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.
Tuesday, June 16, 2015
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.
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