Some have asked so I will let you know that I will be heading down to Emory in January and March for check ups to make sure everything went well. I am still on Flomax, and still a little tired, tends to come in around lunch time.
Skip this part if you never swam, it's just swimmer talk: Over the last three weeks though, my 200 frees are getting faster. this week I was cruising 2:11's in the middle of a 2000 yard mountain set. I am still breathing more than normal, but everything is just getting better.
One side effect I have noticed is my hips feel tight/tender on the muscles that got zapped. It seems my legs wear out faster than the rest of my body. This week I have added strength training to the regiment. Still have my goal of making top 3 in the 50 at Masters Nationals this summer in Richmond VA. Just another goal to work towards.
As I write this my last treatment was 22 days ago. I could not be happier with the choice I made, we will be monitoring my PSA for the rest of my life, and watch for it to decrease. I have been in touch with Bob Marcini's daughter Deb a lot lately as they work to promote Bob's rerelease of his book, and who knows, maybe a documentary. More to come on that later. Charles told me to pay it forward, and I'm spreading the word every chance I get.
Thursday, December 19, 2019
Thursday, November 28, 2019
Ring the bell
Wednesday November 27th. Bell 1 Cancer 0.
I have now left my Emory family and am back in the care of my wife and kids. 28 treatments with Proton Therapy. I chose Emory because of the people in the picture. My life, my care was and is in their hands. They are truly amazing, at every level, on every floor. To all my brothers from the men's lounge we had some good laughs and some good times, I will continue to pray for you. To all the people who supported our family, from the little hugs, to the casseroles, the bottles of wine, the prayers, the trips, we love you all.
And my final message, please share with others my journey, that just because one doctor says one thing that is not necessarily your option, just because health insurance says no the first time does not mean you have to take that answer, and talk to other patients the ones with good experiences and the ones with bad, it is your health. And finally, get routine check ups.
I love you all.
I have now left my Emory family and am back in the care of my wife and kids. 28 treatments with Proton Therapy. I chose Emory because of the people in the picture. My life, my care was and is in their hands. They are truly amazing, at every level, on every floor. To all my brothers from the men's lounge we had some good laughs and some good times, I will continue to pray for you. To all the people who supported our family, from the little hugs, to the casseroles, the bottles of wine, the prayers, the trips, we love you all.
And my final message, please share with others my journey, that just because one doctor says one thing that is not necessarily your option, just because health insurance says no the first time does not mean you have to take that answer, and talk to other patients the ones with good experiences and the ones with bad, it is your health. And finally, get routine check ups.
I love you all.
Best part of your day
As family schedules get busier and busier, sometimes the family dinner does not happen as planned. When they do, one of the traditions we have is we go around the table and ask what was the favorite part of you day. Typical responses are, recess, getting out of school. For Aloma and I, it is typically 'right now' because the whole family is together and we are reconnecting. So Tuesday we had a big spaghetti dinner at my aunt and uncles.
And my favorite part of the day was seeing my family come up the escalator and the kids running to through the maze of people to come hug me.
And my favorite part of the day was seeing my family come up the escalator and the kids running to through the maze of people to come hug me.
You ever swim against a current
So I got to stay over my last weekend and join Dynamo for a Saturday morning swim practice. Oops, after the 4000+ set I would say I was toast, all done in a little over 1:15, who knew.
Well that was my last hurrah for swimming. On Monday I showed up and the pool was set up long course (50 meter pool) and this is when it felt like the current was against me in both directions. Fatigue had finally really kicked in. I got to the point in practice where a 100 was too much, so I would swim 100, sit 100, swim 100. I was watching the people I have practiced with and raced in practice cruising on by, my arms and legs flailing. Tuesday my last swim with my workout family was no good either, we were back to swimming yards and the turns helped some, but with 15 minutes to go the body said no more. So I took off my dynamo cap nodded goodbye and headed to my second to last treatment.
PS, Wife and kids fly in after my treatment.
Well that was my last hurrah for swimming. On Monday I showed up and the pool was set up long course (50 meter pool) and this is when it felt like the current was against me in both directions. Fatigue had finally really kicked in. I got to the point in practice where a 100 was too much, so I would swim 100, sit 100, swim 100. I was watching the people I have practiced with and raced in practice cruising on by, my arms and legs flailing. Tuesday my last swim with my workout family was no good either, we were back to swimming yards and the turns helped some, but with 15 minutes to go the body said no more. So I took off my dynamo cap nodded goodbye and headed to my second to last treatment.
PS, Wife and kids fly in after my treatment.
mustache season
I realize it has been a while since I posted. This weekend a mustache showed up and we had a great time. Great meaning we got our pants destroyed playing spades, but I redeemed myself on the golf course taking a few bucks from him. My buddy Chris Boswell drove down to hang out with me for a few days. I did send him my schedule, but it did not scare him away.
Wake up 4:30, on the road at 4:45, swim 5:45 - 7:00, cruise over to Emory, get Somoan Chill coffee from Thousand Islands coffee shop, head downstairs at 8:15, get zapped from 8;45 until 9:15 drive back to lake. around 10:30ish. eat, email, rest, eat dinner, climb in bed around 7:00 crazy, rinse and repeat. Not a problem he said, he would just elect to skip the 4:30 - 9:15 tasks, which I don't blame him. Boz, it means more than you know thank you.
PS, he is raising money for kids by growing a mustache, so please find a mustache in your area and support them.
Wake up 4:30, on the road at 4:45, swim 5:45 - 7:00, cruise over to Emory, get Somoan Chill coffee from Thousand Islands coffee shop, head downstairs at 8:15, get zapped from 8;45 until 9:15 drive back to lake. around 10:30ish. eat, email, rest, eat dinner, climb in bed around 7:00 crazy, rinse and repeat. Not a problem he said, he would just elect to skip the 4:30 - 9:15 tasks, which I don't blame him. Boz, it means more than you know thank you.
PS, he is raising money for kids by growing a mustache, so please find a mustache in your area and support them.
Tuesday, November 19, 2019
More symptoms
You did not expect me to just breeze through this unscathed? At the end of the day, it's still cancer, it's still radiation, and it is still a fight.
So with seven treatments to go symptoms that are arising, my hips are sore, sore enough that when it will wake me at night if I am on my side, the silhouettes of my prostate are getting darker on my sides. Like a mild tan, just need to put aquafore on it each day. The peeing is picking up again. I cannot make it all the way to anywhere without having to stop. Last night I pulled off the interstate, was told one mile to QuikTrip (Atlanta's Wawa), so into a business parking lot and let it go. So I am now going to double my dose of Flowmax. The latest symptom is some burning as I try to empty out. They put me on a drug called Phenazopyridine, once treatment stops, I should not have to take it anymore. The cool side effect of this drug is it turns my urine orange. And it will stain anything it gets on orange. And the good doctor told me of a patient who got upset with their doctor because it will cause an orange cloud if you pee in the pool. And the patient... well you get the picture.
Should make my last few practices down here interesting.
Only 7 left.
So with seven treatments to go symptoms that are arising, my hips are sore, sore enough that when it will wake me at night if I am on my side, the silhouettes of my prostate are getting darker on my sides. Like a mild tan, just need to put aquafore on it each day. The peeing is picking up again. I cannot make it all the way to anywhere without having to stop. Last night I pulled off the interstate, was told one mile to QuikTrip (Atlanta's Wawa), so into a business parking lot and let it go. So I am now going to double my dose of Flowmax. The latest symptom is some burning as I try to empty out. They put me on a drug called Phenazopyridine, once treatment stops, I should not have to take it anymore. The cool side effect of this drug is it turns my urine orange. And it will stain anything it gets on orange. And the good doctor told me of a patient who got upset with their doctor because it will cause an orange cloud if you pee in the pool. And the patient... well you get the picture.
Should make my last few practices down here interesting.
Only 7 left.
Timing
This past weekend I was able to spend some time at home and give my superstar wife time away with friends. And she deserves more. She is my rock.
Since she would not get in until 1:30 in the morning on a Monday, Emory moved my appointment for late in the day, which allowed me time to spend with her, get to the airport, fly down and get treated.
The timing of me getting to Emory could not have been better. As I walked in, who should be there with his son, but Charles, who opened my eyes to being an advocate for this whole process. He was there with his son, who I had the pleasure of meeting a few weeks earlier. Charles had two guests with him, and it was Bob Marcini and his daughter Deb. For those who have read all the posts you might remember Bob and the gentleman who wrote the book that opened my eyes to this amazing journey, the same book that Charles had overnighted to me. It is not often in life you get to shake the hand of someone who is so influential, but I got to. We all spent the next 15 minutes chatting and laughing. For you younger folk it was like meeting my favorite Instagram influencer. Home stretch is in sight.
21 down, 7 to go.
Since she would not get in until 1:30 in the morning on a Monday, Emory moved my appointment for late in the day, which allowed me time to spend with her, get to the airport, fly down and get treated.
The timing of me getting to Emory could not have been better. As I walked in, who should be there with his son, but Charles, who opened my eyes to being an advocate for this whole process. He was there with his son, who I had the pleasure of meeting a few weeks earlier. Charles had two guests with him, and it was Bob Marcini and his daughter Deb. For those who have read all the posts you might remember Bob and the gentleman who wrote the book that opened my eyes to this amazing journey, the same book that Charles had overnighted to me. It is not often in life you get to shake the hand of someone who is so influential, but I got to. We all spent the next 15 minutes chatting and laughing. For you younger folk it was like meeting my favorite Instagram influencer. Home stretch is in sight.
21 down, 7 to go.
Friday, November 15, 2019
Single digits
It’s been a rough week. Wednesday I slept 9 hours. Last night 9 1/2. Tuesday and Wednesday I didn’t leave Emory until 3ish. Which means driving home in Atlanta traffic. I think it took its toll.
I swam what amounted to 1000 yards on Thursday. Went to my 8:45 treatment then drove back to the lake to watch Cheers in my bed and attempt to email.
If I just had to drive or just had to get radiation I think I’d be sluggish. But man this is tiring
This morning I woke to my uncle making me breakfast. After missing dinner he wanted to make sure I get some fuel. It was awesome. I then went down the road to the pool and had a smooth swim. Main set was 2100 yards. So the sleep was needed.
I was able to say goodbye to my coach of the last month. She has a fun hard working group. She is off to Mayo Clinic for 10 days. She’s a breast cancer survivor and now is dealing with something else. God speed Maria.
19 down with 9 to go.
I swam what amounted to 1000 yards on Thursday. Went to my 8:45 treatment then drove back to the lake to watch Cheers in my bed and attempt to email.
If I just had to drive or just had to get radiation I think I’d be sluggish. But man this is tiring
This morning I woke to my uncle making me breakfast. After missing dinner he wanted to make sure I get some fuel. It was awesome. I then went down the road to the pool and had a smooth swim. Main set was 2100 yards. So the sleep was needed.
I was able to say goodbye to my coach of the last month. She has a fun hard working group. She is off to Mayo Clinic for 10 days. She’s a breast cancer survivor and now is dealing with something else. God speed Maria.
19 down with 9 to go.
Tuesday, November 12, 2019
A special guest
Over the weekend I was texting with a great friend from Austin, TX. By mid day Saturday he had purchased a ticket to come see me in Atlanta for 24 hours. We had not seen each other in about six years. We go back to the day we first met, within 18 hours we were partners in the greatest Multi-sport win in the history of the event. His Uber dropped him off at Emory about two minutes after I made it upstairs to leave. We cruised out to a cool golf course, and played with two local members. To show you what kind of guy he is, on the 18th hole they are cheering for him because he is down in the match, they are reading his putts, I'm like, but I'm the one with cancer, one guy was like, yeah I'm praying for you, but I'm cheering for him. Needless to say with multiple presses and birdies and what not, he wins the final hole to make the match all square. We then went to my aunt and uncles house for an awesome dinner then some rummicube. A quick six hour sleep session, and I was driving him to masters swim practice. I introduced him to the coach as a friend of mine, she looked at me and said, you have friends? About 2/3 through practice she was yelling at me, that I was now down to zero friends. The practice was a good one, he exclaimed that his practices are nothing like those, and everyone was hauling butt. A quick ride to Emory, a one block walk to get coffee in ice cold rain and wind, we headed downstairs. We said our goodbyes and he was gone. I love you all, not sure how many of you could run that triathalon like he did. I can not tell you how much we laughed, we smack talked, we remembered our youth. Bryan I could not be more proud and thankful for the time you took out of your schedule.
So the challenge has been laid, Golf, Rummicube, Swim, who is in?
So the challenge has been laid, Golf, Rummicube, Swim, who is in?
Thursday, November 7, 2019
thank you
It has been a few days since my last post. Life is moving along. So many of you have reached out to help, and we are so thankful. This is my third full week down here and they have only had to postpone one treatment. Tomorrow will be my 14th treatment, so half way.
The temporary side affects have started, I got my prescription for flowmax today, it does as it's name implies, I have had to start putting aquafore on my two radiation spots, I'm getting a mild sunburn on each hip, the fatigue has started some.
I am still able to swim in the mornings, which gets my day started off so well.
13 down and 15 to go.
The temporary side affects have started, I got my prescription for flowmax today, it does as it's name implies, I have had to start putting aquafore on my two radiation spots, I'm getting a mild sunburn on each hip, the fatigue has started some.
I am still able to swim in the mornings, which gets my day started off so well.
13 down and 15 to go.
Friday, November 1, 2019
New way to delay
So I had to pee. But that’s not good enough. So had to wait a few minutes. Then second scan says I have too much gas.
“Mr. Holsten, do you think you could relieve it in the table?”
“Nope.”
So after walking down the hall in my miniskirt gown a few burps. Back on the table and zap zap. As I write this I’m on the Marta. Guess who is farting up a storm on the Marta?
9 down 19 to go.
“Mr. Holsten, do you think you could relieve it in the table?”
“Nope.”
So after walking down the hall in my miniskirt gown a few burps. Back on the table and zap zap. As I write this I’m on the Marta. Guess who is farting up a storm on the Marta?
9 down 19 to go.
Thursday, October 31, 2019
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.
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.
Tuesday, October 29, 2019
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.
This means I get a Sunday make up date right before thanksgiving. Hopefully no more hold ups.
Friday, October 25, 2019
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.
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.
Thursday, October 24, 2019
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 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.
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.
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.
Wednesday, October 23, 2019
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.
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.
Wednesday, October 9, 2019
You know you have researched when...
I have ad windows now for diapers/incontinence products. The interweb knows everything.
Tuesday, October 8, 2019
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.
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.
Monday, October 7, 2019
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.
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.
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.
Wednesday, October 2, 2019
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.
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.
Tuesday, September 24, 2019
Approved!
So in eight days the procedure was approved. So next step is I head down on October 4th to get my SpaceOAR and my Fiducial Marker Seeds. The SpaceOAR is a barrier between my prostate and my rectum that blocks radiation, and the Seeds are the crosshairs so they can line up the Proton Gun and hit the prostate the same way every time.
I will then return on the 7th or 8th for my simulation, where we walk through the entire process, and I find out what time my treatments will be and for what duration (most likely 28 days)
So great news, and another step in getting cured.
I will then return on the 7th or 8th for my simulation, where we walk through the entire process, and I find out what time my treatments will be and for what duration (most likely 28 days)
So great news, and another step in getting cured.
Wednesday, September 18, 2019
Back From Emory
The people. I believe in their people. Every single one of them that I have met. The last time I was there I was numb, somewhat tunnel vision compared to this time. This time I saw the friends, the spouses waiting as their loved ones were getting treatment, there was some excitement, some hope, some were there because, well it's another day on their journey. Wordless communication is a powerful tool. The expression I see on some as I tell them my diagnosis the first time, the expressions I see on all of you, and it gives me strength, you all have to digest news, and some of you choose your words carefully and some of you react, like, kick it's ass. You are all with me on this journey and I am so thankful for all of you. All of you are helping in different ways, there is not one right way or wrong way. You are all special.
This post is all over the place, I know, all the people I have spoken with over the last few weeks at Emory came out of the woodworks to great me, they really are great people. I am in great hands. All the time, work, and research has been done, I have signed all the papers, now it is in the financial departments hands as they attack the insurance provider. With over twenty years of research, Proton therapy is still considered relatively new, prostate surgeries can be traced back to early 1900's, so health insurance likes to go with what it knows, I was told by my doctor that it was good that I had a surgery consult, and that I have met with other radiation oncologists, this helps in their arguments with the insurers.
Emory will keep me updated, and I know I will be reaching out for the updates as well.
And Hospital A did get their info to Emory. It took 6 business days to send notes from four visits. It wasn't even 4 paragraphs. All the hoops that have to jumped through are crazy, I know there is a reason, whether legal or company bureaucracy, but man is it crazy.
This post is all over the place, I know, all the people I have spoken with over the last few weeks at Emory came out of the woodworks to great me, they really are great people. I am in great hands. All the time, work, and research has been done, I have signed all the papers, now it is in the financial departments hands as they attack the insurance provider. With over twenty years of research, Proton therapy is still considered relatively new, prostate surgeries can be traced back to early 1900's, so health insurance likes to go with what it knows, I was told by my doctor that it was good that I had a surgery consult, and that I have met with other radiation oncologists, this helps in their arguments with the insurers.
Emory will keep me updated, and I know I will be reaching out for the updates as well.
And Hospital A did get their info to Emory. It took 6 business days to send notes from four visits. It wasn't even 4 paragraphs. All the hoops that have to jumped through are crazy, I know there is a reason, whether legal or company bureaucracy, but man is it crazy.
Monday, September 16, 2019
It is a mental game
The more time I'm given the more time I get to think. My older brother right after I told him my diagnosis said, you need to keep yourself busy, but if I stay busy, then I get tired... so keep staying busy and you won't notice you are tired.
For those who may also go through this I want you to know that the mind is a powerful thing. Negative thoughts arise, and try to grow. Last week I got the best news I could possibly get, which has lifted my spirits in my quiet time.
The two worst parts of my day used to be driving anywhere, and trying to go to sleep. I look back at all the research I have done. All the experts I have spoken to, all the patients I have spoken to, and I believe I have made the best decision for me moving forward with my treatment.
You will hear from others, that this is a very treatable cancer, the doctors have given me my scores and are confident that I am T1, Gleason 3+3, the MRI has come back beautiful. The mind will still work on you.
This may or may not be a pointless post. Just true stream of thought stuff today.
Not sure I've recommended this book yet so here it goes:
Why We Sleep: Unlocking the Power of Sleep and Dreams, By Matthew Walker
For those who may also go through this I want you to know that the mind is a powerful thing. Negative thoughts arise, and try to grow. Last week I got the best news I could possibly get, which has lifted my spirits in my quiet time.
The two worst parts of my day used to be driving anywhere, and trying to go to sleep. I look back at all the research I have done. All the experts I have spoken to, all the patients I have spoken to, and I believe I have made the best decision for me moving forward with my treatment.
You will hear from others, that this is a very treatable cancer, the doctors have given me my scores and are confident that I am T1, Gleason 3+3, the MRI has come back beautiful. The mind will still work on you.
This may or may not be a pointless post. Just true stream of thought stuff today.
Not sure I've recommended this book yet so here it goes:
Why We Sleep: Unlocking the Power of Sleep and Dreams, By Matthew Walker
Friday, September 13, 2019
Hospital A vs. Hospital B
So this past week I have spent time trying to get my medical records down to Emory. Hospital A, who originally diagnosed me, who was going to do the surgery, who said it would take 6 weeks to get and MRI and then another 10 days after that to get my results, is the one that uses a third party to manage my records. They are the ones that you need to wait 48 hours after a request, to check on the request. Well, it was 9/9/2019 when I made the request. It is now 9/13/2019 and I still have not gotten a straight answer. It has gotten to the point where they gave me a phone number today to call, and of course no one answers, no voicemail, no option 1 for an appointment, nothing, just a few rings then beeping.
Hospital B, the one that could get me in for my MRI 8 days after I requested. The one I called this past Wednesday for my results (4 days after my MRI) and they called back to give them to me. On Wednesday I requested that a CD be available for me to pick up by Monday, because I'm heading to Emory on Tuesday. I called today, Friday, to see if they were able to send the information. I could not reach the doctor, but the receptionist put me on hold, and went and found the CD. So I just ran there to pick it up, all this before noon.
I called Emory, said I've got the CD, want me to overnight it. They said, we actually just received the images and the pathology from Massey. So the Doctor already sent them. So from Wednesday afternoon, to Friday my records were all sent from Hospital B. It's been since Monday for Hospital A and I cannot get a single person on the phone who can help me out. Emory is calling them constantly to get my records as well.
Again and again, the lesson as the patient is you have to stay pushy. With hospital A I feel like Forrest Gump when he is on the bus that first day... "Seat's taken... Seat's taken..."
Hospital B, the one that could get me in for my MRI 8 days after I requested. The one I called this past Wednesday for my results (4 days after my MRI) and they called back to give them to me. On Wednesday I requested that a CD be available for me to pick up by Monday, because I'm heading to Emory on Tuesday. I called today, Friday, to see if they were able to send the information. I could not reach the doctor, but the receptionist put me on hold, and went and found the CD. So I just ran there to pick it up, all this before noon.
I called Emory, said I've got the CD, want me to overnight it. They said, we actually just received the images and the pathology from Massey. So the Doctor already sent them. So from Wednesday afternoon, to Friday my records were all sent from Hospital B. It's been since Monday for Hospital A and I cannot get a single person on the phone who can help me out. Emory is calling them constantly to get my records as well.
Again and again, the lesson as the patient is you have to stay pushy. With hospital A I feel like Forrest Gump when he is on the bus that first day... "Seat's taken... Seat's taken..."
Wednesday, September 11, 2019
48 hours means 48 hours?
So I called the urologist to release my records to Emory, so they have everything. I had already electronically requested the release on my patient portal. The urologist said they do not handle those and she was polite and forwarded me to the company that handles the requests.
So another lady answers the phone and I request that my records be released, and she stated, well you will have to wait 48 hours before we can honor the request. (speed of the medical community). The beauty of the patient portal is that is time stamps all actions. So as I stare at the screen it says I made the request at 9/9/2019 at 10:17 AM. It is 9/11/2019 at 9:08. So I tell her the time stamp on my computer, and she says, well then call back tomorrow and we will handle it, then I explain to her, that in an hour it will be 48 hours, she goes back to her form...well you have to wait 48 hours before we can honor the request, okay so I will call back at lunch... do whatever you want...
I have met and spoken to so many people during this process, and the amount bureaucracy and handcuffing is crazy. *The larger the institution the less people are empowered to assist.
*that is my opinion, do not take it as fact. You never know what kind of day people have had before you run interact with them. I'm a Redskins fan, so most Monday's are pretty rough.
So another lady answers the phone and I request that my records be released, and she stated, well you will have to wait 48 hours before we can honor the request. (speed of the medical community). The beauty of the patient portal is that is time stamps all actions. So as I stare at the screen it says I made the request at 9/9/2019 at 10:17 AM. It is 9/11/2019 at 9:08. So I tell her the time stamp on my computer, and she says, well then call back tomorrow and we will handle it, then I explain to her, that in an hour it will be 48 hours, she goes back to her form...well you have to wait 48 hours before we can honor the request, okay so I will call back at lunch... do whatever you want...
I have met and spoken to so many people during this process, and the amount bureaucracy and handcuffing is crazy. *The larger the institution the less people are empowered to assist.
*that is my opinion, do not take it as fact. You never know what kind of day people have had before you run interact with them. I'm a Redskins fan, so most Monday's are pretty rough.
"You have a beautiful MRI!" - says the doctor
Just received a call from the doctor who successfully got my MRI approved. Her first words were, I'm going to make your day. You have a beautiful MRI. It barely shows a Gleason six. There are no lesions, it has not spread to your lymph nodes.
I am almost in tears (without hormone therapy).
I am almost in tears (without hormone therapy).
Tuesday, September 10, 2019
Health Insurance?
Still waiting on the results from the MRI. I expect a few more days. In the mean time I spoke with Emory about scheduling. First I need to have a doctors consult, this is done in person, was hoping some skype action. Instead I am off to Atlanta to have my official first visit.
I spoke to them about how soon does the process start, and they said it depends primarily on Health Insurance. Some insurers take up to 28 days to approve the procedure, and Emory calls them daily to get the results.
They said my health insurer is the most popular for their current clients, and they take 7 to 14 days to get approval. So I asked, can we start that process sooner? So I was put on hold, and the answer is yes if the doctor agrees.
So this afternoon I was asked to start filling out paperwork to authorize Emory to request medical records from everyone I have seen so far. So I think the doctor said yes, so hopefully I'm 7 days ahead of schedule.
After approval then I have to get prepped. That requires SpaceOAR to be put in me: https://prostatecancernewstoday.com/spaceoar/ . During this procedure markers are also put in my prostate to make sure they line me up properly before they zap me. I call them crosshairs. And then I get my custom form fitted seat. Once all this is done, then another 14 days and I'm starting treatment. I've been told that on average people get 28 treatments. We will see what they dial up for me.
I spoke to them about how soon does the process start, and they said it depends primarily on Health Insurance. Some insurers take up to 28 days to approve the procedure, and Emory calls them daily to get the results.
They said my health insurer is the most popular for their current clients, and they take 7 to 14 days to get approval. So I asked, can we start that process sooner? So I was put on hold, and the answer is yes if the doctor agrees.
So this afternoon I was asked to start filling out paperwork to authorize Emory to request medical records from everyone I have seen so far. So I think the doctor said yes, so hopefully I'm 7 days ahead of schedule.
After approval then I have to get prepped. That requires SpaceOAR to be put in me: https://prostatecancernewstoday.com/spaceoar/ . During this procedure markers are also put in my prostate to make sure they line me up properly before they zap me. I call them crosshairs. And then I get my custom form fitted seat. Once all this is done, then another 14 days and I'm starting treatment. I've been told that on average people get 28 treatments. We will see what they dial up for me.
Monday, September 9, 2019
My escape
Sleeping and driving have been the most mentally taxing times for me. That is when my mind has been the most active, without outside stimulus, even with the windows down and the music blaring while driving.
For me my escape has been golf with friends, and it has been friendly competition golf on the weekends. A psychiatrist would better analyze what is going on. I'm just a patient who has experienced a resurgence in my golf.
Since I was diagnosed this is what I have shot.
Our Member-Member tourney is around the corner and I dropped out after my diagnosis, but as Club Pro Guy would say I am trending in the wrong direction. I am not managing my handicap properly.
I have also started riding in a cart. Spending more quality time with my playing partners, where I used to walk and you could have a lot of alone time during the round walking, I'm trying to avoid that now.
I'm going to see if there are studies out there, where people started to excel in some of their pursuits in similar situations. Lance Armstrong comes to mind (did he use performance enhancers? yes, but most were). It still takes the mental fortitude be successful, that many times, no matter what you are taking.
Mario Lemieux is someone else.
For me my escape has been golf with friends, and it has been friendly competition golf on the weekends. A psychiatrist would better analyze what is going on. I'm just a patient who has experienced a resurgence in my golf.
Since I was diagnosed this is what I have shot.
| H | 9/7/19 | 69 | 75.1/140 | -4.9 | Hermitage Country Club Sabot C |
| H | 8/31/19 | 71 | 72.5/137 | -1.2 | Hermitage Country Club Sabot C |
| H | 8/24/19 | 74 | 72.5/137 | 1.2 | Hermitage Country Club Sabot C |
| H | 8/17/19 | 70 | 72.5/137 | -2.1 | Hermitage Country Club Sabot C |
| H | 8/11/19 | 77 | 72.5/137 | 3.7 | Hermitage Country Club Sabot C |
| A | 8/7/19 | 79 | 73.9/148 | 3.9 | Kiawah Island Golf Resort Ocea |
| A | 8/4/19 | 70 | 70.5/133 | -0.4 | Kiawah Island Golf Resort Ospr |
Our Member-Member tourney is around the corner and I dropped out after my diagnosis, but as Club Pro Guy would say I am trending in the wrong direction. I am not managing my handicap properly.
I have also started riding in a cart. Spending more quality time with my playing partners, where I used to walk and you could have a lot of alone time during the round walking, I'm trying to avoid that now.
I'm going to see if there are studies out there, where people started to excel in some of their pursuits in similar situations. Lance Armstrong comes to mind (did he use performance enhancers? yes, but most were). It still takes the mental fortitude be successful, that many times, no matter what you are taking.
Mario Lemieux is someone else.
Sleep is getting better
The first six weeks after I first learned of an elevated PSA and after my diagnosis I was probably getting 3 to 4 hours of sleep. The last three weeks I can say I'm sleeping much better. I've had a few nights were I was getting a solid 7 1/2 hours.
The nights I sleep the best are the days a I get a work out in. With all the appointments, the lack of sleep, the vacation, the travel, my workout schedule has suffered. It has been sporadic at best. Now that the school year is back in session, my masters swimming group is back in the water on a regular schedule I look forward to having some more normalcy with better sleep.
The nights I sleep the best are the days a I get a work out in. With all the appointments, the lack of sleep, the vacation, the travel, my workout schedule has suffered. It has been sporadic at best. Now that the school year is back in session, my masters swimming group is back in the water on a regular schedule I look forward to having some more normalcy with better sleep.
But wait, there is more
So I arrive at my MRI appointment at 9:05 (was supposed to be there at 9:15, I blame playing sports as anxiety on trying to never be late for an appointment. I know it drives my kids and wife crazy).
Last name please...what do you mean, you do not have my chart, okay, come around the desk. Um yeah your appointment was cancelled yesterday. I know that, and I pulled out my phone, and I was like, yes and look at 5:21 someone called from this number and said it was back on. Do you know the nurse who called? Nope.
So all the issues I had the last two days I thought were behind me (potential pun coming). You see before an multiparametric MRI you have to stop eating 4 hours before the procedure and only have clear liquids (liquids you can read a newspaper through). and 3 hours before you have to use an enema (see issues behind me.. get it). So imagine being hangry, full of clear liquid with a cancerous prostate, and recently enemanized (new word that I created). So um, yeah, I want to be upset because I'm hungry, but I need to pee every couple of minutes, and don't get me started if I feel like I have to fart.
Okay, went back to the waiting room. 15 minutes later and another nurse came in and they spoke. We are going to get you taken care of. You will be pushed back a little, I'm like, not a problem.
So 45 minutes late I get my MRI, 40 minutes of electronic jack hammering as you lay still in a tight fitting tube. The first 30 minutes were great, you do get head phones and music, but I couldn't hear a lyric. For anyone who has been floating you know the joys of the floating meditation. Well that's were I went, focused on breathing. It went smoothly. The last 10 minutes they pumped in some dye. Kind of a cooling heating feeling (icy hot patch) on my arm, then I can taste the pole from a Christmas Story for a minute or two.
Then the only song I could hear at the end, Gun's and Rose's version of Knocking on Heavens door.
I was in the car by 11:20 and quick stop at home, then off to the golf course.
Last name please...what do you mean, you do not have my chart, okay, come around the desk. Um yeah your appointment was cancelled yesterday. I know that, and I pulled out my phone, and I was like, yes and look at 5:21 someone called from this number and said it was back on. Do you know the nurse who called? Nope.
So all the issues I had the last two days I thought were behind me (potential pun coming). You see before an multiparametric MRI you have to stop eating 4 hours before the procedure and only have clear liquids (liquids you can read a newspaper through). and 3 hours before you have to use an enema (see issues behind me.. get it). So imagine being hangry, full of clear liquid with a cancerous prostate, and recently enemanized (new word that I created). So um, yeah, I want to be upset because I'm hungry, but I need to pee every couple of minutes, and don't get me started if I feel like I have to fart.
Okay, went back to the waiting room. 15 minutes later and another nurse came in and they spoke. We are going to get you taken care of. You will be pushed back a little, I'm like, not a problem.
So 45 minutes late I get my MRI, 40 minutes of electronic jack hammering as you lay still in a tight fitting tube. The first 30 minutes were great, you do get head phones and music, but I couldn't hear a lyric. For anyone who has been floating you know the joys of the floating meditation. Well that's were I went, focused on breathing. It went smoothly. The last 10 minutes they pumped in some dye. Kind of a cooling heating feeling (icy hot patch) on my arm, then I can taste the pole from a Christmas Story for a minute or two.
Then the only song I could hear at the end, Gun's and Rose's version of Knocking on Heavens door.
I was in the car by 11:20 and quick stop at home, then off to the golf course.
Appeal Succesful
Thursday Sept 5th around 2:30 I was denied my MRI by my Health Insurer. So on Thursday I was on the phone with my healthcare agent, who said, get the doctor to do a peer to peer with the company, my heath insurer uses to deny claims (yep, they can't do it themselves so they pay another company to deny coverage for them).
So I made two calls to my doctor letting them know that family history needs to be discussed during the peer to peer.
Friday AM, no word yet. I was worried, because I was still scheduled for the MRI, but the health insurer was not going to pay. So at 8:15 I'm back on the phone with the doctor, apparently he was in an educational meeting. So I then called my agent again, he was going to start up work up a case, but said, he really doesn't have much power and not to expect anything by the end of the day. I called the MRI location at 9:00 (more than 24 hours ahead of appointment). They gave me until 10:00 PM to cancel.
As you can imagine, all morning the anxiety began to build. Eventually at 2:45 the MRI location called and said they were canceling my MRI. What the... I thought I had until 10:00. So back on the phone with the doctors office, yadda yadda yadda, they are canceling. The nurse was helpful, put me on hold to see what was causing the delay. The nurse spoke with the doctor and the doctors resident, they were back on it. So more waiting. At 5:02 I called the doctor, no one picked up. Yeah, I was not happy. Just slumped over, loss of appetite sort of feeling. I got in the car and started driving home. I put the windows down and tried to turn the music up too loud as I was driving through the fan. I made my usual turn onto grove and the phone range at 5:18. Hello Mr. Holsten, this is the doctor, I'm doing my residency with your doctor, I just got off the phone with the company that your health insurer uses to deny claims. After speaking with them, you are now approved... something something something, you are a miracle woman, thank you. 5:21 the MRI location called to let me know I'm back on the schedule.
Happy days are here again.
So I made two calls to my doctor letting them know that family history needs to be discussed during the peer to peer.
Friday AM, no word yet. I was worried, because I was still scheduled for the MRI, but the health insurer was not going to pay. So at 8:15 I'm back on the phone with the doctor, apparently he was in an educational meeting. So I then called my agent again, he was going to start up work up a case, but said, he really doesn't have much power and not to expect anything by the end of the day. I called the MRI location at 9:00 (more than 24 hours ahead of appointment). They gave me until 10:00 PM to cancel.
As you can imagine, all morning the anxiety began to build. Eventually at 2:45 the MRI location called and said they were canceling my MRI. What the... I thought I had until 10:00. So back on the phone with the doctors office, yadda yadda yadda, they are canceling. The nurse was helpful, put me on hold to see what was causing the delay. The nurse spoke with the doctor and the doctors resident, they were back on it. So more waiting. At 5:02 I called the doctor, no one picked up. Yeah, I was not happy. Just slumped over, loss of appetite sort of feeling. I got in the car and started driving home. I put the windows down and tried to turn the music up too loud as I was driving through the fan. I made my usual turn onto grove and the phone range at 5:18. Hello Mr. Holsten, this is the doctor, I'm doing my residency with your doctor, I just got off the phone with the company that your health insurer uses to deny claims. After speaking with them, you are now approved... something something something, you are a miracle woman, thank you. 5:21 the MRI location called to let me know I'm back on the schedule.
Happy days are here again.
Thursday, September 5, 2019
Denied!
From what I have read, this is normal.
So, my MRI was set up for this weekend Sept 7th. The go between (third party) that gets the requests from the doctors, reviewed my numbers and said I did not meet the criteria for the procedure. They did this on the 3rd, and notified me on the 5th, as well as notified my doctor via fax.
They stated my numbers were too low for them to approve a procedure. So now my doctor has to go back and state I have a family history.
So a company, that I am not a customer of, runs blocker between my doctor and them, runs blocker between me. Takes all power away from me to appeal.
Step one, call my health insurance agent.
Step two, call my doctor, -> Doctor is looking for the fax.
So back into attack mode.
So, my MRI was set up for this weekend Sept 7th. The go between (third party) that gets the requests from the doctors, reviewed my numbers and said I did not meet the criteria for the procedure. They did this on the 3rd, and notified me on the 5th, as well as notified my doctor via fax.
They stated my numbers were too low for them to approve a procedure. So now my doctor has to go back and state I have a family history.
So a company, that I am not a customer of, runs blocker between my doctor and them, runs blocker between me. Takes all power away from me to appeal.
Step one, call my health insurance agent.
Step two, call my doctor, -> Doctor is looking for the fax.
So back into attack mode.
Wednesday, September 4, 2019
Supposed to have had surgery yesterday
The day came and went, what was scheduled to be my surgery date. Assuming everything had gone well I'd be at home now, post surgery with my catheter and who knows what medication. I would be returning to the doctor next Tuesday, have a void test, that is see if I could empty my bladder. If I could then I would return home without the catheter. I'd be on all sorts of medication. Probably very uncomfortable, and unable to help anyone with anything. I've had enough surgeries to know that there is a road to recovery, that there is a silver lining the next day. It was good to know that tomorrow I would be one step closer than today.
Sleep is still an issue. Amazing how late I can stay up just going over everything, every step, whether it is work or life, and then wake up too early to start thinking again. I'm hoping regular exercise will help with the sleep. The last week and a half have been quite busy with no exercise. Also the kids are back in school and the schedule seems to be getting a little more regular.
Finished my pre MRI consult today. 40 minutes in a tube with loud banging. That about sums up an MRI. Watch this be the time when I fall asleep. Jerking around like I'm trying to do a breastroke practice in my sleep.
Sleep is still an issue. Amazing how late I can stay up just going over everything, every step, whether it is work or life, and then wake up too early to start thinking again. I'm hoping regular exercise will help with the sleep. The last week and a half have been quite busy with no exercise. Also the kids are back in school and the schedule seems to be getting a little more regular.
Finished my pre MRI consult today. 40 minutes in a tube with loud banging. That about sums up an MRI. Watch this be the time when I fall asleep. Jerking around like I'm trying to do a breastroke practice in my sleep.
Tuesday, September 3, 2019
Met my third Radiation Oncologist and I said pushy
Friday before labor day and I met with another Radiation Oncologist. And wow was he awesome. For over an hour and a half we talked. He wanted to know what I had learned so far, so this was not a lecture. We went through every procedure, past and present, who I was looking at. We covered a lot of ground, and on more than one occasion he stated he thought I was doing the right thing, at 47, going the proton route, even though he does not use that technology. At no time did I feel like I was a number to him, I was a patient, and he was able to give me all the time I needed.
So I learned a new procedure. He does high dose brachy therapy. An outpatient procedure with higher radiation seeds, over two treatments. It is still an invasive procedure with needles (catheters) inserted in your prostate, with computer calculations done by location to determine how long the seeds remain in your prostate. Procedure takes about four hours, you are sedated, and most people are back at work the next day, feeling as though they got a few shots the day before. He is currently performing this procedure for people 50 and over.
And I stayed pushy, he helped me schedule an MRI for the following weekend, so I will not have to make a trip to Atlanta to get it done, and I don't have to wait six weeks.
So I learned a new procedure. He does high dose brachy therapy. An outpatient procedure with higher radiation seeds, over two treatments. It is still an invasive procedure with needles (catheters) inserted in your prostate, with computer calculations done by location to determine how long the seeds remain in your prostate. Procedure takes about four hours, you are sedated, and most people are back at work the next day, feeling as though they got a few shots the day before. He is currently performing this procedure for people 50 and over.
And I stayed pushy, he helped me schedule an MRI for the following weekend, so I will not have to make a trip to Atlanta to get it done, and I don't have to wait six weeks.
Stay pushy my friends
Trying to go through my urologist to get an MRI, I was pushed out 6 weeks, then another 10 days before I meet with the doctor to go over the results, that's going to get me into mid October before I can start meeting with Emory to start.
So I reached out to Emory, they started working on getting me a time the Saturday after Labor Day, so 9 days later.
Then I reached out to my Primary Care physician because he had to recommend the MRI down at Emory, I also had him reach out to my urologist too.
What I am learning from this process is you need to be vigilant. It's your body, there are other options. This is not the DMV.
Friday, August 30, 2019
She deserves her own post
My wife of over 15 years has been a rock beside me through this whole process. There is no where to start or begin to tell you how important she is through this process, she was ready to be my nurse post surgery, she is ready to support me in my decisions. She has traveled with me from treatment center to treatment center. She asks the good questions!
The speed of the medical community
Thursday August 29th. Trying to get a Multiparametric MRI scheduled through my urologist, gave me six week wait time, then ten days before they will be able to discuss it, so two more months wait time, um yeah no.
Reached out to Emory, and they are waiting on a fax from my doctor and they will try to do the MRI next week.
After talking with Georgetown today, who limit prostate patients to Medicare/Tricare, I have made my decision to use Emory as my treatment center.
Emory Proton Therapy Center
August 27th, off to Atlanta to view that facility. Wow, Lindy, Nancy and Charles were great. Charles arranged for the meeting at the facility. I was given a tour, and this facility just opened in December, so they have all the latest up to date equipment. They use pencil beam proton treatment, which controls the protons at the end with magnetic aperture (magnets are used during the entire runway for the protons) directing it to the different rooms.
After the tour, we were able to have a meeting with the director of the facility, one of the radiation oncologists, the head physicists and what I would call a controller, ie the guy who directs the protons for my specific treatment.
They gave a great presentation and diagrams of the difference between proton and IMRT photo treatments. Amazing.
Emory also uses formed fitted seat/bags to make sure you are properly lined up for treatment. If I choose Emory, I hope to ring the bell after my last treatment.
Hampton Proton Therapy Center
August 23rd, off to Hampton today. Hampton was great. Got to see the entire facility, the Radiation oncologist gave me a diagnosis of T1N1M0 or low risk. He has had several with my diagnosis, stand up and say they will be back in a year. With my family history, though, it might be best to start sooner rather than later.
I will have an MRI. He explained the procedure, they would insert the SpaceOar gel inbetween my prostate and rectum (they have been using it for four years). This product helps block the radiation from disturbing my rectum. I will have four seeds/markers inserted into my prostate, they will be the crosshairs that will enable them to line up the proton gun the same before every treatment. And I’ll get three tiny dot tatoos, the nurse who was showing us around showed us hers, since she was instructing people to get them she got one to see if it hurt, and how big it is. If she hadn’t told me I would not have known she had one on her hand.
I need to drink X amount of water 30 minutes before procedure to move my bladder out of the way.
Side affects will be irritated urethra (it gets sunburned by the radiation) 20% experience fatigue. Years later there could be rectal blood, but it is becoming more and more rare, and they are seeing it pop up with people on blood thinners.*
One of the nurses took us on a tour, showed us the room and the large brass fittings that will be customized for me. I was very happy with the facility, and the people I met.
words of wisdom: "Get friends to drive you to treatment, not because you are tired or sick, but because it will help pass the time and they will learn about awesome procedures or cures there are."
*I have no facts to support this claim, just general conversation with the Doctor.
Speak to people, listen, gather information
Wednesday the 21st of August.
A quote I came across today, “In summary, proton therapy is just as effective as photon (traditional) radiation therapy, but the question remains as to whether the increased cost of proton therapy is worth the anticipated lessening of side effects.” – breast360.org Radiation Therapy: Photons vs. Protons
Cool day, got to speak with Bob Marckini for 50 minutes. He gave me a few recommendations for questions. Is providing me more research information, and was just great. Sent a list of 150 patients who are willing to talk about their experience.
One suggestion was to make sure I get a second opinion on my pathology, that really determines what direction my treatment should go. If there is a discrepancy in my Pathology, send it to Epstein at Johns Hopkins, he is the expert on Prostate pathology.
That PSA increase velocity can be more important than what the value is.
Ultrasound biopsys is such old technology, there is newer MRI Multiparametric procedure is much more advanced. Helps you better pinpoint where to biopsy before you go in.
Words of wisdom, "Get treated and the best place for you, not what’s most convenient!"
With every peak, there comes a valley
Tuesday the 20th I spoke to the nurse of a radiology oncologist at a local hospital, told her I was looking meet the doctor for another opinion, told her that I wanted to do Proton therapy, and she said, we don’t do that here, why would I want to do that, there isn’t any research on that procedure. I asked, what do you do there and she said radiation and surgery, I asked if it was IMRT, and she said yes.
She also asked if I had had an MRI yet, or bone scan on my pelvis, I said no, so I need to get those done, sooner rather than later. Bob’s book does insist that I do that. Anxiety definitely elevated today. As I spoke to her more I talked about the proton facilities I was going to visit, she was surprised there were those facilities, I told her there were 22 around the country, she was surprised, had no idea there were that many. (side note, there are more than 22 and more being built).
My wife and I also attended the end of the Surgery pre op class with some other couples. Listening to post op side affects is interesting. The two ladies were great, we were late, because of me. I swore the seminar started at 4:00, my wife said 3:00. She was right, I was wrong. It will happen again. The two ladies who gave the seminar stayed after and spoke with us, one was somewhat familiar with Proton therapy and seemed to dismiss it a little.
You can beat Prostate Cancer, And you don’t need surgery to do it, by Robert Marckini
You can beat Prostate Cancer, And you don’t need surgery to do it, by Robert Marckini. Buy this book, read this book, it will take you 2 to 3 hours. (Bob is working on an updated version). It will just open your eyes to get yourself the best care for you.
Sunday morning I woke up and the book was in my nightstand, almost calling my name, like the heart under the floor boards in tell tale heart. I spoke with my wife and said I need to read it, so I took it to the office at work, where there were no distractions.
The first third of the book brought back all my anxieties, it was awful, why would someone recommend this book, but I was given strict instructions, to read it page by page, chapter by chapter and call back after I had finished the book. Half way through the book I was seeing the light, I was ready to start the process. The second half of the book is informative, it helps you understand there may be a fight coming to get help (the book is over ten years old, so I think there is more acceptance of this procedure now than before) This is the point where you are thankful there are rich people willing to spend their own money on experimental procedures, so they can eventually become available to us, and health care providers will approve them.
Monday August 19th has been crazy. So far I have been in contact with Charles, my uncle, another uncle who is a retired radiologist, Bob Marckini, the author, and a physicist who help build the proton facility at Loma Linda (this is where Charles and Bob Marckini had their procedures done). I’m waiting to hear back from a radiologist from UVa who uses, IMRT radiation and a product called SpaceOAR (Organs at Risk) gel which helps protect the rectum from radiation, and through all my family’s relationship at Massey I have a connection there and waiting to hear back from them as well. Today could be the most optimistic I’ve been. I’m also waiting to hear back from a patient from the Hampton Proton Therapy Center, who’s son has kids in school with my kids.
The world keeps shrinking. Charles and I spoke and he will be happy to meet with me in Atlanta next week, along with my uncle and my wife to view the atlanta facility. There really is a brotherhood/fraternity.
Ch ch changes?
I did reach out to the Hampton Roads proton center just after noon, told them I was scheduled for a radical prostectamy Sept 3rd. And that made the receptionist jump. She said someone will definitely get back with me Monday, if not later that Friday. Well someone called, set me up Friday afternoon and said a scheduler would call as well, and an hour later the scheduler called. I had an appointment for next Friday to learn more.
So yes, Friday night I took Xanax, laid on the couch for an hour or so, then went up to bed at 9:00 (one thing I have learn over the last two years from my best friend is how important sleep is, to letting your body fight anything. You need 8 hours period, don’t believe the hype that you can get away with less) I woke up the next morning actually feeling better. I was off to the golf course, side note, had an awesome time with my friends, had an eagle, and four birdies, shot 70 and lost money… yep crazy. So when I got home, there at the front door was the book, 28 hours after speaking to Charles there it was, this man was serious. I hid the book. I had just played some awesome golf and was in a good mood for the first time in weeks.
STOP!
Friday morning August 16th my uncle calls, says he has an acquaintance of his wife, Charles. (his wife is a fundraiser) My uncle lives in Atlanta, and a few years earlier I told him he missed most of my life, I’m sad I made that comment, I don’t remember making it, but it stuck with him. He had his reasons, and I completely understand his reasons. So I don’t blame him. So he calls, and when you go through stuff like this everyone knows somebody/has a friend who has been through this and they know better. My uncle says you need to call Charles, and when you are done talking you need to call me back. I missed 35 years of your life, I won’t miss anymore, I am with you. If you don’t call him I am getting on a plane and flying up there and I will drive you down to Hampton to see the doctors myself. Call him when you hang up, and when you are done call me back.
I was freaking out, it was like I had just been told I had cancer again… Uncle, I had decided on surgery, I had done what I thought was research, and knew the risks, so you are telling me there is another solution?
So I called Charles. He answered on the 3rd or 4th ring. He was expecting my call. I gave my stats 47, third generation, psa 3.9, gleason 3+3=6, 6 out of 13 biopys… that took about 45 seconds and then he started. You need to educate yourself more, prostate cancer is slow growth, talk to doctors, but more importantly talk to patients, do you want to wear a diaper the rest of your life? Do you want to impotent? There is a better procedure, and I just want you to explore it more. I had already decided on surgery, and I gave him, but I’m young, athletic, I’m the poster boy for the surgery (this term will come back to bite me in the ass a few days later) Lets just say for 30 minutes he made his case for me to spend a little more time and educate myself. He finished by saying he was going to send me a book. That I should read it and call him back. To text him my address, he would fed ex it and I’d probably get in on Monday, I could finish it in an evening. So after the call I called my uncle back, he continued to pressure me at the same time let me know that he is there for me during the whole process.
Side note, on Thursday my mom told him not to call me. He said, to hell with that, I’m calling him.
So by noon on Friday, I had spoken to my uncle twice, and Charles once. The rest of the day sucked, so much anxiety, oh and in the meantime I was working on two huge deals for our family company. How was I going to concentrate?
Surgery Time
So after meeting with the surgeon he had a date, Sept 3rd available, great, 6 weeks after my biopy’s the minimum wait time. So on Tuesday, I know in 3 weeks I’ll have the cancer out of me and onto the healing process. Before the surgery I will have to go to classes. One is an educational class that talks about the risks and side affects. 1. Loss of bladder control, I knew this and had accepted this could go on for a few weeks after surgery. 2. ED, yet, erectile dysfunction. But there are pills and shots (shots is what male adult actors use so they can work those long hours on sets). 3. Infection (always a risk with a surgery). 4. Blood clots… one of my past surgeries I had 4 PE’s, but they know my history, and take all the precautions, compression leggings, get me walking the day of the procedure, blood thinners. 5. Catheter for a week.
To me, I feel I could handle all of those (don’t want to do the PE thing again, but I know the symptoms now, and they have all the answers.) So by Thursday I had prepared my self for what was to come. I had come to peace, and honestly couldn’t wait to get started so I could start recovery.
I believe you...let's get it out.
Did I pee a lot? Yes, and I have my whole life. College swim meets I bet you I’d pee 7 or 8 times in a 3 hour period. During some of my best rounds of golf, I would pee almost every hole. Sex life, libido, not a problem. Because my father had it I was getting regular DRE’s (DRE's think of Fletch, "Using the whole fist their doc?") since I was 35. So now that I had it I’m the type to get the process underway and get it taken care of. I have seen too many people hold off treatment, whether it’s a knee replacement, or hip replacement, and by the time the get the procedure done, they have gotten so much older and weaker the recovery is that much harder. I’ve had enough surgeries to know there are always complications, there is always rehab, that is just the nature of the cure.
Thursday, August 29, 2019
Diagnosis
So after the biopsy’s I had to wait 8 days to go over them, and the doctor was wedging me in at 10:10 on August 1st to let me know the results. Um, yeah, sleep was hard. So two days before the appointment the time was changed to 11:00, why? I knew they were busy, my wife on the otherhand said uh oh, he wants time to speak with you, and yes, she was right. At 11:00 on August 1st I got the news that I had prostate cancer. That 6 of the 13 samples came back Gleason 3+3=6, grade 1.
I mentally went into a tunnel, my wife started asking the questions. She would be a better resource on what the doctor said, I thought I had done my research and I was going to demand robotic surgery to get it out so I could get on with my life. It was Thursday and we were scheduled to on a family vacation on Saturday. I told the doc, can we schedule next week, he said no, your rectum has to heal from the biopsy’s and the surgeon can’t meet with you until Tuesday August 13th after vacation. So off we went. At no point during this have I been in denial. I knew I would get it eventually, but not at 47.
As I look back, I bet I’ve had it for at least a year. Did I have a couple night sweats? Yes, but those were also the nights when the bourbon was delicious and I needed another, or the red wine was extra tasty and the wife and I were just having too much fun. After the appointment I started making the phone calls, my mother, my brothers, my close friends. I went to get lunch, did the Panera drive thru at Regency Square, got my food, and pulled into two or three empty parking spots as I’m making the phone calls, an old college roommate facetimed me, out of the blue, he was on a hike with his son, it was so bizarre. I did not have what it took to tell him at that time, my head was swirling.
Initial testing
On July 3rd, 2019 my doctor called the day after my annual exam and said my PSA was at 3.9, a spike since two years prior. My DRE was negative. I was given choices, 1. It could be an infection and I could go on antibiotics for a month, then retest, or because I’m active (I was currently swimming with a college swim team this summer 3 days a week, for 2 hours at a time) the antibiotic could weaken my tendons, 2. my father had passed away from Prostate cancer 5 years before after a 14 year battle, it was decided that I see a urologist. I was told to schedule an appointment with the Urologist and tell them I need to see someone soon because of “an elevated PSA”. So July 11th I met my Urologist. Once again I was given some options, wait, or we could schedule a biopsy. If you go with local numbing you can get it on schedule quicker, if you want to be put under, that will take longer to schedule. I chose the more aggressive choice, lets go local. So on July 24th, I found myself in a loose fitting sheet with no back, laying on my left side, while two nurses kept me laughing and one doctor shot what felt like rubber bands into my rectum… 13 times. During the process we talked about Dave Matthews, the doctor had just attended his first one, of course I had to tell him in the early 90’s while living in Richmond I used to go see him most Tuesday nights at Trak’s in Charlottesville, then see him again Wednesday nights in the flood zone. The summer of 93 I may have seen him 10 or twelve times over a two month period, and I hadn’t seen him live since New Years in Hampton in ’96. So after 10 to 15 minutes of mild grade school rubber band torture the waiting game began. And this is the when the anxiety started. My older brother said, just stay busy so you do not think about. Easy for him to say, for anyone who knows me my mind is always racing and going to strange and different places. For a good alright run of the mill time, sit in a room with me during a brainstorming session.
Why write this?
It’s easy to begin. 47 years of age, very active, husband, father, third generation prostate cancer patient. I’m writing this because in my research you just do not find stories of people in their 40’s facing this journey. Everyone who is “young” are in their upper 50’s and early 60’s. Or if they are in their 40’s maybe they are private people and just want to get on with their lives. Since I have it, it means my brothers are five times more likely to get it that other men, and my two sons now have an increased chance.
I'm writing this because, the more you talk about it, the more you learn you are not alone, and you do not have to be alone. Everyone is an expert, am I right? So many doors have opened up during my experience so far.
I writing this as the patient. I am not an expert by any means. If there is one thing you get out of this blog, it's that you have options, explore those options, push the envelope in researching to determine what is truly best for you.
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