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.
To be continued…