It was 21 years ago in Tallahassee that my yet-to-be wife Fran and I went on our first real date. She was getting her PhD in psychology, and I was the morning guy at the number one radio station. We’d hung out as friends for quite awhile, but I wasn’t much interested in girls after having come off a devastating end to a long term relationship. Sensing that we were the perfect match, except for my heart being on lockdown, Fran made a bold move as we exited the restaurant after dinner. ”We might as well get this kissing stuff out of the way since you know we’re going to get married and have children,” she said. Like an expert safe cracker, she said out loud what I’d already been thinking, and I opened right up. Never has the chance for a first kiss been served up better. So right then and there in the parking lot we “got it out of the way.”
Fast forward to this past weekend. Our intention was to take our 17 year-old daughter Lauren to visit FSU as we start the college audition process. But once we finished that, every street in town turned into memory lane. We made our way back to that parking lot, and with the fruit of our looms as the official photographer, we went to the same spot, and showed her where the vague concept of her existence began.The first kiss was the start of our lives together, this kiss signified the beginning of the rest of our lives together.
The world is so different than it was in 1988, but she’s still her, I’m still me, and we are still us. That’s everything.
As I leave the year 2008 behind, half of which my sister and I successfully battled cancer, I feel like I should have a renewed philosophy on life and what’s really important. Knowing that I’ll be in this battle for the rest of my life has changed me for the better in many ways.
But the other day on the golf course, after hitting a 260 yard drive down the middle, and then proceeding to flub my way to a bogie on the hole, I saw my feeling of frustration as a positive. It’s hard to explain, but for that moment, that feeling of disappointment and self-defeat was refreshing. It meant to me that everything else wasn’t the headline story. Sure, half our life savings has been wiped out in the recession and I could get a bad PET scan in a few weeks, but things must not be THAT bad if all I could think about for that brief time was the disbelief that it took me 3 putts from 15 feet to get the ball in the hole. It was cathartic to grumble under my breath for a minute about something so trivial.
I guess a better person would just be happy to be alive, and have the opportunity to spend the afternoon with a close friend on a beautiful sunny day. But for me, feeling bad felt really good.
My family is hair-obsessed. That’s probably why I’ve always had a Conrad Birdie, Tony Danza, Ringo-esque lump of it on my head. I thought I would freak out when my hair started shooting out like arrows once the chemo kicked in, but it really didn’t bother me at all. The low-maintenance head has amazing advantages.But what has happened after all the treatments does have me feeling self-conscious.
I have the best dermatologist in the world. It was she who first discovered my lymphoma, even after preliminary tests said I was fine. When my face recently broke out in an apparent rebound from the Prednisone steroid in my chemo, it was she who called me in on Sunday when her office was closed to once again debunk the lab’s findings. How many doctors call out of the blue saying, “I was just thinking about your case and…” She’s now done that twice with me. And it’s not like she’s a rookie just getting started, or only has a few patients. In fact, she’s so busy that she’s no longer accepting new patients.
I’ve spared you the pleasure of posting a photo of me during my skin’s rediscovery of my teenage years, but picture in your mind a close-up image of a Rice Krispie treat dipped in Pepto-Bismol. I definitely have a face for radio right now. Topical steroids have helped, but not until that Sunday did we find out what’s causing my reaction. Roseacea. Since chemotherapy turned my immune system off, the once-every-3-years issue I had with a mild flushed look has turned me into a Lite Brite toy with all the pegs missing but the red ones.
Before I left to emcee an event last month at the Enzian Theater I decided to put on a little foundation left over from a TV shoot so that people wouldn’t think I was turning Halloween into a week-long celebration. Last night I reapplied the makeup at the black-tie Florida Hospital Gala. I think I may be a little too skilled at this actually. For two hours I looked like a fuzzy-headed version of my old self. The splochiness was evened out and I felt as radiant as a cover girl. If you really looked you could still see a topography similar to the Appalachian Mountains on my forehead, however if you were standing that closely, your eyes would have watered from my breath before you could spot my spots (the chipotle appetizers were fabulous!)
My father’s name is Max, but his middle name is NOTFactor, so it’s back to the drugstore again today for another antibiotic to see if we can make my complexion less complex.
Something has to work for I fear that Fran will start to lock up her cosmetics soon, or call ABC television to cast me in “Extreme Makeover-Homme Edition.” (<---Score one for the kid! A rare FRENCH pun!!)
Since chemo is done for now, and I’m beginning to kick back into a normal gear (except for a very annoying skin reaction on my face leftover from the treatments), I’m finding that reassembling my life is like trying to repack a box that now seems too small. No matter how many times I take all my responsibilities, hobbies, obligations, and interests out and try to put them back in the box, they spill over the top.
Back before my diagnosis, all the different items of different sizes and shapes fit snugly in my “life box”. If there were days I couldn’t close the lid, I would just exchange my sleep container for a smaller one to make room. But now that taking care of myself is a top priority, some of the other items will have to shrink. But which ones? No time to figure that out now. I’ll have to get back to you when I have the time!
There’s no guarantee that the good will equal the bad in any given life. Some people seem to be bad luck magnets, and some get an extra helping of the good breaks. It’s my theory though that only your brain can put a value to how big the positive and negative events in your life are. Cancer can help one to appreciate the little things a lot more and to find sunshine in a storm.
My dad used to call me “Speedy Gonzales” because I would take forever to finish my dinner, tie my shoes, or get in the car. But there is no slow poke quite like a bone marrow biopsy. If you’ve never had the pleasure, the doctor hand drills a dull knitting needle into your hip bone just above your right cheek. Once he’s through the bone, he draws out the marrow to examine. The Geneva Convention has a clause banning it as an interrogation technique on terrorists, but the American Medical Association seems to still be cool with it for cancer patients. Never has it been more true that it’s better to give than to receive.
But (or butt), as unpleasant as the marrowthon was, there was a wonderful trade awaiting me. Within minutes of arriving back home, FedEx was at our door with a styrofoam box filled with my all-time favorite food packed in dry ice, shipped directly from Heaven-on-Earth, Rubino’s Pizza from my home town. Rubino’s has been an iconic treasure in Bexley, Ohio for probably 50 years. Back before Domino’s, Pizza Hut and the others, in fact back before pizzas were even delivered to your door, Rubino’s had a nice monopoly going on Main Street in our little suburb. Once I started having a little freedom in high school, I actually went for a stretch of 33 consecutive weeks where I had a “Bino’s” pizza on both Friday and Saturday nights.
At one point in the 70’s, Rubino’s was going to be bought out and torn down. Then all of a sudden the crisis was averted. We never knew exactly how that nightmare resolved itself, but my friend Bob and I came up with the scenario that knowing of how much we worshiped the place, our parents bought it and kept it running just for us. The story in our imaginations was that when our folks would catch wind that we were headed to Rubino’s, they would call a bunch of actors to pretend to be customers so we wouldn’t know that the place would only open for us. If we would run into friends there we would tell them how convincing they were. Not being in on the joke, they just ignored us. That happened a lot anyway since Bob is as big a goofball as I am, if not more.
Meanwhile back to the box. Packed inside were 6 pre-cooked frozen Rubino’s pies. My sister Terry, who is going through her own cancer battle, worked a deal with them to have the pizzas shipped to our door. I don’t know how many times a pizza has made somebody cry, but Rubino’s is more than pizza to me. It’s a “slice” of my life. Even my wife was teary-eyed as we explored the contents, and the meaning behind the surprise. If you tried it you would taste the amazing combination of tomato sauce, cheese and crispy thin crust. But when I have Rubino’s, I also taste innocence, security, and the warmth of family and friends.
Would I have a bone marrow biopsy twice each weekend if I knew there would be a Rubino’s pizza waiting for me each time? No. But even with that awful procedure, the way my brain valued Friday’s events, I consider it to have been one of the best days of my life.
As my final treatment approached last week, I made sure to keep expectations of those around me to a realistic level. When our marketing director asked, “When do we get you back?” concerning my ability to resume my public appearances, I reminded her that it takes a good 4 weeks to feel somewhat normal after each treatment, so not to expect me before November. When my band asked, “When can you start playing with us again?”, I pointed to December before I could rejoin my mid-life crisis.
It would have been nice that if I had listened to what I was telling everybody else.
I first thought that this treatment hit me a little harder because it was my 6th, and there could be some cumulative effect from the first 5. But in looking back, I see that I got caught looking past this one. After waking up at 1:30am Thursday, I thought it would be a great idea to stay up all day, watch the Vice-Presidential debate, stay up for the analysis, and then go to bed at about 11:30pm. If you do the math, that’s a 22-hour day. Then after a bladder-interrupted 4 hours of “rest,” I was up again to go do the morning show. I Googled around and nowhere did it say that sleep deprivation was a good way to overcome chemo the week prior. That’s why I hate Google.
From Friday to Sunday 90% of me slept almost continuously. The other 10% was my bladder which hasn’t even so much as napped since chemo started. But after 72 hours of hibernation, I’m back!
You don’t have to take my word for it though, turn up your speakers, click the play button below, and enjoy the (freak) show!
With Friday being my final treatment I should be ecstatic, but just between you and me, I have some mixed emotions. For the past 4 months, the chemo has been my equivalent to our military’s “Shock and Awe” bombing campaign. Now that my enemy has retreated, it’s time to lay down my arms. (Don’t worry, I’ve been using deodorant…and anyway, I’m talking about the other kind of arms…)
But, as I call a truce, there’s no guarantee that there won’t be cells organizing within my borders to strike again. The first time they attacked, I had no gut feeling that they were feeling around my gut. So from now on, it’ll be “trust but verify,” with quarterly PET scans acting as my personal CIA. Could I keep going with military analogies? Yes. Do I hear you saying, “Enough with the military analogies”? Yes.
The bottom line is that my immune system has already let cancer in once. And lymphoma is cancer OF the immune system. So, after winning the first battle it’s a little too early to put up the “reMission Accomplished” banner. (sorry, that one snuck out before I could stop myself!)
But at the same time, I’ve read your stories, and have heard enough evidence from doctors, to optimistically look forward to years of cancer freedom. I have total faith in Sergeant Spleen and General Practitioner to keep the peace. (don’t worry, I’m calling Analogies Anonymous right now…)
I’ve hosted the annual Leukemia and Lymphoma Society’s “Light The Night” walk for nearly a decade. As I was on stage last year listening to the compelling stories of survivors, and families of those who lost their struggle, I had no clue that I also had the disease. The ironic thing is that, because of the timing of my treatment, I’ve had to decline the invitation to host the event this year. However, several folks from the radio station, along with my wife and daughter will be walking around Lake Eola this Saturday night. It’s never too late to get involved, and to help raise money for the organization that helps thousands throughout our community.
If you have time, or if you’d like to support our team, please contact Angela Schlesman, MIX105.1’s Marketing Coordinator, at aeschlesman@cbs.com
In celebration of my 5th of 6 treatments, here are 5 updates since my last post.
Nomo Chemo
My sister Terry, who was diagnosed with breast cancer two weeks after my diagnosis, is done with her chemo! Last, but not least, is radiation. Who would have ever thunk that a lumpectomy would be considered the easy stage? (…and yes, that’s the first time I’ve ever typed the word “thunk”)
Dad Gets Even
As stated in an earlier post, my 90 year-old Dad accused my sister and me of trying to kill him from stress when we simultaneously cancered-up. So, after months of thought, he came up with a very creative payback last week. While getting into the back seat of a friend’s car, the driver pulled away before my Dad was all the way in, and ran over his left foot with the back wheel. Two broken ankle bones later, my father is in a very masculine-looking black cast. No soccer for two months.
I Guess Laughter ISN’T The Best Medicine
It seemed like a typical day for my brother Jerry, the pharmacist, a couple of weeks ago. After helping one customer, another one walked up for his Oxycontin. There were three problems. He didn’t have a prescription, he didn’t have money, and he wasn’t much for the word “no.” After it was made instantly clear that Jerry wasn’t being offered any options, he wisely gave the guy what he came for. But my brother DID get the final word by not offering any refills, or free duplicates at the photo counter. Jerry was shaken up, but handled the situation with his amazing calmness. The guy was caught, but sadly they don’t give inmates internet access, so while you can read about him, he can’t.
My Trip To Germ-many
After each treatment, I go back to the oncologist’s office 3 days later to get a shot of Neulasta. It’s a drug that increases my white blood cells that the chemo wipes out so I’m not so susceptible to every cold or flu in the neighborhood. When your immune system is reduced to close to zero, you become very paranoid about flying germs. I wish I could see them, but maybe it’s a good thing I can’t or I’d be constantly ducking, bobbing and weaving to get out of their way, and I’ve already been accused of not being a very good dancer.
Checking in at the desk, I sat for about 15 minutes in the waiting room. Just lucky I guess, but I had picked the best seat in the house for the National Coughing Championships. Apparently, to stay in the contest you cannot cover your mouth when you cough. First one to be considerate loses. And these two finalists were in it to win it! Both were non-patients and were on either side of me. The entire time I sat there I felt like the net on a tennis court where the two players were volleying deep, wet, thick, Jed-Clampett-up-from-the-ground-came-a-bubblin’-crude kind of hocks. Before I went into my germ-tusi dance to avoid the flying viruses (or is it viri?…nevermind, I’ve already used the word “thunk”) I invited myself to the back to get my shot before a winner was declared.
In The Predni-Zone
One of the chemicals in my cocktail is Prednisone. It’s a powerful steroid that is used to treat a variety of conditions. From what I can tell, most patients on this medication take from 5mg-10mg daily for months. I’ve been prescribed 100mg a day for 5 days with each treatment. It’s a lot. And it makes itself known as I take it and as I stop. When I’m on it, my complexion is crystal clear, my energy is high, my brain is creative, I get little sleep but my eyes are clear and bright, and I’m highly motivated. As the other 4 chemicals are tearing me down, my friend Pred is boosting me up (while secretly tearing me down….) Then, after day 5, the prescription bottle is empty, as is my gas tank. I swing past normal to low. The rebound affect that comes after makes things worse temporarily. I break out like a teenage girl on prom night, I wear a sweatshirt to walk the dog on a 90 degree day, and I sleep like a baby…well almost…I don’t wet the bed or wake up every 3 hours to breast-feed.
So one more round of chemo at the end of the month and then it’s a lifetime in Scan-dinavia. PET scans, CT scans, bone marrow tests and regular checkups. All this to control a disease 6 months ago I had no clue I even had. Who would have thunk?
I have NOTHING to do with it, but my family is quirky. We have enough inside jokes, secret codes, and eccentric traditions to drive away even the most loyal friends.
Example 1: The word “hmmm.”
If you ask me right now, “Are you hmmm?”, my answer would be a solid yes. I’m very hmmm. In our family, “hmmm” means tired. Don’t ask me to explain why we say that, I’m too hmmm right now.
Example 2: “Did you ever consider the possibility that maybe YOU’RE…”
About 67% of the time, if you make an innocent observation, the family member you’re speaking to will respond in that way. Here’s a possible exchange:
Person 1: “The pool is full of leaves from the storm.”
Person 2: “Did you ever consider the possibility that maybe YOU’RE full of leaves from the storm?”
So when tropical storm Fay was coming toward us last week, I had no choice but to defy my pledge to only eat food that could nutritionally help me fight my cancer, and abide by one of my family’s main storm preparations. Waffles for dinner.
Back in 2004 when Hurricane Charlie came right down our street, the last thing we ate before we lost power for 8 days was waffles. Since then, every hurricane, or other severe tropical system, comes with a pre-storm meal consisting of my special belgian waffles, whipped cream, butter, syrup and strawberries. The nice thing is that when everyone else in the area is rushing to the store to get bottled water and other storm-related necessities, no one is battling us for that last can of Redi-Whip.
Another family “thing” is that birthdays are huge…so much so that we even celebrate half-birthdays. It’s not because we’re all that thoughtful, it’s that we LOVE birthday cake. Guess whose half birthday was on Waffle Night? You’re lookin’ at him. So after we finished our waffle dinner (which I nailed by the way…best waffles EVER!), we enjoyed healthy servings of yellow cake with chocolate fudge icing. Let’s recap…waffles, butter, syrup, whipped cream, and birthday cake. If you Google any of those items, none of them will take you to the American Cancer Society’s dietary suggestions web page. But it’s not OUR fault that a tropical storm was coming on my half-birthday. It was totally out of our (self) control. It was as if Fay had opened the door to my pre-cancer life for one meal. The problem is that in all the excitement, I forgot to close that door. While we endured non-stop rain outside, the national weather service issued a flash food warning for my stomach. Bagels, pizza, risotto, ice cream, and coffee cake were suddenly back in play. I went from 170 to 176 in 3 days. I don’t think I fell off the wagon, I think I tipped it over!
On top of all that, bedtime started to shift from a responsible 8:30, to 9:30, and then to 10:30. By last Friday I was so “hmmm” that I fell asleep mid-conversation with my wife and our friend Fake Uncle Charlie. (whose name is another inside joke.)
Fay is gone, but people are still dealing with swollen bodies of water. And after getting on the scale, the answer is “Yes, I’ve considered the possibility that maybe I’M a swollen body of water.” I will happily give this sand bag back that I’m wearing along my waistline and get my focus back. This is no time for waffling!
Back in day, if we were at a restaurant and our daughter Lauren ordered french fries, I would do the old, “Hey, what’s that over there?” diversion so that I could steal a few without her noticing. When she would turn her head to see what I was talking about, I would snatch a few of those beautifully golden brown crispy critters and swallow them before she turned back. I obviously stooped to such behavior out of my concerns for her intake of trans fatty acids, and the health of her young cardiovascular system. I considered it the ultimate sacrifice that I would go so far as to ingest this “poison” to keep her out of harm’s way. And if you’re buying that, then I was also once a deep sea turtle, and have been contacted by both presidential candidates to be their running mate (and turned them both down.)
Fast forward to now, and I’m seeing that that old diversion is back, this time to help me.
When I was first slapped upside the head with my lymphoma diagnosis, everything revolved around the disease. I had no symptoms, but I was trying to feel some. What felt like rapidly-multiplying lymphocytes near my abdomen turned out to be my cell phone vibrating on my belt. Or I would have random thoughts like, “Last time I was here getting my car washed, I didn’t know I had cancer.” It was like having CNN, the Cancer News Network, broadcasting in my head 24 hours a day.
But then chemotherapy started and it said, “Hey, what’s that over there?” Like a couple of missing french fries, the cancer thoughts were instantly gone, and we were thinking solely about the looming side effects of the treatments. I kept a journal of everything I ate, the medications I took, my sleep duration, the number of times I went to the bathroom, and rated each day on a quality scale of 1-10. If things started going south, I wanted the doctor to know everything he could to fix me. Fortunately, as you may have noticed in previous posts, my treatments have been relatively drama-free. So after a few weeks of, “Dear Diary, I pooped today at 1:17″, I shelved the daily record keeping. But the treatments remained the headline item on my personal CNN. The Chemo News Network.
Then, last week came the heart and PET scans. And once again, the diversion. Even though I was there for treatment number 4, by reading us the successful results, the doctor did a masterful, “Hey, what’s that over there?” And in the after-glow of the report, all concerns about the pending chemo vanished like a fry in a Happy Meal.
While it can go into a deep sleep, my cancer doesn’t have a cure yet. I’ll always be at the mercy of the next PET scan every few months to see if it’s back. But if we can string several good ones together, then I can look forward to the days, months and years where it takes little, or nothing at all, to divert my attention away from this disease and say, “Hey, what’s that over there?”
We interrupt this program for a special report. We have reason to believe that someone’s cancer has been abducted and taken out of state. The cancer was last seen in the lymph nodes of this person’s abdomen and neck, and also on his scalp. Upon a routine PET scan on Thursday, the cancer was declared missing. The cancer was last seen being led away by a person of interest who goes by the nickname “Chemo.” There is no reward being offered, and all efforts to return the cancer to it’s owner have ceased.
Repeating our top story, after his most recent PET scan, no cancer showed up in the lymph nodes or scalp of a Winter Park, Florida man today. We have reporters on the scene who will update us after an additional PET scan at the end of September once treatments are completed.
We now resume normal programming, already in progress.
Well, Cindy Crawford I’m not. She’s made millions off of her trademarked mole, but when my oncologist spotted one on my back 2 weeks ago, he didn’t offer me a lucrative modeling contract. Instead, it was back to the dermatologist, the original scene of the crime (see previous posts), to have it looked at and possibly removed and biopsied.
Seborrheic Keratosis. No, he’s not a swimmer for the Greek Olympic team. That’s what my “mole” is. It’s just a benign brown barnacle thing that people can get as they age. I don’t know why I have one since I’m still 28 in my mind, but it is what it is. Whales have barnacles, and now I have one. I’m gonna show it to the gate attendant at Sea World and see if I can get in free as a “Friend of Shamu.” I bet they’d let Cindy Crawford in, and she only has a mole.
Tomorrow it’s time for my next test, the ever-popular MUGA scan (pronounced MUGGA, not M-U-G-A unless you’re one of The Village People…) The MUGA scan is a regularly-scheduled video of the heart to see if the chemo is doing it any harm. I had one before we started the treatments to see what the original factory specs of my heart were. I wasn’t quite ready to lay on my back perfectly still while this machine hovered just inches from my face for 15 minutes though. I’m a very calm, low-key guy, but I don’t do well in close quarters like that. So this time, they’ve prescribed my very first dose of Valium. Could be quite a show. Either I’ll feel uninhibited enough to really freak out about the claustrophobia, or I’ll happily break into a slurred version of “I left my heart in scan Francisco.”
Monday was to be my PET scan to see if the cancer has been scared off, but the appointment has been postponed to Thursday. It’s kind of the most significant hurdle I’ve had to jump in all of my 28 years (!), so the 4-day delay seems like an eternity.
Maybe instead on Monday I’ll head over to Sea World and flash my “back”stage pass…
Chemo treatment number 3 (out of 6) is in my body and, while I’m sure my blood cells and organs aren’t too happy about it, they’re keeping their opinions to themselves and not bothering me. When I wake up in the early morning and know that I feel good enough to go to the radio station and play with my friends Erica and Jay, that puts me ahead of the game. I’ve been skipping my vacation time and banking the days in case I need them for health reasons later. I’ve considered taking a couple of long weekends, but for now, having fun on the radio has done more for me than any medicine could, and I haven’t come close to needing a sick day yet.
I’m well past being self-conscious about my bald head. I only wear hats at work to keep the concern from my caring co-workers down and to try to keep things as close as possible to business-as-usual. As soon as I leave each day though, I take the hat off. But here’s the issue. I now get “Hat Head.” The indentation rings that my hats create on my head last all day. I look like Saturn. And each hat seems to press a penny-sized pink concave button into the top of my forehead that is almost permanent at this point. It looks like a big outside-in zit. I realize that in the world of stage 4 cancer this is a picky point, but since I don’t have hair to obsess about, I have to over-think something.
My sister Terry, who was diagnosed with breast cancer within two weeks of my lymphoma diagnosis (see earlier posts), is doing well after round 1 of her chemo. She passes along her thanks for all your support and prayers. I don’t think you know how much it means when you express your concern to people who have suddenly had their health yanked out of their hands. You’ve been so wonderful to her and to me.
My next big event is my mid-term exam on Monday, August 4th. They’ll give me a shot of radioactive material, which will light up the cancer cells for the body scan machine to take pictures of. The last PET scan I had was the one that confirmed I have cancer. This one will hopefully show that I can turn most of my attention now to curing my Hat Head.
Chemo treatment #3 is tomorrow, and for some reason I feel like this one will be the true indicator of how I’ll do with the remaining 3. The first round took my hair, the second took a little energy, but neither have lived up to their potential as far as nasty side-effects. I’ve had a number of people suggest that I feel free to write about the bad days, the low moments, my fears and my concerns. The problem with that is that since I’ve started chemo, I haven’t had many. I went through plenty of Kleenex boxes when I was first diagnosed, but since then, my cancer and I have an understanding. As long as it goes quietly, I won’t harbor any resentment. I’ve explained to the cancer that it can’t outlive me, so what’s the use in putting up a big fight?
To be honest, I sometimes feel like I’m not representing the plight of cancer patients well enough because my life hasn’t been turned completely upside down…yet. I even asked my wife the other night if she thought we might be in denial. I didn’t plan on my question keeping her up until 3am, but even after all that thought, she still didn’t think we were in fantasyland. She’s a psychologist with a Ph.D, so I believe her, I just don’t appreciate being billed for the 4 hours that she tossed and turned…
So tomorrow it’s back to the treatment room to fill me with more Windex, Prestone, WD40 and lighter fluid. (I can’t remember the exact chemicals in my chemo, but I think that’s correct.)
Hopefully, as with the first two, it knows how to kick the cancer’s butt without kicking mine.
With things going swimingly after my second tour of duty at Camp Chemo, I can fill you in on random details of my redirected life:
My next treatment is on my father’s 90th birthday. I can finally beat him at golf, but he’s lived 90 years cancer-free, so we’ll call it a draw.
I’ve greatly improved my diet, but finding a place for my increased servings of vegetables is a little awkward. Yesterday for lunch I had a peanut butter and jelly sandwich with a side of asparagus.
To even the skin tone of my hairless head, I’m driving home each day from work with the sunroof open.
With all the recent rains, the mosquitos are landing on me, but not biting. My chemo-tainted blood must taste like peanut butter and jelly with asparagus to them.
A tank of gas lasts twice as long now that I’m pretty much just driving to work and back each day. I’d probably get even better results if I didn’t have the sunroof open.
I didn’t realize I own so many hats. I’ve gone a month without wearing the same one twice. But I still wear the same shoes everyday.
Since my diagnosis, all of my normally sarcastic guy friends have shown me a caring, sensitive, communicative side that I didn’t expect. If we get any more in touch with our feelings, we’ll be quilting together.
My wife and I have never spent this much time together. We share dinner together every night. We walk almost every evening. We watch movies on the weekends. The more I’m with her, the more I miss when we’re not. I think she likes me too.
To keep my system spotless, I’ve had nothing but water to drink since I started chemo. I don’t know how fish maintain their will to live.
I don’t know if it’s the chemo taking over, but I downloaded a Helen Reddy song to my iPod a couple of weeks ago (”Peaceful”). As I was at my computer the other day, it came on, and my wife couldn’t understand how one person (me) could enjoy iTunes’ segue from Helen to Zeppelin’s “The Lemon Song”. To me “Redd Zeppelin” seemed like a perfect mix. But to a person, no one, not even my previously-mentioned “Spitters and Knitters” men’s club can look me in the eye anymore once they know I have Helen Reddy in my collection.
Thanks again for reading and caring. I’ll check in next week before round 3.
Unless you have an irrational fear of it, success is something we all strive for. There’s hardly anything better than setting goals and achieving them. The feeling is a combination of joy and relief with a good helping of self-esteem added in. Hopefully you’ve been blessed with your fair share of personal successes.
When I was given the information sheets on the 4 chemicals they’d be giving me in my chemo cocktail, each one described possible side-effects. As is the norm in the medical field, they’re obligated to mention all the possibilities. Even if only one person started barking like a dog after treatment, they have to mention that you may also find yourself in your backyard keeping your neighbors up at night. For each of my chemicals the sheet mentioned intestinal distress, ranging from the frequent-trip variety to the “might as well rent out your bathroom, you won’t be needing it” type. Without getting into any more detail, let’s just say that after each of my first two rounds of chemo, the first few days are like I-4 traffic at 5pm. And there are no detours or alternate routes.
The thing about success is it has to be prioritized. It’s not considered a successful week if you get fired, but finally finish that crossword puzzle. Having said that though, if days and days go by without something going bye, priorities can change. Having been diagnosed with cancer, I should have been thinking global, spiritual, and philosophical thoughts about making the world a better place, but I couldn’t think of anything else. Everything had to be put on the back burner, if you will. Seeing Charmin ads on TV made me think they were mocking me. I was even starting to walk differently. Having ingested enough fiber to build a sofa, I was about to call a plumber, a locksmith, anybody. And then…..success! Woof! Woof!
I wish you a very “successful” 4th of July. Complete with all the fireworks you hope for.
A few days after my first round of chemo, my daughter Lauren asked me how I was feeling. When I told her that I was doing much better than I expected, she said without missing a beat, “Daddy 1, Chemo 0.” Even though 85% of my hair is no longer on my head (and thus we now have a carpeted bathroom that didn’t cost us a penny), I feel that I really did get a freebie with the first cycle.
Memorable moments from round one include two Thursdays ago, when during the 8am hour I felt as though somebody slipped me a couple of martinis. I was DUI (deejaying under the influence), but no alcohol was involved. It’s an interesting exercise to try to talk on the radio and run the control board while the chemicals make your brain think it’s riding Space Mountain. Also there were a few days recently where my voice started strong, but then was pretty much shot by 10am. I had to turn into a mime each day until the next morning to be able to do my job. My wife seemed to enjoy the peace though. Another weird symptom was that most music, jingles, and even our home phone seemed lower in pitch. I’m not saying that Madonna sounded like Barry White, but there was a morning where Erica’s voice reminded me of Larry King.
Everything is back to normal now, but with treatment number 2 coming tomorrow, I’m sure we’re in for an even more interesting ride.
We’ll see how hard the chemo tries to tie the score.
When I was 12 years old, the radio bug bit me. Of course at that age, every kid listens to the radio, but my older brother used to go see the deejays when they were broadcasting live, and once or twice, he took me along. He always had this huge grin on his face when the air personality would look his way.
My love of music, and the thrill that the radio stars added to the atmosphere sparked a fire in me that charted my vocational course. I didn’t know anything about being on the radio, I just knew I wanted to do it. After regular mock radio shows in my friend Dave’s bedroom, and after studying broadcasting and hosting a morning radio show in college for 4 years, I was ready to do this for a living.
I was hired at my first job 30 years ago this week. Middays on WNKO-FM, Newark, Ohio. They offered me $150 a week, and I couldn’t believe my good luck.
This week, 30 years later I still can’t believe I get to do this.
Since my first treatment treated me mildly, I had a chance to settle into my new lifestyle here at Camp Chemo, commonly known as our house. However, I still haven’t had as much opportunity as I would like to respond to the many emails sent to me directly, and to the posts here on my blog. I had ambitious hopes of being able to reply to everybody, since you took the time to support me and talk to me about your challenges, but until I can accomplish that goal, I’m going to use a quicker route to answer some of the common questions that I’ve received.
Q: What type of cancer do you have?
A: I have Follicular non-Hodgkins Lymphoma. It’s a slow-moving plodding kind of cancer. The slow-moving part is good and bad. You have some time to figure out a plan to fight it, but it gets a lot of time to spread around before you know you have it.
Q: How did you discover it?
A: I had a little itsy bitsy pink spot in the right upper corner of my forehead about the size of a quarter that just stayed there for months. It didn’t itch or hurt, and nobody else noticed it. When I had my annual dermatology appointment, I showed it to the doctor. She took a biopsy and sent it off. It came back benign, and we celebrated.
Q: So, wait a minute, if it was benign, then why are you on chemo?
A: That’s where this doctor was amazing. Two days after the good news, she called me. She said she had been reviewing the notes from the pathologist, and even though the diagnosis came back negative for cancer, she wanted to take another biopsy and run it through a different test. She just didn’t feel certain that we had the whole picture. Turns out that she was 100% correct, and the second test came back positive for lymphoma.
Q: Did you have any other symptoms?
A: None. In fact, I had a complete blood work-up and chest x-ray which both came back fine after the first biopsy. My dermatologist really went above and beyond the call of duty. She could have just as easily put my file away after the first test.
Q: So the cancer is on your scalp? Is that what “follicular” means?
A: It is on my scalp, but also in other internal places as well. Follicular doesn’t have anything to do with hair or scalp, it’s just what they call those particular cancer cells. I still don’t feel or see the cancer at all.
Q: What is the chemo like?
A: The actual name is CHOP-R. The letters each stand for a chemical (the “P” being Prednisone, a strong steroid). The “R” stands for Rituxan. Rituxan is not chemo, but a biological agent that hates my type of cancer. While the chemo kills good and bad cells, the Rituxan just takes out the bad. It’s pretty much the state-of-the-art when it comes to lymphoma. It increases your chances for success by 1.5 gazillion percent. The doctors say that on a 1-10, my chemo cocktail is about a 3.5 in terms of how it impacts me. I’m having a treatment every 3 weeks for 18 weeks, or 6 rounds of chemo.
Q: Did your hair fall out yet?
A: Not yet! But I’m expecting it to any minute now. Probably eyebrows and eyelashes too.
Q: Is your cancer curable?
A: They don’t talk “cure” with this one. They talk “manage”. They use the word “remission.” But they also talk years, and decades cancer-free. With medicine making such tremendous strides every day, 10 years from now hopefully this, and all other cancers and afflictions will be remedied with a vaccine or other cure.
Q: Why aren’t you talking about your cancer on the air?
A: I have a little, but this blog is the more appropriate place for people to be updated regularly. I’m sure it will come up on the air from time to time, but mostly when it’s to talk about the fundraising events of the Leukemia and Lymphoma Society. I’ve worked with them for years even before my diagnosis. If I can help to shed some light on their wonderful efforts, I’m happy to do so.
Q: How are your wife and daughter?
A: Everybody is doing very well. We went through all the normal stages when I was first diagnosed, and we still go through the disbelief from time to time, but tears have been replaced by hope, and the shock has worn off. We again thank everybody for your concern, your prayers, and for reaching out to us. Your support makes an indescribable difference, and has been something we have all leaned on to get through the longer days.
With the first batch of chemo now in my body, some silent changes are taking place. My red blood cells (the ones that carry oxygen to my parts) are diminishing which will start to sap my energy. Being fatigued isn’t being tired. It’s being exhausted. So far I’m pretty good, but last night when I got tired, I had a different reaction. Instead of just yawning, my nose went numb. It was back to normal this morning though. There’s something wrong with being able to smell your fingers, but not feel your nose. Random numbness is a pretty normal thing with this cocktail of chemo I’m told.
Also, my white blood cells (the ones that fight infection and disease) have been downsized. It’s an unfortunate casualty, especially for a germ freak like me. I need to stay out of crowds, avoid uncooked foods, and wear a mask around sick people. (And I work with a lot of sick people..) My battle with the germ thing has always been that, while I supply the studio with Purell, and am always hyper-aware of restaurant cashiers who handle money and food with the same hands, I still bite my nails. It doesn’t make sense, but I do. With my resistance being so low, that lovely habit has to die. But with stress being up, and little bits of cuticle constantly inviting me in for a bite like the food sample lady at Costco, I have to resist. It’s not worth the downside.
All in all though, the first round of chemo has been kind so far. I’ve been able join you in the mornings on the radio, get some work done, and try to begin to respond to an inbox full of very supportive email and comments.
Also, my sister Terry’s lumpectomy went as well as it could. No lymph node involvement, and clear margins. We’re all very excited about that. Her chemo will actually be more effective since they’ve determined that her cancer was more aggressive than originally thought, and chemo likes to eat aggressive cells.
As I told Terry, it’s amazing what passes for good news these days.
You’re looking at a guy who only has 5 treatments left!
But going into my first chemo, I had no idea that my bladder was going to be the star of the show. A few times a year I have what I like to call, “low tide.” I can tell when it’s coming because I’ll have about a 3 pound weight gain in one week, and then I’ll have a day where I have to pee every 15 minutes. It doesn’t happen that often, but today, was a low tide day. I went 4 times in the waiting room (actually in the bathroom off the waiting room to be more precise), and at least twice an hour during the 5 hour chemo session. The nurses were amazed as were the other patients. Too bad I was at the doctor’s office today, I could’ve helped put out some of the brush fires in the area.
I just took the Prednisone when I got home. Too early for side effects at this point, but in an hour or so I’m gonna go out and see if I can lift my car.
The best medicine I received today though was that Terry’s surgery was very successful, and her lymph nodes were clear.
Fran was wonderful, and although she couldn’t sit there with me, she came back for pep talks and deep, wet, lingering kisses (YOU decide whether you believe that or not). She’s been the errand queen, getting me everything I need to be a true chemodonna.
So, I’ll spend the weekend full of poisonous chemicals and see what happens. My body is probably having a flashback to the days I swam in Lake Erie at summer camp.
Within just a few days of my lymphoma diagnosis, My older sister Terry discovered she has breast cancer. This is crazy. At the very moment I’ll be in the chemo chair, my sister will be in an operating room having a lumpectomy. Our family is trying to make sense of it all.
We’ve always had some weird connections…Terry was born on the 18th. I was born on the 18th. Our Dad was born on the 18th in 1918. I started at MIX 105.1 on the 18th. Terry’s husband was born on the 18th. My wife and I were married on the 18th. I’m scheduled for 18 weeks of chemotherapy. But the odds that Terry and I would both be members of this year’s cancer class, and have our diagnoses so close together, is an unwelcome coincidence. Needless to say, our already strong bond has become unbreakable as Friday looms closer.
Our totally healthy parents, who will turn 90 and 85 this summer have accused us of trying to kill them with all the stress. But I truly believe that our family’s happiest times are ahead of us.
