It never stops

 Happy to announce this week I'm still doing well. 1.0 on the PSA. Also want you all to know that you can share my story. I get to talk to people every now and then about my journey. There are options, it's not about being tough, it's about doing what's best for your quality of life. Mine is amazing.

Keep getting check ups and keeps spreading the word.

Has it been a fast 5 years

 Dr. Barnes came in this morning to my room and said, great news. Your numbers are still looking great. 

My PSA was .999

Some would say I'm prostate cancer free. It feels weird to say it, do not want to Jinx anything. I do not believe this journey is over, I'm sure at my 9 month appointment I will be nervous, I know I'll question every feeling I have in my body, whether it is sweats, tenderness, over peeing, under peeing. 

Stay on top of your PSA, its so easy. 

I'm smiling a little bit bigger today.

All I need to say is...

 0.97

Latest PSA

1.07, boom. Still crusing along.

Three years after Proton Therapy and I did get an MRI

my PSA jumped from 1.0 to 1.6 in 6 months so we decided to take an antibiotic, that lowered my PSA down to .9. We also did a pelvic MRI with contrast and the results were great. No cancer in the prostate, no cancer in the pelvic bone marrow, and no swell in the plevic lymph nodes. Gonna head back in 4 months for my next MRI.

It's been a year? And a PSA bump

So in the last year post treatment life has looked great. In April my psa was 1.0. This october at my regualar doctors physical it was 1.2, two weeks later at my semi annual appointment it was 1.6. That made every stop. Doctor asked if I was peeing more often, didn't think so, was it painful when I urinated and I said I did not think so, he thought it might be prostitis that is causing my psa to rise, I asked if Covid could cause it, he said he didn't think so (google covid and PSA, you will find that a case study of 91 guys showed that the PSA does spike during covid, and results of .6 increase lasted for 3 months, but I digress). So I went on a 1 week antibiotic and we retested 12 days later and bam it is back to .92. I am also scheduled for an MRI on sunday, but that may be cancelled. That's it, that is what has kept me stressed for two weeks. PS, the week leading up to my PSA's every 6 months is stressful as well. Other patients I talk to experience the same.

I like good news

I'll keep it simple. PSA today was 0.846, so in the range I've been in since treatment, except for the hanky panky spike spring of 2021. And going to go off of Flomax and see how I do. If I get off of Flomax I will be medicine free, which as I approach 50 seems pretty cool. Have a wonderful Halloween, Thanksgiving and Christmas.

No hanky panky... before a PSA test

So after my December test and the enthusiasm of my doctors I had a pretty good run for three months. Then I went in to get another PSA, this time it came back 1.3. Uh oh, have I made a mistake? Was it aggressive and wasn't treated soon enough?

Well I spoke with the oncologist and she asked a few questions. Have you exercised beforehand? In the last 72 hours have you … hanky panky? The answer was yes to both. So they say you can see a little bit of a rise with either one of those, so we rescheduled for another PSA 4 weeks later.

1. No hanky panky 72 hours before test (I went with the over)

2. No heavy workouts. I stopped swimming for a week leading up

3. No trauma to the area, not sure why I would do this, but yeah didn't go any where to get racked

So basically I went relaxation.

So the day came and the results came back 1.0, so basically where I was when Emory was high fiving me. The doctor explained more that do not fret too much on the movement here and there, that in the same blood sample I could get a .9 or a 1.1 reading. It's more the steady rise and jumps they will look out for, and don't come back for 6 months!

So this journey has been amazing. Ups downs, side ways. As I keep moving along I will keep updating you on my progress.

December Blood Test

It has a year since my treatment ended. And I continue to believe I made the correct choice for my family and my health in getting Proton Therapy for my cancer. Everytime I visit Emory I have to fill out a questionnaire. Questions asking about peeing, pooping, and sex. Questions are rated on a scale of 0 to 5, 5 being the most severe. Once I'm done they add up my score. And they could not be happier with how low my scores are. I'm not at zero, but I'm close. I tend to pee twice in an hour sometimes, and as they evaluate my diet (coffee, water) that can cause that issue more than anything else. I have no symptoms that disrupt my daily life. Most ask how often do you get up at night to pee. Last night I was asleep by 9:00 and I was up at 5:00 to pee, so 8 hours of sleep with no issues. It has been great considering all that could have gone wrong. So in the last 18 months my PSA has gone from 3.9, to 1.2, to .96, .87, 1.0.

For those that have read the book, or experienced proton treatment there is a point where a bump may occur. As the doctor explained it will not always be the same, the number will move around a little bit. With my numbers being low and close together I am now moved to only having my test every six months.

So 18 months ago to now, it has been a crazy journey. I love you all and thank you. I look forward to updating everyone once there is more news.

September Blood Test Is In

In three months my PSA has dropped another point, to .868. I have the expression on my wife's face etched into my mind when I gave her the news. She continues to be a rock for me, and my biggest supporter.

9 months after treatment and I am constantly reminded of the experience I went through and what I continue to go through. Bob's book is a fixture on my desk. I have been fortunate to become an advisor for prospective patients for Proton Bob and Emory. 

December 8th I will have my 12 month appointment down at Emory. Cannot believe it has been almost a year since I started my treatment last October.

Have an awesome day!

Second Blood Test at 6 Months

.96

Does this mean I'm cured. Not so fast. Yes this news is awesome. I am still 4 1/2 years away from being what some would say cured.

Yesterday I flew down to Atlanta, during all this unpleasantness. It was awesome. Airports in Richmond and Atlanta were empty. On my return trip I had one person in front of me in the TSA pre check line. In the past it took me 30 minutes to get through.

I think tonight calls for a nice cocktail. Next PSA in three more months.

First blood test...

I had my first PSA blood test done on Thursday March 12th. I had to navigate past the Corona Virus hazmat suit block aid. After answering a few questions I was allowed in.

So Monday morning, March 16th I was able to pull up my patient portal. The results were posted. So after going from 2.2 in 2018, to 3.9 in 2019, on March 12th my PSA was 1.28.

Yes, I'm happy. Later in the morning Emory called and said it should stay there, maybe bounce around some over the first year, and may go even lower.

If the corona virus ever allows me to head down there I'll be able to meet with them again. So as of now all signs are good, just a few more years of watching and waiting.

First check up down ... several years to go

Went to Atlanta for a few hours yesterday for my one monthish check up. I've been back as long as it took to get my 28 treatments. Wow. So it was basic check up like I had every Tuesday I was there. Weight, blood pressure, temp, heart rate, oxygen levels. Then a nurse asks a bunch of questions, do you have pain, discomfort, blood in urine, how often are you peeing, any question that you can think up that deals with the region down there. (this doesn't include the paperwork you fill out with all the same questions). Then a resident Oncologist comes in, and all the same questions are asked, yes, they are thorough. Final Dr. Goodette arrives and asks several of the same questions. Everything is progressing as it should, still run down at the end of the day, still some shortness of breath, I did drop down my Flomax intake from twice a day to once. We will see how it goes.

Next I fly back in March, and this is when they start taking blood and checking my PSA.

What's next?

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.

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.

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.

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.

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.

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.

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.