The All-Star Break

I was talking to my massage therapist the other day (yes, I have a wonderful massage therapist, Heather, who works with my chiropractor whom I visit twice a week. The treatments have really helped, I believe, with my side effects to my chemo treatments. Thank you Dr. Tracy). Anyway, Heather is a big White Sox fan and when I told her that I had completed half of my treatments (6 of 12), she said, "So you're at the All-Star break," referring to the mid-season break baseball takes for the All-Star game. Well, that is certainly one way to look at it.

Being halfway done reminds me of something I heard years ago. It's about a guy who was standing on the shore and decided to swim to a distant island. He started out and made it about halfway before he decided he couldn't make it so he swam back to the shore. The point is from my perspective, if I've made it through half of this, I can make it through another half until this thing is done.

But Cyndy and I have talked and are leaning in this direction on a choice I hope we don't have to make again. If after this is all done, within two years, the exact same scenario that I have just dealt with happens again (new cancer detected, is completely removed by my wonderful surgeon, and my oncologist gives me the option of no chemo treatment, though he highly discourages that choice), I just might say, no, I don't want chemo again. I would continue to go through all the testing that I do to make sure nothing is developing but there is a quality of life issue that says to me at this time of my life, I don't want to surrender another 6 months to chemo treatments and the terrible things that brings about it if I don't have to. But like I said, I sincerely hope I never need to make that decision again. And I hope that because of the decision I did make this time to have the chemo helps to prevent the need to make that decision again in the future.

Treatment #7 is Monday. I would appreciate your thoughts and prayers to help me make it through this "on" week for the 22nd time. Thanks and God Bless You.

Just When I Was Starting To Feel Better

Well, it's the day before treatment #5 (of 12). Some of the side effects lasted a little longer this time so it took well into my "off" week before I started feeling any better. Again, even now I don't feel "great" or even "fine" (my response to the "How are you?" question is usually "I'm hanging in there," or "I'm managing."). This is about the best I can expect to feel. Though I know side effects can be cumulative, I'm hoping that my body adjusts more to them so that I can at least return to the level I'm currently at by the end of each cycle. I thought I would follow my wife Cyndy's lead and make this blog a little more educational. Now unless you have had cancer and chemotherapy treatment (and hopefully none of you out there have), the only side effect you may know of from chemotherapy is hair loss. Now there are lots of different chemo drugs out there and they each have their own side effects so it's not like they're all the same. But I think most chemo patients can relate to the fact that they are dealing with unpleasant and undesired side effects, whatever they may be. You can only hope and expect that the drugs are otherwise doing their job of killing cancer cells. Anyway, I thought it might be educational if I shared what I have to deal with each cycle this time around. This treatment is a little different than the last time, when I had two of the same drugs but a different third drug, and did not have two of the other other drugs with which I am currently being treated. I get 4 different drugs each cycle. I wrote down a list of all of the side effects of what I have had to deal with just so you have an idea of what it's like. I hasten to add I do NOT have all of these effects all of the time during every cycle. But over the course of my treatment, I have had to deal with all of these. Here they are:

• Chest pain (now every Tuesday after treatment. The doctors get a little panicky over this and want me to see a cardiologist because they think it's heart-related. I disagree, as I previously passed a heart test for this with flying colors. I think it may be either muscle or nerve-related.)


• Hiccups (every Tuesday - they tend to precede the chest pain)


• Extra solid stool (as one with a colostomy bag, I won't even begin to explain the issues this can cause or the problems I have had. Suffice it say I have survived them all.)


• Bloody nose (not dripping, but it bleeds internally in my nostrils and then dries. It's a mess when I blow my nose to clear all the mucus - have stained several towels just wiping my face off.)


• Bloody stoma (only happened once and dripped all over the shower. Internal bleeding, including my nose, is one of the effects of one of the drugs so I am very careful about this.)


• Frequent headaches (not migranes or anything and normally some Tylenol takes care of it. But early on I was getting them 3-4 times a day and I rarely get headaches. However, since that time I have been getting chiropractic treatments twice a week and my headaches have significantly reduced and I am crediting that treatment for the improvement.)


• Loss of equilibrium (only happened once, right after a treatment and may be related to the headaches, I don't know. The nurse didn't want to let me drive home that day, as she saw stumbling around after getting out of my chair like a drunken sailor on shore leave. I just said I'll be all right once I sit down and I do drive sitting down. Cyndy helped me to my car and I made it home without incident. I wobbled inside and stayed still as much as possible the rest of the evening. Next day I was OK and there's been no recurrence since.)


• Constant ringing in my ears (ever since the above equilibrium incident. It hasn't gone away. I will wait until several weeks after my last treatment to see if this stays with me or goes away with the end of my treatments. If it stays, then I'll look into it more.)


• Loss of appetite in my "on" week (this round of chemo does that to me. I tend to lose weight that week, but despite my best efforts, it tends to return in my "off" week. Very frustrating. I wonder if there are physiological reasons why, such as lower metabolism and/or water retention. In searches I have noted that in some drugs that can happen.)


• Thinning of hair (yes, it's finally happening. Though hair loss was one of my first go-round potential symptoms, I never lost any hair. Not so fortunate this time. I'm losing hair every day, or at least every day I shampoo. It's thinning slowly so I'm wondering which will outlast which - will my hair outlast the chemo or vice versa?)


• Weakening of voice (this also happened to a co-worker cancer patient. As one who has always had a strong voice, this is more than a little frustrating. It's kind of like laryngitis but I can be heard and it doesn't hurt. It tends to regain some strength during my "off" week.)


• Nausea (I have medication for this which which normally takes care of it. It only happens in the "On" week. I keep a big bowl at work in case it's needed. It has been needed at home.)


• Overall weakness (this is not a time for me to compete in any weightlifting events. My strength gets easily sapped.)


• Weaker stamina (related to the weakness in strength is a lower stamina. I'm a big walker but lately when I've tried, I can't go very far without getting exhausted. Even getting ready in the morning takes a lot out of me, one reason I now dislike mornings.)


• Regular stuffiness and sneezing (the chemo kills your white blood cells so my resistance is down in terms of me fighting off cold germs and the like. So I get a lot of stuffy noses, sniff a lot, and have to blow my nose often, though I'm careful because of the bleeding issue.)


• A hard-to-categorize "overall-I-don't-feel-very-good" feeling (how good would you feel if you had all of these symptoms over a short period of time? Again my "I'm feeling the best I can feel" attitude has a significantly lower expectation level now.

Now a skeptic might ask, "How do you know all of these have been caused by the chemo?" A valid question but "Elementary, my dear Watson. Just logical deductions." I have now gone through 19 rounds of chemo from the start of all this. Before any of this started, I had none of the above symptoms (OK, I sniffed occasionally and had a headache once in awhile, but not every day). Then I take the drugs and now I get these symptoms. And during my "off" week, with the exception of the ear ringing (which I will keep an eye on), all of these symptoms go away, only to return with the next treatment. So based upon these observations, I'm just saying that there's a correlation. Oh, and also, the listed side effects for the drugs I'm on include many of the things I'm experiencing and the less frequent ones are still possible, as I will attest.

I am fortunate that only two of the above side effects (chest pain and headaches) are painful in any way. All of the others are primarily annoyances. So from that perspective, I know I am quite fortunate compared to many chemo patients. If I lose all my hair, I lose my hair. I know it will grow back (I have great "hair' genes). I don't list all of these symptoms to complain about my plight or even to elicit sympathy. I just wanted to share that as a cancer patient on chemo treatment, this is what I personally have to deal with in my fight against cancer and insuring that all cancer within me is eliminated. I have 16 weeks to go so this is far from over, but I know I'll make it. I just have to be patient

One other thing. At the beginning I was reading the likely and the less likely side effects of all the drugs I'm on and one of them side there was a 5% chance of death. I read that and went "Whoa. You mean something that I'm voluntarily having put in my has a 1 in 20 chance of killing me?" Needless to say that caused some initial concern, but I have certainly seen no evidence that it is physically affecting me in any "long-term" way (and death is rather "long term"). I think I started this process relatively young enough and healthy enough to fight that off.

Thank you for reading this and hopefully you learned something or at least got a little insight into what I go through. Maybe you know of someone who is battling this and this might give you a little idea of what they're going through, rather than just general "unpleasantness." I wouldn't wish this on anybody and no one will be happier than me when it's over (perhaps Cyndy but it will be close). Just keep me in your thoughts and prayers and God Bless You.

The Elephant in the Middle of the Room

I remember being a newlywed husband before we had any children. We had a number of couple friends who were parents of young or baby children and it seemed like whenever we got together with any of them, all they would talk about is their children. "Today little so-and-so rolled over for the first time." "He said his first word today - I think he said 'Da-da'". "Our little so-and-so is so smart. She's only 6 and already reading at a 4th grade level." Etc., etc., etc. You've no doubt heard many of these yourselves from others. Anyway I remember thinking, "Because this is so annoying to me, once I'm a parent, I won't dominate conversations with others with discussion of the lives and actions of my children." Then of course we had children and what happened? Our conversations with others became dominated with discussion of the lives and actions of my children. The best laid plans of mice and men. Along the same lines and around the same time, I remember that it seemed like whenever I talked with an "older" person (say 50+), they couldn't say anything without relating their most recent physical ailment situation. If you remember the scene in "16 Candles" when the Molly Ringwald character runs into her grandparents in her room and they begin simultaneously relating all of their current physical issues, then you can understand this. I would innocently ask an older person at church or somewhere, "So, how are you doing?" and boy, would I get an answer! After 5 minutes of hearing of their heart palpatations, their 16 medications they are currently on, joint pain when they walk, how Medicare doesn't cover certain things, etc., I would walk away from them thinking two things: (1) I wish them well with their ills and will pray for their recovery, and (2) when I'm that age and start having health issues, I certainly won't bore others with stories of my situation. Ah, the "wisdom" of youth. You think you know everything and you really know nothing because you're not old enough to have perspective on life. Whether lambasting new parents for sharing endless stories of their kids (and the same goes for childless couples with stories of their pets) or older people who delineate all of their physical ailments to you, the point that is missed here is that these issues have in essence become these peoples' lives. They are the "Elephant in the Middle of the Room" - that is, it is the inescapable topic that cannot be ignored. When you first become a parent, it seems like everything you do revolves (and rightly so) around your child. And as you age and start to physically break down, everything you do revolves around dealing with your ailments and trying to get as healthy as you can again - and rightly so to that as well. I hope that people who converse with new parents or ailing older people take that into consideration, at least certainly better than I did at a younger age. This past March 24 marked the 2 year anniversary of the diagnosis of my rectal cancer. To relate much of the last two years of my life without mentioning the effects of cancer upon me would be like Mrs. Lincoln telling friends about that night at Ford Theatre without mentioning what happened to her husband. I say this because much of what I write relates in some way to the cancer topic: what I'm going through, what it's like, how I'm dealing with it, how it affected what I'm otherwise doing, or encouraging others to get their colonoscopy. Now this blog, set up very thoughtfully by my daughter Marcia, is simply for the relating of my cancer experience. So anyone reading this should be expecting the type of content herein. But if you read anything I write on Facebook and think, "Is cancer all he ever writes about?", realize that no, I do actually write about other things once in awhile but yes, cancer is the elephant in the middle of the room that is my life and to ignore it is to ignore significant chunks of my life. So all I ask of you is that if it seems like I'm too pre-occupied on this topic, try to understand why. And also realize that this isn't some Real-Housewives-of-Orange-County vapid, pointless, and self-centered topic for discussion. Cancer is a serious disease suffered by millions of people that can affect or possibly has affected all of us in one way or another. All I can share is my story and my experience. I like to think that my co-workers are getting a daily case study on the effects of cancer. We may know someone with cancer, but unless we're with them every day, we really have no concept on what it's like. Well, my co-workers see me every work day. They know when I leave for a hook-up or a disconnect. They see my come in late on an "on week" Tuesday, dragging myself in, moving ever-so-slowly. They see me at my desk dealing with the occasional chest pain. They see me improving by the end of the week. They may not feel my pain but they see what I go through. I'm like a cancer experiment come to life for them. If for some of them, it gives a greater understanding and compassion for the disease, however small, then it has truly been a learning experience. I continue to appreciate all of the support I receive from people, from New York to Hawaii and many other countries, thanks to Cyndy's Facebook game connections. I will beat this - just be patient with me and my writings. Thanks to God and his healing grace which has helped me through this. You know what grace is, of course. Imagine a graph of all of the blessings that God has given you. That's a pretty high line. Then draw a line, much lower, on the blessings in your life that you deserve. The difference between that line and the top line? That's God's grace upon you, at least as I define it. Blessings to you all.

Putting Things in Perspective

When I was in my 20's and 30's, I used to at least subconsciously think that more people should be like me - "If more people were like me, the world would be a much better place." I would occasionally think that or at least have the attitude of it. I had a great childhood with two wonderful, loving parents, loved my junior high years (which makes me automatically unusual), "lived" the 60's without being consumed by them, went to and graduated from college where I was a leader (OK, so I lost my race my House President; I was still the best Social Chairman my house ever had, was the Head Deacon for the campus, and was sports editor of the Graceland Tower and wrote better articles than I had read my freshman year), married my beautiful, wonderful wife, had 3 beautiful, wonderful children (spaced nicely apart), was a leader in my church (including pastor for 2 years), had done well at work and gotten promoted for my efforts. So as I neared 40 I was happy with my life and again subconsiously thought that more people should be like me. Now as I approach 60, I wouldn't wish my life on anybody. No one should have to go through what I have gone through the past few years. Things have certainly not turned out like I thought they would in my late 30's, starting with losing my job at age 40. I shared a few of these thoughts with a co-worker the other day but he had a response for me. He basically said that despite my physical battles, I have a lot going for me. My wife and family, my great grandchildren (not my great-grandchildren - none of them yet), a good job, lots of friends at work, a good work reputation for working hard and long (if needed) and getting the job done, a known set of high values, earned respect from people. And even with my physical issues, I'm winning those battles. I had to stop and say, "You know, you're right. Sometimes it's easy to forget those things when other issues dominate." I even thanked him for reminding me of those things. It's like the line from "Mr. Mom" (you all quote from that movie all the time, right?): "It's real easy to forget what's important. So don't." Good advice. So as I approach my final 8 chemo cycles, I will try to keep in perspective the good things in my life, beginning with my family. I've joked for years with Cyndy that I'll keep her until I find someone better. And I've been trying hard for over 36 years now - it's just that I haven't found anyone better yet. But once I do... Of course, she counters with that fact that she's looking for a younger guy - who wants to be with a guy nearing 60? The truth is probably no one on earth wants either one of us but we do want and need each other and that's all that matters. As I've said countless times, I don't know how I'd get through this ordeal without her. And fortunately for me, she doesn't give me the opportunity to find out. Everyone has a cross to bear of some kind. Whatever yours is, I hope you can keep the good things in your life in perspective to help you make it through difficult days. And you can even make things better in your life though the choices you make. I remember back in the 70's when I taught at North Harrison High School in Eagleville, MO. It was a small school and we had delicious lunches prepared daily by these grandmother types. In a story that would have fit right in with our school, I heard about an old woman who lost her husband and had become very depressed and despondent. She probably thought of ending her life or at least wishing it would end soon. She would sit alone at home each day, willing the hours away. Then she became aware of an opening for a cook at the local school. Her family encouraged her to go for it. At first she didn't want to: "I'm old. Why would I want to be around kids all day?" But finally she relented, applied and got the job, as she was an excellent cook (aren't all grandmothers?). What she found is that she made friends of her co-workers and lo and behold, all those children, who adored her meals, provided a spark in her life. All of a sudden she found purpose in life as she could hear what's going on in the lives of those kids, share her own experiences when she was that age, and even offer some advice for the problems they were having. She looked forward to waking up in the morning and going in to work. I'm sure her last days went a lot more pleasureably. I suspect the "school cook" of the last portion of my life could very well become volunteer work for the American Cancer Society or some other cancer-related organization. And if that becomes my legacy and my stories encourage hopefully more than one person to get their colonoscopy and or to deal more strongly with a cancer they may already have, then I can be happy with my life. But even if that doesn't happen (though I certainly have encouraged numbers of people to get a colonoscopy), thanks in part to my co-worker, I know I have much to be thankful and happy for. I may not wish for you what I have gone through recently, but I do wish for you to reflect upon the happiness that you have had in your own life and hope you have more of the same. God Bless you all.

At the Quarter Pole

Sorry it's been awhile since I blogged. I have had three of my prescribed 12 cycles since then with 4 drugs compared to the three I had last time. What I was told last time about the cumulative effect of chemo certainly seems to be holding true this time. That is, the 2nd cycle feels worse than the 1st, the 3rd feels worse than the 2nd, etc. This is my "off" week and I should be feeling better, but truth be told I'm still not feeling too hot - definitely not as good as this time in my last "off" week. Besides the chest pains that I always have that are caused by the 5FU drug, I have some new and different side effects this time. None of them are unbearable but they are certainly annoying. Little things like a weakened voice, frequent headaches, disorientation (only right after my drug administration), occasional bleeding in my nose and stoma, and an overall "blah" feeling that is hard to describe. It's hard to say if the drugs are causing all of these and I probably won't know for sure until a few weeks after I'm finally done with this and I can see if everything has stopped.

My first battle had three separate rounds of chemo treatment. One was weekly for five weeks. The second was monthly for 4 months. The last was 6 times every two weeks. So even if the side effects were cumulative, there weren't a lot of consecutive opportunities to worsen - no more than 6 times. I don't mind saying that I am more concerned this time because (1) I've got 12 of these to go through and they are 9 to go and (2) I've already seen cumulative effects and I'm wondering how I'm going to be after the 12th. I just tell myself, "You're tougher than the chemo" and "You've beaten this once. You can do it again." Dr. Y said I had an option of no treatment, since Dr. Ondrula got all of the cancerous mass in my thigh during the biopsy, but Dr. Y did not recommend this, as the chemo is needed to ensure all of the cancer is gotten, no matter where in the body it is. The main problem with chemo is that it kind of goes through your body like a tidal wave in that it goes through your body destroying just about everything in its path - cancer cells and good white blood cells, not caring about what side effects it's causing along the way. You just hope and pray all of the cancer cells are killed and flushed from your body and whatever good and healthy cells are killed or damaged are repaired or replaced by new healthy cells.

When you're a kid, it's easy and typical to "wish part of your life away." You know, an 8 year old may wish he were 12, a 12 year may wish he were 16, a 16 year old may wish he were 21, and so on. As you age and you realize the value and importance of each day and that tomorrow is guaranteed to none of us, you likely stop "wishing part of your life away." (Maybe an exception is those who wish they were of retirement age.) With that in mind, as much as I wish it were the middle of July now and all 12 of these cycles were over, I'm going to live each of these days as best and as productively as possible under the circumstances. I likely won't be as productive as usual, but chemo causes you to create paradigm shifts of what "normal" is. Who knows what else may happen during that time? For instance, a representative from the American Cancer Society has been trying to follow up with me about doing some volunteer work after I indicated to them a willingness to do so. So we'll see what happens there. Of course, the other side of trying to wish your life away is that you never can. It's never instaneously x days or years ahead, no matter how hard you wish it to be. You still have to live one day at a time and that's what I'll try to do. I just pray for God's strength to see me through.