sarahsbeingfrank

Month: March, 2015

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

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…

 

My Mental Health – Don’t Be Scared, It’s Short And Funny

An unfamiliar number popped up on my phone and I thought maybe it was a doctor’s office so I answered it. It was Vicky from Mahaska Behavioral Services. They deal with people with mental health and substance abuse issues. She wanted to know if she could move my Wednesday appointment to Thursday.

Um, what?

Me: Who made this appointment?

Vicky: I did.

Me: Would you confirm my last name?

She knew my first, middle and last name and obviously my cell phone number.

Vicky: So, can I move your Wednesday appointment to Thursday?

Me: Since I’ve never even heard of you, I think it’s safe to say I won’t make it to this appointment.

Is someone trying to preempt my mental breakdown or even better, a drinking problem I have yet to develop? It may be time to start! Maybe I WILL keep that appointment…

Mayo Redux Version Dad.0

Mom, Dad and I returned from Mayo Tuesday night after two days worth of tests and appointments.  It was a long, exhausting two days, especially for my folks.  We arrived Monday so he could give blood and urine and get a urogram CT.  Tuesday we met with a Urologist and his CNP who gave Dad a thorough exam and went through all of his current records and touched on many of his past procedures.  The CNP, Emilie, was kind, patient and meticulous.  Dr. Thompson was to the point and matter of fact.  There was no mincing of words or unnecessary rays of sunshine.

Emilie asked if we used the Mayo website and if we were familiar with the campus.  I tried explaining that I was familiar with everything without saying that I was also a patient…but she quizzed me.  I told her my doctors’ names which stopped her note taking and all other movements.  She paused, turned her head towards me and looked me up and down with raised eyebrows.  “You’re looking very good.”  Yep, still kicking, I said with a grin.  Back to Dad.

After reviewing Dad’s history, we talked of options for treatment.  Surgery to remove his bladder and prostate would be the best and maybe only option for a cure, although no guarantee, but the risks are high.  Six hours of anesthesia for someone with my Dad’s health history has a moderate risk for many things including stroke and heart attack while on the table. Dad is 83 to be 84 next month.  He’s had a heart attack with a subsequent stent in his left descending anterior coronary artery, affectionately known as “the widow maker”, he’s had an aortic aneurism which was also repaired with a stent, two prosthetic hips, lung cancer less than a year ago and prostate cancer 11 years ago, a hiatal hernia, a few garden variety hernias plus plenty of other scopes and procedures.  The Grim Reaper has come knocking on his door several times but Dad and his doctors have always sent him on his way.  My dad feels like he’s always been put back together, good as new.  Dr. Thompson sees a laundry list of liabilities.  He’s reluctant to open him up.  As the doctor said, “this surgery is a big deal”.

We discussed other treatment possibilities.  Radiation is likely off the table since that area was previously radiated for his prostate cancer.  There is also the possibility that some of the radiated tissue could disintegrate during surgery.  Chemotherapy?  Well, none of us are excited about that.  He also mentioned just scraping out what’s possible of the cancer knowing that they wouldn’t get it all but it may buy him, us, some time.  We also talked about doing nothing.  No definitve answers, no clear path.  Dr. Thompson wants the Cardiology, Medical Oncology and Radiation Oncology teams to consult and weigh in.  After some serious schedule maneuvering, we managed to arrange four more appointments to occur on two days in the next three weeks.  We put a hold on a surgery date in late April just in case all systems are go and everyone agrees this is what should be done.

After all of our words were exchanged and the talking was through, Dr. Thompson wanted to have a look-see in Dad’s bladder and take some pictures.  Once he was prepped, they brought Mom and me back in so we could see what the doctor was seeing on a screen as big as my TV.  Enthralling.  It was clear as day in there.  Pink tissue with tiny red blood vessels running through it until he crept up on the black, fungus-y looking area where the original tumor was lazered out but plenty remained.  It was angry looking and reminded me of something that would grow deep in the ocean on the side of a sunken ship that had been there for a few centuries.

One big concern is the “aggravation” that goes along with this type of situation.  Having cancer in your bladder affects everything that your bladder does and controls.  Dad has to the urge to go sometimes as frequently as every 30 to 60 minutes.  Occasionally he gets lucky and can space it out a couple of hours.  He might be up six times a night.  Controlling it is an issue.  His hip hurts him and he never walks without a cane anymore.  He moves slowly.  Have you ever had to go so bad that you don’t know if you’ll make it but can’t move as fast as you need to get there in time?  He’s doing that 10-20 times a day.  A 4-5 hour car ride to get to Mayo clinic is a challenge and then after arriving, attempting to navigate that seemingly never-ending space, always hunting for the closest bathroom, fearful that the urge will come before you find the next one or even worse, you can see it but know you won’t make it.  The cancer may kill him but the day to day effects are also hard to live with.  My father is a humble man but his dignity is on the line and it is excruciating to watch.

I can and will hold it together for as long as I need, for whatever he needs.  My tears for myself have long ago dried up but seeing him deal with this has brought a recurring lump in my throat.  I will do whatever I can for him but I know that there is little I can do to change his day to day frustration.  I hate that.  More than anything, I hate that.  I’m helpless to change anything that could really make a difference.  “Do the best you can, let the rest go” is one of my Dad’s sayings (along with “I can’t miss you if you don’t go away” and “If you don’t get over it, you’ll be mad a long time”) and I’m doing my best to heed it.  Living with letting the rest go is easier said than done.  I’m trying to squeeze some exercise and fun into the cracks of my life when I’m not working or going to appointments.  I hosted a last minute backyard BBQ over the weekend and I don’t think I stopped smiling the whole time.  Good food, great people, hilarious stories.  My friends are medicine for my soul and I was in need of a big dose.

Dad is handling all of this amazingly well, as he has everything in his life.  He’s forth-right but not dramatic.  He doesn’t complain or lose his temper.  He laughs when we find humor.  He’s grateful he gets to watch all of March Madness at home.  He feels the severity of this and at times, our conversations reflect that.  The drive to Mayo provides a monotonous landscape but he and I chatted most of the way up and back about all sorts of things and I barely noticed the brown surroundings.

Mom vacillates between normalcy and being completely frazzled.  She is terrified but doesn’t acknowledge it.  She’d prefer to pretend everything is OK and mostly does which is probably as good of a coping mechanism as she could engage right now. She likes routine and knowing what to expect. Any variance from that throws her into a tailspin.  Her fear and anger bubble up in unexpected places.  I’ve witnessed a few meltdowns over the last couple of weeks.  Some I could see coming and some blind sighted me.  Some were aimed directly at me.  Her memory continues to fail her and her mis-remembering is getting worse, probably exacerbated by the stress.  I let it go as much as I can but sometimes she gets things wrong and sometimes those things have serious consequences.  She expects to be the primary point of contact for all of Dad’s appointments, doctor contact, information, etc., as she always has.  She carried the paperwork Mayo sent ahead of time in her hands the whole time we were there and was reluctant to let me look at it; I had to gently coerce her every time.  She is trying to control the situation and sometimes sees me as a threat, as if I’m trying to take over at her expense, as if I’m out to get her.  I see what’s coming and I know I can’t stop it.  I don’t know how to make her life easier in a way that she would accept.  I don’t know how to comfort her; I don’t know if that’s possible.  She has been in charge for so long, dealing with so much that she is unwilling to let go or accept help until the house is almost burnt to the ground.  Her reign as an effective matriarch is crumbling and she is fighting it, tooth and nail.  She was surprised at how overwhelmed she was at Mayo and finally recognized that she couldn’t do this on her own, their own.  But that doesn’t mean she’s going to like it!  Or make it easy for anyone to help them navigate this or anything else.  I’ve accepted the fact that in the interest of keeping them safe and on track, I am going to make her very mad fairly often.  Again, I hate that but I don’t know a better way to handle it.  I know it will never get easier.  Managing this situation is not as “simple” as figuring out and getting Dad what he needs.  I’m trying to keep them safe, happy and healthy.  Trying being the operative word.  It is impossible.

I have two brothers.  One has been a paraplegic for 25 years.  For those years, much care, concern and energy has gone into him.  His degree of need has increased with his age and his health issues and Mom has largely been the person to pick up the slack, pick up the pieces and get him whatever he needed on a daily basis.  That has not changed with Dad’s diagnoses.  The same amount of energy is still going into him, sometimes more.  It is no wonder my mother is frazzled, it is a wonder she is not in a rubber room with a straight jacket.  My other brother has tried to obtain different care and explore options for them but to say that is a challenge, in every direction, would be an understatement.

My other bother and I see the world through very different lenses and our relationship has always been strained at best.  (Dad occasionally marvels at how he got three VERY different children.)  He’s trying to research related topics and at times, insert himself into the process of caring for Dad.  I think he’s mostly recognized that he’s in over his head with much of the information and is often deferring to me.  He is a smart, resourceful guy but this is not his area of expertise.  For better or worse, it is mine.  I know the terminology, the procedures, the hospitals and clinics.  I’ve been working on my advanced degree in cancer, along with all things health, performance and nutrition related for 11 years.  I understand what the doctors are conveying and I can read my Dad’s reactions and usually I can fill in the blanks for both.  I’ve talked with my parents about letting me run with any appointments I can go to and having my brother fill in the gaps since I am the only one in the family that’s working, the only one that needs to schedule around a job and of course, my own treatments.  They agree that’s an OK approach when they’re with me but they are not good at standing up to my brother.  We’ll see how this goes.  There is potential for explosions everywhere.  Minefields abound!  I’m trying not to lose a limb.

The most poignant moment of the trip came in the waiting room on Tuesday morning.  Dad spied a man sitting across from us and could read his hat and jacket that stated he was also a Korean War veteran.  Since I was sitting closest to the man, I said hello and asked him when he served.  We had a brief conversation and then Dad moved to sit by him.  They immediately talked like they’d known each other their whole lives and had many things in common.  I struggled to keep it together.  There was a lot of courage, spirit, honor and quiet dignity occupying those two chairs.  They are rare and quickly becoming extinct.  When Dad got called to see the doctor, I went over to thank the man for his service, shake his hand and ask his name. Dean Ernst.  He looked frail sitting in the chair but he popped up like he was a spry 20 year old and grabbed my hand with a firm grip.  We wished each other the best and parted ways.

 

2015-03-19 09.51.39 copy

 

To be continued…

 

Short Update On A Long Day

After being off work for 6 months, I returned today. I was welcomed back with smiles, flowers, questions and over 5000 unread emails. I spent the morning on the phone with various help desks trying to get my work life reactivated and chatting with the few people who realized I’d snuck in under the radar. I’ve had a lot of questions about if or when I’d return to work. The bottom line is it costs a lot of money to stay alive. For now, I’m working.

I left at lunch to go to my dad’s follow up appointment at the urologist. He had surgery to remove a cancerous tumor from his bladder 10 days ago. The doctor informed us today it was invasive and aggressive and recommended we go to Mayo Clinic. Dad’s options are one of two extensive, invasive surgeries or a combination of chemotherapy and radiation. The PET scan is up next and will give us a better idea of the extent of the cancer. He’s had increasing pain in his hip and now walks either with a cane or crutches and we’re concerned his previous prostate or lung cancer, or now his bladder cancer, has metastasized.

I left his appointment and went across the street for my own labs, doctor appointment and chemo. I left with 4 more holes in me than when I went in and went back to work for the remainder of the evening.

How am I? I’m hanging in there. I want to see the PET scan. I’m concerned about my lack of paid time off. I haven’t accrued any while being off work and want to be able to be with my dad for whatever comes next. I’m trying not to get ahead of myself and the facts. Day by day and sometimes moment by moment.

What am I grateful for? My dad’s doctor knows the limits of his expertise. I feel good enough to navigate this with him. Spring is around the corner which means more daylight and better weather conditions for his travel to appointments.

Today I got to see both of my parents and spend a bit of time with them. Today I got to look into both of their eyes and hear their voices. Today we’re all still kicking.

Thanks for checking in, thanks for reading. Much love from me to you.