Must haves

If you get squeamish stop reading.

1. Disposable baby wipes.
      Even after this process is over these things are going in my car. By golf bag. My desk.
2. Neosporin +pain relief (or aloe with lidocaine)
      You are going to want to be able to walk as normally as possible
3. Large vessel to pee in if you get stuck in traffic.
4. Thank you letters. There are so many people who have helped and are scheduled to help. I can’t thank you enough. And a hand written note is just the right thing to do.

I suspect I will be adding to this list

8 down. 20 to go.

Stuck on 6

So today was supposed to be my 7th of 28 treatments. 25% of the way. But to no avail. When there is any doubt in the proton machine they shut it down. Apparently this device is so sensitive they keep engineers on sight monitoring 24/7.

This means I get a Sunday make up date right before thanksgiving. Hopefully no more hold ups.

Friday!

Just walked in for my fifth treatment. I will be walking out in a few hours to fly home and hang out for almost 48 hours.

Interesting rollercoaster of thoughts this morning. Practice was fine. Just one of those days you need the mental nudge/personal encouragement. And it was definitely good to finish. As we neared the end of practice my mind started to drift on what I was going to do today and I realized I have to go to treatment. At 11:00 I get zapped. There’s no way around it. It was sort or surreal to realize I have to do this.

After practice I jumped on the MARTA and put in my headphones and put on Agent Of Good Roots. This band has strong richmond connections and I used to watch them weekly on wednesdays at alley cats with some old roommates back in the 90’s. I recently got a text from one of the roommates. He was in town for the night and Agents was putting on a special show. With everything that was going on with me I didn’t have to gusto to go watch them and see the old roommate. I knew I needed to be home with the family.

So I had my own mint concert on the MARTA. I think I sang a few lyrics out loud. I don’t think anyone in the entire MARTA network has ever heard of them or has them in their music rotation.

The music definitely put a smile on my face.

Have a great weekend and turn your favorite song up to 11 this weekend.

Fancy meeting you here

So this morning at swim practice, in my lane, was another Spider. Rusty who swam for Richmond a few years after me was warming up as I got to the lane to jump in. I've been fortunate to get to know Rusty, Bob, and Jamie, who always return to UR for alumni swim meet weekend. So there are now two Spiders, in Atlanta, Swimming in the morning, at Dynamo's Chamblee pool. It's not like there are many of us around the country, even less of us swimming regularly.

I get to fly home tomorrow to hangout with the family. On the agenda, Fast and Furious with my oldest.

I gotta PEE!

So today, I thought I would drink a little more water, a little earlier, so I would not have to listen to waterfalls. So I was on my third bottle when they came to get me. So of  course today, they scanned me, I was slightly off kilter, so they had to adjust me and scan me again, then when it was my turn to get Protons I was last in the queue, 5 minutes seemed like an hour, then the gantry rotated for the other hip, and boom back of the queue again, so it was my longest stint on the table and boy did I have to go, then Stephanie from the CT scan group came in and said, come with me, you are scheduled for another CT... "Do I need a full bladder?", she said yes. Come with me, up the elevator, into the CT room, oh, and my blue markings needed updating, so there is another minute... so this is now my only discomfort, but man, when you gotta go, you gotta go.

Acupuncture works for me

Over the last few weeks my nighttime trips to the throne have increased. Not sleeping well can have that affect, or is it that I have to pee, keeps me from sleeping. Over the last few years with some back issues I have found that acupuncture has worked to ease the pain. My back has been bothering me for a few weeks and I did not have the time to see anyone in Richmond, so I found a guy here in Atlanta, and wow, was it different, yet, I got the needles, but he started hooking them up to stim, then he flipped me over and showed where my liver was irritated which can store energy (middle back) and placed needles around my liver, he was also asking about me sleep, my digestion, too long of a story, but last night I went straight through. Not bathroom breaks, no waking up every hour. I hope it lasts, because walking to a bathroom in the dark in someone elses house always has its risks.

TLC day 3

Today it’s getting real. So I’m trying to stay active while I’m down here and will be swimming with the dynamo masters. Like everything in Atlanta it’s 50 minutes away. It’s a nice drive since I get up at 4:30 to get my coffee and get on the road. Day one on the pool deck was chilly. They bubble their pool and someone left one whole side unzipped. It was 46 this morning. It’s a nice sized group and like every masters group I’ve swam with very welcoming.

So at my treatment today I arrived a little early and was able to talk with some of the people who work upstairs that I’ve gotten to meet during this process. They real are nice down here.

So today I get downstairs and start drinking my water. They call me in and “the final countdown” is playing. The guy before me it was his last day so they have a playlist for the last day. Next “closing time” came on. Followed by “bye bye bye”. So they run the ct and guess what. My bladder isn’t full so they tell me we have to wait five minutes. This is when I make my first song request. Can you play waterfall sounds? So Christina and Manvi play the sounds of waterfalls. The next track sounded like a man peeing in the shower. We all got a laugh out of it. And the sounds worked. Zap zap. 25 to go.

I expect them to play TLC “don’t go chasing waterfalls” tomorrow.

Day 2

Today was the day to send the family off to the airport while I walked I for treatment. It was tough seeing them go. But knowing this is the best decision to be at Emory helps make it easier.

Treatment today went crazy fast. Appointment at 12:00. Out the door by 12:17.

Headed back to the lake house. Tried fishing again to no avail. Must be the hooks. To big for the small fish I’m attracting.

The aquarium

The Atlanta aquarium is apparently the largest in the world. It’s not the size that is impressive. It’s how they use it. They have four whale sharks. They are currently 27-32 feet in length. We were able to go behind the scenes and watch them feed them. And they are like koi feeding with their mouths above the surface as a little rubber boat stays in front dumping tiny krill in their mouth. They are huge.

Day one

Off to the proton center. We start with a 50 minute drive to the first Marta station. Of course the parking lot is full so off to the next one. After a pit stop at Starbucks we got the kids on the train.

During the ride there are nerves. I know I’ve done my research but man it’s here. So I arrive at 11:45. They send me into the waiting area where I put on my gowns and start pounding water. The room is comfy with a few guys in there. The tv is showing andy Griffith. Don knots is a true legend.

Before I go in the techs show my kids the room I get zapped in.

I enter the room and up on the table. Every time I get up they line me up. Then a quick ct scan. Then some readjusting. Then the techs say I’m ready and they leave the room. Then the proton gun lines up and nothing. 2 minutes of dead silence. Then it rotates overhead and lines up my other hip. Then silence for 2 minutes. Then the techs come back in. Okay. You are done. Just like that. I walk out it is 12:45.

Next. Of to the aquarium.

We made it

Sorry for the delay in posts. We have been quite busy. And I forgot an important part of my computer.

The family drove down on Sunday. The trip for the most part was uneventful. I was trying to follow along as the club championship was being playing in soggy conditions.

At a random stop in South Carolina as I stepped off the curb a big car pulled in. It was non other than John Maginnes. The radio host who also spoke and one of my charity breakfasts a few years back. I introduced him to the family and we had a few laughs. So random.

Upon arrival to my home away from home the kids jaws dropped. I am staying at my uncles beautiful lake house.

My daughter landed two large catfish while the rest of us kept checking our hooks to see if we still had bait. Later on we had a great dinner and learned a new marbles game similar to trouble. Monday my first treatment starts.

You know you have researched when...

I have ad windows now for diapers/incontinence products. The interweb knows everything.

I'm a cancer patient now

The patient part really hit me at my simulation appointment. I was sent to a room, to put on grippy socks and two gowns, one opens to the front, one to the back. I am then taken to a room to get my vitals taken, I am then put on a table and a custom cushion that is form fitted to me. Then the CT Scan, after several minutes they come in and mark me up with blue sharpie. Blue is important, because they have red and green sharpies as well, but they told me I must use blue. If it starts to rub off I am to reapply the marker. The sharpie also gets covered with stickers, to help keep it from rubbing off. Next some other guys get me, take my cushion, then use the cushion for the MRI portion of the appointment. So the pain part of my treatment is over, now it is the discomfort part.

Before all the scans start I get to drink water, I keep drinking water until I feel like I have to pee (for those who know me and play golf with me, they know this is every hole). And once I have to go, then I get to lay down on the tables. It was 35 minutes of laying there, and told not to think about it. Really I was back in the family station wagon, begging my father to stop so I could pee.

I get reminded daily now, since every time I get dressed I see the crosses and blue lines on my legs hips and belly to remind me it is real.

I have my start date, October 21st, with first treatment at 12:00. 28 treatments, 5 days a week, for 5 and a half weeks. That should have me finish the day before thanksgiving.

Airport Etiquette

1. When the plane arrives at the gate please remain seated until it is time for you to go.
      a. If you are in row 39 jumping up, opening the bin and pulling your luggage down, while shoving your behind in the person's face in the other aisle seat is not polite. You still are not getting off. any faster.
2. And if you are in the middle seat, you should not stand up and bend over in the aisle passenger's face
3.  If you are in row 40 and the aisle seat in row 39 has there turn to stand up and grab their luggage, it does not mean you step forward, to save you the extra 5 seconds in getting off the plane.
      a. because I'm going to pass you the second you get off the plane, you sandal wearing lady, you know who you are.
4. At the baggage claim, please stand back at least 10 feet instead of crowding the carousel. In that rare case when my bag is first off, I do not want to feel the need to push you out of the way, then whack you with my luggage as I get it off.

All three of these issues could be solved with common courtesy. Please apply these lessons to driving as well.

Ouch?

So last Friday the 4th I made my first pretreatment visit to Emory. This is there they place the carbon markers in my prostate (the crosshairs to make sure the proton gun is lined up correctly). These will be my little momentos I keep for the rest of my life, and they also the SpaceOAR gel with protects my rectum from getting hit with radiation. So it was a long day for a shortish procedure. Up at 3:00, well because why not sleep, flight at 6:04, then return flight at 9:45, but that late everything is late, so closed my eyes at 1:00, so a good 22 hour day trip to Atlanta.

My procedure was at 1:00, so I had some free time in Atlanta, in other words jump on Marta, head to facility and find ways to keep me occupied for several hours. So basically work a 5 to six block area around the center, throw in some 90 degree weather and some blue jeans, and well, not the excitement I was looking for.

After wasting enough time, I went in for the procedure. You get the quick run down that it will take about 20 minutes, the doctor is guided my ultrasound (not the baby watching kind, they want a closer look). Lidocaine is put on topically to help numb the area before the needles with more lidocaine is put in (think going to the dentist) you know, slight prick then heat, and this is done all the way to the prostate to numb the whole area. During the explanation I put together a play list of old school Dave Matthews, they said 20 minutes so I put about 40 minutes together. So as I got strapped in I put on the music, the topical gel takes about 15 minutes to work before the needles. I decided to start playing gin on my phone to further take my mind off of everything. The doctor comes in an here we go, ouch... okay that wasn't nice, ouch again... the best way to describe each needle (I lost count, maybe 5 or 6) was imagine someone putting a chisel right on your pelvic bone, then tapping it with a hammer, quick, but thank goodness no lingering pain at that spot, be he always found the next spot that wasn't number. So about 12 minutes in he puts the three carbon markers in, then the gel, then the thumbs up from his assistant. 15 minutes. Since I'm in the stirrups slightly inverted I have to wait another 15 minutes as they slowing get me vertical. In an effort to make me feel better the doctor wanted to know how I handled the procedure so well, he said he's done about 100 this year and this could have been the best. I like how they make me feel special. I will say if you go through this procedure spend time learning to meditate, or go floating a couple of times to learn how to get away.

They told me my blood pressure and heart rate went down as the procedure started, apparently that is the opposite of what happens (or so they made me think that). Either way, it sounds like I'm not other the poster boy for every treatment, but also for putting markers and SpaceOAR in my body.

So I head back on Monday to go through my simulation. This will take a few hours where I get to hang out with the physicists, get positioned on the table, and find out my schedule for my treatments.

The anxiety is real

It just is. I'm not sure if it is because of the fear of the unknown, my wanting to get started, leaving my family for days at a time. It has affected my work, I will juggle three of four things at once, unable to complete any of them, but then something clicks and I solve all three problems at once, almost cannot work fast enough. It's just the going back and forth. Anxiety, family, work, eat, anxiety, work...

I have never been the type of person to be given a round stick and square hole and just keep hammering at it until it gets in. I will play as many scenarios out in my head as possible and work it through that way, so when it is time to do it, I will exert the least amount of physical activity. Probably why I was a sprinter, and focused on streamlines, and stroke efficiency, in swimming. Except for the breathing part, I'm still awful at that. Okay, back to task, price increase coming so need to start working on that.