April 28, 2025
Seventeen Years On
Seventeen years and we have returned to the cancer ride - this time it has found its way to his lungs, bypassing the normal route of lymoh or bones - an unusal 'case' that took us on a vacation to Mayo Clinic last month.
April 10, 2009
The Next Easter
Its been just over a year since I started this blog....I just haven't had time to keep this going and have wondered about who wants to read it anyway. As I review, I think we have created great Log, with all the details, should we need to 'pull that up' again in the future.
There are entries from then to now that I will fill in as I can - things about 2nd opinions on biopsies, margins, and what they might mean now and later. But this post will be about where we are now, the next Easter after surgery, because last Easter we were one week out from major, 'rearrange you inerds' surgery. My beloved is stronger, leaner, and riding way ahead at this point in time. He has transformed himself maybe more than the surgery. In fact, he may be addicted to fitness challenges, as he is planning a first Triathalon for midsummer!
July 31, 2008
"The Bear"
"You rode 100 miles last weekend, you aren't really going to attempt "The Bear" (with your brothers) 1 week later, are you?" I couldn't believe this thinking, this determination, this craze to exhaustion, but 5 days later we were driving to northern Michigan with bikes on the back, kids, and a dog.
The Black Bear begins at dusk when canoes take off to paddle 100 miles through the night ending near Oscoda - beautiful countr, by the way. The bikes take off in the morning and they do what is called a Lemans start - more crazed cycling behavior. The bikes are all corralled in one area and the riders are corralled in another. They take off at gunshot running in bike shoes to find their bikes and get on and take off - a wild beginning, adrenalin pumping so its filling the air all around.
The route is along 2 lane state highways that are mostly less traveled and scenic. We families in cars had strict instruction to provide drinks that had been prepared ahead in labeled bottles for each of the 4 riders we were 'supporting'. We were supposed to pull of the highway and stand with drinks ready to pass out to the riders - that was interesting. Those 'experienced' riders knew to slow down a bit to grasp the bottle in our outstretched hands, but my less experienced, and very competitive spouse, wasn't going to slow down at all as long as a brother and sister-in-law were ahead of him. So he missed the grab and the bottle went rolling to the ground, on the road, in between all the wheels approaching! That managed to PO a few riders..... I guess we learned something and thank the lord the bottle bounced without causing a mishap.
From that point, we all knew to do hand-offs at the top of a hill, the riders all now knew to slow up, so the hand-offs went smoothly the rest of the way. It was hot, they needed drink, we did our job, we made sure everyone got something at some point because it would have been killer to ride 4-5 hours with no replenishment.
We got to the finish line just as some of our riders were getting to it and we managed to be there to see the glee, exhaustion, contentment, accomplishment, relief, and satisfaction on my beloved's face. He had ridden to cancer and back. We didn't need to think ahead any further, he would just keep riding and we could live in that kind of moment. The thinking about all scenarios and what-ifs, and treatments if this or that still happens had exhausted me. His exhaustion now comes from riding, running, and swimming ahead of it all. He has PSA tests every 3 months. For the last year they have all been less than o.o1 - the target. Sometimes they report these at three decimals, so one was 0.008, but I believe that is still the target. We just know it is nothing that has to take us on a new path, so he just keeps eating well, getting stronger, and staying the course. And I am thankful that he is doing just that.
The Black Bear begins at dusk when canoes take off to paddle 100 miles through the night ending near Oscoda - beautiful countr, by the way. The bikes take off in the morning and they do what is called a Lemans start - more crazed cycling behavior. The bikes are all corralled in one area and the riders are corralled in another. They take off at gunshot running in bike shoes to find their bikes and get on and take off - a wild beginning, adrenalin pumping so its filling the air all around.
The route is along 2 lane state highways that are mostly less traveled and scenic. We families in cars had strict instruction to provide drinks that had been prepared ahead in labeled bottles for each of the 4 riders we were 'supporting'. We were supposed to pull of the highway and stand with drinks ready to pass out to the riders - that was interesting. Those 'experienced' riders knew to slow down a bit to grasp the bottle in our outstretched hands, but my less experienced, and very competitive spouse, wasn't going to slow down at all as long as a brother and sister-in-law were ahead of him. So he missed the grab and the bottle went rolling to the ground, on the road, in between all the wheels approaching! That managed to PO a few riders..... I guess we learned something and thank the lord the bottle bounced without causing a mishap.
From that point, we all knew to do hand-offs at the top of a hill, the riders all now knew to slow up, so the hand-offs went smoothly the rest of the way. It was hot, they needed drink, we did our job, we made sure everyone got something at some point because it would have been killer to ride 4-5 hours with no replenishment.
We got to the finish line just as some of our riders were getting to it and we managed to be there to see the glee, exhaustion, contentment, accomplishment, relief, and satisfaction on my beloved's face. He had ridden to cancer and back. We didn't need to think ahead any further, he would just keep riding and we could live in that kind of moment. The thinking about all scenarios and what-ifs, and treatments if this or that still happens had exhausted me. His exhaustion now comes from riding, running, and swimming ahead of it all. He has PSA tests every 3 months. For the last year they have all been less than o.o1 - the target. Sometimes they report these at three decimals, so one was 0.008, but I believe that is still the target. We just know it is nothing that has to take us on a new path, so he just keeps eating well, getting stronger, and staying the course. And I am thankful that he is doing just that.
July 22, 2008
Back on the Bicycle
It was difficult enough to recover from surgery and rearranging organs, but when would he be able to get on that new bicycle and ride away? I think it was about 7 weeks before he snuck on the bike (set up on an indoor trainer) and rode standing up the whole time. Phew! I could not do that - it takes a lot of determination. So he began to ride...and ride...and ride...and pretty soon it was June and he started riding a bit outside.
I have to talk a bit about my hubby's family here, because he has 9 brothers and 1 sister. Two of his bros have been riding for years, they are all competitive, and they do things well together. There was talk about "The Bear", a Century ride that those 2 have been doing a few years....its 100 miles following canoes across Michigan - pretty nice ride, but completely a new thing to us. Those three muskateers had talked about doing this ride BEFORE cancer showed up - but with surgery March 17 and 10-12 weeks prescribed with no sitting and riding on a bike, it just seemed like a century ride in July was out for this year.
So, mid-July came around, along with a local century ride and an old friend who said,"Let's try it, its right in our neighborhood, and we could learn......" so they did it. I drove the route, it rained like heck, but I finally found them at the refreshment station a bit more than half way through. Amazing....this man of mine was doing this ride - and he wasn't coming in last at all. He had finally landed in the "Riding Ahead of It" zone, I think.
I have to talk a bit about my hubby's family here, because he has 9 brothers and 1 sister. Two of his bros have been riding for years, they are all competitive, and they do things well together. There was talk about "The Bear", a Century ride that those 2 have been doing a few years....its 100 miles following canoes across Michigan - pretty nice ride, but completely a new thing to us. Those three muskateers had talked about doing this ride BEFORE cancer showed up - but with surgery March 17 and 10-12 weeks prescribed with no sitting and riding on a bike, it just seemed like a century ride in July was out for this year.
So, mid-July came around, along with a local century ride and an old friend who said,"Let's try it, its right in our neighborhood, and we could learn......" so they did it. I drove the route, it rained like heck, but I finally found them at the refreshment station a bit more than half way through. Amazing....this man of mine was doing this ride - and he wasn't coming in last at all. He had finally landed in the "Riding Ahead of It" zone, I think.
March 25, 2008
You Got all the Cancer, Right?
It's the One Week Return Visit to the Clinic day. We have heard about this since we made the first inquiry phone call 8 weeks ago. It's a big day - you hopefully will get tubes out, get incisions checked, any bruising is noted, you talk about functions returning, you might get some Viagra, and you have a Cystogram to check on the new bladder/urethra connection (the anastomosis). I have come to believe the Anastomosis is something like gold - it is to be protected, or maybe its magic that you have to believe in because it holds your future, I don't know, but for prostatectomy men - its very important and its one reason to hire a very experienced surgeon.
After the 3 hour trek, we arrive a little early for our appointment and they say, "we are ready for you, please go down the hall for your Cystogram". We go through the doors and this is the first time I, me, the spouse, is told to wait outside. I wait and wait and think, "how long can this x-ray take?". After about an hour watching people pass by and go through doors with swipe cards, a white-coated woman appears and escorts me to an exam room where I later learned they stopped mid-pathology report conversation when my husband asked, "Shouldn't my wife be here for this?"
More about me: I always have a gazillion questions and I am often ahead of everyone else, so he knows me......my blessing can be a curse. Just talk to me in your language, I get it, all of it. Any words that are new I will look up, any questions I can research - I can read journals, I can find what is relevant, and I will be on top of it as quickly as I can. I have worked in many areas of health care over my 50+ years and I need to know as much as anyone involved in the case - or more, perhaps.
So, the PA gives a brief overture before the Pathology report - the Crystal ball to our future. She covers rehab, meds, incision care, then gives a few comments on the Pathology report, which we are reminded we will have a copy of when we leave. "Wait a minute, step back, you said Clinical Stage T3a?" "Extensions beyond the prostate?" The presurgical DRE exam by 'the Master' came in at a T1C - we skipped over a stage. Now, my questions need to start formulating..."Give me that report right now, so I can pour over it while I am here and can ask questions...". These are my thoughts, not my words because I am being the unobtrusive spouse assisting with leakage that is now pouring out the hole where the tube was located just a few minutes ago. "How long will it take for this hole to close off?" This is getting to be a lot to do, and think about, and I am glad there isn't another person in the room because it is too small and my brain can't handle any other input at the moment. The PA leaves and fluid is gushing out, so I find pads and 4X4s in the cupboards to soak it all up. Boy, I'm glad I know how to open a sterile 4X4 package......
So I have one important question..."What about the Surgical margins?" * NOTE - If you are in the Cancer boat facing the big waves of surgery, you need to know about surgical margins - its the answer to "Did they get it all? It's more gold.
"The margins are clear" - words to my ears and to my eyes later on. "I will think about this all later, Rhett...."
After the 3 hour trek, we arrive a little early for our appointment and they say, "we are ready for you, please go down the hall for your Cystogram". We go through the doors and this is the first time I, me, the spouse, is told to wait outside. I wait and wait and think, "how long can this x-ray take?". After about an hour watching people pass by and go through doors with swipe cards, a white-coated woman appears and escorts me to an exam room where I later learned they stopped mid-pathology report conversation when my husband asked, "Shouldn't my wife be here for this?"
More about me: I always have a gazillion questions and I am often ahead of everyone else, so he knows me......my blessing can be a curse. Just talk to me in your language, I get it, all of it. Any words that are new I will look up, any questions I can research - I can read journals, I can find what is relevant, and I will be on top of it as quickly as I can. I have worked in many areas of health care over my 50+ years and I need to know as much as anyone involved in the case - or more, perhaps.
So, the PA gives a brief overture before the Pathology report - the Crystal ball to our future. She covers rehab, meds, incision care, then gives a few comments on the Pathology report, which we are reminded we will have a copy of when we leave. "Wait a minute, step back, you said Clinical Stage T3a?" "Extensions beyond the prostate?" The presurgical DRE exam by 'the Master' came in at a T1C - we skipped over a stage. Now, my questions need to start formulating..."Give me that report right now, so I can pour over it while I am here and can ask questions...". These are my thoughts, not my words because I am being the unobtrusive spouse assisting with leakage that is now pouring out the hole where the tube was located just a few minutes ago. "How long will it take for this hole to close off?" This is getting to be a lot to do, and think about, and I am glad there isn't another person in the room because it is too small and my brain can't handle any other input at the moment. The PA leaves and fluid is gushing out, so I find pads and 4X4s in the cupboards to soak it all up. Boy, I'm glad I know how to open a sterile 4X4 package......
So I have one important question..."What about the Surgical margins?" * NOTE - If you are in the Cancer boat facing the big waves of surgery, you need to know about surgical margins - its the answer to "Did they get it all? It's more gold.
"The margins are clear" - words to my ears and to my eyes later on. "I will think about this all later, Rhett...."
Easter Weekend - Bladder Cycling
It doesn't seem like Easter weekend. No baskets, no bunnies, no hunts for beautiful eggs, and no big meal to prepare, or share. That's ok with me, but I am sure the kids would prefer the old days all dressed up in new spring fancy attire eating chocolate.
For my new man 'sans Prostate', the events of the weekend involve valves and measuring. He is one of 100 or so men who have been blessed with a new aspect of RALRP (Robot Assisted Laparascopic Radical Prostatectomy). At Henry Ford hospital, the Vattakutti Urologocal Institute calls the procedure they do the VIP - Vattikutti Institute Prostatectomy. Since January ( I smell a new study about to be published), the medical team has been using a Supra-pubic catheter (placed through bladder above pubic bone on abdomen) for the first week because it allows the person to begin cycling urine the good old fashioned way on Day 5....with back-up. During surgery, a regular Foley catheter is placed, along with the supra-pubic catheter. If all flows well with the supra-pubic, which is much smaller, the foley is removed the day following surgery, prior to discharge.
I am not a man, but having a tube placed in the urethra for a week or so, seems like it could be challenging, if not just uncomfortable, irritating, and humbling. So, to have it another way seems like a big improvement to the Prostatectomy process. It amazes me to think that here we are in a day and age when surgical procedures are consumer-driven. They asked men what were the most difficult aspects of the VIP and they are trying to improve those aspects. We feel lucky to be on this side of that.
Day 5 arrives with much anticipation. Today we get to see how the new plumbing works - he has to shut off the catheter valve, let the bladder fill until he feels like he has to go. Then he empties, measures it, shuts off the valve, waits 30 seconds, then drains and measures any residual. Seems rather practical, but will it work?
Yessirree!, hooray for those who can stand up and pee! It's rather mechanical, but it works. A little blood at first, a few small clots, but all to be expected. We have to chart all this, so we come up with our own parameters adding an urgency scale to the notes. We don't know if there is a goal to all this - do you want more time between empties? Do you want to hold greater amounts for longer periods of time? Do you want less, or no, residual?
Charting this Cycling happens for 2 days, then we return to the Clinic to see what freedom may lay ahead. My man is pretty pleased this has gone as it has. Sometimes life brings you to a place where you are happy just to pee.
For my new man 'sans Prostate', the events of the weekend involve valves and measuring. He is one of 100 or so men who have been blessed with a new aspect of RALRP (Robot Assisted Laparascopic Radical Prostatectomy). At Henry Ford hospital, the Vattakutti Urologocal Institute calls the procedure they do the VIP - Vattikutti Institute Prostatectomy. Since January ( I smell a new study about to be published), the medical team has been using a Supra-pubic catheter (placed through bladder above pubic bone on abdomen) for the first week because it allows the person to begin cycling urine the good old fashioned way on Day 5....with back-up. During surgery, a regular Foley catheter is placed, along with the supra-pubic catheter. If all flows well with the supra-pubic, which is much smaller, the foley is removed the day following surgery, prior to discharge.
I am not a man, but having a tube placed in the urethra for a week or so, seems like it could be challenging, if not just uncomfortable, irritating, and humbling. So, to have it another way seems like a big improvement to the Prostatectomy process. It amazes me to think that here we are in a day and age when surgical procedures are consumer-driven. They asked men what were the most difficult aspects of the VIP and they are trying to improve those aspects. We feel lucky to be on this side of that.
Day 5 arrives with much anticipation. Today we get to see how the new plumbing works - he has to shut off the catheter valve, let the bladder fill until he feels like he has to go. Then he empties, measures it, shuts off the valve, waits 30 seconds, then drains and measures any residual. Seems rather practical, but will it work?
Yessirree!, hooray for those who can stand up and pee! It's rather mechanical, but it works. A little blood at first, a few small clots, but all to be expected. We have to chart all this, so we come up with our own parameters adding an urgency scale to the notes. We don't know if there is a goal to all this - do you want more time between empties? Do you want to hold greater amounts for longer periods of time? Do you want less, or no, residual?
Charting this Cycling happens for 2 days, then we return to the Clinic to see what freedom may lay ahead. My man is pretty pleased this has gone as it has. Sometimes life brings you to a place where you are happy just to pee.
March 22, 2008
The Three Questions
There are three questions a man asks when facing all this:
1) Will they get all the cancer?
2) Will I be able to pee again when I want to and not when I don't want to?
3) Will I be able to physically love again?
Think about those questions - when did you last have to ask yourself one of them? Try all three, then try prioritizing them...hmmm...most seem to come to the same conclusion. This weekend, we will get a preview to one of those questions.
1) Will they get all the cancer?
2) Will I be able to pee again when I want to and not when I don't want to?
3) Will I be able to physically love again?
Think about those questions - when did you last have to ask yourself one of them? Try all three, then try prioritizing them...hmmm...most seem to come to the same conclusion. This weekend, we will get a preview to one of those questions.
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