If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.
Monday, February 23, 2009
My father had a saying whenever something unusual happened or something a little unpleasant occurred. He would say “It’s all part of the cruise” meaning it was part of the plan, it was meant to happen. I’ve been hearing that in my mind often lately. I’ve been depressed lately. It seems that with each chemo treatment the side effects last a little longer. Today it is a week since my last treatment began and I still am very low on energy and stamina. It used to last only a few days. I think I’m also starting to experience “chemo brain”, a phenomenon described by many cancer patients. It includes absent mindedness, dementia, lack of concentration and other brain failures. Recent studies have validated this with scientific explanation. In my case I’ve been making dumb mistakes at work and doing things like driving past my exit on the Parkway while looking at it and thinking “wow, that came up fast”. I even programmed the wrong address into my GPS and then let it take me in a totally different direction than I knew I should be going, thinking to myself, “well it’s probably taking me on the back roads”. So between the lack of energy, the chemo brain mimicking senility and other side effects like dry hands and fragile nails that limit my dexterity I feel like an old man. Then I start to think that may be appropriate since I’m probably close to the end of my life. I told you it was depressing. But then today I was reading a magazine and came across a photo of a piece of art. It was part of a collection of spiritual art. It said “This is part of his plan for me”. That’s the spiritual version of “It’s all part of the cruise”. Interesting that these two fathers of mine have both sent me a similar message at this time. I often wonder if some of the symptoms I experience are effects of the chemo or effects of the disease. When you are living with cancer every little pain or discomfort you feel makes you think the disease is spreading; not a pleasant thought. On the other hand, if the symptoms are from the chemo it means that they are cumulating and sooner or later I may not be able to tolerate them; also an unpleasant thought. Either way, these trials are out of my control. I take comfort in knowing that they are part of God’s plan for me. And of course it’s all part of the cruise. Does anyone know where the ship is going?
Thursday, February 12, 2009
As you may recall from the very first blog entry I said I wanted to make Trrrr laugh again. Well, things are going fairly well now so we have many good, relaxing times when we forget about our problems and just enjoy life and each other. And Trrrr is laughing more. Earlier this week President Obama was holding a news conference. I climbed up on my soap box and started preaching to Trrrr about how all politicians were the same and how this country was self destructing. I said “I’m glad I’ll be checking out soon and I won’t have to watch it.” Terry responded “If you don’t shut up you’ll be checking out sooner than you think” and broke into her beautiful laugh that I haven’t seen much of lately. OK so it was at my expense but she was laughing. The next night we went to see a movie and Trrrr paid me a compliment. She said the male lead in the movie reminded her of me. Well normally that would be a compliment but not in this case. The lead was played by Kevin James, the overweight guy from the TV show “King of Queens”. The movie was “Paul Blart: Mall Cop” in which he plays an overweight mall security guard who is a bumbling klutz. Every time he did some dumb thing Terry would burst out laughing and say “that’s something you would do”. So again it was at my expense but she was laughing. The important thing is that Terry has been laughing more lately. That’s a beautiful thing. This will definitely make my “Happy Times With Cancer” list. I am blessed to be able to have this time with Trrrr. You see why she is my quality of life. And we carry on.
Saturday, February 7, 2009
Cancer sucks. Living with cancer sucks. But the important thing is I am living with cancer. I haven’t died from it yet. As I begin this blog I am sitting in a nice relaxing recliner chair in the lounge. The chemo lounge. That’s a big part of living with cancer. I spend a lot of time getting IV drips. Sometimes it takes as long as 6 hours. But I bring my laptop which gives me plenty to do between playing some poker online, watching videos and just surfing the net. I get frequent visits from my son, my daughter, my mother and my sister. Terry, my wife, has stayed here with me for the entire session at times. You get to know some of the other patients. Some of them talk. Some of them talk too much. It’s not too bad. The staff here is great. There are usually two nurses to administer the chemo “cocktails”. One of them, Patrice, is extremely knowledgeable, not only of the drugs involved but also the side effects and how to deal with them. She is very helpful. Everyone here is very caring and accommodating. I see a lot of cancer patients here. Most of them are older than me. It’s nice to be relatively young but it’s not nice to be relatively young and fighting cancer. I am reminded of my grandfather who used to say when he was in his seventies “I’m not worried, it’s too late for me to die young”. He actually fought breast cancer at a younger age. He was supposed to die from it but did not. Maybe I got some of those genes. Seeing some of the other patients makes me realize how fortunate I am. My treatments are going well now and I am in no way suffering. Some of the patients are suffering. It is often said that no matter how rough things get there is somebody who has it worse. That is very true. Living with cancer is like living with a handicap. My handicap will burden me for only a small portion of my life. There are many people who live with handicaps for their entire life or a good part of it. I once had a friend who was a quadriplegic. He could not move any part of his body from his neck down. One day he had to have surgery to correct curvature of the spine, a common problem for people confined to a wheel chair all the time and unable to support their own body weight properly. I’ll never forget the night I visited him in the hospital. He was in excruciating pain and having a very difficult time. I literally asked God why He was making my friend suffer so much. Hasn’t a quadriplegic suffered enough? God didn’t answer me, at least not in a way that I recognized. But my point is that this man and countless other people suffer much more than me. -------------------- Well now I’m home from the lounge but I’m still getting chemo. I’m hooked up to my infusion pump getting a steady dose of 5fu. The pump is contained in a small purse-like holder that I wear around my neck. It stays for two days at which point I go back to the lounge to have it removed and to receive hydration. At that point they also give me a shot of neulasta to boost my white blood count. This helps to prevent the 5fu from FU ing me too badly. Then it’s two weeks until the next round. -------------------- I’m off the pump now. I am very tired. It seems the fatigue gets worse with each round which is normal. They tell me there is a cumulative effect. The fatigue lasts about 3 days, not too bad. All of my side effects are tolerable. Some are even comical. One side effect that I have developed recently is clogged tear ducts. I would have thought that meant I couldn’t produce tears. Nope…just the opposite. It seems that eye fluids drain down through the tear ducts into the nasal system. When the ducts are blocked the eyes can’t drain properly so the tears come outward like crying. My eyes are constantly watery, often with tears running down my face. On one of my date nights with Terry I was hooked up to my pump which resembles a purse. We were in a restaurant and my eyes started tearing like crazy. So Terry was sitting there with a guy wearing a purse and crying his eyes out. Am I a hot date or what? My taste buds are virtually gone. Most foods I can barely taste. Some that I used to enjoy now taste badly. I’ve been overweight all my life. Who would have thought my enjoyment of food could be taken away. But it’s a lot better than the mouth sores and mucositis I had with the first round of chemo. At least I can stay nourished. My fingernails are almost gone. They have separated from the cuticles and are creeping up towards the tips. When they get close enough I think they’ll just fall off. Cancer cells are fast growing cells. Chemo attacks fast growing cells. Unfortunately taste buds, fingernails and hair are all made of fast growing cells so they get attacked too. I’m losing all of them. I’m glad the other parts of my body are slow growing. The bottom line is that I am doing very well right now. I feel better than I felt before treatments began and far better than after the first chemo cycle. Sometimes I feel so well it’s easy to forget that I have a deadly disease. I am tolerating the treatments reasonably well. The important aspect of that is it allows me to continue getting treatments. Without the treatments I have no weapons with which to fight this battle. Sooner or later that will likely change. I may succumb to the cumulative effects and not be able to take any more. Another possibility is that the cancer will get “smart” and no longer respond to the chemo. At that point we’ll try something else. My battle is made easier by the fantastic support network I have been blessed with. That network is headed by my wife Terry who takes care of me when I need taking care of, goes on dates with me no matter how pathetic I look (she does laugh at me sometimes), loves me (I hope), and gives me daily quality of life. My son and daughter stop by, call, visit me at the lounge and fill my heart with love and pride. There’s my mother who is full of optimism which I lean on often. My aunt who I talk to regularly provides hope, strength and thought provoking conversation. My sister fills in the gaps with humor, reminiscing, and more love. Then there are countless friends who call or e-mail, including friends I haven’t heard from in years. I am luckier than other people in my situation in that I work from home. Business is slow now so the timing is good. If I have to take a nap during the day I can. Terry and I work together so she covers for me if necessary. Some people have to worry about getting to work each day, juggling time off for treatments or how to keep their job at all. These are problems I don’t have to deal with. I have health insurance that has covered everything except small co-pays. I can’t imagine how the uninsured or underinsured deal with the expenses when a single injection of the white blood cell booster costs $3,400. The chemo treatments cost $4,000 - $5,000 each and a PET scan costs $7,000 - $8,000. There is definitely a problem with health care in this country but I don’t know what the answer is. I understand the medical profession’s position, the insurance companies’ and the patients'. I don’t know what the answer is. I don’t think socialized medicine will work and I haven’t heard of any other country that does it better. I do have an idea but since I’m not running for office I won’t burden you with it here. A blog entry called “Living With Cancer” wouldn’t be complete without talking about facing death. I believe in God and in heaven. I hope I get there. If I do get there I believe that I will be reunited with many people who got there before me, particularly my father. I believe there will be eternal happiness there. So what’s to be afraid of? Don’t get me wrong. I’d like to put it off as long as possible but when that time comes it will be OK. There is no question in my mind that God has been holding my hand and leading me on this journey. I’m not sure where He is leading me but if I’m going with Him it can’t be bad.