A new reality

I first started reading blogs about 4 years ago. I got hooked on a Caringbridge blog first - it was written by the parents of one of my piano students in Iowa, named Heidi. Heidi had been diagnosed with a Wilms tumor (an agressive cancer that starts in the kidney) and her parents used Caringbridge (a website where people undergoing a health crisis can start a blog - www.caringbridge.org) to keep people updated without having to repeat the latest news over and over everytime someone asks. I checked their blog every day, and felt so very connected to them even though we had moved far away. They tried absolutely everything, and in the end, after two long years, Heidi died. Her family posted one more entry and then posted no more. Feeling such a part of their story, even from afar, and then having it abruptly end, with no more communication was harder than I imagined. I felt her loss like no other.

On a Caringbridge site (as in any blog), there are opportunities for readers to leave comments. It is through this mechanism that people network with others who are going through similar situations and find support. I had learned about several other cancer families on Heidi's site, and after her loss, I found myself reading their updates as religiously as I had Heidi's. In the blogging world, someone who reads anonymously without ever revealing himself in the comment section is known as a "lurker". I became a lurker and really got hooked. I don't even remember who I got hooked on first. Pete thought I was nuts, as if I didn't have enough hardship in my own life and needed to suffer vicariously through others. I didn't even know why I was doing it, but just losing Heidi had seemed so hard, and continuing my daily blog reading ritual, for some unknown reason, seemed therapeutic.

I have learned a lot about cancer from reading blogs. One of the most gut-wrenching aspects is what people go through trying to save the life of their child. No expense is too great, no treatment is too extreme. At the end of it all (and childhood cancer ends a life more often than not), families find a very small measure of comfort in the fact that they know they have done everything humanly possible. What some cancer patients go through in treatment is unthinkable and as you read, you find yourself wondering why they don't just accept the reality of their situation and let the child go...at the same time, you know that if you were in their shoes, you'd most likely be driven to go to the very same lengths. I think this is particularly true with children. Through the years, I've often wondered how I would respond if cancer ever visited our family.

I guess we get to find out.

Pete has struggled with any number of mystery maladies in the past year, which I won't get into here. This week, he had a neurological workup where, happily, it was determined he does NOT have MS, though a recent MRI seemed to indicate thus. We celebrated with a trip to Oscars for frozen custard (a local delicacy). Yesterday (the day after dodging the MS bullet), he went in for a follow-up with his surgeon, who had removed a lump from his leg last week. This little surgery had been quite innocuous...the lump has been around for a couple of years, and his dr. figured it was a varicose vein or a cyst...nothing to be worried about, but if it bothered him, he could have it removed. It was bothering him enough that we figured it was time. Last week's surgery happened in the office - nothing but a local - and Pete watched him do the whole thing. He wouldn't even let me come along, and he stopped in to visit a parishoner at the hospital next door to the clinic after he was done. No big deal.

Well, apparently it wasn't a varicose vein after all. It was cutaneous leiomyosarcoma (I think I spelled that right), which affects a whopping 4 out of a million...that's how rare it is. I always knew Pete was special. :) There are no specialists in the entire state that deal with this cancer, and not even any in Chicago. So we went from no MS (hooray!) to LMS (stink!) in 24 hours. There is a real irony to that...

I was at work (it didn't seem necessary to accompany him to the follow-up either) and when he got back to church, I knew as soon as I saw his eyes that something was up. I was meeting in the sanctuary with a guy who is hanging a cable for a curtain across the platform when Pete walked in. He joked around and acted like it was another normal day...normal for just a couple more minutes...just a few more minutes of relief that it wasn't MS before having to spill it, and then begin to live in a new reality.

Neither of us got much work done the rest of the day. Lots of reading about this rare cancer, and intermittent periods of hope (his showed up on a leg, and these tumors are easily dealt with) and concern (what if there are more tumors internally?), and most of all, questions upon questions with no answers.

Today, we go see his primary care dr., and hopefully, we'll arrive upon a strategy. The surgeon was ready to operate again right away and THEN recommend an oncologist. Maybe we're wrong, but that approach feels sort of backwards to us. Plus the fact that this surgeon has been removing lumps from people for the past 13 years and this is the first one that was malignant. Is he the right guy to be going back in?

So - we are at peace, interestingly enough. Pete put a post on our church email prayer chain yesterday - thought it was better for it to come from him than through the grapevine - and we can already sense the power of prayer. Partly we are numb, partly we are sort of floating until we have a better understanding of what is going on, and mostly we are resting in the arms of our heavenly Father, who was not in anyway surprised by what surprises us. He is our sustainer and our hope for eternal life, and we need not fear. Not a bad place to be after all.