Monday, September 7, 2009

Here’s your epic Part 1

Here’s your epic Part 1:On Thursday, July 30, Chicago White Sox pitcher Mark Buehrle pitched a perfect game. He had to rely on a mindblowing defensive play from one of his teammates near the end but he did most of the work. In the Sports Illustrated article that chronicled the event, writer Lee Jenkins put the feat into perspective this way (the best way to put any great baseball moment into perspective) - with stats:In baseball history, starting in 1900 as far as most historians are concerned, there have been 263 no-hitters but only 18 perfect games (27 up-27 down). That’s out of 779,118 starts which is .0023%!That’s pretty special and worth celebrating. I’ve been officially amazed by it and have been thinking about it a lot, lately. I mention it here because it has kind of framed my mindset recently. I’ve been narrowing down the things I’ve been celebrating lately, trying to get the most quality out my everyday experiences. I’ve been loosely following the various sports I like and trying, as always, to find new musical wonders but the sports have been slowly fading in my mind the last week or so and I’ve ramped up by musical exploration. I’m going to miss most of the UM/FSU football game tomorrow and I’m ok with that. Yeah, I know, sacrilege! I have, however, discovered a new appreciation of older singers/instrumentalists I used to not be able to stand. One being Judy Garland.My seemingly incoherent babbling has a purpose. Last week, we thought we had a pretty good handle on Charlotte’s cancer, her proton radiation treatments (conducted at world renowned MD Anderson Cancer Center in Houston, Texas) were over, we were all finally home and ready to begin the rest of the customized chemotherapy developed by researchers at the same MD Anderson.We got a call from the folks at MCV confirming an MRI appointment scheduled for early Wednesday morning and we just assumed it had been ordered by Dr. Kahn or Dr. Tye since we had an appointment in the Nelson Clinic later that day. There we go assuming again.So I scoop up Charlotte early Wed morning and we go get an MRI. As usual, when they’re not familiar with a patient, medical professionals tend to make their own assumptions and when the anesthesiologist mentioned starting an IV in CJ’s arm, I said, “Oh no you’re not. She’s got a central line.” The doc said, “We still like to have it available. We’ll do it while she’s out and cap it before she wakes up; she won’t know a thing.” I was confused as to why they would need to do this and told him I really didn’t think that was necessary. They’ve never done that to her before. Finally I showed them her Hickman double lumen (sp?) line and the lightbulb went off. I can’t tell you all how many times we have had to head off doctors and nurses diving for the needles. Shouldn’t these things be written down in her chart somewhere? I will say for the thousandth time (I’m sure it’s not the last) be your child’s strongest advocate!I also saw the Klauers before they got started. (congrats on Reese’s clean MRI!)After they took her in, I took the time to head up to the 7th floor to see one of our Romp n’ Roll employees, Lindsay, who got into a car accident and was recovering on the “older kids’ ward” of the 7th floor (that’s the infamous ward where CJ caught the nurses lying to her about medication in her chocolate milk).Lindsay’s hand was seriously injured and she’ll be undergoing several surgeries in the next few months. Her whole family has had a very bad run of medical situations in the last little while so they could use a boost of positive energy. If you would like to help Lindsay, or more importantly, her mother Laura, let us know here and we’ll pass it along. They don’t have a CB site yet but I’m pestering them to start one.So I found out Lindsay was hanging in there and headed back down to the recovery area. I timed it just right and they were just bringing her out when I got there.CJ woke up without any complications and after a little chocolate milk, we headed down to eat, where else, at Chick-fil-a! We met a woman expecting her second child (a surprise baby!) and we talked a bit. For some reason, I found it very refreshing to talk to someone who was at MCV for a very different reason than us. Her situation, risk for gestational diabetes, was almost novel (although I don’t want to belittle it at all). It’s just that is was nice to talk to someone about something other than cancer for a change.Next we went to the Nelson Clinic and signed in nice and early. Charlotte settled in with a few books and I pulled out the laptop. When they called us in, after vitals, we popped a DVD in the player and waited for mommy and Dr. Kahn. Mommy arrived not long after we went in. Dr. Kahn’s timing was kind of bad. Charlotte normally jumps for joy when she sees Dr. Kahn but this time she was so engrossed in the DVD (Strawberry Shortcake) that she didn’t want him to come in.It actually wasn’t a problem because, much to our consternation, we were greeted with complete surprise when we told him about the MRI. “You had an MRI this morning?!?” So off he went to look at the MRI real quick.Here’s where everything starts getting mucky. Dr. Kahn came back in after a little while and says that after looking at this MRI and the post 3rd surgery MRI, he can see there have been changes. Here’s your insight into the world of “Dr. Speak” for these types of situations. When they say “changes,” they don’t usually mean changes for the good. He couldn’t find the July MRI we did at MD Anderson, (they probably never sent one to MCV) so he didn’t have that one for comparison. Compared to the May MRI, parts of the cancer have grown. The thing is, it might be that the cancer grew more after the May MRI and the latest MRI might show that it has actually shrunk since then. If so, that’s good and we can hope the updated chemo protocol (which seemed to have a positive effect earlier) will finish the job.If the three MRIs show steady growth even through the proton radiation treatment, well, that’s bad. Very bad. The other thing is, Dr. Kahn only had a small amount of time to look at the scan and Dr. Tye wasn’t even a part of the conversation, so there was very little information to be had which made us feel like we were being left in the dark. That’s not the best state in which to leave our fertile, imaginative minds. I actually had the stereotypical “kicked-in-the-gut” feeling you hear about and the “all over body ache” was back.It certainly wasn’t what we had hoped or expected. Did the super hi-tech proton radiation, the hottest thing in the world of cancer treatment, work at all? Was the time in Houston a gigantic waste? Did we do all that for no reason?We felt so down for a bit that I didn’t talk about it with anyone I didn’t have to.The next day, Rachel was feeling sick with a cold so we switched Romp n’ Roll shifts. I went down in the morning to help with camp and she came in the afternoon to do Open Gym (less chance to get kids sick).Gotta admit, camp was rockin’! We had 20 kids all doing mostly what we wanted them to do. The co-op band pics on Facebook are a testament to that.Here’s also where my new appreciation of things really shows up. The co-op band “event” is not something that will change the world, just like a perfect baseball game won’t, but it was something that will be hard to match and, I think, worth remembering. I keep looking at Charlotte in those incredibly precious moments I get to spend with her and trying to devour everything about her. Every moment with her is a bonus that I cannot adequately describe in words and I want to remember them. I want to sear them into my memory no matter what happens.After camp, Charlotte and I went back down to MCV to see Lindsay and her mother, Lauren, who, despite being in a wheelchair at the moment, has been staying with her at the hospital. The night before, Charlotte drew her a picture of some food which we presented to Lindsay when we got there. Then we popped in Finding Nemo and they watched it together on her bed. Once CJ was settled, I went back down to the Nelson Clinic to be the proverbial squeaky wheel to make sure things were in motion as far as the July MRI was concerned.When I went up to the window, I thought I clearly explained to the woman at the reception desk/window that I wanted to leave a message for Dr. Kahn, making sure the MRI ball was rolling. She was obviously distracted and not listening to me and was confused about why I was there. “No I don’t have an appointment, I just want to leave a message for Dr. Kahn.” When I saw him through a window, I mentioned, “There he is right now” and she became defensive saying that he was with a patient and he wasn’t available. She also made me feel, and not for the first time, that I was somehow imposing on her by being there. I sometimes get that vibe from the other receptionist as well; almost like we’re kids being pulled into the principal’s office for breaking some rule. I can only think that the “normalcy” we’ve mentioned before that comes after being/working around very NOT normal circumstances for an extended period of time has clouded their perception of why they (and the parents with whom they interact) come to the Nelson Clinic in the first place. Just lately, I’ve been a lot less reluctant to let people know what I think (not that I was that shy before) and I may be something of a problem parent if I feel something needs to be said.Anyway, after getting the message straight, she took the piece of paper on which she was writing back to Dr. Kahn and of course, he came right out to talk to me. (In my mind, I’m childishly sticking my tongue out at the receptionist. It’s amazing what you’re reduced to in these times.) He told me he had talked to Dr. Tye and that he concurred with Dr. Kahn’s opinion. About the July MRI, he said the best thing I could have heard: Joanne is working on it. We’ve mentioned her before. Joanne is Dr. Tye’s right hand nurse and she is a force. If she’s on it, it will get done.After that, I felt a little better and went back up to Lindsay’s room. They were still watching the movie and I, unfortunately, had to do the nasty trick of skipping a few scenes to get the movie to end. We had an invitation to meet with the Randolph-Macon College Women’s Field Hockey team at the end of practice and eat dinner with them. We were getting to the point where if we didn’t leave very soon, we would be seriously late.The drama was minimal, though, so in a small amount of time, we were zooming north on 95 towards R-MC. We got there just as practice was ending and we got to meet the team and “warm down” with them. Charlotte was being her typical shy-at-first self but I was coaching everyone how to ask her about her favorite colors, her age, favorite restaurant, etc…and before too long, she was opening up a bit. At dinner in Estes Dining Hall, she sat in my lap and kind of didn’t want to do much but I needed something to eat, so I asked the girl sitting next to me to hold Charlotte while I ate something. CJ was ok with it and the girl happened to be Lindsay Walker, one of the co-captains of the team. I’m not sure what it is about Walker (as everyone calls her), but Charlotte just fell for her. She snuggled up to her and they seemed to bond very quickly. So I ate and it was pretty good.I also got to see a couple of old students of mine from when I taught there which was really great. I certainly miss it. Maybe someday…Rachel was still not feeling well by Saturday so I taught her morning class. Fortunately, she at least got to come by to see everyone since it as the last class of the session. It was nice because some of the kids will be going to preschool or taking a break until spring and it will be a while before we see them again. Big changes can take place in that amount of time.We all headed back home for a bit to rest and recuperate before CJ and I had to leave for the season opener for the R-MC field hockey team. We got there just before the half and stayed through the rest of the game. I’ve talked about the rest. It’s a great thing the Friends of Jacyln organization does.Somewhere in all the mess, Rachel and I had one of THOSE conversations. It was in Chick-fil-a with Charlotte sitting beside me eating her chicken strips dipped in Barbeque sauce. We had both been stewing over the last conversation with Dr. Kahn, thinking dark thoughts, and going through worst-case scenarios in our heads. I think one can’t help doing that sometimes and I do it all the time no matter how good things are going. I actually it’s one of the things that has helped me cope so well so far.So there we are in Charlotte’s favorite restaurant, speaking practically about “what-ifs.” By far the most morbid but functional conversation we’ve ever had. Neither of us is the kind to shy away from difficult subjects and we both think it’s wrong to not think about possible outcomes simply because it’s hard to face. Denial has wreaked its own havoc on the world throughout history. I know, so has “the sky is falling!” mentality. Try not to worry. We’re definitely not there yet.In our various conversations lately, we’ve established that when CJ was first diagnosed, she was in the 80%+ survival rate category. When the cancer grew through the first couple rounds of chemo, we figure she dropped down to maybe 60%. If the scans show growth through the radiation, she reaches the 50% or less group. These are horrible things for a parent to have to think about but we wanted everyone to know where we are right now. We’re not good. We’ve had some very difficult days since last Wednesday.We have by no means given up hope. All this darkness is mostly because of what we DON’T know. We’re actually kind of mad at MD Anderson because everyone was supposed keep everyone else in the loop and it didn’t happen with the July MRI. Having to wait for MD Anderson to get the scan to MCV is the worst thing right now. Who knows, the scan could show all kinds of progress. We just don’t know and of course, that’s where most fear comes from, right? Fear of the unknown? As before, if we had clear answers/options, we wouldn’t have nearly the stress level.This is actually only part of what I want to write but it’s already overwhelming to read. I’ll post another update later. Please keep the positive energy flowing.Love,Rog

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