Carey Has a Blog!

The love of my life apparently feels that I exaggerate and am not 100% honest in my blogs; especially when I describe how she smacks me in the back of the head or uses her laser-like sarcasm as she trods me underfoot.

She has created her own blog to refute my “blatant exaggerations” and to write about the wackiness in her life. In truth, having read her first two entries – I am very excited. She is a great writer, she has an easy-to-read style, and she’s pretty darned funny to boot.

Check out her blog!

The Binary Princess

Surfing Again!

Last night Carey and I spent the night at a hotel on Cocoa Beach. We found ourselves in the extremely unusual potion of having no children. Matthew and Christopher were at their bio-mom’s for the week and Ashlee spent the night at her grandparent’s house.

That left Carey and I childless. Alone.

We immediately took advantage of the situation and booked a hotel on Cocoa Beach We tried to leave work early, but events prevented us from leaving too early. As soon as we could, though, we rushed home and packed. I grabbed my 7″9′ surfboard.

We dropped the dog, Cassie, at my mother’s house and we were beach-bound!

We checked into our hotel around 7:00pm and immediately took a nice, long, walk on the beach. The weather was gorgeous, although the sand was wet from the rain earlier in the day. We walked to Ron Jon’s Surf Shop from the beach near the hotel. The breeze was blowing gently, the sun was setting, and the beach was mostly empty. It was wonderful to be walking on that beach, holding hands with my love.

At Ron Jon’s, I bought a rash guard shirt in anticipation of surfing in the morning. Carey bought a pair of flip-flops. I personally don’t like shopping at Ron Jon’s, but sometimes you have to break down and just do it. I remember fondly the old, smaller, surf shops that used to pepper the Cocoa Beach landscape. Some are still there, but there’s no denying that Ron Jon’s is more convenient because they have the selection.

Anyway, after we left Ron Jon’s we hopped in the car and drove to Coconuts on the Beach. I love Coconuts and always try to make time to stop there when I visit Cocoa Beach. There was a two-man band playing on stage and Carey and I found a small table outside overlooking the ocean and near the bar.

I ordered a bowl of clam chowder and the seared tuna for dinner. Carey had a Hawaiian burger. We both had Corona. It was great. After dinner it was completely dark, so we walked along the beach near Coconuts and used the light from our iPhones to spot small white crabs scurrying on the beach. Carey had never seen them before, so it was quite a treat for her.

Shortly after, we went back to the hotel and to bed. It was late and we had put in a long day.

We woke around 8:30am and, after a meager continental breakfast, we headed to the beach. We made it there by 9:30am. We didn’t have a lot of time – we needed to be back in Clermont to pick up Ashlee by 1:30pm and it takes 90 minutes to get there from Cocoa. So I had from 9:30 – 11:20 to surf and enjoy the beach – just under two hours.

I put that time to good use. The waves were small, no larger than a couple of feet and with infrequent swells. I was initially disappointed, but I quickly realized that this was the best possible scenario for me. I am still so weak that larger waves and more frequent sets would tire me out as I tried to paddle into the surf to get in position to catch a wave.

I DID tire quickly. The water was cold and I still think I am stronger than I actually am. I paddled out though. Truth be told I was nervous. It’s been a year since I was on a surfboard and I was much stronger then. What if I couldn’t catch a wave? What if I fell off and had a hard time recovering? I am still embarrassed by my weakness.

Luckily, I caught a wave relatively quickly. The feeling of riding a wave again, of being on that surfboard and feeling he water rush beneath me, was amazing. I was so happy.

I caught quite a few waves, and I fell off a few times as well. I tired quickly and missed some truly awesome rides because I was just too tired to paddle into them any longer. But I did ride some good ones.

What made it even better was that I could look to the beach any time and see Carey lying in the sun, watching me. She didn’t look away once. I have to tell you, people, I am amazing daily at her love and support of me.

She told me later that she was really worried it would be too hard for me, that I wasn’t recovered enough, and that I would be disappointed. She, literally, clapped for joy when she saw me catch a wave and ride it in.

Finally, though, I tired beyond my ability to continue. I wearily paddled in and lay next to Carey on the towel. I had managed to surf for an entire, whopping, hour. That’s right; one hour. I used to stay in the water all day, but all I can mange right now is an hour.

I am pleased, though. I got out there. I rode the wave. I was, truthfully, afraid. I conquered that fear, though, and was very pleased with the result.

So, after drying off, Carey and I realized we had very little time left, so we rushed back to the hotel, showered, and left to pick up our daughter.

What a great night and day. Now that I know I can, at least a little, surf again – I have made tentative plans with my brother-in-law to go surfing next weekend. This time, though, we’ll be bringing the kids and let them surf.

Bald Binary Biker

Yes, I am bald. (see pictures below)

My recent battle with cancer and my chemotherapy has taken its toll on my scalp. The drug I was given for chemotherapy, cisplatin, is not supposed to cause copious hair loss, but it has been known to happen. In my case, my hair was thinning drastically. I would wake up every day with the pillow covered in hair. My shower drain was clogged after every shower. I had to clean my brush out daily.

My hair wasn’t falling out in clumps like you see in the movies or like other cancer patients have experienced; it was thinning at a fantastic rate. I found myself last week staring in the mirror and seeing a bunch of new growth and my old, long hair, at the same time on my scalp. Once the long hair had fallen out, new and healthy hair was growing in its place. I need my hair to be healthy and the same length towards the end of the year for my wedding, so I decided to shave my head and start over.

I was going to coordinate a charity for my scalping – something to promote awareness of childhood cancer – but my hair was falling out so fast that I didn’t have time to wait for the event to solidify.

But let’s take a minute to talk to about cancer in our children. If you’re like me, you never gave it much thought. You donated, perhaps, when the mood suited you. You clucked and shook your head at the tragedy of it all as you watched the television commercials promoting awareness. That is, you stayed tuned to the channel as long as others were in the room; you didn’t want to seem insensitive after all. When you were alone, though, you probably either changed the channel or found some other way to distract yourself while the commercial was on – anything to avoid the uncomfortable feeling, the choked up feeling you knew you would get if you watched.

You had a choice – you could ignore cancer and the effects it has on children. I had that same choice and I exercised it regularly. Not any longer. This past year has shown me how truly horrific cancer is and how adversely it impacts an entire family.

I can’t imagine the strength necessary for parents to watch their child go through chemotherapy. Through radiation therapy. I can’t imagine how much fortitude and optimism a family has to maintain when a child is suddenly fighting not for a favorite toy but for life.

I struggle with the knowledge that the hell I went through; weight loss, surgery, pain, hospitalization, puking, nausea, loss of appetite, loss of hair, loss of memory and slowing of synaptic firings, and more. I struggle not for me – I am an adult, I am educated. I knew what to expect. I could, and did, find peace with it because I understood completely the necessity of it.

I struggle with the thought that a child, barley old enough to ride a bike, who has only seen the ocean a couple of times, who has never flown in an airplane, has to go through what I did and more. I, literally, cry, at the thought of someone’s baby struggling to survive through the treatments. My heart bursts when I think of the parents and how they have to smile and provide positivity for that child even as their hearts and souls scream out at the injustice of it all – as they look on helpless to do anything other than just BE there.

So, while I couldn’t raise money for cancer research with my hair scalping, maybe I can raise some awareness here on my blog. I do have readers from all over the world; hundreds of you. All I ask is that just for one moment you put yourself in the shoes of a parent who has to watch his daughter or son fight for life against cancer. What if it were your child? Don’t abstract it – bring it close to home. Feel the pain, if only for a moment, and realize that what you are feeling is just a drop in the bucket compared to reality.

Remember that feeling and do something about it. No child deserves this disease. No family should have to deal with it. Contribute – find a way to make a difference. Start here: http://www.volunteermatch.org/ . Find ways to help cancer patients in your area. Find ways to donate time and money. Make it happen. Cancer is indiscriminate and it COULD be you – or your child – or someone you know.

OK – my hair scalping . . . On Saturday I went to my brother’s house and let all his kids and my kids have fun scalping me. I pretended like it was painful and very sad to me – the kids loved “torturing” me. So, without further adieu, here is the scalping of Ron Sparks:


The tools of my scalping!


Me just before the tragic event . . .


My son Christopher takes the first cut . . .


My daughter Ashlee takes the second cut . . .


My nephew Anthony . . .


My nephew Ellis . . .


My niece Leilani giggled the whole time . . .


My nephew Cameron . . .


My nephew Jose . . .


Even Carey got in on the fun!


I’m a confused mess! Time to shave me!


The first swipe gave me a reverse mohawk!


About this time I wanted to rewind the clock and get my long hair back.


Yes, that’s a checkerboard pattern on my skull. My brother was having entirely too much fun shaving my head.


Almost done!


Closer . . .


He’s not only a Fun Guy – he’s BALD!


Look at all this hair! What can I do with it?


I know – BURN it in a symbolic gesture of closure!


Then I can have my 39th Birthday cake!


And then I can go to the beach to get sun on my bald scalp!


And finally, I can dress up and go see a friends’ baby get baptized!

All in all, it was a lot of fun, but a little shocking to get this done. Having had long hair for so long the new bald look takes some getting used to. Still, if you’re going to have to shave your head, you may as well have fun in the doing of it! I had a choice – I could have left my hair long and dealt with the thinness. Many cancer patients don’t have that choice.

Remember the children, folks; find a way to contribute your time and money to help.

Another Clean Bill of Health

Earlier this week, I had to go see my ENY surgeon for the first time in 3 months. This is the doctor who sliced open a 10-inch section of my neck and removed the cancerous lymph nodes. He’s also the doctor who initially diagnosed me with cancer.

I still have only limited feeling on the left side of my face as a result of the “radical neck dissection” that he was forced to perform to remove the cancer. I assumed my appointment was to talk about my slowly-regenerating nerves, but I was wrong.

Apparently, I need to go back to him every 2 months for 2 years so they can visually inspect my tonsils and voice box for lumps or obvious signs of cancer recurrence. They use this:

The doctor starts by spraying my nose with an industrial strength numbing agent. He comes back a few minutes later and snakes that fiber optic cable up my nose, through the back of my throat, and twists and turns it to look at my trouble spots. It works kind of like this:

Not the most comfortable feeling in the world, but it’s the minor price I pay to stay on top of my cancer treatment. This is preventative therapy for me – because if we do find trouble spots we can deal with them before they turn into big problems.

The good news – I have no visible signs of cancer in my throat and voice box.

That’s twice I’ve gotten a clean bill of health – first from the PET scan and now from this examination. I feel very happy and fortunate.

First Workout Post Cancer Treatment


Ever since I had my feeding tube removed, I have been waiting impatiently to go back to the gym. The doctors said I needed to wait at least 2 weeks after the removal of the tube before I could start working out again. Two weeks is actually tomorrow, but I went ahead and started back at the gym today.

Before I was diagnosed, I was a member of Metro Fitness, a 24/7 gym located in downtown Orlando. I suspended my membership once I found out I was in for a rough ride of radiation and chemotherapy – but I always looked longingly at the building as I drove through downtown. Today, I finally went back in.

Carey decided she wanted to join as well. She wants to firm up before our wedding in October. That said, we went to Target earlier in the week and bought some new workout clothes for both of us in anticipation of going to the gym today. I needed new clothes because I had lost so much weight. With a 45-pound weight loss, none of my old exercise clothes fitted any longer. Carey hadn’t been to a gym in so long that she didn’t really have any workout clothes.

After work today, we drove straight to the gym. We knew that if we went home we’d find some reason to stay and not work out tonight. After joining and dressing out, we started to work out.

Arrogantly, I told Carey we would start slow. We didn’t want to hurt ourselves too badly by overdoing it. It’s a common mistake when starting a workout program. I said this like I was some kind of expert, but inwardly I was thinking “I’m just saying this for Carey so she won’t feel bad for not being able to keep up.”

Ha. Little did I know. Carey was fine. We set a decent pace – using both free weights and the machines, as well as ending the workout on the treadmills. She did tire out more quickly than she thought she would – but by that time all my arrogance was gone. Allow me to explain.

Before cancer, I was routinely used 40-pound dumbbells to work out my biceps. I would do 5 sets of 10. It hurt by the fifth set, but I could do them.

Before cancer, I routinely bench pressed about 185-pounds for five sets of 10. I didn’t know what my maximum lift was, but I assumed it would be close to 210lbs or so. Not bad for a guy who is 5″8′.

Before cancer, I could run on the elliptical for an hour. My legs would be jelly when I was done, but I was ready to go again the next day.

I had a hard reality check tonight.

My dumbbell curls were with 15-pound weights. 5 sets if 10.

My bench press was a mere 95-pounds. One set of 10.

My butterfly curls were 3 sets of 10 at 5o-pounds.

I could only go 22-minutes on the elliptical.

In short, folks, I am WEAK. I knew I had lost a lot of muscle mass. I just didn’t realize how much. I was so disappointed in myself and, frankly, a little embarrassed. Look at the picture above – I don’t LOOK like a man who just spent the last 6 months fighting for his life against an indiscriminate killer. I don’t LOOK like I should be as weak as I am.

I was convinced that the other guys at the gym were looking at me and laughing. Of course, nothing is further from the truth, but I was embarrassed by my weakness.

A couple of things made me feel better, though. First, I was working out with my love. It’s yet another new thing we are doing together and it’s great.

Second, I was overweight before and had a hard time losing my excess weight. Now, I am at an ideal weight and have little body fat compared to what I used to have. I am “starting over.” If I persevere and take care, I can put on muscle, reduce fat, and get healthier. I am no longer at a disadvantage from 30% body fat.

I have a lot of work to do to get my strength back, but I am looking forward to the challenge. I have to get some endurance built up quickly because I am starting surfing again in a couple of weeks. I need to be able to swim and stay afloat!

Emerging from the Ashes Reborn

On Monday, yesterday, I went in for my first post-treatment PET scan. This scan will tell me if the chemotherapy and radiation did the job on my cancer. Did we get it? Were we successful? Do I still have cancer? Will I have to go through another round of therapy in the immediate future?

As you can imagine, I was anxious about this scan. This scan is the culmination of all the pain, discomfort, and inconvenience I have been forced to endure since I was first diagnosed with Stage 3 squamous cell carcinoma of the head and neck with a left tonsorial primary. This scan would tell me if all of this has been in vain or not.

Carey and I woke early; we had to be at the hospital at the hospital at 8:30am. Once there, I was ushered into a small room and asked a few questions. Had I consumed alcohol in the past 12 hours? Had I eaten anything? Was I allergic to anything? Was I claustrophobic? Was I diabetic?

That last question was the tricky one. As you know, I am officially diabetic but since I have lost so much weight I have had no diabetic symptoms. In order to get the PET scan my blood sugar had to be less than 160. I was nervous because I had eaten a LOT of sugary cake the night before for Ashlee’s birthday.

I needn’t have worried. I am not diabetic anymore apparently. My fasting blood sugar, after 12 hours of not eating, was a mere 93. That’s completely normal – what you would expect from anyone.

Once my blood sugar was no longer an issue, the nurse brought in the radioactive sugar that they were to inject in my veins. It was housed in a tungsten container and the nurse very carefully handled it as she injected it into my veins. This radioactive liquid would spread through my body, creating the contrast in my tissues that the PET scan needed to see into my body.

Additionally, I was given a “contrast” liquid to swallow that would perform a similar function on my stomach and intestines. It tasted very mineral-ey.

Then, I was forced to lie in the dark for 90 minutes. I couldn’t speak. Couldn’t move. Any overt muscular activity would force the radioactive liquid to rush to the area being used and would skew the results of the PET scan. It was torture for me; Carey was sitting right next to me and I couldn’t speak or move at all.

Finally, I was led back to the imaging room and strapped down in the machine. The actual scans took about 30 minutes. Once completed, I was warned to stay at least 6 feet away from pregnant women and children for 12 hours as I was radioactive. We got a lot of mileage out of that as a joke all day.

After the scans, my anxiety was higher than ever. I put on a positive face for everyone, but I was worried. This was the moment of truth. I really didn’t think I could handle another round of chemotherapy and radiation – not yet anyway. I still haven’t recovered my strength. I haven’t had a chance to start living my life again – to remember what it is about myself that I love and bring it back again.

I’m not the same man that I was when this ordeal started. In some ways I am a stronger, better, man. In other ways, though, I am less than I was. I need to find my humor, my zest, my love of life again. I need, in essence, to emerge from survival mode and start really living again. I didn’t let this cancer and treatment completely shut me down – I did propose to the love of my life. I did move to a new house. I did write and reflect on myself and my place in the universe. But I lost some of my lightheartedness. Some of my zeal. I need to get some of that back before I can even begin to contemplate doing this again.

So you can imagine how anxious I was.

So this morning I arrived to work as normal. About 11:30am, though, I received a call from my oncologist. His message? My scans had come back, they had been analyzed.

I HAVE NO VISIBLE CANCER!

This is FANTASTIC news. I have emerged reborn. Like the legendary phoenix, I have risen from the ashes of my troubled and diseased past as a new being – full of life and potential.

Carey actually squealed loudly in the office when I told her. Throwing propriety to the wind, she cried and kissed me and held me for minutes. Just held me. No words were said except a tearful, whispered, “I love you, baby.”

I was in shock – I still am. It’s hard to believe. I am realistic – this is just the first of many scans I will have to go through. The cancer could still be there, just too small to show up on the scanner at this time. Still, though, we have reason to hope. I have no reason NOT to start living fully again.

I told myself months ago that should I emerge from this successfully I would get a new tattoo. I am getting, on my left arm, a tattoo of a phoenix. This will symbolize my rebirth – my emergence from the ashes of cancer into a new life filled with hope and potential.

This is the design I am considering. What do you think?

I will get this tattoo, or one similar, in the next 1-2 weeks.

Hopefully this will close this chapter of my life and I can move past. Regardless of how it ultimately turns out, I am a very lucky man. I have a new lease on life, for however long it shall be. I have a wonderful fiance, three amazing children, a loving and caring family, great friends, and a good job filled with people who care for me.

Thank you all for standing by me as I went through this. You truly made a difference. I love you all.

Binary’s Kids

I have blogged a lot about myself, my cancer, my life, my love (Carey), and everything in between. I mention my kids fairly frequently, but I haven’t spoken too much about them. In the past it was because they were younger and I didn’t want to expose them on the web. Now that they’re older, I think I’ll introduce you to them, by age.

Matthew

Matthew is 15-years-old and is in his first year of high school. As you can see from the picture above, he loves to play the guitar. That’s my Dean electric he’s playing, although I suppose it’s really his now – he plays it non-stop and I am usually picking on the acoustic guitar.

Matthew is an amazing guitar player. He took, literally, garage lessons from a friend of the family for a few months a couple of years ago but he’s otherwise self-taught. He has far surpassed my ability to play guitar. He’s like his grandfather (my father). My father has always been a great guitar player and, while the talent skipped a generation with me, Matthew inherited it.

Matthew was on the wrestling team for his school this year (the season is over now). This was his first year of participating in school athletics and he really enjoyed it. He made an impression on the coaches with his dedication and commitment.

Matthew’s also in a program called AVID. It’s a scholastic program where fairly average students with high potential get a chance to push themselves. Matthew is extremely intelligent, but has always struggled with school – mostly because if focus and interest. No longer – in the AVID program, Matthew is in all Honors and AP classes. He’s doing great – he averages a 3.0 – 3.5 GPA, although lately he’s been struggling more because he missed a lot of work when he was sick with the flu last month.

Matthew also was chosen to participate in the People to People Ambassador program. If we can raise enough money, he’s going to Japan this summer to represent his town. We’re coming down to the wire and don’t really have enough money yet – so if you want to donate, drop me an email and I’ll work it out with ya.

Matthew has an amazing sense of humor – he finds EVERYTHING funny. He also has a big heart – he looks out for his younger brother and sister. He befriends everyone and gives everyone the benefit of the doubt. He’s generally easy-going, laid back, and just a joy to be around.

He’s at an age where he’s becoming a man and the typical pushing of boundaries is occurring, but Matthew, the amazing young man that he is, is never disrespectful. He knows what he wants, approaches me, and gives me an intelligent argument or explanation. We have very few issues – I used to worry that him and I would have major issues the way my father and I did at that age, but we seem to have worked it out and share a mutual respect and admiration for each other.

Christopher

Christopher is my 11-year, fifth-grade genius. He plays a mean keyboard and is constantly amazing me with what he knows. Unlike his brother, Christopher has never had a single lesson. He is entirely self-taught – so you can imagine how surprised I am when he busts out Beethoven or Van Halen on the keyboard while smiling smugly at me as I stand there jaws agape.

Christopher is also an incredible writer. He inherited my talent for the written word. He wrote his first real story, “The Adventures of Glowboy” when he was in third grade. It reads like it was written by a high school student. By contrast, I wrote my first story in sixth grade, it was titled “Knight and Squire.”

Christopher is a straight A student – and has never had to work hard in academics. I worry about him a little when he hits middle school next year – classes will be a lot harder. I know he’s going to do fine (he’ll probably still get all As and Bs), but I wonder how he’ll feel about having to step it up to keep up.

It’s not uncommon to have completely random facts come out of Christopher for no good reason. He’s like me in that way. He’ll pipe up out of nowhere and tell me it took 644 licks to get to the center of his Tootsie Roll pop. Or he’ll get angry at his brother and tell him he’s lucky that the “Code of Hammurabi” doesn’t apply any more.

An example of how intelligent he is. he knows the speed of light. His middle name is “Orion” after my favorite constellation. One of his big Christmas presents was a 130-in-one electronics kit. He spends hours making Morse code generators, AM radios, and tweeters on that kit.

When his older brother needs help on the computer he goes to Christopher. Christopher hooks up all the electronics in the house – I don’t even supervise any more. He’s a natural scientist.

But that’s not all – he’s also a nature and animal lover. He is the primary trainer of Cassie, our Beagle. He can spend hours in the woods or walking by himself, and loves to go camping. He’s quite a character – he loves nature and hates being away from his technology. heh

Christopher is also my “toughie.” You only know he’s sick when it’s really bad. He also doesn’t talk a lot unless he’s in a really goofy mood. He’s quiet, introspective, and likes to hold himself a little bit on the outside of things. Like a good writer, he observes a lot and participates when he wants to. He’s not the social butterfly Matthew is. He has a few friends and doesn’t need a lot of fanfare or attention from them.

Christopher is also my sensitive guy. He is devastated whenever he gets caught doing something wrong and feels bad. Counter that with the fact that he’s also the biggest practical joker in the family and you have a recipe for disaster. He scares the hell out of someone then feels so bad about it he gets upset. heh

Christopher’s latest thing, which reminds me so much of myself when I was his age, is that he likes to wander the neighborhood alone. He’ll grab his cell phone and tell me he’s going to roam the neighborhood. He just spends time with himself and walks and thinks and has adventures in his head. Just like Dad.

Ashlee

Ashlee is my 10-year-old fashion maven. She turns 11 next week and is in fifth grade with Christopher (although not in the same class). She is a conscientious and loving little girl who enjoys attention and snuggling with me or with her mother on the couch. She is not competitive like Matthew and Christopher are, so sometimes it’s hard for her and I to communicate. With the boys – everything is a sarcastic game between us. With Ashlee, I have to be more sensitive. She thinks I pick on her when I treat her the way I treat the boys.

I have learned that this is a key difference between little boys and little girls – and in the year and a half I’ve been with Carey and Ashlee I have learned how to interact with her – although I still tease her a little like I do the boys.

Ashlee and I bonded very quickly over our love of science fiction. We watch sci-fi on TV together all the time. She particularly loves the new Knight Rider and won’t let me delete it from the DVR until she is done watching it – twice. Right now she’s annoyed at me because I got the first season of Eureka from Netflix and won’t let her watch them without me.

Ashlee loves to color – but not to draw. She has a great sense of color coordination and regularly brings me colorings she has done. She has a way of putting two colors together that I never would have thought would have looked good – but they do.

We have this game on the Wii, the Animal Crossing game I blog about that Carey and I play so often. Ashlee drives me nuts when she plays – it’s a perfect example of how non-competitive she is. When Carey and I play, we’re trying to get as much “money” as we can so we can get a bigger house or better furniture. When Ashlee plays, she’ll spend hour upon hour designing new outfits for her characters. And she’s good at it too.

Ashlee is also my little animal lover. Ever since she was introduced to Cassie (our beagle) she’s became Cassie’s primary caregiver. She takes Cassie for walks, feeds her, plays with her, and begs weekly for permission to let Cassie sleep with her.

Ashlee used to struggle in school, but not any longer. She’s a very strong-willed child and went to a magnet school when she was younger that held her back. Consequently, she’s struggled ever since with keeping up at grade level and convinced herself that she’s not bright.

Now that she has two brothers who are great students and is in a great school she has begun to see that she IS bright. She keeps up with the boys – knows things they don’t know. Her confidence in herself has grown significantly and it shows in her grades. She’s a solid B performer in school now. I’m very proud of her.

Ashlee has an infectious laugh and a face full of expression. It’s easy to see when she’s happy or when she’s upset. She knows it too and, like most women, is becoming an expert at wrapping men around her finger. She certainly has MY number – I can rarely deny her anything.

She amazes me at how well she’s integrated into our family. Before I entered her life, she was an only child. It was her and mom against the world. I turned that world upside down very quickly – in the space of a little under a year I entered her life and then (gasp) moved myself and two (ewww) boys in with her.

She now has a father-figure in her life for the first time and two brothers. Out of everyone in our family – she’s had the biggest adjustment to make. She went from being the center of the world to being a member of a family – no more and no less special than anyone else. She has adjusted beautifully and I am so proud and amazed by her – not many kids would have transitioned into a family as well as she did.

Cassie

Cassie isn’t a child – but she is a member of our family. I despise statements from people who say their dog is just like a child or is their child. No – it’s not. It’s a dog and is nothing like a child. Still, I suppose they are trying to express how much they love their dog – and I suppose I can understand that. We all love Cassie.

Cassie is a 2-year-old full bred Beagle. She’s a wonderful dog. She’s playful, intelligent, and just a joy to be around. When her feelings are hurt it just breaks your heart – her ears and tail droop and she looks at you with big soulful eyes. It’s hard to remain stern with her when she pulls “the look” on me, but I have to.

She is a terror on the leash. Like most bloodhounds, her nose leads her and she can’t walk in a straight line to save her life. She chokes herself half to death on a leash – she has to wear herself out before she’ll walk normally.

She loves everyone and is the worst guard dog in the world. She is not a digger, but she does love to chew. I have a constant supply of pig hooves for her to munch on else she might chew on a shoe or two.

She’s a very social dog, but independent as well. It’s a Beagle trait. She loves to sleep on a cough with someone next to her or in bed with someone – but that’s a rare treat for her. She’s crate trained and loves sleeping in her crate as well – it’s her little den. It’s our policy that we never go into her den after her – she needs to think of it as safe haven away from everything – even us.

Conclusion

There you have it folks. My kids and my dog. I have three wonderful, amazing kids and I am so proud of them. They have been by my side every day as I go through my cancer treatments. I get so much joy and strength from them. They have, each of them, cared for me and been by my side every step of the way. They haven’t shied away or tried to avoid me as I deal with cancer. They embrace me and love me – I am their hero, their father.

I am a lucky man to have such wonderful children. I can’t wait to see what amazing adults they grow into. Already they are more sensitive, compassionate, and mature than I could have ever imagined.

I’m Not A Cyborg Anymore!

Today I had my PEG tube removed. It was not quite as traumatic as getting it inserted, but it did have its moments.

The alarm clock went off at 5:00am, because I was told to be there by 6:30am. I didn’t hear it go off, all I remember is being shoved forceful from the bed by Carey when she “claims” I didn’t respond to her “gentle” attempts to rouse me. Personally, I think she woke up in a pissy mood and took it out on me. Of course, I can’t prove it. She also claims I snore but as I am not conscious enough to witness my own snoring it’s her word against mine. Believe what you will, people.

Weary, tired, and strangely sore on my shoulder (she claims she didn’t punch me) we drove to Winter Park Hospital. We arrived on time and checked in. And we sat for two hours.

I kind of expected it, so I wasn’t too upset at that. Carey napped against my shoulder and I read a book on my iPhone. Amazon has released a Kindle app for the iPhone, so I buy books online and read them on my phone. Very cool – although I have to be careful not to break the bank buying books now because I read so quickly.

So I was finally admitted back to the room to get my tube removed. The nurses and doctor all remembered me from when I got the tube inserted in the first place. They were, like most people, frankly amazed at how well I look. I don’t look like a cancer patient who went through months of chemo and radiation. Again, I stressed that I don’t know what I was supposed to look like, and I don’t know why I look so well. But I am glad I apparently came through this round so well.

They asked me to take off my shirt and they examined the hole in my stomach where the tube was inserted. They were pleased with how well it looked. Most people have skin irritation and skin infection at the entry site. Truthfully – I have had both, but I learned to take really good care of it. I clean it sometimes twice daily and make sure it has plenty of anti-bacterial cream on it. Apparently a lot of people don’t do that and the nurses were expecting to see a caked, bloodied mess.

So they took an x-rayto make sure there were no obstructions. They were surprised that the staples were still there. When they removed the staple bindings 6 weeks ago, they were supposed to fall into my stomach and get passed. They were still clinging to my stomach lining. They were not unduly concerned – it happens to some people and is harmless. Just not often enough to be completely normal.

After the x-ray, the technician deflated the bladder in the tube. The tube was held in my stomach by a saline-filled bladder that prevented it from being pulled out. The saline looked like beer – it was a dark amber. I asked if they could pour it in a pilsner and had it over.

After the bladder was deflated, the nurse asked me if I wanted anaesthesia to numb me before the removed it. Remembering the hell I went through as a result of pain medication when they put it in, I said no – just yank it out. So they did.

I was told to exhale hard and, as I did so, the nurse put one hand on my stomach near the hole and the other grabbed the base of the tube as it exited the hole. With sharp force, he pulled it out.

It hurt. Like hell.

A geyser of blood and stomach acid shot from my belly and flew about three feet. My wound was burning from the pain and I had the oddest sensation. I felt some glimmer of “phantom limb syndrome.” I felt like something was missing from me and at the same time I could still feel the tube inside me – even though it was gone. It was most disconcerting and it took me a few moments to recover.

I was bleeding profusely and the nurses were a little concerned. It was not supposed to bleed that much. Well duh, I said, you yanked it out like my belly was a wall socket – it made an audible POP as it exited my body. That can’t be good.

Eventually the bleeding slowed and they took another X-Ray. One of the three staples had fallen and was gone. so now I have 2 staples still in my stomach. I am OK with it as long as I don’t get stopped every time I go through airport security.

So here I am, after recovering for a bit at the hospital. I am really sore, I have a bandage over my hole. I have to be careful how much I eat for the next couple of days. I am like that cartoon character that gets shot full of holes and then drinks a glass of water. The water pours out of me, literally, once my stomach gets too full.

I was told that the stomach is very elastic and should close within 4 hours. The abdominal wail should heal in about 2 weeks and the epidermis layer should heal in about 3-4 weeks.

That means in 2 weeks I can work out, lightly, again. In 3-4 weeks I can start surfing again.

That’s a chapter that is over. I went through hell these past few months to rid myself of this cancer. I feel confident that we got it. In six days I get my next set of scans that will conform our success – then I do it again 3 months after that. If all goes well, I’ll be in a closely-monitored state for a few years but hopefully I will remain cancer-free.

And I’m not a cyborg anymore!

An Odd Dream

I don’t usually remember my dreams. Some people do; Carey can tell me every morning what she dreamed about the night before. That rarely happens to me. So when I have a really cool dream that I remember, it’s a big deal.

Last night I had a really cool dream. I just wish I could illustrate it as well as write it – it was so cool. And weird.

Allow me to tell you about it . . . (wavy dream sequence starting…)

I live in a duplex. It’s an old duplex; the paint is chipping and the metal gate is rusted. But it’s home. Next to me, in the other unit, lives three old people. One man and two ladies. They are all somewhere between 70 and 80 years of age. Old, but still mobile.

There is a small open-air courtyard between our two units. The sun can shine through on cloudless days – of which there are plenty here in Florida, next to the water.

Oh, didn’t I tell you? My duplex backs up against a river – a BIG river. When I walk into the courtyard, the only thing keeping me from falling in the river is a waist-high rusted metal fence.

It’s great living on the water; I get to fish all the time. I have a big fishing pole with a lure that has 6 hooks on it. It takes me a few tries, but I manage to get raw hot dog on all 6 hooks, and I am able to cast it out far into the swiftly moving river.

The fishing pole almost slips from my hand a few times so I prop it up against the metal fence and recast. This time I cast perfectly and almost immediately I feel a massive tug on the line. I’ve caught a big one! Maybe it’s a catfish. Maybe it’s a ray – or even a shark!

I struggle to reel it in as the sun goes behind a cloud, but reel it in I do. The unseen fish puts up a huge fight, but I slowly bring it closer and closer to the shore. When I have the fish less than 20 feet from me, a monstrous bird lands in the water!

This bird is huge! It looks a lot like one of Dr. Seuss’ birds in his books. It has long skinny legs, an absurdly pear-shaped body, with a tiny head on top. Oh, and it has a tuft of hair on top.

The bird looks interestedly at whatever is struggling at the end of my line. Very casually, the bird walks in front of me, blocking my view of where the fish is. Looking back at me smugly, the bird opens its mouth, which is now huge, and scoops up whatever is in the water and swallows it.

I am helpless to do anything. I try to call out to the bird to scare it away, but for some reason I have no voice. Now, my fishing line goes down the bird’s gullet. I could cut the line, but I don’t want the bird to die! What do I do?

Surprisingly, the old man who lives next door walks out of his house and the bird wades through the water and up to him. They stare at each other for a second.

Then I am shocked, and amazed! The old man, hunched and decrepit, leans forward and displays a mouth so big that it swallows up the bird in one gulp!

Now I am really beside myself. The fish ate the bait, who was eaten by the bird, who was swallowed by the old man. My fishing line is now dangling from the old man’s mouth to my fishing rod.

Frantically, I follow the old man into his apartment, where he immediately sits at the dining room table as the two old ladies who live there bring him heaping plates of food. He starts eating, with my fishing line still snaking from his mouth to my reel. How does he do it? How can he eat so much?

One of the old ladies offers me a red-trimmed china plate filled with raw, uncooked, sausage. I decline politely and she shrugs and eats it herself.

Producing a belch, the old man looks up at me and says “Now you know our secret.”

I nod, even though I have no idea what he is talking about.

The old man grabs the line dangling from his mouth, “I guess you want this back?”

Again, I nod but can say nothing.

Grunting, the old man opens his mouth and tugs on the line. I can see all the way down his throat. Covered in half-eaten food, something is coming up. My fish?

No! Attached to my fishing line is not a fish, but a large cuckoo clock! I had caught a cuckoo clock and not a fish after all.

The old man wipes excess food and juice from the clock and hands it to me. I take it and walk out of his apartment and back to my own – where I hang the clock on my wall. After all – that’s where it belongs – that’s where it is every day. In fact – there’s an outline on the wall because it’s hung there for so long.

(wavy dream sequence ending)

Weird. I thought I caught a fish, that was swallowed by a bird, who was in turn swallowed by an old man, who in turn pulled a cuckoo clock from his belly, which I hung on my wall because what else are you supposed to do with a cuckoo clock?

What a great dream.

First Day Back to Work!

Today was my first day back in the office. I won’t lie, I was nervous going in. I didn’t know what to expect. Would I be strong enough to complete the day? Would I be able to think on my feet and jump back into the mix? Was I still welcome?

I kept these thoughts to myself as we drove in, but Carey knew I was a little anxious.

When I got the office, people were very surprised to see me. I got warm welcomes, hugs, and a few hearty slaps on the back. Everyone was amazed at how skinny I am now – they were astounded at how well I looked. I think they expected me to come back completely emaciated and hairless. They didn’t expect to see me happy, energetic, and full of life.

Truth be told – I felt good. To be back in my working environment, surrounded by adults and having adult conversation was the most amazing concept to me. Of course, I spent a lot of time going office-to-office and repeating the same mantra to the questions asked:

  • Yes, I’m feeling ok.
  • I’m getting stronger every day.
  • No, I didn’t lose all my hair, but it did thin out a lot.
  • I still have a feeding tube in my belly. See the outline on my shirt?
  • I’m back full time.
  • … and more.

I didn’t begrudge these questions. They were all sincere – and this is the team of people who always, daily, asked Carey how I was doing and if they could help in any way. People were a little disconcerted at how “healthy” I look considering what I just went through.

If I look healthy – it’s because I did what the doctors told me. I took the time I needed. I rested when I should rest. I started activity again when it was time. I took all my medicines and I was an obedient patient. Still, there’s more to it. Many people come out of chemo and radiation to the head and neck much worse off then I.

So what is my secret? I don’t know. It’s a combination of the X factor of positive attitude, my age, and the excellent health care I received during treatment. I don’t know what I did and I certainly don’t know that if I ever have to go through this again that I’ll fare so well.

So I spent the first half of the day re-installing all of my developer tools on my laptop. I hadn’t been approached about what work I could be focusing on, though, and I was feeling a little nervous. I took the initiative to round up with managers and architects to see what projects were in the hopper- but I wasn’t sure where I should go.

I was very pleased when more than one team expressed an interest in having me work with them. In the end, I have 1-2 projects I’ll be helping with in the immediate term – and we’ll see where I land afterwards.

Lunch was AWESOME. Allow me to explain:

I have been feeding using my tube for 3 months now. 99.9% of my nutrition has been poured in my belly and, frankly, I am tired of it. So Saturday I decided to just stop feeding in my tube. I have been eating like the rest of you. Of course, I need to keep a lot of water handy as I have no saliva to speak of yet, and I can eat only soft foods, but I am now off my feeding tube.

So Carey and I went to Joe’s Crab Shack for lunch and I had the crawfish etouffee. Oh my GOD, it was DELICIOUS! I couldn’t finish it, but I was making really disturbing sounds as I slurped up the gumbo. Carey was almost embarrassed and patrons at the next table covered their children’s ears. It was that good.

I’m going back on Thursday. I want some more!

Anyway – by 4:00pm I was exhausted. I could barely keep my eyes open. I made it through to 5:00pm, but I clearly have some more strength to regain. I am looking forward to it.

It’s great to be back to work.