Tuesday, May 31, 2016

The Adventure

It was 6:45am. People swarmed the hospital like ants with several long, fairly organized lines at the check-in desks along with a few solitary members meandering in what appeared to be aimless exploration. As with the ants, it probably wasn’t.
My anxiety hopped around the upper atmosphere as I sat in the waiting room with Rachel and our good friend Jeff. We all had dinner the night before, the Last Supper I had called it because I wasn’t going to be eating like this again anytime soon. Jeff graciously offered to pick us up at the hotel and take us to the hospital the following morning.
Fifteen minutes later and Rachel and I were headed back to the prep room. This is where you exchange your clothes for those sexy hospital gowns that everyone should have hanging in their closets. The nurse took my vitals and I was offered my last chance to use the restroom. Yeah, I took it.
With the “rooms” separated by only a curtain, privacy is not common in such situations, so we heard everything the guy next to us said. He was positive, but nervous. He talked the nurse’s ear off and she took it in stride, offering humor and a friendly demeanor to the conversation. Unfortunately, the man was alone.
A little while later I was taken to the pre-surgery room. Again, “rooms” separated by curtains. The difference this time was there was a bed I was to get in. Once in the bed, they covered my body with an air-blanket that had hot air circulating through it. It was warm, and it was pretty cool.
The nurse took my vitals, inserted the best IV I have ever had inserted, and chatted with Rachel and I for a bit, giving us the plan on who would be coming by to see me and whatnot. Then the anesthesiologist stopped by. A lovely woman who, with her partner and two kids, had recently moved to Seattle from Tucson. Obviously, she and Rachel had the Tucson connection, but she also had family in Port Angeles. So she knew our area, as well. That was a nice connection to get before I went under.
It was close to 8:30am when Dr. Kim stopped by. He had a resident doctor with him, one that would be joining him during the operation. He marked my right neck so they would know what to cut open. That’s good, don’t want any mistakes there.
I heard Rachel tell the anesthesiologist something about how our oldest son needs everything in a certain way and it’s important for his well-being that it is in this certain way. Dr. Kim looked at me and said, “That’s how I am in the operating room.” First thing through my mind was Oh, thank you, thank you, thank you!
After a few more lighter moments I looked up at Dr. Kim and said, “I’m nervous.”
He said, “You should be.”
There’s a lot I like about Dr. Kim, but I really like his honesty and straightforward discussions. He was telling me it’s ok to be nervous, this is surgery, and surgery is nothing to be taken lightly. I appreciated his comment. It helped ease my anxiety.
Then the anesthesiologist leaned over me so she could inject something in my IV. She said, “Here’s a little something to help you relax.”
Help me relax? Whatever! That shit knocked me out. I don’t remember anything after she did that. No memory of saying goodbye to Rachel. No memory of traveling to the OR. Nothing.
For that, I am extremely thankful.

*******
I awoke in a panic.

I heard someone say it was 1:15 or something like that and through the fogginess of the anesthesia I was coherent enough to realize my three hour surgery was over. In my head, I had just gone to sleep, I didn’t even see the OR so there was no way three and half hours just passed.
My mouth felt weird, and when I breathed through my nose, some fluid or something stopped me. I couldn’t get a decent breath. I panicked, thinking I was going to stop breathing. I heard some discussion about a catheter and thought, Hey, this wasn’t in the brochure. No one said anything about a fucking catheter! And I never thought I'd hear the words “catheter” and “convenience” in the same sentence, but there it was, said like it was no big deal. My stomached jumped.
Then I started to move. Yeah, I was probably moving at a snail’s pace, but to me we were hauling. We were moving so fast I thought I might puke. God, that feeling was horrible. I don’t remember hallways or elevators or anything but that awful my-stomach-wants-to-see-the-floor feeling when all of a sudden this person, a lady, an older lady, said, “Hello, my name is Chris.”
Then she held my hand.
And that, ladies and gentlemen, helped me find relaxation.
She said she was my nurse, that surgery was over, and I was in my private hospital room.
It was about 1:30 that afternoon.
Chris said she was on duty until 3:30pm. Unfortunately, my memory of those two hours is shaky, at best, and I don’t recall getting to talk with her again. But I don’t need to. Those few minutes I do remember of her kindness, in both body language and words, made all the difference. She helped me when I so desperately needed help. For that, I am extremely grateful.

Rachel was with me. My senses and coherency were slowly returning to semi-normal. Apparently, Rachel took a picture of my scar and texted it to Jeff. After a while, he joined us in the room. I still had not seen my new beauty mark.
The three of us talked and laughed. Yeah, I had to slow the laughter down at times, but they did keep my spirits up, and I was talking.
I couldn’t sleep, though. I would lay back and relax, but then I'd get that feeling I had earlier that I was going to stop breathing. This really only happened when I breathed through my nose. When I breathed through my mouth, I would eventually choke. Yeah, great options.
So I got to my room at 1:30pm or so and didn’t sleep more than, literally, one minute straight until 5:15 the next morning. And at that time I managed to get fifteen minutes of straight sleep. All night I thought I was going to stop breathing. I was scared this might be a new “feature” after this particular type of surgery and I didn’t think I would be able to handle it. Thinking you are going to stop getting air into your lungs will scare the shit out of you.
When Dr. Kim came by the next morning before 7:00am I asked him about it.
It was phlegm. It happens. It goes away. In fact, there might really be phlegm or there might not be, just the sensation. Man did I ever hate this sensation. I still get a little bit now, but at least I don’t feel like I'm going to stop breathing.

So for the next three days this was my view:


Well, I couldn’t really turn my head very easily and look out the window that was on my left. I had to turn my whole upper body. I’m still careful about it today, probably over-careful, but hey, it’s my neck. Yes, it’s getting easier.

Rachel and Jeff went to dinner on Thursday night while I managed to swallow water and chicken broth. Yeah! On the first day! Yay me! I made the comment to Rachel and Jeff that “He said I could go home when I can swallow water. He really should have said I can go home after I can swallow water without being on morphine.” They agreed.
That night, the night I couldn’t sleep, I had a terrific nurse. Her name was Kristin. I'd only get to spend twelve hours under her care but she was awesome. She was kind, caring, and helpful. When she told me she loved math and science, I told her she was not allowed to leave at 7:30 in the morning. Unfortunately, she had to. But before she left she came in to take out this catheter that, I have to admit, had become a convenience.
“Is this going to hurt?” I asked.
“I don’t think so, but you’ll feel a little pressure.”
Um. Ok.
When she was ready she said, “On the count of three take a deep breath. One. Two. Three.”
Holy shit! What was that?
I wouldn’t say that it was painful, but it certainly was not a comfortable experience. Luckily, the weird sensation only lasted a few minutes.

After the catheter was removed I finally had to get up to use the restroom. I stopped at the sink to wipe my face off with a wet rag. That’s when I saw the scar for the first time. There wasn’t a whole lot of emotion that ran through my mind at that moment. It was more of inspecting it. Admiring it. Appreciating the fact that despite all the opposition to science, science is what allowed me to be looking at this scar. For without science, this would not have been possible, and I would have just faded away to death over time.

Science still gave me a chance to go on living.

In addition to the never-mentioned-before-surgery-catheter, I also had a tube coming out of my chest. A drainage tube.

The more I think about it, the more I think it’s probably a good idea that I wasn’t told before surgery about the catheter and drainage tube. It would have driven up my anxiety which, as you recall, was already hopping around the upper atmosphere when this whole thing started. In any case, the drainage tube was for draining the crap from the incision on my neck, and every once in awhile a nurse would come in and empty the drainage bottle. Yeah, it was pretty disgusting. I didn’t watch.

So I was wrong when I told you all he’d be removing a couple of lymph nodes from my neck. He actually removed somewhere between 40 and 50. They have to go through pathology for us to know how cancer may have affected them, but in any case, this is why I had the drainage tube -- I lost a bunch of lymph nodes on the right side of my neck.

Inside my mouth he took out the right tonsil and the cancer tumor. It was about the size of a walnut and he said he got really good margins around it. That’s great news. But that’s also what causes the pain. My tongue really hurts on the right side and it is very difficult to move it around. This is what makes chewing and swallowing very difficult. The pain level fluctuates between annoyingly sore and completely on fire. Sometimes just swallowing water can cause such a burning sensation on my tongue that all I can do is force the water down. Other times, it’s much easier. Anyway, I digress.

My incision was put back together with a total of 17 staples. Rachel asked Dr. Kim how long I'd have the staples and he said that since they were stainless steel they could stay there indefinitely. So I'm thinking I've got some cool new body art to show off!

But you know, I’m not really into extreme body art.

The staples will come out in a week or so.

Here’s the first picture Rachel took after I got back from surgery. I'm still pretty wasted from the anesthesia.

That goes all the way behind my right ear. Oh and look, there’s the drainage tube I was talking about. Cool, huh? And what’s up with that huge bruise on my shoulder? That’s not even near my neck. Not cool.
Since he had to cut a nerve on my neck, I have permanently lost feeling in the bottom half of my right ear. I knew that was going to happen. In addition, my face near my ear, along with just below my chin on the right side, are also numb. I think they may be getting better, but I forgot to ask him about it. I’ll ask him later if these, too, will be new, permanent features.
Anyway, that’s 17 staples. Well, 17 is a cool number because it’s a prime number and prime numbers are awesome. So I was cool with 17 staples.
More math because it’s what I do:
After a while the nurses recommend you get up and start walking around. You know, get the body moving, get to taking deeper breaths; all that shit so you don’t get pneumonia or blood clots. (By the way, when I was in my hospital bed they had these air massagers on my legs. They were pretty cool. They would periodically blow up and massage my lower legs to help with preventing blood clots. And by “periodically” I mean every minute or so, probably less. They looked like legwarmers. You know, from the ‘80’s. Ugh, I know.)
So I started walking.
The first time out I was able to make one lap around the nurses station, with of course, a nurse by my side. When Rachel was around she would walk with me instead of a nurse. Eventually I would be able to do my laps without anyone walking with me. I kept a chart of the number of laps I would walk each time out:


Now some of you will understand that pattern, that sequence. The rest of you are probably not familiar with it. That’s fine. It doesn’t really matter if you are. It’s just an awesomely cool pattern that is very prevalent in our world.
The next number in the sequence is 21. A mile is about 17.5 laps around the nurses station. Rachel didn't want me to try for 21 laps. I didn’t. I only did what I could do. The next time I went out I did 13 more laps. So for all of Saturday I did 5, 8, 13, and 13 for a total of 39 laps. This is about 2.21 miles for the day. I thought that was good enough and called it a day. I wish I could say I slept well. Unfortunately, I didn’t.
One of the side effects of painkillers is constipation. Because of this, the nurses try to keep you balanced by giving you laxatives. So, early on they started giving me Mirilax and some other laxative that is in liquid form and tastes just excruciatingly disgusting. There really are no words for me to describe how bad this shit is. In any case, with the help of water and the Mirilax concoction, I got it down. With pride, I showed my nurse when she came to check on me.
I think this shit might be some powerful laxative or something. I really don’t know, so this is pure speculation. They gave it to me every 12 hours. The Mirilax was every 24 hours. Did I mention how nasty this shit was? I'm more scarred from the laxative than I am from the surgery.
So there I was on Saturday night, basking in the glow of the 2.21 miles that I had walked. I asked the nurse for oxycodone, put on my Native American Flute playlist, and drifted off to sleep.
Around 11:30pm I woke up. It was about time for another dose of oxycodone. My plan was to do what I did on Friday night: oxycodone three times through the night and I slept very, very well. Instead, at 11:30pm I woke up and called the nurse. She came in and asked what was up. I told her I thought the laxative was working. She said, “Good. You need to go to the bathroom?”
I said, “I think I already did.”
And sure enough, I was sitting in shit. I didn’t even know that I had gone.
Just fucking great. I thought.
It took a while to get cleaned up. Kind of difficult with a tube hanging out of my chest, but at least the IV was gone by this time.
I got back in bed and my intestines were just doing jumping jacks. No, wait, actually they were doing the entire gymnastics routine: Flips and swings and jumps and tumbles.
I decided not to take any more oxycodone that night for fear I would be so knocked out it would happen again.
It is what it is.

On Sunday while I was doing my morning laps around the nurse’s station, Rachel and I ran into Dr. Kim and a different resident. He was doing his rounds. He asked how I was doing and if I could swallow water. I said yes, and he said, “Then let’s get you home.”
I shook his hand and thanked him for everything.
Rachel did the same.
He said, “Go home and see your kids.”
So we spent the morning preparing to leave.

An hour or so later the resident that was with Dr. Kim earlier came by my room to take out the drainage tube. “Is this going to hurt?” Of course I asked that question.
He said taking the sutures out might pinch a little but taking the tube out should not hurt. Like it mattered, right? As with the catheter, this thing was coming out whether it hurt or not.
He was right. It did hurt a little bit when he cut the sutures. Then he pulled the tube out and this incredibly strange feeling occurred up my neck. It was wild. The tube was up that high to get the drainage so of course I'm going to feel it as it’s moving to exit my body. Again, though, the weird feeling didn’t last long.

There were about 14 nurses, nurses assistants, and secretaries that I interacted with. This did not include the Nurse Manager who came by to see me on Friday. She was a lovely lady. My first nurse, Chris, had told her about me on Thursday, and she, Melinda, wanted to check on me and see how I was doing. It may have been routine, but I appreciated the visit.
I won’t list all 14 of the people here. That’ll be in a letter for Melinda. But I do want to say one nurse stood out far above the others. She was my nurse on Friday, Saturday, and Sunday, so she was with me longer than any of the others.
Her name is Elhan.

And she was simply fantastic.

Incredibly kind and caring with a terrific sense of humor. She lit up the room every time she walked in. All three of us, Rachel, Jeff, and I, could not have had a better experience. For what I was going through, she never made me feel anything other than myself. I consider myself lucky that she was assigned to be my nurse. It is not possible to express the gratitude and appreciation I feel toward her.

Nurses really do run the show at hospitals.
Be kind to them.
Thank you, Elhan. Not for just doing your job, but for talking with us, laughing with us, and for treating me so well in such a desperate time of my life.
So it was a very emotional moment when it came time to leave. I was sitting on the bed when Rachel gave Elhan a hug. I heard Rachel start to cry, and I knew I was going to, there would be no stopping it.
I let the tears flow as I gave her a huge hug and thanked her for everything she did while I was there.
Then we said goodbye.

And we headed home.

Wednesday, May 18, 2016

Surgery

It was quiet. Only the buzzing of the overhead lights disturbed the silence in the room. I looked out the eighth floor window to stare at the skyscraper across the street. It was a bright and sunny day in Seattle.
What the fuck am I doing here on this beautiful day, I thought. What do I do now?
My wife gently squeezed my hand.
“I’m scared to death,” I confessed.
“You should be, sir,” the doctor replied, his stern, serious tone underlining the gravity of the situation. “This is cancer.”


I chose to have surgery to get that thing out of me. It will give us more information and help direct the next strategy. That strategy could be anything from full on chemotherapy and radiation, to doing nothing else after surgery. It all depends on what comes back from pathology.


The surgery, though, is going to be a rough road. As I have said before, it is quickly becoming the most terrifying day of my life.
I’ll be cut open in two places. (Yay, me!) Inside my mouth to get the right tonsil and the adjoining tumor, then again from behind my right earlobe down to just above where my neck ends (somewhere in that area, anyway) to get the lymph nodes. Rachel and I are already comparing scars and I don’t even have mine, yet.
Robotics will be involved with taking out the tonsil and tumor, but the lymph nodes in the neck will be taken out the old-fashioned way: surgeon’s hand and scalpel. The doctor said my scar will be a doozy. Great. I’m already picturing myself looking something like Frankenstein’s monster. Hey, Halloween could be fun this year!
“Oh, I love your costume, Randy!”
“Um, thanks, but I'm not wearing a costume.”
“But your neck, the scar looks so real.”
“It is real. That’s how they sewed my head on. Now give me a hug.”


In reality, I hope it doesn’t freak out my kids.


When Rachel shaved her head at the beginning of her chemo treatments, our youngest couldn’t bear it. He could not watch mom lose her hair so he ran off and hid. It took us awhile to find him. After that he was always more comfortable when she had a hat on. I think it made him sad to see his mom without hair.
So I'm kind of concerned how they will react to this giant scar that will be running down my neck and can’t really be hidden.
Maybe they’ll think it's cool.
Maybe they won’t.
The good news, though, is the doctor said after about a year or so it should be very difficult to see that I even have a scar. Hopefully he’s right. We’ll see.
I'm not sure how long I will not be able to talk after surgery, that’s relative to each person, but I’m sure it’ll be several days.
The pain is also relative.
Yeah, not looking forward to that.
The doctor also said he will not release me from the hospital until I can swallow water.
Now stop and think about that for a minute.
That’s the bar.
I don’t think the bar can be any lower. I mean, it’s swallowing water. Not food. Not ice cream. Not pudding. No. It’s swallowing water.
He told me to expect to lose 25-30 pounds. That’ll put me just a little bit more than what I weighed when I was in high school, and that was thirty years ago. When I told a couple of my colleagues I should expect to lose this much weight, one of them asked “From where?”
You gotta laugh or you’ll go insane.


The surgery itself doesn’t frighten me. Instead, I’m grateful to live in a time where we have the technology to do such things. After all, it wasn’t that long ago when we couldn’t do them.
No, the thing that frightens me is the aftermath; the not being able to swallow; not being able to talk; and definitely all the pain I will have to endure.
But it is what it is.
I will get through.


I am most disappointed that I must leave my classes for awhile. In fact, I may not be back to see them before the end of the quarter. I told them I’d try to be back for final’s week, but there’s no guarantee. I’m hoping I will be able to.
I love what I do, and I enjoy helping my students learn math. So, yes, I will miss my classes. Oftentimes, they are the highlight of my day.


So that's the plan. Kind of a shitty plan, but obviously a necessary one.

I will endure.

Thank you for listening, my friends.

Thursday, May 12, 2016

Don't Count Me Out Yet

From December 2003 to January 2004 I spent 17 days lying in a hospital bed. I had staph endocarditis. Bacteria was growing on my aortic valve and then traveling through my bloodstream to all parts of my body. I was dying.

At the time, I didn’t really know how close I was to death, and I'm thankful my doctor and wife didn’t tell me. I didn’t need to know.

After a week of being at home thinking I had the flu, but only getting progressively worse, I made it to the doctor. I was weak. My thoughts clouded in fog. While following the nurse back to the examination room I heard her ask my wife if she thought I needed a wheelchair. I was ten steps or so behind them, but I heard. I responded by saying “No, I can make it.” And I kept on with the painfully slow steps toward the room.

My doctor didn't stay with me for long. I don't remember seeing him or even really hearing him, but I know he told Rachel to take me directly to the hospital. Do not go home. Do not pass Go. Do not collect $200.

When we arrived at the hospital they were waiting for me. They wheeled me up to the second floor and into the room which would be my home for the next 17 days. I was pretty incoherent, but I remember there were three or four nurses, along with Rachel, in the room with me. Two or three of the nurses began to undress me, I was way too weak to do it myself, and another one began asking me questions. I remember they asked me when my last visit to the dentist occurred? I thought, the dentist? What the fuck does that have to do with anything? Rachel told them it had been a couple of months. Now I know why they asked me that question, and now I must take antibiotics an hour before every visit to the dentist.

Then, as they were getting my flannel pants off, and after the dentist question, one of the nurses asked if I wanted a preacher sent to my room. Now at this moment I have no strength and my conscience is balancing on the edge of the living and the I don’t give a shit anymore, but without missing a beat I said

“Don’t count me out, yet.”

Obviously I survived. The road to recovery was extremely long and tiresome, but I got there. I owe a tremendous amount of gratitude to my doctor and the team he assembled, along with all the nurses at the hospital. Without them, I would not be here today.

And today, I learned I have cancer.

For the past two years I’ve been touched by cancer pretty much constantly. My dad, my wife, and several friends or relatives of friends. Some survived, some didn’t, and some are still fighting.

I’m tired of cancer.

But now it’s my turn.

Like we eagerly wait in line with our tickets in hand so we can finally ride the cancer roller coaster. Here are my five tickets! Let’s go! Let’s go! Let’s go! I get to ride in front!

It’s in my tonsil (What the Hell do I still have those for, anyway?) and after I saw the CT scan, it was pretty obvious. So, when I got the official diagnosis a few days later, it didn’t come as a surprise. I wasn’t really freaked out, though, until the day of the pet scan. That has been the most terrifying day of my life.

All I could think about was what happened to my dad. I was terrified that after they ran the radioactive shit through me, and then slid me under the scanner for half an hour, that my insides would light up with hundreds of lightbulbs, all of them cancer tumors, where neither surgery nor chemotherapy/radiation would be beneficial. I couldn’t help thinking that I was a dead man walking, and I dreaded every moment until the doctor told me otherwise.

The only things that really lit up were the same ones that lit up after the original CT scan: my tonsil and a couple of lymph nodes in my neck.

This means I still have a fighting chance.

So fight, I will. <In my best Yoda imitation>

My options now became having surgery to get the tumor and nodes out (which would then give us a lot more information regarding what I am dealing with, and allow us to plan the strategy accordingly) or to not have surgery but instead have full on chemotherapy and radiation.

I opted for surgery so we could get more information.

Now the surgery day is quickly becoming the most terrifying day of my life. More on that at a later date.

So that’s the story up to this point.

I have joined the club no one wants a membership to.

I have cancer.

But as I have said before,

Don’t count me out, yet.