Matt and Crystal and family have arrived safe and sound in Utah and expect their belongings to arrive tonight or tomorrow. It is good to be together as a family. Unfortunately, the children have all contracted some form of strep throat, bronchitis and/or a viral infection. The first ones started getting sick on Monday, but Nathanael and Hannah appear to be the only ones still sick. Poor Caleb had a double ear infection and simply sat listless for the entire plane ride. It made it easy for Grandma and Grandpa to take care of him, but the change in air pressure must have been really rough. He's been much better since getting antibiotics, as is everyone else, but their sickness means that we've had to impose a mini-quarantine to make sure Matt doesn't get sick while his immune system is compromised. It's been tough not being able to snuggle the kids, but we've gotten pretty good at blowing hugs and kisses across the room. We are all in the same house, and we are all getting the care we need. We can't describe how grateful we are for those things.
Matt had his first appointment with the physician group in Utah today. It was for a simple blood draw to make sure that his markers are high enough to administer the second round of chemotherapy. The blood stick didn't bleed very long at all, which is an improvement over last week when they needed two gauze strips before it stopped bleeding. Based on that, we're guessing that Matt's platelet count at least is back up to a relatively normal level, so we're hoping the rest of the markers are as well. If so, bring on the second round.
Matt writes: As I look back over the last few weeks I realized that there is a story about my treatment that many of you would enjoy. I can look back on it now and laugh, since the worst is over, and it was unique enough that I may not be facing it again. Besides, the story is about how I learned what it was like to be pregnant. It's a perspective not many men get, and I for one can't look back on it without laughing.
In the week before we rushed to MD Anderson certain that there was something more seriously wrong than we had initially thought, I began to feel my belt tightening. We were on vacation at the time, and I had already lost 20 lbs through hard work trying to get in better shape, but I figured that I simply had eaten too much. Looking back now, I realize that I didn't really eat that much, and it should have been more than offset by the extra amount of exercise I was getting. I finally realized that something was seriously wrong when, in the early morning before we were getting ready to leave, I was in so much pain that I could hardly bend over. One of the reasons we beat such a hasty path down to MD Anderson was because of this experience, and when we received the diagnosis, and subsequent treatment, we were glad for the warning that this pain gave us.
It turned out that the reason my belt had begun tightening was because my liver had grown so much that it had begun to exert pressure on the return veins from my legs. Over the course of the next two weeks, I found that I could hardly eat or drink as the liver began to compress my stomach. During my initial stay in the hospital, they continued to pump me full of fluids via IV drip. And I continued to try to drink as much as possible – a much more difficult feat than you can imagine, since most of the fluid continued to stay with me. You've all heard the jokes about people who store various drinks (usually alcoholic) in their legs – the reality is much worse than you can imagine, although a lot of the fluid I was retaining was also in my abdomen. As I compared notes with Crystal, we both began to realize that the complaints I had, from not being able to bend over, to waddling slightly whenever I could walk, sounded a lot like pregnancy. Of course, I had all sorts of pain to go along with it, which I hope most pregnant women don't have. In all, I gained more than 30 lbs from my pre-vacation weight, with no end in sight.
My brother Philip, who is an MD, explained it this way: The kidneys are basically stupid organs. They are designed to retain fluid based on the amount of blood flowing through the heart. If the blood flow through the heart is reduced – say, because you've just been slashed by a saber-tooth tiger and need to stop blood flow to the wound so you don't bleed to death – then the kidneys prevent fluid from escaping to give you the best chance. However, the kidneys had no way of knowing, in my case, that the reason there was less blood flow to the heart was because it was all stuck in my legs and unable to get past the liver. My kidneys thought I was bleeding to death, so they kept retaining fluid to prevent that.
Then, on Monday, March 24, I began to flush the fluid out. Apparently, the chemo had enough effect in reducing the liver that the blood was able to get to my heart in large quantities, which finally convinced my stupid kidneys that I wasn't bleeding to death. By Friday, 5 days later, I had lost 45 lbs – which is more than most women lose in pregnancy. What a world of difference that made, although my legs were pretty much putty after having been inflated to that degree. Just imagine what a latex balloon looks like after being over inflated and then imagine that your legs are that balloon and then try to walk on them. I could hardly move. So, in the course of about three weeks I gained and lost so much weight that Crystal is convinced that I now know, as much as it is possible, what it is like to be pregnant. All of you women have my deepest sympathies – but thank you for putting up with it. I'm glad that my mother did and that Crystal was willing to so we could have our wonderful children.
One last note – you may have noticed that I gained 30 lbs, but lost 45 lbs. We've determined that I probably did actually lose weight on vacation. Plus, I spent about a week hardly being able to eat or drink anything. Add in the effects of the chemo, and I'm actually pleased that I only lost 15 lbs net weight. Unfortunately, I haven't been able to gain any more back, although I've stabilized. Crystal is force feeding me about every 2 hours, and I've taken to drinking super-concentrated nutritious shakes to increase the calories. Never in my life have I had to worry about gaining weight – that always came naturally. In so many ways, this whole experience is simply surreal.
