Short blog this morning….

Short blog this morning….

We’re looking to get married on October 11th, 2009. That’s 278 days away. That’s a lot of days, to me. Apparently, though, it’s not enough time and we’re already behind on everything!
For months he had been sending her images of rings to look at and rate. Engagement rings. Did she like solitaires? Three-stone rings? What type of cut did she prefer? He sent hundreds of images to her, gleaned from just about every internet-friendly jeweler out there.
As the weeks, and the ratings, went on he slowly got a feel for exactly what kind of ring she liked. She liked three-stone princess cut with a platinum or white gold ring. She knew he was going to propose to her one day, probably in the spring, but she didn’t know exactly when or how he would do it.
Indeed, he had made it a joke. He had a lot to plan for, he told her. Getting the clowns and circus midgets lined up to be a part of the proposal was no small task. He relentlessly referred to the clowns and the complicated setup so often that she actually began to worry that he might be serious. Worried enough to pull him aside one day and tell him in no uncertain terms that if he brought midgets to propose to her she would be extremely unhappy.
Believe it or not, this led to an actual argument between them. Not a yelling argument, they’ve never done that, but a stern discussion. He told her very clearly that the only thing that was entirely his in a wedding was the proposal. Once she agreed to marry him and they started planning a wedding they were collaborators with him being the junior partner. Weddings, obviously, were for the bride. He told her that all he had was the proposal and if wanted midgets he’d damn well brings midgets! She reluctantly acquiesced.
The midget drama set aside for the moment, he began seriously shopping for the perfect ring for his bride-to-be. After much searching, he found this:

It was perfect. Simple, elegant, and exactly the style she was looking for. He had quality diamonds set into the ring (he had done all his homework on the 4 c’s). It was what he was looking for as well. Yes – he bought that ring.
And he waited.
News Year’s Day. In the early afternoon he asked her to start the new year out right. “Let’s go to Leu Gardens,” he said, “and walk through the gardens; just you and me.” She agreed. Leu Gardens was “their place.” They went there for jazz festivals, picnics, and for date night. It would be a great way to start the new year.
He had the ring in his jacket as they walked through the gardens. He was nervous. He was weak from his extended medical issues. He was looking for the perfect place to propose to her, but nothing seemed right. He knew that it had to feel just right or he would not go through with the proposal. They stopped in front of the plantation house and looked at the gorgeous oak tree in the front yard.
“I’d love to get married in front of that tree,” she said.
He nodded; he had been thinking the same thing. It was beautiful. It would be a perfect place for a wedding:
He was tired, so he led her to the gazebo to sit and rest for a moment. There was no one around. They were alone, in the gazebo, surrounded by roses. It almost felt right, but not quite.
They sat there and chatted for a few moments. Then, she grabbed his arm and pointed, “Look at that!”
Right next to them, not 10 feet away, a beautiful cardinal had landed and was looking at them.
The radiant red of a cardinal is a symbol for us to recognize the gifts in our hearts that we have to give to others in love and friendship.
At that same moment, the sun broke through the clouds and the entire landscape, the roses, and her, were lit up. This was the moment. He knew it as surely as he knew that he could not let this moment slip away.
He dropped to one knee in front of her, in that gazebo, in that rose garden; the warmth of the sun embraced them and the cardinal watched passively from his vantage point a few feet away.
She knew immediately what was happening. Her eyes grew wide and a hand flew up to her lips. She said “ohmygod….ohmygod” as he slowly opened the case holding the ring and presented it to her.
What followed was a very romantic proposal, meant only for the ears of the two lovers and, therefore, cannot be shared here. There were tears, laughter, promises of undying love and devotion. There was an entire lifetime shared in the short moment of that proposal.
She said yes; she would marry him. She would become his wife. He would become her husband. Carey Lynn Dobson would become the wife of Ronald Edward Sparks.
Some time later, as they walked hand-in-hand through the gardens in post-proposal bliss, she looked at him smugly from the corner of her eye and said “And there were no midgets.”
I got my feeding tube inserted last Thursday. The procedure was nothing at all like what I described in my previous post. It was much more traumatic and painful.
Of course it was – this is me we’re talking about here.
So on Thursday I checked into the hospital for my PEG tub insertion. I was taken to the radiology department, prepped, and wheeled back into the room. I asked if I was to be sedated and they said “it will be conscious sedation – you won’t really feel or remember anything.”
Ha. I remember everything. I felt everything.
They pumped me full of versid – a drug that supposedly causes amnesia and relaxation. I suppose it relaxed me but it did not cause me to forget anything. No – my lot this time was to be fully aware!
Next they took a long hose and inserted it through my nose into the back of my throat. I needed to swallow it so they could use the tube to blow air into my belly and inflate my stomach. That was a nightmare. I gagged, spit, threw up – you name it. They had the hardest time getting that tube into my belly. I don’t know how sword swallowers do it.
Eventually they got it into me and blew my belly full of air. I immediately belched it out. Of all the burps in all the world – that was easily among the top 10. It was so loud and long, had so many subtle melodies to it, that I swear children in Portugal were crying in awe. It was the mother of all burps. Monks in Tibet flung themselves into fire because there was nothing left to live for – a perfect moment had just occurred.
There was a respectful silence from the doctor and staff after that, but they had to pump me up again. And I had to hold it in. Yuck.
They then used a CT scan to determine where to place the tube. I felt an immediate sharp PAIN in my gut as the shoved a needle into my abdominal wall and into my belly. They followed with a wire that pulled my abdominal wall and stomach lining together – the purpose being to prevent leakage between the two that might cause me to go septic in the future.
Then came another PAIN as they stapled them together – my abdomen and stomach. Since I don’t tolerate narcotics well – they used light doses of morphine on me.
Two more sharp pains and my stomach was well and truly stapled to my abdomen. What followed is indescribable. The doctor pulled out a huge awl – or punch – and poked a hole in my belly for the tube. Yeah – that hurt like a summbich. The tube was inserted, the bladder inflated to lock it in place, and I was told to sit up.
They said I wouldn’t remember – but I do. All of it. It was quite an experience – and now I have a feeding tube in my belly. You think that would be the end of it.
Wrong.
I ate through the tube just fine that evening. And Friday was a walk in the park. They feed me a special formula called Jeviy 1.2 through the tube.
This stuff is CHOCK full of nutrients. It is 100% nutritionally complete and looks just like baby formula. I pour that into my tube. I pretend, since I can’t taste it, that it’s different things. The first day I had Lobster and crab legs.
The only problem – insurance doesn’t cover the cost of this. These are considered “supplies” and not “medications” so I had to fork out $500.00 for a month supply. Very frustrating when you’re on disability and every penny counts. But it is what it is I suppose.
So on Friday I got through 5 cans. No problem.
On Saturday – I started my 10:00am feeding and immediately threw up! I figured it was a random thing – so I waited a few hours and tried again. Same response.
Ugh.
So I waited and tried again. Threw up again. I was getting nervous so Carey called the doctors. They forced me to go to the emergency room.
I have been in the hospital ever since. I am writing this blog from my hospital bed – with Carey beside me working on her laptop.
Apparently, my guts stopped working. Not sure why – a combination of the narcotics I was on, the trauma of the tube insertion, or something else stopped peristalsis in my body. My body stopped moving food out of my stomach and through my lower and upper intestines. I was just pouring food into my gut and it had nowhere to go.
On top of that – I was dehydrated and my kidney function was abnormal. They needed to make me poop – and but good. Hold the jokes and applause please.
So a day of laxatives and poop-inducing drugs are on my regimine. I am so tired of being here – but I suppose it’s the right thing. If I am lucky I will go home tomorrow – I will be completely devastated if I have to spend Christmas here.
Carey has been my angel – she is perfect. She doesn’t leave my side. With my grandfather in ORMC because of his recent heart attack, my family hasn’t really been able to be here and I do need someone here at all times. My throat is so sore that I can’t really communicate with the staff. Carey is handling everything for me. She is simply amazing – the perfect woman and my perfect love.
Anyway – here I am in the hospital, trying to get better so I can spend Christmas at home with my family. I feel sorry for the monks who killed themselves after the perfect belch – but some things just can’t be avoided.
Wish me luck!
Six days ago I weighed 184lbs. Today I weigh 171lbs. In the past week I’ve lost 13 pounds.
The weight loss looks good on me. My belly is flat as a pancake now. My face isn’t “plump” anymore. I don’t have a spare tire. It’s kind of nice to be right around my ideal weight.
The only problem is that I’m not losing weight in a healthy way. I’ve lost way too much weight – way too fast. I am fatigued. I am weak. I can barely walk across the house without wheezing.
I can’t keep anything down. The morbidity of my radiation treatments are catching up to me. Even water isn’t palatable any longer. Imagine your worst head cold. Think of the massive amount of slime that coats your throat as you try to clear it.
Now imagine never, ever, being able to get rid of it. That slime is your constant companion – coating your esophagus. Imagine everything, even water, tasting like slime, snot, and ashes.
That’s how I roll right now. You can understand why I’m not eating. Everything makes me gag. Everything. Even a sip of water.
This is why my doctor is ordering me on a feeding tube this week. Yes, you read correctly. On Thursday I will be admitted to the hospital, sedated, a endoscopic light put down my throat into my stomach, a hole cut out, and a tube inserted right into my belly.
I will be pouring my nutrients directly into my stomach. The procedure is called Percutaneous endoscopic gastrostomy. You can read about it here.

I am not too happy with this turn of events. I will have this tube for about a month – maybe longer. I was warned that this was a very real possibility, but I was hoping to avoid it. The psychological blow to my family and children, and myself, may be significant. Seeing a TUBE come from my belly is a little freaky, to say the least.
I am hitting up friends and family to buy me a juicer. As a diabetic, I can’t just pour Ensure or Boost into my belly – too much sugar. Since I’m on disability and funds are tight, I’m hoping someone will step up and get it for me. With it I can eat healthy, stabalize my weight, and still maintain proper nutrition.
So anyway – I am about to be come a cyborg. It’s a low-risk procedure. I’ll be out of the hospital the next day. I probably won’t take pictures – not sure I want everyone to see that, ya know.
Wish me luck!
I have suffered my second visible casualty in my war against cancer. Besides my really cool scar, I have now lost all the hair on my chin, and the rest of my facial hair is starting to fall out as well.
Two night ago, as we were lying in bed, Carey looked at my t-shirt and said, “Your whiskers are falling out!” Sure enough, a bunch of my chin hair was on my chest. I jumped out of bed and ran to the bathroom mirror, aghast to see a bald patch on the left side of my chin. As I reached up to touch the bald patch, more hair fell out. I had only to touch them and they came loose in my hand.
So, reluctantly, I pulled out my razor and shaved my chin. For the first time in over a decade, I have no hair on my chin. I did manage to save my soul patch, though. Still, if you look at the picture below you’ll see that even my mustache is thinning and soon I’ll have to shave it off as well.
This is probably not from the chemotherapy. This area gets daily bombardment by radiation. This hair loss is radiation-induced.
I knew this was coming, but it’s still difficult to grasp emotionally. Here, have a look for yourself:
My second round of chemotherapy is tomorrow and I am terrified. I have more drugs now to help me through, but it will still be a very difficult and trying time. This next week will be a bad one for me I’m afraid.
I have completely lost all sense of taste (pun not intended). Eating is no longer pleasurable – in fact things that used to taste good now taste like ashes in my mouth. It has become a chore to make myself eat. Even water has a funny “taste” to it now – almost sickening. I force myself to have 8 glasses a day, but it’s hard.
I had a fungal infection in my mouth last week – a result of having no saliva. It caused me acute and intense pain in my throat for days until the medicine kicked in and got rid of it. I now have a radiation-induced sore on my lip that hurts like hell. My throat still hurts, but my daily regiment, detailed in my last blog post, helps mitigate the pain and morbidity.
It’s no wonder I have begun to seriously drop weight. I now weigh 179 pounds. A month ago I was 194 pounds. And that can be bad – if I lose too much weight my “radiation mask” won’t fit and we’ll have to go back to square one and refit me and replan the treatments.
Strangely enough, I feel more alive now than ever before. I am happy. I am concerned about the future – being out of work is scary, especially when such significant changes are happening at the office and I’m not there to be a part of them and to help the company move forward. So I have some anxiety there.
I am also anxious about how these treatments are affecting my children. They are troopers, but I know it’s hard on them as well. I wish I could spare them this. I fear they have lost some of their innocence as they watch me go through this.
Carey is, as always, my angel. I love her so much. We’re having our first Christmas together and we’re so excited. Without her this would have been near impossible to bear.
So I have my anxieties – but I am also happy. I am very much in the Christmas spirit this year. I am alive, halfway through my treatments, responding well, in love with an amazing woman, and have a wonderful family. What’s not to be happy about?
Yep – you heard me right. I am halfway through my treatments. I have 4 more weeks of radiation and 2 more chemo sessions. By end of January I should be done, healed, and ready to face the world again – the new me emerges. 🙂
So that’s my update. I’m tired (again) – so I’m outta here.
I’ve only been home for a week and a half, but I’m going stir crazy. My daily routine revolves entirely around my treatments and what I must do to minimize the side effects of my radiation and chemo. Here is a sample day for me:
6:30am – Wake
6:31am – Perform “swallowing exercises” to re-moisturize my throat
6:35am – Use Caphosol rinse for 2 minutes (artificial saliva)
6:37am – Shower
6:45am – Use Salt/Baking powder rinse (help break up thick mucus)
6:50am – Try REALLY hard to eat a single bowl of grits or oatmeal.
7:00am – Take medicine to prevent oral infections
7:05am – Brush teeth
7:15am – Leave for radiation
7:50am – Get radiation treatment
8:30am – Head back home
10:00am – Use Caphosol rinse for 2 minutes (artificial saliva)
10:05am – Use SaletBaking powder rinse (help break up thick mucus)
11:00am – Brush teeth (need flouride because of radiation)
11:30am – Perform “swallowing exercises” to re-moisturize my throat
11:45am – Heat up bowl of Chicken and Rice soup.
12:00pm – Try to eat soup.
12:30pm -Use Caphosol rinse for 2 minutes (artificial saliva)
12:35pm – Use Salt/Baking powder rinse (help break up thick mucus)
12:45pm – Brush teeth
1:00pm – Perform “swallowing exercises” to re-moisturize my throat
2:30pm – Caphosol
2:34pm – Salt/Baking powder rinse
3:00pm – Brush teeth
3:30pm – Perform “swallowing exercises” to re-moisturize my throat
5:00pm – Try and eat something soft. Very moist chicken breast is ok. Bisquits, too.
6:00pm – Caphosol
6:05pm – Salt/Baking powder rinse
6:30pm – Brush teeth
7:00pm – Perform “swallowing exercises” to re-moisturize my throat
10:00pm – Caphosol
10:05pm – Salt/Baking powder rinse
10:30pm – Brush teeth
11:00pm – Perform “swallowing exercises” to re-moisturize my throat
11:15pm – Fluoride trays (4x more fluoride than brushing)
11:30pm – Sleep
As you can see, my whole day is punctuated by the routine I’ve had to adopt. Add my constant fatigue and the ever-worsening pain in my throat and you have a pretty much summed up my day.
I am going completely stir crazy as well. I have never had more than 2 weeks off. Not since I was 14-years-old! A large part of my identity is tied into my work, what I do, and my career. To be at home, all day, every day, is a bit of a blow to my identity. I feel . . . incomplete. I question myself. It’s unsettling.
I can’t even go out and enjoy myself. My white blood count is low and I am at high risk of infection. I need to protect myself and stay away from people. I need to stay inside. Because of my new routine, I haven’t really figured out what to “do” with my days yet. ugh.
So – on a more humorous note; every day when I get my radiation treatment I have company. As I lay on the table, strapped down, all I can do is stare at the ceiling above me. The ceiling is tiled like any other office building, meaning that the ceiling tiles look like this:

I have to stare at this ceiling every day for half an hour. My mind begins to find patterns in the dots. For some damned reason I see hundreds of cats. I don’t know why. I just do.
There is one cat, the biggest of them all, that stares at me every day. It’s a cat with a human body. He stares down at me as I get my radiation every day. I drew a picture of him – here is what he looks like:
Ceiling Cat is watching me get Radiation. heh. On that note, I have nothing left to say.
Every day, I have radiation treatments. As these treatments have progressed I have found it more and more difficult to actually taste anything. The other day, I finally reached the point of tastlessness. Nothing I eat or drink has a taste any more.
I suppose that can be a good thing. My youngest son told me that it’s a perfect time to start eating healthy because I can’t taste how bad the “good food” tastes. I suppose he’s right. heh.
The only issue is that the morbidity, or negative side effects of radiation, are getting worse. Not only can I not taste anything – I can barely swallow. Swallowing a pill almost does me in. Every swallow is a lesson in pain. My throat is so irritated that even breathing is a chore as the air moves across my traumatized flesh.
I’ve reached that point where the pain in my throat is as bad, if not worse, than the pain I experienced after the tonsillectomy. Don’t even ask me how painful a sneeze is. And I’m only halfway done with my treatments. ugh.
Because of the pain and disruption to my life from radiation, and the agony of my upcoming chemotherapy treatments, I have decided to take short term disability. I don’t like taking the 40% cut in paywhile on disability, but I really wasn’t helping my team as much as I would have liked. My team needs me to be a consistent and reliable resource – which I can’t be while I am enduring these treatments.
Still – now I have to find ways to keep myself occupied. My general fatigue, along with my pain from radiation, make it difficult to do anything physical. So I imagine I’ll do some writing and reading while on disability – as much as possible.
If you have any good reading suggestions, send em my way!

I never knew.
I’ve always thought of myself as “strong,” “tough,” or “able to withstand adversity.” When I was younger I was a brawler. I would start fights, finish fights, win fights, lose fights. I would break bones – mine and others – and laugh at the blood flowing from my mouth. I’ve felt the sting of a blade against my skin and the blunt force trauma of a wooden stave to the ribs.
Two months ago I went under the knife for a radical neck dissection and now have a 10-inch scar on my neck. I had my tonsils removed at the same time. I couldn’t walk, talk, eat, or sleep following that surgery. And yet I smiled and bore the discomfort like the strong man I knew I was.
I have met my match – my personal demon, my bane; the thing which brought me to my knees and for the first time in my life made me question if I could go on. Made me wonder if I could endure and was it even worth it.
Chemotherapy.
I went in last week positive that this, too, would be an indignity to be suffered but one from which I could, and would, emerge the victor. I sat down in my chemo chair blithely, chatting with the nurses and other patients – joking even. I was young. Strong. I was the man they all wished they could be – my strength would provide comfort to my fellow cancer patients. I was in control.
And I emerged, six hours later, confident that I had handled this as only I, a strong man, could.
Until the next day. The nausea started as soon as I woke up. It didn’t relent for six days. 24 hours a day the pain and nausea was my constant companion. The drugs I had been given stopped me from vomiting (much) but the nausea was with me. Even in my sleep.
I couldn’t escape. Not one second went by when I did not wish for relief. I didn’t cry out in pain – no, I’m not the kind of guy to wallow and weep, but the pain of my nausea became my entire universe. From one second to the next I was comparing the flavor, intensity, location, and effects of my nausea. In my sleep I dreamed of being sick on a boat, choking on a tiny morsel of food.
I couldn’t eat. The only food that I could keep down at all was plain white rice. I managed half a bowl a day. I didn’t drink – I became dehydrated – and that made my nausea even worse. I couldn’t get comfortable. One second I would be sitting in a recliner, the next I had to lie down. A moment later I would sit on the edge of the bed, hunched over, rocking slowly in front of my ever-present puke bucket.
Only I had nothing to puke. I was empty. All I had was a constantly-increasing supply of stomach acid – which served only to exacerbate my nausea and to irritate my radiation-irritated throat and mouth.
Then came the diarrhea. Painful. Explosive. So intense that it caused me to have dry heaves. I would lean over the tub while I was sitting on the toilet just to cover my bases. It worked – mostly. Don’t ask.
If it were just a physical toll I think I could have handled it. Maybe. What I didn’t expect was the mental and emotional toll this would take on me.
Without food and water for a week, sick near to death, something happens to you. Something changes inside. Maybe it’s hormonal. Maybe it’s natural. Whatever the cause, I began to seriously despair.
Yes, I chose that word correctly. Despair. A state in which all hope is lost. My future was gone. My past, non-existent. I had now. This moment. Nothing else. And that moment was filled with nothing but pain, misery, and a hopeless wish that the pain would go away.
I could barely have a conversation with anyone – although I tried for the sake of Carey and the kids. I found it had to look at anything for more than a second. Nothing could hold my attention as I focused almost exclusively inwardly.
And finally – the fatigue. I lost 8lbs in a little under 6 days. That’s a lot of weight and it doesn’t come off without a terrible price. I couldn’t walk across the room without wheezing as much from pain as from general weakness. The thought of getting into the shower caused me anxiety at the effort it would take. Anticipating a conversation that I knew would happen caused me to cringe in dismay.
For the first time in my life I asked myself, “Can I go on?” Should I? Was it worth it? My answer was, always, a gritting of my teeth and a “YES I CAN, YES I SHOULD, YES IT IS.” I was always determined – but I never, ever, anticipated that my emotional state would be reduced to the point where I would even ASK myself that question.
But ask it I did. I faced my demon – the one who beat me so badly that I had to reach deeper inside myself, deeper than I ever had before, to find a new wellspring of strength and perseverance.
The good news is that I learned a lot about myself. Even at my darkest, my most hopeless, I am not truly a pessimist. I can, and will, surmount and survive. I didn’t understand that this battle would test me to the limits of my endurance and beyond.
I was naive. I also learned that I have much deeper reserves than even I expected. I reached deep – and found there was more to me.
My partner, my love, the light in my darkest hour through all of this has been Carey. Her quiet support and acceptance of my condition, her constant attention and touch, her strength (which I suspect is far greater than mine) has been simply amazing. She effortlessly nurses me, manages the family, and takes care of our days-to-day. She selflessly gives of herself day in and day out. I honestly don’t know how I would have fared without her.
I learned today that my experience with chemo is atypical. All patients call or go back in for IV liquids and anti-nausea medication the week after chemo. I didn’t. I was told to expect nausea. I was told to expect to be sick. I just accepted it and waited it out. I shouldn’t have.
I was told I am on the MOST toxic of all chemo drugs – it’s a mustard gas derivative – and that I should have called when my symptoms got bad. They did tell me that before chemo, but I figured they would proactively schedule me for an appointment if they knew it was going to happen. Why wait for me to get sick first, right?
Anyway – I survived. I have some kidney pain still. Some muscle cramps from dry heaving. I am so weak a feather could knock me over. But I’m back to work – recovering.
I have two more chemo treatments scheduled. I won’t lie. I’m terrified of them now – but I do know that I have it in me to prevail.