I have lurked here for YEARS. I would put in the occasional comment to some diary but I always felt that I couldn't contribute a diary that was worth posting, so I didn't. I hung out here for several years prior to joining the site in 2006. Here is my first diary. Be gentle. Sorry if it is way too long.
I am 42 years old. I have never smoked, I eat healthy, exercise on a regular basis, have run 1/2 marathons. I eat salad on a regular basis and have eaten high-fiber cereal for breakfast almost every day for the past 15 years. I KNEW I should have just been eating Fruity Pebbles all these years. I have been married for 17 years and have a 14 year old, an 8 year old and a 5 year old. They are pretty awesome.
10 weeks ago I was diagnosed with stage 4 colon cancer. It has metastasized in my liver and lungs. As an added bonus my doctors have indicated I have a completely separate, unrelated, unexpainable kidney cancer. How they know they are unrelated, I can't say. But they are pretty damn good at what they do. If you don't mind, I would like to tell my story. I started with symptoms about a year ago. Just the usual things like blood in my stool now and then, some internal and back pain that could have just been muscle pain, etc. I would have the symptoms for a week or two, then they would go away. I am a guy, so when the symptoms went away after a few weeks, I would go back to ignoring them. In July, I had a scheduled physical where I mentioned a few things to my doctor, including my bleeding, a spot on my forehead, and some other things. We focused on the spot on my forehead, which turned out to be Basal Cell cancer, which many doctors will tell you isn't really cancer. But we focused on that because as my doctor said "you are 42 years old, have no history of cancer in your family, you are young, healthy and strong. You are SO unlikely to have cancer."
In November my wife had a not-uncommon surgery that went bad and she spent 5 days in the ICU. My symptoms returned with a vengence. Bleeding, bad pain, etc. I actually thought it might be kidney disease. So after we got my wife squared away and healthy I decided we really needed to address this so I went back to my doctor. We agreed, let's do a colonoscopy and rule that out. Basically I was diagnosed on April 4th with colon cancer. At the time they thought it was localized in my colon. A week later I met with a medical oncologit from Dana Farber who gave me 90 minutes of bad news. The same day I also met with a surgical oncologist who gave me 90 minutes of bad news, followed by 6 minutes of good news. That 6 minutes prevented me from being suicidal.
The next day we did a CT scan. Less than 45 minutes after leaving from my CT scan my doctor was on the phone telling me that every thing they hoped to not see they were seeing, and it had moved to my liver and lungs. A PET scan the following day revealed a massive tumor on the kidney opposite my liver, although my doctor waited a week to tell me this because he could tell I was already in a pretty fragile state. A liver biopsy confirmed cancer. There was no need to biopsy the lungs. I have in my life often felt like a bit of an underachiever. The typical 'unrealized potential' - an above average intelligence, undergraduate and masters degrees, good but not awesome income. Well, turns out that as far as cancer patients go, I ROCK!! Seriously, that is cancer in 4 major organs!! Talk about an achievement.
So fast forward to today. I have been through 4 rounds of chemo over the past 2 months. My body has handled it shockingly well. I do not get the debilitating nausea, for which I am thankful. I do get some neuropathy but not bad. Mostly I have a hyper-sensitivity to cold, where if I drink something cold it feels like I am swallowing shards of glass. It is unfortunate, but we have not had a Boston heat wave yet so it is all relatively manageable, and I have managed. My treatment team at Dana Farber are amazing and some of the most compassionate people I have met in my life. I look good. I feel good. People would never guess that I have cancer. Hell, I shouldn't HAVE cancer. I am still working somewhere around 10-12 hours a day. So why am I posting on KOS?
This week I had a new CT scan, PET scan and MRI. I meet with my doctor on Friday. At that pint we will go over the next phase of treatment. I already know what will be suggested, as it was the plan once we switched from a localized focus on my colon to a global focus on colon/liver/lungs/kidney. He will want to do colon surgery. He will want to remove about 60% of my liver (12 of 14 liver tumors are on one lobe). He will want to remove my kidney. I am having a REALLY hard time getting my head around the idea of surgery of this magnitude and I am not sure why. Is it because my wife laying in ICU is too fresh in my mind? Because we went from 0 to 150 m.p.h overnight with my treatment and I am trying to regain some control? Is it just because I am scared shitless and should admit it? I don't know.
I do know this. I have a few people I genuinely do not like, but I would not wish this on them. But I also think it a shame that 99% of people out there will never feel the love and support I have felt in the last 2 months. It has come from everywhere. It is truly overwhelming and humbling.
I am not particularly religeous, but I think I have about 2 million people praying for me currently, so if you are inclined please feel free to add me into your thoughts and prayers. I am not looking for monetary contributions, although my work situation and finances have me as scared as the cancer does. However, if you buy IT, like storage hardware and software, data protection, things like that, it would be great if we could talk. I will accept areas of potential business, versus handouts. We have been asked about having a fundraiser, but my wife says it is inappropriate to have a fundraiser for yourself. But if I can earn your business I would love the chance.
I think mostly I am looking for somewhere to put my thoughts and concerns. Maybe get some feedback. I am young and healthy. Do I jump into surgery with full confidence? I am sure people on here are existing without a kidney, with 1/2 a liver waiting for it to regenerate. I am sure people here have dealt with way worse than what I am dealing with. I am just looking for some feedback, and while I have never written a diary, and I am far from any type of decent contributer to this community, it still feels like MY community, and a place I can ask these things.
Any feedback would be extremely welcome. As I said, this is my first diary, so if I didn't do things right, I am sorry. I will blame the chemo-brain. It is my only excuse and I am running with it.
Thank you for your time. Harry.
Thu Jun 14, 2012 at 6:51 AM PT: I am overwhelmed. Not because this has been on the rec list since last night, but because so many people in this community, none who know me personally, are spending time to read, and to write thoughtful, thorough replies full of insight, information, experiences. I would love to respond to everyone, but my job really cuts into my day! I will respond to as many as I can though. Thank you again to everyone. YOU should all realize just how awesome you all are.
Fri Jun 15, 2012 at 7:45 PM PT: Friday Update!!! Good News!! So my wife and I met with my oncologist today. The man is ALWAYS on time. Today he was 30 minutes late. He did the usual exam, poking here, pushing there, make me take deep breaths, etc. Another 15 minutes. So 45 minutes of anxious waiting and he says...
Well, you have had a remarkable response to the chemo. We could not have anticipated results this good. We are beyond happy. The tumor in my colon has shrunk by about 2/3. The 14 spots on my liver are NO LONGER detectable on the PET scan. The spots on my lungs are still there, which makes him think they are not cancerous!
My kidney cancer may have grown a bit, but that is not unexpected, because the chemo I was on was not targetting the kidney at all.
So we will do another round of chemo on Monday, then I will meet with the surgical oncologist when he returns from vacation. I am still looking at colon surgery and kidney removal, likely the week of July 11. 5-10 days in the hospital, a month of recovery, and they still want to do liver surgery at this point. The doctor is still saying that we are getting and removing ALL of the cancer and we can only achieve that via surgery.
But it seems like that surgery may be less daunting now than it looked 10 weeks ago!
Several people had indicated they wanted an update. I can FEEL the positive energy and love from this crazy community. I made my wife read all your comments. I think she is starting to get the whole KOS thing.
Thank you to ALL of you who offered warm words, support and prayers. I still have a VERY long road ahead of me, but it at least looks like some of the BIG potholes have been filled in, and those that are left are less likely to swallow me whole.
Thank you again. Harry