After my recent setback at the oncologist office, I was not looking forward to my urology visit. OK, no one ever looks forward to their urology visit, not even the urologist (I mean, who wants to look at that all day long?). However, I was looking forward to it even less this time.
For anyone that hasn't had a urology appointment this is how a typical urology visit goes. No matter when you have been there last, there will always be an additional 312 pieces of paperwork to fill out, most of them involve digging through your wallet for various insurance cards, IDs, addresses of estranged relatives, etc. Right in the middle of the paperwork, they will call you back up to the counter and give you a cup. This is not for drinking out of, even though it is already personalized with your name on it. So then, you have to figure out what to do with all the contents of your billfold that are spread on the seat next to you to fill out page 188, paragragh H, subsection 22.3.1 of the form verifying that you read the Paperwork Reduction Act, while you go off to fill the cup.
Once in the restroom one of two things will happen. It doesn't matter how much you have "studied" for your urine test, there will still only be these two options. Option one, you stand there awkwardly with the cup in one hand, and..."it" in the other, like two gunslingers at high noon staring down each other, neither one willing to draw first. You will stay like this for 30-45 minutes waiting for the flow to begin, which will happen precisely when you hear the nurse out in the waiting room calling your name. Or the only other possibility is you start going immediately and your volume of output is approximately the same gallons per minute rate of Lake Erie flowing into Niagara, which is all well and good, until you realize you are holding a cup with the capacity to hold the juice from a single grape. At this point you have to decide, are you going to overflow on your hand or spray all over the room trying to set the cup down midstream. These are the only two outcomes to the second situation. Don't try to be a hero and think that you can pull off some great acrobatic move to save the sample and also keep the floor dry. That kind of cavalier attitude will only result in wet clothes and/or soggy paperwork.
Once you have been called back to the doctor's office, you will remain sequestered there for roughly two and a half hours. Around you will be pictures of kidney stones resembling medieval weapons...except with more spikes, disgusting diagrams of every genital malady known to man (and some animals), and cutaway anatomical models of sex organs that will make you never want to have sex again. You will sit here alone in the Office of Horrors until you finally get the urge to pee because you drank too much water for the "cup" and as soon as you pull out your phone to try to get your mind off of your situation, the doctor will walk in and assume you are taking pictures of the plastic cutaway penis.
It is at this time, the doctor will ask you questions having nothing to do with why you are there. "Do you have to urinate more frequently at night if there is a full moon? Have you ever tried to scratch the back of your knee with your elbow? Do penguins sweat? Do you like gladiator movies?" And if you are lucky, you drop your pants, get a quick slap and tickle, pull up your pants, and get charged a couple hundred dollars. However, I am going to issue a warning!!!
If you have a serious concern, by all means, now is the time to ask the doc about it. After all, it was my own insistence, after the nurse missed my cancer initially, that resulted in my cancer diagnosis. Other than that I have found the best thing to do is DO NOT ASK THE UROLOGIST ANY QUESTIONS!!! See, if it's time for a prostate exam, it's an important part of a male's health and we all need to unpucker and endure it. However, any added information or question for some reason results in a bonus prostate exam. I don't know if they get paid more per violation, or all the doctors have a bet, or what, but every question results in a buttsploration. "Doc, is it normal for your urine to be a little darker if you have been sweating a lot on a hot day?" DROP YOUR PANTS AND BEND YOUR KNEES! "Doctor, is just waking up once a week in the middle of the night to pee excessive?" HERE COMES THE BIRDIE!! "How's your golf swing coming, doc?" KEEP AN EYE ON YOUR BALL AND GET READY FOR THE FOLLOW THROUGH!!!!
It was for this reason that I decided NOT to ask when I would be done visiting him. After all, every other time I had been asked, I was always told that I would have to see him for the rest of my life, and the next thing I would hear is the snap of a rubber glove behind me. So as I my freshly lubricated buttocks swished their way to the front desk to make my next appointment, I was pleasantly surprised to be told that I wouldn't need to come back unless there was a problem! After all, I had already been devastated by the news a couple months earlier that I was not being released by the oncologist when originally planned. It seemed that following months of bad news from doctors, I finally heard something I wanted to hear...even if I was walking funny.
Now I just want to clarify one thing here, testicular exams and prostate exams are very important, and there is a peace of mind that one has after clear test (well, that comes after the initial shock). And even though I was released from my urologist I will continue to do self exams (testicular self exam, I am not flexible enough for the other) and will still be getting the scheduled exams from my family doctor, oncologist, dentist, butcher, and anyone else with a white coat on (at least it seems that way sometimes). But for now I can relax...without being told to relax and bend over...and celebrate graduating from one doctor and hopefully being that much closer to being a considered a cancer survivor and not a cancer patient.
Showing posts with label oncologist. Show all posts
Showing posts with label oncologist. Show all posts
Thursday, September 17, 2015
Tuesday, June 16, 2015
PTSD and Cancer?
Having recently completed a trip that I had planned for a while, one of my bosses asked me how it went. I told her how the trip had special significance to my cancer fight and how it took on a new meaning after not being released from oncology as I hoped, and I talked to her about how the trip affected me. I made the comment to her (also someone who fought her own cancer battle), I said "It's weird the way certain things trigger these memories and feelings, it's almost like PTSD." She replied "It is PTSD!"
Her words struck me as odd. I know people with PTSD, and some of them have a lot more to worry about than I do. After all I was basically disappointed that I have to keep going back to the doctor, that I'm still a cancer patient. That's all. Yes, there are certain triggers, certain things that cause memories to come flooding back, but that's just life. That happens with lots of things right? Every time I smell cow manure, I get flash backs to the county fair and start look for deep fried anything.
Later on that day, I just Googled "PTSD" and "cancer", thinking I would find a few anecdotes here, or casual observations there. What popped up on the page astounded me. Studies, LOTS of studies on the subject. And they all came to basically the same conclusion, it's not just in our heads...well it is, technically, I guess...but a lot of us are experiencing it.
There were tons of articles but the same results seemed to be popping up in every study. One out of every three of us experience this. It only shows up AFTER active treatment, usually when patients are in their monitoring stage. It can start as soon as 6 months after active treatment, but many experience it at about the three year mark. And the trigger to cause the onset of the effects doesn't necessarily have to be cancer related, but it brings back the cancer thoughts.
Before I go any further, I don't think I have "post traumatic stress disorder". As I mentioned, I know people that have PTSD, and I wouldn't even begin to compare my problem with theirs. However, I do have SOMETHING going on. And the research shows that clearly a lot more of us do too.
That's when I started getting a little angry. Further reading on the studies shows that very few oncologists even realize that this is going on.
For those that haven't been to an oncology monitoring appointment it goes like this, you sit in a sterile waiting room (literally, because chemo knocks out your immune system). You look at the pile of old hard candy (because chemo also dries out your mouth), trying to decide if you are desperate enough to get a piece. Then the phlebotomist calls you, puts you on the scale while you try to claim that your shoes weigh 50 pounds a piece, takes your vitals, and sucks out about 4 gallons of blood for various tests, spells, and incantations. Then, before they shuffle you off to wait in the oncologist office, they ask where you are on the pain scale, physically and mentally (you know that little scale of various emojis before they were emojis, ranging from happy face emoji to frowny crying face emoji). That's where it dawned on me when the breakdown was.
Going into my last oncology appointment, I was excited. I had my monitoring extended once, but had been told by everyone...except the oncologist, that this would probably be my last appointment ever. When asked where I was psychologically, I picked a "3" out of "10" ("10" being the most stressed). After I was told to continue monitoring I was absolutely devastated. Had anyone stopped me on the way out the door and asked me to give my number on that scale again, it would have been an "8" or a "9". This was the failure. This is where no one is paying attention. And I don't necessarily blame the oncologists. Like many of the studies discovered, oncologist are trained to fight cancer, not delve into one's psyche. Most doctors aren't cross trained. You don't go to the vet, have them spay or neuter your dog, then ask them if your own tooth has a cavity...well I know one person that might, but she's the exception.
One in three is a pretty significant number. That is what surprises me. How can 33% of us be ignored and forgotten about? If I handed you and ice cream cone and said it's $5 and there is a two in three chance it will taste delicious, but a one in three chance it will taste as bad as a rock concert restroom smells, you probably wouldn't do it. There is a 67% chance you will have fun on this roller coaster, but a 33% you will get seriously hurt or killed...are you going to wait in line?
Although, there is tons of research, when I went to the major cancer resources to find out what help there was out there, the websites had surprisingly little information. The research is out there. It all basically says the same thing, but no one really seems to know what to do with that knowledge. And in the mean time people are falling through the cracks. I haven't thought about harming myself, but the studies do have morbidity rates that are higher than people not going through it.
As in many things with cancer, we need to start educating each other, and passing along what helps us, and that its a normal feeling, and how to get help. We've always been good about warning about cancer insomnia, scanxiety, and chemo brain, but not this whether it truly is PTSD or whatever it is. Maybe it's because it happens after most of us have left our support groups or no longer get the longer talks with the oncologist and their team. But we have to make a change somewhere. We have to get the word out. We have to help each other. We have to do something.
Her words struck me as odd. I know people with PTSD, and some of them have a lot more to worry about than I do. After all I was basically disappointed that I have to keep going back to the doctor, that I'm still a cancer patient. That's all. Yes, there are certain triggers, certain things that cause memories to come flooding back, but that's just life. That happens with lots of things right? Every time I smell cow manure, I get flash backs to the county fair and start look for deep fried anything.
Later on that day, I just Googled "PTSD" and "cancer", thinking I would find a few anecdotes here, or casual observations there. What popped up on the page astounded me. Studies, LOTS of studies on the subject. And they all came to basically the same conclusion, it's not just in our heads...well it is, technically, I guess...but a lot of us are experiencing it.
There were tons of articles but the same results seemed to be popping up in every study. One out of every three of us experience this. It only shows up AFTER active treatment, usually when patients are in their monitoring stage. It can start as soon as 6 months after active treatment, but many experience it at about the three year mark. And the trigger to cause the onset of the effects doesn't necessarily have to be cancer related, but it brings back the cancer thoughts.
Before I go any further, I don't think I have "post traumatic stress disorder". As I mentioned, I know people that have PTSD, and I wouldn't even begin to compare my problem with theirs. However, I do have SOMETHING going on. And the research shows that clearly a lot more of us do too.
That's when I started getting a little angry. Further reading on the studies shows that very few oncologists even realize that this is going on.
For those that haven't been to an oncology monitoring appointment it goes like this, you sit in a sterile waiting room (literally, because chemo knocks out your immune system). You look at the pile of old hard candy (because chemo also dries out your mouth), trying to decide if you are desperate enough to get a piece. Then the phlebotomist calls you, puts you on the scale while you try to claim that your shoes weigh 50 pounds a piece, takes your vitals, and sucks out about 4 gallons of blood for various tests, spells, and incantations. Then, before they shuffle you off to wait in the oncologist office, they ask where you are on the pain scale, physically and mentally (you know that little scale of various emojis before they were emojis, ranging from happy face emoji to frowny crying face emoji). That's where it dawned on me when the breakdown was.
Going into my last oncology appointment, I was excited. I had my monitoring extended once, but had been told by everyone...except the oncologist, that this would probably be my last appointment ever. When asked where I was psychologically, I picked a "3" out of "10" ("10" being the most stressed). After I was told to continue monitoring I was absolutely devastated. Had anyone stopped me on the way out the door and asked me to give my number on that scale again, it would have been an "8" or a "9". This was the failure. This is where no one is paying attention. And I don't necessarily blame the oncologists. Like many of the studies discovered, oncologist are trained to fight cancer, not delve into one's psyche. Most doctors aren't cross trained. You don't go to the vet, have them spay or neuter your dog, then ask them if your own tooth has a cavity...well I know one person that might, but she's the exception.
One in three is a pretty significant number. That is what surprises me. How can 33% of us be ignored and forgotten about? If I handed you and ice cream cone and said it's $5 and there is a two in three chance it will taste delicious, but a one in three chance it will taste as bad as a rock concert restroom smells, you probably wouldn't do it. There is a 67% chance you will have fun on this roller coaster, but a 33% you will get seriously hurt or killed...are you going to wait in line?
Although, there is tons of research, when I went to the major cancer resources to find out what help there was out there, the websites had surprisingly little information. The research is out there. It all basically says the same thing, but no one really seems to know what to do with that knowledge. And in the mean time people are falling through the cracks. I haven't thought about harming myself, but the studies do have morbidity rates that are higher than people not going through it.
As in many things with cancer, we need to start educating each other, and passing along what helps us, and that its a normal feeling, and how to get help. We've always been good about warning about cancer insomnia, scanxiety, and chemo brain, but not this whether it truly is PTSD or whatever it is. Maybe it's because it happens after most of us have left our support groups or no longer get the longer talks with the oncologist and their team. But we have to make a change somewhere. We have to get the word out. We have to help each other. We have to do something.
PRS Guitars, the Cure for Cancer...
For anyone that doesn't know, right before I had gotten diagnosed with cancer, I had saved up to buy a new PRS guitar. I had sold various things and was finally ready to make my new purchase. When getting ready to go to the store, I saw two separate ads for people selling used PRS guitars and another brand I was wanting to try as well. I realized if I bought used instead of new, I could get TWO guitars instead of one. And we all know, two is twice as good as one. I bought a PRS and the other brand. Later when one of the other sellers finally got around to contacting me back and offered to sell me the other PRS. I was enjoying the one I had, and still had a little bit of money saved, so I bought it as well.
As luck would have it, my surgery limited the amount of weight I could lift. Those PRS guitars I bought were just under the weight limit and were how I passed much of the time recovering from surgery and chemo. I decided to sell some more stuff I wasn't using on ebay (like parachute pants and a disco ball) and get a nice PRS guitar after I got well. I didn't get the chance. For the first Christmas after Chemo, my whole family got together and bought me one. It was a gift I never expected to get and one of the first pics of my son were taken with him holding it. A few days after Christmas, I walked into the music store with what little money I had been saving for a nice PRS (not nearly enough) and there sat the guitar that I had originally been saving up for in the first place, marked down drastically because it literally fell off of the back of a truck and chipped some paint. Although, not nearly as nice as the one my family had just gotten me, I had just enough cash to cover it, and decided to make the PRS story come around full circle by buying the one that made me start the journey in the first place.
Two years ago, I had the opportunity to meet Paul Reed Smith and had gone over in my mind everything I was going to say and thank him for what was basically a coincidence, but it meant a lot to me. All I managed to get out when I met him was my first name and I got too emotional to carry on any further.
Now I would say this is all review to my regular blog readers, but I can't imagine that anyone would actually come back to my page twice, it's really not that good, so that is what you have missed in the past.
As I said on my last post, I was expecting to be done with oncology visits and therefore done with cancer in May. The nurses this past November told me it was customary to schedule something big to celebrate breaking free of the cancer stigma. Paul Reed Smith was opening up the doors to the factory in June, just a few weeks after I was to be released, so that is the trip I planned for. That is the trip that would bring everything full circle. I started my cancer journey with PRS guitars, I would end it with a tour of the factory...except that didn't happen. I didn't get released. I got sentenced to an unknown number of years of continued monitoring.
I rolled into Maryland and on the PRS campus with a bittersweet feeling. This was supposed to be a celebration of being free, instead it was a reminder that I am still going to oncology visits. I am still a cancer patient. I am still living under that threat that I am not free and clear.
Now here is the thing. Paul Reed Smith is an actual guy, not just some made up brand. He's just a guy that likes playing guitars and tried to make a great guitar at good price. He doesn't know any of this is going on. And all I really wanted to do was say "thank you". My wife came with me to a private event that was essentially for the PRS "fan club". Paul was being very cordial and walking around to everyone talking to them, signing autographs, answering questions. He was working the room and making his way over to us. My wife was wanting him to come over, but I knew I wasn't ready. It wasn't the man that was making me emotional, it was the whole process, the whole history. I have had those PRS guitars for only about two weeks longer than I have been dealing with cancer. The two are linked in my mind for eternity. I can't separate the two. One helped me survive the other. I feel silly because it's just a hunk of wood and a little bit of metal, but that's where I spent my time and worked through my problems.
As Paul got closer, I knew I couldn't say thanks this time either. When you have had cancer, there are just certain things that trigger you memories and take you back to that time. It could be a food, a phone call, a doctor's office whatever. For me the flashbacks sometimes take me back to PRS guitars and or back to the urologist office when a guy I have just met asks me to drop my pants and starts playing with my ball. Luckily that only happens in doctors' offices (or what I was led to believe was a doctor's office. Fool me once...) So as Paul got closer, and as my wife got more excited to tell him what I hadn't been able to, I just had everything flood back into my memory. The cancer, the chemo, the celebration that didn't happen, and the seemingly endless years of monitoring. I couldn't take it. I walked out. No explanation, I just walked around to the side of the factory where no one could see me. I squatted in the grass. I walked by the pond. I messaged a good friend. I did everything to try to distract me from what I was feeling. It didn't work as well as I wanted.
I had decided I just needed to go through the factory alone. My wife decided to get something signed by Paul for our son, since ultimately the PRS guitars will be his one day. Cell service was non-existent in the factory and as soon as I emerged, my wife called me and asked where I was. She had gotten the autograph for my son and told Paul that I wanted to say thanks. Paul had recently had cancer affect people in his life and told her he knew exactly what I was going through and started searching for me. She said she would bring me back to him.
She found me, and took me in the tent. Paul had a line of people seeking autographs and I didn't want to interrupt. All of a sudden, he looks up and sees my wife, whispers something to his assistant, and made a beeline for us. I tried to keep it together. All I needed to say was thanks, I knew I could do that much. That is when he put his arm around me, told me what the people in his life had been through, and I broke down as he shared his pain. I did manage to say thanks, but that was about it. But that is what I needed to do. I may have shown up for the wrong reason, but I still accomplished the original mission. A week later, I watched Paul put on a presentation at another show. I no longer had to say thanks. I didn't go up to meet him with everyone else. He knows my pain, I know his, and I finally got to say thanks. Now I just need to learn how to play guitar halfway decent before the oncologist kicks me loose and everything will be complete.
I had decided I just needed to go through the factory alone. My wife decided to get something signed by Paul for our son, since ultimately the PRS guitars will be his one day. Cell service was non-existent in the factory and as soon as I emerged, my wife called me and asked where I was. She had gotten the autograph for my son and told Paul that I wanted to say thanks. Paul had recently had cancer affect people in his life and told her he knew exactly what I was going through and started searching for me. She said she would bring me back to him.
She found me, and took me in the tent. Paul had a line of people seeking autographs and I didn't want to interrupt. All of a sudden, he looks up and sees my wife, whispers something to his assistant, and made a beeline for us. I tried to keep it together. All I needed to say was thanks, I knew I could do that much. That is when he put his arm around me, told me what the people in his life had been through, and I broke down as he shared his pain. I did manage to say thanks, but that was about it. But that is what I needed to do. I may have shown up for the wrong reason, but I still accomplished the original mission. A week later, I watched Paul put on a presentation at another show. I no longer had to say thanks. I didn't go up to meet him with everyone else. He knows my pain, I know his, and I finally got to say thanks. Now I just need to learn how to play guitar halfway decent before the oncologist kicks me loose and everything will be complete.
Monday, June 15, 2015
Goodbye, Oncologist...Oops, Not Yet
Last month I was excited to go to what I was led to believe would be my last, or next to last oncology appointment, either way 2015 would be my final year. The visit before the phlebotomists asked me what I was going to do to celebrate my release. They said it was tradition for most cancer patients to celebrate finally being free with a trip or a big purchase. So, I already had my trip scheduled and booked, I had everything ready to go. On the big day, I took my three year old to see the nurses. They had heard so much about him I wanted him to be able to say "goodbye".
When I was first diagnosed, I was given the option after surgery of doing CT scans approximately every other day (or at least that is what the schedule they presented me with seemed to be) or do a round of chemo and have hardly any CT scans and be done with monitoring a lot sooner. Well...doctors have a tendency to lie to get you to do what they want you to do. I did the chemo, which seemed to be immediately followed by a CT scan. I am not so sure I wasn't getting a CT scan during my infusion. So anyway, that was the first clue that things weren't going according to the schedule I was initially presented with.
The bending of the schedule continued until my three year mark, which is when I distinctly remember originally being told I was going to be cut free. Then the oncologist said it would probably be good to monitor until the five year mark, but we would do less CT scans...then he immediately sent me for a CT scan.
You never know when you are no longer a "cancer patient". I mean the cancer was cut out eight days after we found it. Was that the end? Was it after my chemo infusion? Was it after my chemo brain fog left? When? I will admit, there are advantages to being referred to as a cancer patient. If you get a Diet Pepsi instead of a Pepsi at the drive thru, normally, they would just give you a Pepsi to make up for the mistake. If somehow you can work the words "cancer patient" into why you were devastated to get a Diet Pepsi, you get your Pepsi AND an ice cream. But still I was done being the cancer patient. I was hoping that the Oncologist Code said they could only lie about continuing monitoring one time, then they had to go back to lying about CT scans.
There is a stigma about being a cancer patient. Among cancer patients there is the joke that you always here "you look good" out of a person's mouth first. No one really knows what that means. Do we look better than death? Is that what they were expecting? There are many colleagues that I see a few times a year with whom I used to have normal conversations, ever since my diagnosis they start off the same way. "How are you feeling?" It's just front and foremost on some people's minds. Which in turn, makes it front and foremost on my mind. I was looking forward to being able to say, "I'm finally done with oncology so we can go back to talking about guitars, cars, or some sport that you care about and I don't."
My son and I walked into see the oncologist. The phlebotomist had already said "bye" certain that I was being cut loose, just shy of five years. I did my first and what I expected was my last introduction between my son and the oncologist, when I got the news...maybe it's still too early to cut me loose. Maybe we should monitor tumor markers and CBC for a few more years, BUT no CT scans! I expect to get an order for a CT scan in the mail any day now.
I didn't want to let on to anyone, but I was devastated. I had been looking forward to being released, well, since the day I was diagnosed. The nurse practitioner thought sure it would be today, the phlebotomists thought it would be that day, everyone in that office thought it would be that day...except the doctor. Luckily, I had my son with me so the only things I was allowed to focus on were pancakes and Legos...not at the same time though...well OK, he did mention that we needed to buy more Legos while eating his pancakes. I sent messages out of the news to those that were wanting to know. Almost all wished me congratulations that I didn't have to do CT scans anymore and that it was good news. Only one person asked me how I felt about that. And the truth is I hated it! I wanted to be done. I wanted to be free. I wanted to get on with my life. I wanted to be able to say that I was a "cancer survivor" and not a "cancer patient". I wanted to be free of the stigma. I wanted to be free of the "How are you feeling?" I wanted to walk out from under that cloud and finally be done. But now I have to let the cloud follow me around for a few more years.
So that's where life left me that day. Still a cancer patient. I had a special trip booked that instead of being a celebration of being done with cancer it's become a reminder that I am still a cancer patient. And there I found myself, sitting in a booth in a restaurant, with a cloud still over my head, a bandage from a blood draw still on my hand, and a three year old giggling while he stabbed and ate the "eyeballs" off his pancake and demanded Legos. Well, I guess life ain't all bad.
When I was first diagnosed, I was given the option after surgery of doing CT scans approximately every other day (or at least that is what the schedule they presented me with seemed to be) or do a round of chemo and have hardly any CT scans and be done with monitoring a lot sooner. Well...doctors have a tendency to lie to get you to do what they want you to do. I did the chemo, which seemed to be immediately followed by a CT scan. I am not so sure I wasn't getting a CT scan during my infusion. So anyway, that was the first clue that things weren't going according to the schedule I was initially presented with.
The bending of the schedule continued until my three year mark, which is when I distinctly remember originally being told I was going to be cut free. Then the oncologist said it would probably be good to monitor until the five year mark, but we would do less CT scans...then he immediately sent me for a CT scan.
You never know when you are no longer a "cancer patient". I mean the cancer was cut out eight days after we found it. Was that the end? Was it after my chemo infusion? Was it after my chemo brain fog left? When? I will admit, there are advantages to being referred to as a cancer patient. If you get a Diet Pepsi instead of a Pepsi at the drive thru, normally, they would just give you a Pepsi to make up for the mistake. If somehow you can work the words "cancer patient" into why you were devastated to get a Diet Pepsi, you get your Pepsi AND an ice cream. But still I was done being the cancer patient. I was hoping that the Oncologist Code said they could only lie about continuing monitoring one time, then they had to go back to lying about CT scans.
There is a stigma about being a cancer patient. Among cancer patients there is the joke that you always here "you look good" out of a person's mouth first. No one really knows what that means. Do we look better than death? Is that what they were expecting? There are many colleagues that I see a few times a year with whom I used to have normal conversations, ever since my diagnosis they start off the same way. "How are you feeling?" It's just front and foremost on some people's minds. Which in turn, makes it front and foremost on my mind. I was looking forward to being able to say, "I'm finally done with oncology so we can go back to talking about guitars, cars, or some sport that you care about and I don't."
My son and I walked into see the oncologist. The phlebotomist had already said "bye" certain that I was being cut loose, just shy of five years. I did my first and what I expected was my last introduction between my son and the oncologist, when I got the news...maybe it's still too early to cut me loose. Maybe we should monitor tumor markers and CBC for a few more years, BUT no CT scans! I expect to get an order for a CT scan in the mail any day now.
I didn't want to let on to anyone, but I was devastated. I had been looking forward to being released, well, since the day I was diagnosed. The nurse practitioner thought sure it would be today, the phlebotomists thought it would be that day, everyone in that office thought it would be that day...except the doctor. Luckily, I had my son with me so the only things I was allowed to focus on were pancakes and Legos...not at the same time though...well OK, he did mention that we needed to buy more Legos while eating his pancakes. I sent messages out of the news to those that were wanting to know. Almost all wished me congratulations that I didn't have to do CT scans anymore and that it was good news. Only one person asked me how I felt about that. And the truth is I hated it! I wanted to be done. I wanted to be free. I wanted to get on with my life. I wanted to be able to say that I was a "cancer survivor" and not a "cancer patient". I wanted to be free of the stigma. I wanted to be free of the "How are you feeling?" I wanted to walk out from under that cloud and finally be done. But now I have to let the cloud follow me around for a few more years.
So that's where life left me that day. Still a cancer patient. I had a special trip booked that instead of being a celebration of being done with cancer it's become a reminder that I am still a cancer patient. And there I found myself, sitting in a booth in a restaurant, with a cloud still over my head, a bandage from a blood draw still on my hand, and a three year old giggling while he stabbed and ate the "eyeballs" off his pancake and demanded Legos. Well, I guess life ain't all bad.
Saturday, July 19, 2014
Testicular Cancer Top 10....or I Am Not A Doctor, But You Are Still Going To Tell Me About Your Nuts...
In the breast cancer community, there are a lot of sources for finding information on how to do self exams, what treatment options are, and how to cope afterwards. And while there are certainly many sources of information and non profits for so called "men's cancers", we aren't as open about discussing them. It is ironic that the same ones that like to boast about being so well endowed that they make donkeys jealous are the same ones afraid to ask anyone how to do an exam. I am not real sure what the reason for the disparity between the sexes is. Maybe it's because breasts are right up front where you can see them and testicles are hidden, except in European bathing suits. Or maybe how the great masters would always view breasts as these perfectly formed pieces of art that they would spend days sculpting into marble, while at the same time, the artists would make a guys junk look like a wadded up piece of paper with some concrete slapped on it. At any rate, the public perception about the two are not the same.
After I went through my fight, and if you have read any of my posts you know that I have no shame in discussing what one experiences with testicular cancer, I cannot tell you how many times friends, colleagues, and random strangers have pulled me aside and asked, "How did you know?" I certainly don't mind answering that question. I can explain how I found mine and then I usually refer to a website like http://www.testicularcancersociety.org/testicular-self-exam.html to get a more clinical and better explained way to do exams. Then the feeling of dread comes over me, because I have been through this enough to know what is coming next. The person will then describe, in great wrinkly and hairy detail, why they are asking me that question. So far, they have always stopped short of actually showing me, and I would like to keep it that way. Let's face it, they are not a very attractive piece of anatomy. One of the few good things about having a nutectomy (orchiectomy, if you want to get technical), is there is one less of those ugly things that you have to look at in the shower, and bump into random stuff with...oh, and you can do your self exams in half the time.
So in the spirit of changing the stigma of testicular cancer and breaking the silence, I will post before and after pictures of my...OK, not really, but I will answer some of the questions here, that I normally get asked in a hushed voice in the corner of a crowded room, or outside around the corner out of ear shot of the smokers, or in late night phone calls with heavy breathing...OK, that person never actually says what they want, but always hangs up after I tell them to do a self exam.
1. How to do a self exam? There are several sources for how to do a self exam including the one from the Testicular Cancer Society I mentioned above. Some places even offer shower cards just like some breast cancer foundations do. There are two things to remember. First do exams consistently. You will notice something changing down there long before anyone else will. I don't care how often you go to the doctor or what odd pastimes you may have, you will still notice first if you do regular exams. And the earlier you catch it, the less it spreads to other parts of your body. Second, we all know about shrinkage, so the boys have to be warm to get a good exam. That is why it is generally suggested during a bath or shower, rather than right after taking the Polar Bear Plunge. After all, you want things loose to feel details, cancer starts small and grows, you don't want things cold and shriveled like trying to feel two acorns stuffed in a leather wallet.
2. What if I find something? It's probably nothing, but do you want to take that chance with your life? Go to a doctor to be sure. You would be amazed of the things that hang out with two nuts such as hydroceles, spermatoceles, cysts, drummers (sorry, musician joke), most of which don't hurt anything. In my case, harmless hydroceles were found, but the issue is they can mask cancer, so I was taught to do an illumination test, where basically shining a flashlight behind the boys GENERALLY causes the harmless stuff to glow and the bad things to be dark. However, let your doctor determine that for you. That is not always the case and if done wrong, you can have cancer growing for months without realizing it.
3. If it is cancer, will they take my ball(s)? Most likely yes. That is why you want to catch it early so you only lose one. But ultimately, what is the big deal? I assure you that in the almost four years since "rightie" was removed, no one has noticed. I get just as many compliments down there as I always have.
4. Will my testosterone levels drop with only one nut? Maybe, but probably only slightly. My doctor put it to me this way, if you lose one lung or donate a kidney it doesn't mean you are running on half power. Usually both don't work at full power anyway, so the remaining one just works a little harder than before. My testosterone numbers are well into the normal range.
5. Will my sperm count drop? See above. The fun part is with testosterone testing you give a blood sample, but with sperm count testing there is no needle but there are dirty magazines. Even if you drop in half, you will still more than likely have enough to get the job done or get you in trouble, however you view that situation. Just a word of caution, I don't think the girl downtown offering to check your sperm levels for $5 dollars has had any medical training whatsoever.
6. Will I be able to have kids? God I hope so, because I had one, so if you can't then someone has some explaining to do! Yes, either the natural way or with frozen guys.
7. What is the first thing I should do after being diagnosed? Ask all of your hot female friends if they want to say "goodbye". OK, obviously that is a joke and probably wouldn't even work. But I would call an organization like livestrong.org especially if you are interested in having kids. They can tell you about certain grants that will pay for collection and storage of frozen guys, but the catch on some of them is you have to apply BEFORE you go to get the collection done.
8. Can the cancer come back? Yes it could, but that is why you talk to an oncologist to see what your options are. I opted for chemo for the peace of mind of not having to worry as much about it returning. A few weeks of feeling sick was more attractive to me than a lifetime of worry.
9. Do they just slice open the bag and take out the groceries? No! They go in from around your waist so they can take all of the plumbing too, just in case it has started spreading. So you can show people your scar without being obscene...unless you want to.
10. Do you miss it or have any phantom pain like an amputee would? No, and the good thing is, say hypothetically, you have a two and a half year old that runs at you full speed with a plastic Mike the Knight sword, the chances that he will hit your tender spot have now been cut in half (although he still manages to get me on the tender side EVERY SINGLE TIME! I am throwing that damn sword in the trash!).
So there you have it. The top ten (legitimate) questions I get asked in whispers and darkened corners. If you have anymore (legitimate) questions I will answer them like I did here, based on my own experiences or direct you to a trusted source. I am in no way a doctor, and I in no way want to see pictures, diagrams, or even very accurate descriptions.
After I went through my fight, and if you have read any of my posts you know that I have no shame in discussing what one experiences with testicular cancer, I cannot tell you how many times friends, colleagues, and random strangers have pulled me aside and asked, "How did you know?" I certainly don't mind answering that question. I can explain how I found mine and then I usually refer to a website like http://www.testicularcancersociety.org/testicular-self-exam.html to get a more clinical and better explained way to do exams. Then the feeling of dread comes over me, because I have been through this enough to know what is coming next. The person will then describe, in great wrinkly and hairy detail, why they are asking me that question. So far, they have always stopped short of actually showing me, and I would like to keep it that way. Let's face it, they are not a very attractive piece of anatomy. One of the few good things about having a nutectomy (orchiectomy, if you want to get technical), is there is one less of those ugly things that you have to look at in the shower, and bump into random stuff with...oh, and you can do your self exams in half the time.
So in the spirit of changing the stigma of testicular cancer and breaking the silence, I will post before and after pictures of my...OK, not really, but I will answer some of the questions here, that I normally get asked in a hushed voice in the corner of a crowded room, or outside around the corner out of ear shot of the smokers, or in late night phone calls with heavy breathing...OK, that person never actually says what they want, but always hangs up after I tell them to do a self exam.
1. How to do a self exam? There are several sources for how to do a self exam including the one from the Testicular Cancer Society I mentioned above. Some places even offer shower cards just like some breast cancer foundations do. There are two things to remember. First do exams consistently. You will notice something changing down there long before anyone else will. I don't care how often you go to the doctor or what odd pastimes you may have, you will still notice first if you do regular exams. And the earlier you catch it, the less it spreads to other parts of your body. Second, we all know about shrinkage, so the boys have to be warm to get a good exam. That is why it is generally suggested during a bath or shower, rather than right after taking the Polar Bear Plunge. After all, you want things loose to feel details, cancer starts small and grows, you don't want things cold and shriveled like trying to feel two acorns stuffed in a leather wallet.
2. What if I find something? It's probably nothing, but do you want to take that chance with your life? Go to a doctor to be sure. You would be amazed of the things that hang out with two nuts such as hydroceles, spermatoceles, cysts, drummers (sorry, musician joke), most of which don't hurt anything. In my case, harmless hydroceles were found, but the issue is they can mask cancer, so I was taught to do an illumination test, where basically shining a flashlight behind the boys GENERALLY causes the harmless stuff to glow and the bad things to be dark. However, let your doctor determine that for you. That is not always the case and if done wrong, you can have cancer growing for months without realizing it.
3. If it is cancer, will they take my ball(s)? Most likely yes. That is why you want to catch it early so you only lose one. But ultimately, what is the big deal? I assure you that in the almost four years since "rightie" was removed, no one has noticed. I get just as many compliments down there as I always have.
4. Will my testosterone levels drop with only one nut? Maybe, but probably only slightly. My doctor put it to me this way, if you lose one lung or donate a kidney it doesn't mean you are running on half power. Usually both don't work at full power anyway, so the remaining one just works a little harder than before. My testosterone numbers are well into the normal range.
5. Will my sperm count drop? See above. The fun part is with testosterone testing you give a blood sample, but with sperm count testing there is no needle but there are dirty magazines. Even if you drop in half, you will still more than likely have enough to get the job done or get you in trouble, however you view that situation. Just a word of caution, I don't think the girl downtown offering to check your sperm levels for $5 dollars has had any medical training whatsoever.
6. Will I be able to have kids? God I hope so, because I had one, so if you can't then someone has some explaining to do! Yes, either the natural way or with frozen guys.
7. What is the first thing I should do after being diagnosed? Ask all of your hot female friends if they want to say "goodbye". OK, obviously that is a joke and probably wouldn't even work. But I would call an organization like livestrong.org especially if you are interested in having kids. They can tell you about certain grants that will pay for collection and storage of frozen guys, but the catch on some of them is you have to apply BEFORE you go to get the collection done.
8. Can the cancer come back? Yes it could, but that is why you talk to an oncologist to see what your options are. I opted for chemo for the peace of mind of not having to worry as much about it returning. A few weeks of feeling sick was more attractive to me than a lifetime of worry.
9. Do they just slice open the bag and take out the groceries? No! They go in from around your waist so they can take all of the plumbing too, just in case it has started spreading. So you can show people your scar without being obscene...unless you want to.
10. Do you miss it or have any phantom pain like an amputee would? No, and the good thing is, say hypothetically, you have a two and a half year old that runs at you full speed with a plastic Mike the Knight sword, the chances that he will hit your tender spot have now been cut in half (although he still manages to get me on the tender side EVERY SINGLE TIME! I am throwing that damn sword in the trash!).
So there you have it. The top ten (legitimate) questions I get asked in whispers and darkened corners. If you have anymore (legitimate) questions I will answer them like I did here, based on my own experiences or direct you to a trusted source. I am in no way a doctor, and I in no way want to see pictures, diagrams, or even very accurate descriptions.
Saturday, July 5, 2014
Old Feelings Die Hard
Four years ago this week, I first noticed my lump. My wife had went on vacation with her mother and I stayed home alone to take care of work projects and watch the dogs. The past three years, I never really paid any attention to this date. After all, it's the date I just noticed something. It wasn't the date I was diagnosed. It wasn't the date I had my surgery or went through chemo or anything. But that is the weird thing about cancer, it seems you are never really completely free.
This year we had planned to take my two year old to my parents to watch fireworks for the 4th of July. From their house, they can see most of the fireworks. And we thought if we take him there, and he doesn't like the loud noises, or the bright lights, or he just starts being...well, a two year old, we could just take him in the house and not have to deal with traffic or crowds or that one guy that has to describe every firework loudly. After we had made these plans, my job made other plans, and my wife offered to take my son without me. It was a plan that was seemingly perfect, my son could experience the fireworks for the first time and I could keep skittish dogs company in the country.
That is when it hit me last night. I have been passing my scans without any problem, and my scanxiety has dropped to almost nothing. I only have to go to the oncologist twice a year now Even my dermatologist told me that she could tell I was really making a good effort to avoid skin cancer. So I haven't been thinking about cancer much at all. But last night was different. I was back to that place four years ago, just me and the dogs. The weird thing is, I didn't feel a lump, but I did have that feeling, a feeling I can't explain.
Most of us when we are diagnosed, aside from the shock of the "C" word, you get this "icky" feeling that something is growing inside of you that wants to kill you. The surgery can't come quick enough, you just want that stuff out today. That is the feeling I had last night. The feeling that I was all alone again. The feeling that something icky was going on. What made last night even freakier, was without thinking, I picked up that PRS guitar I bought four years ago today to play with while they were gone. It's not one I normally play, but it's what I grabbed last night. The only one that was light enough for me to play after my surgery. The one that got me through cancer. Just as my mind flashbacked to the bad time four years ago, I also subconsciously reached for the one thing that helped me get through it too.
As I approach what I consider my fourth cancerversary, I have been thinking about when I am done. Is it five years? Is it ten? Is it when you quit going to the oncologist...I hope it's not that one, because I think he has been saying "just a few more years" since my second visit. As far as my health is concerned, I think I am done. I have been getting clean scans. I have finally been dropping the weight I gained while I was sick. And for the most part, I feel better than before any of this happened. But I guess it's harder to gauge the feeling that we are done mentally being affected by cancer. Because last night, I sat alone and scared and realized I wasn't as done as I thought I was. Or maybe I am, because I grabbed that PRS, just like I did after my surgery, and played until I didn't have cancer anymore.
This year we had planned to take my two year old to my parents to watch fireworks for the 4th of July. From their house, they can see most of the fireworks. And we thought if we take him there, and he doesn't like the loud noises, or the bright lights, or he just starts being...well, a two year old, we could just take him in the house and not have to deal with traffic or crowds or that one guy that has to describe every firework loudly. After we had made these plans, my job made other plans, and my wife offered to take my son without me. It was a plan that was seemingly perfect, my son could experience the fireworks for the first time and I could keep skittish dogs company in the country.
That is when it hit me last night. I have been passing my scans without any problem, and my scanxiety has dropped to almost nothing. I only have to go to the oncologist twice a year now Even my dermatologist told me that she could tell I was really making a good effort to avoid skin cancer. So I haven't been thinking about cancer much at all. But last night was different. I was back to that place four years ago, just me and the dogs. The weird thing is, I didn't feel a lump, but I did have that feeling, a feeling I can't explain.
Most of us when we are diagnosed, aside from the shock of the "C" word, you get this "icky" feeling that something is growing inside of you that wants to kill you. The surgery can't come quick enough, you just want that stuff out today. That is the feeling I had last night. The feeling that I was all alone again. The feeling that something icky was going on. What made last night even freakier, was without thinking, I picked up that PRS guitar I bought four years ago today to play with while they were gone. It's not one I normally play, but it's what I grabbed last night. The only one that was light enough for me to play after my surgery. The one that got me through cancer. Just as my mind flashbacked to the bad time four years ago, I also subconsciously reached for the one thing that helped me get through it too.
As I approach what I consider my fourth cancerversary, I have been thinking about when I am done. Is it five years? Is it ten? Is it when you quit going to the oncologist...I hope it's not that one, because I think he has been saying "just a few more years" since my second visit. As far as my health is concerned, I think I am done. I have been getting clean scans. I have finally been dropping the weight I gained while I was sick. And for the most part, I feel better than before any of this happened. But I guess it's harder to gauge the feeling that we are done mentally being affected by cancer. Because last night, I sat alone and scared and realized I wasn't as done as I thought I was. Or maybe I am, because I grabbed that PRS, just like I did after my surgery, and played until I didn't have cancer anymore.
Saturday, October 26, 2013
Cancer Flashbacks With Paul Reed Smith
I am well aware that it has been a while since I last posted on here. I do have a reason. Trying to type with a toddler in the house means most of your writing looks like this "aklsjoun saiolkjdfslak klafjl;a". And even if he were not "helping" me on the keyboard, it is hard to concentrate on writing when you have a two foot tall individual that moves just shy of the speed of light, that you are yelling things at like "get your fingers out of the dogs' eyes", "no, the remote control doesn't belong in the toilet", "we can't blow bubbles outside right now, it's 14' outside, and dark", "get your fingers out of the dogs' eyes", "where did you find that, get it out of your mouth", "get your fingers out of the dogs' eyes", "no, the table lamp is not a toy", and "get your fingers out of the dogs' eyes". (In case you were wondering, learning the parts of the face was a very challenging time for our dogs' vision. Maybe we will have to find them a "seeing eye person".)
So, because of the delay, I am writing about an incident that happened in June. I think we have all been in a situation where a sound, or picture, or smell has brought you back to something in your past. For instance, every time I smell VapoRub, I think back to that time as a little child that my great grandmother rubbed it into an open wound. It still brings tears to my eyes. Well, for the most part I feel I am over this cancer stuff. Sure, I still have a few more years of CTscans, X-rays, blood tests, and all of the other monitoring. I am not exactly sure how many years, because asking an oncologist how much longer you need to see him, is similar to asking your parents on a road trip "are we there yet?". I think the answer has always been "4 or 5 more years" (for the oncologist visits, not the road trip...it just seemed like it took 4 or 5 years sometimes). Other than the endless doctors' appointments, I really don't have much to do with cancer. Oh there is still the solemn tone from friends you don't see very often asking "How are you doing?" But for the most part, I am living my life.
I love playing guitar. I play like I play golf, I don't play particularly well, but I don't take it too seriously and I enjoy doing it. When I had my surgery, I was restricted in what I could lift. Luckily, just before I was diagnosed, I had found some cheap used Paul Reed Smith guitars. They were the lightest guitars I owned, and were pretty much the only ones I could lift and play for a long time. They were the one thing that was able to get my mind off how bad things were for an hour or so at a time. When I finished my chemo, my family all pitched in and bought me a nice Paul Reed Smith for Christmas. The guitar means a lot to me for so many reasons. First I just like the guitar! But it symbolized closing the door on cancer. It meant a lot for my family to pitch in and get me something like that. And it was something I spent a lot of time with during my "chemo brain" months. So, a coincidental introduction to PRS guitars, ending up having a pretty significant impact on that period of my life.
Which brings me to what happened in June. Every year, Sweetwater Music has what basically amounts to "musician porn" at their campus in Fort Wayne, Indiana. Literally hundreds of manufacturers are there showing off all their new toys, letting you play with them, and they bring in dozens of endorsed artists (some more famous than others) to trick you into thinking that if you just had that equipment, you could make all those amazing sounds too! Well, Paul Reed Smith was on hand. Not just the company, Paul Reed Smith the actual person. In my past, I worked for a record company, regularly hanging out backstage and on tour buses of multi-platinum and even diamond selling artists (diamond is ten million copies). I was never nervous or star struck hanging out with rock stars, but being the geek I am, I was excited to see a guy that designs guitars.
One good thing is, I was right at home with my fellow geeks, because there was a full auditorium of us waiting to see him (although, I was one of the few that showed up an hour early to stand in line, and made it to the front row). I watched his presentation in awe when he talked about all the technical things that make his company's guitars sound so good. I had heard he was good about doing "meet and greets" with his fans, and throughout waiting in line, and his presentation, and...waiting in line again to meet him, I ran through my head exactly what I was going to say. I was going to tell him, how his products got me through some dark times. Thank him profusely. And maybe talk to him about the technical nuances of a quality guitar (not that I know what I am talking about, but I can fake it).
The problem with be one of the first ones in the auditorium for the presentation, is that means you are going to be one of the last ones out to stand in line for the meet and greet. The whole time in line, I ran over my little monologue in my head. Over and over again, as the line grew smaller and I moved closer and closer to this guy who really has no idea that his guitar helped me with my cancer fight (although his company does regular donate to cancer charities). Then the big moment, I am standing before THE Paul Reed Smith...and I feel like I am at the oncologist's office for the first time, all the emotion came flooding back from that day. I felt the fear, felt overwhelmed, I felt like I was going to burst into tears...but I WAS NOT going to do that...no matter what!
So, I stood before Paul Reed Smith, handed him part of my guitar to sign. And was afraid if I said anything I would have an emotional outburst. So, in an effort to hold back this flood of emotions, I stood there looking like I was probably about to punch him. He asked me if I would like the autograph personalized and my big speech that I had practiced over and over again, was now reduced to one word, "Tom". Yes, all that I had planned on saying, all that I wanted to thank him for was boiled down to me barely uttering my own name through clenched teeth. He politely signed my piece for me and I briskly walked out of there, trying not to break into an all out sprint as I headed to my car, hoping if I went fast enough I could outrun this emotional avalanche. But I was also hoping if I couldn't keep it together, I would be far enough away that no one would see me.
Now, let me just say one thing in my defense. The surgery I had to help prevent a different kind of cancer, has caused me to be a hypoglycemic. And sometimes when people have low blood sugar, they tend to get more intense emotions. And, because I am a big geek, I got so busy looking at musician porn, and standing in line an hour early, and sitting through a presentation, and standing in line again, that I went about 14 hours without eating (not a smart thing for a hypoglycemic to do). So I will blame part of this incident on that, so as not to appear to be such a wuss.
So, I didn't get to thank Paul Reed Smith. And to be honest, I don't know what he would have thought about it if I did. It's not like he found the lump, or performed the surgery, or administered the chemo, but he was still important to my recovery, even if that isn't why he got in the guitar business. But this incident says a lot about us cancer survivors. You never know what is going to help us get through a hard time. It could be a book, a phone call, visits from a friend, or a cheap used guitar. And it is hard to feel "done" with cancer when you are still going to doctors' appointments every few months. They tell you it's over with, but in the very next breath, tell you to come back in November. And just like any other major event in your life, you never know what trigger will bring you back a memory or a feeling, that you may or may not want to experience again. At least, I got to meet him. I got something signed to me personally. And I got something to eat so something like that didn't happen again.
Friday, March 29, 2013
Back To Normal Levels After Testicular Cancer
One of the things many people worry about as they undergo treatment for testicular cancer is how will this affect them afterwards? Well, I finally received my answer.
One thing I was worried about was testosterone levels. One of my nurse friends said it would be good to have lower testosterone levels because it would decrease my future cancer risks. However, commercials are constantly pointing out how my becoming a fat, lazy slob as I get older has nothing to do with me being a fat lazy slob, but low testosterone (that they would be able to fix). Feeling like I was in a "damned if I do..." position I asked my urologist about it. I was told that high testosterone doesn't increase the chance of prostate cancer, but it makes it grow faster if you do get it. And low testosterone may make you more inclined to be a fat, lazy slob, but it doesn't really cause any health problems on its own (being a fat, lazy slob does though). Worried that my levels would be half, he told me how most duplicated organs aren't working 100% all the time anyway. That is why people with one lung or kidney can still function, because the remaining one turns it up a little. After going through a bunch more explanation in doctor talk which I kinda blanked out on, we decided to test my testosterone and the results came back that I was at normal levels. So, I have to blame being a fat, lazy slob on something else...like the lack of global warming in my area making it too cold to go outside.
Recently, my wife went to her "female doctor" and somehow came home with an appointment for me! I get enough doctors' appointments scheduled on my own without having to do someone else's homework too. Anyway, I was told to go back to the Jerkatorium (official doctor lingo for a sperm bank) and see what my levels were, just in case we ever want to have another kid, which I am told we aren't having, but do this just in case we change our minds one day, which isn't up to me anyway, and it is always a woman's prerogative to change her mind so I should just keep my mouth shut...or something like that. I will spare you the details of the inner workings of the Jerkatorium, because I have previously written about that. But what I did find disturbing this time was the addition to the "library" of DVD "aids". While carefully pushing them around trying my best not to actually touch anything in there, (because after all I know what people do in that room because I was about to do it) I noticed most of the DVD cases were empty. I wish I could immediately decontaminate everything I am wearing as soon as I leave that room, so it certainly would never cross my mind that I should grab a integral part of the functioning of this room and bring it home with me. Ewww! Anyway, we will just fast forward to the results. That came back saying I was normal too! Not normal for a testicular cancer survivor, but normal for a normal person...assuming normal people go into a room, look at dirty magazines, leave their business on the counter, and occasionally steal DVDs.
So the moral of the story is, don't steal from the Jerkatorium because you DO know where that stuff has been....NOOO, that's not the moral of the story! The moral is, not only is testicular cancer a very survivable cancer, but you can regain your normal life back. You won't be half a man. You can still have normal levels of testosterone and swimmers, and even if your tests results don't come back normal, you can easily fix the testosterone levels, and if you froze your swimmers like I did before surgery, you can still have children or use it for disgusting pranks to put on YouTube and none of your friends will ever eat or drink anything at your house again.
And there are even some positives of being part of the One Nut Club! I will close with this Top 10 List:
Top 10 Benefits of Only Having One Testicle
10 You only have to manscape half as much (if you are a manscaper).
9 When you test your levels, you health insurance company is actually paying for you to look at porn!
8 You have more room in your underwear.
7 Not as much to get sweaty down there.
6 People are afraid to use the phrase "Don't go off half cocked" around you.
5 When it is really cold out you can say "I am freezing my ball off!"
4 When your toddler is flailing around like a twerking jellyfish, your chances of getting hit in the nuts just dropped by 50% (anecdotal evidence).
3 Your self exams are done in half the time. Don't forget to do them!
2 You can make the comment "I would give my right (or left) nut for ______" then you could offer to go get it from the surgeon.
1 When you wear Speedos you only have to worry about stuff slipping out on one side.
One thing I was worried about was testosterone levels. One of my nurse friends said it would be good to have lower testosterone levels because it would decrease my future cancer risks. However, commercials are constantly pointing out how my becoming a fat, lazy slob as I get older has nothing to do with me being a fat lazy slob, but low testosterone (that they would be able to fix). Feeling like I was in a "damned if I do..." position I asked my urologist about it. I was told that high testosterone doesn't increase the chance of prostate cancer, but it makes it grow faster if you do get it. And low testosterone may make you more inclined to be a fat, lazy slob, but it doesn't really cause any health problems on its own (being a fat, lazy slob does though). Worried that my levels would be half, he told me how most duplicated organs aren't working 100% all the time anyway. That is why people with one lung or kidney can still function, because the remaining one turns it up a little. After going through a bunch more explanation in doctor talk which I kinda blanked out on, we decided to test my testosterone and the results came back that I was at normal levels. So, I have to blame being a fat, lazy slob on something else...like the lack of global warming in my area making it too cold to go outside.
Recently, my wife went to her "female doctor" and somehow came home with an appointment for me! I get enough doctors' appointments scheduled on my own without having to do someone else's homework too. Anyway, I was told to go back to the Jerkatorium (official doctor lingo for a sperm bank) and see what my levels were, just in case we ever want to have another kid, which I am told we aren't having, but do this just in case we change our minds one day, which isn't up to me anyway, and it is always a woman's prerogative to change her mind so I should just keep my mouth shut...or something like that. I will spare you the details of the inner workings of the Jerkatorium, because I have previously written about that. But what I did find disturbing this time was the addition to the "library" of DVD "aids". While carefully pushing them around trying my best not to actually touch anything in there, (because after all I know what people do in that room because I was about to do it) I noticed most of the DVD cases were empty. I wish I could immediately decontaminate everything I am wearing as soon as I leave that room, so it certainly would never cross my mind that I should grab a integral part of the functioning of this room and bring it home with me. Ewww! Anyway, we will just fast forward to the results. That came back saying I was normal too! Not normal for a testicular cancer survivor, but normal for a normal person...assuming normal people go into a room, look at dirty magazines, leave their business on the counter, and occasionally steal DVDs.
So the moral of the story is, don't steal from the Jerkatorium because you DO know where that stuff has been....NOOO, that's not the moral of the story! The moral is, not only is testicular cancer a very survivable cancer, but you can regain your normal life back. You won't be half a man. You can still have normal levels of testosterone and swimmers, and even if your tests results don't come back normal, you can easily fix the testosterone levels, and if you froze your swimmers like I did before surgery, you can still have children or use it for disgusting pranks to put on YouTube and none of your friends will ever eat or drink anything at your house again.
And there are even some positives of being part of the One Nut Club! I will close with this Top 10 List:
Top 10 Benefits of Only Having One Testicle
10 You only have to manscape half as much (if you are a manscaper).
9 When you test your levels, you health insurance company is actually paying for you to look at porn!
8 You have more room in your underwear.
7 Not as much to get sweaty down there.
6 People are afraid to use the phrase "Don't go off half cocked" around you.
5 When it is really cold out you can say "I am freezing my ball off!"
4 When your toddler is flailing around like a twerking jellyfish, your chances of getting hit in the nuts just dropped by 50% (anecdotal evidence).
3 Your self exams are done in half the time. Don't forget to do them!
2 You can make the comment "I would give my right (or left) nut for ______" then you could offer to go get it from the surgeon.
1 When you wear Speedos you only have to worry about stuff slipping out on one side.
Wednesday, March 27, 2013
When Are You Done With Cancer?
As I write this I am about two and a half years out of my cancer diagnosis and treatment. Aside from a little skin cancer scare (which turned out was nothing) one could say I have been done with cancer. However, that is not exactly how it works in the cancer game.
There are so many questions as to when you are officially no longer a cancer patient. Was it the surgery? The chemo? When you quit going to an oncologist? Or when you finally pay off all your medical bills? (In which case I will never be done.) In many ways I no longer feel like a cancer patient, but at the same time, at the beginning of every month I look at my calendar and see what doctors appointments I have this round. It is hard to feel "well" or "cured" when you are sitting in a waiting room all of the time. I mean who needs a People magazine subscription when you can read it for free every month while you wait for the nurse to call your name? The good news is the frequency of the appointments slowly grows further and further apart. I think I am down to CT scans once a year now (so I only have to drink a half gallon of nasty tasting water a year).
The funny thing is, because of the doctors' good reports you feel like your not well. Because of the type of work I do, I tend to run into people that I haven't seen for months or even a year and they always ask how I am doing With the frequency of doctors appointments my answer is usually,"Well, I was just at the doctor and they said I was fine." That is the Catch 22 of being in monitoring, you have to see an "ist" each month (oncologist, urologist, gastroenterologist, etc.) but at least they say you are doing good each time. You don't feel like you can say "Oh, the cancer thing is over." because you are still seeing an oncologist, but at the same time you don't feel like a real cancer patient because you are not having to go through any treatment.
On one hand, it is nice to have the peace of mind every month that you are safe for four more weeks. On the other hand things get so routine, you wonder why you are paying more and more for something you could probably do yourself at this point. Heck, I am in and out of my urologist's office so fast, I could probably just drive by his office slowly with my scrotum hanging out the car window and toss out my co-pay.
I think the biggest part of not feeling "over" cancer is the mental aspect of it. Every bump, twitch, even feeling tired when you don't think you should makes you wonder if just maybe it's something bigger. And not even your thoughts are safe. My one-year-old had been going through a phase where he wants me to hug me, or have me hold him, or just lean against me. Most people would just understand it is the clingy phase that all toddlers go through, but my mind wondered if he wasn't sensing something, that maybe I wouldn't be around much longer and he needed to get his quality time in while I was still alive.
Even happy dreams aren't safe. I know two people that have flatlined on operating tables and come back to life. They both tell of people that have died greeting them at the end of the tunnel and telling them that it's not their time yet to go back to earth. I have had some friends die and some family members die, but only one person in my life has died that I saw everyday, and would spend an hour just talking to everyday about whatever. Well, that person was in my dream the other night. He welcomed me into Heaven, showed me around, and we picked up on conversations we started before he died. I woke up feeling so good knowing that if I died, this person would be the one that brought me through the tunnel and took me to see my other friends and family that have already passed. But that good feeling quickly turned to dread, as I wondered why I was dreaming about dying and does my body know something that it hasn't shared with my brain yet. Maybe part of my brain does know and it is just not sharing the information with the rest of my brain the same way it does when I ask it where I put the car keys.
The biggest joy I have in life is watching my son play, which we weren't even sure we were going to be able to have when all this started. Even while sitting there just watching him run around like a drunk kamikaze gymnast, I worry about recurrence and not being around to watch him grow up. Or not being around and maybe his only memory of me will be me yelling at him to quit splashing in the dogs' water dish (which to be fair is something I do approximately 1500 times everyday).
So am I done with cancer? The doctors say "yes" but then tell me to schedule an appointment to come back and make sure it's still "yes". Physically, outside of underwear not fitting quite the way it used to, I feel like I am done with cancer. Mentally, the chemo fog has cleared up, but there is always that cancer cloud hanging over me, just like a summertime meteorologist's permanent "30% chance of storms". The ironic thing is the more my son shines the more I worried I get about that cancer cloud. But until then I will enjoy every second I get to spend with my son, even the hours on end I spend pulling him out of the dog dish, and hopefully live long enough to teach him how to check for testicular cancer on himself one day.
There are so many questions as to when you are officially no longer a cancer patient. Was it the surgery? The chemo? When you quit going to an oncologist? Or when you finally pay off all your medical bills? (In which case I will never be done.) In many ways I no longer feel like a cancer patient, but at the same time, at the beginning of every month I look at my calendar and see what doctors appointments I have this round. It is hard to feel "well" or "cured" when you are sitting in a waiting room all of the time. I mean who needs a People magazine subscription when you can read it for free every month while you wait for the nurse to call your name? The good news is the frequency of the appointments slowly grows further and further apart. I think I am down to CT scans once a year now (so I only have to drink a half gallon of nasty tasting water a year).
The funny thing is, because of the doctors' good reports you feel like your not well. Because of the type of work I do, I tend to run into people that I haven't seen for months or even a year and they always ask how I am doing With the frequency of doctors appointments my answer is usually,"Well, I was just at the doctor and they said I was fine." That is the Catch 22 of being in monitoring, you have to see an "ist" each month (oncologist, urologist, gastroenterologist, etc.) but at least they say you are doing good each time. You don't feel like you can say "Oh, the cancer thing is over." because you are still seeing an oncologist, but at the same time you don't feel like a real cancer patient because you are not having to go through any treatment.
On one hand, it is nice to have the peace of mind every month that you are safe for four more weeks. On the other hand things get so routine, you wonder why you are paying more and more for something you could probably do yourself at this point. Heck, I am in and out of my urologist's office so fast, I could probably just drive by his office slowly with my scrotum hanging out the car window and toss out my co-pay.
I think the biggest part of not feeling "over" cancer is the mental aspect of it. Every bump, twitch, even feeling tired when you don't think you should makes you wonder if just maybe it's something bigger. And not even your thoughts are safe. My one-year-old had been going through a phase where he wants me to hug me, or have me hold him, or just lean against me. Most people would just understand it is the clingy phase that all toddlers go through, but my mind wondered if he wasn't sensing something, that maybe I wouldn't be around much longer and he needed to get his quality time in while I was still alive.
Even happy dreams aren't safe. I know two people that have flatlined on operating tables and come back to life. They both tell of people that have died greeting them at the end of the tunnel and telling them that it's not their time yet to go back to earth. I have had some friends die and some family members die, but only one person in my life has died that I saw everyday, and would spend an hour just talking to everyday about whatever. Well, that person was in my dream the other night. He welcomed me into Heaven, showed me around, and we picked up on conversations we started before he died. I woke up feeling so good knowing that if I died, this person would be the one that brought me through the tunnel and took me to see my other friends and family that have already passed. But that good feeling quickly turned to dread, as I wondered why I was dreaming about dying and does my body know something that it hasn't shared with my brain yet. Maybe part of my brain does know and it is just not sharing the information with the rest of my brain the same way it does when I ask it where I put the car keys.
The biggest joy I have in life is watching my son play, which we weren't even sure we were going to be able to have when all this started. Even while sitting there just watching him run around like a drunk kamikaze gymnast, I worry about recurrence and not being around to watch him grow up. Or not being around and maybe his only memory of me will be me yelling at him to quit splashing in the dogs' water dish (which to be fair is something I do approximately 1500 times everyday).
So am I done with cancer? The doctors say "yes" but then tell me to schedule an appointment to come back and make sure it's still "yes". Physically, outside of underwear not fitting quite the way it used to, I feel like I am done with cancer. Mentally, the chemo fog has cleared up, but there is always that cancer cloud hanging over me, just like a summertime meteorologist's permanent "30% chance of storms". The ironic thing is the more my son shines the more I worried I get about that cancer cloud. But until then I will enjoy every second I get to spend with my son, even the hours on end I spend pulling him out of the dog dish, and hopefully live long enough to teach him how to check for testicular cancer on himself one day.
Tuesday, June 19, 2012
Cancer Scare Number 2
When I was a teenager, we lived six houses down from the community pool. Every summer day was either spent poolside, or windowside waiting to see if the storm would dissipate so we could go to the pool. A little bit later, I became a lifeguard at that same pool. After doing that for a few years, I spent a summer working outside at a State Park. And while all this was going on, I would take the occasional day job at a local farmer, or my friend's farm helping to bale hay. What does any of this have to do with anything? Well, I don't remember using sunscreen at all. I am sure I did at least a few times, but I certainly don't remember it. At least I wasn't as bad as some of the girls I lifeguarded with, that used Crisco for a week. Now you might think I am saying that just to be funny, but I am dead serious, they broke out the Crisco shortening and slathered it on, and I am sure you will be surprised by this, the next week they had sun poisoning and had to stay indoors for several days (meaning those of us who did NOT use Crisco had to pull double duty on the lifeguard chairs/sun). As I grew older, bad habits with sunscreen certainly didn't improve.
That leads to today's topic. It takes me about four hours to mow our lawn. The first mow of the season, the sun didn't seem too bright or hot so I didn't think much about sunscreen...until I started burning, but by then I only had an hour of mowing left and it seemed silly to stop in the middle just to put some on, after all the damage was already done, right? Well, over the next few days of painful and cold showers, I notice a raised bump on my arm that didn't go away. After having my experience with testicular cancer I determined the best course of action would be to ignore it and see if it went away. After a month I started getting worried. I looked up information on some medical websites that told me I had approximately 17 minutes to live before that bump completely took over my body. Don't get me wrong there is some good health information on the internet, but a lot more horrible health information. A search of any malady will lead you to results from certain and impending death, to "just ignore it and lay your lifecrystal upon whatever hurts". Somewhere in the middle lies the actual good information, and you have to figure out what that is, and if you knew what it was you wouldn't be doing a blind internet search for it to begin with. I won't say where my advice falls on this spectrum, but it is probably near the ends.
After consistent (but correct) nagging from my wife, I decided to call my oncologist to see what dermatologist he recommended. Have you ever heard of those restaurants that you have to wait three or four years to get a table? Dermatologists' waiting lists are slightly longer. Luckily, because of a cancellation (or death, I didn't want to ask) I was able to get an appointment just one more month away. The whole time I am waiting, I am torn because although I want the bump to go away, I don't want to go to the doctor after the month wait and say, "Well, it was here and it looked really ugly, but then it got small and disappeared yesterday." But I didn't have to worry, the bump stuck around.
Finally, the day arrived for the dermatologist visit...literally one day after we got back from a Florida beach vacation. Walking into a dermatologist's office really tan feels much like walking into an Alcoholics Anonymous meeting with a quarter of a bottle of Rum Jumbie (I imagine...). When I finally get taken back to the doctor, they give you a paper blanket (which is slightly smaller than a Kleenex) and tell you to disrobe. See, just because a patch of skin hasn't been exposed to the sun, that doesn't mean you won't still get skin cancer there. So the doctor checks everywhere...everywhere! In the movies, when you see the doctor walk in the room and the patient is naked, there is usually some boom chicka wow wow music playing. The real situation has no music, and is a whole different experience (which is good because I didn't want a pizza boy walking in the scene too). Basically, you stand there while the doctor looks over every millimeter of your body occasionally poking or tugging at things while wrinkling her nose. The whole time you have to fight the urge to make excuses on why you have abused your skin and been too tan in some areas, or too pasty in others, or too flabby in others, and remark on how cold it is in the room. After feeling like you are a rental car being inspected to be turned back in, the doctor starts talking again and gets out a marker. She points out various anomalies and explains what they are, what causes them, whether you need to keep an eye one them. It was very informative. For instance, now I know that there are such things as "penis freckles" that guys can get as they get older...I have probably said too much. Moving on! The next step is the marker. Feeling much like the guy who passed out way too early at the party, the doctor starts drawing circles and "x"s and who know what else. After getting dressed, she said, "This one I am going to freeze off and these two I am going to take." Happy to have my clothes back on (and not to have any penis freckles marked), I didn't really stop to think what "going to take" meant.
The freezing was nothing. A bit of itchy, burning type feeling, but no biggie. Then, I found out what "going to take" meant for the other two. First, they stick a needle next to the thing they are taking to numb it up. Then they start shaving that thing down until it is either gone, or they have a big enough sample to test (which as near as I can tell requires you to shave down to the bone). For the one on my arm, it was a breeze. Slight stick, a little pressure, and a band-aid. The other was right next to my eye. Now the local anesthesia they gave me, not only made things go numb, but it caused my eye to blink uncontrollably. We are talking like the little light that lets you know your hard drive is running type of uncontrollably. Then they take the razor thing NEXT TO YOUR EYE, and after giving the medication to cause spastic twitching they say, "Now hold still..." I have had much more painful procedures, and much longer procedures, but this was definitely the most annoying in my life. I am told I am free to go, with one eye open and the other neither remaining open or closed, giving me all the depth perception of walking with a strobe light. Thinking "Safety First" I thought I should probably wait it out in the lobby before I try driving with "strobe eye". "How long does this last?", I ask. "It will wear off in about two or three hours.", was the reply, like it was no big deal to wink at everyone within a five mile radius for the next 180 minutes. I decided to just drive carefully home, and whatever I do, don't get out of the car. Hungry, I just pulled into a White Castle drive-thru, because I figured at White Castle a guy winking furiously would still not be the most memorable character they will see that day.
Luckily, I had an oncologist appointment the next day. I say "luckily" because two weeks earlier I had a CAT scan, so when I received a clean bill of health from the oncologist I knew regardless of my skin results, it hadn't reached my lymph nodes and my blood tests were fine. At first, the skin samples didn't bother me. But the longer it took for the results to come back, the more scanxiety set in. In the two weeks of waiting, I used sunscreen religiously. I used it almost as much as I checked the mailbox, email, and phone messages waiting for the results to come back. Finally, the letter came in the mail that said "benign (non-malignant)", which made me laugh because if you don't know what the word "benign" means, will you know what "non-malignant" means? Maybe they should say "benign (you don't have cancer)" because that is all people want to understand about that.
So, a good scare to wake me up. But since part of what I do for a living requires me to know about "rems" and "rads" and all that good stuff, I know that radiation (yes the sun is emitting radiation) builds up over a lifetime, I know that my careless youth means I need to be even more careful now. If there is something good that came of out this scare, it's that I am taking my lessons learned and applying them to my six month old before the damage starts. So what if his skin is so pale it's almost clear, one day he will thank me for it.
Tuesday, March 20, 2012
(Creating) Life after Testicular Cancer.
I know I was supposed to write this last week, but by then end of today's post you will understand why I am not always able to post when I want. As I have mentioned in the past, I was laid off from work exactly two weeks when I was diagnosed with testicular cancer. Two life changing events that came back to back. What only my very closest friends know what there was actually a third event that happened right after that.
We had been wanting to start a family for a while, and were actively trying for around a year. A few days before I started chemo we found out that we were pregnant. It seemed like the typical feel good story, boy loses job, boy loses ball, but before he lost that nut boy and girl get pregnant. There was a whirlwind of emotions, it was something we desperately wanted, but the timing couldn't be worse. Chemo works by being a very nasty drug that is easily absorbed by anything that grows quickly in the human body, like cancer cells, hair, taste buds, and unfortunately babies. Because of this the first week I had to take tons of precautions around my wife making sure that she did not come into any contact with anything that may have the chemo in it. Even using the bathroom involved closing the lid, covering the lid with a heavy towel, and flushing the toilet twice. I never realized how long it takes a toilet to flush until I had to stand, weakened from chemo, waiting for it to finish flushing twice so I could remove the towel and go back to my normal routine.
After we went through all of this trouble, we lost the baby. It was very early in the pregnancy, and to say we were stressed during this time would be an understatement. What we found out after this was the staggering percentage of first time pregnancies that end in miscarriage, however that didn't make us feel any better. It was a third blow to us in less than two months. It was the ray of hope we had been focused on through chemo. Of course many things ran through my mind, like was it my fault for missing a chemo precaution and maybe I should have postponed my treatment.
The next few weeks were a mass of confusing information. Some people say to try again right away, others say wait. Some doctors say don't try so soon after chemo, others say it is fine the swimmers either die from the chemo or are not affected. My urologist said to just give up for at least six months, but my oncologist urged us to see a fertility specialist because we "needed something good in our lives". And he was right.
The first thing a fertility specialist tries to determine is which partner is causing the trouble. This makes tons of sense, I mean treat the person with the problem(s), right? So, my poor wife goes through a series of tests that look like the set of a alien abduction movie. I still have nightmares about some other the stainless steel contraptions I saw. I also had to go through a series of grueling tests that involved me going into a room, and being provided with dirty magazines, dirty movies, and a cup. It was horrible for me, mainly because I had already read all of the magazines when we "banked" some samples before my surgery.
So after my wife goes through her series of probings and shots, and I watch a few movies, we find out that...surprise surprise the problem looks like it is with the guy with the testicular cancer and chemo. Who would've guessed? The doc was very supportive and said with very little intervention, we could use my frozen stuff and probably be successful. No nasty chemicals, no danger of having "Plus 8" after our names or being chased by reality TV producers, for the most part things are pretty normal...except one.
This technique required me to give my wife a shot in her gluteus maximus the night before the procedure. Our doctor was very supportive and involved so they even drew and "X" on the targeted butt cheek to show the exact spot that the injection needs to be placed. Well, the first round didn't work, so when went for the second try the next month, I asked the nurse if instead of an "X" if she could draw a happy face so I could "jab it between the eyes with the needle". See, these are the kinds of suggestions that would normally get you thrown out of your wife's doctor's appointments, but in our case the nurse drew the happy face. This seems all very funny at the doctor's office, but it results in uncontrolled giggling when you are sitting there with a giant needle getting reading to lance a happy face on your wife's posterior. For some reason, my bent over wife did not see the humor in the situation which only resulted in even more uncontrolled giggling from me. Luckily, we did not have to try it a third time because my wife said she was working on a few ideas of what she was going to have the nurse write on her butt to greet me the next round.
So, I will leave on this cliffhanger, did we get pregnant, did we have a baby, is the baby keeping me from blogging as regularly as I would like? I think you know the answer, but I will talk about it more tomorrow.
We had been wanting to start a family for a while, and were actively trying for around a year. A few days before I started chemo we found out that we were pregnant. It seemed like the typical feel good story, boy loses job, boy loses ball, but before he lost that nut boy and girl get pregnant. There was a whirlwind of emotions, it was something we desperately wanted, but the timing couldn't be worse. Chemo works by being a very nasty drug that is easily absorbed by anything that grows quickly in the human body, like cancer cells, hair, taste buds, and unfortunately babies. Because of this the first week I had to take tons of precautions around my wife making sure that she did not come into any contact with anything that may have the chemo in it. Even using the bathroom involved closing the lid, covering the lid with a heavy towel, and flushing the toilet twice. I never realized how long it takes a toilet to flush until I had to stand, weakened from chemo, waiting for it to finish flushing twice so I could remove the towel and go back to my normal routine.
After we went through all of this trouble, we lost the baby. It was very early in the pregnancy, and to say we were stressed during this time would be an understatement. What we found out after this was the staggering percentage of first time pregnancies that end in miscarriage, however that didn't make us feel any better. It was a third blow to us in less than two months. It was the ray of hope we had been focused on through chemo. Of course many things ran through my mind, like was it my fault for missing a chemo precaution and maybe I should have postponed my treatment.
The next few weeks were a mass of confusing information. Some people say to try again right away, others say wait. Some doctors say don't try so soon after chemo, others say it is fine the swimmers either die from the chemo or are not affected. My urologist said to just give up for at least six months, but my oncologist urged us to see a fertility specialist because we "needed something good in our lives". And he was right.
The first thing a fertility specialist tries to determine is which partner is causing the trouble. This makes tons of sense, I mean treat the person with the problem(s), right? So, my poor wife goes through a series of tests that look like the set of a alien abduction movie. I still have nightmares about some other the stainless steel contraptions I saw. I also had to go through a series of grueling tests that involved me going into a room, and being provided with dirty magazines, dirty movies, and a cup. It was horrible for me, mainly because I had already read all of the magazines when we "banked" some samples before my surgery.
So after my wife goes through her series of probings and shots, and I watch a few movies, we find out that...surprise surprise the problem looks like it is with the guy with the testicular cancer and chemo. Who would've guessed? The doc was very supportive and said with very little intervention, we could use my frozen stuff and probably be successful. No nasty chemicals, no danger of having "Plus 8" after our names or being chased by reality TV producers, for the most part things are pretty normal...except one.
This technique required me to give my wife a shot in her gluteus maximus the night before the procedure. Our doctor was very supportive and involved so they even drew and "X" on the targeted butt cheek to show the exact spot that the injection needs to be placed. Well, the first round didn't work, so when went for the second try the next month, I asked the nurse if instead of an "X" if she could draw a happy face so I could "jab it between the eyes with the needle". See, these are the kinds of suggestions that would normally get you thrown out of your wife's doctor's appointments, but in our case the nurse drew the happy face. This seems all very funny at the doctor's office, but it results in uncontrolled giggling when you are sitting there with a giant needle getting reading to lance a happy face on your wife's posterior. For some reason, my bent over wife did not see the humor in the situation which only resulted in even more uncontrolled giggling from me. Luckily, we did not have to try it a third time because my wife said she was working on a few ideas of what she was going to have the nurse write on her butt to greet me the next round.
So, I will leave on this cliffhanger, did we get pregnant, did we have a baby, is the baby keeping me from blogging as regularly as I would like? I think you know the answer, but I will talk about it more tomorrow.
Wednesday, August 10, 2011
An Xray, 3 Blood Tests, And A CATscan Down, Now Shove A Camera Down My Throat
I am finishing up my latest round of scans. In the past three weeks, it seems I have been tested every other day. I haven't actually been tested every other day, but medical providers have still found a way to bill me every other day. So far I have finished a chest X-ray, a CATscan, CBC, tumor marker blood test, and in a matter of hours a upper endoscopy (with jumbo biopsies, YIPPEE!), oh yeah and peeing into the random cup every once in a while too. I just hope I was supposed to pee in that one cup, because the nurse gave me a funny look, and I don't remember specimen cups saying "Moe's Southwest Grill" on the side...
The X-rays were as expected. I raise my hands above my head while the nurse shoves me against the wall like she's on COPS and I am an unruly suspect (one time I accidentally yelled out "Don't tase me bro" during the test). The blood and urine tests were pretty routine as well. I get asked for a body fluid, and I deposit it into whatever receptacle they hold in front of me. The only problem was a slight miscalculation on driving time/fluid intake, which required me to make the receptionist wait for my insurance co-pay until after I gave them a sample.
The one thing I wasn't expecting was a CATscan. When I decided to do chemo over testing (mainly dozens of CATscans) I knew I would still have to get the occasional CATscan, I just wasn't expecting it to be so soon after my last oncologist appointment. As soon as he ordered it, I had flashbacks of the taste of the contrast dye and the associated CATstipation. Not wanting to roll around on the floor in impacted and backed up pain again, I had taken two liter bottles of water with me to do some mega-hydrating on the drive back from the hospital. Luckily, I didn't start drinking them yet, because when I arrived I was told I would not be drinking the slightly flavored chalky substance. They had a new water based contrast, but I had to drink a liter of it in an hour. Still skeptical, I apprehensively took a taste. It tasted like Terre Haute water, which for those of you that haven't been to/smelled Terre Haute, IN, it kinda taste like...well...have you ever put a cooler away and forgotten to drain it? Well, it kinda tastes like that smells. Not good, but not bad either, and definitely better than the nasty, chalky, constipatitiony, bottomless cup of sludge that I had to drink before.
Within a few days, I got all of my results back, X-ray's and scans were clean. Urine and blood tests were normal, and tumor marker's still dropping. So now I am preparing for my endoscopy tomorrow. My preparation involves mainly not eating after midnight and not sleeping. I have literally had more scopes than I can count, all I know is that I am in double digits, and I have developed a routine. I stay up late the night before, I go into the hospital barely awake, I get some Demerol shoved in my vein, and I wake up with my wife giving me dirty looks because I apparently won't wake up and I ask the same questions over and over again.
See, in my long history of scopes, there are two things I don't like about them. One time I woke up when they snapped the plastic guide between my teeth, and the feeling/sound was not a pleasant experience. Now they say you don't remember anything from the scope, but obviously if I just told you about that, I did remember it, because they don't put that thing in your mouth before you go in there and it is out before you wake up, so the only way I would know about it is to wake up during the procedure, and remember it (and I also remember hearing the doctor say, "He's waking up, give him so more."). The other thing, is for some reason the oxygen tube that they stick in your nose, makes me feel like I am drowning. OK, OK, I will wait for you to quit laughing at me. Are you done? So, I don't know why I have that feeling, but I do. If I am totally out, it's no big deal. If I am kinda out, I wake up, thrashing saying I can't breathe (which just by saying "I can't breathe" it proves I can breathe, but anyway), and before I know it I am sedated again and I wake up with straps on my arms. For the comfort and safety of myself and the nurses attending to me, I have found that we are all much happier, if I am completely out of it during the scope.
As far as tests go, an endoscopy really isn't that bad. The bad thing is, they keep you from eating for so long before, and for my condition they take out large biopsies in my throat to send to a pathologist, which leaves me waking up starving, but yet it hurts to swallow. It's like some cruel joke the doctor's and nurses play on me, maybe in some sort of retaliation for thrashing around during the procedure acting like I'm drowning. At any rate, I am ready to get this test over with and anxious to hear my results. With this test behind me I am through with doctors (for me) until November. Hopefully, the nurses will loosen my straps tomorrow and I can come home and tell you how everything went.
The X-rays were as expected. I raise my hands above my head while the nurse shoves me against the wall like she's on COPS and I am an unruly suspect (one time I accidentally yelled out "Don't tase me bro" during the test). The blood and urine tests were pretty routine as well. I get asked for a body fluid, and I deposit it into whatever receptacle they hold in front of me. The only problem was a slight miscalculation on driving time/fluid intake, which required me to make the receptionist wait for my insurance co-pay until after I gave them a sample.
The one thing I wasn't expecting was a CATscan. When I decided to do chemo over testing (mainly dozens of CATscans) I knew I would still have to get the occasional CATscan, I just wasn't expecting it to be so soon after my last oncologist appointment. As soon as he ordered it, I had flashbacks of the taste of the contrast dye and the associated CATstipation. Not wanting to roll around on the floor in impacted and backed up pain again, I had taken two liter bottles of water with me to do some mega-hydrating on the drive back from the hospital. Luckily, I didn't start drinking them yet, because when I arrived I was told I would not be drinking the slightly flavored chalky substance. They had a new water based contrast, but I had to drink a liter of it in an hour. Still skeptical, I apprehensively took a taste. It tasted like Terre Haute water, which for those of you that haven't been to/smelled Terre Haute, IN, it kinda taste like...well...have you ever put a cooler away and forgotten to drain it? Well, it kinda tastes like that smells. Not good, but not bad either, and definitely better than the nasty, chalky, constipatitiony, bottomless cup of sludge that I had to drink before.
Within a few days, I got all of my results back, X-ray's and scans were clean. Urine and blood tests were normal, and tumor marker's still dropping. So now I am preparing for my endoscopy tomorrow. My preparation involves mainly not eating after midnight and not sleeping. I have literally had more scopes than I can count, all I know is that I am in double digits, and I have developed a routine. I stay up late the night before, I go into the hospital barely awake, I get some Demerol shoved in my vein, and I wake up with my wife giving me dirty looks because I apparently won't wake up and I ask the same questions over and over again.
See, in my long history of scopes, there are two things I don't like about them. One time I woke up when they snapped the plastic guide between my teeth, and the feeling/sound was not a pleasant experience. Now they say you don't remember anything from the scope, but obviously if I just told you about that, I did remember it, because they don't put that thing in your mouth before you go in there and it is out before you wake up, so the only way I would know about it is to wake up during the procedure, and remember it (and I also remember hearing the doctor say, "He's waking up, give him so more."). The other thing, is for some reason the oxygen tube that they stick in your nose, makes me feel like I am drowning. OK, OK, I will wait for you to quit laughing at me. Are you done? So, I don't know why I have that feeling, but I do. If I am totally out, it's no big deal. If I am kinda out, I wake up, thrashing saying I can't breathe (which just by saying "I can't breathe" it proves I can breathe, but anyway), and before I know it I am sedated again and I wake up with straps on my arms. For the comfort and safety of myself and the nurses attending to me, I have found that we are all much happier, if I am completely out of it during the scope.
As far as tests go, an endoscopy really isn't that bad. The bad thing is, they keep you from eating for so long before, and for my condition they take out large biopsies in my throat to send to a pathologist, which leaves me waking up starving, but yet it hurts to swallow. It's like some cruel joke the doctor's and nurses play on me, maybe in some sort of retaliation for thrashing around during the procedure acting like I'm drowning. At any rate, I am ready to get this test over with and anxious to hear my results. With this test behind me I am through with doctors (for me) until November. Hopefully, the nurses will loosen my straps tomorrow and I can come home and tell you how everything went.
Saturday, May 14, 2011
Summer's Here, Time To Hurt Yourself!
The past couple of days, I have had every intention of hurting myself. No not in one of those cries for help sort of ways, but just in pushing my self more and more to get back to normal. I still haven't tackled the dangling a push mower down the ditch yet. I am really afraid that may undo all the healing I have been doing, so when I do finally get around to attempting it, I will do it as gingerly as one can dangle a push mower down a ditch without simultaneously chopping off body parts. Just the fact that the engine starts to cut out because the mower is at such an extreme angle that it can't get gas, shows that maybe this isn't a recommended use of this particular mower.
However, that wasn't a problem yesterday. I had intended to do it, but secretly hoped something would come up to keep me from having to do it, and luckily plenty of things did. I spent some of the early part of the day helping my good friend with the project we are tackling. After that I waited for a HVAC company that claims "1 hour service" to call me back....that's been about 36 hours ago, and I am still waiting for a call back on the message I left. The reason, our thermostat decided that when the air conditioner kicks on, the house will cool down like it is supposed to, but the temperature reading will go UP! And that keeps the air conditioner on. You notice this when you look at the thermostat and it reads 87, while the other thermometer in the house reads 72 (and that is the real disparity in numbers we had when we first noticed the problem). A little research on the company turned up information that all electronic thermostats from this particular company do this. I won't mention their name because I don't want to embarrass Honeywell. I finally called in to our HVAC company through a different line (not a repair line) and asked them if they could fix this. They said yes they would replace it...in five days. I asked if they carried any other brands than the one they installed and they didn't. Frustrated I decided to runaway from the problem and went out to mow some of the muddy areas of the yard with the riding mower.
Now our mower is an commercial grade mower that we had to buy because someone keeps running into stuff bending the deck on regular mowers. I won't say who that someone is, but it's not me and it's probably my wife. Because of this, the mower weighs 1400 lbs. (about 650Kg) and because of its massive weight it gets stuck if there is any amount of moisture on the ground. While attempting to mow the parts of the yard that were too wet before, I hit a puddle or moss or gnat pee, whatever it was, the mower became hopelessly stuck. Now for reasons that I won't go into right now, I am the only one currently able to run this mower, so there was no one to drive the mower while I attempted to pull it out. So I did one any red blooded American male would do that has a Jeep and at least one ball (which I barely qualify for), I hooked up the Jeep and dropped it in four wheel drive low and jerked the crap out of it. You may have seen in the news where the day was .25 seconds shorter yesterday, that's because the massive torque of my Jeep pulling out this mower actually stopped the Earth's rotation for a brief moment. After these shenanigans were done, it was pretty much too late to attempt the ditch mowing/incision ripping yesterday.
So today I got up and went to a hardware store to find a thermostat that didn't have "Honeywell" stamped on it. I found one and then had to pick up a bag of concrete for another project we are doing. I found the correct type of concrete (for the record, there are approximately 75 different types of concrete and no matter what your project, there will be exactly 1 (one) bag that kinda fits what you are needing to do, and it will be on a very high shelf). I look straight at the bag...literally, because someone at Home Depot decided that this particular type of concrete needed to be about five feet in the air, and it dawned on me as I read "80 lbs." on the side of the bag that: A) I haven't lifted 80 lbs. since my surgery, I am officially supposed to be closer to 30lbs., and B) I can't bring the Jeep in to help me with this one. I briefly thought about asking for help, but two things occurred to me: 1) Guys are not supposed to ask for any sort of help whatsoever in a hardware store unless it is a veiled attempt to prove they know more than the person they are talking to, and 2) I have about as much chance of finding and employee at Home Depot to help me as I do of finding the Loch Ness Monster, Elvis, Jimmy Hoffa, and a regular cast member from Alf. Now Andrea Elson did walk by while I was contemplating the next move, but without Elvis, Jimmy, and Nessie she wouldn't have been much help. So I did what any self respecting guy would do, I picked up the bag anyway, rather than get help, and waited for the "pop" down below. I firmly grabbed the bag and just as gracefully has a Olympic weight lifter clean and jerks 1000 lbs., I put the concrete in the cart...OK, it was less like an Olympic weight lifter and more like a out of shape fat guy struggling to lift more weight than he lifted in eight months (outside of Golden Corral) all the while trying not drag the bag (which they for some reason make out of paper just slightly thicker than tissue paper) over anything that might snag it, causing it to burst open cartoonishly burying my feet in 80 lbs. of concrete, while at the same time trying to keep me from bursting open cartoonishly burying my feet in a large pile of my intestines. Unfortunately for the person watching me on the security camera I was able to load the concrete without any comic mishaps (yes, they actually have a sign in the concrete section pointing to the security camera, maybe that is a sign you are way understaffed if someone can grab an 80 lbs. bag of concrete and no one notices nor is able to catch someone fleeing with 80 lbs. of concrete).
Eventually, I made it home and the first thing I had to do, with the air conditioner running like an out of control Trane, was replace the thermostat. The thermostat contains slightly more wires than the Space Shuttle, except with fewer directions. After approximately 47 hours of cursing, reading, taking a Spanish course, reading the other manual, taking a Hindi course, calling tech support, and some Eeny Meeny Miney Mo, I was able to hook up the thermostat with a minimum amount of smoke and sparks. As I was wrapping up, a large storm hit, effectively ending my mowing/stomach shredding/toe slicing plans for the day.
I don't know if the events keeping me from mowing the ditch are a bit of Divine Intervention or just me being lazy and slow, but I will welcome the postponements no matter what the reasons. I just don't know what I am going to break to get out of it tomorrow...
However, that wasn't a problem yesterday. I had intended to do it, but secretly hoped something would come up to keep me from having to do it, and luckily plenty of things did. I spent some of the early part of the day helping my good friend with the project we are tackling. After that I waited for a HVAC company that claims "1 hour service" to call me back....that's been about 36 hours ago, and I am still waiting for a call back on the message I left. The reason, our thermostat decided that when the air conditioner kicks on, the house will cool down like it is supposed to, but the temperature reading will go UP! And that keeps the air conditioner on. You notice this when you look at the thermostat and it reads 87, while the other thermometer in the house reads 72 (and that is the real disparity in numbers we had when we first noticed the problem). A little research on the company turned up information that all electronic thermostats from this particular company do this. I won't mention their name because I don't want to embarrass Honeywell. I finally called in to our HVAC company through a different line (not a repair line) and asked them if they could fix this. They said yes they would replace it...in five days. I asked if they carried any other brands than the one they installed and they didn't. Frustrated I decided to runaway from the problem and went out to mow some of the muddy areas of the yard with the riding mower.
Now our mower is an commercial grade mower that we had to buy because someone keeps running into stuff bending the deck on regular mowers. I won't say who that someone is, but it's not me and it's probably my wife. Because of this, the mower weighs 1400 lbs. (about 650Kg) and because of its massive weight it gets stuck if there is any amount of moisture on the ground. While attempting to mow the parts of the yard that were too wet before, I hit a puddle or moss or gnat pee, whatever it was, the mower became hopelessly stuck. Now for reasons that I won't go into right now, I am the only one currently able to run this mower, so there was no one to drive the mower while I attempted to pull it out. So I did one any red blooded American male would do that has a Jeep and at least one ball (which I barely qualify for), I hooked up the Jeep and dropped it in four wheel drive low and jerked the crap out of it. You may have seen in the news where the day was .25 seconds shorter yesterday, that's because the massive torque of my Jeep pulling out this mower actually stopped the Earth's rotation for a brief moment. After these shenanigans were done, it was pretty much too late to attempt the ditch mowing/incision ripping yesterday.
So today I got up and went to a hardware store to find a thermostat that didn't have "Honeywell" stamped on it. I found one and then had to pick up a bag of concrete for another project we are doing. I found the correct type of concrete (for the record, there are approximately 75 different types of concrete and no matter what your project, there will be exactly 1 (one) bag that kinda fits what you are needing to do, and it will be on a very high shelf). I look straight at the bag...literally, because someone at Home Depot decided that this particular type of concrete needed to be about five feet in the air, and it dawned on me as I read "80 lbs." on the side of the bag that: A) I haven't lifted 80 lbs. since my surgery, I am officially supposed to be closer to 30lbs., and B) I can't bring the Jeep in to help me with this one. I briefly thought about asking for help, but two things occurred to me: 1) Guys are not supposed to ask for any sort of help whatsoever in a hardware store unless it is a veiled attempt to prove they know more than the person they are talking to, and 2) I have about as much chance of finding and employee at Home Depot to help me as I do of finding the Loch Ness Monster, Elvis, Jimmy Hoffa, and a regular cast member from Alf. Now Andrea Elson did walk by while I was contemplating the next move, but without Elvis, Jimmy, and Nessie she wouldn't have been much help. So I did what any self respecting guy would do, I picked up the bag anyway, rather than get help, and waited for the "pop" down below. I firmly grabbed the bag and just as gracefully has a Olympic weight lifter clean and jerks 1000 lbs., I put the concrete in the cart...OK, it was less like an Olympic weight lifter and more like a out of shape fat guy struggling to lift more weight than he lifted in eight months (outside of Golden Corral) all the while trying not drag the bag (which they for some reason make out of paper just slightly thicker than tissue paper) over anything that might snag it, causing it to burst open cartoonishly burying my feet in 80 lbs. of concrete, while at the same time trying to keep me from bursting open cartoonishly burying my feet in a large pile of my intestines. Unfortunately for the person watching me on the security camera I was able to load the concrete without any comic mishaps (yes, they actually have a sign in the concrete section pointing to the security camera, maybe that is a sign you are way understaffed if someone can grab an 80 lbs. bag of concrete and no one notices nor is able to catch someone fleeing with 80 lbs. of concrete).
Eventually, I made it home and the first thing I had to do, with the air conditioner running like an out of control Trane, was replace the thermostat. The thermostat contains slightly more wires than the Space Shuttle, except with fewer directions. After approximately 47 hours of cursing, reading, taking a Spanish course, reading the other manual, taking a Hindi course, calling tech support, and some Eeny Meeny Miney Mo, I was able to hook up the thermostat with a minimum amount of smoke and sparks. As I was wrapping up, a large storm hit, effectively ending my mowing/stomach shredding/toe slicing plans for the day.
I don't know if the events keeping me from mowing the ditch are a bit of Divine Intervention or just me being lazy and slow, but I will welcome the postponements no matter what the reasons. I just don't know what I am going to break to get out of it tomorrow...
Wednesday, May 11, 2011
There's More To Recovery Than Just Recovery...
Today I spent the morning with a good friend who is recovering from her own serious health condition. We got into a conversation about how hard it is to recover from a serious illness, not necessarily physically but mentally as well. There are so many aspects to recovery that get overlooked because caregivers are focused on, well recovery, but just physical. The medical profession seems to think if they fixed your ailment, you're done.
One thing I noticed since my cancer diagnosis, is before I found out I had cancer, I did routine checks for testicular cancer. I had a doctor in 1998 tell me it would be a good idea to check and I did the checks often, sometimes twice or more a day depending on how many other people were in the pool at the time, but every since I found the cancer, I hardly check. The ironic thing is, I have about half as much to check after the cancer, so you would think it would be easier to check now. However, I could probably count the times I have checked since then on one hand...not that hand the other one, the non-checking hand. I don't know why, but I have developed an aversion to checking myself since I had actually found something. Luckily, since I still manage to see one professional or another approximately every forty three minutes, I am getting checked enough right now by other people, so I don't need to worry about it, my family doctor, my urologist, my oncologist, my friend's overly curious dog, that TSA guy behind me in line at Arby's the other day, well at least I think it was a TSA uniform, or it could have been a bus driver's uniform, who ever it was he was very gentle and paid for my Arby-Q. I brought this issue up at my cancer support group to see if any other of the self examiners had the same mental block after diagnosis, but unfortunately the breast cancer survivors weren't there that day. There were a few prostate cancer survivors, but they didn't look flexible enough to perform self exams.
When down physically for so long, it takes a while to get back in the swing of things. The doctors pretty much force you to be a couch potato through weight restrictions and other warnings of dyer consequences if you overexert. After weeks, or even months, of continuously watching daytime TV, it's hard to get back into a routine of getting up, moving around, and even concentrating on anything that doesn't involve paternity testing, especially during Oprah's last season! And even when you do start to move about and get braver and braver, there can be certain obstacles in your daily life that look insurmountable. As part of my mowing routine, I have to dangle a push mower down a very steep embankment about five feet, pull it back up, and try to keep my toes out of the way the whole time I am struggling with it. This is something that leaves me physically drained and crippled on a good day, I will admit, I am scared to death to do it when I still haven't been released to do that sort of thing from the doctor that performed my surgery.
Then there is just the mental recovery. Believe it or not, you feel like your brain gets flabby from not being used while you were recovering. I tried to keep my brain sharp by first reading Yahoo articles on-line, then working my way up to on-line versions of magazines, then newspapers, and even tried to read a few books on-line. It was months into my recovery before I realized I had just been looking at porn the whole time, which I would stop, but I am not quite done with this article. The point being, when you brain isn't working as hard as it had in the past, it takes a while to be able to stare at a computer screen for hours on end again (especially if there is no porn on that computer screen).
One last part of mental recovery I will mention, kinda relates to one of the first things I mentioned, and that is the fear that you are not quite well yet, or that it will come back. There is a reason that until recently, oncologists would never use the word "cured" they would just say "remission". I don't know that I will ever get over the fear that the cancer isn't quite gone, or that it's hiding somewhere else, or that it's just not big enough to show up on tests yet, or that it's lying dormant, or, or, or, or....with so much of cancer being an unknown, how do we as patients feel secure in our "cured" diagnoses? And am I sure our families/caregivers/support networks have the same fears, whether they will verbalize them or not.
I guess in many ways, recovering from a serious illness is like a "recovering alcoholic". Sure, Bill W. never plans on having another drink, but he knows that threat is always lurking in the background. In much the same way, I don't ever plan on having cancer again, but I know there is a possibility, however slight, that it could be hiding somewhere. Maybe I should do some more internet "reading" and a self-exam just to make sure there's no cancer left.
One thing I noticed since my cancer diagnosis, is before I found out I had cancer, I did routine checks for testicular cancer. I had a doctor in 1998 tell me it would be a good idea to check and I did the checks often, sometimes twice or more a day depending on how many other people were in the pool at the time, but every since I found the cancer, I hardly check. The ironic thing is, I have about half as much to check after the cancer, so you would think it would be easier to check now. However, I could probably count the times I have checked since then on one hand...not that hand the other one, the non-checking hand. I don't know why, but I have developed an aversion to checking myself since I had actually found something. Luckily, since I still manage to see one professional or another approximately every forty three minutes, I am getting checked enough right now by other people, so I don't need to worry about it, my family doctor, my urologist, my oncologist, my friend's overly curious dog, that TSA guy behind me in line at Arby's the other day, well at least I think it was a TSA uniform, or it could have been a bus driver's uniform, who ever it was he was very gentle and paid for my Arby-Q. I brought this issue up at my cancer support group to see if any other of the self examiners had the same mental block after diagnosis, but unfortunately the breast cancer survivors weren't there that day. There were a few prostate cancer survivors, but they didn't look flexible enough to perform self exams.
When down physically for so long, it takes a while to get back in the swing of things. The doctors pretty much force you to be a couch potato through weight restrictions and other warnings of dyer consequences if you overexert. After weeks, or even months, of continuously watching daytime TV, it's hard to get back into a routine of getting up, moving around, and even concentrating on anything that doesn't involve paternity testing, especially during Oprah's last season! And even when you do start to move about and get braver and braver, there can be certain obstacles in your daily life that look insurmountable. As part of my mowing routine, I have to dangle a push mower down a very steep embankment about five feet, pull it back up, and try to keep my toes out of the way the whole time I am struggling with it. This is something that leaves me physically drained and crippled on a good day, I will admit, I am scared to death to do it when I still haven't been released to do that sort of thing from the doctor that performed my surgery.
Then there is just the mental recovery. Believe it or not, you feel like your brain gets flabby from not being used while you were recovering. I tried to keep my brain sharp by first reading Yahoo articles on-line, then working my way up to on-line versions of magazines, then newspapers, and even tried to read a few books on-line. It was months into my recovery before I realized I had just been looking at porn the whole time, which I would stop, but I am not quite done with this article. The point being, when you brain isn't working as hard as it had in the past, it takes a while to be able to stare at a computer screen for hours on end again (especially if there is no porn on that computer screen).
One last part of mental recovery I will mention, kinda relates to one of the first things I mentioned, and that is the fear that you are not quite well yet, or that it will come back. There is a reason that until recently, oncologists would never use the word "cured" they would just say "remission". I don't know that I will ever get over the fear that the cancer isn't quite gone, or that it's hiding somewhere else, or that it's just not big enough to show up on tests yet, or that it's lying dormant, or, or, or, or....with so much of cancer being an unknown, how do we as patients feel secure in our "cured" diagnoses? And am I sure our families/caregivers/support networks have the same fears, whether they will verbalize them or not.
I guess in many ways, recovering from a serious illness is like a "recovering alcoholic". Sure, Bill W. never plans on having another drink, but he knows that threat is always lurking in the background. In much the same way, I don't ever plan on having cancer again, but I know there is a possibility, however slight, that it could be hiding somewhere. Maybe I should do some more internet "reading" and a self-exam just to make sure there's no cancer left.
Monday, May 9, 2011
"If I Leave You It Doesn't Mean I Love You Any Less"
For the second day in a row I am starting off with a Warren Zevon quote. While Warren was dying of mesothelioma he wrote a song to his wife with the line "if I leave you it doesn't mean I love you any less". It was a touching line when I first heard it and a much more powerful line after my cancer diagnosis. I think the first reaction when you are diagnosed, is to wonder if you are going to survive. The second reaction is if you don't survive, what will that do to your family? What a brilliantly simple way of expressing how we feel. If cancer takes us, it doesn't mean that we want to go.
I "graduated" from the Wellness Community this week. I won't say I am 100% over all of this stuff, heck for one thing I haven't officially been released from the urologist yet, but cancer is no longer the prevailing thought in my mind anymore. Granted there are other things going on in my life right now that are taking my focus off that crap, which is a good thing. I don't know if I would feel this far removed from cancer otherwise, but the point is I do and that's all that matters. It's hard to believe my cancerversary is coming up in just a few months!
The Wellness Community and more importantly the people in my support group have been very...well supportive. I was hoping there would be a big crowd there so I could say "bye", but there was only the facilitator and one other guy, who happened to be my favorite guy and the one that helped me the most. This particular guy (without giving any identifying information, which is a no-no for a support group) has lived with cancer for literally decades. Not a survivor, LIVED WITH CANCER as in still has cancer! There is another in my group that has lived with cancer for about a decade as well. Do you know how comforting that is to someone who just got diagnosed? Even if you aren't cured, here is living proof that you can live with cancer and look like a normal non-cancer-having person! And the thing I was most impressed with these two individuals was they were the most upbeat of the group. They weren't cursing their maker or bitter at the world. They were positive. With just my favorite guy in my final meeting, I was able to spend a lot of time telling him just how important he has been to my emotional recovery. I wish there were a couple of others there that I wanted to thank, but that's what e-mail is for.
Now to complain about my group for just one second. One thing I did get off my chest was there was an incredibly negative individual that almost caused me to quit the group. This person was CURED but didn't want to believe it and spent the whole meeting going on about how if you had cancer once it stays in you forever and it can pop up anytime, even if the doctor says you are in remission or even cured. That is not something I wanted to be around just out of my surgery and facing chemotherapy. Luckily, the lady from the No Boobs About It blog warned me that there is one of those people in every group, to just try to ignore them. I am glad she told me that. The only other complaint I have with my group (and people in general) sometimes when life looks the darkest, people give up on you. Most cancer patients have ups and downs in their care, and some people in the group would start referring to people in the past tense that were struggling in their fight. The whole time Monty Python and the Holy Grail was running through my head "I'm not dead yet..." All of the people referred to in the past tense have gotten better! Thank God (literally) that they had better outlooks on their own lives than some of their supporters.
But all in all, I loved the Wellness Community and the support everyone gave me. I didn't really want to leave, but I didn't feel it was right for me to be there anymore, since I feel less and less like a cancer patient and more like a cancer survivor. I wanted to thank everyone for what they did with a gift, however I couldn't just give gifts because I am still unemployed and don't have a lot of money flowing in right now. I would have liked to cook something and bring it in (and let's just pretend for a moment that my cooking is tolerable) but when you are on chemo, you can be super sensitive to tastes and smells (I still won't touch pasta and shun salt, two things I enjoyed before chemo) so food is not even allowed inside the room we meet in. So that left me with my favorite thing, music.
Not only have I worked extensively in music running record stores, as a club DJ, and even with a record company being required to hang out with rock stars for three years, but I have always used music to alter my mood and relate to others. Back in the day, years before I even met my wife (if she is reading this) I would make mix tapes and CD's to open doors to hot girls that would inevitably ask for more CDs and less of me. More recently, I boil my music collection to moods. I have several CDs I put together just to keep me awake on roadtrips. I have CDs I made to listen to just when I want to sing loud in the car with no one around. I have a CD I made to listen to when you are in a pissed off mood (which I largely gathered from my wife's music collection, I don't know what that means, I'm just saying...). And I have made CDs just to put me in a good mood. So that is what I did, I made CDs for my group, happy CDs. You know, songs that are just impossible to be sad while listening to, stuff like LFO's Summer Girls, Spice Girls' Wannabe, and Hanson's MmmBop...OK, I am lying, I like most people over the age of two and with most of their faculties hate those songs. That was just a list of my sister's CD collection. (The funny thing here, is I have to approve all comments before they are posted, so there is no way for her to refute this on my page. But I am sure there will be retribution on hers.) But I did put together a list of twenty songs from 1952 to the mid 1990s that just make you feel good. I don't know if they will appreciate them or not, but even if they don't, at least I gave them a new shiny coaster.
So Thursday, Warren's lyrics held a different meaning to me. I didn't want to leave the friendships, but it was time for me to leave the group. And although I can't specifically identify people or illnesses, I will vaguely take a moment to say some "thank yous". Thank you Bill for showing me how one person can face cancer and act like...well someone that doesn't have cancer. Thank you Susan for having that magic folder where much like a Magic 8 Ball, you ask a question, you reach your hand in, and pull out a print out with the answer. Thank you Ann for showing just how hard one human can fight, and still retain grace and dignity the whole time. Thank you Cary for taking a bad situation and turning it around for something good. And most of all thank you Ned, no doubt your family sacrificed a great deal for the benefit of so many others, and I will never be able to express my gratitude sufficiently. And there are many others at the group that helped me, and I don't mean to play favorites here...but I am (did). And it's not like anyone actually reads these anyway, so there is not really anyone to offend with an omission. Even though I didn't place that Warren Zevon song (Keep Me In Your Heart For A While) on the CD I made, because although very poignant and beautiful it's also incredibly depressing, I graduate from and depart the Wellness Community with those words in my heart and mind, "If I leave you it doesn't mean I love you any less".
I "graduated" from the Wellness Community this week. I won't say I am 100% over all of this stuff, heck for one thing I haven't officially been released from the urologist yet, but cancer is no longer the prevailing thought in my mind anymore. Granted there are other things going on in my life right now that are taking my focus off that crap, which is a good thing. I don't know if I would feel this far removed from cancer otherwise, but the point is I do and that's all that matters. It's hard to believe my cancerversary is coming up in just a few months!
The Wellness Community and more importantly the people in my support group have been very...well supportive. I was hoping there would be a big crowd there so I could say "bye", but there was only the facilitator and one other guy, who happened to be my favorite guy and the one that helped me the most. This particular guy (without giving any identifying information, which is a no-no for a support group) has lived with cancer for literally decades. Not a survivor, LIVED WITH CANCER as in still has cancer! There is another in my group that has lived with cancer for about a decade as well. Do you know how comforting that is to someone who just got diagnosed? Even if you aren't cured, here is living proof that you can live with cancer and look like a normal non-cancer-having person! And the thing I was most impressed with these two individuals was they were the most upbeat of the group. They weren't cursing their maker or bitter at the world. They were positive. With just my favorite guy in my final meeting, I was able to spend a lot of time telling him just how important he has been to my emotional recovery. I wish there were a couple of others there that I wanted to thank, but that's what e-mail is for.
Now to complain about my group for just one second. One thing I did get off my chest was there was an incredibly negative individual that almost caused me to quit the group. This person was CURED but didn't want to believe it and spent the whole meeting going on about how if you had cancer once it stays in you forever and it can pop up anytime, even if the doctor says you are in remission or even cured. That is not something I wanted to be around just out of my surgery and facing chemotherapy. Luckily, the lady from the No Boobs About It blog warned me that there is one of those people in every group, to just try to ignore them. I am glad she told me that. The only other complaint I have with my group (and people in general) sometimes when life looks the darkest, people give up on you. Most cancer patients have ups and downs in their care, and some people in the group would start referring to people in the past tense that were struggling in their fight. The whole time Monty Python and the Holy Grail was running through my head "I'm not dead yet..." All of the people referred to in the past tense have gotten better! Thank God (literally) that they had better outlooks on their own lives than some of their supporters.
But all in all, I loved the Wellness Community and the support everyone gave me. I didn't really want to leave, but I didn't feel it was right for me to be there anymore, since I feel less and less like a cancer patient and more like a cancer survivor. I wanted to thank everyone for what they did with a gift, however I couldn't just give gifts because I am still unemployed and don't have a lot of money flowing in right now. I would have liked to cook something and bring it in (and let's just pretend for a moment that my cooking is tolerable) but when you are on chemo, you can be super sensitive to tastes and smells (I still won't touch pasta and shun salt, two things I enjoyed before chemo) so food is not even allowed inside the room we meet in. So that left me with my favorite thing, music.
Not only have I worked extensively in music running record stores, as a club DJ, and even with a record company being required to hang out with rock stars for three years, but I have always used music to alter my mood and relate to others. Back in the day, years before I even met my wife (if she is reading this) I would make mix tapes and CD's to open doors to hot girls that would inevitably ask for more CDs and less of me. More recently, I boil my music collection to moods. I have several CDs I put together just to keep me awake on roadtrips. I have CDs I made to listen to just when I want to sing loud in the car with no one around. I have a CD I made to listen to when you are in a pissed off mood (which I largely gathered from my wife's music collection, I don't know what that means, I'm just saying...). And I have made CDs just to put me in a good mood. So that is what I did, I made CDs for my group, happy CDs. You know, songs that are just impossible to be sad while listening to, stuff like LFO's Summer Girls, Spice Girls' Wannabe, and Hanson's MmmBop...OK, I am lying, I like most people over the age of two and with most of their faculties hate those songs. That was just a list of my sister's CD collection. (The funny thing here, is I have to approve all comments before they are posted, so there is no way for her to refute this on my page. But I am sure there will be retribution on hers.) But I did put together a list of twenty songs from 1952 to the mid 1990s that just make you feel good. I don't know if they will appreciate them or not, but even if they don't, at least I gave them a new shiny coaster.
So Thursday, Warren's lyrics held a different meaning to me. I didn't want to leave the friendships, but it was time for me to leave the group. And although I can't specifically identify people or illnesses, I will vaguely take a moment to say some "thank yous". Thank you Bill for showing me how one person can face cancer and act like...well someone that doesn't have cancer. Thank you Susan for having that magic folder where much like a Magic 8 Ball, you ask a question, you reach your hand in, and pull out a print out with the answer. Thank you Ann for showing just how hard one human can fight, and still retain grace and dignity the whole time. Thank you Cary for taking a bad situation and turning it around for something good. And most of all thank you Ned, no doubt your family sacrificed a great deal for the benefit of so many others, and I will never be able to express my gratitude sufficiently. And there are many others at the group that helped me, and I don't mean to play favorites here...but I am (did). And it's not like anyone actually reads these anyway, so there is not really anyone to offend with an omission. Even though I didn't place that Warren Zevon song (Keep Me In Your Heart For A While) on the CD I made, because although very poignant and beautiful it's also incredibly depressing, I graduate from and depart the Wellness Community with those words in my heart and mind, "If I leave you it doesn't mean I love you any less".
Sunday, May 8, 2011
Enjoy Every Sandwich
I haven't spent much time on the computer lately because I was spending too much time on the computer. No, I wasn't actually doing anything on the computer, I was just watching it sit and lock up and restart. I can't complain too much, the computer I was using was from 2003. However, this week while helping a friend with a project, and sitting at the computer for literally an hour while it processed the request I was asking of it, I said enough was enough. After begging and pleading with my wife, I now have a brand new computer that actually turns on when you turn it on, and does what you ask it to do. I bought it yesterday and upon cleaning out the old computer and setting up my new one, I decided to check the speed of the thing by watching some video content that I have missed over the years. Not porn, because I make sure not to miss that, just everything from a Simpson's episode I missed last month to Warren Zevon's last appearance on David Letterman a few years back.
At my support group meeting two weeks ago, we discussed how all of us in the group, after having the inarguably life changing cancer diagnosis, all have adopted a more living-in-the-moment attitude. We were not talking about living your life like an anarchist, we were talking about living without regrets. When people say they live their life without regrets, they tend to mean that they stand by the decisions they made in their life, be them good or bad, because even bad decisions can be learning experiences. However, the living without regrets that we were referring to, is all of the times in our lives we have passed on an opportunity or not followed a dream for trivial reasons. They can be life decisions or just fun times we passed up with friends. Whether it be regretting not going to that concert with your buddy, or not having the opportunity to say "bye" to someone before it was too late, or not marrying Christie Turlington, there are several decisions in all of our lives we wish we could change or get that opportunity back.
Still unemployed, I have recently reevaluated my life and my career path. My latest career path started when I was volunteering while helping out my hometown during the floods along the Mississippi River. I loved working side by side with people to sandbag in an effort to save their house, business, church, or just the town in general. I later managed to get into the disaster business and found that in the disaster business, you don't really get to help those individuals anymore. I got more and more immersed in my job, working longer and weirder hours, seeing the people I wanted to help less and less. I got to teach disaster preparedness to people, which I loved, but my job was asking me to take a more supervisory role on that as well and have volunteers do that. When you work a job you love and you work long hours, the years go by, the job changes, and before you know it, the job you once loved, is no longer the same job, and you just love it out of habit. It dawned on me recently, that is what happened to me.
After the things that have happened in my life lately, I have analyzed what I enjoy. When you are faced with life altering events, you realize a job can be something you love doing and are willing to sacrifice for, something you hate doing, but it pays so much it gives you the opportunity to spend that money on your family enriching your life that way, for a lucky few like musicians and porn stars it could be a job that you both love and pays a lot, or it can be a job you hate, doesn't pay that well, and isn't rewarding. After talking with my wife, we both agreed that in this stage of our lives, I should look for either a job I really, really enjoy, a job that I maybe don't enjoy and doesn't pay much but allows me a lot of time with my family, or a job that pays ridiculous money that when I do get sometime off I can afford to jet off to Walt Disney World or buy expensive guitars (she says spend the money on the family, but that's not how I processed it in my mind). Just like we talked in my group, live in the moment, make sure your job is worth it to you, either monetarily or sense of accomplishment.
But we weren't just talking about jobs in my group. We were talking about everything in life, meeting that friend for lunch, dropping an e-mail to a sick friend, taking that trip, learning that skill you have always wanted, whatever. I wish I could live a week in Cinderella's Castle at Walt Disney World, get right out of bed walk straight to the Jungle Cruise and shoot an elephant in my PJs (how he got in my pajamas I'll never know...ya gotta love Groucho!). That is a trip that would probably bankrupt me and put a huge financial strain on my family for many years to come. That is not the type of thing we were talking about. However, for years my wife and I have dreamed of taking a trip out west, just driving and seeing the sights this country has to offer. That trip, I have no doubt we will take in the coming years when we are physically and financially able to go. For years, I have begged my parents to come to Florida with us. We went as a family one time and had a great experience. That was sixteen years ago. My wife and I are able to visit Florida frequently on a fairly cheap budget. I have invited my parents many times and offered many ways to help facilitate their travel down there. Time after time we are turned down and have basically heard from them that they will never travel that far again. It is something that really saddens me, especially since my cancer diagnosis. We don't know when God may call any of us back home. We don't know how much time we have with each other. Instead of just showing my parents photos and telling them what a great time we have in Florida, we would like to take them, show them, experience it with them (until they get tired and grumpy like old people tend to do, then we will lock them in a bathroom or something). I think what saddens me is not so much the repeated declines of our previous offers, but how they say they don't ever think they will make a trip like that again. I was taken to Disney Parks the first time by my family and I was kind of hoping that one day they would be there to experience it with their grandchild. Who knows, maybe they will be more adventurous by the time that opportunity rolls around, or at least senile enough that we can tell them we are taking them to Big Lots or something and Big Lots has a new one thousand mile long parking lot.
When Warren Zevon made his final appearance on David Letterman, he was well aware that he was dying from Mesothelioma. He knew it was the last time he would be on there. He knew that the breath that he drew to sing songs many people loved was being stolen more and more by the cancer filling his lungs. Warren had a great attitude and repeated many times through his dying days "Enjoy every sandwich." It may sound stupid and simple, but for anyone that has looked at a doctor waiting to hear a success rate or a chance of survivability we know exactly what he means. Do what you enjoy. Don't waste your time on things you don't enjoy. If you do have to do things you don't enjoy, make sure it's worth it in the end. Learn to love the gifts you are given in your life, the big ones and the little ones. Enjoy every sandwich. With that said, I am sore from typing and hungry for a sandwich, so it's time to get off of here.
At my support group meeting two weeks ago, we discussed how all of us in the group, after having the inarguably life changing cancer diagnosis, all have adopted a more living-in-the-moment attitude. We were not talking about living your life like an anarchist, we were talking about living without regrets. When people say they live their life without regrets, they tend to mean that they stand by the decisions they made in their life, be them good or bad, because even bad decisions can be learning experiences. However, the living without regrets that we were referring to, is all of the times in our lives we have passed on an opportunity or not followed a dream for trivial reasons. They can be life decisions or just fun times we passed up with friends. Whether it be regretting not going to that concert with your buddy, or not having the opportunity to say "bye" to someone before it was too late, or not marrying Christie Turlington, there are several decisions in all of our lives we wish we could change or get that opportunity back.
Still unemployed, I have recently reevaluated my life and my career path. My latest career path started when I was volunteering while helping out my hometown during the floods along the Mississippi River. I loved working side by side with people to sandbag in an effort to save their house, business, church, or just the town in general. I later managed to get into the disaster business and found that in the disaster business, you don't really get to help those individuals anymore. I got more and more immersed in my job, working longer and weirder hours, seeing the people I wanted to help less and less. I got to teach disaster preparedness to people, which I loved, but my job was asking me to take a more supervisory role on that as well and have volunteers do that. When you work a job you love and you work long hours, the years go by, the job changes, and before you know it, the job you once loved, is no longer the same job, and you just love it out of habit. It dawned on me recently, that is what happened to me.
After the things that have happened in my life lately, I have analyzed what I enjoy. When you are faced with life altering events, you realize a job can be something you love doing and are willing to sacrifice for, something you hate doing, but it pays so much it gives you the opportunity to spend that money on your family enriching your life that way, for a lucky few like musicians and porn stars it could be a job that you both love and pays a lot, or it can be a job you hate, doesn't pay that well, and isn't rewarding. After talking with my wife, we both agreed that in this stage of our lives, I should look for either a job I really, really enjoy, a job that I maybe don't enjoy and doesn't pay much but allows me a lot of time with my family, or a job that pays ridiculous money that when I do get sometime off I can afford to jet off to Walt Disney World or buy expensive guitars (she says spend the money on the family, but that's not how I processed it in my mind). Just like we talked in my group, live in the moment, make sure your job is worth it to you, either monetarily or sense of accomplishment.
But we weren't just talking about jobs in my group. We were talking about everything in life, meeting that friend for lunch, dropping an e-mail to a sick friend, taking that trip, learning that skill you have always wanted, whatever. I wish I could live a week in Cinderella's Castle at Walt Disney World, get right out of bed walk straight to the Jungle Cruise and shoot an elephant in my PJs (how he got in my pajamas I'll never know...ya gotta love Groucho!). That is a trip that would probably bankrupt me and put a huge financial strain on my family for many years to come. That is not the type of thing we were talking about. However, for years my wife and I have dreamed of taking a trip out west, just driving and seeing the sights this country has to offer. That trip, I have no doubt we will take in the coming years when we are physically and financially able to go. For years, I have begged my parents to come to Florida with us. We went as a family one time and had a great experience. That was sixteen years ago. My wife and I are able to visit Florida frequently on a fairly cheap budget. I have invited my parents many times and offered many ways to help facilitate their travel down there. Time after time we are turned down and have basically heard from them that they will never travel that far again. It is something that really saddens me, especially since my cancer diagnosis. We don't know when God may call any of us back home. We don't know how much time we have with each other. Instead of just showing my parents photos and telling them what a great time we have in Florida, we would like to take them, show them, experience it with them (until they get tired and grumpy like old people tend to do, then we will lock them in a bathroom or something). I think what saddens me is not so much the repeated declines of our previous offers, but how they say they don't ever think they will make a trip like that again. I was taken to Disney Parks the first time by my family and I was kind of hoping that one day they would be there to experience it with their grandchild. Who knows, maybe they will be more adventurous by the time that opportunity rolls around, or at least senile enough that we can tell them we are taking them to Big Lots or something and Big Lots has a new one thousand mile long parking lot.
When Warren Zevon made his final appearance on David Letterman, he was well aware that he was dying from Mesothelioma. He knew it was the last time he would be on there. He knew that the breath that he drew to sing songs many people loved was being stolen more and more by the cancer filling his lungs. Warren had a great attitude and repeated many times through his dying days "Enjoy every sandwich." It may sound stupid and simple, but for anyone that has looked at a doctor waiting to hear a success rate or a chance of survivability we know exactly what he means. Do what you enjoy. Don't waste your time on things you don't enjoy. If you do have to do things you don't enjoy, make sure it's worth it in the end. Learn to love the gifts you are given in your life, the big ones and the little ones. Enjoy every sandwich. With that said, I am sore from typing and hungry for a sandwich, so it's time to get off of here.
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