My cancer story:
I was working on the Groton United Church of Christ project in late February 2006, actually it was my birthday that day, and pouring a concrete floor. One of my concrete finishers had the flu, which everyone on the crew ended up catching. I got pretty sick, running a temperature of 103-105 degrees. I ended up going to Convenient Care, the first week of March 2006. They told me I had pneumonia and a chest X-ray showed a mass in my right lung, about the size of your fist. They wouldn’t use the word cancer, but said it was extremely suspicious, and I needed to seek specialized medical attention. I was directed to a pulmonologist, who did a lot of tests, but seemed to me to not be making any progress with a real diagnosis or treatment. . . .
I am 60 years old and was born in Lyons, New York in the same little ten bed hospital that Jim Boeheim was born in. My parents are from northern Cayuga County. I grew up in a farming family. My father bought our farm in Victory, NY, when I was 4-years old and he added other farms and acreage to it, over the years. He wanted to build an empire, and little by little he did. We owned around 1500 acres altogether. My mother was an RN. We were certainly not upper class, but a hard working middle class family. I am the oldest of 5 boys. When I was 2 years old I was already talking, and reading when I was 3. I got straight A’s throughout school and never had much competition. I was valedictorian of my graduating class. I attended a very good university in Baltimore, MD. I had other interests (like drinking and partying) besides my studies, but I did maintain a B average. I left school at the end of my junior year, and went to work in the Biology Dept. as a research assistant for about a year. I got tired of that and the city. I moved back to central NY.
I worked in logging with my step dad and later for my dad on the farm, but realized after awhile that I was not making enough money. A friend offered me a chance to do some construction ironwork, and that’s when I went into the construction industry. I got into high-steel work, building communications towers, radio, TV, cell, microwave, etc. I became a top hand, troubleshooter and pretty quickly a supervisor. I worked for two of the biggest companies in the field, as well as others. I was on the road for about 12 years, living out of a suitcase and carrying my toolboxes. I have built around 175 large towers, and I have left my fingerprints in some places that have never been touched by another person. It was a very dangerous business, but I was getting paid well and enjoyed it. I drank a lot, and partied the way I wanted to when I wasn’t working, after all “I was a towerhand; I was supposed to be crazy.” I wasn’t really very afraid of heights or what I was doing for a living although I was faced with life and death situations on a pretty regular, if not daily basis. As a troubleshooter, I was usually called in on the problems that were difficult or unsolvable.
My drinking got worse, and by 1991 I was in bad shape, mentally and physically from alcoholism. I was losing my mind. I went to a detox center and then a rehab. It took a lot to get me sober I was under some kind of supervised care for close to 4 months. I went to AA. I made the decision that I would do anything to get sober. I questioned my own thinking, so I depended on others to make decisions for me for about 2 years. I didn’t trust my own mind. I did what I was told to do by my sponsor and other old timers in AA. My best thinking had got me where I was, and I knew it couldn’t get me out. In August 2012 it will be my 21st year of sobriety.
I was offered a position, and then a partnership in my step dad’s logging business in 1992, eventually taking over the business when he retired in 1998. Shortly after 9/11, hardwood timber markets collapsed, and I ended up selling off my equipment and liquidating my business. From 1992 to 2005, I lived on Port Bay, a small bay on Lake Ontario, about due north of Ithaca. It is located between Sodus Bay and Fair Haven.
After about 8 months of looking for work, I made the decision to get back into construction. I worked for two companies in Syracuse. It was a 50 mile commute, one way. At the first company, I was hired as a laborer/operator doing excavations and layout, mostly for pollution abatement and petroleum installations. I left there to be a foreman/layout/supervisor for a developer. I worked on two housing developments, laying out and installing roads and utilities. I also oversaw the work on two senior citizen apartment buildings, a small medical center, and a number of commercial buildings.
In January 2005 on layoff, I moved to Lansing, out near Milliken Station, but keeping my place on Port Bay. Looking for local work, I applied for Supt. of DPW, Village of Lansing. I wasn’t hired. I think they thought I wanted a lot more money than I would have taken. I had also applied to McPherson Builders, a commercial builder in Ithaca, and was hired a week after the Village of Lansing rejection. I went to work the first week of March. I was hired as a lead/form carpenter, with the understanding that I would move into a supervisory role.
I am sure you have seen some of my work around Ithaca. Some of the local projects that I worked on for McPherson’s include foundations for Island Health and Fitness, lead/foreman on Lakeview Mental Health Albany St. rebuild, lead/layout/foreman on the Tompkins Trust drive thru on Triphammer, lead/foreman on major structural renovations for the Joe’s Restaurant rebuild, Superintendent Groton United Church of Christ rebuild/renovations/new construction, Superintendent Lansing Community Library rebuild/renovations/new construction, Assistant Superintendent new construction All Saints Catholic Church in Lansing.
As I said at the beginning, there were a lot of tests, but no answers. I got a lot of conflicting info from all the different specialists; some doctors said lung cancer, others, said no cancer. It was a very confusing and frustrating four months for me. To tell the truth, I knew inside that I had lung cancer. During this time I had finished the Groton Church, and was to start the Lansing Library project. I met with my employer in regards to my health, availability, etc. My employer said that we could work around whatever my needs were, and to go ahead on the project.
I was directed to a surgeon, who said the upper lobe of my right lung, where the mass was, should be removed. Surgery was set for the end of June 2006. I worked up until two days before the surgery. The operation was to take a little over two hours. When they opened me up, it was more involved than the x-rays and CT scans had led them to believe. The tumor had grown in around my heart and aorta the main artery out of the heart. The surgeon said he would have just closed me back up, if I hadn’t been in such good shape physically. The decision was made to remove my entire right lung. The operation took 6 and a half to 7 hours. When I came to and was told that my lung was gone, I thought that my life was over. I thought I was going to have to walk around dragging an oxygen tank for what was left of my life. A week later the doctor said that if I maintained a 94% level of oxygen in my blood, then I wouldn’t need oxygen. My other lung would probably expand some into the empty side of my chest. I took the tubes out of my nose and threw them on the floor.
I recuperated from the surgery for a month, had an infusion port put in, and met with my oncologist, to discuss further treatment. Immediately I started adjuvant chemotherapy (cisplatin and navelbeine, four months) which is a pretty tough chemo regime. Adjuvant chemotherapy is supposed to clean up any stray cancer cells that might have gotten away during the surgery. Treatment was weekly and lasted 6 to 8 hours each session. I did about a month of chemo to see if I could handle it, and then went back to work on the library project. I worked four days a week and was treated on Fridays, so I would feel the side effects over the weekend, sometimes I felt queasy on Mondays too.
Two months post chemotherapy, I had a CT scan and they found lesions (tumors) in my right kidney and adrenal gland, the cancer had come back and spread. Biopsies were done and it was confirmed that the lung cancer had metastasized. I was told that I probably had a year to live with treatment and 6-7 months without it: a less than 5% chance of surviving 5 years. A month later another tumor showed up in the other adrenal gland. The library project was done, and I was transferred to All Saints Catholic Church Lansing in February. It was to be my last job. I was done in late April-early May. At the end, I could not stay on my feet for eight hours at a time.
I started a new chemo regime, in February shortly after the new lesions were found. I was put on several different targeted therapies. Some of them were not very good to me. Tarceva caused my skin to break out and bleed, my scalp felt like it was on fire. It’s called the “Tarceva rash”, and is supposedly an indication that the medication is working. It was just too much for me, I tried it at a lower dose, with same results, and it was discontinued. I was also put on Avastin at this time, and after the Tarceva, Alimta was added. Avastin was very new at time and not considered a primary chemotherapy drug, but a secondary drug that might prolong life a short time. There was a response to the treatment, my tumors eventually shrank 30% to 50% over time, and then remained somewhat stable. I lost my appetite and weight. This was in April 2007, and by August I had lost about 50 lbs. Treatment was discontinued. About 9 months later, in 2008, the tumors started to show progression again and I started a new chemo regime of Avastin, combined with six rounds of Taxotere, every three weeks. Then it was just the Avastin, which I have been on basically since December 2008, every three weeks. In a calculated gamble my oncologist felt that the Avastin was responsible for the reduction in the lesions. Avastin is known as a targeted therapy, it’s one of the antiangiogenic drugs. These drugs inhibit growth of blood vessels, the idea being that tumors need a blood supply to “feed” as they use more nutrients than our regular body tissues. Cut off the blood supply and the tumor may be inhibited. A simple Google search shows that while Avastin is somewhat effective, there are quite a number of dangerous side effects. The data on Avastin indicate an average 4 month survival benefit over non-treatment with Avastin for lung cancer, if you were going to die in August you might live to December. Fortunately for me it seems that my cancer has been very responsive to this treatment.
On Labor Day 2010, I was rushed to CMC with acute appendicitis. I spent close to 10 hours in the emergency room, while the surgeons decided what to do with me. An appendectomy was obviously in order however I had received chemo just 6 days before. 42 days off Avastin is recommended before any surgical procedure, if serious problems with wound healing are to be avoided, because of the blood vessel inhibition problem. They weren’t sure that I would even heal if they operated. I was taken to surgery and, my appendix burst about the time they put me on the operating table. I obviously recovered, but it was touch and go, and very painful.
About three weeks after the surgery, I was admitted to the hospital with a BP of 54/37 and dissolved oxygen in my blood of 48%. I was given oxygen and liter after liter of saline to bring the BP back up, and sent home after 3 days. 3 weeks later the same thing happened. I was put in intensive care for 3 days, because of elevated Potassium levels in my blood which could lead cardiac arrest. After another few days in a regular bed, I was sent home again. There was no diagnosis. Another 3 weeks, and the same thing happened again. It took a lot a searching, but it was finally determined that my adrenal glands were so compromised by my cancer that they weren’t working properly. The trauma of the appendicitis and operation had pushed them too far. It’s pretty involved, but the adrenals send out hormones which affect other glands in the endocrine system, which controls among other things the metabolism. They are all interdependent sending hormones back and forth to each other. If one doesn’t send the proper “signal” then the rest of the system breaks down. Adrenal insufficiency is called Addison’s disease; it is very rare (my blood test had to be sent to the Mayo Clinic to confirm the diagnosis). It can occur naturally (primary) or due to some kind of trauma (secondary), which is what I have. I have been taking various steroids as hormone replacements since then, which somewhat take care of this condition. I don’t get very much sleep though, and sometimes my medications get “out of whack.”
A year ago in June of 2011, I started experiencing symptoms of having a stroke. This was actually during a doctor’s appointment. My left arm and leg went numb and were unresponsive. I was given an MRI of the brain and another one 3 days later. Those results showed two objects/lesions in my brain, one in the cerebellum which controls balance and muscle control, and one in the occipital/parietal area of the cerebrum which controls sight and how the eyes work. I was told that these things were small and did not look like either brain tumors or evidence of “bleeds” such as a stroke might create. The doctors didn’t know what they were. We followed with monthly MRI’s and these things were fairly stable as to size, growing and shrinking a little from month to month. In early December I started having vision problems. I could see if I looked straight ahead, but looking up, down, or sideways caused blurring and doubling of my vision. By looking I mean moving my eyes not my head. The range of motion that caused this was very small. I was sent to Radiation oncology, where I was told that nobody thought that these were really brain tumors, they didn’t look like brain tumors, which I guess are basically spherical. These things were more like fried eggs, and brain tumors wouldn’t cause the symptoms that I was experiencing. I was told that my eye problems were most likely “old age degeneration of my vision”. They would send my MRI’s to Roswell Park for further evaluation, do a literature search for similar cases, and that I should go to an eye doctor for a complete examination.
I also started having small issues with my balance around this time. As a tophand I could walk or run 50 or 60 feet of 4 inch beam 200 ft off the ground. Now, I was sometimes having problems maneuvering around my bed or standing in the shower.
The eye doctor could find nothing wrong with my eyes. The extensive eye tests showed things as basically normal. I was told that in fact they were in great shape, and that the reading glasses I use were a normal thing.
The third week of January this year my vision began to deteriorate even more, I was going blind. I had an appointment with my oncologist on Thursday and by Tuesday had decided I was going to tell him that I was going to either Upstate, Strong, or Roswell directly and get something done. I must add that he wasn’t the reason for any delay in this. On Wednesday afternoon, I got a phone call from the radiation oncologist he had finally gotten some info from Roswell Park. They believed that these objects were brain tumors. The reason they looked so different from normal ones is because of the action of the chemotherapy on them over a long period of time because I am such a long term survivor. He wanted me to start treatment immediately. For brain lesions there are three main treatments: stereotactic (gamma knife), whole brain radiation (WBR), or brain surgery. Gamma knife is the preferred treatment. I was given WBR because of the irregularity of the tumors it was felt that too much normal brain tissue would be destroyed by the gamma knife. Trust me I lost enough as it is with the WBR. I was given 14 treatments. I continued chemotherapy through the radiation therapy. The amount of energy in one radiation treatment equals more than a 1000 x-rays. A mask is made with targets on it that they line up with lasers. The mask is bolted to the table during the treatment, and the machine shoots one side of your head and then the other, about 15 to 20 seconds each side.
The radiation causes swelling of the brain and steroids are prescribed to stop that. I had to make changes to my Addison’s medications, because of the strength of the new steroids. All in all it wasn’t too bad until I was tapered off the high dose steroids after treatment was done.
Over the years, I have dealt with quite a bit of pain. Most of it is from the surgeries. Even now, six years after the lung surgery I have pain in that section of my torso because of nerve damage. A couple of different nerve medicines were tried, but to no effect. So, I was given pain pills, Percocet, oxycodone, and eventually stronger opiates like dilaudid and fentanyl. I didn’t have problems with the narcotics, but I did end up sensitized or allergic to them. For about two and a half years now, I have not been able to take any of the opiate drugs without getting violently sick to my stomach; my thinking becomes foggy and confused. I have used Ibuprofen and meditation as my pain relievers during this time. They are not very effective against major pain, kind of like using a squirt gun on a 5 alarm fire. The cancer in the right kidney and adrenal gland has also given me a lot of trouble. I can’t sleep if I lie down the pain is so bad. Combine that with the steroids and a lot of nights I am getting maybe 2 hours sleep and that is sitting up in bed, with my back against the wall.
It seems like most of my problems are on the right side of my body (lung, kidney, adrenal, appendix, even the brain lesions are on the right side). In June my oncologist suggested palliative radiation to the adrenal/kidney area in an attempt to reduce my discomfort. Apparently those lesions were pressing on some nerves in the area and causing some of my pain. I had 10 radiation treatments for that. The last one was July 5, 2012.
The palliative radiation seems to have helped. While I still have the nerve pain in the chest and back, the pain lower down is much reduced. I am getting more sleep at night which is a good thing.
I was told that it would take quite a while for there to be a change with the vision and balance. I have had two MRI’s since the WBR, they don’t show any shrinkage, but there is no progression either. With cancer sometimes that’s all you can hope for. Over the past few weeks I have noticed improvement in my sight, at times. I still have problems looking down, but the rest of the symptoms go away sometimes. This has just recently happened. It comes and goes, but I definitely believe my vision is getting better.
My balance might be better too, I’m not sure. I do know I am not going to try to run any 4 inch beams at any height any time soon.
I get Avastin chemotherapy every three weeks. I get a PET scan about every 3 to 4 months. I get a brain MRI about every 3 months.
Today things are relatively good.
My cancer philosophy, thoughts of a cancer warrior:
Over the years of living with a disease that was supposed to kill me 5 years ago, I have observed, thought about, investigated, lived through, and come to a few opinions on cancer, its treatment, the people who treat it, various strategies of dealing with it, and its affect on us. I call this my cancer philosophy. I don’t credit this with my survival, necessarily, but the knowledge I have gained certainly has given me a better place to stand my ground against this disease.
Cancer is the ultimate betrayal, when our own body turns against itself. Our DNA carries the code that makes “us” who, what and how we are. If this code gets changed somehow, then the things that the DNA produces get changed. Sometimes when these things get changed some part of the body gets out of control. This is called cancer.
How could this happen? Here are just a few things. Well maybe a stray cosmic ray that gets through our atmosphere hits one of your cells. Maybe you ingest some chemical through the food you eat or water that you drink. Maybe your house is “offgassing” other chemicals that were put in the materials it was built with to kill insects or inhibit rot and mold. Maybe you smoke. Maybe you got a real bad sunburn. Maybe it was just chance occurrence that your DNA didn’t put itself back together correctly, while it was busy making the things that make up “you”. When this happens, we call it a mutation. One mutation alone is usually not dangerous, some can even be beneficial. If they are successful over time they are called evolution. Most of what we call cancer is because of 10 to 15 changes (mutations) in the DNA which affect how a cell works. This spreads to neighboring cells, and even other parts of the body. That is basically what cancer is. Our body stops producing “us” and starts producing something else. Because cancer is so wrapped up with our DNA, which is specific to each individual. I believe that in the future, treatment will be “personalized” to the individual. Genetic makeups of both the patient and their cancer will be done, and then a special combination of drugs will be used to treat them. We are already approaching this. I know for lung cancer genetic testing is being done because certain genetic markers have indicated how well a particular drug will work against the cancer. OK, enough of the science, but I do believe that understanding and knowledge are necessary if we are to ask the right questions of our doctors. It is also necessary if we are to weigh their answers to our best advantage as cancer survivors.
Today, one out of two men and one out of three women will develop some kind of cancer in their lifetime. I believe a great part of this is because of so many petrochemicals in our environment, our food, our water, our air, and our houses. My father, the empire builder died of Stage IV prostate and bladder cancer in 1993. It was caused by the various herbicides and insecticides he sprayed on his crops. It was not an easy passing. These same chemicals plus other more dangerous ones are still being used today. What about GMO foods? If we splice a gene from a starfish into the DNA of corn so that it will grow in the presence of a chemical that kills all other vegetation, what happens to us when we eat something made with the high fructose corn syrup from that corn? What is the balance? Food or disease? Pure water to drink or fracking? We as a society have to answer these questions or the cancer statistics above will rise.
I know that my cancer came from my smoking for around 28 years. I quit 8 years before my diagnosis. You know you quit, and you believe that you are safe. I can’t change my past, but I can tell my story so others can change their future. Lung cancer is a real killer. I was told early on that there was no cure for me. It kills more people each year than the next most common cancers combined (colon, breast and prostate). Over 160,000 Americans are expected to die from lung cancer this year (2012), accounting for approximately 28 percent of all cancer deaths. Not all of these people smoked.
I don’t think of myself as a “cancer survivor.” I prefer to call myself a “cancer warrior.” I prefer to be proactive rather than reactive. I don’t make all of the decisions, but I do make the final decision. I have been very fortunate in the quality and expertise of the health care professionals that I have relied on during this journey. With very few exceptions they have all been extremely well informed, professional, and caring. This is not say that mistakes haven’t been made (some of them quite serious), but you know I believe there is a reason why there are erasers on pencils.
My care giver who is my friend and partner has also been responsible in a great many ways in helping me along. She has often sacrificed her time and energy from things that were/are very important to her and her life in order make sure that I am OK. She has done for me when I couldn’t do for myself.
I have to mention that I have an 83 year old mother. She has already lost two of her sons, my brothers, in what can only be called terrible circumstances, not disease or sickness. She has been scared of losing me since I got the diagnosis. It is a challenge to me to give her information on my condition, especially if it is not good. Sometimes it feels like I am walking a tight rope. I basically tell her the truth, with a very slight amount of sugarcoating. What is really hard is when I have told her the truth and sometime later she has forgotten. When the subject comes up again, she sometimes thinks I am hiding things from her.
I have tried to stay as active as possible. I have accomplished a number of projects around the house throughout my time with lung cancer. Some of them might surprise you. My oncologist has always approved. He usually asks me if I have a project going on. He likes to see me busy if possible. I respect his knowledge of medicine, but sometimes I like to get him to thinking about some of the things I am doing. One time, I was building a set of steps for my porch. This wasn’t driving to Lowes and buying some stairs. As a good carpenter I laid my steps out to fit my height and length requirements. When he asked during an office visit if I had any projects going I told him I was building some stairs for my porch. Then I asked if he had ever laid out a set of stairs. That it was more complicated than it might seem to be at first look. A quizzical look came over his face at first, and then a little smile. Obviously, stair building isn’t oncology or even rocket science, but he got it. I actually prefer that my oncologist concerns himself with oncology.
My relationship with him has changed over the years. I believe that even though they have care and concern about their patients with serious cancers oncologists tend to be more reserved with some one that is going to die in six months to a year than they are with someone who has better chance of living a full life. I think it would be only natural, to not get too close. I remember when my cancer had spread to my kidney. The question was whether it was kidney cancer or metastasized lung cancer in the kidney. I asked what the difference would be. He was almost giddy in his reply that if it was kidney cancer, he could cure it. After I had survived a little over 2 years, I felt that there was a change a softening an opening up in our relationship. Now I don’t need my doctor to be my best friend or anything, but I do think it helps if I feel more a partner in this thing that we are going through. I don’t like being talked down to. By the way, I do have a pretty good scientific background, well versed in chemistry and microbiology. I don’t let on or talk about it much, but it helps me sometimes in asking the right questions.
Positive attitude. I have heard that I have a positive attitude and that is what has helped me live this long. Well I do have a positive attitude. I think that is one of the things that make me who I am, but I am not too sure that positive thoughts can cure a tumor in my brain. I think positive thoughts can help me deal with it, but not so sure of how much therapeutic value there is. I was at the first meeting of the Living with Cancer as a Chronic Disease, Pat’s Group at CRC and a woman there was talking about this, how thinking positive thoughts could affect a cure. I spoke up and said “I am not so sure that you can think your way out of cancer, but I do believe you can think yourself into cancer.” I don’t know. I might have offended her because she’s never been back, but she had a job and was there on her lunch break so maybe that was it. I often think back to when I was in rehab at the Dick VanDyke Alcohol Treatment Center over at Willard. One of the clients kept maintaining that his positive attitude and thoughts would keep him from going back to his addiction when he left treatment. That was all he needed he said. The counselor posed him this question. Suppose he had diarrhea, from a stomach bug. Could he go a whole day on just positive thinking without using the facilities? What would his pants look like? It made a lot of sense to me.
As I have said I have another disease that wants to kill me, alcoholism and addiction. I was in bad shape. The lessons that I learned crawling out of that hole have been a tremendous help in dealing with this new disease that wants to kill me. For me acceptance is the biggest help. After I was first diagnosed there was short time when I was somewhat manic about it, understandable when you’ve been told you have a year to live. You know that old TV plot device that used to show up on the tube. All my life I wondered about it and what it would feel like to be told that. Really I am not making this up. Here I was in that very same position, fortunately I was given some of the tools about 15 years before that I needed to deal with it. I accept that I have lung cancer and that it’s going to kill me one these days. I don’t fight that aspect of it. I am locked in this battle with cancer and I need all my energy to fight the cancer. If I start beating myself up over it or refusing to accept it, then I am using up resources that should be directed at the cancer not myself or some other outside entity. I very rarely think about my cancer or that I even have it. That is not denial, but that basically I am trusting of everything that is presently being done on my behalf. Of course this kind of thinking is hard to come by in the first few days after you hear those three words. “You have cancer.” I do have to say that it can be pretty scary the first time they bolt your head to the table for WBR.
I know above that I have written about chemicals in our diet, but I am basically a meat and potatoes kind of guy. I really haven’t changed my diet much. Once in a while, some organic food, but that’s about it. I was told to drink a lot of water. From about my second year until I got sick with the Addison’s, I drank a lot of soda, like 1 to 2 liters of orange or root beer a day. It’s a wonder I didn’t “diabetize” myself. Nowadays I drink mostly water.
About three years ago, I started feeling the need to talk with others about my cancer and my life. I had reached the point where it seemed that my friends were not really interested or else uncomfortable discussing it. It had gotten stale and old or too macabre to them. I didn’t like being in the role of the “cancer guy” so I usually stayed away from parties and social engagements. You know you see the skeletal bald guy on the other side of the room; I didn’t like being that guy. I know that probably 90% of this is my own problem, but you can’t live in a vacuum with this disease. Your social contacts have to be more than your oncologist and chemo nurses. I was looking for something. I even went so far as to put an ad in the Craigslist personals Strictly Platonic section saying I had cancer and was looking for someone to talk with over a cup of coffee or something like that, just some socialization and discussion about all kinds of things, certainly not all cancer all the time. A few replies, but nothing that ever resulted in a face to face over a real cup of coffee. Then one day as I was leaving the doctor’s office taped to the door was a notice about the Men’s Cancer Breakfast at the Royal Court Restaurant on Friday mornings at 8AM that was just being formed by the CRC. I made a point to go to the very next one, and I have been going ever since. My first breakfast was either the second or third meeting of the group, there were six of us there seated at a round table in the corner. The group has long outgrown that table with 14 to 20 men showing up now. It is just what I was looking for. The conversation runs the gamut of just about anything you can imagine. It is certainly not all cancer all the time, unless it needs to be. Along the way we have lost a few members to their disease, and we miss them. It seems though a new face shows up at least once a month.
I also attend Pat’s Group, Living with Cancer as a Chronic Disease, which meets the first and third Thursdays of the month at the CRC from noon to 1:30PM. A luncheon is served. This group is oriented to the long term survivor and most of us there have an ongoing battle with a serious cancer. The perspective I get there helps me in a different way than the other group. I really appreciate that the CRC is able to provide these opportunities for me.
I have had an ongoing love-hate relationship with the drug that seems to be keeping me alive. It has extended my life far longer than was expected. It has given me a reasonable quality of life in that it doesn’t make me sick or nauseous. On the other hand it has driven my blood pressure quite high, complicated the appendix surgery, is quite possibly responsible for the appendicitis in the first place, and I guess you could say delayed the WBR seven months for the brain mets. Think about what taking the various chemotherapies over the last five years does to one’s body and chemical makeup. These are all very dangerous drugs they aren’t given out for just any disease or sold over the counter at the drugstore. I am certainly not complaining, but such is the plight of the long term survivor.
Cancer makes you old. I don’t recognize myself in the mirror anymore.
At one of the first Men’s Cancer Breakfasts that I attended I was asked if there was anything that I could attribute my beating the odds to. I thought a while, and then replied. While I am not a religious person, in fact you could call me an atheist or agnostic, I might allow that building a church or two might not be such a bad thing to do.
Finally, I’m not doing too bad for a broke down old towerhand with one lung and two brain tumors.
7/23/12
