Pain in Nick's A**: Colorectal Cancer Screening

I think it's time to get on my soap box. Well maybe not a soap box...how about empty colonoscopy prep bottles.

About a month ago the FDA a approved the Cologuard a non-invasive colorectal cancer screening test. Sweet right? No more scopes where the sun doesn't shine. I mean let's check out what the media had to say about the Cologuard test.

"Instead of a colonoscopy, which often scares people due to the prep work and the invasive procedure, a stool sample would be checked for the presence of red blood cells and DNA mutations."

http://www.kare11.com/story/news/health/2014/08/11/fda-approves-alternative-to-colonoscopy/13932001/

I'm scared no colonoscopy for me...woohooo!!

"A new alternative for one of the most dreaded medical procedures is about to hit the market. Cologuard is the first ever non-invasive colorectal cancer test that can be taken under the privacy of your own home."

http://www.wkow.com/story/26261424/2014/08/12/fda-approves-local-companys-non-invasive-test-for-colon-cancer

An alternative I can do at home...sign me up.

"Alberto Gutierrez, Director of the Office of In Vitro Diagnostics and Radiological Health at FDA’s Center for Devices and Radiological Health, said, “Cologuard gives patients and physicians a better alternative to the painful session of colonoscopy in detecting colon cancer.”"

http://www.wallstreetotc.com/fda-approves-cologuard-test-giving-90-accurate-results-colon-cancer/27097/

Even the FDA guy says it's a better alternative.

"Those who would rather avoid having a colonoscopy now have the option of Cologuard, a noninvasive test that detects the presence of red blood cells and DNA mutations that may indicate the presence of certain kinds of abnormal growths."

http://www.cleveland.com/healthfit/index.ssf/2014/08/cwru_uh_researchers_discovery_behind_first_approved_stool_dna_colorectal_cancer_screening_test.html

I want to avoid cameras where the sun doesn't shine.

"In March, Mayo Clinic announced results of a large clinical trial showing Cologuard was about as effective as a colonoscopy in detecting problems."

http://www.twincities.com/localnews/ci_26317777/mayo-backed-colon-screening-test-gets-fda-approval

About as effective...that's all I need.

"Accurate colon cancer screening has usually involved a colonoscopy, an invasive and unpleasant procedure many chose to avoid. But on Monday, the Food and Drug Administration approved the first and only non-invasive stool DNA colorectal cancer screening test from Exact Sciences Corp. (NASDAQ: EXAS)."

http://247wallst.com/investing/2014/08/12/exact-sciences-colon-cancer-screen-fda-approval-a-total-game-changer/

It's accurate see they said so, why would I not want to avoid an unpleasant procedure?

Well let me be the first one to break it to you. If you do the cologuard test rather than a colonoscopy you ARE increasing the chance that you'll end up with colon cancer. Period! Now why did I not read that in any of the articles? Are you telling me the media of this nation didn't do their homework? Say it aint' so? I guess you really can't blame the media, I mean it is much easier re-printing press releases than being actual journalists.

Look there may be a place for the Cologuard in the colorectal cancer screening tool box. But, it doesn't replace the colonscopy in the tool box. I'm sorry everyone. It just doesn't.

So, you're probably asking yourself, "I wonder why?" First let's talk about how Cologuard works. Basically you poop in a jar and send it to a lab. That lab then looks through the poop for DNA and blood. The idea is that tumors and even some precancerous polyps slough off both blood and tissue (that contains DNA) into poop as it travels through the colon. The trick? The Cologuard guys have found a way to find it in quantities lower than ever before, so the test is more sensitive to the older fecal based tests.

So, since I'm a numbers guy, let get into that. This paper (http://www.nejm.org/doi/full/10.1056/NEJMoa1311194) was published in the New England Journal of Medicine and it has all of the goods. Let's get down to the bottom line. The Cologuard test has a 92% sensitivity in detecting stage I-IV colon cancers. Well that's pretty damn good, isn't it? I mean nothing is 100%. Yeah 92% is a solid number. So why do I make the comment, "If you do the cologuard test rather than a colonoscopy you ARE increasing the chance that you'll end up with colon cancer. Period!" Well it's pretty simple. While Cologuard is decent at finding cancer, it's mediocre at finding precancerous polyps. Cologuard only found 42% of precancerous lesions found by a colonoscopy. Let me tell you, if you have a choice finding colon cancer before it becomes cancer you should chose that. If they find something and it's cancer, if you're lucky it's just some cutting and sewing. If you're moderately lucky maybe some chemo and radiation. If you're luck is piss poor then it could be something you deal with for the rest of your life. As a guy that's had colon cancer and a polyp removed a few months ago, the treatment for the polyp is infinitely easier than the treatment for cancer.

I feel confident speaking for Colon cancer patients around the world in saying, "Suck it up and get your colonoscopy." Colon cancer is one of the few cancers that can be screened for and prevented given a timely colonoscopy. So, just go do it, they really aren't that bad.

P.S. Shame on the FDA guy for that quote. "Better alternative"? By what metric? Not at finding cancer or polyps, which is the point right?

Pain in Nick's A**: Annual CT Scan

Two weeks ago I went to Redwood City to Stanford's Outpatient Medical Center for my (currently) annual scan. These scans are kind of a big deal. Us Colon Clubbers call it scanxiety, the anxiety caused by the upcoming scan/scan/waiting for the results. While I had a colonoscopy 2 months ago to look for local recurrences, local recurrences are not very likely ~10%. Recurrences in my kind of cancer are typically found by CT imaging. Colon cancer likes to travel to the liver (favorite place) and lungs (second favorite) and the best way to look at those sites is via the CT scan (with contrast).

I got there early (6:45am for a 7:30am appt. you never know about Bay Area traffic in the morning), because that's how I roll. Got signed in, changed into scrubs, and waited in the prep room. Since I was getting a IV with contrast they had to start an IV. So I'm not sure what I've done to whom, but the Stanford nurses are 0 for 2 in starting IVs in me in 2014. It's really not that big of a deal, just somewhat amusing. The nurses always feel really bad. I guess with the number of IVs I've had over the last 24 months it's inevitable to have a couple not work out.

So, once she got the IV set and tested it, I waited a couple minutes and the rad tech came and got me. Remember, early appointments mean things are typically on time. I laid down in the bed of the CT scanner, the tech tested the IV again and then plugged me into the automated contrast plunger. I told the tech to check the connection because I had one leak on me once upon a time, so he did. They do a scouting scan first, then pump the contrast in (which feels really weird, like you're peeing you pants), and then two more slower scans (abdomen/pelvis and chest). Five minutes later all done. I chatted with one of the techs who recognized me (from the clinical study I did when I was going through radiation therapy) and then I was off to work.

In the April my Oncologist decided to leave Stanford, which was a little sad because him and I got on so well. But, I'm not on active treatment,so it really isn't that big of a deal. With that said, after my last scan he called me the evening of and told me the results. This time around I don't theoretically have an Oncologist. My last followup was with his Nurse Practitioner, who is super nice, but seemed hesitant to want to call me with the results (maybe MDs have more latitude in the rules than NPs). So with that in mind I decided to schedule my scan on Wednesday the 24th followed by a follow-up with the NP on Thursday the 25th. I didn't want to be waiting forever for the results. My plan was foiled about two weeks ago when the NP's office called and said they were going to have to reschedule my follow-up. Damn. I actually will not be seeing the NP until Oct 7th due to a business trip to Europe. So, I sent her a message, begged and pleaded, and she said she'd have someone call.

So, now that I've had you read four whole paragraphs you're probably wondering what the results were. Wednesday afternoon I got a call from one of the nurses. He told me everything is stable and there was nothing new to report. Good right? Yup that's what I was hoping to hear. I asked him to release the report so I could read it, he said he would as soon as the radiologist signed it. I felt a little indifferent, I mean I should be ecstatic, but I really wanted to read it myself. Wednesday evening goes by, no report. I send the nurse a quick reminder Thursday morning. Thursday evening still no report. By Thursday evening my head is going to bad places. Maybe the radiologist didn't sign something because he reviewed it again and found something or he wanted a second opinion on something that wasn't good. I spent much of Thursday evening thinking about how to go about getting a copy of the report if the Nurse doesn't release it Friday morning. I'll call the office at 9am Friday morning. Then if that doesn't work I'll call the Rad Onc's nurse (who is freaking awesome) to see if she can get me the report at 10am. I had my story all ready to go and 15 minutes before I get on the phone, I get an e-mail saying the report is released and a note from the nurse apologizing because everyone was off site on Thursday. So I finally put eyes on the report.

Reading a CT scan report is a little underwhelming. It doesn't say anywhere on there, "Congratulations you don't have cancer," so don't look for that. No doctor is going out on that limb. You look more for what it doesn't say than what it does say. 'New lesions', 'new nodules', 'new focus', 'growth', 'enlarging', etc... all those would be examples of bad things in a report. 'No new_____', 'no enlarging', 'stable', 'normal', 'patent', etc... are all things you like to see. The report was full of the later. So I'm good to go for another year. The odds are now on my side that I probably won't have to deal with this cancer again anytime soon. Wow. That sounded positive didn't it? What can I say? I'm a head case. Part of me feels if I talk to strongly about not having cancer I'll jinx the whole thing. What can I say I just don't want to tempt fate.

Pain in Nick's Ass - Where the sun don't shine II

So it’s been a year since the last peek inside my colon. Time for another. At this point I’m a prep pro, having done four bowel preps in the last two years. If anyone needs any pointers give me a holler. Cottonelle Wet Wipes (**Pointer #1**), after pooping for 2-4 hours wiping with regular TP starts to feel like wiping with sand paper. Anyways. After a successful prep I hit the sack as we had to get up pretty early to get to the appointment. Get the earliest appointment possible (**Pointer #2**). Why? Because a just like the early flight leaves on time, the early colonoscopy gets completed on time. I actually was not scheduled first. But, I got their first because I follow directions (**Pointer #3**), health care professionals love the patients that follow directions. My nurses must have liked me (oh and I may have said I followed directions and got there and hour early and the other guy didn’t. I actually got there before he did and his appointment was 30 mins before mine. I didn’t pull out the C card, but they knew I had cancer, so maybe that helped.) because they successfully lobbied the doc to look at me first. Be nice to the nurses (**Pointer #4**), they have the power to make your stay better.

So after the most uncomfortable IV placement I’ve ever had (15 IV placements in the last two years and numerous other sticks, so I’ve got some experience in this regard), I was wheeled into the endoscopy suite.

***Side note: So the nurse pokes it in and I feel her hunting around for the vein (you feel the needle wiggling around and some pain, not my first rodeo). So, after grabbing a straw and sucking it up (**Pointer #5**, don’t say a word or start wiggling when they’re placing an IV. Why? I don’t think it’s the best idea to start putting pressure on a nurse trying to stick a needle in your hand/arm), she finally gets it placed. As she tapes it up she mentions to the other nurse that she hates these new catheters. I guess they’re using new IV catheters in the endoscopy center that the nurses aren’t big fans of. At that point I tell her that I wasn’t a big fan of them either and told her that was about the worst IV stick I’ve had. She apologized and said that they should talk to the powers that be (likely some bean counter got some deal on cheap IV catheters from China or something). I told her no problem it wasn’t the worst thing that’s been done to me under this roof (you get near me with a foley catheter you’ll likely end up with a black eye).***

After the nurses took my vitals, I rolled onto my left side they pushed some Midazolam and Fentanyl into my IV. The last thing I remember is the Doc asking me if I was ok. Sleepy time. I remember waking up just as the doc was pulling the scope out, but it’s all a bit foggy. She found one 7mm sessile polyp that she cut out. All else was good. The path came back and it was an adenoma (not malignant, but cancer can form from these suckers).

Location of where the surgeon connected me back together.

Polyp that wasn't long for the world.

Now it’s somewhat strange that she found a 7mm polyp one year after she only found a 10mm polyp. Polyps aren’t supposed to grow fast with the average being around 0.5mm a year. But, there’s some data that has shown rate in excess of 2mm a year. So maybe she missed it (5-10mm polyps are missed nearly 15% of the time). Maybe it was smaller and hiding in a fold and I’m abnormal (I think most would agree this is the case), so polyps grow a bit faster in me. What does this mean? Well it means that in a year she’s going to take another trip into my large intestine. Had it been clear we probably would have pushed it to 2 years. Oh well. Colonoscopies really aren’t that bad, a lot easier than cancer.

So, it’s been a little over a year since I finished treatment and we are looking at growing our family. I’m not sure I can count the number of times total strangers ask if we plan on having another child. Honestly, it’s a common question when small talking about families with others. Should it be? For most people the question is easier, but for the few it’s not the easiest question to answer. Dude, you’re about to feel really awkward... I’m open about our situation to really anyone, so the unfortunate person that asks me the question gets to feel really awkward. “Are you and your wife thinking about having another kid,” someone asks? Dude, you’re about to feel really awkward, I think to myself. “Well, about two years ago I was diagnosed with cancer…,”I say. Then crickets. I suppose I could be cruel and leave it there, but I continue talking about it reassuring the person that they didn’t just pee in my Cheerios. Moral of the story, be careful. What seems like an innocuous question may not actually be one.

The recommendation from most authorities is to not to conceive a baby until a year post treatment. I guess the chemicals that kill cancer cells aren’t good for swimmers. I also did lot of research on my own to check into the effects of cancer treatments on baby making hardware. Unfortunately there is just about zero information on the effect colorectal cancer treatments, which isn’t surprising since it’s mostly an old person cancer. But, the research did seem to indicate that the conception process is extremely selective. I made some swimmer deposits prior to treatment in the case that something happened to my fertility, unfortunately due to the stress the cancer was placing on my body they were not the highest quality swimmers. We actually tried three rounds of inter-uterine insemination (IUI) with the best banked swimmers early this year, but nothing took. We were hoping that we could just try the old fashion way in June. When we got back from France we had my swimmers checked. “No sperms seen in pelleted sample, confirmed by IVF Lab,” read the results. Damn.

We then checked my Testosterone. The initial test found it low. So, I’m a 36 year old with low T and shooting blanks. Sweet. After some research it’s seems both Oxaliplatin and Radiation does a number on the old testes. I found one scientific paper on irradiating the testes. Turns out a single 4-6 Gy dose of radiation does a number on sperm production with a dose over 6 Gy likely causing permanent azoospermia (that’s a fun word huh? Means no measurable level of sperm). How did they find that out? “The effects of a single-dose irradiation on spermatogenesis have been documented in a population of healthy prisoners.” Oh I see medical testing on prisoners…sounds kosher. Anyways. Well that’s fine there’s no way my testes saw 4 Gy of radiation. But, reading further on turns out if one received fractionated doses much less radiation dose damage. Well my treatment was 25 fractionated doses…shit. What’s the number? Somewhere around 1.5 Gy can cause permanent azoospermia. So I got on the phone with my Rad Onc (Radiation Oncologist). I asked him what the treatment plan said my testes may have gotten shot with. Docs tend to shy away from giving detailed info about the tools they use define treatments. I think they’re worried being too detailed, rightly so, since most patients can’t handle information. I tell him that I’m just curious about the order of magnitude. Was it 1 Gy or 0.1 Gy? I tell him I know that fractionated is worse than a single dose, blah, blah, blah. He realizes I’m not a normal patient and says that plans are just that, plans, and just estimates of the dose received. I say of course and joked that if it was cold one day in the treatment room my testes would have seen more radiation than if it was warm. Ha laughed and says that the plan says my testes could have seen about 1.6 Gy. Shit. Now that doesn’t mean I’m officially sterile…but it doesn’t look good.

The last 21 months have been hard. Lindsey and I were literally going to start trying for kid #2 the weekend I was diagnosed.  Not a day goes by that both Lindsey and I don’t think about my cancer or the fact that growing our family may not be possible. Part of that is my own doing as I’m active in online colorectal cancer communities. But, I feel a duty as a survivor to share my story to try and assist others through their journey (one of the reasons I write these blog posts). When no news is good news, the only news is bad news. Many survivors disappear into their lives (I get it, why would you not want to try and forget about an awful time in one’s life) and the majority of stories being told are the poor outcomes. When no news is good news, the only news is bad news. I remember how uplifting it was to see the stories of others with similar diagnosis that were successfully beating this shitty disease. I want to be that light for others. I do feel some guilt, about feeling upset about our fertility issues. Shouldn’t I just be happy that I’m still alive? That I’m not in active treatment? That my body tolerated treatment so well? That I have a son? That I have a wife? There are so many others that follow similar journeys that are not as fortunate. It's easy to be scared into inaction, but as a well regard member of the Colon Club, Brownbagger puts it, "Live your life like it's going to be a long one, because it just might, and then you'll be glad you did."

Cartoon by www.XKCD.com that is soooo true.

So it looks like our only option may be IVF to get a brother or sister for Oliver. IVF was something that Lindsey and I said we would not do 6 months ago. After a second opinion on the quality of my deposits not being high enough quality for IUI, 3 failed IUI attempts, and what looks like (today) my sterility, we’re reconsidering. I have an important scan at the end of September, a CT scan with contrast to look for metastases locally, in my liver, and/or in my lungs. Something like 80% of recurrences occur within 18-24 months from surgery (with that said stats don’t mean anything for singular cases…so…). I’ll be at 20 months come scan time. If the scan comes out good we’ll make some decisions.

Cancer...the gift that keeps giving.

Pain in Nick's A**: 363

363 days ago my surgeon removed nearly 12 inches of colon along with the pain in my a**. With that said metaphorically it will continue to be a pain in my a**, probably forever. While, I feel great and my colon is working well, I still have some neuropathy in my hands and feet and follow-up appointments every three months. There’s always some anxiety from the follow-ups, more so with the CT scan and Colonoscopies, than the blood work, but anxiety nonetheless.  So, while my physical cancer may be gone, the mental cancer will continue. But that’s OK.

There is a bright side to the neuropathy at least. You’re all probably wondering where I’m going with this. While it does remind me of cancer, which constantly puts that in my head, it reminds me of cancer. Why is that good? Well it’s a reminder every day that I should live a healthy life. Go to the gym. Take my vitamins. Eat my veggies. I can’t count how many times I’ve gotten into bed, felt the numbness in my feet as they slid along the sheets, and remembered to take my vitamins and baby aspirin. How’s that for glass half full?

I checked in with the surgeon and my oncologist today. Everything is fine, so both appointments were pretty uneventful. They took some blood, poked at me a bit, and that’s about it. Hopefully it’s the last time I see the surgeon. Not that he wasn’t a nice guy, but if I see him again it means things aren’t good. I will continue to be followed by my oncologist every three months or so for the near future. We pushed off my next CT scan until next October. Everything has been stable and I’ve received a ton of radiation at this point, so we thought it was best to start reducing my radiation exposure. I’ll have another colonoscopy in July to go in and check for local recurrences. Local recurrences in rectal cancer treated with radiation are less than 10% so that’s not a bad number. So no more poking and prodding for another three months (let me find some wood to knock on). Sweet!

In December I decided that I should give back, so I contacted the Colon Cancer Alliance (http://ccalliance.org/) to see what I could do to help. The have a buddy program that pairs up the newly diagnosed with those who’ve gone through the whole thing. I know how helpful the stories I read during my treatment were for me, so I’d like to help others with that as well. Also just like most other things, ‘good news’ tends to be ‘no news’ with cancer as well. The problem is, is that if all the stories out there are the ‘bad news’ stories, then that’s all people see. For newly diagnosed patients I think it’s important to get both sides out there, otherwise it’s quite demoralizing only seeing the ‘bad news’. Last week I also volunteered to work at the American Society of Clinical Oncologists GI Symposium in San Francisco. I talked with various docs and other healthcare professionals about the resources that the CCA has for patients and their caregivers.

Me with Martha Raymond from the CCA

Another group that was helpful during my treatment was the Colon Club (http://www.colonclub.com/). They have a fabulous message board where patients and caregivers get together for support and information. The Colon Club has a mission statement of using out-of-the-box ways to increase the awareness of colorectal cancer. One of the ways they do that is with the Colondar (http://www.colonclub.com/about-the-colondar/). The Colondar is a yearly calendar featuring colorectal cancer surviviors younger than 50, to bring awareness that this disease can happen to anyone. So I’ve decide to put my hat in the ring for the 2015 Colondar. Wish me luck.

Pain in Nick's A**: Where the sun don't shine

So back in July I had my clearing colonoscopy. Finally the doc was able to go all the way to the Appendix and Ileocecal valve (where the small intestine joins the large intestine). I should probably be given a discount as the doc doesn’t have go to as far (since they removed about 12” of my large intestine) and the path is most likely less tortuous, but I doubt that will happen. Prior to the procedure I spoke with the Doc and told her that I remembered my last colonoscopy and I’d rather that not be the case this time. She said that must have been unpleasant…yes…yes it was. She knocked me out, took a look around, found the polyp that was seen on the virtual colonoscopy, clipped that sucker off, and sent me on my way. The polyp was determined to be a tubular adenoma with no evidence of cancer. So that’s good. In a year they’ll take another look around.

On Tuesday I had a CT to check for recurrences. There are some nodules in my lungs that the docs are keeping an eye on. They don’t think they’re cancer as they have been stable on all of the previous scans. Well this scan was no different. The nodules continue to be stable. They are the exact same size as the day they found them nearly a year ago. Seeing I went through some nasty chemo and they didn’t get smaller, most assuredly they are not cancer. No doc will give you a 100% guarantee, but I'll take a 'most likely not' at this point. So the scan came back clear.

So as of today I’m considered NED (No Evidence or Disease). They typically don’t start throwing around the ‘cured’ title for colon cancer until you’re out about 5 years without a recurrence. So surveillance mode it is. I’ve got another follow-up in 3 months for blood and a check-up, another CT scan in 6 months, and another colonoscopy next July.

In the meantime I feel great. So getting back to living a normal life is in order and hopefully the last year will just become a bad memory.

Pain in Nick's A**: Chemo...DONE!

So here I am...I take my last Chemo pills in the morning. DONE...Freaking DONE. Oh how glad I am to not have to feel crappy again next week.

Last Chemo Drip Treatment

During my last drip the Stanford Infusion Center staff sang me a little song.

So what are the next steps? Well on the 18th of July I get the pleasure of finally having a full colonoscopy, since they've been unable to get a good look past the first few inches. So that will be fun. After that I'll have a CT scan sometime in the fall just to keep an eye on everything.

As of now I look forward to recovering from the Chemo (little neuropathy in the feet), then hopefully this can all go in the history books as a bad nightmare.

Pain in Nick's A**: Senseless Violence

Right now by the thousands, my cells are being massacred. Destroyed by this nasty cocktail of drugs I'm taking and hopefully for absolutely no reason at all. One might wonder why I say that. Don't I want the drugs to be killing the cancer? Well yes, killing cancer is a good thing, I'm all for it. As a matter of fact I'm one of the biggest fans of dead cancer. But, my best shot of a long healthy life is that all of the cancer was removed by the surgery. Unfortunately there's no way of knowing if the surgeon got it all. So that's where the Chemo comes in, to mop things up. Chemo is good at prolonging life, which is a good thing. Unfortunately it is piss poor at 'curing' cancer, at least colon cancer. So here's for hoping there's some serious senseless violence going on.

I'm about 66% through treatment now, four infusions down, two to go. If the schedule holds, I take my last chemo pill the last week of June. So there's a light at the end of the tunnel. I can't wait, I feel so good during my off week, it will be nice to feel good for consecutive weeks. The side effects from the infusions are hanging on a little longer each time. This last infusion kind of sucked. I started getting a tingling sensation around the IV site, by the end the inside of my whole right arm felt like it was asleep. The cold sensitivity is the most annoying, feels like you're swallowing razor blades when you drink cold water. The peripheral nueropathy causes tingling in the hands and feet, isn't great by manageable. So far I've been able to keep the hand/foot syndrome (cracking, swelling and blisters on the palms and sole of your feet) at bay, by slathering up with bagbalm before bed. I think I'm also experiencing a little "Chemo Brain", my short term memory seems to be slipping and forming and saying words in a conversation is challenging from time to time. Telling someone a story I've told before doesn't seem to be affected, but with new speech sometimes the words just don't seem to flow. I see the words in my head, but they just don't get turned into sounds out of my mouth. Really kind of annoying. So if I seem slow from time to time, you'll have to forgive me. Luckily it seems to be temporary.

Once the Chemo is done I'll probably have some scans (CT and another colonoscopy) in the mid Oct. time frame. Oh how I'm looking forward to potentially two consecutive months of no poking an prodding.

Just in case anyone was wondering, I still don't recommend cancer. It's not that fun.

Pain in Nick's Ass: Serious Bussiness

So probably everyone realizes Cancer is a big deal. If you don't let me tell you from experience, it's a big deal. It's easy for cancer to become the 'elephant in the room', but one of the reasons I decided to write about it in this blog was to at least reduce the size of the elephant. I really have no problem talking about it, if you have a question and I know the answer, it's yours. Beware though, I'm am not a believer in the, "there are no dumb questions," paradigm. Yes, there are dumb questions, some really dumb questions. "Does having cancer suck?" Yes, dumb question. "Are you going to die?" Yes, we are all going to die at some point, dumb question. "Is Chemotherapy fun?" Yeah, I kind of like feeling like poop for days on end...No Chemo is not fun, dumb question. "Does it hurt to have a portion of your colon removed?" No, it tickles...of course it hurts, dumb question. I think you get the point.

One of the first things you do when you have a serious health issue, is you look at the odds of a good outcome. It's human nature to try and correlate those odds to your individual case. The problem is each case is individual. As of 2000 stage IIIB Rectal Cancer had a 5 year survival rate of about 45% according to the American Cancer Society. Yeah...55 out of 100 people with my Cancer don't make it 5 years. That number is a bit sobering, huh? On the other hand 45 do survive, unfortunately there's no way for anyone to know what group you're in. The 45% is a bit of a worst case number as it includes non-cancer deaths and the data is a bit old. A better number is probably is probably in the 60-70% range.  Even then I have a number of things on my side, my age being probably the biggest one. If the cancer comes back, I'll be strong enough to kick in the teeth again. But, the fact is, there just isn't enough data of people my age to get at the survivability rate for my little demographic for my particular cancer. In the end, I'm not sure it matters. What if the survivability is 90%, that is still 10 people dying out of 100. Is that suppose to be comforting? Not if your one of the 10. In the end the odds are what they are. It really doesn't matter what the odds of getting struck by lightening are to the guy that gets struck by lightening, because his day just got really bad. I have basically been struck by lightening. Out of 300,000,000 people in the US about 150,000 are diagnosed with Colon Cancer. Of that 150,000 only 10% are younger than 50. So that takes the 150,000 to 15,000. The numbers are a little sketchy, but of the 15,000 approximately 1500 are less than 35 when diagnosed. So, I'm one of 1500 in the entire US to get Colon Cancer under 35. About 400 people a year get struck by lightening. So really you have two options let the scary numbers scare you or not worry about them knowing that I will do everything in my power to punch caner in the nose over and over again until one of us wins. I'll choose the later.

One of the other things that go through one's mind is, "what caused this?" Unfortunately a question like this could drive you crazy, because no one knows what exactly flips the switch of a epithelial cells that gets them to start multiplying unchecked. There are risk factors like smoking, obesity, drinking, to much red meat, lack of physical exercise and genetics. But all they prove is correlation not causation. Maybe 'Fat Nick' and all those burritos I ate for lunch were the cause, but there are plenty of people who are infinitely less healthy than 'Fat Nick' ever was, yet they never get Colon Cancer. So in the end I'll never know what caused the runaway cells and it was likely some mutation that there was no way to control. With that said I'll probably be living a bit healthier, so don't expect the return of 'Fat Nick'. Yeah I know, he was a fun guy and his head doubled as a basket ball, but he's gone from this world.

I will say it sucks to have to start contemplating your morality at such a young age. No fun at all.  Lindsey and I were forced to have hard conversations about the future of our family. We were going to start trying for kid number two last October. But, "surprise you have cancer", kind of put a halt to those plans. So kid number two goes on hold, or is there even going to be a kid number two? It's really easy to say, "oh just live your life," or some other free spirit BS. To some extent I agree, you don't want every waking thought to be, "damn...I might die in a couple months." With that said a more than healthy percentage of stage 3 cancer patients, don't make it to five years. Would it be responsible of Lindsey and I knowing that, to pop out kids like Pez candy? I personally don't think so. If I'm gone who's going to kill the spiders in the house? It's crappy to have to think about these things, but in the end we both have responsibilities and not taking into account a future potential issue is irresponsible, in my opinion.

With all of that said given the free and clear signal, the significant reduction in the amount of crazy drugs I'm taking, and appropriate length of time to ensure there are no 3 eyed swimmers left in me, we are going to try for another kid. With Linds and I both having siblings and how cool it is, we just can't imagine Oliver going through life without that.

This all might sound a bit pessimistic to some, but it's real and sometimes reality isn't all that great.

Pain in Nick's A**: Adjuvant Chemo Started Today

So I started Chemo today...yippee. The first drug on the cocktail for the day is Oxaliplatin, it screws with the DNA synthesis in the tumor cells due to it cytotoxic (toxic to cells) effects. It's pretty nasty stuff, the nurse came in with a with a gown and thick gloves carrying the IV bag. Makes you feel real comfortable they're about to pump this stuff through your veins. Also got a steroid, Calcium, Magnesium and an anti-nausea drug. The whole thing took about 7 hours. I started getting some of the symptoms by the time the drip finished. Cold sensitivity, soreness in my arm the put it in. etc... There's a huge list and I had more by the time I got home. Good times...

I started the Xeloda again tonight, I only have one more pill to take a day than I did before, so I'm hopeful it won't be much worse than last time.

Found this little video on the Xeloda...kind of interesting.



With all of that said hopefully this is all for nothing and the radiation and surgery did the job to remove the tumor.

Pain in Nick's A**: T+24

It's been 3 weeks since the pain in my a** was removed, literally. Figuratively, it will continue to be a pain in my a** for months to come. With that said I'm feeling pretty good these days. There's no doubt in my mind that my wonderful nurse(Lindsey) has pulled more than her share of the weight these last few months and that has helped with my feeling as good as I have. Basically being a single mom taking care of two small children. Luckily only one in diapers though. I'm truly blessed to have found such a wonderful woman.

I didn't realize how uncomfortable I was the two weeks prior to surgery until I was able to compare it to the last two weeks. For the two weeks prior to surgery if there were feces near the tumor it was uncomfortable. How uncomfortable? Basically it felt like I had to take the a giant poop ever nearly all the time (even gas would cause this feeling as well as tiny poops) and if I didn't I'd start to get nauseous (I almost tossed my cookies the night before surgery). No more feeling like giant poops need to happen all the time and nothing coming out and no more nausea.

Bowel function was one of the things the surgeons warned about. You see I have about half the amount of rectum as regular person now. What does that mean? Well the rectum acts as a temporary storage site for feces. As the rectum fills stretch receptors in the walls stimulate the need to defecate. If you don't act on the urge, often the rectum pushes the feces back into the bowel relieving the urge. So since I have less rectum, it fills faster, the walls stretch sooner, which creates the urge to defecate more often, with less ability to push it back into the bowel. Both surgeons we talked to said it's not uncommon for people to have the urge to defecate upwards of 15 to 20 times a day (uh...that would suck) after this type of surgery and then ask for a colostomy after the fact. Both also said that it can be trained down over time, like exercising a muscle (which the rectum is), but after about 2 years it is what it is. So I'm ahead of the curve here. I'm probably averaging about 3 poops a day, which is entirely manageable. At the two week follow-up the surgeon said it's likely that this is the worst it will ever be and could get better. So going from having an urge nearly all the time to 2-3 time a day...I'm going to call that a win.

As many know, I'm a bit of a nerd. I mean how many people build a machine to dispense margaritas, just because they can? Yeah not many, just giant nerds like me. I wanted to see how the incisions healed so I took a picture nearly everyday from 2/1 to 2/10.  Below is a little animation of the change.

Incision healing

As a medical device engineer I'm always fascinated by how different things are accomplished in surgery. Connecting two tubular structures in the body is called an anastomosis. My surgeon used a intraluminal (circular) stapler made by Ethicon (J&J). The stapler places two offset rows of titanium staples to create a seal between the two sections of bowel. Here's a video showing the process (warning: a bit graphic as it's a real surgery).

I read a study that said that after 3 days post surgery the coupling is at 60% strength of the bowel wall and after a week the coupling is a 100% strength. Pretty amazing that after a weeks it's full strength.

Pain in Nick's A**: T+7 Days

So things are healing pretty well. Everyday I'm feeling a little less sore. I walked a mile the other day (slowly, very slowly) and felt pretty good. Planning on another walk today. Right now I'm just on Ibuprofen, haven't take a Norco (aka: Vicodin, hydrocodone and paracetamol (acetaminophen)) since the first night. Some may wonder why I'm skipping the 'good stuff', two reasons. First, the main reason, one of the main side effects is constipation. I'm just thinking that I should be as easy as possible one my new plumbing. Second, I'm just not a huge fan of narcotics. I also like to 'feel' my body, as I believe it gives the best information on how things are going and I don't want something masking those feelings unnecessarily. Sounds a little hippy like now that I've re-read it. Oh well.

So I've gotten through a about a half a stack of previously unread magazines and have nearly drained the DVR of unwatched shows. Next on my list is starting to design the mechanical structure for my future 3D printer. So I'm not quite bored yet, but definitely getting a little cabin fever.

People keep asking about the incisions, here they are, in all of their glory. Little bruised, huh. No wonder it feel like I was kicked in the gut, looks a little like it too. Well what I imagine a good kick in the gut would look like. The three little upper incision are the laparoscopic incisions where they put in the various instruments and cameras. The lower one is about 3 or 4 inches, is where they pulled out the bad portion of colon.

The incision.

Home Sweet Home

 Hooray! We are home!! It has never been so good to be home!

Nick is incredible. He is now the star patient for two of his doctors. First, he was the first patient of his radiation oncologist to work the entire 5 weeks of treatment. Next, his surgeon told us to expect 4 to 5 post surgical days in the hospital and Nick was discharged at the beginning of his third post surgical day. He is strong, determined, and positive.

The day of surgery was by far the longest day of my life, but it was such a relief to see him come out of recovery with a grin on his face! The tumor is gone and we are one step closer to him being well. The team at Stanford was amazing and we were so blessed to have support and help from our family and friends. Oliver loved all his special dates too. Love you all.

day after surgery

 walking around the unit with Mom and Dad

 walking around the unit with me

making a card for daddy on one of his dates ;)

 first meal at home

Pain in Nick's A**: Going home

Well after three nights and four days all of my liquids/solids/gases are entering and exiting me in the right places, so I'm headed home. My pain has been managable with a little medication and the nurses have been great. All in all it has gone pretty smooth, outside a noisey roomate.

Thanks everyone for all of the support.

Pain in Nick A**: I'm alive

I woke up from surgery. So that's a good start. I feel pretty good other than the fact it feels like I've done about a million crunches. I am also a bit sleepy right now, but that's to be expected. Had a little chicken noodle soup and saltine crackers for dinner and everything its staying down.

I asked the surgeon to take a picture of the removed tissue. Check out this, it is about 12 inches long. The darker red portion on the left side is where the tumor is. The first pic is the back and second is the front.

Thanks for all of the well wishes. It is a wonderful feeling knowing I such a large support group.

Pain in Nick's A**: We have a game time

Lindsey and I met with the surgeon for a pre-op consultation. All in all kind of a waste of time, but whatever. The one thing that was decided was a surgery date. Jan. 25th will be the date I lose about a third of my large intestine. Oh and what ever is left of the cancer. Why do I say what ever is left? Well I guess 25% of the time the cancer is completely killed by the radiation and when they take it out. Which in the end doesn't mean the treatment changes (still will have surgery to remove it and chemo to kill whatever may be floating around my body), but the down staging of the tumor reduces the chance of recurrence and in the end that's the main goal of this whole thing. I can tell right now that the tumor is smaller, how can I tell. Well besides the fact that bowel movements feel like passing fireballs currently, they are about twice the diameter as they were at the beginning of this whole thing. So, the tumor that was clogging the pipes isn't doing much clogging anymore, which is phenomenal. You take for granted how great taking a complete and full bowel movement is, until you can't.

So it looks like I'll be in the hospital for 3-5 days. I can't leave until my bowel 'wakes up' and they need to make sure there's no leakage in the anastomosis (the reconnection of the bowel). Surprisingly I'm suppose to take walks as it helps 'wake up' the bowel and I can eat, when I feel like eating.

As of now I don't have any cancer related appointments until the 14th of Jan. for CT and PET scans, then a colonoscopy on the 16th. So three weeks without having to go to Stanford to get poked and prodded at, sweet. On top of that I'm feeling better everyday (pain in my a**, is almost not a pain any longer...for now), so the holidays should be pretty enjoyable.

Pain in Nick's A**: FIRE IN THE HOLE!!

Anyone who loves pickled jalapenos (when I say love I mean 1-2 pickled jalapenos per nacho chip for a good size serving of nachos or equivalent) like I do, has experienced a little of what I'm going through. I OD'd once on pickled jalapenos, not pleasant, not as bad as the night I OD'd on garlic (yes it's possible...oh is it possible)...but that's another story. Anyways, take the next day's pickled jalapeno bowel movement and multiply that by 10, then have the 10 slowly decline over the next 2-3 hours. That's about what a 5th week of radiation therapy to the rectal area, bowel movement feels like. Needless to say pickled jalapenos have not graced my dinner plate in some time, no need to add insult to injury.

I was prescribed what they call butt balm (Nystatin, Lidociane, Desitin in equal parts) to slather on like diaper rash cream (which I'm now a pro at with Oliver's sensitive booty skin). It seems to work OK. I will say that the saving grace has been the Cottonelle flush-able wipes, because wiping with dry TP these days feels like wiping with 60 grit sand paper.

All in all I'm still feeling pretty good. Met with the Radiation Oncologist on Monday and he said I'm their new model patient, as I'm still working and feeling pretty good. I guess the model patient prior to me was only able to handle working 3/4 of the way through treatment. I do have to say that part of me feeling so well has been my beautiful wife taking such good care of me. The symptoms prior to the start of treatment were pretty damn uncomfortable (basically feeling like you have to take a s**t (sorry couldn't bring myself to say bowel movement one more time) all day, then you do and the feeling comes back 10 mins later) and those are all but gone. So from a bowel comfort level I feel much better today than I did day one. More than anything I just feel super tired and sick from time to time, but that's pretty easy to contain.

One more trip under the radiation gun and 10 more chemo pills and Phase 1 is complete. Still a long road ahead, but looking forward to feeling somewhat normal over the Holidays.