"The road is done. You're home Joe..." - this was a post on a group page on Facebook, it was under a link to YouTube.com for the song "Amazing Grace".
I had met Joe 9 or 10 years ago where I worked at the time. Joe was one of the good guys, you could ask him anything and he would do his best to help out. He was a straight shooter and always got to the point, something I've always appreciated.
Joe passed away on Saturday July 31, 2010 losing his battle with stomach cancer he was 41.
I learned of Joe's passing as we (my family) were getting ready to go to the pool. The day was beautiful and although I cannot get in the water I can still grab some sunshine. There were clouds in the sky and as I watched my wife, daughter and son head into the pool, I looked up and saw a very prominent image in the clouds. I saw what looked like a very visible angel. There wasn't a face, just a body, a very round head, wings and just above the head a halo. It was amazing.
Even though I haven't seen or talked with Joe in a while I'll miss him.
There's just no easy way to hear about it and there's no easy way to talk about it, CANCER SUCKS!!
Joe is survived by his wife and 3 children ages 6, 4, and 6 months.
Wednesday, August 4, 2010
Friday, July 16, 2010
Therapy
As I entered the room a little before 7 pm, I could hear the piano loud and clear playing some great music. I took my seat at the table and was there about 5 or 10 minutes enjoying the sound coming from the opposite side of the room when I decided to look up and noticed it was not a piano, but rather a keyboard that was being played. A few minutes later, I looked over again and for the first time that the person playing the piano was a young, and I mean young guy. We found out later that he was only 18 and only had graduated from high school a month ago.
This guy, could play almost anything, The Beatles, Billy Joel, you name it, he could play almost anything and without sheet music - it was quite impressive. It was hard to miss an older guy sitting at a table by himself enjoying the music, I thought it was his dad, but ended up being his uncle. Although I am not sure if his uncle was there to help carrying the stuff in and out or if he was there just to enjoy the music, you could tell he was enjoying himself and it brought great pride to me knowing that I want to do those same things and support my children with what they decide to do when they are older.
It was a great escape for me indeed to meet up with a bunch of guys for our monthly ritual to go out and "relax" after our meeting. This month, the meeting was cancelled, but we all agreed we needed to still have our "meeting". I really have not had much of a connection with others since the middle of last year when all of this started to go into a downward spiral. It is nice to get out with the guys and talk about things that really when you look at it are important at the time, but with a little help from a friend solutions seem to be found.
It is usually toward the end of the night, but someone usually asks how everything is going, which generally leads into other questions about what is going on, or how the process works, or even about the supplies that occupy my entry way closet. Those small simple conversations are usually my release to help me feel better about everything that is going on. There is something about explaining it to others that helps me realize, that "hey, this isn't so bad and can certainly be worse!!"
Thanks for the conversation and company guys and a big thanks for helping me find an outlet to get it all out!!
This guy, could play almost anything, The Beatles, Billy Joel, you name it, he could play almost anything and without sheet music - it was quite impressive. It was hard to miss an older guy sitting at a table by himself enjoying the music, I thought it was his dad, but ended up being his uncle. Although I am not sure if his uncle was there to help carrying the stuff in and out or if he was there just to enjoy the music, you could tell he was enjoying himself and it brought great pride to me knowing that I want to do those same things and support my children with what they decide to do when they are older.
It was a great escape for me indeed to meet up with a bunch of guys for our monthly ritual to go out and "relax" after our meeting. This month, the meeting was cancelled, but we all agreed we needed to still have our "meeting". I really have not had much of a connection with others since the middle of last year when all of this started to go into a downward spiral. It is nice to get out with the guys and talk about things that really when you look at it are important at the time, but with a little help from a friend solutions seem to be found.
It is usually toward the end of the night, but someone usually asks how everything is going, which generally leads into other questions about what is going on, or how the process works, or even about the supplies that occupy my entry way closet. Those small simple conversations are usually my release to help me feel better about everything that is going on. There is something about explaining it to others that helps me realize, that "hey, this isn't so bad and can certainly be worse!!"
Thanks for the conversation and company guys and a big thanks for helping me find an outlet to get it all out!!
Saturday, May 29, 2010
My Big Fat Feet
Vanity has gotten the better of me. I surprisingly have adjusted to just about everything, everything but the way my feet look when I am retaining water. Probably more noticeable are my ankles which swell to a size bigger than grapefruit.
I really thought that I would be caught up in the tubing protruding from my stomach. I thought that would be the 1 and only thing I would have to overcome with this process, but when I look down and see my feet, it really bothers me. Actually I have adapted to the tubing pretty well and I really only notice that when I am doing an exchange.
I do have great news and that is I was approved to do nighttime dialysis. This means that I will be able to hook up to a machine at night and have dialysis while I am sleeping. By having this done, I will not have to do exchanges during the day, which means I can get back to a little more normal of a life instead of being hooked up to an IV pole 4 times a day!!!!
I know I will adjust to the whole swollen feet thing in time, and within a few weeks my life will be a little more normal until my transplant. I am thankful I am able to hold onto the little things and small victories as they come my way!!!
I really thought that I would be caught up in the tubing protruding from my stomach. I thought that would be the 1 and only thing I would have to overcome with this process, but when I look down and see my feet, it really bothers me. Actually I have adapted to the tubing pretty well and I really only notice that when I am doing an exchange.
I do have great news and that is I was approved to do nighttime dialysis. This means that I will be able to hook up to a machine at night and have dialysis while I am sleeping. By having this done, I will not have to do exchanges during the day, which means I can get back to a little more normal of a life instead of being hooked up to an IV pole 4 times a day!!!!
I know I will adjust to the whole swollen feet thing in time, and within a few weeks my life will be a little more normal until my transplant. I am thankful I am able to hold onto the little things and small victories as they come my way!!!
Monday, May 17, 2010
The Clock is ticking...
Not only is the clock ticking for me while I am on the transplant list, there is another clock... the clock of Medicare. Although I am eligible now to go on Medicare, after I have been on dialysis for 30 months, I am forced to take Medicare as my primary health insurance.
I think that it is great that there are systems in place to help people with the high cost of health care, I have a difficult time understanding why I have to take Medicare when I already have health insurance. The good news is I still get to keep my current health care, but it will drop to my secondary coverage.
The upside that I see is that I will have more coverage, not yet understanding what it is, or how the coverage will affect me. From what I understand, for the cost of of dialysis it is wonderful. As far as what else it covers, I am not sure, I hope it is also wonderful.
The downside is that when I am forced into the Medicare coverage, I am also forced into paying the premium for the coverage, so I will have the joy of paying for two health insurance coverages. I could drop my current coverage, but then my family will go without health insurance, since I am the only one eligible for the Medicare coverage.
Like I said, I am glad that there are systems in place to help with the high cost of health care, but to be forced into a program that I do not want is something I do not agree with. In my opinion, the coverage should be for people who are not on a company plan and would be declined if they applied for an individual plan.
I think that it is great that there are systems in place to help people with the high cost of health care, I have a difficult time understanding why I have to take Medicare when I already have health insurance. The good news is I still get to keep my current health care, but it will drop to my secondary coverage.
The upside that I see is that I will have more coverage, not yet understanding what it is, or how the coverage will affect me. From what I understand, for the cost of of dialysis it is wonderful. As far as what else it covers, I am not sure, I hope it is also wonderful.
The downside is that when I am forced into the Medicare coverage, I am also forced into paying the premium for the coverage, so I will have the joy of paying for two health insurance coverages. I could drop my current coverage, but then my family will go without health insurance, since I am the only one eligible for the Medicare coverage.
Like I said, I am glad that there are systems in place to help with the high cost of health care, but to be forced into a program that I do not want is something I do not agree with. In my opinion, the coverage should be for people who are not on a company plan and would be declined if they applied for an individual plan.
Monday, May 3, 2010
That Feeling
I was standing at the deli counter at the grocery store when all of a sudden that feeling came over me. I had only had that feeling one other time, but it was at home and things are different when you don't have the security of being home. I took my sweatshirt off and tried the best I could to shrug it off since I was still in the beginning phase of grocery shopping. I received everything I requested and at that time knew I was not going to be able to finish the rest of the shopping.
I was standing there with the cart having the produce and deli items checked off my list with a bunch of stuff yet to purchase and with Tucker looking at me as innocently as possible when I had no idea what to do. I knew I had to do something and somewhat quickly or I was going to fall over. The rush of heat over me and light headedness, I had to sit down. I surveyed the area and could not see a chair any where in sight, if only I had turned around I would have seen a whole area of tables and chairs, after all I was in the deli area where some people go in to eat. This soon to be embarrassing situation could have been avoided.
After what seemed like forever, I decided to go over out of the way and just sit on the floor. I looked up at Tuck and he was just sitting there, smiling and hanging out. It was not long when a manager who was taking inventory had come over to me and asked if I was OK and asked if I would like some water, I accepted and another lady had come over to comfort Tuck and stay with me while the manager went to get the water.
After a couple of minutes, I was feeling better and the manager had offered a rushed check-out and have someone help me get to my car. I was feeling better as I started walking to the register and the manager had said, "I'm Terri a manager here". I thanked her for everything while we were walking and told her my name and explained my situation. I got to the register and checked out and made my way home.
When I got home, I was feeling a lot better, but still had the need to lie down. On the way home, Tuck had fallen asleep, and I could only feel for the little guy. Here we were on a Saturday outing and the next thing he knew, I was sitting on the floor and he had strangers talking to him. It is one thing for me to have to go through this, and for me and my family to make sacrifices, but that was a little too much for me.
I guess it is just another thing to add to my list of limitations. I know it is not a big thing, but the opportunity to take a solo trip out with one of the kids is something that is fun and exciting and what parent does not like to hang out with their kids one on one? I understand this is not a forever thing, just temporary, but I am looking forward to becoming normal again.
I was standing there with the cart having the produce and deli items checked off my list with a bunch of stuff yet to purchase and with Tucker looking at me as innocently as possible when I had no idea what to do. I knew I had to do something and somewhat quickly or I was going to fall over. The rush of heat over me and light headedness, I had to sit down. I surveyed the area and could not see a chair any where in sight, if only I had turned around I would have seen a whole area of tables and chairs, after all I was in the deli area where some people go in to eat. This soon to be embarrassing situation could have been avoided.
After what seemed like forever, I decided to go over out of the way and just sit on the floor. I looked up at Tuck and he was just sitting there, smiling and hanging out. It was not long when a manager who was taking inventory had come over to me and asked if I was OK and asked if I would like some water, I accepted and another lady had come over to comfort Tuck and stay with me while the manager went to get the water.
After a couple of minutes, I was feeling better and the manager had offered a rushed check-out and have someone help me get to my car. I was feeling better as I started walking to the register and the manager had said, "I'm Terri a manager here". I thanked her for everything while we were walking and told her my name and explained my situation. I got to the register and checked out and made my way home.
When I got home, I was feeling a lot better, but still had the need to lie down. On the way home, Tuck had fallen asleep, and I could only feel for the little guy. Here we were on a Saturday outing and the next thing he knew, I was sitting on the floor and he had strangers talking to him. It is one thing for me to have to go through this, and for me and my family to make sacrifices, but that was a little too much for me.
I guess it is just another thing to add to my list of limitations. I know it is not a big thing, but the opportunity to take a solo trip out with one of the kids is something that is fun and exciting and what parent does not like to hang out with their kids one on one? I understand this is not a forever thing, just temporary, but I am looking forward to becoming normal again.
Friday, April 16, 2010
Being Average
I have had a lot of progress in the last week, I am now flying solo with my dialysis exchanges!! I do 4 of them a day and to be honest, like everything else, this will take a little time getting used to. The biggest hurdle I need to get over is my confidence. I spent the last week doing the exchanges over and over again, but doing them at home somehow is different for me.
It is not hard to do, and really not nearly as time consuming as I thought they would be. I have found the most challenging things to be getting the bags to the proper temperature and getting all the required supplies. Now gathering the supplies is not much of a challenge as to remember to get everything the first time.
The funniest thing that has happened is Torre comparing me to a new born baby this morning. She said "think about it, you are now on a whole new schedule, a new eating schedule, and you have to do the exchanges (comparing it to changing a diaper change), you are like a new born baby!!" It cracked me up and helped lighten my mood, as much as this is a difference in my life and as I adapt, she helps me see the brighter side of things!!
As for the exchanges, they take less than an hour to complete, which includes getting what I need, draining and then filling again. I think once I become proficient with it, I can get it down to 30 to 45 min which I don't believe is bad at all.
The next milestone I have to look forward to is after about 6 weeks, there is a chance I can get on a machine that will do the exchanges for me overnight, so then I will just hook up at night and unhook in the morning. Most people qualify for this type of treatment and as the nurse said yesterday, I am "average". Average meaning that I drain and fill in an adequate time period and I am pulling off an adequate amount of fluid each time, which is what they seem to be happy with. If this is what it means to be "average", then I am happy to be just that Average!!
It is not hard to do, and really not nearly as time consuming as I thought they would be. I have found the most challenging things to be getting the bags to the proper temperature and getting all the required supplies. Now gathering the supplies is not much of a challenge as to remember to get everything the first time.
The funniest thing that has happened is Torre comparing me to a new born baby this morning. She said "think about it, you are now on a whole new schedule, a new eating schedule, and you have to do the exchanges (comparing it to changing a diaper change), you are like a new born baby!!" It cracked me up and helped lighten my mood, as much as this is a difference in my life and as I adapt, she helps me see the brighter side of things!!
As for the exchanges, they take less than an hour to complete, which includes getting what I need, draining and then filling again. I think once I become proficient with it, I can get it down to 30 to 45 min which I don't believe is bad at all.
The next milestone I have to look forward to is after about 6 weeks, there is a chance I can get on a machine that will do the exchanges for me overnight, so then I will just hook up at night and unhook in the morning. Most people qualify for this type of treatment and as the nurse said yesterday, I am "average". Average meaning that I drain and fill in an adequate time period and I am pulling off an adequate amount of fluid each time, which is what they seem to be happy with. If this is what it means to be "average", then I am happy to be just that Average!!
Sunday, April 11, 2010
Perspective
I had the opportunity to participate in a candle light vigil tonight to help raise awareness for Organ and Tissue donation. It brought it home to me that this is so much bigger than I am. As people got up and told their story of how organ donation has touched their lives and with my wife's eyes filled with tears I was so humbled.
I recently went back and read each of my blog posts and it seems that I am pretty repetitive. The message I would like to send, is that no matter what situation you are in, your outlook is the most important. I have friends and know people who are going through some pretty tough stuff, and if you ask them they think what I am going through is much more difficult, but when I hear what they are going through I think they are going through much more difficult times.
For me, as I have said before there is an end to what I am going through, sure, it may take a little time, but it is there. Unfortunately, I have some friends who are going through relationship struggles some of which either are or have resulted in divorce. Other friends have struggled with life threatening disease and illness who toe the line daily with living and dying.
That is why I say to me it all about perspective with the situation you are facing. Keep your chin up and face whatever it is you have to face head on with the best attitude you can - it will make a difference in the end result!! You can do anything you want and as I always say, "The only thing that can limit you is your own imagination!!"
I recently went back and read each of my blog posts and it seems that I am pretty repetitive. The message I would like to send, is that no matter what situation you are in, your outlook is the most important. I have friends and know people who are going through some pretty tough stuff, and if you ask them they think what I am going through is much more difficult, but when I hear what they are going through I think they are going through much more difficult times.
For me, as I have said before there is an end to what I am going through, sure, it may take a little time, but it is there. Unfortunately, I have some friends who are going through relationship struggles some of which either are or have resulted in divorce. Other friends have struggled with life threatening disease and illness who toe the line daily with living and dying.
That is why I say to me it all about perspective with the situation you are facing. Keep your chin up and face whatever it is you have to face head on with the best attitude you can - it will make a difference in the end result!! You can do anything you want and as I always say, "The only thing that can limit you is your own imagination!!"
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