Checkup

Three months ago, I was waiting for the results of my first post-surgical PSA test.  Unfortunately, prostate cancer can recur many years after apparently successful treatment, and requires lifelong followup.  For the next few years, I have to get a blood test every 3 months to see if the PSA rises, and at least annually thereafter.

The appointment was something of a moment of truth, to determine if the surgery had really been a success.  In the weeks leading up to it, I was highly anxious.  Particularly because the pathology report, and the surgeon, had left some doubt about whether the surgery had gotten all the cancerous tissue.  By the time the day itself rolled around, I had half convinced myself that the news was going to be bad, and the results would show that I still had cancer.  More than half, in truth.

At a teaching hospital like KU, you have to wade through the residents before you actually get to talk to the doctor.  Mandy and I met with the resident, but I barely heard the questions he was asking.  At the end of his exam, he looked at his file and told us the doctor would be in to see us shortly.  Then he suddenly asked, “Has anyone told you what your test results were yet?”  We were caught off guard, and just shook our heads, when he said, “Undetectable.”   

The relief was startling after all the thinking I’d done about it, the nearly endless loop of hope, then uncertainty, followed by a little fear.  To a certain extent, I wished for the person I was before I learned I had cancer.  A certain innocence had been lost, and my own mortality was no longer an abstract idea. I feared the cancer.  For while, every little pain made me remember, and wonder if cancer had returned or spread.  This may fade over time, but probably never leave me completely.

I don’t want to sound like I’m making more of this than it is.  I got off easy, as far as cancer goes. I didn’t “fight” or wage some heroic battle against cancer.  I was sick, the doctors fixed me, and now I’m better.  There are many people who are facing much more serious struggles, and wish they had only to deal with the problems I did.

During this period, through some people who reached out to me and through common contacts, I started following several stories of people affected by cancer - some my age and younger, some not that much older.  One just died today, and another was told that hospice care was the only thing left to try.  I’ve read their blogs from the point at which there was hope and determination, through the fear, and finally to the stage where they had to face the realization that they were not going to survive their disease, and even tell their kids about it.  

While I can’t relate to dealing with it at that stage, I do know what it’s like to think about leaving a vibrant wife and two young sons, to think about what could have been if things had turned out worse.  

I didn’t write anything about it at the time of the appointment, maybe for fear I’d jinx it, but I’m a different, calmer person this time.  Tomorrow, I go in for my second checkup.  

Good start to February

Wednesday Paul had arthroscopic knee surgery to repair a torn meniscus that has been giving him pain since last summer.  We had other priorities to deal with, so it's been put off quite awhile.  Grandma Joann watched the kids while I was with him.  When I got home, Elliot went down for his nap and I got Noah out of the house.  We walked to Baskin Robbins and had an ice cream cone then wandered into Reading Reptile.  We settled into the Science section looking for space books, but settled on a book all about Arthropods.  We read about half of it when we decided to buy it.  By the time we got home, we woke up Elliot and headed to the park.  Paul rested, elevated and iced his knee all evening.  It was nice to be able to be there for Paul leaving the kids with Joann, but still enjoying the wonderful weather in the 60's that afternoon with the kids. Paul's knee is healing nicely and he's looking forward to a full recovery and being able to exercise on it without pain.

Snuggled up at Reading Reptile

More fun at the dirt piles

He's always been a crazy climbing fool

Pretty high up in the tree 

Silver lining

There aren't many benefits of recovering from surgery, but there is one.  I'm getting to see my boys much more than I normally do, and even though I can't do much with them, it is enjoyable just talking and listening to them.  And occasionally I get to do things I can't do because I'm at work.

This morning, I took Noah to school, and walked him to his classroom.  He showed me where he puts his backpack and where he sits, and hugged me when I left.  It was a little thing, but I loved it.  He looks like such a big boy going off to sit at his table.

Later, I played with Elliot at the park.  In between work calls, I "chased" him around the playground.  It's a little sad because I can't run yet, or even move very fast, so he gets mad, sits down and cries because I'm not chasing him.  He took my hat, and wouldn't give it back.

Great Prostate Cancer Challenge

Even before my surgery, Mandy signed us up for the Great Prostate Cancer Challenge 5k run.  She wanted to do something to contribute to getting the message out about prostate cancer.  I thought it pretty optimistic at the time, coming only a couple weeks after my scheduled surgery date, but things progressed better than expected and we were all able to turn out.   Both boys woke up extremely early for some reason, and Noah came downstairs and said "Happy race day, daddy!".  He had been excited to run it.  We were joined by Mandy's mom, and our friends Jacob and Jenni on a great morning.

We ended up walking 1.7 miles.  I wanted to walk further, but I wasn't feeling it and the kids were getting tired as well.  But I was glad I had been able to get out and participate.  I had several men who had been through the RP procedure ask how on earth I was out there just two and a half weeks after surgery.  Noah and his friend Liam ran off and on the entire way, and when we approached the finish line, they hauled ass towards it.  They were running so fast and hard they ran past the turn off towards the finish, and had to be redirected by the cops.  We hadn't yet turned the corner, and the last we saw was them running full speed together.  While we couldn't see them finish, we could hear the crowd erupt in cheers as they made it towards the finish line.  Fortunately, the event photographer captured some great pictures of their finale.

We stuck around and played a few games, had some pancakes and donuts, and I even got my picture taken with a Jayhawk mascot.  It goes against my Mizzou blood, but what they hell - they did save my life, I suppose, so I'll give them a pass this time.  Elliot also won a $50 gift card to the Capital Grille.  Sorry, little guy, but you're going to have to miss out on this one - mommy and daddy will be taking care of spending it on our next date night. Mom says you owe her.  

All the way up to this morning, I wasn't sure I would participate.  My recovery hasn't been linear, but more up and down.  I'll feel (relatively) great for a couple of days, then really struggle for a while.  I was walking several miles a day, but I was sidelined almost all of yesterday, and except for this morning's walk, I've been cooped up inside resting.  It seems like as some part of me gets better, some other part of me starts having more issues.

When I had absolutely no choice but to be patient, I was pretty good about it, but yesterday I let the pain and frustration and limitations get to me, and I turned into a bad patient.  I undeservedly made Mandy's life miserable the last day and a half - the one person that is bearing more of the brunt of this than me, and doing her best to keep me, the kids and the house all going.  I apologize sincerely.

This up and down is all part of the healing process.  It can be a little concerning at times, but it's all normal (repeated calls to the doctor keep assuring me), and there are some indications about long term effects that are very promising very early on.  I have been much more physically active than many who've gone through this surgery can expect to be at this point, and I have to remember that relatively, I'm doing extremely well.  I'm an impatient patient, but I have to remember that's not anyone else's problem.  This is a 4-6 week recovery, not a two-week one and in the grand scheme of things, this will be just a blip on the timeline of my life.  I'm down about 15 lbs since the surgery, mostly due to diet, but partially due to loss of muscle mass I'm sure.  It won't be that long until I'm at full speed again.

  

The crowd cheered as he and Liam ran the final few feet.

Bringing up the rear

Liberation

Yesterday was a milestone day in my recovery - I was freed from the catheter that has been my painful companion for the last two weeks.  It was like being let out of jail.  Adding to this, the weather has been absolutely ideal. 

This morning was crisp, and I took a nice leisurely walk to the coffee shop with Noah to get a muffin for breakfast.  He had really missed me these past couple of weeks, and I had missed him.  We spent a good hour and a half just chatting about all sorts of things.

After we got back, I tagged along as Mandy took the boys to the park.  It was nice to sit outside in the sun and watch the boys play. 

Elliot digging into lunch

This evening, I watch the boys play tag in the back yard before bath time.

Good times

It was about 6:45 AM, and Mandy and I were sitting in Starbucks having a coffee.  She was anyway, since I had to stop drinking liquids after midnight.  We were up early - neither of us had expected to sleep well anyway - and we decided to take advantage of it.  My phone rang unexpectedly, and I saw KU Med calling.  My first thought was hoping they hadn’t cancelled the surgery for some reason.  I didn’t think I could psych myself up for this twice.  The nurse on the other end asked me if I was still planning on going through with it, and when I said yes, she asked me where I was.  They’d called twice before, incorrectly telling me to be there at 7:30, when that was actually the scheduled surgery time. Damn, the last thing we needed was any thing more to stress about this morning. 

We rushed right over, filled out some paperwork and were met at the elevator to take me back to pre-op.  There was a ton of people all working on me at once.  They weighed me, prepped me, I.V’d me and hooked up monitors.  Every few minutes someone would ask me my name, birth date and what I was there for.  I hoped it was a test of some kind, and they weren’t really wondering.   After asking several times, they finally brought Mandy back for a couple of minutes.  I took off my wedding ring, handed it to her, and off we went.  In hindsight, the rush eliminated any opportunity to sit around and get nervous. The surgery took about four hours, and they kept Mandy and my dad updated about how I was doing.

That first night post-op, I was fine.  No real pain, since I wasn’t moving, and mostly dozing in and out.  Mandy stayed to make sure I had a good nurse for the night, and then went home to sleep around 8:30.  Except for nodding off a few times, I stayed awake the entire night.  It didn’t bother me, I just didn’t seem tired.  

The next day, I had to get up and walk, with Mandy helping me up and down the hallways.  I was still just eating liquids, but that was fine with me since I could barely take a full breath, much less eat a big meal and I had no appetite anyway.  I had six holes in me around my midsection from the robot, and a bruise on one side that was about one foot by six inches. I was sore; it felt like I had done a couple thousand situps.  

The doctor came to check on me around noon, and we decided to go on and check out since I was feeling relatively good.  Five minutes after he left, I had a spasm so excruciatingly painful that I couldn’t move, or even speak to tell Mandy what was wrong.  I may know what it feels like to be Tased now.  The doctor later told me it was a bladder spasm, and the pain is on par with giving birth.  My hat’s off to you ladies.  I’m amazed we have so many babies running around. Unfortunately, I would continue having these on and off for the next 10 days

The first night home was painful, messy and uncomfortable and I could not fathom how I would make it through the next two weeks.  I wished I’d stayed another night in the hospital, but it was too late now.  Mandy took Noah to a party he’d been begging to go to, and my mom took care of Elliot.  After I finally got situated, I did sleep a little bit.  The next day, I got up walked around the house a little, but mostly napped.  Three days after surgery, and four days after I started my liquid diet, I finally ate a little real food - mostly fruit and soup.  I was already going stir crazy.

The next morning, Mandy got up with me at 5:30 AM to go for a walk.  This is the essence of the recovery right now - no lifting anything, just walking.  I walk mornings and nights, in the dark to avoid neighbors, about 3-4 miles a day.  I overdid it early, and I was painfully slow, but it was good to get out of the house.   Sitting around reading books or watching movies might sound like a pretty good gig, but it gets old in a hurry, especially when you can’t concentrate much anyway.  

I had a really comfortable La-z-boy to sleep in, but it felt like a prison after the first day.  So did the house after a while, and when the temperatures hit 103 I couldn’t even sit out on the patio without being uncomfortable.  After a week, I finally ventured out with some friends who came by and took me out for lunch.  It wasn’t comfortable, but it was amazingly liberating to get out. Funny what a little change in perspective can do for you when you’re life is reduced to the fundamentals.  

The first few days, I tired pretty easily and there were a few ups and downs along the way, but about five days after the surgery was the absolute low point. I was tired of dealing with the pain and discomfort, and it started to get a little overwhelming.  I also got a call from the surgeon explaining the pathology report, which was good, but not what we were expecting.  He said he was "shocked" by the amount of cancer involvement, given what the biopsy led us to believe, and especially in a man my age.  And the as for the surgery, without getting too scientific it was sort of like the difference between “We got it all” and “We’re pretty sure we got it all.”  

But as I’m writing this, I’m enjoying the most beautiful fall-like day we’ve had this year, out on the patio listening to my favorite music while the breeze blows.  I’m feeling good, and it almost feels like I’m going to get through this. Tomorrow is the first post-op visit, and I get the catheter out - it will be a banner moment for me, and allow me to be much more mobile.  

Our family has had a great deal of support from family and friends during this time, and it would be impossible to adequately thank them.  My mom stayed the week and helped tremendously with the kids and letting Mandy take a break.  Mandy’s mom came over frequently to help out with that stuff too, and many of her friends got us meals, or took the kids for awhile, or other things that made life easier.  There was a local TV news anchor that’s been through this before, and he was outstanding in his support, both before and after the surgery, with both of us.  On several occasions we would get Facebook messages from him during the commercials of the newscast.

Mandy was the absolute best.  She took on taking care of me when I needed it, and the kids and the rest of the house when it needed it.  During all this, she was laid low by a combination of allergies, sinus infection and virus all at once, and managed to keep going through some pretty miserable days for her.  She’s my favorite nurse.  

Now I start from scratch, and get back into fighting shape.

Surgery was a success

Paul went back to the OR shortly after 7:30am.  About 11:15 I talked to his surgeon and he said things went very smoothly.  It's been 2 hours and we are still waiting for him to wake up.  They woke him up, treated his pain and he's sleeping again.  Anxious to go back and see him, but surgery is behind us, now we move on to recovery.  Will update later tonight.

Ready

We've been busy lately, trying to get ready for a few weeks away from work, and a few weeks of single-parenting.  Since our summer plans came to an end, we've both been getting edgy and anxious, simultaneously wanting to get this event behind us, and not wanting to face it.  Mandy described me as not being "present".  She was right.  I was a million miles away.

As I put the finishing touches on work on Tuesday, and drove to meet Mandy out on an impromptu date, I realized I felt more relaxed than I had been in weeks.  With getting the to-do list done as best I could, and the inevitability of what was next, I was now just along for the ride.  We had a great time out, and talked about the next few days.  We're pretty ready at this point.

This morning, I got up early and went for a ride. I left the house about 5:00 AM and headed north, with no particular destination in mind.  I don't usually ride much in the dark anymore, but I enjoyed it.  I like the lit-up skyline profile of downtown Kansas City, and seeing the stars once the city lights dim and you're in the country.  I ended up in Kearney, where I grew up, and drove by places where many of my early memories were created.

I headed back home to enjoy a day off with the boys, stopping to watch the sunrise from the riverfront.  Only Elliot was up when I got home, so I sat and played "cars" with him - he likes to crash these two cars together over and over - until Noah got up.  I made pancakes for the boys while Mandy went for a run.  They wanted to go to the park afterwards, so that's what we did.

It was hot, but Noah insisted on playing tag and hide-and-seek, and swinging in the sun.  We brought food for a picnic.  I was on a clear-liquid diet, which is about as fun as eating grass.  I've had a jello cup, a couple of popsicles, some chicken broth, and one of the powder packet from a pack of ramen noodles. I must eat out of boredom a lot, because I kept catching myself opening the refrigerator looking for something to eat before remembering I couldn't.

It was pretty relaxed day, and we had fun with the boys.  Noah asked me a few more questions about going to the doctor, and told me he would bring me an entire box of popsicles.  All on his own, he made me a hand-lettered card that said "I HOPE YOU FEEL BETTER.  NOAH".  He asked me whether I wanted it at the hospital or at home.  I said, "home".  He told me "No, I'm going to tape it to your bedroom wall".

They're now in bed, and we're waiting for tomorrow.  See you in a little while.

Sunrise on the Missouri River.  No one was around, so I just drove up the sidewalks near the riverfront and sat for awhile.

Sliding at the park

Playing tag

Riding bikes

Noah hauling ass around the playground.  Not sure why he wasn't wearing his helmet

Sweating like pigs, but having fun.

Trying to get a good picture with both boys is, in fact, impossible. But we tried.

Ear Tubes for Elliot

Elliot had his ear tube surgery on Wednesday. It went very well, as I expected it would. We got there about 6:30 and he was a happy camper. He is always an early riser and likes to play before eating anyway, so he was in a good mood. He was not too happy with me when I took him out of the cozy coupe car because it was time to go back for surgery. He did cry when I handed him over to the OR nurse which was sad :( But, they said he'd be out within a minute. He must have been. I left him with her at 7:29. By 7:40, his doctor came out to tell us it went great and they'd get us as soon as he was awake. About 20 minutes later the volunteer escorted us to the back. I was anxious that he'd be crying for me. Wrong. He was happy in the nurses arms eating teddy grahams and drinking apple juice. I never even gave him tylenol. He had to have "indoor, supervised play" for 24 hours, but he was SO fine. It was like nothing ever happened.

Glad it's over with and thrilled I don't have to deal with ear infections every time he gets a cold. He may actually still get them, but if he does the tubes will allow the infection to drain out and I already have ear drops on hand to treat it with for a few days without going to the doctor. Yay!

Tubes for E

Elliot had his ENT appointment yesterday. They tested his hearing and he needed noises a little louder on his right side than his left. His right ear has a lot of fluid in it (though not currently infected) and is the one that is always getting infected.

Since it's summer and ear infections usually go down in summer we had the option of waiting it out or being proactive and getting tubes placed. I am all about being proactive. Ear infections suck. Antibiotics are no fun. And last year in Colorado when we were hiking with him at 13,000 feet as he was spiking a fever.........really not fun. Do NOT want that to happen again.

So he gets tubes placed in 2 weeks. It's a simple and quick procedure (15 minutes) and I'm not worried about it at all. It will be at Children's Mercy and I know they'll take good care of him.

This morning he was pulling his ear and signed "hurt", but I think it might just be the pressure since I just had it checked late yesterday. Hoping we can hold out until his surgery with no more infection.

Elliot's Big Day

Elliot's big day actually started the night before, as we kept both boys up late hoping they would sleep in the next morning. Elliot couldn't eat after 4:00 AM, and surgery wasn't scheduled until 9:00. Five hours is a long time to go without eating for a 5-month old.


We played trains for a long time and E can now stand up holding onto things for several seconds. He would grab a train off the tracks, attempt to eat it, then hurl it on the floor and get mad. After that, we went on a long walk with Wally and played at Border Star's playground. A cool front came into Kansas City that night and we could have stayed out forever. Unfortunately, we didn't think to bring money or we would have eaten dinner out too.

It worked perfectly to keep the boys up late, as E stayed asleep until about 20 minutes before we left for the hospital and Noah stayed asleep until we were gone. Elliot and Mandy had some last minute hugs at the house before leaving.

We checked into Children's Mercy and got Elliot dressed in his hospital gown - looks a lot cuter on a little baby than it does an adult.

We spent some time in a pre-op room, getting vitals and giving information to the nurse and anesthesiologist before surgery. We also had time to play. Elliot did so great for not eating - he was barely fussy at all, and had fun playing with the toys and with Mom and Dad.

These eyes will be fixed in another hour or so.

We had a brief consultation with Dr. Olitsky right before the surgery.

Some final hugs and kisses before surgery:

We walked him back towards surgery, and he continued to be happy as can be. The nurse decided to hold him rather than put him back on the bed, which is much less scary for a little guy. They promised us they'd gas him right away to put him out so he wouldn't be awake without us for long. They also waited to start his IV until after he was out. All little things that make a huge difference for Elliot. I still think CMH needs to change their policy and let parents be with their kids until they are asleep in the OR. But, that said, they did a wonderful job and treated Elliot like the sweet baby he is and not just a patient to be operated on.

Less than an hour later, he was done. Dr. Olitsky came into the waiting room to tell us it went well, and that it would be another half hour or so for him to wake up before we could see him. When they brought us back to the recovery room, he was being rocked by one of the nurses rather than just laying in his bed. It was very comforting to see him being loved on. They immediatly let me have the chair and put him in my arms to nurse.

His eyes were swollen and a little bloody. We were told what to expect, but it is still a little heartwrenching to see at first. We were also told to expect his tears to be bloody the next 24 hours. I'm happy to say, our son is so amazing, he did not cry any tears afterwards. So we never experienced that.

As you would expect, he was pretty groggy for awhile.

After some sleep, we got our first good look at his eyes post-op. The sight is both a little shocking and very gratifying. His eyes are finally straight!

He cuddled with Mom and slept most of the day, but he quickly adapted like nothing happened.

Sporting his new CMH t-shirt.

Beautiful, straight eyes.

Day 2 - Going for an afternoon hike.

Elliot had just woken up....

Day 3 - enjoying some time outside:

Day 4 - the redness is really fading out now.

The difference pre- and post-surgery is night and day. The afternoon of his surgery, after several hours of sleep, he woke up happy and was immediately tracking objects from clear across the room and smiling at us from several feet away rather than from several inches. Over the next couple of days, his activity has increased dramatically as he is loving his newfound vision. His world is so much bigger now, and he is taking it all in at once. Most of all, he loves watching his brother.

Thank you to all of our supportive family and friends for your prayers. They obviously worked!