was to find a left-handed boyfriend. His remark was cruel and insensitive. And it was the assistant's turn to give him a stern look. I couldn't believe that I had just been dismissed like I was a child. The intelligent discussion that I had hoped for had deteriorated to the painful reminder that I had one remaining breast on the right side of body. At the time, I had no rebuttal, and I quickly lost the little confidence I had to question my doctor about what was going on with my body under his care.

I tried to shake off that horrible memory. When the radiologist's assistant called me from the waiting room, she remembered me immediately. I remembered her, too. She had been the only voice of reason in that awkward situation. If it had not been for her honesty, I would not have understood what had happened to me years ago. Whether she remembered that particular incident will remain a question. At this point, we needed to concentrate on what was happening presently.

She asked me a few follow-up questions about the forms that I had just filled out. My old records were stored off-site, so it was like I was a new patient. If needed, they would access them for additional information. After she left, a few minutes later a nurse practitioner entered the room. I did not remember her from the past, and as she shook my hand and studied my face, she plainly stated that she was trying to remember if she'd worked with me before. Seven years is a long time, and we came to the quiet conclusion that this would be a new relationship.

The nurse practitioner gathered information that she needed and wrote me a prescription for more pain relievers. Some times there's a delayed reaction with radiation to the bone. I probably wouldn't feel any relief until after the treatments, and she wanted me to be comfortable in the mean time. She told me to double my dose of OxyContin and to use the Hydrocodone for breakthrough pain. It seems like everyone wanted me off of the Advil, the only thing that seemed to help, even though it was for short periods of time. I'd been on the Hydrocodone, and like OxyContin, it really didn't help. I suppose that taking both drugs together could possibly offer some relief, or alternatively, send me into LaLa Land. I feel like a drug addict.

Next was a visit with my new radiologist. I liked him right away. He had been studying my scans and had a good idea of how to alleviate some of the pain. There was nothing he could do about the tumors in my spine to relieve the back pain, but there were several sites in my pelvic bone that he could radiate to relieve the pain in the hip and possibly the groin. I am willing to try anything at this point. He added that radiation was very successful in relieving bone pain. It would only require two weeks of treatment, every day, Monday through Friday, for a total of 10 treatments. I would come back the next day for my markings.

On Friday, the radiology technician left the room as I pulled down my pants and underwear to the middle of my thighs, laid down on the table, and covered up with the sheet that he had given me. I told him I was ready, and he came back into the room. He positioned me on the table, binding my feet with a flexible and padded oval device. He then handed me another one for my hands so that my arms were stable across my chest. He adjusted the simulator to measure and mark my hips. All I had to do was lie still. Easy enough. He would leave the room, adjust the computer based on my scans, and come back and adjust the simulator. This routine went back and forth until he was satisfied that measurements were precise. When he was done, his assistant came in to actually measure with a ruler certain points on my hip, and they began to make markings ("X" and "L") on my body with a purple pen. I had one X on the right hip (for alignment only) and three X's on my left hip. Two L's were also on the left hip. He then covered the X's with clear, plastic tape. The L's would wash off in the shower, but the X's remained because of the tape. This all took about 45 minutes. He said if I had time to stay, he could check the measurements and program the radiation machine within 30 minutes and I could have my first treatment today. I had plenty of time, and it would save me a trip down the line. He led me back into the waiting room.

As I sat in the waiting room, I picked up a copy of "Why We Walk" about the 3-day walks for breast cancer. The walks totaled 60 miles and took place in several different cities across the country. I instantly wondered if there were participants who ran the event. Twenty miles a day for 3 days wouldn't be that bad. I've run 60 miles or more in one day on several different occasions. As I read some of the stories, I played with the idea of doing it, but raising $2,300 would require a lot of work. And I thought about a recent thread on the Breast Cancer Mets List Serv ( Many thought that events such as the 3-day and the Race for the Cure 5K Races were not for us. They were tired of the pink ribbons and the accolades for only those diagnosed with primary breast cancer who had become "survivors". The advances in primary breast cancer have been phenomenal over the past few years, but the research has not been as successful for those with metastasized breast cancer because it's so hard to treat it completely. What works for "Mets" to the liver, doesn't necessarily work for "Mets" to the lungs, which in turn doesn't work for "Mets" to the bones. Those with "Mets" are continuing to die way too soon and are only "surviving". The thread emphasized that no one seemed to care that some of us had no light at the end of the tunnel and would never be "survivors." And those that knew about us condemned us to death while we were still here fighting this disease. We live for years with Mets, trying different treatments and having periods of regression, stabilization, and progression before it finally takes us out for the last count. I didn't agree with all of the points raised in the thread, but I did understand the frustration. When I was told that I had metastasized breast cancer in 2008, I found very little literature for Mets, but all kinds of books exist for primary breast cancer. I have one book geared towards Mets, "Advanced Breast Cancer: Living with Metastatic Disease", and it's been a struggle to get through it. It seems to focus on (I hate to say this) dying with dignity. It's not exactly what I was expecting. I wanted discussions about different treatments, clinical trials, natural solutions, nutritional suggestions, exercise options, and mental imagery. The book is very vague on all of these topics. The Breast Cancer Mets List Serv has been the most helpful informational source that I have found. These are real people dealing with the same things that I am dealing with on a day-to-day basis. There's an archive that is very helpful when investigating specific topics. The depressing thing is to follow one List member's threads over several years of posting only to come to an abrupt end of posts from that person. Usually, the reason why there are no more posts from that person is because that person passed away. I have yet to find out a person no longer posts to the List because that person found a treatment that cured them.

With my reading and thoughts, the half-hour passed quickly, and I was called back to have my first of 10 radiation treatments. Two female radiology technicians would be assisting me today. Each day I would be asked to verify my name, my birth date, and what part of my body will receive treatment on that day. I noticed a scan of my pelvic bone on the computer. How did they know where to aim the radiation beams? I expected to see clear holes were the cancer was eating through the bone or at least different colored spots where the Zometa was helping to rebuild new bone. Instead, it looked like any other pictures of a pelvic bone that I'd seen on the Internet. It looked healthy. It appeared strong and pain free. And yet, if that was the case, I wouldn't be here.

I answered all three questions correctly, and I was then ushered into the radiation room. Again I was asked to lie down, to pull down my pants and underwear, and to cover myself with a sheet that they provided me. The oval bands were placed on my feet and into my hands as before. The technicians went about their business of setting the machine and lining up my markings. They left the room to radiate the front of my hip. A couple of minutes later they came in to rotate the machine (all done with a remote control device) and then they left again. The machine radiated the back of my hip, and a couple of minutes later, the technicians said I was done. I fixed my clothes, wished them a good weekend, and told them I would see them on Monday.

Over the next 2 weeks, I have a regular appointment at 11:00 a.m. Monday through Friday. I can use my lunch break to take the short 10-minute drive to the radiology office, have my radiation in 5 minutes, and then come back to work. The schedule is perfect for me.

I am hopeful. If I can get to a pain free state of being, I think I will be more mentally and physically capable of focusing my energy on the work ahead. I have to catch up with my work in the office. I have to concentrate more on my fitness and get back to running. And, of course, I have to deal with my cancer. I am willing. I am able. I am ready. By a divine grace, I am here.