It just now occurs to me, I should be labeling these as chapters.
That is definitely a sign that I must be starting to get right in the head! Maybe?
Whatever, at least it makes more sense to me. Let it be known, the first three lines are me talking to myself.
It has been a long road, path, journey, trip, experience and pain in the butt to get to this point. I have experienced many adverse effects from my medications. Some have been changed and others have just been discontinued with no replacement.
As always, my wife has been my anchor. Regardless of how mean or stupid I can be, she always has the patience and love I need. I am still unable to last very long when I go shopping with her, but I go as often as I can. Sometimes it is just better to let her go alone so she can enjoy herself shopping. Yes indeed, she is a shopper, not so much a buyer. She can look all day and not buy a single thing. Today she went for a few hours, alone, and came home with a swinging bench for the porch. I have looked for a specific bench for years. I will be sitting on the porch often now.
We went fishing last weekend. We didn’t catch anything,but it was fun just to go out in our boat and be together.
I think the worst thing about being sick and unable to work, is the being alone the biggest part of every day. My wife leaves for work around 8am and often doesn’t get home until after 6pm. Other than the days I go to dr appointments, it is just me, the three dogs, one cat and chinchilla. The dogs are my shadow the whole day. For that matter, the cat is usually right there too. There is only so much TV you can watch and a lot of days I can’t read as much as I used to. I used to average about four to five books a month. Now, if I can focus long enough to read one a month, I feel I have really accomplished something.
My appetite is still not good. I go through periods of only being able to eat one thing. I am finishing a time of eating the little orange peanut candies. I was averaging a bag a day. I’m down to about half a bag. Before that it was cotton candy. I was eating two containers a day of that stuff. I try to eat healthy stuff, but can’t keep it down, or most of the time, even get it down to begin with. I used to love fried anything! Now the thought of eating anything fried or greasy, causes nausea. I eat a lot of cereal, eggs, pancakes and pasta. Every once in awhile I can eat a filet mignon. I don’t remember if I ever mentioned, I had my top teeth pulled a month before I was diagnosed with Multiple Myeloma. That was in August of 2013. I have not been able to put the dentures in since then. I have a terrible gag reflex. That makes it hard to eat most things. I’m hoping that once I am able to endure a few months of the bone treatments, I will be able to get implants. However, I have only had one treatment so far and I ended up in the hospital. They don’t know if it was the zometa, bone treatment, or the chemo, or the combo of both. Anyway, I don’t want this to sound like I’m worse off than I am. I am in much better shape than I was. Unfortunately, the main complaints that people with this cancer have are fatigue and terrible bone pain. I wish I could say I’ve gotten use to them, but I haven’t.
Sadly, one of the founders of the website I go to to talk with others that are going through this cancer and others, died a couple of weeks ago. smartpatients.com is a great place to get information and be able to talk to people that can tell you what to expect and how to overcome some things. Mike, the fellow that died, was a twenty year survivor of the same cancer I have. The average life expectancy is 5-7 years if the meds work. There is no cure, but they have been able to control it on some folks. Mike had many suggestions and offered a lot of encouragement to many of us. I’m not gonna lie and say I wouldn’t like to outlive the average, but I know that this cancer is in the bones and blood. That means lots of infections and pain. That means a lot of hospital stays and medications. It is strange to realize what we are willing to endure, just to stay alive. That doesn’t mean there aren’t days that the pain or vomiting and diarrhea don’t make you think death would be an improvement. I’m not saying I want to die, I’m just making it known there are some miserable times that come with cancer.
The good thing is, one really good day makes up for a lot of miserable days. Being able to spend time with family, go fishing, go to the movies, or just get out of the house is considered a really good day. One thing about this cancer is, the attack is within the body. On the outside, we may look pretty well. Since the pain never leaves, it is a real workout to put on a “happy face”. Most people I know that are sick, don’t want to be a downer to the people around us. If you know someone that has cancer you can be sure, they aren’t telling you everything, unless you happen to be that good friend that really digs. Through this blog I have communicated with folks that want to know what is going on at all levels. My stated purpose for this blog was and is to help people understand to some degree what this dis-ease is about.
Those of you reading that don’t have cancer, can and do give encouragement at a different level than someone that has cancer. Those of us with cancer need both type of people. No one only wants to talk to people that are sick all the time. Before I was diagnosed, I had a lot of friends. I did hundreds of hospital visits. I did many hospice visits. Now, not so many friends want to really know what is going on. I guess for some people the more they know, the more chance there is they will catch it. Again, I’m not complaining. None of us want to face death. Actually, that’s not true, there are many people that do hospital visits and hospice visits. Most people that do that don’t fear death. I don’t want to die right now, but, I don’t fear death. I have been there with folks as they took their last breath. I can say with 100% of all I have in me, no one wants to die alone. The folks I was with, when they died, that didn’t fear death, and had friends and loved ones around them, were very peaceful. It is very different when someone dies and they fear death.
If you are personal friends with someone that has a terminal illness, don’t write them off before their time. Be a real friend. Go out of your way to show they mean something to you. We don’t want to face what they are going through. Guess what, everyone is going to die. You are going to die. There is a somewhat famous quote that goes like this “treat others as you would have them to treat you”.
When I sat down to write today, I had no idea this was where I was gonna end up. I have no intention to be mean or in your face about this topic. I guess my intent is just to open some eyes. I know there are plenty of folks out there that don’t need to hear this. In the last two years I’ve met some of the best people I could ever imagine. Complete strangers have filled in the gap for my wife and I. I’ve had folks that I’ve never personally met, do and offer to do things to help us that are just too numerous to list. None of those people did what they did for recognition anyway. The people looking for recognition are the ones that never get what it means to help someone. I’m lucky to have a place like this blog to say what is on my mind. If one person that is in need of a friend, is contacted by one of you reading this, this is definitely considered one of my best days! I wouldn’t wish cancer or any other dis-ease on anyone. I would however, wish empathy on anyone that gets sick.
I have had some very sweet and encouraging things written to me by folks that read my ramblings. Thank you all from the depth of my soul. I pray blessings and good health on everyone of you reading today. Life is a groovy thing. Things happen to us that we may have thought to ourselves would never happen to “me”. When it comes to cancer, it is an equal opportunity dis-ease. It doesn’t care if we are young or old, rich or poor, pretty or not so pretty, rich or poor. It will cause you to reevaluate your life. I ask myself daily, what can I do to make a difference in someone else’s life?
Once I hit the publish button these words are part of my life history. Part of my legacy! I’m not rich, but I hope these words have some value to someone!