My cancer story

On Facebook I've been very happy to reconnect to many friends with whom I've lost more frequent contact with.  I recently posted (you have to be my friend to view) about how I've been cancer free for 3+ years, and there was a question from my friend Jill Cherrington Christensen who I met and had a lot of fun with back 18 years ago when we along with many other people were all in the same ward as Freshman back at BYU.  We were all nerds together in the honor dorms, us guys in Chipman hall and the women in Budge hall.  It should be noted that this was a very favorable ratio, I think we had 3 young women for 2 of us guys.  Anyway, so Jill asked me about my story, and I think it's worth retelling.
It was 2007, I was in the throws of my second semester of graduate school, having returned to do my MS in Human-Computer Interaction Design.  Graduate school is a demanding time for anyone I think, but I had noticed my energy levels especially low, that I had great difficulty concentrating, and was often sick.  Of course I tried to push myself to keep up with my peers, an amazing group I am still thankful for.
I remember on one of those long class days in late february or early March where I had Jeff Bardzell's class, right before Eli Blevis' class and the day had started with an amazing game design course I was taking from Sonny Kirkley that semester.  I went to the first floor bathroom in the building that is now called informatics west (this was before informatics east was finished) and with some difficulty I peed blood, gross hematuria for you medical types.  I remember Eli coming into the bathroom shortly thereafter and asking if I was ok, I gave my standard fine, and left.  I felt like I needed to do something about it, but of course I felt like I should go to class first.  I called Vanessa and talked to her about it and after class that day I rushed on over to the health center.  I had the standard pee in a cup kind of thing and even though no longer really visible the test not only showed that I had high levels of blood in my urine, but my blood glucose (sugar) levels were high.
Within a few days I had an appointment with a doctor, the person who was to become my doctor, Dr. David Burkhart.  I was diagnosed officially with Diabetes Mellitus Type 2 rather quickly based on my fasting glucose levels and my highish Hemoglobin a1c score. (~7.8 if I remember right).  After that I started to deal with the Diabetes by taking a course and getting back on Metformin (I had been taking it several years before this, but my scores had improved so much and my health insurance lapsed that I had stopped taking it, also at that time I never had an official diagnosis, just an ad hoc one).  My doctor also suggested that it would make sense to have an ultasound "to make sure there aren't any goombas" sitting there in my kidneys.  I thought it made a lot of sense to schedule this for after CHI 2007, the really big conference for my field which was April 28-May 3.  I had that ultrasound on Monday May 7 or 8.  I remember very distinctly getting a call back from my the nurse who most often works with my Doctor, Susy French very soon after the ultrasound, I think it was the next morning asking me to come in that afternoon.  What that really meant hadn't really sunk in yet, but Vanessa and I went together (I think).  It was clear that there was in fact something in my left kidney that ought not be.  Dr. Burkhart said a detailed scan via CT was necessary, and that I should see a specialist.  He suggested Dr. Eric Smith at Summit Urology.  I asked what I now consider to be one of the important questions when it comes to referrals.  I asked who he would see if he were in a similar situation.  Without hesitation Dr. Burkhart said he would see Dr. Smith, not only was he a friend, but he was one of the best in the practice and Summit was virtually the only private urology practice (although certainly a large one) in the area.  He also assured me that he had a lot of experience as a surgeon so if it came to that he would trust Eric to cut him open.
Before we met with Dr. Smith a CT scan was ordered the very next morning.  Our response was typical, we immediately began reading about what the problem could be.  Without a better picture that the CT scan would provide we didn't know for sure, but it was most likely cancer.  We explored all the different types, what they would look for on the scans and what the course of action was.
The next morning on the 9th I did the drill I'm now actually quite used to for CT Scans.  First is the no food part, then you get to start drinking the awful barium drink.  I remember going to Rose Radiology in town to pick up the drink and get the instructions.  They offered banana or grape, I asked which one was better.  I got an honest reply (always a good policy) when she said they were both pretty awful, but if she had to she'd take the banana.  I've always been a fan of artificial banana flavoring (yah I know I'm a bit odd that way) so I followed her advice.  If you don't already know that barium stuff will clean you out.  Quite often they ask you to take some kind of laxative to help clean you out as well, well I certainly didn't need to do this.  I asked what the technician thought and as per their regulations he can't comment The radiologist sent his report to our doctor the next day.  The appearance of nectrotic tissue and a few other characteristics gave the indication that it was renal cell clear cell carcinoma.  The good news at that stage was that once properly removed there is a low reoccurrence rate, and the bad news is that if it should reoccur in less than 5 years the survivorship is very low.  The news that I liked most of all though was that chemo- and radiation therapies generally have little effect, so that surgery was the very best option.  By now it was the 10th of May, a Thursday we scheduled the surgery for the 15th, the following Tuesday.  On Friday we went in for all the pre-operation procedures, to sign the paperwork both at the hospital as well as at the doctor's practice to really understand what would happen in terms of details.
On Thursday and Friday we put the word out to church family in Bloomington, the HCI/d community at school, and our family and friends scattered all over the world.   We called for fasting and prayer over the weekend.  I was bold in asking for help and support from everyone I knew.  Normally I'm not so great at asking for help, but this was not one of those occasions.  I was totally blown away by the support I got from my school community.  People who I didn't know really prayed at all said they would.  People fasted, people did whatever they normally do in their spiritual traditions to help others along their path.  It was amazing.  Our church family also held a special fast for me as well as another member who was going in for surgery the same week.  Our family all over fasted.  It was an amazing outpouring.
Even before the fast started I had a feeling of peace, but as I fasted and prayed that feeling of peace and reassurance came over me deeply.  I had no doubt that I would recover.  I received a priesthood blessing and I was blessed then that the surgery would be a success and I would heal quickly and totally and that I should listen to my doctor's advice.  It was this reassurance from God along with the outpouring of help from friends that got us through.
On May 15, 2007 I went in to Bloomington Hospital and they performed a radical nephrectomy, meaning the whole kidney, the lymph node, and the adrenal gland and the fatty tissue around it.  During the surgery Nina watched Ezra while Vanessa waited at the hospital along with at least quite a number of my friends from the HCI/d program including two of the professors (Thanks Jeff & Shaowen!).  The surgery was fairly short and went without any kind of problems.  Pathology indicated that it was a Stage 3 tumor, meaning it had gone outside of the kidney.  In my case it had just barely pierced the renal envelope and all indications were that there was no spread beyond the area that was removed.  It was confirmed as well that it was as they thought renal cell clear cell carcinoma.
The next three days were a series of visits from practically every single member of the HCI/d program that was in town between semesters, many people from church including our Bishop and my wonderful home teacher Erik Willis, and many others.  While absolutely following all the orders I certainly made sure I was as active as I could be.  The long cut through my core muscles (they went through the front) left me unable to bend over very far or lay on my side or turn over.  I walked around my hospital ward as much as I could dragging the IV machine, pushing my little pain medicine button the first day or so and eventually they took it away as I didn't seem to need it any more.  I asked to be released as soon as possible as you just can't sleep properly in the hospital.  I just wanted to rest and so, in what most of the staff agreed was the fastest they've seen after a cancer surgery, I was released.  Of course most of the other patients who have similar surgeries are double my age or more (I was 33 at the time), so the bar wasn't terribly high.  Still I was happy to return home.  So May 18th I spent the night in my own bed.
Vanessa and I were a pretty pathetic pair I must say though.  She was 7 months pregnant (Micah was born July 5th) and she couldn't bend over and pick anything up.  I couldn't either.  My parents came up for two weeks to help watch Ezra and ease us through the big part of the recovery period.  We got an easy reacher and laughed at how pathetic we looked together.
I ambitiously wanted to change the way I lived my life, by eating more healthily, which I thought meant eating raw.  Of course being a student I realized I couldn't possibly afford it.  Unbeknownst to me Tyler Pace raised $500 for an "HCI/d pantry makeover fund."  It was an extremely touching moment when he and Natalie came over and presented the check to me.  In the memo/for line he put "Your awesomeness." 
As I mentioned occurrence within 5 years has a very low survivorship rate, so vigilance is necessary during that period especially.  The first two years and a half years I had a CT scan every 6 months, and just this month I had an ultra-sound (less radiation is a good thing).  I'll alternate between CT scan and ultrasound for the next two years until I reach the 5 year mark.  After that we can let the frequency diminish in consultation with the circumstances up until that point.
Having cancer taught me several things.  First is that when it really counts and you ask people are totally ready to help in amazing ways.  Second, things are what you make of it, I had an amazingly positive experience from the start.  It brought me closer to many people, doctors who I still stay in contact with, nurses, friends, and many others.  Third, is that God can give you peace.  In my case the outcome was that I still get to live this life, but even if it had not been I would have felt peace.
I'm sure there are many other things and details and people to thank, but this is my first draft.  I'll add to this post and get some shorter versions, but here's the long one.