There have been a few times since starting this blog where I’ve had to look back at what I’ve written and do a little reflecting. I write about what interests me, so I can be pretty passionate about what I write. I have written about politics and religion and even sports a couple of times. I am pretty diligent on checking my facts and trying to stay up to date on what is going on in the world, but mostly I write from the heart. And then, it’s LTFF. Let the f**ker fly. That’s pretty much been my motto.
The thing I write the most about is my medical condition, the daily grind of having to deal with prostate cancer and the side effects of treatments. Over the last couple of years, my cancer has been the overwhelming issue in my life. I really wish it wasn’t, and I wish that I could move on to something else, but the fact is the disease and the treatments of that disease are things that are going to follow me for the rest of my days here on planet earth. And writing about cancer makes me feel better. I think most survivors struggle with the lack of control they feel in their life, and my writing about it helps me feel just a little more in control of something that effects my life everyday. My writing also gives me a connection to other cancer survivors. I try to write about things survivors struggle with, and hopefully give a voice to their fears and frustrations. It is also my hope that the people that read my blogs who are not afflicted will get a glimpse into what it’s like to live with this disease, and give them a better understanding what it’s like to have to deal with something that not only effects you, but also your friends and your family. It wasn’t really the aim of this blog to be a teaching implement to the muggles without cancer, but it seems that is what’s happened. And I am glad that it did.
With that being said, I write this thing from a survivor’s perspective, so my feelings and passions can sometimes overwhelm things like clinical facts. I am not a doctor, and I’m certainly not going to try to be one on this blog. I have a couple of stories that illustrate the fact that I’m not a doctor, one story not funny, and one story kind of funny and a little disturbing. So here goes.
Not a doctor story #1
You’ve heard the saying, “Lies, damn lies, and statistics?” Well, that saying could be amended to “Lies, damn lies, statistics, and prostate cancer statistics.” Prostate cancer doesn’t act like other cancers. Most of the time, it is slow growing, so when you start talking about things like staging and survival rates, some of the percentages are a little different than other cancers. In my blog A Good Cancer?, I state that the survival rate for a stage one prostate cancer survivor is 100%. Now, technically that statistic is true, but that statistic doesn’t really tell the whole story. Most doctors look at survival rates as a 5 year thing. In other words, if you have cancer, get treated, and are still around 5 years later, you are looked at as cancer free or cured of the disease. But, because prostate cancer is a slow growing disease, you could be 5 years “cancer free” with nothing showing up and your PSA staying at zero, and then for whatever reason your PSA starts climbing again and you are looking at further treatments. I had a reader point out that his doctor told him that even though his cancer was contained in his prostate that he had removed, he still had probably a 20% chance of recurrence. Unfortunately for him, it did recur.
It wasn’t my intention to make it seem like if you are a stage one cancer survivor you have nothing to worry about. His docs 20% recurrence rate sounds about right. Because even though the 5 year survivor rate for stage one prostate cancer is close to 100%, we know that 5 years is nothing to prostate cancer. Sometimes, in 5 years, it’s just getting started.
Not a doctor story #2
Over the last 7 years since I was first diagnosed, there have been advancements not just in the treatment of cancer, but also on how tests are done and how the results are recorded. One of the newer tools available to survivors is something called the “patient portal”. It allows patients to see test results much quicker than before, and in my case sends the results to me that I can see through an app on my phone. I had a PSA blood test on a Monday afternoon, and by 6 a.m. Tuesday morning I had the results. And as most survivors will attest, less waiting means less stress. Normally I wouldn’t know my results until my appointment on Thursday, but because of the patient portal, I already knew what the results were, which allowed me to formulate some questions for my doc and helped us set up a strategy.
Where the patient portal can be a bit of a problem is when you get test results back, and it has all kinds of “doctor” words in it that can leave you confused and a bit panicky. When I was sent the results of my latest CT scan, the word “metastasis” was all over it. I’m not the smartest guy in the world, and I’m not a doctor, but I know that word is not a good one to have in any test result. It also told me where the metastasis were located, and my lack of knowledge on biological terms got me in a bit of a misunderstanding. One of the areas where I had two metastasis was something called a “peritoneal metastasis.” I have a couple of tumors in my abdomen area. Unfortunately, I read “peritoneal” and thought “perineum” and started to freak out.
Friends, I need to explain something to you. Cancer is a very biological disease, and biology ain’t always pretty. Prostate cancer and the effects of the disease are VERY biological. Sometimes just describing to people where the disease occurred can be kind of embarrassing. So when I read “peritoneal” and thought “perineum” (google the words to see the difference) I immediately thought to myself,”Oh great, now I have to tell people I have some sort of “taint” cancer.” (If you google “taint”, and you are at work, don’t click on the link. There’s a few drawings in there that are definitely NSFW.)
Luckily for me I have a good friend who is a human anatomy professor at a nearby university, and he looked at my results and patiently explained to me that,”No, Dan, you don’t have taint cancer, you have some tumors near the lining of your abdomen.” Whew. Which, once again reaffirms that I am not a doctor, and I should probably just stick to the stuff I know and leave the medical stuff to the professionals.
So, when you read my blogs, please remember that I am writing them as a cancer survivor, not a cancer doctor. And, if there is something you disagree with or don’t understand, feel free to comment in the comments section, or shoot me an email. I appreciate that people have a lot of knowledge on this subject that I can certainly learn from.
Taint that the truth. Ugh. Sorry.
Thanks for reading.