Back for the Long Haul

It is good to be back. Not that I have gone anywhere. Still here right in the middle of Indiana, in the good ol’ City of Firsts, Kokomo!

It is time for us to pretend that we are 80 years old and sitting in the park. We can be playing chess or feeding the birds – that is your call. Now having set the scene, we can now talk about health. I mean sometimes I feel that is all I throw at you, but it is a major part in my life right now. Just when I talk about it, I start to feel like one of those crusty old curmudgeons obsessed with his ailments. Believe me, if I could get rid of certain issues, I would be more than happy not to talk about them.

On the cancer front, all is good. My September check up was fine. Chest x-ray was clear, and my blood work was excellent – the marker they look at should be between 1 and 2, and mine was 1.4 so we danced around the living room when I got the results.

I was supposed to have my October check up on Halloween (had a wonderful Jack-o-lantern costume planned for the former home of Leon and current home of Robespierre) but that appointment was cancelled (Dr. Beck had to move the start of his vacation to Halloween) and my appointment was moved to November 13. Many patients would be mad if an appointment was moved, but not me. I want the happiest and well-rested doctor possible checking me out. I am a little pissed that Dr. Beck did not send a postcard, but maybe next time. I mean, you feel rather close to the man who holds your one remaining ball in his hands once a month.

Tomorrow (Thursday), Caren and I will head on down to the IU Hospital in Indianapolis. It will be a decent trip, and we will start off our trip with a quick trip to Burger King for our traveling in the car tradition – a large Diet Coke for Caren and a BK Mocha Java Joe for me. Usually, Caren does not go with me for my monthly visit because I usually just have a chest x-ray and blood work. However, this check-up includes one particular test I have grown to fear. That is why I get my special BK Mocha Java Joe – sort of an act of bribery on Caren’s part to get me in the car.

When we started going to the IU Hospital, the Cancer Center was under construction, and we always had to travel through the bowels of the hospital to get to where we needed to be (hospital basements are fascinating, by the way). Now we go to the newly opened Simon Cancer Center – an absolutely beautiful building on the inside. In fact, you forget that it is a hospital. We will check-in, and I will get my sheet of bar codes. We will head down to the CT scan place, and I will trade one of my “magic barcode” stickers for a gigantic cup (about half a gallon) of extra sweet fruit punch that I have to drink a certain amount of every 30 minutes. The process takes about 2 hours to drink all the stuff. During that time, I will head upstairs and give another “magic bar code” to the people in Radiology and I will have my chest x-ray. Then it is back to the basement where they hide their CT scanners, where Caren and I will sit and wait for the CT scan from HELL! Luckily, I only have this test every three months, and this happens to be the lucky month!

Over the years, I have tried to be a good patient and deal with medical tests without complaint, but the CT scan really gets to me. I am fine during everything with the CT scan until they take the very last scan of the lymph nodes in my pelvic area. Before the last scan, they inject me with a dye that feels very hot, and I can feel it flowing slowly through my body – sort of the up one side and down the other feeling. While this lava flows through my body, I start to feel like I am going to throw-up. Seriously. This is the first time EVER I have hated a medical test to the point that I do not ever want to have this test again. Mind you, this whole process takes about 60 seconds, but that last 20 seconds is HELL, and I almost left them with quite a mess all over their bazillion dollar CT machine. Luckily, the feeling goes away just as quickly as it originally hits you – and in about 5 minutes or so, you are feeling pretty much like you were before the lava injection.

So think of me Thursday morning and send all the mental good wishes and warm fuzzies that you can. I hope that I will not dirty the expensive machine.

Then after the CT scan, it is up to the third floor of the Cancer Center and visit Dr. Beck and the most fantastic team of nurses around. One of the nurses will come in and take my blood, and then Caren and I will sit and wait for Dr. Beck. After about 15 minutes, there will be a knock on the door, and in will fly Dr. Beck like a hummingbird on crack. I will fluster him this visit by asking him about his vacation (I will update you as to where he went). Personal questions fluster Dr. Beck, and I like doing that. He will check on the Ghost of Leon and Robespierre (he actually refers to them by their correct names. Then he will begin to pound on my shoulders like football players do before a football game. He really does not pound, but he checks certain nodes at the top of the chest and neck, and he actually tries to get in deep. He will then say that all looks good (we hope), I am free to go, and see ya’ next month.

I will call Dr. Beck’s office on Friday, and they will tell me the results of my tests the day before. If all went well with the tests, we schedule an appointment for December. If there is a problem, we schedule an appointment for the following week. It is a simple system: Monthly visits “GOOD!” Weekly visits “BAD!”

Now, remember that we are on the park bench. I say this, as this entry is getting rather lengthy, and we have not touched on the real health issues that are causing problems. Heck, the cancer stuff is a breeze. The fibromyalgia and arthritis are becoming the big problem.

Over the years, I have developed an amazingly high threshold for pain – at least that is what all the doctors always say. However, the past couple of months have been horrible in the pain department. This particular type of pain is not like a joint hurting here and there. I have been experiencing a type of pain that comes from within and it makes you feel like the bones, joints, muscles, everything hurts with a pain that is always there. Sometimes it hurts so much that it is as if your eyebrows even hurt. On some days, it is manageable. Other days it is horrible. After working and working with my great doctor here in Kokomo, we have found a combination of medicines that seem to make it so that horrible days are becoming rare. The only issue we have been unable to address is the incredible feeling of exhaustion and fatigue that is always with me.

Yet, with all of the going on, I am thankful for my friends and family who keep my spirit up and tolerate me when I am “Mr. Grump Grump” and am not feeling too well. I also should take this moment to beg forgiveness from everyone who has sent an email to me and it goes unanswered. I have good intentions, but within about 10 minutes of messing with email, I am typing with one eye closed and one eye open (like I am now) as Mr. Sandman tries to take hold of me. Be patient with me. Everything will be answered eventually.

I am also most thankful to Caren. We as people often spend so much time focusing on “the patient” if you will, that we forget to remember the person taking care of that patient – the good ol’ CAREGIVER. In this case, it is Caren. She is fantastic. She puts up with me when I “hurt” and hate the world. She knows how to get me to calm down and rest or go to sleep. She gives me hugs when I need them and a good swift kick in the ass when I need that, too. I truly am the lucky one in all of this. It is difficult to put in to words the love I feel for Caren, and I know that just as the daily difficulties of my disease are hard on me, they are often harder on Caren. Caren has a fantastic soul and I do not think I could find a more loving person with whom to spend my life. I must say, I lucked out in the wife department! So, be sure to take the time to thank that important person in your life for all the little things she or he does for you.

And for now, I must admit that Mr. Sandman has won this battle today, and I need to go to sleep.

Until next time (and I promise it will not be a month),

My best!

Glad to Be Back

There are no excuses for not writing and keeping updated, except that I have been busy (aren't we are) and I have been dealing with other health issues.

Right off the bat, I should let you know I had my first monthly check up with Dr. Beck and the Gang at the Indiana University Hospital. It is great. You go to the "Registration Area" and meet with the person who checks you in. She then gives you about 15 barcoded stickers with your name and other information. Anyone you meet with the rest of the day, you give them one of your lovely stickers. I had a chest x-ray done - they took a sticker. I had blood work drawn - they took a sticker. They they told me I was finished. I was heart broken. I still had 13 stickers left to use. I wanted to use them all, but what can you do for "fun" in the hospital? A stress test? EKG? I did consider a sleep study, as they are often in nice, relaxing hotel like rooms, but I figured that might scare Caren if I came home too late. I thought about putting them on the elevators, but that might upset security or the environmental services staff, and they would be able to scan the sticker and no every detail about me from my date of birth to the loss of one of my most intimate friends. So, I just went home - a bit more deflated than when I entered the hospital a few hours earlier.

The doctor's office called Friday to let me know that the tests were perfect, and there was no resurfacing of the cancer. They look for it to appear in a very specific spot in the chest when they look at the x-ray. The blood test is to look look for a certain "marker" in the blood. Before my surgery, the level was 42. One week after the surgery, it was a 2. At my last visit, it was also a 2. You want your level to be a 2, so I was happy.

My next visit to the hospital is in a few weeks. If you want to drive to Indianapolis, wait while I have my tests (takes about an hour and a half) and then hang out in downtown Indy let me know.

Now that I am writing on here again, maybe I will tell you my ordeal with other doctors the past few weeks.

One More Thing to Add to the Summer from Hell!

Everyone,

I have been busy with other things totally unrelated to Leon, and have neglected this blog. Below you will find a letter I sent to a friend, and figured it would fill people in some of the latest adventure in my summer. In essence, my wife's aunt described it best, "Matt, your summer has SUCKED!" I guess she calls them as she sees them.

I also thought that since the blog is really starting to get away from the "Leon" aspect and more about my life, I thought a name change was appropriate.

Here's the update:

My mother passed away in her sleep at about 2:30 yesterday morning. It is such a relief for Caren and me to know that Mom is now at peace. We are not upset, oddly, as the mother I knew left so long ago, and the only thing that remained was a shell of who she once was. I called both of my brothers yesterday morning and let them know (I had warned them last week that this was coming and they needed to prepare themselves (see, I really do have a heart) I figured if I was up at an ungodly hour, so should they (nah, not true, I did it because I wanted them to know). I told them there is no need to come up here – that we will get together at Thanksgiving or Christmas, and celebrate her life then – as she would want. She always thought funeral services were a waste of money, emotion, and flowers (now you know where I get my bizarre sense of humor). I called the mortuary and notified them that they could pick up the body (You may find her obituary at www.ellersmortuary.com, or just clicking HERE). I woke Caren up and told her what happened, and she sat up in bed and let out a great big, “Hurray!” and said that before she went to bed Sunday night and anytime she would wake up in the night, she prayed and then kept sending thoughts to my mother telling her to just let go, and that it was time to move on. Then we freshened up, and went to Cracker Barrel for breakfast!

Cracker Barrel was one of my mother’s favorite places to eat, and over the years, the waiters and waitresses took such good care of her and treated her so well, as the Alzheimer’s became more pronounced. As making decisions began to frustrate her early on, instead of asking her what she wanted, they would simply ask, “Do you want the usual Miss Marilyn?” and she would respond, “Of course you silly.” If we were there in the morning, that meant a child’s order of pancakes with peaches on top and hot chocolate to drink, and if it was lunch or dinner, that meant meatloaf and, of course, hot chocolate. It could be the hottest day in the year, and they knew to bring hot chocolate, and heaven forbid if they forgot the whipped cream. The staff at Cracker Barrel would even cut up my mother’s food when they brought it just to give Caren and me a little five minute respite from taking care of Mom. So it was a fitting place to have breakfast.

The hardest phone call to make when we got home was to my mother’s brother (DUH, my uncle), as while he is the oldest, this now makes him the last one alive from his mom, dad, brother, and sisters. He lost his wife earlier this year, and now his last sibling, so I feel for him greatly. When he married his wife, he converted to Catholicism, and I learned with the burial of my grandmother (a non-Catholic) that it is pretty much a no-no for someone to be cremated in the Catholic religion. There was quite an argument, especially since my grandmother was Lutheran, and my grandmother was not cremated as she desired, but instead was buried. However, my mother had specific instructions spelled out in her Will as to what would or would not take place once she was dead. She specifically said that she was to be cremated, and there was to be no service. So when my Uncle Jack (a man I respect and love dearly) asked me if I had picked out a nice burial plot for his baby sister, I simply said, “Don’t worry, everything is taken care of, Sir.” He was satisfied with that answer and told me, “Good job, my little Rusty” which made me very happy, as I would not like to flat out lie to the man. You know, when I was a kid, I hated to be called “Rusty” by the entire family, and now I sort of miss it.

It is funny, I stayed up all night Sunday night, knowing that she was going to pass during the night. I told Caren earlier during the day on Sunday that I needed to take a nap because I would have to be up early Monday morning making calls because Mom was going to die during the night.

No matter what, I am relieved, and very thankful my mother’s ordeal is now over. She went peacefully, calmly, and free of pain during her sleep, which fittingly I think it should have been. Of course, it still hurts, but I am happy she is now free.

Remember no tears or sad feelings for me, only positive thoughts!

Fever

I am happy to report that my fever has vanished (thank goodness for broad spectrum antibiotics and a wonderful doctor). I am very happy about that, as my doctor was starting to get real frustrated as we were having trouble figuring out what was causing the fever. All we knew was that with the medicine I was taking, I should have no fever at all. She put me on an antibiotic, and the fever is no longer a part of my life.

What is a part of my life is a total lack of energy. Okay, it is not total, but I am finding little things just totally wipe me out. I have even found myself falling asleep at the computer or writing emails with one eye open I am so tired. I have been sleeping fine at night, but naps are becoming even more a part of my regular routine than ever before! Not that I am complaining, I looooooove naps. I love to think that napping is my hobby and I like practicing my hobby whenever I can, but damn, enough is enough.

Of course I could have one of a million other things going on in my body, but I am hoping this is just a drawn out recovery from Leon's death!

Late Night Musings

It is Saturday morning about 2:00 AM, and I am having one of my little bouts of insomnia tonight/this morning/whatever you want to call it. It is funny, I have been extra tired this week, and now that I really want to sleep, I am wide awake. A whole lot of good cutting down my caffeine intake has done me this summer! Grrrrrrr!

My sleep has been quite an issue this week. For some strange reason, I have been unusually tired, and have been sleeping a great deal. On top of that, I started running a fever yesterday, so to make sure nothing bad is going on, I will see the doctor in a few hours at 10:15 (I hope to sleep by then, too). Who knows if all of this is from the surgery or all the other health issues I deal with every day?!?! If I griped about all of them, as you well know, I would have a million different blogs to update, and that is not what I am here to do.

Caren and I had a good week here on the home front. I have to admit, while during the past year I adjusted to having the house all to myself during the day and was pretty much set in my ways with my schedule, I have loved having Caren home this summer. In fact, I really wish she did not have to go back to work in just a couple of weeks. While I have never been a big supporter of the “Start School After Labor Day” movement, I might just have to become a member. Of course, if they are going to push for a later start time for school, I suggest they go all out and start the “Start School After Halloween” movement.

Caren and I both made the trip to Lebanon, Indiana, to see my mother at the nursing home on Thursday. Alzheimer’s continues to take its toll on Mom. I am certain that Mom did not recognize either one of us, but she did become slightly more aware of things, I think, while we were there. We met with her medical team and other people associated with her care, and we began to discuss different options for hospice care and her end of life wishes, as Mom has begun the downward progression so often associated with Alzheimer’s. I am so thankful that we did sit down with Mom when she first came to live with us and discuss her wishes for medical care and her final days. If you have not done it yet with your own parents, I recommend you do so, as it does not necessarily make this time any easier, it at least gives you the peace of mind to know that you are doing what they wanted. Sadly, this transitional period from Mom’s current state to the great beyond can take many, many months.

Not to shift gears to quickly, but I am kicking around the idea of getting some corporate sponsors and starting a Testicular Cancer Awareness campaign. I thought I might take the Ghost of Leon and my one remaining testicle and hit the road and take an across the country road trip singing the praises of making sure men give themselves monthly self-exams as well as a general testicular cancer awareness campaign. Of course, I would say this is many months off, as I have never taken on anything like this, and really do not have any idea where to begin. If any of you have ever started your own charity before, let me know!

While this type of cancer only affects about 8,000 Americans every year, it is one of the more highly curable forms of cancer out there. Of course, my big goal is to have some car company (maybe Chrysler since I live in Kokomo and there are all the huge Chrysler plants just down the street) donate a vehicle (and gas) for “the cause” and I will call it The Testicle Spectacle.

I figure I will have a few obstacles to overcome if my idea is ever to see the light of day. For instance, if you are getting corporate sponsors for something like this, whom do you get? I mean, who wants to be the company associated with testicular cancer? It is fashionable t0 be a sponsor for breast cancer awareness – and rightly so, as the need to fund breast cancer awareness, treatment, and research is great. Nevertheless, who wants to be associated with testicles? Admittedly, this notion is humorous, but I am very serious here.

Me? I could use my own humor to educate and get people to deal with the issue, and I think you all would agree with that (if anyone still reads this blog). However, would the corporate big wigs of some company want to be associated with testicles? Make all the ball jokes you want – trust me, I have thought of them all during the past month, but I am not so sure corporate America wants to be associated with testicles – unless it is under the auspices of say, The Lance Armstrong Association. In addition, I do not see some big telethon on one of the television networks anytime soon, as well.

All of this is in the planning stages, but my desire is serious. Heck, I haven’t even researched how to become a non-profit organization yet, as I figure there is probably at least one form to fill out or something (more like 500,000 I am sure). And more importantly, I should probably discuss this with my wife, too. I think I should do that now in the “planning” stage instead of one evening over dinner looking at her and saying, “Oh, by the way, I will be leaving for a 50 day road trip tomorrow, do I have enough clean clothes?” I believe that would be what we call, “BAD!”

I will keep you updated on the progress, and as always, I welcome ideas and suggestions. Feel free to contact me at rickett@educationalfutures.org. I figure the more ideas, the better!

The Road to Recovery is Paved with Good Pills

In case you don't want to read paragraphs and paragraphs of my mumblings, I continue to be on the mend and doing quite well. The incision has healed nicely, so I will still look mighty sharp on the beach in my bright orange Speedo, and the swelling continues to go down - it is slow, but it is going down.

Caren has been wonderful during my recovery. Me, I expected that about three days after surgery I would be up and around and ready to face the world. Caren, however reminded me that recovery from this particular surgery can be anywhere from 2 to 4 weeks and even longer. Not wanting to be in the "average" or "typical" categories, I decided to mark MY recovery in DAYS rather than WEEKS! On Thursday after my surgery, I was up and around and ready to face the world. However, my BODY didn't know this, so that caused some problems. Let me be the first to tell you, if you every have a battle with your body, the body will win. Damn body! Of course, the body's failure to cooperate also proved Caren's point about two to four weeks or longer. I should just accept the notion that the wife is always correct, and usually I do, but I like to test the limits from time to time only to reach the same conclusion - CAREN IS RIGHT!

This week, this weird thing known as "pain" paid me a visit. People who know me, know I have an extremely high level of pain. In fact, I argue a bit with my doctors from time to time when they tell me something should hurt, and I tell them it does not hurt. The pain this week was also much more than I experienced after surgery. As I met with Dr. Moyer (my amazing doctor who keeps track of everything on me and my health) she asked me to describe the pain. I told her that was no problem, as the pain was "comparable to pushing my left hip in to a running chainsaw!" She responded without even blinking an eye and said, "Ahh, yes. Post operative pain is a wonderful thing, isn't it! Very different than the usual pain you are used to feeling."

After some discussion, she took out the wonderful BLUE prescription pad. The blue pad is much better than the white pad, as prescriptions written on the blue pad are extra gooooood, and require you to show your driver's license when you pick up the prescription. Over the years, I have taken almost every pill out there sans Viagra, so I was surprised with the doctor prescribed a new medicine for me, the lovely Percocet. Even better, when I picked up the Percocet at the pharmacy, it came in perhaps the largest medicine bottle I have ever seen in my life.



Caren makes sure I take my Percocet right on schedule, so believe me, you are lucky that I am even conscious to type this in to the computer. Really, I type at the computer now and fall asleep during the whole thing - it is sort of like when you were at church as a kid (maybe even now) and you start to doze of and then you jerk awake all of a sudden? Well, welcome to my world.

As you can see, as long as I am medicated, I am happy. I think Caren likes me more medicated, as I talk a lot less, which allows for her to get more of her work for school completed.

My best to everyone!

The Verdict is In

Thursday was quite a day. Caren and I left for the IU Hospital at about 11:00 - stopping for our "drive drinks" of a large Diet Coke for Caren, and a BK Iced Mocha Java for me. We did not realize at the time that we would end up at the hospital for most of the afternoon.

We met with Dr. Beck at 1:00. About 24 hours earlier, Leon's incision started bleeding a little - no other problem at all during the whole time since surgery, but since I was going to the doctor, the Ghost of Leon had to make his presence known. As soon as I dropped my boxers (a nice blue number by the way), Dr. Beck went, "Oh My!" and grabbed a box of gauze bandages. He took off our gauze bandage, squeezed the incision, told us that is was just blood and there was no infection, and we should just let it be. He and Caren bandaged me up with a gauze bandage about an inch thick and that was that, and on to other things. Dr. Beck did grab some big boxes of gauze, handed them to Caren, and said, "Shove these in your bag and sneak them out of here. The nurses hate it when I do this with the supplies, so hide 'em good!" Then it was time to address the real issue of our visit.

Dr. Beck said the pathology report from Leon’s autopsy was as good as one of those things can be. In men my age (41), Leon is usually made up almost exclusively of a very “bad” type of cell and just a little bit of “good cells.” It turns out that Leon was just the opposite – 90% good cells and 10% bad cells. Of course, the word “good” is relative. Good is bad, but just a little, teeny-tiny bit. He said this is a good indication that things are in Stage I. However, he cautioned, we would not know for certain until I had my blood test followed by the CT scan. So some of my blood was taken, then it was off to have the CT scan.

We had to be there at 2:00 to start the drinking of the contrast solution. The contrast solution was not as bad as I expected. It was sort of like fruit punch with a real bad aspartame aftertaste – and I drank a fourth of the GIGANTIC cup every half hour. Then off to have the CT scan. That was fine until they injected me with the radioactive dye and started sliding me through the big tube (I believe that is the medical term for the CT machine, I am not certain). When they began injecting it, a very hot feeling went through my body. After about a minute of that, I thought I was going to be ill, but just as I thought I was going to lose it – the feeling went away, and that was it. Whew! I had a vision of this multi-million dollar machine covered with my Big Gulp sized remnants of bright red Kool-Aid! What sort of freaked me out and fascinated me at the same time was that just as quickly as the hot feeling went through my body, it was gone, and I felt totally fine! Ahhh, the wonders of nuclear medicine! That was it, and Caren and I were free to go.

We managed to time things perfectly to hit downtown Indianapolis traffic right at 5:02 PM, and the rush hour crush was on! We made it through downtown Indy on Meridian Street. For people unfamiliar with Indianapolis, Meridian was probably designed originally for one lane of traffic each way with lots of room to spare. Now it has two lanes of traffic each way and absolutely no room to spare. So you are zipping through traffic going 45 M.P.H. packed like sardines. When had no problems (primarily because I was driving and my afternoon medication was kicking in), and when we reached the northern most point of Indy, we stopped at Don Pablo’s because we were, as Caren said, "So hungry she was about to be Miss Cranky Pants." If she was close to being Miss Cranky Pants, that meant I was close to being Mr. Grumpy Grump, so Miss Cranky Pants and Mr. Grumpy Grump went in, ordered our drinks, and as soon as the tortilla chips arrived, we devoured them like a pit bull on a slow moving mailman. Caren ordered her usual spicy Chicken Caesar salad and I ordered the left side of the menu. Actually since I know my band teacher friend will read this, I need to say that I ordered "El Conquistador!" Having written that, I should now apologize to his wife, as he will now walk around the house saying, "El Conquistador!" repeatedly in a slightly cute but oddly Rain Man-ish way. After a wonderful dinner, we headed home - with much less traffic on the roads I might add.

Now all we had to do was wait for the results of the tests.

While we would have liked Dr. Beck to call at 7:01 in the morning, we knew he had surgery, and I had a conference call with the U.S. Department of Education from 10:00 to 12:00, so Dr. Beck was accommodating and worked with our schedule and he called Friday afternoon.

And, just as he said he would, Dr. Beck called with the results of all my tests Friday afternoon. My blood work indicated that the level of a certain marker (a particular protein level that they watch) had gone from 40 with Leon in me to a 2 with Leon gone. This was good news. Then he went on to tell me that the lymph nodes on my left side (Leon's side) were abnormally large. He said that usually this is bad, but after consulting with his pals at the hospital (his words, not mine) they decided that I just had unusually large lymph nodes for some reason. Of course, I hope Dr. Beck's pals were doctors and not the cleaning crew or the person running the coffee kiosk or something.

So what does this all mean?

It means that I am what is known as Clinical Stage I. For now, the removal of Leon got rid of all the cancer. For the next year, I will go to the IU Hospital each month and have a chest x-ray, CT scan, blood work, and meet with Dr. Beck. Then after the first year, I will go down to IU Hospital for the same battery of tests, only every other month or so. Once I make it through the two years, we will decide how often I go for tests after that. The reason for all of this is that out of 100 patients, 70 of them will have no other relapse - ever - and, obviously, 30 of them will. Of the 30 who do relapse, 28 of them will relapse within the first two years after surgery, and the majority of those will be during the first year. That is why Dr. Beck will monitor me closely over the next few years.

While not 100% perfect news, it is pretty darn close to perfect. One thing that made this very easy to go through, was the support I received from all of you. That made these past few weeks not so bonkers.

Do not think that this will be last of my musings here. I have rather liked doing this. Maybe I will have to come up with a new name (feel free to send in your submissions to rickett@educationalfutures.org) - and just write about what is going on in my life, not that many people would care. Nevertheless, I guarantee there will be a health update once a month, as I think we all owe it to Leon!

Scheduling Desk

Have you ever tried to schedule a CT scan, blood work, and an appointment with your doctor all on the same day? Let me tell you, it is not an easy task - and I didn't even have to do it. Dr. Beck's secretary, Trish, is an amazing woman, and she has scheduled me three times for these tests, and has finally found one when I am not reading grants for the US Department of Education.

Caren and I head off to IU Hospital on Thursday. Usually, you have your tests done and meet with the doctor. However, Dr. Beck really wants to meet with me, so we will meet with him at 1:00, and then I go and drink the stuff for my CT scan (I have a feeling it will NOT taste like a chocolate shake). Then the stuff flows through my body doing all sorts of unusual things (I wonder if I will GLOW when finished?) and then I have the CT scan later that afternoon. As the gigantic "device" is whirling around me, I promise not to start shouting, "WHEEEEEEEEEEEEEEEEE!!!" After that, we are free to go. However, if someone from the Psych Department wanders by, it could be that Caren will be the only one "free to go."

Dr. Beck will call on Friday with the results. The purpose of these results is to find out if the cancer has spread beyond the confines of Leon's former residence. As soon as we hear something, we will pass the news along.

In other news, I ventured beyond the confines of my residence today for the first time since the operation. I was a big brave boy (okay, Caren went with me but I got to drive!) and went to the post office, the bank, and to Sonic for two Route 44 Diet Cherry Limeades (one of our favorites, and they have to be Route 44s - anything else is for wimps). I have to be honest, I was worn out when I got home, and the Ghost of Leon was hurting some.

It was a good practice run for Thursday, as the IU Hospital is finishing up a huge construction project (a new cancer center) and to get to Dr. Beck's office you have to make quite a hike. It is an unusual trek through the catacombs of the hospital as it involves taking the "special" elevator to the basement and then following the yellow signs. The basement of a hospital is, shall we say, interesting. Of course, the way I am walking, I will have to make sure I have a good 20 minutes to get to my appointment or get a wheelchair and make Caren push with me singing the theme to The Love Boat at the top of my lungs. Jack Jones wrote and sang the original theme, but no one sings it better than Charro. Click here to find out!

Ghost of Leon

I hope this finds all of you doing well. Caren and I are just fine and I can say we are both surviving my recuperation wonderfully. Recovery and recuperation has actually progressed much better than either of us expected.

The incision and what I am now calling “The Ghost of Leon”
both hurt some early on, but not near as much as I expected. I was honestly expecting to be in bed and barely able to move for three or four days. There has been none of that. The only bothersome side effect from the surgery (except for now only having one ball) is the incredible sleepiness that hits on occasion.

I should note that the sleepiness does not always hit when you want it to. For instance, when fireworks are still going off above your house from parts unknown at 1:45 AM after a night of Fourth of July celebrations – there is no attack of sleepiness! I have decided that the best way to solve the Iraq War is to send my neighbors living a few doors down on the other side of our fence to Iraq with a cargo plane full of fireworks of their choosing. I was convinced that we were being invaded at one point last night from all the noise. Tripod, our three-legged cat, chose not to sleep with Caren last night, but chose to huddle in her walk-in closet as his way of avoiding shell shock. If the amount of fireworks exploded over our house is any indication as to the state of the American Economy, I can say the economy is alive and well, at least in Kokomo, Indiana.

Dr. Beck called on Thursday and said that he received the report from pathology on Leon’s autopsy. He said it was just as expected – Leon was full of bad, evil, cancer cells. Dr. Beck believes that he removed all the cancerous cells and that things have not spread. He stressed that this was not a guarantee, and would not know for certain until I have my follow-up Blood Protein Test and an MRI. Once he sees the results of those, we will know the stage of my cancer. Those tests will take place July 14 or July 15. Of course, I will let you know the results of those tests once we know.

Again, all here is fine. The incision is almost totally healed, there is virtually no pain, and only some puffiness remains in certain areas.

Recovery

I will write more later, but here it is Thursday, and I can tell you that I feel wonderful. I thought I would be in much more pain than I am. It really is a minor pain. Except for some swelling (My, oh, my, the pictures I could post) and being extremely tired, I feel no different. Of course when I wear my thongs and g-strings now, they no longer fit and they just don't look right for some odd reason. I took them all out of the drawer and fashioned them in to a lovely toy for the cats.

Uniball is Born!!!

It is with great sadness that I announce the departure of the beloved Leon from this earth at approximately 8:00 AM, Monday June 30, 2008. We are relieved that he has gone to a better place, and we know that this was all for the better.

Surgery started at about 7:30, and I woke up in the Surgery Recovery Room at 9:30. From a health prospective, things went wonderfully, and the current prognosis is good, if not damn good. I go back to see Dr. Beck next week for some more tests and then we will know for certain. I am truly impressed by his team and the care everyone gave to me while at IU Hospital.

However, from a case management perspective, my case was laughable. Let’s just say, at one point during the day, I was admitted to the hospital for approximately two hours – had my own room and everything. I am certain Caren and my mother-in-law Marilyn both have rather vivid and scathing thoughts as to IU Hospital’s version of communication. But most importantly, I cannot emphasize how impressed all of us were with Dr. Beck, his resident (whose name I forget, but wrote LEON in big letters on my left hip to emphasize who was being removed, Leon on the left or Robespierre on the right), his staff in surgery, and the nurses and staff of the Surgery Recovery Room for a brilliantly entertaining morning and afternoon. True, I did most of the entertaining, but I don’t think any recovery unit in all of these United States laughed more Monday than we all laughed.

Obviously, since I am up, typing, and using the computer, my recovery goes well. My discomfort can best described as being hit by a Boeing 747 in the groin. Okay, that is a total and outright lie – I admit it. You know those little airplanes that are made of balsa wood and fly by rubber band power? My discomfort can best be described as being hit by one of those planes in the hip. Okay, that is a lie, as well. You know the rubber band that is in the balsa wood plane? My discomfort can best be described as being hit in the groin with a rubber band – and that is pretty much the truth. Yes, bending and moving bring some discomfort, but things are really much better than expected, as I really imagined (hoped) I would be flying in the clouds doped up on a myriad of America’s finest legal pain medications available to modern man.

I do have to take it easy, and my lovely wife Caren loves her new role as nurse. Caren as a nurse is a cross between Nurse Ratched from ­One Flew Over the Cuckoo’s Nest and Shirley McClain from Terms of Endearment. Some of you might be shocked that I am describing my wife in this manner. There is no reason to be shocked at all. She is honored to be described in these terms - especially after her experience in the waiting room at the hospital today. Let’s just say they almost experienced Shirley McClain (the mean one yelling at the nurses in Terms of Endearment, not the crazy one recalling past lives).

In the meantime, Caren and I thank all of you for you kind thoughts and prayers. I will keep you updated on how things are going.

By the way, I did learn a few things about hospitals that I should probably pass on:

• When waking up in the Surgery Recovery Room, do not shoot straight up in bed and yell at the top of your lungs, “I’MMMMMMMMMM BAAAAAAAAAAAAAAAAAAAACK!”
• Doing the above, freaks the nurses out, and can (so I have been told) cause everyone to rush to some elderly woman in Bed #8 and start yelling “CLEAR!” and then making her jump in bed (whatever that was all about).
• And finally, as you are being transferred to your room and you are being pushed through the hallways, do not point at the visitors, doctors, and staff and yell, “I see dead people!”

T Minus 14 Hours and Counting

Just had my last meal before surgery - Caren made a super homemade pizza - and I downed it with about 55 gallons of water and some pop since I don't get to have any liquids either.

Admittedly, I am a little anxious (who wouldn't be), but I feel positive about how things will go. Leon is not too thrilled with the whole situation, but he will get over it - heck, he doesn't have much of a choice now, does he?

We will hit the IU Hospital pretty early, check in, and then in a couple of hours I will be on the table sleeping like a babe. Then it is off to recovery for three or four hours, and then Caren and I will head home. With any luck, Caren will not have to drive home during rush hour in Indianapolis. If she does, she has her Mario Andretti hat and will be ready to take on anyone. Pray to God no "ROAD RAGE" kicks in, as you don't want to piss Caren off while she is driving!

Thanks for all the notes and messages of good health and best wishes. I will update everyone here as soon as I am able to let you know that I am fine (maybe Tuesday morning?). Until then, remember what Caren and I often say, "If I don't hear from you, I will assume no news is good news."

A Poem

Anon E. Moose, a friend from Iowa, sent this poem to me as a way to cheer me up as her town begins to deal with the horrendous task of cleaning up from the Iowa floods.

There once was a cancer named Dion
Who attacked Matt's friend Leon
On Leon he hopped
So he had to be stopped
Dion will be gone and Matt will move on

Matt's prognosis is great
Caren's help is first rate
Matt thinks his doctors are tops
Soon no more raindrops
And Matt and Caren will celebrate

Whew the rain will soon end
Matt will be on the mend
This bad poem will be done.
Matt and Caren have won!
And Matt will cheer with his friends!

Anon E. Moose will be the first to admit the poem is not stellar, but in my book it gets the Pulitzer.

In Good Company

Who knew I was in such great company with the whole testicular cancer thing? It seems that Hsing-Hsing (pictured) was diagnosed with testicular cancer and underwent surgery in 1997. If you are not familiar with Hsing-Hsing, he is the mate of the slightly more famous Ling-Ling - one time panda bears at the National Zoo. Hsing-Hsing lived out a normal and happy life after his surgery until his death in 1999. For those of you unfamiliar with the two pandas, they came to the United States from the Chinese government in 1972 as a way to commemorate Nixon's visit.

The Waiting Game

The waiting for the surgery that keeps getting moved is, at best, a little tedious. The surgery now is set for Monday, June 30, at 7:30 AM. Luckily, I believe, I am taking the wait better than Leon – for obvious reasons. I spoke to a friend of mine from Ohio in the whole doctor (I think I can call her that and not upset the AMA) and hospital business, and she said scheduling surgery can often be a major pain in the neck, so I shouldn’t worry about it, and that the doctor wants to get me in there as much as I want to get it done.

However, the wait eats away at you just a little, but then you get your act together and go on with what needs to be done.

Speaking of what needs to be done . . . Caren and I have used this event to get some things taken care of that we should have taken care of a long time ago. I was always ready to do it, but Caren didn’t want to do it so much, but she said, “It is time for me to put on my Big Girl pants and do this!” We sat down and each made a will, did Power of Attorney, and did a Medical Power of Attorney. If you have not done all of these yet, do so. It doesn’t take much time, and is easy to do. Admittedly, I am not expecting anything drastic to happen, but I just like to have all my bases covered. As Caren says on occasion, “Being a grown up sucks!”

You have to admit, she is kind of right.

Medicine at Its Best

Some of you have emailed and asked how bad my lump is. I was able to get a copy of my ultrasound from Dr. Beck. Here is the picture he gave me that best represents Leon!

A Matter of Perspective

At times, it is difficult to be calm, cool, and collected. I received a phone call a few minutes before 5:00 this afternoon from Trish, Dr. Beck’s secretary. Dr. Beck wanted to cancel my surgery on Monday. Seems he forgot to tell me on Tuesday to quit taking my Plavix (a blood thinner) so I have been taking it all this week, not knowing the wiser. Caren even confirmed that he did not tell me to quit taking it, as she sat there with her trusty note pad and bright pink Sharpie taking notes while Dr. Beck acted like a hummingbird on crack! Turns out this would have caused some major issues on Monday. Not wanting me to “bleed out” on the table on Monday, he pulled me from the surgery schedule, and it looks like Friday, June 27, will be Leon’s last day with us. Me? I am a little irked. Leon, well, all I can say he is no longer singing the Blues.

Part of me is frustrated, as I mentally had my mind prepared for Monday. I mean I know that four days is not going to make a difference at all in the whole scheme of things, but still, when you have it in your head the battle for your very life begins on a certain day, having that date suddenly changed is a bit unnerving.

So, I begin the battle for my life on Friday, June 27, 2008! Now mind you, Trish is going to call on Monday to let me know if she was able to get that date confirmed, so who knows by Monday what the actual date might be.

All in all, it doesn’t really matter. I’m not going anywhere. The cancer is not going anywhere. And most importantly, Leon is not going anywhere.

With that said, I have to say I met a woman a little bit more than a week ago who has helped me put things in perspective. As some of you know, I occasionally read grant proposals for the United States Department of Education. It is a fascinating experience just to go through the whole process. I receive a box of about 12 proposals. I read them and then I score them in certain categories. Then I get online and enter my scores and comments in the D.O.E.’s program that manages all of their grants and proposals. During all of this, I work with one or two other people on my “panel” reviewing the same proposals and then we have an impartial panel moderator who acts as babysitter to make sure we talk things out if our scores differ drastically, and the moderator also handles all the paperwork and logistics of the whole review process. Okay, I am really digressing here.

Anyway, this past review (finished this morning about 10:00) I worked with Karen, a superintendent from Iowa. Karen’s school district is located down stream to the south and to the west of Cedar Rapids. One day before getting together for a conference call, Karen had been out sandbagging the downtown area. Before the next conference call, she had spent the morning cooking hundreds and hundreds of eggs for the National Guard helping with the sandbagging and flood control. Now mind you, the National Guard had already taken over one of her school’s for their “headquarters” and staging area. Karen even met for a conference call while the town and National Guard were sandbagging one of her schools! The waters are NOT expected to crest in her area until Sunday – and the rain they are expected to get today and tomorrow will not help. But in all of this, Karen was extra worried about me. While I was amazed she was still doing these grant reviews, she was amazed I was doing the grant reviews.

It is funny how a little perspective can alter your own reality.

The History: For Those Who Don't Know

Let me begin by saying that there is no funny or cute e-card that says, “Hey, I have cancer!” Believe me, I have looked. So this will have to do, and by the way, “Hey, I have cancer!”

About two weeks ago I found a marble sized lump and went to my doctor on the following Monday. She scheduled an ultrasound for me on Thursday of last week, and from that, all indications pointed toward testicular cancer. Caren and I went to the Indiana University Hospital in Indianapolis this afternoon, and the diagnosis was confirmed.

Caren and I were very impressed with the doctors at IU. I am working with the same team of doctors who treated Lance Armstrong, so I feel like I am in good hands. Dr. Beck (my lead doctor in all of this) sent me for a bunch of blood tests (looking for certain markers in the blood to help indicate what type of mass he is dealing with) and then I had an EKG and a chest x-ray (for the anesthesiologist), as surgery is required. My surgery is scheduled for early Monday morning.

The surgery is outpatient surgery. Dr. Beck will make a two to four inch incision on my left hip - a little bit lower than where my belt rests – then go down and remove Leon (what I have named my left testicle) through the incision. Then Leon goes off to pathology, and I go home.

Once the pathologists have a chance to look at Leon and dissect him, Caren and I will go back to the IU Hospital for more tests (most likely an MRI and CT scan) to see how far things have progressed, to determine what stage the cancer is, and to decide if chemotherapy and radiation therapy are necessary (at this time, all indications are that they will most likely be needed).

So there things are in a nutshell. Dr. Beck is great, and he has a fantastic sense of humor (he even began to refer to things as “Leon”). There is no “good” cancer, but testicular cancer and its treatment has a 95%-98% success rate, so Caren and I are keeping our hopes up that I fall in that category.

Reasoning

I am doing this as a way to keep all of you informed as to what is going on with me as I go through this whole cancer thing. This way, I can write things once, and not have to call or email so many of you. Don't be offended. I am just doing it this way, as I think I might have some days ahead when I don't feel like writing or talking to anyone.

In all honesty, it is also a way for me to deal with what I am feeling inside. If I said I wasn't scared, worried, or nervous, that would be a lie. Those feelings do creep in to my thoughts from time to time, but I am amazed at how rarely they stay. For the most part, I just deal with it and take things one day at a time. I have already realized that it will do absolutely no good to worry about it, get mad about it, or feel sorry for myself. None of that will make the cancer go away.

I hope my future writings give you some laughs - it is laughter and a great sense of humor that I know is going to get me through this ordeal. Well, that and Caren, and all the good thoughts and prayers I get from all of you.

I have already realized that it will do absolutely no good to worry about it, get mad about it, or feel sorry for myself. None of that will make the cancer go away.

What will make the cancer go away is the support and love I will get from all of you.