A Road Less Travled

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In the midst of all of this story telling, I forgot to mention one key thing. The fact that my brother, Josh, (now 24) he was one of the first to hear about my diagnosis shortly after it happened. And after hearing that I’d been diagnosed. He packed up his things, and moved from California, back home to Idaho, so he could help out, weather it was taking care of the dogs when mom and dad were in the hospital with me, or even staying in the hospital with me for a week of treatment. Sure he helped out around the house, but he helped me mostly. Keeping me in good spirits and making me laugh with the things he did. I can’t thank him enough, I truly can’t. He is a big reason I am the person I am today. He is a great role model, as I will always look up to him, no matter how much taller I am. (Haha) So Josh. Thank you, for all that you’ve done. I know we don’t get to talk much anymore, and that’s a shame, but thank you. For being the awesome brother you are..

Back to the story.

I don’t remember much about my first day of treatment. I felt pretty good for being my first week in the hospital. But that changed, with the chemotherapy drug combo ‘doxorubicin and cisplatin’ those two bags of pure evil, turned my insides worse than mom’s cooking. (Kidding) but still. It made me feel terribly sick. Just laying in bed, then a second later, holding the pink bucket. For those of you who don’t know what the pink bucket it, it is just a large pink, plastic, bowl that hospitals have EVERYWHERE, for reasons as such as. Sudden vomiting. Which is something I was quite familiar with. Yes, laying in bed watching TV, feeling pretty bad. Then throwing up for no reason. I had practically had that bucket in a holster..

The reason I don’t remember a lot about my first few weeks of treatment, is simply because I slept through it. No joke. I would sleep for hours and hours, every day. Why? Because when I was asleep, I didn’t feel hungry, or sick, or tired. I was just sleeping. The only time I’d wake up, was to use the bathroom, or more accurately, a little plastic bottle with a handle on it. Also known in a hospital, as a uranyl. Think about it, being pumped full of fluids, and being forced to drink, almost non stop. I pee’d about every 5 minutes. So imagine. You’ve just emptied your bladder. And drink nothing for the next hour. You’re still going to pee, 5 or more times. It got old, pretty quick. Especially while sleeping. Though it was better, I could hold it comfortably for about 20 minutes. Then I’d have to go again. Thankfully, I had a uranyl by my bed. Nothing better than standing up at the side of your bed, peeing, and going back to bed. And when I woke up, it would be empty. Oh the joy of being in a hospital, and having nurses tend to your every need..

That is another thing I’ve taken for granted. Though my first week of chemo was down right horrible. It just got better and better, due to the nurses and doctors I had. Well, most of them. The ones that actually did their job. And did it very well. Yeah, you know who you are. I am forever in debt to those of you who took care of me, by giving me the medicine I needed, on schedule, and tending to everything I needed or wanted. Thank you, each and every one of you. Without the great help and care you gave me, I might not be here writing this right now..

Sticking to the title of this post, I will explain. You remember how I said the base started construction on the new main gate? Well, we were forced to use the back gate, also known as the ‘commercial’ gate, for delivery trucks, vans, and semi’s. This meant we had to drive an extra 5 miles just to get to the back gate, and an extra 10 minutes to get on the road we usually drive, to head to Boise. Or, we could turn left at the gate, and take Simplot road. Let me inform you, Simplot road drives right by the Simplot dairy/cattle farm..

Cows.. Hundreds of cows. And you know what that means? Yes, manure. The sweet smell of cow poop, and a lot of it. Not to mention, Simplot road was a farming road, it had more curves on it, than a Kardashian. It went up, down, swerved left and right, then left and right again, then up and down again. What a fun ride it was. While I was trying not to puke in the back seat of the van, drinking my magic shake, and trying not to lose the breakfast corn dog I had eaten, and regretted. I’ll explain the ‘Magic shake’ next time.

Needless to say, we used Simplot road 4 times, I threw up all 4 times. We didn’t use it anymore. Though it did cut down the driving time, it also cut down the enjoyment of my breakfast. Something else I remember greatly about my stays in the hospital. The amount of food I consumed. I would probably eat my body weight (then 80 or so pounds) in a week. And other weeks, I would barely eat anything at all.

After my first few weeks of being in the hospital. I became more immune to the drugs they gave me, and got my appetite back. During one course of chemotherapy (Methotrexate) they injected me with a steroid called Decadron. And maybe 10 minutes went by, before the first ‘I’m hungry’ happened. I would order from the menu the hospital provides. Or if I was lucky enough, mom and dad would go down to the cafeteria and bring back fresh food. Like a great big cheeseburger, with fresh deep fried onion rings. Or an amazing spinach salad. I remember, chicken alfredo, a side of white rice with soy sauce, for lunch. For breakfast, I had two scrambled eggs, with sausage and bacon, a muffin, and a glass of orange juice. And then for dinner, I’d have something to eat at about midnight, because chemo throws your minds clock out the window. And I’d usually eat a microwaveable meal that we brought from home. After that, I’d still be hungry, at around 2 AM I would have to order from the hospitals ‘cold menu’ meaning nothing cooked. So sandwich it was! And a pretty great one at that! White bread, turkey, Swiss, mayo, lettuce, tomato, and pickles. I always ordered more pickles. I think it was the salt, but I was like a pregnant lady, I had like, 20 pickles on my sandwich. It was great.. Man, now I’m all hungry.

I had the weirdest cravings. Like one day, on our way to the hospital, I wanted McDonalds. So we drove through, just for a bite to eat, right? No. I had a Big Mac, two cheeseburgers, a snack wrap, frys and a drink, all before 9AM on admission day. Yeah.. I know..

Yes, my stays at the hospital were something else indeed.

More to come soon! Thanks for reading!

“Because all great oak trees, start out, as just a couple of nuts”

Ty

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The First Day

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So after calming down in my hospital room after surgery. All hooked up to pumps and tubes attached to needles, needles attached to my chest. Over all, a great way to wake up..

It all started to sink in, I finally realized this was reality, and this demon inside me wasn’t going to give up easily, and nether was I. So after becoming conscious enough to sit up in my bed. The machine started to beep. (I don’t think it was right at that second, but I’m going off of pure memory here, cut me a break. Haha) So the pump is beeping, and the thing they tell you to do when the machine beeps. Is to call a nurse in. Well, we did. She comes in and presses some buttons, does some things, and the beeping still won’t stop. Finally I look at the screen on the pump, (something she didn’t do) And it says “Pump blockage” So my mom says. “Is this normal? For it to say this?” The nurse realizes and says “Oh.. No, it’s not.” She checks all the tubes and such, and see’s nothing that resembles a ‘blockage’ So she finally says. “We need to check the port” and sure enough, that was the problem. Apparently, My blood had clotted in the port to quickly, causing the blockage, and causing fluid not to flow. So she leaves, and comes back with a ‘push’ and for those of you who don’t know medical terminology. Or my terminology. A push is a syringe of fluid. And supposedly, this was a supper duper blood thinner, and it would clear the clot. Well, it didn’t, or maybe it did, maybe it wasn’t quick enough. I don’t remember..

So she (the nurse) says. “we’re going to have to change the port needles..” I gave her my half-drugged version of the “Yeah.. Right” look. But sure enough. I had no choice. And let her remove all the bandages and gauze, while I’m still coming off anesthesia. So I was more than happy to work with her. (Sarcasm) So after she clears all the wrappings and dressings off, she puts her hand on my chest, grabs the needle, and pulls..

Now, I’ve never hit anyone. Ever. But at that moment, I reaaaallly wanted to. She pulled the needle out, and I about came off the bed. The pain, I still haven’t felt something that terrible to this day. And that was just one. I had a double port, so two needles could be in me at once. So I could receive chemo, and hydration all at once. Smart, I’ll admit. But that day. Not so smart..

So same thing happened, she pulled, I yelled. And it was done. (Didn’t mean for that to sound so bad. Hahahaha, sorry Mom.) ANYWAYS. After that happened. I needed to be ‘re-accessed’ meaning she had to put two more needles back in the port. If I could have walked. I would have been half way to the elevators by then. But me being drugged, and in tears, just wanted to get better. So I (with approval from my mom) agreed. She leaves to go get needles. And comes back a little to quickly..

As she unwraps the needles. Mom happened to look at the packaging, and it said “1 inch port access needle” or something to that extent. And Mom says. “Woah now. This is to big, the girl in the OR said a quarter inch needle.” And the nurse said “No, this is what we use on toddlers, it will work” I weighed 95 pounds. A toddler is much smaller and covered in fatty rolls. I had nothing between my skin and my port. You could actually see the screws holding the port together, through my skin. That’s how thin I was. But anyways. She, sure enough, pushed them in the port anyways, (it was our first stay in the hospital, we didn’t know any better) When accessing a port, you stretch the skin with two fingers, and push the needle through the skin, into the ‘bubble’ of the port, until you hit the metal back of the port. Well she didn’t get the memo, and kept pushing, thinking the needle would go further. Well, it didn’t and mom finally said enough. The needle they used on toddlers, apparently shrunk, or maybe she was wrong for a change. Because that needle stuck out of the port, and off of my chest, about three, fourths of an Inch.. Yeah, she was wrong.

So, a complaint was filed. And she wasn’t seen again. Haha. The new nurse came in, pulled the needle a different way, and I didn’t feel a thing. Already I liked her. Then, she injected a small amount of numbing agent in my skin. She grabbed the right size needle this time. And pushed it in, also didn’t feel anything. Grabbed a push and flushed the port, it worked. I was unblocked, and accessed correctly. After wrapping up the needles so they won’t move. She left, and we could breathe again..

I started my first chemotherapy treatment at 4:25 AM. And finished 4 hours later. Oh how the fun was just beginning..

Thanks for reading! I promised I wouldn’t stay up to late! Sorry again, Mom!

“Some people, aren’t smart at all.”

Ty

The Story Continues

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In this addition, I will continue where I left off.

Where was I? Oh yes. I thought that being bald was the worst part of the diagnosis. So simple. Something I’d seen on my father my entire life, was going to effect me. Yes, being bald.

After several minutes passed. My mom finally came in side, with both dogs waiting there to greet her at the door. She asked me again if I was alright, and again, I nodded. I didn’t say anything because it felt like I couldn’t. After hearing the words “Cancer” in the same line as “Ty’s X-ray results” my gag reflex was at my teeth. If I tried to talk, I just knew I would throw up.

My mom sat at the computer, and proceeded to save my life. What I mean by that is, she sat down, and for 4 hours straight. She researched everything from “What to do after being diagnosed with cancer” to treatment options, and possible cures. My dad walked in the door, and sat down with my mom. And together they did better research than most government agencies. They found possible cures and best treatment options for kids with bone cancer.

The clock moved slowly for me laying there. Not sure what to do, or what to say. Before I knew it, it was 4 o’clock, and that meant it was time. For my first ever MRI. For those of you who don’t know what an MRI is, allow me to explain. It is a medical scanner. And I don’t mean faxes or copies. MRI stands for magnetic resonance imaging. Meaning the big tubular scanner you lay in, has very big, very powerful, very.. loud magnets within the plastic case. And as you lay in the tube. With ear plugs. The machine begins to virtually cut your body in to paper thin, digital images. It takes over 400 images, and layers them all together, and sends it to the commanding computer, to which. Is a final, 3D full body image. Or 400+ 2D images. Yes, it is quite amazing when you think about it. And all this, in a semi trailer.

We drove the long (2 minute) drive to the base hospital. And pulled up to the “MRIPST” or the Magnetic Resonance Imaging Portable Scanning Trailer. This thing was the size of a full length semi trailer. With wheels and all. Amazing. We pull up, and me, in my sweats and jacket, with a bottle of water in hand. Walk to the machine. The MRI manager lady greets us at the door. We (me and my mom) walk in to the smallish room, with 5 computer screens and a small coffee maker. She sat down and asked me and my mom questions that I really can’t remember right now. But after all the talking. She said “Are ya ready?” And I replied with “As I’ll ever be.” She opened the lead-lined door, and there it was. The big loud beast, I’ve come to know as nothing more than a warm blanket, headphones, and a 45 minute nap. I laid upon the cold, plastic, sad excuse for a bed. She asked what my favorite radio station was. Me, not knowing, turned to my mom, cause if you don’t know this. Mom’s know everything. As she got the comfy, noise canceling headphones, and put them on my ears. I heard the ending of a song, I had heard before. But never really knew who sang it. She (the MRI lady) brought me two warmed blankets. Which, in a hospital setting, are the greatest thing. Period. She said we would start in a moment..

So there I was, Laying in the MRI tube. With my head just barely out of the tube. Headphones playing “Matt Carney – Closer to love” on the Christian radio station of Air1 (We listened to Air1 a lot when I was going through treatment. Mom and Dad listened all the time, I think as a way to stay positive, but hearing those songs while driving to the hospital, if I felt sick, every time I heard that song again, I’d feel sick, or if I was depressed when I first heard a song, When I heard it again, I would feel depressed yet again. One of the main reasons I don’t like the radio station anymore.. Sorry Mom.) I closed my eyes and listened to the music. As the MRI tech buzzed in, and said “We’re going to start, are you okay?” I said “Yup.” Of course I wanted to say. “No, I’m not okay, get me the hell out of this tube, It’s hot in here. I’m thirsty. Where is MY bed. I want to go home.” But there is a time and place for everything..

As the loud clanking of the machine started to reverberate through the room. I listened to the radio broadcaster take calls on the topic of. “Do you call it Coke? Soda? Or Pop?” Of course the right answer is soda. But these people went on about how “Pop this” And “Coke that.” After the short debate, a song came on the radio, that I’d heard before, and is still, to the date. One of my favorite songs. That would be “Newsboys – Something Beautiful” The words of the song when it started, described what I was feeling that day. With a catchy beat, I listened, and was amazed. Had this song been written for me? I have a feeling that it played for a reason. Just at the right time..

After the scan had finished. And I could go home. I went to my room, appetite non existent. And laid down on my bed. Wanting to wake up from this horrible dream. But I knew that wasn’t going to happen..

After the scan, we were given names, and locations. Of doctors, and the address of the hospital where I would spend most of the coming future. St. Luke’s Regional Medical Center, Boise Idaho. At MSTI Pediatrics. (MSTI [Pronounced Misty] – Mountain State Tumor Institute) My first appointment was scheduled. And all I had to do was show up.

So the day of the appointment, I woke up, showered, and threw a breakfast ‘pancake and sausage’ corn dog in the microwave. Why? Because it seemed like a good idea. Grabbed my microwaved food. And out the door we went. Of course it wasn’t just that simple. You see, at this time of year (October) The base decided that it was a good idea to start construction of the new, main gate. So every time we left for the hour long drive to Boise. We had to go out the back gate. More bumpy roads, and swerves in the road. Which, on a stomach with nothing but a microwaved corn dog and some water in it. Didn’t sit well. And, as you’d imagine. I threw up. The best part about that, was it tasted the same coming up, as it did going down. (Great mental image)

Yes, we arrived in Boise, at MSTI. Just a little bit lighter than we came. (nudge nudge) We walk into the waiting room. Filled with 12 other family’s, with their screaming kids. Cause who likes to have an IV started at 9 AM? Finally when we got a room of our own. The doctor came in. The great Dr. Chang. My personal oncologist. Came in with a lot of paperwork. All of which, I do not remember. Then one of the nurses came in, with a doll. Dubbed the “Port doll” it was an easy way to explain to kids and parents alike. That the first surgery I would have, they were going to attach a docking station in my chest. No, not for your iPod. For port needles. The lovely nurse explained it so fast, it was but a blur to me. Mom and Dad knew what it was, and said yes, before I knew what it was. All I knew, was no more sausage and pancakes in the morning..

Once that was over with, two days went by, and I was in Pre-Op. Awaiting the surgery for my port-a-cath to be attached in my chest. I took the small shot of Pre surgery meds (Also known as the
makes everyone looks funny drug) the walls started to move. And I started to doze off. I faintly remember being rolled to the OR. And getting transferred to the Operation Table. The mask was put on me, and the nurse said “Count back from 5 to 0” I said “Alright! 5..” And I woke up almost 4 hours later. Keep in mind, the port placement surgery is usually only 35 minutes long. But me being my problematic self, had something happen..

You see, usually, they make a small incision on (patient 1’s) chest, press the port on the pectoral muscle, stitch the port to the pectoral muscle, feed a tube through an artery in my chest, and attach said tube to the port, and hold it together with a zip tie or something. But noooooo. The second they put the clip on to hold the tube to the port, it broke, and the tube said “Bye Bye!” As it was sucked into my blood stream. A two foot long tube, flowing in my blood, if it would have made its way to my heart, it would have coiled in the chambers of my heart, and stopped it from beating. So they (the surgical team) rolled me out of OR, and rushed me to the nearest X-ray room. They took an X-ray of my chest, to see where the tube had ran away to. They find the tube somewhere in my lower chest cavity. So rather than cut me open, and pull it out, they go for the more.. Mad scientist approach. They take an even longer tube, with a claw on the end of it, and press it into my carotid artery. (Accessed through my right thigh/groin area) They fish around trying to find it, finally they find it, grab it, and pull it out. Patch up the small hole on my thigh. And go back to the main surgery. But this time. They think smart, and put it together before putting it inside me, they yank on the tube, making sure the clip stayed clipped. They remove the attached port, attach the new port, a little lower, feed the tube, and attach the clip. This time. It does its job. I remember waking up, seeing lights pass by, as we’re rolling down the hall way, on the 4th floor of St. Luke’s. and being backed into my parking spot in my room. Family waiting for me, as I look in the room. I see that it’s snowing and pitch black outside. I thought “It was light when I went under the knife, something isn’t right..” I came too, with two needles wrapped in gauze and padding, which really I think is to just hide it from view, which doesn’t work, because I know there are still needles in my chest. And a 12 pound weighted bag on my groin. Happy Monday to me!

Continuation Soon. Thanks for reading!

“If you love somebody, better tell them while they’re here, cause they just might leave before you get the chance”

Ty

The First of Many

Tonight, I start the first of (hopefully) many more posts to come. So let’s start with a little introduction.

Hello, My name is Ty Ulmer. I’m 17 years young. I have an amazing family. With my mother Kim and my father Darrin. And the greatest brother anyone could ever ask for, Josh. We are the Ulmers.
And We (well, most of us) live in the great state of Idaho.
Those of you whom have never been. I strongly suggest you give it a visit. When I first moved here, way back in 2006. I wasn’t sure what to expect. But that changed quickly..

You see, I’m what you would call, different. I’m not quite your average teenager. As you’ll come to see. When we first moved here, I was 11, but moving here a month before my birthday, I quickly grew to the age of 12. And what a great age it was. Not a care in the world. Waking up, eating breakfast, and starting school, all in the same house. You see, growing up as a military brat, I was.. Spoiled when it came to schooling. I never had to get up at the crack of dawn. I never had to ride the buss with 20 other kids, all half asleep. I never had 7-8 hours of school. I my daily study’s. Sure, I had math, science, history, all the usual subjects anyone else had. But I didn’t sit in front of my teacher. I didn’t learn at the pace the teacher decided to teach. I learned at the pace I was used to, my own. I had all of those subjects to do, sure. But if I wanted. I could skip lunch, and be done with school in 4 hours. It was all up to me. There were days that I got up early, and finished before lunch. Then there were days that I was lazy, and finished shortly before going to bed. Of course I had more days finishing after dinner, than before lunch. But you get my point. Yes, growing up in the Ulmer household. I had quite the life, as I still do.

I would finish school, and wait till the buss stopped by our house, to wait for my friends to come home. So I could show them the new nerf gun that my parents bought me for my birthday. And we could go out and play. Yes, life was good. On a military base, safety wasn’t much of a concern, you had to ride your bike with a helmet, and had to be home before the street lights came on, but that was it. Me and my friends would go off and play at the park, not even a minute from my house. Perfect for mom, she’d walk out the front door, yell “Dinner’s ready!” and I’d be home in no time. Just to go back out and play after my food had settled for 30 minutes, and not a second before.

I’d go to bed that night, after saying my goodnight prayer with my mom. Feeling safe and secure in my bed. Just to wake up the next day, and do it all over again. I’d finish my school and go for a bike ride almost every day. No, not for exercise, just because I liked to get going really fast, hit the breaks, and try to make the longest skid mark on the concrete. I would compete with my friends on who had more style, and who did it better. If we weren’t making a mess of the concrete, we were riding around the outskirts of the base, looking for dogs who’d ran away. Just to take them home, and call the number on the tag, so the owners could come pick them up. They always wanted to pay me for returning their dog. They’d ask “How much do I owe you?” I reply with “What ever you feel comfortable giving me” I never asked for the money, because back then, I never did anything for money, I did it because I knew if my dog ran away, I would want someone to return him to me. And because it gave me something to do everyday.

Day’s would go by, and before you know it. It was my birthday again. What did I get this time? A cell phone. Just so my mom could call me when she wanted me home. Most times I would never hear the ringer, and she would have to come find me anyways. Can’t say much has changed. Haha.

Shortly (I mean a month) after my birthday, which still happens every year, on August 2nd. It was a sad day for everyone who kept up on news. It was September 11th. And everyone now knows what that day means. For us being in the military, it meant all the more. I’d go out and ride my bike with my friends, just as I had the day before. But when they had to go to the store with their mom, I continued making skid marks, and doing the things I normally would.

I circled the neighborhood, gathering speed with every pedal. I was going for the biggest one yet. My hands made the mistake of hitting my front tire break, when my brain clearly said rear. And I flopped forward over the handle bars, my feet slipped off the pedals, and the pedals caught on my shin. Tearing the skin on my right shin. Feeling like an idiot. I got off my bike, and limped home. Cleaned up the cut on my leg, just before mom got home from work. We had dinner, and went to bed as usual. Over the next few days. I noticed the pain never really went away, as with other cuts. But being 13. I thought nothing of it. At night I would ask mom for the occasional ibuprofen because my leg was sore. After about the 3rd day of asking, mom realized something wasn’t right. And looked at my leg.

Mom: “Growing pains.” Dad “That, or shin splints.”

After a while, I began to limp. And not like your average ‘pants on the ground’ limp. Like an ‘Ow, my leg hurts’ limp. I remember my mom putting the back of her hand on my leg and saying “It’s really warm.” And feeling the bump that had risen from my shin. She knew something wasn’t right. And made a doctors appointment. Being on a military base. We had to deal with deployments. And yes, doctors included. So we had to wait. Almost another month, or so it seemed. When the day finally came, we showed up to the appointment not knowing what to expect. We bumped into one of our friends who was a nurse there, on our way to our exam room. We get to the room. And it felt like we (me and mom) were being watched. Or I felt like I was. The doctor comes in, and looks at the bump (now doubled in size) Feeling it, and so on, as doctors do. And he said “Let’s get him in for an x-ray”
He leaves, and we wait for the x-ray tech to come get us. They lead me back to the room. I remember feeling really cold. Could be the fact that most hospital A/C units are set on a strict 45 degree temperature year round. Or something just didn’t feel right.

X-ray finished, and now waiting. Waiting. And more waiting. Just as all hospitals do to their patients. We go back to the doctors office. As he is looking at the x-ray, he asks us. “Could you come back at 4 for an MRI.” I remember my mom asking. “Well, do you know what it is yet?” and the doctor looked at us both and said. “It looks like bone cancer.”

I’ve never jumped out of a plane, but I’m pretty sure the feeling I felt after he said that. Was pretty close. It’s as if you jumped out of the plane and realized. “I forgot my parachute” The clock on the wall, stopped ticking. My hands, started to sweat. My mom looked like she was just punched in the gut. Loosing all air in her lungs. And brought to tears. The feeling when she grabbed my hand, and squeezed it tight. I will never forget. As we quickly walked back to the van, and sat down. Still in disbelief. My mom holding back the tears, asked me “Are you okay??” I nodded. But never spoke a word. The quick drive home was silent to say the least. I don’t even remember hearing the engine running. We pull up to the house. My mom still gasping for air. Told me. “Go inside sweetie, I’ll be right there” as I walked to the house, stumbling in the door. I laid on the couch. And didn’t move for what felt like hours. I could picture my mom out in the car, calling my dad, crying, and saying “Come home now.” And I pictured my dad, Standing up from the meeting. And saying “I have to go.” and walking out. The first real thought I remember having was. “I’m going to loose my hair?!?” “Oh no. I’m going to be bald!!?” As if it was so important.

I blinked my eyes. And here I am, at 2:03 AM.. 4 years from diagnosis. And 3.5 years cancer free.
As I write, I try to make it as if I were talking to you, and explaining what was happening. You’ll see a lot of that in the coming posts. But as the time passes. My bed gets more and more comfortable. And now I must give in.

More to come. Hope you all enjoy it!

“The things we deem important in our lives, shouldn’t be things, if they’re really important.”

Ty