Reflections on Cancer

Just in case you missed it, here's the shorter versions and the long version of my cancer story.

Reflections on the Cancer....

or why "bad" things happen to "good" people

Cancer can be seen as a really bad thing. I'm not saying it's an easy thing, or that everyone has the kinds of outcomes I had. Clearly though challenging things like cancer can present opportunities to us and to those people around us. So many people rendered service to us, supported us, prayed for us. You all did amazing things for us, thank you, thank you , thank you.  You blessed our lives, and I'm certain you were blessed for your service. It is in facing situations like this that we learn what this life is really all about. How will we respond? Will we reach out and help others? Will we allow others to help us? Will we curl up in a little ball of bitterness and rage against God/the universe/everyone else that seems healthy and happy?

So when hurricanes happen, people die, houses are destroyed, but people can also reach out and help, neighbors get to know and support and even come to love each other. When a tsunami happens the environment may be polluted, people may die, businesses my disappear, but also people serve and love each other, they pull together, they serve selflessly, and we realize that for all of our strong foundations and engineering, all that we make and build with our hands can come to naught because nature is mightier than we are, and always will be.

Just to be clear, I don't always choose the happy place. I don't always choose to serve others and ask for help, sometimes I curl up and want the world to leave me alone. I am glad though for the opportunities I've had to serve others and be served. The more service we put into our lives of both types, the more we see what is important in this life.  To be loving, to help others, to be humble enough to be helped, it is through these kinds of activities that I can take the focus off of me, my suffering, my (often small and petty) problems and focus on making the world better for everyone.

Betrayal by..... yourself?

After being officially diagnosed as a diabetic (which is really part of the story as you may recall) I really didn't like having to take medication each day. I was lucky that I wasn't at the point where I had to take insulin, but I didn't like the idea of taking medication, essentially being dependent on something else, a chemical. I felt betrayed by my body, which I saw as somewhat separate from me. Conceptualizing yourself as your mind/spirit and your body as something else introduces all kinds of curious twists and turns in your thinking. This was a bit of betrayal for me to be diabetic. I've struggled with depression and been on antidepressants. They helped, and in way that was a relief, but again I felt it as a kind of betrayal.  For me cancer though didn't seem like a betrayal and I'm not sure why. It happened rather quickly and there isn't this component of ongoing need to take medication. I received the reassurance that everything would be ok. I still celebrate the milestones as a fulfillment of those reassurances from God.

I'm starting to think though that perhaps conceptualizing myself as my mind/spirit is not really helpful. It just leads to not liking your body, or betrayal. I think I could go on about this topic and how it relates to other parts of my life, but I think I'll save that for a future post.

On Being a Cancer Survivor

With the recent passing of my 4.5 year of being cancer free I went back and read my previous post on my cancer story I realized how long and while chronological (well mostly) it's almost stream of consciousness style of writing.

This post attempts to summarize in much shorter form my story in two different lengths. Just in case you haven't read the long one, there's spoilers in the short, short one.

Short Short Version of My Cancer Story

In 2007 while pursuing my MSc degree I had kidney cancer, and via surgery they took it out, really the only viable option as radiation and chemo don't work on such a thing. People were amazing we had all kinds of support even from people and communities that I had no idea would respond that way. It was amazing, an incredible experience.

We were left with almost 10k in medical bills, which through a fluke our "life threatening event" policy covered with a one-time payment of $30k. We paid off our credit card debt we had foolishly incurred as part of grad student life.

Long Version of My Cancer Story 

In 2007 I was in grad school doing my MSc in Human-Computer Interaction Design (HCI/d) and about to finish my first year. I peed blood (gross hematuira for you medically prone people) before class one day, and I high-tailed it to the health center after class. Following the blood tests they confirmed my Diabetes diagnosis (it hadn't been official yet) and recommended some imaging to make sure that there wasn't anything more serious causing the problems.

I was a bit chicken and used the extreme busy-ness of the semester to not get that imaging done sooner. I finally went for it just after returning from CHI2007, the big conference in my field. The ultrasound  in early May showed something major in my kidney, so a CT scan was ordered for a few days later and of course we researched all kinds of cancer/tumors of the kidney. Among all this activity I prayed more intensely and more purposefully than I had in a very long while, Vanessa was pregnant with our second child and due in July. The CT scan indicated it was almost certainly a renal cell clear cell carcinoma (because of the presence of necrotic, or dead, tissue inside it), and that it had already progressed to Stage II, so we had caught it early but not very early. 

This kind of preliminary diagnosis meant that chemo, radiation and virtually all other options were off the table as this kind of cancer, and indeed most kinds of renal cancer, don't respond to them. It's surgery or nothing. In a way it's good as one doesn't have to deal with the continued pain of such things. The problem though is that should the cancer reoccur within five years, survivorship is extremely low. Once past the 5 year mark then survivorship increases dramatically.

I had felt more betrayed by my body failing to deal well with sugar/carbohydrates (i.e. my diabetes) than this cancer inside me, but I didn't take time to think about it too much. We didn't pause, we didn't reflect too long, we prayed and we put the world into motion. People to call, emails to send and to get everyone we knew into prayer and fasting or whatever kinds of things their spiritual traditions suggested at such a time. My school family rallied around us, our church family did the same. The surgery was scheduled on May 15th, just a few days later, but there was a weekend between the scan and the surgery. We had a special fast that weekend, and during that time I felt a strong reassurance from God that it would turn out well, and as a kind of confirmation I received a priesthood blessing and I was told I would make a full recovery. I hadn't felt a panic before, but the sense of calm that settled over me was clearly not some kind of denial or not wanting to deal with facts but something much more.

Even our concerns about the medical costs were lifted. The problem was that like many Americans we had a very high deductible coverage, with a 4500 deductible and then we still had to cover 20% of the costs after that with a maximum of out of pocket of $10k, which we found out at that time was per health incident, not per year. For whatever reason we had also taken out a life threatening illness policy which paid out $30k per confirmed incident. Of course we didn't qualify as this was luckily, or possibly unluckily, not considered a life threatening disease as it was in Stage II. In school, and already facing our student loans, and 20k in credit card debt we weren't sure how we were going to handle the finances, but we felt like we would manage.

Friends came and stayed with Ezra while others came and stayed with Vanessa a the hospital. I remember going under very quickly in pre-op. In post-op I remember being foggy and saying thank you a lot. Vanessa told me later that I'm the politest sick person she's ever met. The radical nephrectomy (meaining they take the kidney, the adrenal gland and the lymph node and some of the adipose (fatty) tissue around them) took only a couple hours. I came out with 26 stitches in my stomach and because many of my core muscles were cut through an almost complete inability to bend over or sit up or roll to my left.

I was regaled with visits at the hospital and cards and a few books to read. My parents had arrived to help, and our neighbors who we hadn't really previously known came and pitched in, one mowing our lawn and others making more contact and asking if they could help. A few meals were brought but with my parents there we were being very well supported.

I was eager to get out of the hospital, I hate the fact that they don't let you properly sleep because they have to check on you. I was eager to be active, to walk. I took as many halting steps around my ward as I could each day, dragging my IV along with me. I begged to be released on the third day and my Dr. was happy with my rapid progress. I made an appearance at the traditional driveway hockey game many in my program played on Saturday, and I went to part of church on Sunday.

I walked slowly around the neighborhood each day. I was weak, but I was determined to get back some stamina. We awaited the pathology report which would give us the definitive diagnosis during those days following my release from the hospital. The hospital bills started to arrive soon enough. We we re responsible for $9500 of the total bills, (I think the total of everything was over 30k, which for surgery isn't that bad actually). 

The pathology report came back, and it was not actually Stage II renal cell clear cell carcinoma, but Stage IIIa, the tumor had pierced the renal envelope. I was very lucky indeed to have gotten the tumor out when I did as it was spreading.

We considered a radical change in the way we approached food in our home and prepared to make those changes, and I was quite discouraged at how very expensive eating organic and other whole foods and other things cost. This along with the medical bills had me doubting how we would get along financially. Low and behold all the incredible people in my school program raised several hundred dollars for a "HCI/d pantry makeover fund" and in the memo line of the check it said "Your awesomeness." I was blown away.

Lastly our life threatening event rider on our health insurance kicked in after they got confirmation from the pathology report. Amazingly our whole medical bill was taken care of and we were able to pay off our high interest rate credit card debt.