Mayo Redux Version Dad 2.0, They Call Me The Cancer Sherpa

by Sarah

We left Des Moines in the pouring rain, earlier than we planned, to get to Mayo before the predicted snow and thundersnow hit us.  The first two hours were just a downpour.  I was driving my parents’ car and the driver’s side windshield wiper quickly started to peter out.  After about thirty minutes, I was scrunching down in my seat and leaning to the far right to try to see through a semi-clear spot on the windshield.  At times, I could see nothing but thick gray.  Not the side of the road.  Not the cars and semis surrounding me.  Not anything that would give me an idea of where to steer.  I was carrying precious and rather fragile cargo and it made for a tense drive for the person in the driver’s seat.  To compound it, I’d had chemo the day before and was slightly wiped out.

Someone forgot to tell Rochester that it is indeed Spring.  Not the room-with-a-view that I’d hoped for.

Snowy view from my room

After getting settled into our hotel and a bite to eat, we decided to check out the amenities.  We found a game room and Dad and I quickly took inventory.  We hit the air hockey first.  When you play a game with my Dad, he doesn’t sandbag and he delights at winning, especially when playing me.  He took no mercy on me and I took none on him.  We were both rather vicious which seemed to prompt Mom to leave us and wander out by the pool.  Our first three games ended in ties.  The fourth one was my victory and I let out a whoop when it ended.  I expect he’ll want a rematch when we return.  Next up was Ms. Pac Man.  Dad had never played it or anything like it.  He was a little out of sorts but gave it a good go.  He’s more of a chess, poker, pitch guy but since the quarters were in, he wasn’t going to waste them.

Are you going to play or take pictures?  Let’s go!

Dad Air Hockey

We wandered over to the workout room.  Dad got on a treadmill, also for the first time.  He walked 10 minutes at a slow, steady pace holding onto the handrails and then tried the elliptical.  I’ve always admired his willingness to try new things even when they are completely out of his realm of normalcy.  Mom rejoined us and she gave everything a go, too, including the weights.  I think we all rather enjoyed it especially after the hours in the car.

Dad got a better workout than I did.

Dad treadmill

His losing-his-patience-with-me-quit-taking-pictures smile.

Dad Machine Weights

Mom rocking the close grip lat pull downs.

Mom Weights

First up the next morning was Cardiology.  They were to weigh in and give their opinion on Dad’s risk factor from a heart point of view.  It went about as I expected.  They said the surgery itself is an intermediate risk and Dad as a patient was an intermediate risk.  They’ll upload their notes for the surgeon’s review and ultimately the final word.

When Dr. Brenes asked about a family history, Dad explained that he was adopted out of an orphan’s home.  “I was picked.  They didn’t have me, they chose me and I was well taken care of.  I didn’t smoke, drink or use bad words because I wanted to make my folks happy.”  I found this interesting as they were dirt poor, a share cropper and a one room country school teacher living in rural Iowa.  They didn’t even officially adopt him until he was 11 because they didn’t have the money for the attorneys fees.  Dad felt like it couldn’t have been any better, especially once they got a house with indoor plumbing.  My grandparents were two of the most soft-spoken, kindest people I’ve ever encountered.  Then…Dad mentioned me and that I was also a patient at Mayo, that I have had two bouts with cancer, that it was in my bones and I now had titanium in my leg as a result.  Dr. Brenes locked eyes with me, the smile still on his face from Dad’s accounting of his history, but it faded as the words sunk in.  I quickly offered that Dr. Loprinzi and Dr. Sim were my physicians.  His mouth was now slowly started to gape and he didn’t hide his stunned expression.  There was a pregnant pause.  When he got his bearings, he asked if I was feeling good.  “Yep, I feel good.”  Excellent, he replied.  Back to Dad.

Dad explained that he didn’t think dying on the operating table would be such a bad thing.  “You just go to sleep and never wake up.”  We’ve experienced years, sometimes upon years, of nursing homes with both of my parents’ parents and none of us want to end up there.  We’ve seen some pretty terrible things, health-wise, in our family and know there is value in a quick, painless death. None of us want to suffer.  Martyrdom is not our thing.  When quality of life is gone, we’d just as soon go with it.  Some folks might think we’re morbid by the way we talk but really, we’re just matter of fact.  We know no one gets out alive.  As a result, the doctors, once they get a sense of Dad, his humor and his perspective, often comment about how much we end up laughing in these appointments.  It is unusual.  Evidently so are we.

Next was Medical Oncology.  They were to explore options for chemotherapy but basically said he’s probably not a candidate for anything.  The normal bladder cancer chemo is a very tough drug and is especially hard on your kidneys.  Since his kidneys have reduced function, they advised against considering it which really just reinforced our thoughts.  Chemo sucks.  I REALLY don’t like the idea of my Dad enduring it.  They do have the option to administer a low dose chemo in conjunction with radiation but getting a green light for radiation is unlikely.  When asking questions, one of the doctors in the room would look at me after Dad answered for confirmation that everything was accurate and usually I would nod after each answer.  Dad does mostly OK with everything but some of the medical stuff is hard for him to accurately describe.  When it comes to his own feelings, his comments are astute and at times, quite funny and often catch the doctors off-guard.

So, what does this mean?  It means that all of our eggs have slowly but surely been leaving the chemo and radiation baskets and are all being placed in the surgery basket.  We still don’t know if the surgeon is willing to perform the surgery but it’s looking like our only option.  Other than doing nothing and letting it spread…well, like a cancer.

We meet with Radiation Oncology next to get their thoughts and then we’ll circle back to the surgeon.  Hopefully that will be the end of the appointments and we’ll have a decision on surgery.  Dad wants to do it.  He knows the risks.  He understands what could happen but also knows that it’s the only thing that has the potential to give him his quality of life back.  He’s always been a bit of a gambler and he understands that there is no reward without risk.  This may be the biggest gamble of his life.  Although some would say having kids is right up there but I think it’s safe to assume he didn’t know the risks of THAT ahead of time.

This was a more relaxed trip for my folks.  They now have a feel for the territory and I think it made a big difference in my mother especially.  She seemed much more at ease with her surroundings, the doctors and with me which was a huge relief.  She had more trust in me and didn’t question me relentlessly as she did last time.  She thanked me for driving them and guiding them and appreciation seems to have replaced her anxiety and suspicion.  Whew.

On the way home, Dad and I chatted most of the time while Mom read.  He told me stories of racing his cars and a nefarious crash at the bottom of a hill outside of town when a drunk came at him in the middle of the road, both of them racing full speed towards each other.  Dad tried to get over but they met at a bridge and he had to pull back into his path.  His car got scraped on both sides and he got the scare of his life up to that point.  He and his three passengers were lucky to not only survive but be injury-free.  He talked of his ’54 Chevy that would do 105 mph downhill and how when he test drove the ’55 Olds and it went 120, he took it back to the dealer and said “I’ll take it.  Put a dual exhaust on it and I’ll be back to pick it up.”  Hmmm…maybe this apple falls even less far from the tree than she thought.  He talked about driving his dad home from work once they both worked at Pella Corp.  He kept it around 80-90 mph so not to completely terrify his dad.  He then pointed out that’s exactly what I was doing at the moment and we both had a good snicker.

It was two long days, in the car and in the clinic.  We were all spent, drained really.  We get to do it again next week.  Until then, we’re just treading water, having some laughs and dealing with what’s been dealt.   To be continued…