The CHARLEY Approach to cancer
By Charles Silverman
Copyright 2010 - Charles Silverman
Smashwords Edition
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Introduction
You are probably reading this because you or someone close has just been given a diagnosis that includes "that word", cancer. You'll notice that I've used a small c when writing that word. That's because if I had used the large C, it would give this disease a respect or power that it does not deserve. It's just a disease, it's treatable and you can be victorious over it. The contents of this writing are based on the experiences of only one person - that would be me. But I believe that sharing my experience can be helpful to you, so I'm glad you're reading it. I hope you will enjoy what I've written and maybe even feel a sense of empowerment after reading it.
My name is Charley and I'm a proud cancer survivor. In the spring of 2009, at age 56, I was diagnosed with Diffuse Large B-Cell Lymphoma - one of the many different forms of Non-Hodgkin's Lymphoma. In terms of treatment, I've been through radical surgery, IV chemotherapy, spinal-cord chemotherapy and radiation therapy. As I write this, I am in remission with a few clean PET-CT scans under my belt. I am currently receiving post-cancer treatments that I will need for the rest of my life, which I expect to be a very long time. I arrived at this point through an approach that I believe can be used by and helpful for everyone.
I named it the CHARLEY approach because I figured it would be easy for me to remember and I'd probably have no problem spelling it. I wrote this in simple, easy to understand terms so that you wouldn't have to fight through a lot of medical jargon. It's my seven point plan for the person who has just been told that he or she, or a loved one, has cancer. This plan is really a collection of the thoughts and ideas that helped me and I thought it might be of some assistance to you. This is a very simple and pragmatic approach and there is no reason why it cannot work for you.
C - CANCER
You have cancer. Say it. "I have cancer". Say it again out loud. Get used to it. You have cancer. You cannot wish it away or bargain with it or hide it away in a drawer. You cannot bring it to "Let's Make A Deal and try to trade it away for what's behind curtain number two. You've got it. It's all yours. It's your little gift. Now let's talk about how to deal with it.
The best place to start is with some education. What do you really know about cancer? For example, did you know that cancer is no longer the boogie man that it was thirty years ago? It's not a death sentence - it's just a disease. Nowadays, because of the amazing advancements in knowledge, treatment, pharmaceuticals and attitude, it really can be considered more of a chronic disease than a terminal one. Many forms of cancer can be cured, some like mine go into remission, and some hang around longer than others. Sometimes, after being in remission, it can recur and you've got it again. Could you die? Sure you could. But if you're not careful, you could leave the house today and be hit by a garbage truck while crossing the street - and die. In my approach, death is just not a part in the plan. My plan is very simple: You have cancer. Now treat it and beat it.
There are many different types of cancer. What do you know about your specific type? If you want to, you can know everything that is currently known about the type of cancer you've got. The internet is filled with information many sources; doctors, hospitals, healthcare sites and forums filled with the experiences of fellow cancer survivors. Please note that I said survivors, not patients. We're survivors now - cancer survivors who are more than happy to share their experiences with you. You've joined a big club and we're getting bigger and better every day.
I believe that one of your first goals should be to learn everything there is to learn about your particular type of cancer. Please do not be afraid to learn. The facts are your friends. There are people who might advise you not to read too much because it might scare you. I strongly disagree with that kind of thinking. I firmly believe that just the opposite is true. Knowledge is power. I urge you to learn about the disease, the various treatments, potential complications, available resources and all the other aspects of dealing with your new enemy. Read what others say on the various online forums so that you can benefit from their collective experiences. The more information I had, the better I was able to communicate with my doctors as well as understand what they were saying to me. An open dialog between you and your caregivers is a valuable asset, so be prepared. Make yourself an equal partner in your treatment plan.
In your research, you are going to come across many statistics related to cancer in general, and yours specifically. Some of them will be survival statistics, i.e. the ever-popular "five-year survival rate". Don't be swayed by any of the statistics you read. Those statistics include the outcomes of people from years ago. There have been amazing advances in research, treatment and knowledge and they have grown exponentially. Because of this, the statistics have been improving every year. Don't let the old numbers scare you because you and I are creating new ones for the future. In one year, in the most recent statistics, my own "survival rate" has increased from 76% to 79%, and we will continue to improve that number.
Ignorance may be bliss, but like I said, knowledge is power. The more knowledge you have, the easier it will be to prepare yourself. Arm yourself with information because you're going to war … and you're going to win!
H - HELP
You could probably do this alone, but there's no reason you need to be a solo act. You have family and friends and neighbors and co-workers and all kinds of people around you who can help you and are probably very willing to do so. Invite them to join you in this war. Build yourself an army, a big team of people to help you, but choose that team wisely. I'll tell you shortly how I chose mine - and some of those choices might surprise you.
You may need different kinds of help at different times during your treatment. You might need emotional support, or someone to drive you to and from your treatments, or a person who will watch your kids after school, or do a little shopping for you, or maybe even someone who will walk your dog. Start lining up those good people now. It will give you peace of mind when you know that your resources are starting to come together. And if you ask, they will probably be more than happy to help. Don't be afraid or too embarrassed to ask for assistance. As you assemble the team, share this approach with them to get them on board with your new way of thinking.
When I first received my diagnosis, I went directly to our local library and took out a number of books to start educating myself. The book I found to be a terrific asset was "Chemotherapy and Radiation for Dummies". That's right. The Dummy series is amazing. If you've never read anyone of the dummy books, then you're about to be surprised to learn that they are really very intelligently written. I thought that the information presented was very informative and helpful. Go to the library and borrow it, or buy it, or find it from someone who might have it. It's really a great book to read in the early days before treatment begins. I knew exactly what to expect and I was ready.
Help comes in many forms. I found that the level of help, support and encouragement that came from my online community was an amazing strength. I have been lucky enough to belong to a general online community forum that is essentially social in nature. Once I started sharing my story and my daily experiences, my online friends rallied to support me and they are very much a part of the success story.
I also used Caring Bridge to document my journey through the world of cancer treatment and invited everyone to read along with me - and many did. Caring Bridge is an online service that allows you to keep a journal of your experiences and also allows visitors to leave their comments in a guest book. Reading the comments of my family and friends gave me great strength during the various treatments. It also gave me a place to document all that I was experiencing just in case I needed to remember something, such as how I reacted to a particular treatment. Of course, being able to publish updates on how I was doing also saved countless hours on the phone describing things to each person, one at a time. I have referred back to it a few times to refresh my own recollection about certain aspects of my journey through cancer treatment. Using this service was free, easy and very helpful.
I encourage you to start writing today, whether it's on the Caring Bridge website or just some notes to yourself in a spiral notebook. There will be a lot to remember and writing down your experiences might be some of the best self-help you can provide for yourself. There is a phenomenon during chemotherapy that is called chemo brain. You might experience a little mental cloudiness at times or perhaps a few memory lapses. So having it all written down will help you when your brain is a little foggy. By the way, after treatment, chemo brain does fade away.
There are also a number of agencies that may be able to provide assistance. You've probably got a chapter of the American Cancer Society, the Leukemia & Lymphoma Society, or other specific cancer organizations in your area. Find the number and give them a call. See what services might be available for you, such as transportation to treatments, support groups, etc. The American Cancer Society has a Relay for Life that you'll want to learn about because when you've beaten your cancer - and you will - you'll want to enjoy your victory lap with other survivors. I participated in my first Relay for Life approximately one year after treatments first started. The experience was amazing and I plan to continue to participate every year. I was able to mingle with some who have been survivors for fifteen, twenty and forty years. Seeing them and talking with them was very encouraging and uplifting.
One more thing that will help you greatly is a sense of humor. If you have one, you're already ahead of the game. Use it. It will be very helpful. It will make you feel better and will also make those around you more comfortable. It came in very handy during the spinal cord chemotherapy when the doctor attempted to tap my spine eight different times and couldn't find my spinal fluid. Yes, even in the most perfect of plans, not everything goes exactly the way you'd like it to go. Be prepared to be flexible too!
If you don't have a sense of humor, get one - or borrow someone else's!
A - ATTITUDE
Attitude is everything. That is my mantra. If you believe that you will beat your cancer - and you will - then you will beat your cancer. I beat the crap out of mine and if it comes back again, I'll beat it again. There is absolutely no question in my mind about that.
When I spoke about choosing your support team wisely, I meant it. I told my three kids that they needed to be 100% positive that I will beat this cancer, without question or reservation. If they could not be 100% positive, then don't be hanging around here. My daughter immediately said she was 100% sure. My older son said he was 100% sure. My younger son said he was 99% sure - so I told him to give me a call someday if he ever gets to 100%. He was stunned and said "Wait a minute". I asked him why 99%. He said that he knew someone whose mother went through treatment and it was very difficult. He was worried that I might quit. I asked him if he ever knew me to quit anything in my life. He said no. So I asked him what in the world would make him think that I'd quit this? He thought for a moment, admitted that I was right and he declared himself to be 100% sure.
I needed a few moments of clarity with my wife early on. I could tell that she was a little quiet, perhaps sad, maybe even depressed. Well, I wasn't going to be having any of that. I finally got her to open up and realized that she was really scared. I said to her, "Look at me and tell me ‘Charley, you could die!'" She wouldn't say it. I said it again and after a few moments she said, "Charley, you could die!" I said, "OK. Good. You said it - we got it out of the way. Now you never have to say it again, and by the way, I have no plans to die from this". I think that getting her to open up and say those words helped her deal with how she was feeling. I believe she felt better almost immediately. She never again showed any signs of sadness or worry and we never had to deal with it again.
Attitude is everything. For those who are close and to whom you wish to share your story, make sure that they can handle it and challenge them if necessary. I made some choices that surprised and shocked some people. I decided that there were a few family members that I didn't want to tell until the treatments were concluded. I was concerned about how they would react and how they might try to offer assistance in ways that I might not find as helpful as I would like. I think I made the right decision because the outcome was exactly what I wanted. But it was a tough call - one that was not made easily. You'll need to make the decision that's right for you. But as you make these decisions remember that you're in charge, not the cancer
Attitude is everything. Start believing, with 100% certainty that you will beat your cancer. Also start realizing that you are in charge of your treatment. Yes, the doctors will be responsible for designing your plan and the nurses will be responsible for carrying it out - but it's your body. You are the person in charge. Make yourself an equal partner in your treatment plan. While you're at the library finding, "Chemotherapy and Radiation for Dummies", also look for the book "Love, Medicine and Miracles" by Dr. Bernie Siegel and read the first chapter. Become what he describes as an exceptional patient. Ask your doctors and nurses every question you need to ask. You're not wasting their time and you're not going to embarrass yourself. There is no question that they have not heard before or answered before. Ask everything - and if you don't like a particular answer, or approach, or part of the treatment, work with the doctor to get it to a point where you're OK with it. Remember that the only stupid question is the one never asked.
Attitude is everything! Chemotherapy, in most cases, will cause you to lose your hair. The cancer cells are fast growing cells and chemo kills fast growing cells. Blood cells are also fast growing so your doctor will be taking blood samples regularly to make sure your blood levels are within normal limits. Taste buds are also fast growing cells, so things are going to taste funny for a while. Hair follicles are fast growing cells so your hair may fall out. I decided that chemo was not going to take my hair - so I took it myself. I asked my older son to come over with his electric razor and shave my head. I was not about to let the chemo have the satisfaction so I took care of it myself. That's also a part of being in charge of your own body. And yes, all my hair grew back and foods are back to tasting the way they should.
Just in case you haven't figured it out yet, attitude is everything!
R - RECOVERY
You'll be doing a lot of recovering. In general, you'll be recovering from cancer. But it's a little more complicated than that. First of all, you'll be recovering from the shock that you even have cancer. I think you've done that already. But, if you need surgery, there will be a period of recovery from the procedure. If you require chemotherapy, you'll have a period of recovery after each treatment. Radiation therapy, there's a recovery period there as well. Learn about exactly what recovery will mean to you. I had all three, including two kinds of chemo - one in the veins and one into the spinal cord. So I have lots of experience at recovery.
Let me tell you about my recovery from IV chemo because that was most complicated. I had six rounds of chemo, one round every three weeks. For a day or two after treatment, I was tired, but other than that, I was OK. When day three arrived, it was like death only I was still alive to experience it - and that day went on for hours and hours and hours, for a few days. I called it the "chemo crash". I could barely get off the bed, and let me tell you that with all the water I had to drink during chemotherapy, getting off the bed eventually became a priority.
Slowly, energy would begin to return to me so that by the end of about eight or nine days, I was feeling a little human again. The advice I was given was really good advice. It was given to me by my urologist, who also has been through treatment for Non-Hodgkin's Lymphoma, and it was great advice. Here is what he told me:
Week One - you're a vegetable. Stay in bed. Do nothing. If you were able to get up to go to the bathroom and find your way back to bed, you've had a good day.
Week Two - you can get up and get around a little, if you feel up to it. Don't push. Do what you can do, but rest and relax where you can.
Week Three - can pretty much be a normal week, just take it easy and don't try to make up for what you missed in the two weeks prior.
You may have a full range of symptoms during chemotherapy from nausea to full appetite, from constipation to diarrhea, from exhaustion to energy, from chills to sweats and everything in between. You might have many of these all at the same time. I can't tell you how many times I was too warm and too cold at the same time. Go try to pick out the right blanket for those moments!
You might not know how your body reacts until the first treatment, but you can use that experience to prepare for the next one. For example - I was extremely constipated for a day or two after treatment. So for subsequent treatments, my dinner the night before chemotherapy consisted of a veggie burger and vegetables and fruits and all things that would help loosen me up so that I would not be as constipated the next day, after treatment - and ginger ale and ginger tea help to prevent nausea.
Ginger is terrific for dealing the nausea. I even started grating fresh ginger over some foods that I would eat the day before treatment. I never vomited at any point over the many months of treatment. Not once!
Staying well-hydrated was a major factor in my ability to get through treatment. I drank a minimum of eighty ounces of fluids every day, mostly water. I believe that recovery from treatment was easier because I was well-hydrated.
In terms of eating, I mentioned earlier that your taste buds will change and some foods will taste funny to you. Much of the advice that I read before treatment suggested that I don't eat my favorite foods during treatment because I won't like the taste and they might stop being my favorite foods. Guess what? I ate them anyway. I ate what I could tolerate. Yes, some of the food did taste different, but they remained my favorites and were something of comfort foods for me. Certain foods became staples for me, particularly ice cream, chicken salad and French toast. These are foods that are easy to make and easy to digest. You'll get to know your body, and you'll know what you can handle and what you should avoid. Don't be afraid to try. I actually gained weight during chemotherapy and I think my recovery was helped because I ate well during the process.
Recovery from radiation was a bit easier. I had eighteen consecutive weekdays of treatment. Aside from the issues related to lying on the table naked while being zapped, the biggest issues I encountered were fatigue and skin irritation. The fatigue was not enough to prevent me from being able to drive to and from treatments. I just needed a little extra rest each day. Skin irritation was only a problem in the last week or so and the doctor gave me the appropriate cream to apply for about a month. I had no problem living with some mild irritation. It was probably the equivalent of mild sunburn and the cream was very helpful in recovering.
L - LIVING
Live your life. Yes, you're sick, I understand that. You still need to live your life, don't you? If you work for a living and can still go to work, go to work. If you need to go part time and can arrange that with your employer, go part time. If you're a walker - walk, gently, when you have the energy. Walking can be extremely therapeutic. If you have a Tuesday night card game and you're feeling up to it, go play cards. Drive. Swim. Go out to eat. Do the things you feel comfortable doing. Eat the foods that you can tolerate. If you gain weight, then after treatment you can start working on losing the weight. Hey - after you beat this cancer - and you will - you can start to fix all kinds of things.
I actually gained a lot of weight from eating comfort foods for months, coupled with lack of activity and lots of steroids. So now, I'm enjoying weekly success at my Weight Watcher's meetings as I watch the pounds slowly disappear. I might actually be in better shape now than I was before cancer.
There are some things you probably should not plan on doing during your treatment time. Swimming the English Channel and running the New York City Marathon are not events that should be on your "to do" list over the next few months. Despite the courage of a Lance Armstrong, don't sign up for the Tour de France just yet. However, you might consider something like that, or a local 5-K race, as a goal once your treatments are done. The training would be a good thing to assist in your recovery and the event itself would be a nice victory lap. I mentioned the Relay for Life sponsored by the American Cancer Society. The "Survivor's Lap" is a wonderful victory lap and walking that lap with so many fellow survivors is an inspirational and emotional experience.
There will be times that you want to just sit around the house and do nothing. That's OK as long as you don't start feeling sorry for yourself. Skip that. Hopefully, you've gotten past all that "feeling sorry for yourself" stuff. If not yet, you will eventually get past it - so save yourself some time and effort and do it now. Remember, attitude is everything? It really is, so live your life. And when I talk about attitude, I'm talking about positive attitude. There is no room for negative attitudes anymore. Focus on staying positive.
Most important - do not dare let anyone tell you that you can't do something that you feel like doing. They don't know your body like you do. They don't know what you feel. Only you really know what you can and cannot do. Now please understand that I'm not talking about ignoring the advice of your doctors or nurses. I'm talking about that neighbor across the street or the well-meaning relative will see you out walking on the block and suggest "Are you sure you should be out here and not resting?" Only you know what you can really do. So go do it! Live your life! There is no rule that says cancer patients must stay home and stay in bed. We live our lives. We're out there doing what we want to do and my bet is that you probably wouldn't recognize us if you were out here with us. Come live your life with the rest of us. Some of us are having a really good time out here.
E - EMOTIONS
This is going to be a very short chapter. I really don't have a lot to say about emotions. As you've learned by reading the previous chapters, I've taken a very pragmatic approach to treating my cancer. There really has not been a lot of emotion involved, at least not on my part. There wasn't any of the "Why Me?" that so many people expected. I cannot tell you if it's right or wrong, or good or bad, it's just the way it is, because it's the way I am. In fact, I started to write something different about the day I discovered the first lump and the subsequent doctor's visits, and those reading my writing wanted to know where the emotion was.
There is no normal. Everyone reacts differently. By the same token, I was very passionate about fighting the fight. I still am and because of the kind of cancer I have, I always will be fighting. There is always a chance for relapse and I'm always ready to go back into battle. There are also many after-effects of the particular surgery and treatments that I had that will be with me for life and require attention. For example, one result of the surgery is that I can no longer produce enough testosterone for my body. I need to be on a testosterone replacement therapy program and for me it has created a new sub-set of problems.
Are you an emotional person? How have you handled the emotions so far? Are you mired in wondering why this happened to you? You know there is no answer to that question, don't you? It happened to you because it happened to you. If you think that you're having a problem with the emotional end of dealing with your cancer, talk to your doctor or nurse and find the resources that are necessary to help you cope. There are many and your care team can help you find the one that fits best. It could be a support group or counseling or just someone to talk with once in a while. But don't let the emotions get in the way of the fight. If you need assistance, seek it out.
One thing I can advise is that you not let the emotions of others get in your way either. There are some who will learn about your cancer and become extremely emotional and dramatic about it. Remember how I told you about not telling some people that I had cancer? Part of the rationale was that I perceived their emotions as being negative and I wanted no part of that. I have my own problems now and don't need to get caught up in the drama of others. You might have to make those same decisions. Just remember to do what's right for you.
Y - YOU
I've talked a lot about me throughout this writing, but this is really about you. Don't let anyone interfere with that. Some might try to make this their story, but it's yours. You need to do all the things that will be best for you. You can get the help you need, develop the winning attitude, recovery from every step and live your life … or not. But it's up to you. You have the power, the ability and the responsibility to win this war and I have every confidence that you'll do it and you'll do it with a class and style all your own.
Stay positive, stay focused and remember that you can and will beat this disease. The survival statistics are getting better every year because of new medications, new treatments, new approaches and new attitudes. YOU need to be a part of this. You've got cancer. But now you are aware of an approach that worked for me and will also work for you. You will beat cancer because you will partner with your doctors, nurses and caregivers and together you will wage war against this unwanted enemy and you will win. You have to win, because if you don't, you're going to mess up all these nice new survival statistics. We can't have that.
After cancer, your body could be different than it was before you were diagnosed. As a result of surgery, or chemotherapy, or radiation, you may notice changes in your body. For me, they are pretty significant. As a result of the surgery and radiation, my body is no longer able to produce a hormone that is required for life. I am getting hormone replacement therapy and will continue for the rest of my life. There are side effects and some potential future complications and I'm dealing with them. Because of the side effects and the possibilities of new problems caused by this therapy, there are certain blood tests and physical examinations that I will need for as long as I live. Because of my approach, I expect that to be for a very long time.
When you've beaten your cancer - and you will - and you've recovered and experienced a cure or a period of remission, you're next step is to pay it forward. You can now share what you've learned from the CHARLEY approach with others. If you know someone who needs this information, invite them to download a copy of their own. You can now help the next person who has just found out that he or she has cancer and needs someone to step forward and tell them what I've just told you. And please remind them that when they have beaten their cancer - and they will - that they need to pass it forward too! Welcome to our ever-growing club. I wish you good luck and complete success.
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