I Have Cancer

[Mister Sin]

whoa—what a title, right?

Well, I recently joined a support group in search of advice and peace of mind. One of the things they preach is to not hold it in. And to kind of get your story out...so below, I will attempt to get mine out to you all.

This is very much a trial run. It’s as close to a group of people I know while still remaining anonymous. You see, I’m a very private person. I do not seek attention for good things I do, let alone for things such as this, so I want to preface this by saying, DO NOT FEEL OBLIGATED TO PUT A PITY POST! That is my biggest fear. I do not want to make anyone feel uncomfortable. And I do not want anyone’s “poor you” shit. I can certainly appreciate concern for someone. But, like I said, attention does make me slightly uncomfortable, but I need to get this out there if I’m going to tell more people in my personal life.

There are currently two people on this board that know my condition. I’ve done a shitty job of keeping them up to date.

Ugh....

So, since about 4th quarter of 2017 I began to notice a lack of energy. Not so much like an “I don’t wanna do that” but more of...after I do something just mildly physical for 20 minutes, I felt like I was absolutely spent. I thought at first it was because I am a bigger guy and I was now into my 30’s...but as time went on, it seemed more consistent. In February of 2018 I was hospitalized with a perforated colon, while there, one doctor came into the room and asked my wife if I had any form of blood cancer. She stated no...the doctor seemed slightly confused but then stated, more than likely the colon being perforated was throwing off my CBC.

By summer time, I found myself rarely leaving my desk at work. I simply couldn’t do much. My legs would feel like jell-o. Almost like if/when you ever do the “tip toe bang” with the wife when she’s just a little higher than ideal...and after, you’re legs are hell. Well, that is how my legs would feel after just a short time of walking. In July, I decided it was time to see the doctor.

After a blood test, he had a hunch, but wouldn’t get too in depth until he ran further test. On August 3rd 2019, I was Diagnosed with Polycythemia Vera. It’s a slow growing cancer in the Bone Marrow. Basically, my bone marrow makes too many red blood cells.

This cancer is much better than so many other people get. I cannot complain. I was in total shock when the doctor came in and was so serious. Not typical for him. And said “we need to have a talk” my stomach sank, he didn’t need to say another word. Outside of telling me what kind, I knew what was about to be said.

This type of cancer is most commonly found in people over the age of 60. But I was one of the lucky ones who get it early in life. They typical life span is 5-10 years, but there are people that live 20. I think it’s a matter of overall body health outside of the cancer. Being a big guy already, I feel like if I’m being a realist, which I truly try to be, that I’ll most likely get the 5-10 zone.

To be honest, I’m used to the idea of it all now. It’s just part of me. But I still get scared and depressed to think that there is a very real chance that I may not see my kids graduate high school or get married....see my rams win a fucking Super Bowl! Lol

Besides those struggles, it’s a matter of just feeling like total dog shit. I was reading yesterday and someone put it so well, imagine wearing a 200lb suit. And living life with that on, and when you think you’re used to it, they add more weight. A large amount of people can live a normal life for quite some time with treatments such a phlebotomy and meds. But the pain and different symptoms don’t go away.

That is all, this is my story. Sorry if I made anyone uncomfortable. If you were, I hope you clicked the “back” button long ago. But I was successfully able to type this out. And here is to hoping that I will be able speak more going forward. Again, do not feel any obligation to reply. Most of you don’t know me. I don’t post nearly as often anymore. If you do. I would almost prefer a pm. Talk to y’all later!

 

[Akrasian]

whoa—what a title, right?

Well, I recently joined a support group in search of advice and peace of mind. One of the things they preach is to not hold it in. And to kind of get your story out...so below, I will attempt to get mine out to you all.

This is very much a trial run. It’s as close to a group of people I know while still remaining anonymous. You see, I’m a very private person. I do not seek attention for good things I do, let alone for things such as this, so I want to preface this by saying, DO NOT FEEL OBLIGATED TO PUT A PITY POST! That is my biggest fear. I do not want to make anyone feel uncomfortable. And I do not want anyone’s “poor you” crap. I can certainly appreciate concern for someone. But, like I said, attention does make me slightly uncomfortable, but I need to get this out there if I’m going to tell more people in my personal life.

There are currently two people on this board that know my condition. I’ve done a crappy job of keeping them up to date.

Ugh....

So, since about 4th quarter of 2017 I began to notice a lack of energy. Not so much like an “I don’t wanna do that” but more of...after I do something just mildly physical for 20 minutes, I felt like I was absolutely spent. I thought at first it was because I am a bigger guy and I was now into my 30’s...but as time went on, it seemed more consistent. In February of 2018 I was hospitalized with a perforated colon, while there, one doctor came into the room and asked my wife if I had any form of blood cancer. She stated no...the doctor seemed slightly confused but then stated, more than likely the colon being perforated was throwing off my CBC.

By summer time, I found myself rarely leaving my desk at work. I simply couldn’t do much. My legs would feel like jell-o. Almost like if/when you ever do the “tip toe bang” with the wife when she’s just a little higher than ideal...and after, you’re legs are hell. Well, that is how my legs would feel after just a short time of walking. In July, I decided it was time to see the doctor.

After a blood test, he had a hunch, but wouldn’t get too in depth until he ran further test. On August 3rd 2019, I was Diagnosed with Polycythemia Vera. It’s a slow growing cancer in the Bone Marrow. Basically, my bone marrow makes too many red blood cells.

This cancer is much better than so many other people get. I cannot complain. I was in total shock when the doctor came in and was so serious. Not typical for him. And said “we need to have a talk” my stomach sank, he didn’t need to say another word. Outside of telling me what kind, I knew what was about to be said.

This type of cancer is most commonly found in people over the age of 60. But I was one of the lucky ones who get it early in life. They typical life span is 5-10 years, but there are people that live 20. I think it’s a matter of overall body health outside of the cancer. Being a big guy already, I feel like if I’m being a realist, which I truly try to be, that I’ll most likely get the 5-10 zone.

To be honest, I’m used to the idea of it all now. It’s just part of me. But I still get scared and depressed to think that there is a very real chance that I may not see my kids graduate high school or get married....see my rams win a freaking Super Bowl! Lol

Besides those struggles, it’s a matter of just feeling like total dog crap. I was reading yesterday and someone put it so well, imagine wearing a 200lb suit. And living life with that on, and when you think you’re used to it, they add more weight. A large amount of people can live a normal life for quite some time with treatments such a phlebotomy and meds. But the pain and different symptoms don’t go away.

That is all, this is my story. Sorry if I made anyone uncomfortable. If you were, I hope you clicked the “back” button long ago. But I was successfully able to type this out. And here is to hoping that I will be able speak more going forward. Again, do not feel any obligation to reply. Most of you don’t know me. I don’t post nearly as often anymore. If you do. I would almost prefer a pm. Talk to y’all later!

Just keep fighting it. Treatments improve all the time. And kids grow up faster than you expect. You'll get to see them mature, and with just a little luck, much more.

You did right to reveal it - for a long time I didn't talk about my wife's illness (and death) but support helps. If there is anything I can do, please let me know.

 

[Mister Sin]

They have come a LONG way in the last 10 years. Seems to be confident that a cure will be happening in my natural lifetime...when I’m told that, I never know if that means like what I would have lived or like within the next 10 lol.
Thank you.

 

[Riverumbbq]

I'm sorry to hear about your ordeal and hope to read soon that advances in medicine have given you a clean & complete bill of health. I'm sure this is tough on the whole family. Admittedly, I don't know much about this disease you are fighting, but would a bone marrow transplant be of help in your case ? You are young, so like Akrasian stated, keep on fighting this as many improvements in treatment come rapidly.

Get Well Soon,
River

 

[Mister Sin]

I'm sorry to hear about your ordeal and hope to read soon that advances in medicine have given you a clean & complete bill of health. I'm sure this is tough on the whole family. Admittedly, I don't know much about this disease you are fighting, but would a bone marrow transplant be of help in your case ? You are young, so like Akrasian stated, keep on fighting this as many improvements in treatment come rapidly.

Get Well Soon,
River

Unfortunately, no, it’s a genetic mutation that causes the cancer...it’s really on cancer in that it’s the rapid reproduction of cells. But a bone marrow transplant will not do anything. The only real treatment is to drain the blood to acceptable levels. Blood thinners are a must to help avoid blood clots. I actually had to have surgery in October to get 3 clusters of clots removed.

 

[Riverumbbq]

I was just googling some of the symptoms associated with Polycythemia Vera, and other than the medications & bloodletting (kind of medieval sounding), it sounds like daily exercise with walking and stretching should be part of the regimen. Hopefully your work environment is conducive to your needs and they provide you with excellent medical benefits.

 

[HX76]

I'm really sorry to read this, I had a drink after work tonight (tomorrow is a bank holiday here) and I met up with a guy I used to work with. He told me his dad passed away yesterday through cancer. His sister turned up a bit later and you could see they were heartbroken, it was horrible to see. The whole thing just seems unfair, but you obviously have a beautiful young family who you must stay strong for as much as they must be hard.

I think it's pretty brave of you to put this on here by the way and hopefully I haven't come across too sympathetic as that's what you didn't want! Keep strong and try and concentrate on all the good things in your life.

 

[Mister Sin]

I was just googling some of the symptoms associated with Polycythemia Vera, and other than the medications & bloodletting (kind of medieval sounding), it sounds like daily exercise with walking and stretching should be part of the regimen. Hopefully your work environment is conducive to your needs and they provide you with excellent medical benefits.

I would assume that that would absolutely help things. Exercise is completely dependent on the side effects. For me, I could do something for a very short amount of time. But I would be for the rest of the day basically.

 

[Mister Sin]

I read on the group thing that some folks have to take cold showers because the hot water messes with their skin and they gets such a bad itch that they will scratch themselves raw and full of sores.

 

[IowaRam]

Sorry Dude

so what is your treatment ,I'm guessing it's not the same as leukemia

 

[Mister Sin]

Sorry Dude

so what is your treatment ,I'm guess it's not the same as leukemia

It’s not. As of right now, nothing. Once my blood levels get to a certain point I will have to get drained(phlebotomy) or blood letting.

The biggest and scariest issue is, depending where you find your stats, 20-30% of people with this, have it turn into Leukemia.

They use CBC test to determine a lot of trends with the body. And in those they use markers that they correlate with PV and Leukemia and other things that tell doctors to do further testing.

Well, my last test, I had 4 markers that had risen to the very top of the what is considered allowed before being in the “danger zone” for leukemia markers. It really made me nervous. I recently changed jobs, less than a month ago because I simply couldn’t perform at my last one anymore, so now I have to wait 3 more months to go back. That wait time is gonna kill me...not knowing. I mean, I don’t feel any different outside of my legs. My legs hurt so fucking bad. Even as I type this...my legs are absolutely killing me.

 

[IowaRam]

Is this something you can monitor at home , or something you have to go to a hospital for

guess what I'm asking is it some that fluxuates . how do you know when it gets to that certain point

 

[Mister Sin]

Is this something you can monitor at home , or something you have to go to a hospital for

guess what I'm asking is it some that fluxuates . how do you know when it gets to that certain point

I can’t monitor it at home. You have to see a hematologist oncologist. They look at the levels of RBC and Hemocrit and then set you up for draws every 3 months. It’s slow growing. So changes don’t typically happen very suddenly. Eventually, you will go monthly, every other week and then weekly.

 

[Mister Sin]

I’ve read that phlebotomy is only viable for 5 years. But I’m not sure. I hope to never really need it. People I’ve talked to say that is when you really start to go down hill.

 

[Elmgrovegnome]

Stay positive Juggs. I’m sure it’s difficult to do, but it’s best for you and your family.

In 2011, my hands were going numb. Sometimes my whole arm or foot would also. Neurologist and Neurosurgeons took one look at my MRI and suddenly everything became urgent. My top two vertebrae were decomposed into a pyramid shape. They fused together too. My skull was settling onto my spine, which was pushing against my brain stem. We have a very good hospital with a good Neuro dept. but they had never seen anything like it. They had a conference with all the best Neurosurgeons that they could get to give input. The room was SRO, I was told, plus docs on teleconference. I thought I was screwed. If I didn’t have a family I may have just offed myself. The young surgeon, who was regarded as the best, told me that the top two vertebrae were so badly deteriorated that there was no way they would hold screws, and that I would spend the rest of my life in a chair. I had an active four year old son and a daughter on the way. I felt sick and depressed. It took 13 hours of surgery to install rods that went from C4 to C1 and then bent at a right angle and raised my skull up. It hurt bad for months, I was doped up a lot. I also sat around for most of a year. I have always been a very physical person. I skied, hunted, fished, biked, etc,...

It took about a year and a half to fully heal but I couldn’t just sit around. I did what I could afterwards, which wasn’t much. I had lots of headaches for the next four years, and it prevented me from working full time. I saw the surgeon about five years later, after having an MRI, to see what was causing the headaches. He was elated when he saw the MRI and said that it all healed in beautifully. He said it’s very stable and I can run and go back to doing most of what I could before. The headaches were unsolved but otherwise I’m not worrying about every move I make now.

So, my point is that it’s natural to worry, and I did. I tried to keep it from my kids. I’m sure it was a difficult transition for them, but I tried to stay positive around them. In the end I worried and caused myself a lot of stress that was unnecessary. It all worked it, despite being a long rough road.

 

[Mister Sin]

Stay positive Juggs. I’m sure it’s difficult to do, but it’s best for you and your family.

In 2011, my hands were going numb. Sometimes my whole arm or foot would also. Neurologist and Neurosurgeons took one look at my MRI and suddenly everything became urgent. My top two vertebrae were decomposed into a pyramid shape. They fused together too. My skull was settling onto my spine, which was pushing against my brain stem. We have a very good hospital with a good Neuro dept. but they had never seen anything like it. They had a conference with all the best Neurosurgeons that they could get to give input. The room was SRO, I was told, plus docs on teleconference. I thought I was screwed. If I didn’t have a family I may have just offed myself. The young surgeon, who was regarded as the best, told me that the top two vertebrae were so badly deteriorated that there was no way they would hold screws, and that I would spend the rest of my life in a chair. I had an active four year old son and a daughter on the way. I felt sick and depressed. It took 13 hours of surgery to install rods that went from C4 to C1 and then bent at a right angle and raised my skull up. It hurt bad for months, I was doped up a lot. I also sat around for most of a year. I have always been a very physical person. I skied, hunted, fished, biked, etc,...

It took about a year and a half to fully heal but I couldn’t just sit around. I did what I could afterwards, which wasn’t much. I had lots of headaches for the next four years, and it prevented me from working full time. I saw the surgeon about five years later, after having an MRI, to see what was causing the headaches. He was elated when he saw the MRI and said that it all healed in beautifully. He said it’s very stable and I can run and go back to doing most of what I could before. The headaches were unsolved but otherwise I’m not worrying about every move I make now.

So, my point is that it’s natural to worry, and I did. I tried to keep it from my kids. I’m sure it was a difficult transition for them, but I tried to stay positive around them. In the end I worried and caused myself a lot of stress that was unnecessary. It all worked it, despite being a long rough road.

That sounds shitty and very dangerous. Glad to hear you were able to pull through that!

 

[Angry Ram]

Wait I'm confused...is this treatable or not? How can you feel lucky if the top span is 20 years?

 

[Mister Sin]

Wait I'm confused...is this treatable or not? How can you feel lucky if the top span is 20 years?

It is treatable, it is not curable. The treatments expand the lifeline. I feel lucky because when a lot of people get that talk, the outlook is months. When Rich got sick, he only told a few of us here. We were in a private message together. He lasted months. Not years. He thought he was cured, or had at least made it thru it, but it came and took him. I know I won’t escape. I know the end game here. I guess there is peace in knowing, and I feel lucky because I should have plenty of years to still spend time the way I want. It’s hard to explain.

 

[A55VA6]

Damn, sorry to hear about this man! I'm not really educated on this stuff so I don't want to say much, but I hope whatever treatment you get helps with how you're feeling on a daily basis. And hopefully, you still have many many years ahead of you.

 

[CGI_Ram]

I’ve been trying to figure out how to chime in...

It is quite awesome/brave of you to share these struggles, because we all have things we’re wrestling with. This happens to be on the most difficult end of the spectrum and my heart goes out to you, Juggs.

I am sure you already have a heightened appreciation for things... Some people miss out on those observations, thinking they’ll live forever. It’s not a worthwhile trade off, I get that, but in a weird way you have a leg up on that life lesson. There might be something there to be grateful for.