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.

Here comes trouble!!

Well Oliver's curiosity of all things continues to grow. He's getting stronger, taller, and smarter which makes containing him more difficult. Our philosophy is to not let him do something that will do major harm (bumps and bruises are part of growing up), but let him explore the limits. He's tried to climb the bar stools twice now, both ended in failure. The other day he grabbed his toy microwave and pushed it up to the wall then proceeded to climb on top of it to reach the light switches.

 Oliver playing with the light switch.

I was watching the whole thing, decided he couldn't kill himself and let it proceed. Overall he's a pretty cautious climber and will fuss when he feels he gets 'stuck'. Then a proceed to tell him, "you got yourself into the mess, get yourself out." 9 times out of 10 he figures it out, that 10th time usually requires a 'spot'.

He's also figured out the water dispenser on the fridge. Luckily, we've gated the kitchen so we can keep him out most of the time. Otherwise there would be a puddle on the ground all the time because he absolutely loves playing with water. From time to time Lindsey or I will forget the gate is open. Of course he takes advantage of that, by running in there, slamming the gate behind him, turning to us to wave and say, "buh -bye", then proceed to make trouble.

Playing with the wa wa dispenser.

As you can see we're not raising an idiot. I mean if you're going to play with water why would you not have a kitchen towel handy to dry yourself off from time to time. It only makes logical sense.

Pain in Nick's A**: Radiation Therapy

So lets talk about radiation therapy. Why radiation therapy? Because I think it's kind of cool. Well the radiation portion isn't that cool, it's pretty straight forward. Shoot tumor with radiation, tumor starts to die. Simple right. The trick is how to deliver the radiation dose to the tumor while trying to spare the surrounding tissue as much as possible. There are some things that's you'd rather not shoot with radiation if you don't have to. Those of us of child bearing age, would prefer to keep the family jewels intact. The bladder and prostate seem to be important things, shooting them with radiation is probably not a good idea. With that said, the cancer will kill you dead, so maybe a little radiation damage to the prostate is acceptable. But how do you minimize the damage to the surrounding tissues, while providing enough of a kill shot to the tumor?

Radiation therapy it the medical use of ionizing radiation to damage the DNA of the cancer cells so that they die and/or slow the reproduction. In the old days, the machines typically shot radiation in 4 directions. They'd shoot you from A (anterior) to P (posterior) (front to back). Then they moved the machine 90 degrees and shoot laterally across your body. Then move the machine 90 more degrees and shoot P to A (back to front) and finally move another 90 degrees and shoot you laterally the other direction. The problem with this is you only distribute the radiation dose across 4 different shots, so a higher radiation dose is delivered to healthy tissue. The dose distribution map for this older method, below.

Conformal Radiotherapy dose distribution field

The next advance seems to have come from IMRT (Intensity Modulated Radiation Therapy) The idea here is not only does a patient get shot at from more angles, but the beam is also modulated in shape to more precisely target the tumor. The dose distribution map for this method, below.

 IMRT dose distribution field

As you can see from the above two fields the IMRT targets the tumor more precisely and while more healthy tissue gets radiated, it is getting a much smaller percentage of the total dose. The below video does a good job explaining IMRT and how the 'shutters' shape the dose.

IMRT Video

They have now taken it a step further. If multiple beams are better why not just shoot radiation at the tumor while the 'gun' is dynamically moving around the patient. This is a technology developed by a local Bay Area company called Varian Medical Systems and they call the technology Rapid Arc. It basically allows more precise targeting with more healthy tissue being spared. Below is a quick video describing it.

Rapid Arc Video

I'm being treated on a Varian Clinac 21EX with all of the upgrades. The upgrades include Rapid Arc as well as an on-board imaging system capable of both x-rays and CT scans. Below is a picture of the machine that's doing the work.

Varian Clinac 21EX at the Stanford Cancer Center

My treatments start out by me lying on the couch (bed with the sheet), then the techs position me by moving both me and the couch (couch is capable of moving in 3 directions and rotation in one) to align the tattoos on my torso (yes, I have some tats now cause I'm hard core...actually just three <1mm dots) with lasers. Below is a pic of me in position.

Positioned and ready to go

Once positioned on the couch everyone except me leaves the room. The techs proceed to take both an A-P and a lateral x-ray. On Mondays they also include a CT scan. After the scans are taken they make some final adjustments (adjustments are made to 0.1cm or 1mm) to my location and the treatment starts. The treatment lasts about 2 minutes as the 'gun' encircles me twice (I don't feel a thing as they're shooting me), then I'm done. The daily radiation dose is 2 Gy for a total of 50 Gy for all 25 days. The whole appointment from when I'm called back to finished is probably less than 10 minutes.

Pain in Nick's A**: Phase 1, Halfway Point

So today marks the halfway point in my chemo/radiation portion of my treatments. So far so good. Feel a little sick and a little tired, but overall it's not to bad. I was able to walk 9 holes last Wednesday, didn't post my best score and was a little tired, but it was good to get out. I plan on trying 18 holes on Saturday. It's just good to get outside and stretch the legs. I've also been trying to get a little workout in a couple times a week consisting of a bunch of push-ups and pull-ups. Oliver absolutely loves riding on my back while I'm doing push-ups.

 Oliver providing a little extra resistance

I was hoping to be off on a little break from the Chemo this week, but my Medical Oncologist likes to keep the Chemo in the system the whole time throughout the radiation treatment. Which makes sense as the chemo radiosensitizes the tumor (i.e. makes is easier for the radiation to kill the sucker). I get Thanksgiving off for radiation, which is fine I guess, but it means I'll have to double up next week.

Overall the first week wasn't fun and I lost a little weight, but the last week and a half has been pretty good. I've found that if I eat stuff I like I'm able to get it down. I was in Redwood City last week for a CT scan around lunch and decided to hit up the Woodside Deli. For those who have never experienced the Woodside Deli you're missing out. I use to go all the time when I worked up in the RWC. They have a sandwich called the Godfather, which has various Italian meats and cheeses, pretty phenomenal. Anyways the Godfather was as awesome as I remembered.

We'll see how the next couple weeks go. There are some cumulative side effects to both the Chemo and Radiation, so it will be 'interesting' to see what happens and how bad. But I was expecting worse, so it's nice to be beating my expectations again.

Halloween

Well enough about the pain in my a**. How about some Halloween pictures of the Monkey. We did the pumpkin patch thing and then Oliver went trick-or-treating with Brendan and Cameron. He finally seemed to grasp the whole trick-or-treat thing by the end. One of these days we'll get this kid to smile for the camera, but right now it's all serious business.

Walking around with a little pumpkin

Found a larger pumpkin

Clowning around with Mommy

The Monkey in his monkey costume

The Monkey with Mommy and Meme

Stopping at a house with Poppy and Meme

Looking for a plane or the moon, he's been obsessed with the moon lately

The trick-or-treating crew.

Pain in Nick' A**: Day 1

Well today it started. Started popping pills and started getting a sun burn from the inside out.

Met with the Radiation Oncologist and he walked me through the PET scans and the planning of the radiation treatment. He knows I'm a big nerd (he seems to be one as well) so he showed me the software they use program the machine, treatment fields, and all of the PET scans. I guess the family jewels are going to be spared, but my bladder and prostate will get a bit of radiation. Such is life...in the words of the radiation oncologist, "We're going to treat the cancer we know you have." I appreciate the straight talk. One interesting thing to note is for what ever reason the enlarged lymph nodes did not light up on the PET scan which had him, "scratching his head." Docs scratching their head may concern some, but in my world I know it's par for the course.

Also met with a geneticist today to find out if there's a genetic component to my cancer. I'll write more on that later.

As for the drugs, they're going down. It's going to take some time to find out what best balance of chemistry will be, but today hasn't been horrible.

Pain in Nick's A**: Chemo/Radiation, Phase 1

So what I'm going to call Phase 1 of the Pain in Nick's A** Removal Plan (PiNARP...If the Military can use crazy acronyms so can I) starts on Monday 11/5. Phase 1 consists of  a total of 25 IMRT (Intensity Modulated Radiation Therapy) treatments (5 days a week for 5 weeks) and two cycles (1 cycle is 14 days of two pills a day and 7 days off) of Chemo drug called Xeloda (Capecitabine).

Lets get a look at what we're aiming at, shall we. Below is an image from my CT and I've highlighted the approximate location of the PiNA (Pain in Nick's A**). So this CT scan is an image of a transverse slice (What you'd see if a magician cut you in half and you looked at that cut. Luckily I didn't have to be cut in half to get these images) of my pelvic region. The bright white U shaped thing is my pelvic bones. The tumor look like much, other than some gray blob, But I guess since I drank contrast it's suppose to be more white than gray.

 Approximate location of tumor.

Here are some images of the three enlarged lymph nodes that they suspect have cancer in them. These CT slices are slightly higher (closer to my head) than the previous one of the location of the tumor, with the image on the left being the highest.

Location of enlarged lymph nodes.

Since I love pictures so much how about another. These are two other CT slices along the length of my body (sagittally). You can see the suspect lymph nodes in red and the location of the tumor in yellow.

 Location of the enlarged lymph nodes and tumor.

Pain in Nick's A**: The Plan

So...as you can imagine the last week has been a little bit of a blur. We decided to still go to Vegas for Lindsey's birthday, which was a great decision. It allowed us to 'get away' and hang out with great friends for a bit and not just sit at home and dwell all weekend about my mortality. On Sunday (10/14) my cousin e-mailed and asked if we'd like help seeing a Doc at Stanford. We said yes and by Monday afternoon we had an appointment with a colorectal cancer surgeon at the Stanford Cancer Institute. We kept our initial appointment with the surgeon at ValleyCare in Pleasanton so we could get two opinions.

Since I work in medical devices, I am well aware that there are different levels of surgeons out there. I have one shot to get this right and I know that there is a greater density of great doctors at Stanford than at your local community hospital. That's not to take anything away from the local docs I'm sure there are some great docs there as well, just at a much lower density. So, I won't lie, as soon as we got the Stanford appointment I wondered if talking to the local guy was a waste of time. But, I told myself that if their treatment plans were the same it would make the decision easy and if they were different well...then we had some thinking to do.

Prior to meeting with any of the docs I researched the hell out of colorectal cancer. It's what I do. Having questions and not knowing drives me up the wall. I knew my tumor was low (more rectal and less colo), but I was still thinking it would be treated like Colon cancer for what ever reason. Going into these meetings with the surgeons I thought it would be surgery followed by chemo. I also thought that if I got out of the whole thing with food entering and exiting my body in the same place it does today, I'd be a lucky guy. Well...lucky may not be the best word to describe a guy that gets colon cancer when he's 34, but I think you get the point.

On Wednesday (10/17) we met with the surgeon at ValleyCare in Pleasanton. He seemed like a nice guy and a competent surgeon. He suggested that I do a round of chemo/radiation then surgery to remove the tumor and then a final round of chemo. So this was different than I was thinking. He said that patients that are treated with radiation and chemo first are less likely to have a recurrence of cancer in the pelvis. Sounds good to me...I'm sure this process is going to be fun...but I think once is more than enough for a lifetime. He was also confident that he could get the plumbing back together properly. So after the curve ball of this treatment plan it was time to do more research.

On Thursday Lindsey and I headed to Stanford for an 8:30am appointment with the surgeon there. My cousin joined us for the appointment so she could help us with questioning the doctors. The Stanford surgeon had the same treatment plan as the surgeon at ValleyCare. So that's nice, makes the decision on who to go with Stanford easy. The surgeon also did a digital exam. Now a digital exam doesn't contain an LCD screen like a digital watch nor a computer chip full of 1s and 0s, but it does contain a number one and a zero. But, I'll let you smart people figure out the rest. After the digital exam the surgeon nearly guaranteed (like lawyers, doctors will never give a 100% guarantee) there would not be a permanent colostomy. After we met with the surgeon he said we needed to make an appointment with a radiation oncologist as that will drive the timeline for my treatment. He told us to hang out for a moment and he would make some calls to see if we can get in with a radiation oncologist.

About a half an hour later we went in to see the radiation oncologist. We went over the what the radiation therapy entails. Turns out since the cancer is more rectal and less colo there's a 'shot' they can take with the radiation beams that they can't with cancers that are higher in the colon due to the proximity of other important organs. I also enrolled in a clinical trial (only after I gave the doc a little s**t about enrolling, got to keep these guys on their toes) to study the blood perfusion, as read by a special CT, in rectal tumors throughout treatment. I figure might as well help the researchers find out more information about this s**ty disease. They also said they'll probably use IMRT(Intesity Modulated Radiation Therapy) a special machine that more precisely delivers the radiation to the tumor and less to the surrounding tissue.  But, I guess the insurance company has something to say about that, so we'll cross that bridge as it comes. Then they left to go see if they could get me in with a medical oncologist. We were only expecting to see a surgeon that day, but they were able to get me in to see my whole cancer team with little notice. Another great reason to do this at Stanford, one stop cancer treatment shopping and they're efficient.

A while later we see a medical oncologist, who proceeds to walk us through the chemotherapy plan. During the radiation portion of the treatment I'll be on a chemo drug called Xeloda. Which is in pill form. So no going in and getting infused via IV every so often. So that's a win. He started going over the side effects, which in all likelihood will suck. But, he left out hair loss. So I think to myself do they not just say hair loss because everyone knows that hair loss is a part of chemo or what. I ask, "What about hair loss?" He says I get to keep my hair. So that's another win. Although I still haven't excluded hair loss in my mind, just to be safe. We talk a little about the post surgery chemo. I'll go back on the Xeloda and have to do a 2 hours infusion via IV every three weeks. Again doesn't sound that bad. I had prepared myself for 48 hour infusions every two weeks (old program), but now it's a pill for two weeks and a 2 hour infusion every three weeks. Not to bad. So if the chemo cycle is a 3 week cycle and the full program is 6 months (24 weeks), that means there's only 8 cycles. I also get credit for the chemo (2 cycles) prior to surgery, so after surgery there's only 6 cycles left. Seems manageable.

Below is a rough draft of the treatment plan with some rough dates (of course subject to change).

I'm glad we got to Stanford. I'm not sure why anyone would go anywhere else if they could get to Stanford. It's like the Saks Fifth Ave of Cancer Centers. Everyone was super pleasant, it's a new state of the art facility, they basically developed radiation therapy, etc... Lindsey even got a chair massage while we were waiting at one point. Don't all start lining up to take me to appointments to get your free chair massage, at this point I think Lindsey gets dibs. Interestingly enough they don't provide massages to patients, which I guess makes sense since chemo makes your tissues friable. Don't want to turn the patients into balls of goo.

I went in expecting the worst from a treatment standpoint, so now I'm pleasantly surprised that it seems better than I expected. I guess my "expect the worst, hope for the best" thing is working. Hard to be disappointed when you expect the worst. There's still no doubt in my mind that these next 8 or so months will be pretty bad. But, I hesitate to call them the worst ever though, as I still get to wake up everyday next to my beautiful wife and my healthy little munchkin (sorry for the colonoscopy when your 24) makes me smile on a daily basis.

Pain in Nick's A**: The Start

So last Thursday (10/11) I had a colonoscopy. What led up to it you may ask yourself. Well...I'm abso-freaking-lutey sick of telling the story after today, I really don't feel like saying it again right now...for the 150th time. So....We'll just say that I had IBD (ulcerative colitis/Crohn's disease) like symptoms so I went in to have it checked out.

The colonoscopy in general isn't that bad. The prep is the worst part, a little fasting and drinking some grape flavored laxative called SUPREP and a bunch of water. So I get rolled into the GI Lab where the nurses ask me some more questions. They start asking about my ACL reconstruction I had in '97 and whether or not I had any hardware from the surgery. I told them wasn't sure and joked that if they got to my knee the Doc made a wrong turn somewhere.  Then they gave me a little happy medicine (Demerol and Versed) and I come out with my pipes all check out...or so I thought.

I have a vague memory of putting my clothes back on then walking to a chair to hangout to wait for the Doc. The next thing I remember is the Doc and Lindsey (pushing the Munchkin in a stroller) walking towards me. Which I thought was a little weird because my Dad took me to the appointment and was going to drive me home. So why was Lindsey here? Once they got to me the Doc told me he could only go about 15-20cm in before he ran into a growth that he suspected was cancer and sent it off for biopsy. Then told me I had to have a CT scan immediately. The image below shows what the Doc found. It's what you don't want to show up on a colonoscopy, a large circumferential, friable, multilobulated mass.

Top Right and Bottom Left is the mass, Bottom left is the Doc trying to sneak up on it.

First thoughts...don't really recall but I'm sure an F-bomb or two rolled around my head. They sent me down stairs to have some blood drawn and to pick up some contrast that I had to drink prior to the CT scan. Lindsey drove me home where I promptly went up stairs and took a nap.

I woke up about two hours prior to my CT scan so I could drink the pretty horrible contrast. The we headed to the hospital to get the scan. I've done an MRI before but never a CT. All in all pretty painless. The most interesting part was the contrast they stuck in via IV. It makes you feel warm. Then the nurse said, "It's going to feel like you're going pee, but trust me you're not." It did feel like I was going pee...really weird. After the CT we headed back home.

Friday morning we had an appointment with the GI doc again to find out what was going on. According to the pathologist the biopsy showed that I had a moderately differentiated adenocarcinoma. The radiologist found potentially 3 enlarged lymph nodes in the CT.

It is a tumor. Damn.

New Family Blog

So I decided to merge our previous "Oliver's Fan Club Blog" to a more whole family oriented blog. I mean really why does a year and a half old need his own blog? He's not posting. All he can do is bang on the keys (and somehow reset the background on Lindsey's computer, which she hasn't reset yet for some reason...but that's beside the point). He's really pretty computer illiterate at this point. We're working on it but all he seems to want to do is watch Lewis and Jenson on McLaren Tooned videos and say, "zoooommmmm."


I've been meaning to do this for a while, but just haven't gotten to it quite yet. But as recent life events have occurred, I've decided this would be a great way of keeping people posted (probably have a little therapeutic benefit as well) without having to have hundreds of individual conversations about the same thing. Not that I don't want to (who am I kidding...I don't really want to), I just don't think I'll be able to keep up.

Lindsey is insisting that there is some way to distinguish my posts from hers. I'll work on making it more clear for everyone, but it should be pretty simple. If there are f-bomb laced posts it's probably not Lindsey. I'll try to keep it mostly clean, but sometimes there are just no other words to accurately describe a situation. I mean come on, if you whack you head on the overhead compartment of a plane so hard it bleeds a little (someone may have done this recently) you're not going to say, "Oh darn what did I just do." First of all it's about six syllables to long. I mean how inefficient. It just doesn't say, "Oh my god you stupid idiot why don't you look where you going. That hurts really bad," like a good f-bomb does. One word to take place of an entire sentence, how much more green can I be? Think of how much ink and paper is saved because of a single word that means so much. Just trying to do my little part.

So here we go...we're off...hopefully we (Lindsey and I) will be a little more on it and keep this sucker going.

Quality time with friends

Oliver always has so much fun playing with Brendan and Cameron. It is fun to watch them together. Brendan dotes on Oliver and he soaks it up! Love it!


We got to meet Enzo (Dave and Jen's new addition)! Oliver was entranced by him, but I'm not sure Enzo felt the same way.

Look at me Mommy!

Like every other day, I put Oliver down for his nap and a little bit later I checked to see if he'd fallen asleep. Nope! He learned how to pull himself up and is now climbing on everything and anything he can!

Trip to Southern California

We took a trip down to Southern California for the wedding of Lindsey's friend, Kelsey. It was a great trip. We got to see Chris and Lauren, which is always fun!


Oliver spent most of dinner hanging out with Chris and Lauren. He jumped all around and kept them busy.


Oliver is trying to point out what Poppy should order for dinner ;)

Nikolas' 5th Birthday

Oliver had fun with all the kids at Nikolas' party.


Smile :)


They are getting so big. Mladen and Oliver are 20 days apart and it's been fun to watch them grow together.


There was a pinata at the party and Oliver was laughing hysterically whenever the kids hit it. We tried to get it on video, but didn't succeed.