My Story - Less

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Heb 9:27 And as it is appointed unto men once to die, but after this the judgment:


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My Story


You have cancer and less than a year to live or several months to live. Here is what I have learned since hearing those words from 3 different doctors over the last year or so. I will try to tell you what I have learned without giving you all of the humdrum details of my particular case. Everyone has their story and you'll get tired of hearing them. Sometimes you must listen to people for hours to glean a tiny nugget of useful information. I will try to spare you that here.

The first thing I learned is, do not panic. Let it sink in and don't make any rash decisions. Who do you tell and when do you tell them? This may be one of the most important decisions for you. If someone was with you when you received the news, this may be out of your hands. If it is still within your control, think before you act. Once you tell anyone, it is out there and cannot be withdrawn. The mere act of telling people will bring on more stress. People will treat you differently. Family, friends, acquaintances, coworkers, customers and even strangers will hear about you and will treat you differently. Some will pity you, some will avoid you, some will smother you, some will try to comfort you, strangers will go out of their way to offer well wishes, prayers, sympathy or advice. The really honest ones will simply say, "I don't know what to say". Most people will have some kind of well meaning advice for you. Many will have a friend of a friend who has gone through exactly what you are going through and will try to tell you what type of treatment to have, what pills to take, where to go and on and on and on. Some will have seen a television advertisement for a place that you must go for treatment. Some will have some secret miracle drug or potion or trick or alternative treatment that cured someone else very quickly. You will be bombarded with well wishes, prayers, advice, books to read, web pages to visit, and phone numbers of strangers that you should call. You will be placed on many prayer list, even in churches whose teachings differ wildly from your own beliefs. When this happens. Notice I said "when" it happens, be rational, stay calm and remember that all of these people just want to help. They want to play some small part in your healing process. You should not try to follow all of their advice though. Some of my worst discomfort that I am still dealing with was brought on by an alternative treatment that I tried. Before you try anything, research, research and research it some more. The Internet is a valuable resource for this, but keep in mind that anybody can write anything on the Internet. Verify everything from multiple sources and don't be too quick to believe in or try miracle or alternative treatments. If your treatment plans involve traveling from a technologically advanced country to an island or 3rd world country, you may want to rethink it. There is a reason that facility is not allowed to operate in your technologically advanced country. That reason is probably not some conspiracy to keep health care profits from falling. Are you ready for all that added stress after just learning that you may not have long to live? I wasn't. That is why I recommend taking a little time and choosing carefully who you tell and when you tell them. I recommend preparing yourself before you tell everyone else.

How do you prepare yourself? It may sound a little odd, but try to become a little familiar with the idea of dying. Think about what it would mean for you and how it will affect those around you. You might just figure out that in some cases, you have the easier path. The greatest help to me was my faith. If you haven't attended church in a while, pull out the bible, dust it off and start reading. Genesis might not be the best place to start for you. Maybe Luke or Mark might be better, I can't tell you for sure. I personally like Genesis because it tells of the paradise that once was, and Revelation tells of how it will be regained. It is the stuff in between those two books that tell you how to get where you need to be though. If your not willing to pull out that bible at this point, your going to have a much rougher time. The greatest piece of advice that I can give anyone that started school after about 1963 is this. We were taught a whole lot of theory in school when it comes to the big bang. The textbooks stated that it was theory but most of us didn't pick up on that huge word "theory" and what it actually meant. Do your own research and find out what makes more sense to you. Find out what is fact and what is theory. Only about 55 percent of scientist, believe in evolution, yet a much higher percentage of the general population does. Why is that? Find out the facts for yourself.

The next thing I recommend is to stay calm. Stay calm and those closest to you will also stay calm. Remember they are going through this also. They have as many or more concerns and worries than you do. Generally the people around you will either go overboard or appear cold and uncaring. I found that the ones who were more matter of fact and appeared at first to be uncaring, turned out to be the best for me to be around. In time I learned that these people did in fact care deeply but they remained calm because I remained calm. I also learned that they were going through a situation every bit as concerning as I was. They were trying to figure out their future without me in it and how it was going to affect their lives. I don't say that to be arrogant. There are certain people in all of our lives, which will be deeply affected when we do indeed die. A spouse, brother, sister, mother, father, children or very close friends. Notice I said when and not if we die, which brings me to a fact that you may not have really fully considered before.

We are all going to die at some point, and getting comfortable with that fact now will make it easier whenever it happens. That could be tomorrow or 90 years from now. Don't give up ever, but mentally and spiritually prepare for death. This is the key to it all. Once you are prepared for it, you will not fear it and you can take it out of the equation and get on with healing your body. Once you are truly prepared for dying and getting better, both options will be appealing to you. I am not in any way talking about suicide here. I am simply stating that you will be at a point where you fear neither option. You will also understand that they are both options and you may decide to let nature take its course and just enjoy what life you have left and look forward to what is to come. I would say it is something like the feelings you had shortly before graduating high school. Maybe you felt a little nervous, but also excited about having endless possibilities ahead of you. If you're an atheist, you may have a little trouble with this. All I can say to anyone in that group is that all of your worries will be gone if you die. Even if you don't believe in any form of after-life there is nothing to fear. You will be gone and your consciousness will be gone and so you won't be aware that you're dead. So what is there to fear? I have a hard time writing that because of my own beliefs. Because of those beliefs I am compelled to tell anyone in that category one time and one time only: pick up a bible, study it, get help with studying it, and learn the truth. Cooking is fine unless you're the one being cooked. Sorry, I just couldn't help myself. I got to the point of acceptance early on. I was and still am in a state of mind of acceptance and anticipation and happy and looking forward to what is ahead in either lane. When my time does come, either soon or much later, I will be sad for those who are not able to join me on my journey. Those that will remain behind to mourn, and carry the burdens of this earthly life. This understanding or state of mind has also made it much easier for me to cope with the loss of loved ones. So if you have decided to just let nature take its course, you're done at this point, right? Not really. I think I have learned a few things that may still be of help to anyone in this type of situation.

If a doctor is telling you how long you have left to live, it is probably because you asked. He/she is giving you an estimate based on their experience with similar cases involving other people. You are not other people. Everyone responds differently to the news that they are seriously ill. How one reacts to the news will ultimately have a huge impact on how they tolerate treatment. Attitude is everything. The Dr. is also most likely giving you a worst-case scenario they believe will happen if you decide to not go forward with any type of treatment. There are almost always options. Discuss these options with your doctor, but don't believe everything thing they tell you. I found that social workers, nurses, even people who clean hospital rooms may be more honest about certain facts. They each have a perception or piece of the pie of what your life will be like during treatment. It will be up to you to put all the pieces together. People who are being treated in a hospital have much more contact with nurses, techs and cleaning people than doctors. These are the people who will be able to answer the quality of life answers. When I was told I needed a stem cell transplant, I went and talked to the nurses who collect the stem cells and inject the stem cells.

I got my most valuable information in a 2-minute conversation with these people. They see transplant patients on both ends of the treatment. They could tell me what patients looked and acted like when they were going through collection and again several weeks later when they were getting their stem cells back. Keep in mind that everyone is different and reacts differently to the same treatment. The biggest mistake I almost made was looking at one person's experience only. Try to get a bigger picture. Ask about those rare, best case scenarios and then temper them with the worst cases.

The bottom line is that you will not have the exact experience that everyone else has in your situation. For example, I am writing this from a hospital room. Most of the patients in this wing are having the same treatment that I am. I am sitting here in my jeans and a t-shirt. I can and do put on my boots several times a day and take a walk outside. Most (95%) of the other patients in this wing, going through the same treatment are wheel chair bound or barely able to walk with a walker. When the ones who use walkers are able to leave their room they must be accompanied by a physical therapist coaching them through every step and a nurse walking behind them with a wheelchair for them to rest in when they start to fall. Others are bedridden and have signs on their doors telling the nurses when to come in and turn them because they can't even roll themselves over. So why such a big difference if we are all going through the same treatment, getting the same drugs and so on?

I will try to give you some tips on how to survive the hospital while answering that question. The two topics are closely related. Part of the answer is that everyone is different and everyone reacts to treatment differently. Age and overall fitness make a difference, but attitude is the most important factor. The best piece of advice that I could give anyone at this point is to avoid negative people. Repeat that a hundred times. Avoid negative people. Avoiding negative people will automatically improve your attitude. Don't listen to all of the aches and pains stories from other patients. Patients will exaggerate; they will try to one up each other on their suffering. Maybe it is just humane Nature. Those exaggerations can subliminally lead to what you perceive as real aches and pains though. Avoid this trip hazard. You can improve your stay at the hospital before you ever arrive. Pay attention to how you are truly feeling and do not let outside factors affect those true feelings. The mere act of walking into a hospital for treatments can make you feel more sickly than you really are. If you start having symptoms that you didn't have 2 hours before or even two weeks before, take a good hard look at those symptoms to see if they are real. You might be surprised at what you discover. It is very easy to go into a hospital and settle into the hospital mentality. Look at everything before you do it. Do you really have to put on a hospital gown? If you put that gown on you will feel 5% sicker. You will in fact be 5% sicker. There are times when it is necessary to wear a hospital gown, but you will be told when that is. Don't put it on just because a nurse puts it in front of you. When you do need to put it on, only wear it while it is necessary. You will feel better in your own clothes. Don't get dependent on your new found wait staff that will be happy to attend to your every need while you lay in bed getting more dependent and lazier and sicker by the minute. If you are able to do something for yourself, do it. Can you make it safely to the bathroom? If so, stop peeing in a jug next to the bed and go to the bathroom. Can you safely make it down the hall to get your own water? If so, do it. Can you walk without help? Do it while you can or soon you may not be able to do it at all. When you don't feel like eating, eat. When you don't feel like doing anything, do something. Try not to discuss potential symptoms. Hearing about a particular symptom that other patients often have in your situation plants a seed in your subconscious. You may start to expect to experience that symptom to the point that you start feeling something that isn't there. Pay attention to this. Remember up above when I stated that everyone in my wing of the hospital is on the same drugs? That is not entirely accurate. Some people will take any pill that is put in front of them. Don't do it. Everything in the hospital is optional. You are still free. Everything that your doctor tells you must be done is truly only a recommendation. You are in control. I will give you a couple of examples here. Chemo may cause hiccups that last for days or weeks. They will bring you a pill that will stop the hiccups. It is all good, right? Not really. That miracle pill may cause you to have diarrhea. When that happens, you will start to dehydrate. The next thing you know your hooked up to iv fluids 24/7, this will make it harder to get around and give you one more excuse to start peeing in that jug next to the bed. Those sponge baths will become allot more tempting and the cycle will spiral downhill quickly. Personally, I would rather have the hiccups. Pain reducing drugs are probably the most dangerous temptations. If you are really sick, you are probably going to have some discomfort. Pain will not kill you, but taking too much pain medication may put you on the road to death or a path that you do not want to take. Pain medication flows through hospitals like candy. It will be prescribed to you based on a scale of how you rate your pain. Always, always cut your actual pain by a third when talking to the doctor. Don't ever say your pain is at level 10 unless you want to be unconscious for 12 hours to several days. Try to only take pills for pain. Sometimes, the pain might simply be too much too bear and you just need a break from it. When that happens and they come to squirt that miracle juice in your central line, you must act quickly to avoid another pitfall. Once it is in you, you have 1 or 2 seconds to roll over and lay on your stomach. This is assuming that your central line is in your chest. I found it helpful to lie on my side during the injection, so that I didn't have as far to roll. Why? If you do not make your port or central line inaccessible, you may get subsequent injections before you are thinking clearly enough to make a rational decision as to whether you want more miracle juice. Make them wake you up before giving you more. This is another time when I found it helpful to wear a t-shirt instead of the hospital gown. It was harder for them to access my line, but still possible. Combining the t-shirt with sleeping on top of my central line saved me from unneeded pain meds on more than one occasion. The nurses will quickly learn to not order the miracle juice until you actually ask for it. Once you ask for it, you may have to wait for 15-20 minutes while it makes its way up from the pharmacy. This will give you a few more minutes to get your wits about you. Don't be afraid to change your mind about taking all or part of it, when it does arrive. Just because a doctor prescribes 6cc, doesn't mean you have to accept 6cc. Personally I told them to inject only one third of what was in the syringe and to inject it slowly. Don't ever let them push it in fast or "slam it" as they call it. If you're not careful, this may happen before you even realize it is going to happen, and you probably won't make the flip onto your stomach. If you are on your side when this happens you have a slightly better chance of making it onto your stomach, but not much. The person doing the injecting will most likely guide you onto your back rather than let you fall forward onto your stomach. This all may sound a little paranoid, but it is accurate from my personal experiences in the hospital. I don't for a minute want to suggest that doctors or nurses are trying to keep you in the hospital. That is simply not the case. They will however, try to make your stay as comfortable as possible, which may not be in your best interest if your goal is to walk out of the hospital as healthy and as soon as possible.

The main thing that I would stress is to maintain your faith, control and independence as much as possible. This will require you to endure some pain, push yourself harder than you ever have and make yourself do things that you never thought you could. When you don't feel like eating, EAT. When you don't feel like doing anything, DO SOMETHING. When you think you can't wait any longer for the miracle juice, WAIT or take less than what is prescribed. This will increase your quality of life while in the hospital and may reduce the length of your stay. It will give you better quality visits with loved ones while you are in the hospital. It will keep your head clear enough to help guide your loved ones in the difficult choices they may face. Most importantly though, you will have a much better chance of walking out of the hospital if that is indeed your destiny. You and your loved ones will be also be prepared if your destiny is something greater than that.

I have just written the things here that I wish someone had told me when I first got the news that I may not be here long. These are just my humble opinions based upon my experiences and should be taken with a grain of salt. Your experience may be very different. I would wish you good luck but you don't need it. Just start cracking your knees more often and it will all fall into place.

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