This document is an attempt on my part to provide people with my view of the history of my past almost four and a half years. During this period I have been dealing with brain cancer and a collection of related drug induced side effects. I hope that it can provide useful information for those who read it. I know it will aid me by providing me with an opportunity to vent some of my frustration.
I suspect that I am more fortunate than many in that I started with an extremely supportive group of family and friends. Despite the fact that we are distributed across the country, when either good or bad things happen I can count on support from all my family, close friends and coworkers. There is something about having such strong positive support from family and friends that has made the past four and a half years seem somewhat surreal in nature. As I write this, it is hard for me to believe that it has been such a long time.
Like everyone else who has battled, fought, or struggled against some form of cancer, the process and history is often an interesting part of the experience. I hope that my reactions to various events and the reactions of others are an important message from this story. This experience has involved and stressed a large number of individuals. From my sister and her family, my brother and his family, my parents, wife, children and coworkers, no one has been unaffected. Of course, the immediate family of my sons and wife have been most completely affected and without my wife's help and inspiration I would never have reached today's status.
<p our="" family="" has="" held="" together="" through="" the="" surprisingly="" difficult="" process="" of="" multiple="" trips="" to="" dozens="" doctors,="" numerous="" mri's="" and="" other="" scans="" three="" surgeries.="" no="" one="" experienced="" more="" or="" been="" supportive="" than="" my="" wife.="" it="" is="" often="" hard="" for="" me="" believe="" accept="" how="" extensive="" her="" support="" been.="" after="" four="" a="" half="" years="" courage,="" far="" too="" easy="" take="" daily="" help="" granted.="" wife="" me,="" started="" november="" day="" in="" 1991="" when="" i="" had="" first="" "out="" body="" experience",="" relatively="" mild="" seizure.="" remember="" feeling="" faint="" while="" helping="" prepare="" dinner.="" sat="" down="" at="" dinner="" table="" put="" head="" on="" arm="" rest.="" next="" thing="" remember,="" called="" 911="" because="" simply="" would="" not="" respond="" anything="" she="" said="" did.="" we="" some="" basic="" cpr="" training="" from="" boy="" scouts="" cub="" scouts.="" knew="" wasn't="" having="" heart="" attack="" hadn't="" stopped="" breathing.="" but="" seizure="" disorder="" part="" list.="" this="" gentle="" was="" be="" harbinger="" many="" exciting="" events="" that="" were="" yet="" follow.
I have been accused of being far too positive about events that occur in my life. Calling that first seizure a "harbinger of exciting events" is one of those examples. I admit to being the type of person who is always looking for the good in things and not very interested in the bad. Some of that positive attitude stems from my natural belief that life is a positive experience. I don't see much reason to be negative about things that I can't affect. I try to operate with a few simple rules about the goodness of life.
Looking back, it seems like it took my wife and me a surprisingly long time while working with our local neurologist to develop an understanding that the problem with which we were dealing was a brain tumor on the left side of my brain that was potentially cancerous and likely to affect the performance of my reasoning and speech production. Meanwhile, because of the slow rate of tumor growth, we reasoned that we were dealing with simple astrocytoma or anaplastic astrocytoma. I was fortunate enough to have the time to search for just the right surgeon and/or tumor removal team. With help from my sister, my wife and I started visiting brain tumor groups in the Los Angeles area and settled on a group at the University of Southern California that had a minimally invasive approach for surgical biopsy.
In February of 1992, I had my first stereotactic biopsy at USC and found myself less than excited to discover that we were dealing with anaplastic astrocytoma. I have to admit that my usual positive approach to the world was shaken. My first reaction was something like "I'm dying." It took a day or so and time with my wife and family before I developed my second reaction which was closer to "What comes next."
What came next was radiation treatment and two years of relative quiet while MRI's showed no change and I worked at the day to day process of day to day. In my free time, I went to work on better understanding me and my disease.
I also went to work on trying to understanding what part of my brain had been changed. I felt that I needed to understand where gaps in my cognitive functionality had developed. I wanted to be able to deal with those holes and organize my activities so that I operated as normally as possible. I took advantage of help from my sister's access to research libraries and used her help in developing pointers to a number of research papers. I read as much as I could of the literature that was available about anaplastic astrocytoma. I worked to develop both long term and short term expectations on both the disease development and the cure potential.
After two years of unchanged MRI's, I had my first dramatically changed MRI in June of 1994. A second biopsy revealed that the change in the MRI was due to radiation necrosis, not recurrent tumor. Radiation necrosis is not an unexpected reaction to the radiation treatment that had killed the tumor. We started the process of low dosage steroid treatment to manage the necrotic effect of pressure within the brain. Past history had indicated that after a relatively short period of steroid treatment, the necrosis would resolve.
We waited patiently for a year. Each MRI showed no change. Although the radiation necrosis was not resolving, there was apparently no recurrent tumor. As I have said, you have to be a positivist. However, after nine months, I became convinced and concerned that my intellectual functionality was increasingly degrading. I could not read nearly as well and I was increasingly losing my ability to read and write research papers. Extensive testing with a neuropsychologist confirmed my suspicions.
A third biopsy was performed in April of 1995. Although the tissue collected from this third biopsy suggested the presence of cancerous activity, there was no definite evidence of that fact and the tissue could not be grown. The inability to grow the tissue suggested that there was no tumor activity. Meanwhile, it was clear that we needed to increase the steroid dosage because the radiation necrosis was not being managed with lower dosages of steroids. We increased the steroid dose to 24 milligrams of decadron daily and after a short period, reduced it to 18 milligrams daily. I was also referred to an oncologist.
It's a bit of a surprise how quickly you can collect the set of physicians whose job it is to help you deal with all the small and large pieces of the problem. The neurologist who manages my seizure medication is distinct from the oncologist who is waiting for a good reason to start a chemotherapy regimen. There are follow-ups with the neurosurgeon, the radiation oncologist, the opthamologist and my regular internist.
We started working with the oncologist because it had become clear that non-surgical cancer cures would lie in the use of chemotherapy. Fortunately or unfortunately, the lack of evidence for recurrent tumor suggested that chemotherapy was not indicated at this time. After a long conversation with our oncologist and based on my understanding of some of the literature that we had read, we decided to try Tamoxifen. It is apparently a low risk anticancer approach that has been working well for breast cancer and seemed like it might be worth a try.
As is often the case, the cure can be worse than the disease and one side effect is the development of blood clots. Clotting in the legs hit just as we were passing the magic dosage level of 200 milligrams. The 200 milligrams per day level is the dose needed to get high enough drug concentrations across the blood brain barrier. Two weeks of hospitalization and Heparin were needed while the Tamoxifen slowly left my system. With the support of people at the company, I kept on working by using email and being frequently visited. The good news was that I was able to work fairly well once I had my portable computer set up and attached to the phone. It was like working from a remote office. This experience also helped me recognize the depth of understanding that I had built up regarding the details of my disease. I started to recognize the lack of understanding that was available from many of the physicians with whom we were working. Not many people have tried high dosage Tamoxifen therapy.
It is now almost a year later. I am living at 18 milligrams of decadron daily and continuing to search for information about the use of long term high dose steroids. After almost a year of high dose steroids, I am beginning to learn the side effects and constraints of that drug in addition to the side effects and constraints of all the seizure control drugs that are part of my daily drug regimen. The loss of energy and inability to climb stairs hit relatively quickly in the high dosage regimen. The development of hardening lenses in my eyes from steroid cataracts has been a bit of a surprise. It is yet another of those items with which one learns to deal. The weight gain and water retention becomes a frustration and one does get tired of buying larger clothes despite exercise programs and careful diet. I often find myself complaining about the fact that I have not heard my voice in over a year. Everyone else assures me that I still sound just like I always have. I have heard recordings of my voice before and after. However, the steroid induced changes in the shape of my mouth and face have changed the way my voice sounds to me. The positive news is that I wake up every morning and go to work every day and I am fortunate that I enjoy where I work and what I do. The steady, though slow gain of weight over the past year and my increasing inability to climb stairs, run, or jog leaves me especially frustrated. As do my visits to various physician offices. I have to say that one of the most frustrating parts of my visits to various doctors is the treatment that I get from the nurses. It is interesting how easy it is to separate and classify their performance. There are the more modern and younger nurses who are more business like and are interested in you, but recognize that you are there to receive information and exchange status. They recognize that you would not be there if it were not for this disease against which you are fighting. Then there are those who seem to think that what you want to hear is how good you are looking. It is as though they feel that by reassuring you about your physical appearance they have contributed to your well being or sense of well being. What they don't seem to understand is that I do not need or want their reassurance regarding my apparent sense of well being. I have been on steroids for two years now, I weigh 20 pounds more than I would like, my face doesn't look like it did, my body doesn't come close to the form it had even 1 year ago, I have lost most of the hair on my legs as a reaction to the Tamoxifen, I have had to transition to trifocals because the steroid cataracts have affected my vision, I have difficulty getting up off benches and soft chairs, and yet, when I walk into the doctor's office the nurse tells me how good I look. Sometimes I want to scream at her, "No I don't! I look horrible! If I looked good, I wouldn't be here!!" I sometimes wonder if it is my fault for generally operating in too positive a manner. Perhaps if I always entered with a frown instead of a smile then I would receive a different response. I have thought about dressing up using extensive moulage and walking in with a cane. I suspect I would still be told how good I look.
I have changed the way I think about my relationship between work and home. I try not to travel and be away from my family as much as was once my habit. I try to manage my home time so that I have more time to watch my kids grow up and so that I have the time to do things with all the members of my family. I try to enjoy life's moments that I would otherwise have let slip through my fingers.
My greatest frustration remains my current existence. There seems to be no solution to the radiation necrosis dilemma. For the foreseeable future it is likely that I will not be able to reduce the level of steroids without agreeing to a surgical answer to the existing necrotic effect. Further, there is increasingly little expectation that there will ever be a reduction of the necrotic effect on its own. Lastly, the likelihood seems extremely low that I will maintain my current level of intellectual performance in the face of the surgery required to remove the necrotic tissue.
So, what does one do? Well, as long as I get supportive positive interactions with my physicians and from my family, we continue to fight for improvement and to watch with the hope that things will improve. When I get aggressive, noncommunicative interactions, I respond with the same negative interactions with which I have been treated.
I am a scientist with a scientific bent and so I spend my time as effectively and productively as possible. Finally, I have little time to waste and no time to waste with individuals who are not willing to work positively with me. I demand the best from all those with whom I work. I demand the best from myself. I am like everyone else who is working on solving the problems of living with cancer and the results of its treatment. I fight the daily process of living the best life I can and enjoying as much of that life as I can. I am always looking for fun and excitement in everything I do. If it is not fun then it is not an important part of life.