Sunday, July 31, 2016

Battles

As parents, we learn to pick our battles with our children.

As people, we learn that sometimes we don't get to pick our battles. Many battles are forced upon us either from external or internal forces.

Battling cancer is a not a battle we choose to take on. It is forced upon us. It invades our life. Sometimes as fast as a freight train, other times as slow as a snail. Since getting cancer is rarely expected (I mean if you're smoking cigarettes then getting cancer should be expected) then when you learn you have it, it's like your head was clubbed with a two by four. It takes a long time to process everything you are being told. In many cases everything seems very urgent and things begin to move very fast. But your head is spinning with information. That's why it's very important to have someone with you when you have these doctor visits. This person should take notes (because you're really not in the frame of mind to do so) and ask questions if they have any. These supporters are our advocates. We need them. We need their strength.


Rachel's my rock. I would've floated off long ago had I not been tethered to her and her strength. She is by far the best note taker in the family. I suck at it. Badly. She has accompanied me to several of my doctor appointments and always does a fantastic job of taking notes. When she was battling breast cancer last year, she had good friends go with her and they would take copious notes. Yeah, I'm jealous of all these people who are capable of taking such good notes on the fly. I find it amazing.

If Rachel is unable to join us at the doctor visit, then we resort to using FaceTime during those appointments. So she's there. She hears the conversation and can ask pertinent questions. She's taking copious notes. (I think it's just something she really likes to do.)

Battling cancer could possibly be the most difficult thing you may have to do in your life.

In fact, it becomes your life.

Almost every thing you do revolves around your cancer and the corresponding treatment.

Literally, almost every thing you do.

Oftentimes it is overwhelming.

And while the battles between you, the mountain, the mountain lion, and the god damn bear are the main battles, more subtle ones begin to take place.

My newest battle: anxiety.

And it is achingly high.

It's prevented me from eating, has caused nausea, and even a little depression. These all become smaller, yet no less important battles that now have to be taken on. But we only have a limited amount of energy. You do the best you can. Sometimes it works. Sometimes it doesn't.

I've never had to really deal with high anxiety before, so it took awhile before I even figured out that's what was going on. It's a horrible feeling and I am trying to keep it at bay with medication and cannabis. Most of the time these work and I'll be able to eat some food. Not that the food tastes good, mind you, but at least my nausea isn't so bad at the time that I can get some food in.

Clearly I should have anxiety. I understand that. The next chemo treatment, even at 1/3 the original dosage, frightens me to no end. It's difficult to not think about this next bear attack, but it terrifies me. I can not overstate that enough. After what happened the first time, yes, I am terrified to get my next chemo treatment. So my anxiety hits the atmosphere when I think about the next one.

I think that's fairly normal. Think for a minute about what they are putting into the bloodstream. That shit is not supposed to be there, so you're body acts like it's supposed to act when a foreign body has entered. It tries to get rid of it. The anti-nausea and other medications are to trick the body into thinking this foreign body is ok and to help keep it in your body.

I guess most of the time they do a pretty good job. Unfortunately, that's not what happened in my case the first time. Here's to hoping for the best for the second time around.

Because of this battle I've been having with eating, I got a g-tube. The anxiety was high that day because what if I have seizure and they can't get the tube in? You know, all the things that can go wrong rifle through your head because you're scared shitless.

To do the procedure they needed to place an air tube up my nose, down my esophagus, and into my stomach. This allows them to blow air into my stomach so they can find it easier. Ok, that's a good thing. Wouldn't want this tube going into my liver.

Now I've had several ENTs scope my vocal chords and throat before. They use some numbing spray that works generally pretty well. The difference here is they don't use such numbing spray. Instead they use some numbing gel. And while the ENTs go to the back of my throat, this tube needed to go down my esophagus. So it has to go in at a different angle. I was told this is the part that most people have trouble with.

Ok.

I literally screamed "Fuck that hurts!" as he got the tube past the painful part. And hurt it did. Like a burning stick being shoved, and that's the word "shoved", right up my nose. God damn that hurt.

Once we got past that, things settled down and the pain disappeared. So now I'm laying on the bed. with this tube sticking out of my nose. Here's what I looked like. You might click the picture and enlarge it so you can get the full effect.


They then did a CT scan to find my stomach and mark where it was. Then they wheeled me to radiology room where they did the procedure.

I was awake for the entire thing.

Oh they had me on a couple of drugs, but I was wide awake. The worst part (after the nose incident, of course) was when they deadened my stomach. The needles hurt a bit. Once that all kicked in, though, I didn't feel any pain. I could feel pressure, but no pain. I even made a joke during the procedure, so we all got a bit of a laugh during this stressful moment.

They then wheeled me back to my recovery room where Rachel and I waited until we got discharged.

Now the nurse pulled the tube out of my nose, and yes, it hurt just as bad as it did going in. It was not a fun afternoon.

A little while later later Rachel drove us home. Literally, as soon as she parked the truck in our driveway, I began throwing up.

I threw up for the next three hours.

And oh did my stomach hurt.

And this wasn't dry heaves either. My best guess was that when they put the tube in my nose it caused my nose to bleed (there was evidence of that). I think I may have swallowed a lot of blood, and that blood was needing to come back up. It did.

It murdered my stomach muscles. I couldn't move much so I laid by the toilet for around three hours. When the nurse got there later that evening I managed to get into bed. They gave me some meds and I went to sleep. Exhausted.

I know I said earlier that I did not want a g-tube. Mainly from fear of losing the ability to swallow on my own. But now that I have the tube, and Rachel and I are figuring it all out, I have to say that I was wrong. The g-tube has been very helpful. I'm stronger today than I was just a few days ago, and I owe all that to Rachel being able to get nutrients into me. (Of course she's never allowed to tell me what she puts in her concoctions. It's best that I don't know.)

Rachel was messing around with a new app and this was the picture we liked the best. It's the g-tube.


The effects of radiation are starting to kick in, and this week could be the week they increase in intensity. Not looking forward to that.

So that's the latest. Radiation treatments 14-18, and chemo treatment #2, are all this week. Looks like I'll battling high anxiety this week. Ugh.

I'll leave for now with the following:

"We can rebuild him. We have the technology. We can make him better, stronger, faster..."

Screw that! I'm just tired of being cut into!


P.S. I wonder how many people got my reference?

Saturday, July 23, 2016

This Was Not Part Of The Plan


Sometimes the pieces of your life inexplicably explode.

Most pieces land somewhere close around the edges, fairly easy to find and put back in place.

But some pieces are lost forever, leaving a hole for all eternity.

I wasn't terribly anxious about getting my first chemo treatment. After all, it wasn't that long ago that I watched Wonder Woman (My Wife) fight through her treatments, and in general she did fantastic. I used to make the joke that on chemo weeks she would be "useless" for about 4 days. It just knocked her out and the boys and I rarely saw her. But I was wrong. She wasn't useless because the could actually still do many things for herself. Sure she couldn't help with the boys (which practically made her useless to me) but in general she was still functional.

So, in kind of a bad way, I had an idea of what to "expect". I put the word expect in quotes because each cancer is different, each person reacts differently to their cancers and/or treatments, and, quite frankly, I was wrong.


Got the 4-hour chemo treatment. Then about 5:00pm I started feeling a little queasy. Not bad, just kind of uncomfortable. By the time Rachel got home from her Book Club meeting around 10:00pm or so, I was passed out (in bed asleep). No memory of her getting home. Slight memory of some quick conversation while she got ready for bed. Then nothing else.

It was like the walls of my life enclosed me, wrapping me in my own personal hell, all the while attempting to asphyxiate me.

I was going to delete the previous sentence, but I think I like it. It stays.

Anyway, the day after chemo was a living in Hell. Actually, I might have been a zombie in TWD. I would have preferred to be a zombie!

Rachel got me to my daily (the second one by this point) radiation treatment, but after I got done with that (which takes about 15 minutes total), she had amassed a team of doctors and nurses and I was being shuffled off to a room to get fluids.

Um, this was not part of today's plan.

Life with cancer.

Rachel and the boys picked me up four or so hours later and we headed home.

Now know that at no point have I actually vomited. This is all that nausea feeling that is kicking my ass.

I can eat. It all sounds disgusting. And now, the smell, sound (saying the word out loud), and even the word itself, vanilla, makes me queasy. This is painful. Part of the plan was to have vanilla milkshakes through this crap because it's my favorite flavor.

I should've known, this was not going to be part of the plan.

So vanilla is out. Can't do it at all. I hope that is not a permanent feature.

But everything I eat tastes disgusting. So much so that I often can't eat it and I have to look for something else.

I hate it.

Enough about food. It's going to make me wretch.

So after I received some fluids, for over four hours, we had the same plan we started with. Take the anti-nausea meds like clockwork.

Seems simple. I had already done what was recommended so it's not like I wasn't trying to stay ahead of the game. I even set an alarm for the middle of the night so I could continue taking my meds through the night. I was told that most people don't feel the nausea pains until day 4, and that's usually because they had not been already taking their anti-nausea meds.

My nausea began the same day I received my first dose of chemo.

And I was unable to recover.

What I've learned: I'm not "most people".

For five days I didn't get out of bed. I slept for literally 18-20 hours each freaking day. I didn't eat for days. (This of course made the whole nausea feeling worse.)

I was unable to really do much of anything for myself.

I began vomiting three days after treatment. The fourth day got worse. And the fifth day after treatment was the worst day (in terms of vomiting).

And as the days moved on, getting to the Cancer Center became more difficult for me. Riding in the truck was too much movement and caused vomiting. But I had to go.

The fourth and fifth radiation treatments, which corresponded to days 6 and 7 after my chemo treatment, I ended up vomiting while on the table to get treatment. Once after treatment was over, but once before it began, causing us to delay that day's treatment. I did end up getting radiation on that day, just a little while later.

Seven days after chemo, I was in bad shape. Again, couldn't really get out of bed except to get to radiation, and, I still haven't found any relief for my nausea. And, it's doctor day. So we meet with the radiation doctor and nurse.

Major concern is my weight loss.

Still haven't eaten anything substantial.

I lost about 10 pounds in a week. My weight gets much lower and we'll have to delay radiation. I'll be too weak.

The g-tube was discussed.

We went home.

Relatively speaking, it was the best day yet for getting food into me. (Not that I was able to get a lot into me, mind you.)

Then it all came back up around 6:00pm.

The g-tube wouldn't help my nausea.

And the nausea is what I need to stop.

Day eight after chemo:

Much worse day than the previous day. Woke up around 6:00am needing to wretch at the toilet. For over an hour. Dry heaves suck.

Got to radiation.

Got through radiation.

Met with Physician's Assistant. She was fantastic. Then met with chemo doctor.

The g-tube is again discussed.

Insertion of the g-tube is now scheduled.

It's not so much that I'm going to have a g-tube that bothers me, it's the fact that the g-tube isn't going to do anything for my nausea.

The PA writes out a plan, regarding anti-nausea, to administer after the next dose of chemo.

The next dose of chemo?

That scares the shit out of me.

The original plan was to have three doses of chemo throughout the whole thing. And these are big doses of powerful stuff. Cisplatin is famous for making people nauseous throughout its history. What's been surprising for all of us is that it hit me so fast and the anti-nausea drugs are not working.

So my nurse said we're not going to do that to you again.

And my doctor has now split those last two doses into six smaller doses. So for my next chemo treatment I'll be getting about a third of what I originally got on that first day.

That still scares the shit out of me.

A third of what I just went through, of what I am still going through, terrifies me to no end.

It was, and still is, that bad. My stomach is still in knots. I still have difficulty eating because everything tastes nasty (a side affect of chemo). I'm nauseous most of the time. I'm tired all the time. And we're 11 days out from when I had treatment. I can't feel good about having to endure only a third of that. It scares me.

Then a very good friend posted the following on Facebook:

What It's Like To Go Through Cancer Treatment

And all I can do is laugh and cry through the whole thing because it really is spot on. That is what it's like, at least for me. I'm fighting a god damn mountain lion with a bear that can only fight the lion by going through me.

So I'm getting mauled both inside and out.

The last 11 days have not been a roller coaster, there haven't been any "ups". Instead it's been a living hell. The bear just kicked my ass. I actually said to Rachel, "The chemo is killing me."

Then I went to the hospital (short stay) on the 8th day after chemo.

Doctors were very concerned about fluids. It takes 2 hours to deliver 1liter of fluids into my system. I was to get two liters that day.

The previous couple of days I began using MMJ to see if that would help with the nausea. I'm lucky and very grateful to live in a progressive state where we can do such things legally.

It worked.

At least it works when I am fully "medicated". If I'm only partially "medicated" then it doesn't work at all. So we've added this to our arsenal. Then we promptly ran out of the stuff that was actually working for me. I haven't found a replacement, yet, and so the nausea continues.

But I can tell you that I have rediscovered my love for Pink Floyd. ;-)

In any case, while in the hospital I wasn't feeling nauseous so I ordered pudding. I didn't quite finish it, there was still about an 1/8 left in the container, but when the nurse came in to see how I did eating it, I pointed at the container to show her the top 7/8 that was empty, and said "That's more than I have eaten all total in the last week."

Then I ordered lunch.

Ate half a ham, turkey, and cheese sandwich and part of a baked potato.

I began to worry that I was eating too much after going so long without eating, but everything stayed down. I actually felt pretty good.

On the tenth day after getting chemo I had someone other than Rachel take me to the Cancer Center so I could get my radiation treatment. It was the first time I felt like I could go with someone else. It went the way it was supposed to go: I get there, I lie on table, they put the mouth piece in my mouth and lock me down, they radiate me, I leave. Fifteen minutes.

Then I spent the rest of the day in bed.

That was yesterday. I'm still nauseous, probably at this point from hunger, and everything sounds like it's going to taste nasty, but at least today I am able to finish writing this entry.

So that's the update. I'm getting a g-tube soon, we're cutting the amount of chemo I'll be getting each treatment to a third of the original dosage, I'll be getting weekly chemo treatments, and oh yeah, all those side affects of radiation haven't even kicked in, yet.

Future challenges.

I'm an emotional wreck; I'm tired; I feel like shit; I feel bad for my kids; I feel bad that I can't do more for myself or my family; I cry; I sleep; I cry some more.

Then I run to the toilet to wretch.

This was certainly not part of the plan.

Tuesday, July 12, 2016

The Goal

"We're going for a cure."

Words I was grateful to hear.

Now that doesn't mean we'll be successful in getting that cure, but that's the goal.

And sometimes, all you need is the goal.


I'll be having thirty-three radiation treatments along with three chemo treatments. I guess the chemo they are using is pretty potent. It's really popular among those that like that nauseous feeling. (That would not be me.) They said I'll feel fine for the first three days because they give me some extremely powerful anti-nausea mediation when I get my chemo treatment, but come day four, well, that could get ugly. So, it's absolutely crucial that I take my anti-nausea medication at home. I guess some people feel so good during those first three days after treatment that they don't take the anti-nausea medication during those three days and then they really suffer come that fourth day.

We know this from experience.

Even though Rachel got different chemotherapy than what I'll be getting, she didn't take her anti-nausea medication those first few days after her first chemo treatment. Yes, she payed for it. Let's just say she learned her lesson, and I learned from watching her, and she took her anti-nausea medication correctly from then on out. The nausea situation was much better after that. She was more fatigued than nauseous.

I can live with fatigued a hell of a lot more than I can live with being nauseous. You can bet your britches I'll be taking that anti-nausea medication correctly from day one.

Then there's radiation.

Remember, radiation is the real cancer killer for my situation. The chemo treatment is to actually help the radiation work better. I lie down on the "bed", which is really a hard slab that slides back and forth in and out of, I guess I'll call it, the "radiation chamber".

After I lie down they put a personalized mouth guard in my mouth and then lock it down. This is what it looks like:


It's locked down because we don't want my head moving. Lasers are also used to pinpoint the area that is to be treated. We want to make sure the radiation is focused where it's supposed to be going every single time. It feels pretty crazy and the mouth guard tastes pretty bad, but it's remarkable we're even able to do this.

Now, one of the side effects of the radiation is that my goatee will go away because the hair will not be able to grow. So, here's what I have looked like for at least the past 15 years:


And here's what I look today:


They encouraged me to shave it off.

So there you have it.

I don't think I like it, but maybe it'll grow on me.

It's an aggressive cancer and we're fighting it aggressively with a brutal regiment of radiation and chemotherapy. It's nothing to look forward to, but it's all I've got. We all know the alternative and I'm not ready for that. So this is my shot, my attempt to rid my body of this disease.

All I can do is hope it works.

Monday, July 11, 2016

Yes, Mountains Move

Some days I feel like I can do anything. Kicking cancer's ass is of course at the top of that list, but in general I feel strong, empowered, and able to conquer any mountain that moves to block my progress.

And yes, mountains move.

Those days are great. I feel relaxed and ready to take on the world. Nothing can stop me.

Today is not one of those days.

Today I want to crawl into bed, get in the fetal position, and just cry. (And yes, real men cry.)

I got my PICC line today. It sucks. My arm hurts a little and the whole goddamn thing is just uncomfortable. I can't get it wet, so showers should be interesting. When I had a PICC line before I was so sick that I didn't give a shit about taking a shower, so they were fairly rare while I had the PICC line in. I think I may have resorted to a few quick baths. I hate baths. I'll probably have to resort to taking quick baths again. Ugh.

Here's what it looks like with the "sock" on it, you know, to help keep the end from flopping around:


And here's what it really looks like:


See those two ends on the right there? Yeah, I got a double one. Yay me.

Around 20% of all the people admitted to hospitals around the country end up getting a PICC line. That's pretty remarkable. However, I'm disappointed I'm in that 20%.

But I have to get my chemo treatments.

I have a few more lessons, blood draws, and dry runs before the actual treatments start. I'll have thirty-three radiation treatments and three chemo treatments over the next seven weeks. The chemo treatments are to help with the radiation treatments. The radiation treatments are what's going to kill the cancer.

I'm sure no one ever feels ready to begin this shit. I'm no different. I do want to start because I'm tired of waiting, I'm anxious, and the sooner I start then the sooner it'll be over.

But no, I'm not ready to begin this shit.

But it's been almost seven weeks since I had surgery to remove the tumor and lymph nodes. It will not be good if we wait much longer.

Luckily, the wait is almost over.

Saturday, July 9, 2016

Going Through Hell On A Roller Coaster

I had four medical appointments in three days. Two on Wednesday, two on Friday. So, Rachel and I decided to stay in Seattle three nights and have a day and a half of vacation, something we have not done in at least ten years. I hope to hell it's not another ten years before our next vacation.

Tuesday night: We arrive in Seattle at 10:30pm and check-in at the hotel. I thought this was a very good sign:


A perfect room number for a math teacher.

Wednesday morning: Met with the surgeon who did the original big surgery back at the end of May. This was a follow-up to get the go ahead to begin radiation. Everything looks good, so radiation is a go.

Right after he left we met with the speech therapist. I've met with her several times before as she has always been present during my appointments with the lady ENT at Swedish. She gave me some swallowing exercises because in the not too distant future (probably 2-3 weeks) I will have difficulty swallowing. The goal is to not get a g-tube so I need to be able to keep swallowing, no matter how painful it may be.

After we met with her, Rachel and I had lunch at Piroshkis. We'll probably go back again in the future. It was pretty good. Our good friend Jeff joined us there and then he dropped us off at Half-Price Books while he went back to his place to finish up his work for the day. I could spend hours in Half-Price Books. I love used bookstores. Yes, we found some good stuff.

Rachel and I, then, went for a little walk around the area we were in, actually headed to a real comic book store. It was nice to just walk with my wife on this beautiful day in the big city. I'm not a big comic book guy but it did give us an endpoint to walk toward. Jeff picked us up there and we all three headed to dinner. I don't remember the name of the place we went to for dinner, but man, that was some good Italian food. It was a good ending to a great day.

Thursday morning: Rachel and I slept in (when does that ever happen?). This was the day we had planned to be our "vacation" day. We were going to be tourists, so we headed to the EMP Museum. We spent a few hours around the Seattle Center, mainly at the EMP Museum. It was frivolous and it was fun. I really liked the history of the guitar exhibit. The Nirvana and Hendrix exhibits were cool, too, but, to me, not as cool as the guitar one.

I also really enjoyed the Science Fiction exhibit, Infinite Worlds. There was a lot of movie and television memorabilia. Stuff from Star Wars, Aliens, Dr. Who, and even Mork and Mindy.

The first exhibit we went to, though, was the Star Trek exhibit. On display were several costumes worn by the cast members during filming of the various TV shows and movies, props, such as weapons and miniatures, and even the bridge from the original series. What the exhibit really made me want to do was go home and watch all six Star Trek series. Yes, I'll probably do that. My kids need to watch those shows.

After spending a few hours at the EMP Museum we headed back to the hotel. Jeff picked us up a little while later and we hit, yet another used bookstore (I have an addiction), and then we had dinner.

I was only allowed to sleep four hours or less on Thursday night because I had an EEG scheduled on Friday morning. So while Rachel slept, I stayed up. I slept from 1:00am to 5:00am, and then waited for my wife to wake up and join the living. That took for what seemed like forever.

Friday morning: Had 24 electrodes placed on my head for the EEG. They flashed lights at me and then had me do some quick breathing, all in order to see if I would have a seizure. I didn't. Then I was to rest (sleep if I could) for the next half an hour. I actually did sleep for about 20 minutes. Then the tech woke me up, cleaned my head, and then I was done. Rachel, Jeff, and I then went and had lunch.

Friday afternoon: Met with the epileptologist. This is my third doctor at Swedish. All three have been fantastic. The EEG was normal. That's not really important, though. After all, it was just a quick snapshot, like 30 minutes, out of my day. But at least nothing was glaringly wrong.

The MRI, however, was not normal.

This was the MRI that was taken at the local hospital on the same day I had a seizure on the operating table. Recall that there were "spots" on my brain. We'll now call these "spots" lesions. I have several lesions on my brain. One in particular is located on my temporal lobe. This lesion is probably why I had a seizure.

Here's the best guess as to why I'm in this situation: When I had staph endocarditis back in 2003-2004 and was hospitalized for 17 days, I had petechiae several places on my body. They were like little hickeys except for the ones that ended up at the end of my finger and toe. Those areas ended up turning completely black as the blood vessels there burst.

Essentially what happened was the bacteria that was growing on my aortic heart valve started breaking off and traveling through my body because, you know, the circulatory system and everything. I remember getting an EKG (several actually why I was in the hospital during those 17 days) and actually seeing the bacteria, which looked huge on the screen, flopping around every time my heart pumped. It was amazing. The violent pumping of my heart made this bacteria flop around, literally like a fish out of water. It was pretty cool to see. Not to experience, mind you, but to see it was amazing.

I remember one of the many doctors I had during that adventure was doing the EKG on me one day. This was after the antibiotics had started working and I was starting to feel a little bit better. While he had the EKG gadget on my chest, he pointed at the screen and said, "See that. That's the bacteria." And it was violently flopping around with every pump. "We don't want that to break off your heart valve."

"Why?" I ask.

"We don't know where it might end up," he answered.

In other words, we don't know where it will go, but it could go somewhere that could kill you. Like my brain or my lungs.

A few days later I had another EKG done. When I looked at the screen I could see my two heart valves, but the bacteria that had been flopping around so violently before was no longer there. It had broken off my heart valve.

I was devastated.

When they got me back to my hospital room, I literally just sat on the edge of the bed and cried.

A nurse walked in on me and all I could do was hug her while I kept crying.

I knew I was dead.

Obviously I didn't die, but at the time, I thought that was it for me.

I had several MRI's during that hospital stay and they showed that I had petechiae on my brain. Several places on my brain, actually. And this is what we think caused those lesions that are now present on my brain, including the one that probably caused my seizure. The bacteria traveled to those places on my brain and caused the blood vessels to burst.

Very little is 100% positive in medical care, but this is our best guess as to what has happened.

So I now have a seizure disorder. All it takes is one seizure for you to meet the new definition. I'll probably be on anti-seizure medication for the rest of my life.

That's fine.

Essentially, I had a stroke and didn't even know it.

The really bad news, though, is that by law I am not allowed to drive for six months (provided I don't have another seizure). That's January at the earliest.

This will make things difficult for the Anderson household.

Chemo and radiation begin next week. Radiation is Monday-Friday which means I need to be at the Cancer Center on those days to get treatment. For the next seven weeks. Not being able to drive myself there has put a burden on our daily schedule. Despite this difficult situation, we'll figure something out. Getting to those treatments is the top priority for me and my family.

There's also no swimming or operating heavy equipment, but that's ok. It's just the no driving that is difficult to deal with.

I next see an expert on strokes to make sure there's nothing that's been missed. I'll be doing that after the chemo and radiation treatments have finished. At least that's the plan right now.

As you know, I was unable to get a chemo port because of the seizure. So now the plan is to get a PICC line. Yeah, I said I didn't want a PICC line, but that's what has to happen. I get that early next week because that's how they are going to administer the chemotherapy. I'm not thrilled about it, but it is what it is.

My dad told me once, when he was dealing with his cancer, that getting old is hell. He was making a joke at the time, but underlined that joke with the seriousness of his and my mom's health issues.

I think it's more like: Getting old is like going through hell on a roller coaster.

There are ups and downs and curves and sudden drops and giant hills to climb.

You know, it's just life.

If you're lucky you get to ride that roller coaster for quite awhile.

I'm strapped in, but I refuse to keep my arms and hands inside the car at all times.

Here we go.


Friday, July 1, 2016

I'm Angry, I'm Sad, And I'm Definitely Scared

I woke up, showered with the special cleansing fluid they want you to use before surgery, then, after Stacie got here, Rachel drove me to the hospital. It was to be a routine surgery to put my chemo port in, so, Rachel dropped me off and headed back home.

After meeting with the surgeon and the anesthesiologist they wheeled me to the operating room. I moved from the bed to the operating table, and that's the last thing I remember.

I awoke to nurses telling me I had a seizure during surgery so it was called off.

I'm instantly an emotional wreck.

"I need the fucking chemo port!" I yelled at them.

I know my time is running out. It's been five weeks since I had the big surgery to remove the tumor and lymph nodes. There is still a lot of shit that needs to get done before I can start chemo and radiation, and this aborted surgery is shortening the very little time that I have.

They try to calm me down but I'm having nothing to do with it. I just keep repeating that I need to get the chemo port. It's fairly chaotic in the recovery room but eventually the shock is so overwhelming that all I can do is stare off in space. I block out everything but my thoughts.

What do you mean I had a seizure? I've never had a seizure before. I need to start chemo and radiation soon. Do I now have brain cancer, a fucking tumor on my brain? What the fuck am I going to do now? Why can't I get a fucking break?

Frustration and fear overwhelm me.

All I can do is cry.

A nurse wipes away my tears with a tissue.

I continue to stare off in space.

Then my family doctor enters the room.

I've known this man for the past 15 years. He delivered both my kids and has helped Rachel and I deal with all the shit we've been through during that time. He was the one who saved my life when I was hospitalized for 17 days with staph endocarditis. He knows us very well and we have a terrific relationship with him.

We make eye contact.

The ability to control my emotions disappeared and all I can do is cry even more. Sob, actually. I'm just livid and sad and scared. Crying was all I could manage to do.

He touches my arm and says "I know, Randy."

Through anger and tears I reply, "I need my fucking chemo port, Rob."

A nurse wipes away more tears.

He had seen the report of the aborted surgery and he just wanted to come down and check on me.

That's who he is.

My family is lucky to have him as our doctor.

His presence helped ground me. Oh, I'm still pissed off and scared shitless, but I started feeling the ground under my feet again. He gets credit for helping that happen.

They want to keep me overnight to make sure I don't have another seizure. So after Rob leaves, they wheel me up to my room on the second floor.

Another shitty hospital room.

Another shitty hospital bed.

Another shitty fucking day.

Unbeknownst to me, our friend Stephanie, who is a nurse at the hospital and actually helped get me ready for surgery, called Rachel and told her that I had a seizure and she needed to get to the hospital.

The nurse is getting crap hooked up to me when Rachel enters the room. I think our friend Stacie, who also works at the hospital, is behind her but I can't see for sure.

The nurse walks out of the room for a minute.

Rachel says "How are you doing?"

I start punching the bed and screaming "I'm fucking pissed, that's how I'm doing! Fuck! Fuck! Fuck!"

She remains calm.

We're alone in the room. So if it was Stacie, she exited.

If I had had something to throw I would've thrown it. But I didn't, so I just kept saying I was pissed off and I needed my chemo port.

The nurse came back into the room.

Rachel and I stayed quiet, but I'm sure we both we're thinking the same thing: I have brain cancer. I'm a dead man.

A short while later they take me to get an MRI of my brain. That was fairly uneventful.

Then it was back to the hospital room.

There was a lot of just staring off into space.

I was in shock.

It was around noon or so now and I had expected to be home watching a soccer game. Instead, I'm staring at another hospital room wall.

Rachel wrote our goal/plan for the day:


It was a good goal.

By this time Stacie had joined us in the room. I think she and Rachel had lunch while I had the MRI. Doesn't seem like a fair deal, but anyway. I still hadn't eaten since 6pm the night before, so Stacie suggested ordering a ham and cheese sandwich for lunch. It's not on the menu. She says to order it anyway. Rachel calls in the order. Oh yeah, and a vanilla shake. They have recently become staples in my diet. Stacie was right, it was a pretty good ham and cheese sandwich. I devoured it fairly quickly. And the shake? Let's just say that I had three more of those before I left the hospital the next morning. (Of course I had one with breakfast. You think I'm foolish?)

The MRI results come back. No one could see a mass on my brain, but there are these strange spots on it. More spots than should be there for a 48 year old non-smoking, non-drinking male.

But the doctors are thinking I have brain cancer. They contact Swedish Hospital in Seattle and the plan is to transport me to Swedish because they have more tools to deal with my situation.

Wait. You're going to transport me to Swedish? Like, tonight? This is all moving way too fast.

By this time our friend Bonnie had joined us. When we got the news about being transported to Seattle, Rachel and Bonnie headed home. Rachel had to get things ready for the boys (and where they would stay because they certainly were not going to Seattle with us), handle what to do about the dog, and get stuff ready for us to go.

Stacie stayed with me. A good thing, because I was still livid about this whole situation. She kept my mind focused on other things.

Then our friend Laura, who happens to be a pediatric doctor and therefore knows most of the doctors in town, shows up and the three of us have a good conversation while we wait. Stacie has to leave, so it's just me and Laura when the doctor comes in.

The neurologist at Swedish had looked at the MRI scans and he didn't see a mass either.

That's good news.

Yes, he saw the spots, but he didn't think there was anything that required urgent care. In other words, he didn't think I needed to be transported to Swedish.

That's even better news.

So when Rachel and Bonnie showed up, Laura and I were in a fairly jovial mood. We had just had a great conversation about parenting. I know she understands the struggles that my family goes through, and I certainly understand hers.

We didn't do a very good job of explaining the situation to Rachel, so Laura went to get the doctor. She came in and updated Rachel on the situation and verified that we were not going to Seattle that night.

Finally, things slow down a bit.

I slept well, even though it was in a hospital bed. They put these pads all around the bed just in case I had a seizure.


See those blue pads. Yeah, I felt like I was in a padded room. At times this whole experience leaves me feeling insane, so maybe it's not far off the mark.

I only woke up a couple of times during the night, which for sleeping in a hospital room is pretty damn good. I was up for good around 5:00am. I just listened to music, watched the sunrise, and tried to come to terms with my thoughts.

Our family doctor, Rob, came in around 8:00am or so. One of the things I like about him is that he always stays calm. He tells it like it is but it is always in a calm, relaxing manner.

He had looked at the MRI, and just like everyone else, he didn't see a mass either. And just like everyone else, so far, he didn't know why I had a seizure.

But he did say I could no longer drive.

Fuck.

Tesla and Google need to hurry up so I can get one of those self-driving vehicles.

As usual, it was comforting to talk with him, especially when I am in crisis mode.

So, at the moment, no one is thinking brain cancer. The plan is to go to Swedish and have an EEG and discuss the situation with a neurologist (because I need, yet, another doctor). We'll do this soon. I need to know what's going on with my brain.

As far as I'm concerned, the plan for chemo and radiation is still on track. We'll see if they'll put a chemo port in over at Swedish. If not, then I'll get a pick-line to administer the chemo. I have experience with a pick-line, and I don't really want to go that route. They suck.

One good thing about my hospital room, though. The view:


It's hard to see, but yes, that's Canada across the water. Simply beautiful.

I am very grateful for Rachel, Stacie, Christine, Bonnie, and Laura. Rachel, because without her, well, there would be no me. Stacie, Christine, Bonnie, and Laura for all the help they offered during this most tumultuous time in my life. Christine, thank you for watching my kids. Stacie, Bonnie, and Laura, thank you for spending time with me in the hospital and for keeping me somewhat grounded when all I really wanted to do was scream, cry, throw things, and break anything I could find. I can not express my gratitude enough.

So, not what we expected when we woke up on Thursday morning, but, it is what it is.

You move forward or you give up.

I'm tired.

But I'm not ready to give up.

I'm angry. I'm sad. And I'm definitely scared.

But there is no way in Hell I'm giving up.