Part 9 (But) I’m not dead yet (Now known as chapter 9)

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!

Thank you

joe

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Part 8 (But) I’m not dead yet!

I know it has been awhile since I last gave an update. I’m sorry it has taken so long.

Today is day 33 since the transplant. It has been a month of ups and downs. I am just now developing the strength to walk for more than 5 minutes at a time.

Due to all the fluids they were giving me, I could barly lift my legs. I have been on massive doses of antibiotics. Oh yeah, also been on a lot of pain and nausea meds.

I spent 2 weeks in the hospital before being released to the recovery center I am in now. I have to go to the hospital 2 or 3 times a week for follow ups. I have to stay here until they are satisfied everything is working as planned.

I have had a few good days mixed in with mostly bad days. No appetite, pain, hair falling out, withdrawal from the percosets, and just plain fatigue.

I have the best Drs and nurses taking care of me. After being sent to the cancer facility called Hope Lodge, I have had two caretakers, besides my wife, that are with me 24/7. Sarah and Pat, have managed to keep me on my scheduled meds and get me back and forth to all my doctor appointments.

This last month has been no fun! There were times I felt like I would never get better, and there have also been days that I felt good and just wanted to go home! I’m following the Drs orders and believing I will be just fine in a few days.

My next appointment is Tuesday. Providing my magnesium numbers and platelets are good, he said they would remove my pic line and send me home!

Pray for my results to be good. I miss home and seeing my wife everyday. I miss my children and grandchildren also. And yeah, I miss my dogs and cat!

I will be giving more detail in future posts. It is still hard for me to focus and/or stay focused. It has been a long weary month and as I remember more details I will report them. This bone marrow transplant is something I would hate to have to see anyone go through. The encouraging words and prayers I have been given over this last year have been essential in my healing process. The love and kindness shown to me from people I have never met, has made me break down and bawl several times. There has never been a moment I felt like I was going through this alone. New friends I have made during this last year have been awesome!

I love you all and covet all of the prayers you can send up!

Joe

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Part 7 (But) I’m not dead yet

Reborn Through Stem Cell Transplant!

It has finally happened! After being sent home two weeks ago because the C-Diff infection had returned, I was finally given the big dose of chemo on Thursday to kill all my stem cells, then being injected Friday, with the stem cells they harvested three weeks ago, I am officially on the road to recovery!
I woke up Friday morning with muscle spasms and when I talked I was stuttering. They are adjusting my meds to try to figure out the cause of the spasms and stuttering. I have been given diladid in place of the Percocet I have been on. I have had as much as four hours of total relief of the back pain that never left before. I can’t express how good it is to be pain free, even if it is only for a few hours.
Anyway, not a lot to report about the last couple days. The nurses and doctors are saying it is usually around day ten that the fact that I have no immune system will become evident, by how sick I will start feeling. I’m believing the prayers that are being said for me are going to carry me through this phase, and I will not get as sick as they are predicting.
They said it will be around that same 10 day period my hair will fall out. I bought a colorful beanie cap to keep my head warm should my hair actually fall out. The nurses are all digging my hipness. Several said they want a hat just like it.
I will try to post again in a few days. It will depend on how I am feeling. I am going to try to add one of my new favorite photos to this post. It is a picture of my wife and daughters surrounding me. It is the first time in four years all four daughters have been in one place.

All four in one place!

All four in one place!

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Cancer Is Not Funny, But It Can Be Hilarious!

Disclaimer: I am trying a different approach to how I present the evidence in this blog. It is getting closer to what I picture it looking like.

A Twisted Look At Death, And Why It Will Never Take Me Alive!

We all make important decisions throughout our lives. Think about the most important decision you have ever made. Was your most important decision to get married, buy a house, buy a car, have children, take a certain job, move to a certain state or town, or maybe you just had to decide if it was going to be strawberry or grape jelly on your sandwich!

My two most important decisions, in order of importance:                                                                          Accepting Christ as Lord and Savior! 18 years ago.                                                                                                 Getting married to my beautiful wife! 38 years ago.

While there have been many decisions in between, the most recent one is, I may die from cancer, but cancer will not kill me! That may sound confusing. Let me explain. I have cancer, that is true. It is a type of cancer that can not be cured. It is called multiple myeloma. It is a cancer of the plasma cells. It is ugly and causes a great deal of bone pain and kidney problems. I was diagnosed when my kidneys had gone into complete renal failure. I had evidence of at least 18 broken or fractured ribs at the time of diagnosis. I may die from cancer, but I am going to live to the fullest until that time comes. Let me explain…

I could have chosen to spend my time reading and studying (there is nothing wrong with that) about this “beast” as many of us, who have the privilege of having it, call it. Instead, I have chosen to live! I will learn enough to be able to make decisions, but I won’t spend all my waking hours studying and worrying about this “beast”. I will not give it power to control me. I will not allow it to keep me from being me! I love to study!

I will be doing the treatments, taking the pills, having the transplant, and going to all the doctor appointments, but, I’m going to enjoy every minute I can! I will wear a pair of Sponge Bob or Cookie Monster, underwear to amuse the docs and nurses, just so I can have fun, even in the hospital. I may even walk down the hall with my gown untied and no underwear on. Whatever it takes to get a smile!

I take enough pain pills to knock a horse out. It rarely interferes with my daily goals. It cuts the edge on the pain on a good day, and barely touches it on others days! The days the nausea is so bad I can’t get out if bed, I read, watch tv, just started teaching myself to play guitar, or just sleep. This is a brief description of what this “beast” does to me. From here on out, I will focus on living!

All of my best times are spent with my wife. She is my best friend and caretaker. No matter what I go through, she is by my side. Christmas Eve 2013 I was put in the hospital with a terrible infection, located between my scrotum, and my anus. They had to remove two places that each measured about 3 inches long, about 2.5 inches wide, and to the bone deep! To this day I have never seen it, either in a picture, of which the doctor tried to show me once, or any other way. I can’t possibly bend over that far! I spent two months in the hospital and rehab facility. Toward the end of that time, they taught my wife to pack the wounds. They had to be packed twice a day. The best part of that experience was the diladid they gave me for pain about 30 minutes before the removal and replacement of the packing. Well, the last two weeks I was in the rehab facility, they taught my wife to do the packing. In order to get to go home, I had to be able to have the packing done without the benefit of the diladid! The moral of the story, every day and night for two more months, my wife had to look at my butt! She did this without ever once “cracking” a joke. She was always more caring than the nurses.

That’s about all the fun I can tell you about now. Next time, or some time in the future, I will tell you about some of my favorite questions to ask someone with cancer! You know, hey man, you lost weight, you on a diet?

Joe

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Part 6 (But) I’m not dead yet

No transplant for me!

My wife and I left for UAB on Tuesday afternoon. We stayed at the UAB Townhouses, a place for cancer patients from out of town. Wednesday morning, we checked in to the Bone Marrow Transplant Unit. I told the doc, I had started having diarrhea Sunday. They ran a test, and sure enough the C-Diff infection had returned from a couple of weeks prior.

They give be a couple units of flagyl  Wednesday, then one more Thursday. It didn’t stop the diarrhea. Doc says with the complications I have already had, he would rather give my body a week to strengthen up. He said there was a 50/50 chance everything would be ok if we went ahead now. I thought, well, no, I’ll come back next week after a round of antibiotics.

We left Thursday night and got home around midnight.

Friday morning, I’m not feeling too good. I made it to pick up my prescription, and now I’m looking at a few days of recovery from the C-Diff and hopefully returning next week. 

This has not been an easy battle. There have been times I have been so sick, it didn’t seem real. Through it all, my wife has endured missing work, taking care of me when I can barely move, worked many late hours at her job to keep up, feeding me, cleaning me up, transporting me and loving me. She has never gotten mad at me, or lost her patience with me. She has continually assured me that everything is going to be fine. My youngest daughter has also been a big, big help. She too has missed work to take me places and to help take care of me. Fortunately, for me, she is now in school to be a nurse.

Anyone that has battled cancer or any other devastating illness, knows the power of just having someone there to help keep your spirits up! If you know anyone that faces these battles on their own, please step in and help them. I can understand how someone that has been on their own could become bitter. If you are reading this, and know of such a person, I beg you to take the time, have patience and do all you can do to reach out to them. It could be the difference of life and death! At the very least, it could help them feel loved and give them extra strength to fight!

Recently, I read a blog from a young 30 something mother of two, that is dying of cancer. It made me very appreciative of the fact that I have had a very good life. I have been able to watch my four daughters grow up and see all of them have families of their own. This young mother is very courageous and is preparing videos and has written letters to be given to her children at certain times in their lives. I find it heart wrenching that she is able to think ahead and make sure her children know how much she thought of them. If I ever get this blogging and web page stuff figured out, I will post the link to her blog.

Unless something else comes to mind, I will post again in a few days.

Be blessed!

 

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Part 5 (But) I’m not dead yet

 

Transplant Time!

Tomorrow is the big day! My transplant! I look forward, to getting this transplant over with, and hitting the road to recovery!

Yes, they told me I will lose my hair, have a terrible taste in my mouth, my gums will break out with some kinda oozy stuff, I will be in pain, diarrhea will surely be present and that is the good points! Well, comparatively speaking anyway. Compared to how I have been feeling, I say bring it and let’s get through it quick.

It may be a few days before I am up to posting again. Just keep praying for my wife and I. We are convinced the power of prayer has carried us through to this point. 

I’m looking forward to reading a couple of books while I go through recovery. I also bought a guitar Saturday, because I have always wanted to learn to play.

I have so many friends that have offered to help us through this time, it has been somewhat overwhelming. I have had people I have never met, offer to come and sit with me during the three to six weeks after I get out of the hospital. I have to stay near the hospital after incase I were to need blood or fluids. I have to have 24/7 care until they determine my immune system is back up and running. 

I still have some packing to do, but I wanted to let everyone know what is happening, incase I am unable to write for a few days. I am grateful for the comments that my friends and folks I have never met, have made on my posts. I’m sure, moving forward, I’m going to have a lot of fun stuff to write about.

Please remember to let me know about your blog, if you have one, so that I can have something to read.

God is good all the time!

Till next time

image

 

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Have Friendships Ended Since Diagnosis

friend noun \ˈfrend\
: a person who you like and enjoy being with

: a person who helps or supports someone or something (such as a cause or charity)

This according to Merriam Webster dictionary is what a friend is.
I’m sure there are many reasons we lose some “friends” after being diagnosed with cancer or some other deadly disease.

It could be they are not sure what to say, or worse they fear saying the wrong thing.
I have many friends, that is to say, people I like and enjoy being with.
It could be we have failed to let our friends know, this is just another phase of our friendship.
It could be they may not want to deal with the fact that death could happen to anyone at anytime. You know, sweep the problem under the carpet and ignore it. It could be, they are worried about “catching” what you have.

I’m sure everyone can think of other reasons we see our friends leave.

If we find ourselves loosing friends, we must take partial blame. It is during our battles with cancer and other diseases that we need our friends the most.

This is a very short blog today. However, I hope it brings to light how we as the “sick” one needs to help those friendships over the initial hump of our predicament.

Have a blessed day!

P.S. I have also made new friends as a result of my illness.

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