sarahsbeingfrank

And THEN I Stole A Wheelchair…The Saga of Mom And Dad

Mom had knee replacement Monday, August 24th.  The expectation was that she would be in the hospital until Wednesday and then go home.  She stayed until Thursday and then PT recommended she go to a skilled care facility due to…a few reasons.  She’s quite strong-willed and when you couple that with cognition issues, going home to a very stressful and demanding home life, attempting to manage and care for a paraplegic son and an 84 year old husband with his own health issues is not a good situation.  Recipe for disaster, actually.  I agreed.  Dad agreed.

I scrambled to find a suitable place in under 24 hours.  Thank goodness Jana was able to recommend The Life Center and it had an opening.  Telling Mom where she was going and why went exactly as you’d probably expect.  She was not happy.  But, it was for the good of all involved, especially her.

Dad stayed with me while Mom was in the hospital.  It was one-on-one time together that is rare for us.  I made him tea and breakfast every morning.  He read the paper while I worked.  We talked over dinner about the things that we scarcely have the chance to.  I put the dishes away out of the dishwasher while he was watching the news and realized something was missing.  There was an empty space where a wine glass should be.  I looked around the kitchen, then in the dining room and even in the living room.  Nothing.  Was I finally losing my mind?  It was no where to be found.  When I walked into the bathroom, there it was, on the back of the toilet.  Dad had been using it as a mouth rinser-outer when he brushed his teeth.  Sounds about right.

Mom and Dad have been married for 55 years and held traditional roles, divided duties.  There are many things around the house that only one of them would do and Dad encountered a few of the ones that had never been on his list after he returned home and Mom was away.  Such as the washing machine.  And the thermostat.

Dad:  Sarah, where is Mom’s purse?

Me:  I don’t know Dad.  Have you checked all of her usual spots, doorknobs, clothes hamper, etc.?

Dad:  Sarah, where is the checkbook?

Me:  Probably in Mom’s purse.

Two weeks of daily physical and occupational therapy along with speech therapy (works with memory) a couple of times a week was good for Mom even if she didn’t like it.  For the first time in a long time, she was not in charge and she was NOT pleased.  I tried to ease the transition and usually visited 2 or 3 times a day, bringing her things she asked for and doing her laundry daily.  She had a busy schedule and she adapted after a few days but only under the circumstances that after two weeks, she was going HOME.

How a person in a situation such as this likes the food can make a big difference.  Most of the time it was OK and she didn’t hesitate to let me know when something wasn’t up to her standards.

Day 1

Mom:  This iced tea is terrible.

Day 2

Mom:  This iced tea is the worst I’ve ever had.

Me:  Well, don’t drink it.  You have other things to drink.

Day 3

Mom:  I’ve never had such awful iced tea.

Me:  *takes saran wrap off the top of the glass and sniffs the contents*  That’s because it’s prune juice, Mom.

After a week or so, PT pulled me aside and asked about home again.  After painting them a picture of what she deals with on a daily basis and her known memory issues, they recommended that she go to transitional care such as assisted living for an additional 30 days after she left.  Oh boy.

I talked with Dad about moving her to assisted living for a short period of time and despite paying the out of pocket cost, we both decided it was well worth it even if Mom hated it.

Dad:  Who makes this decision?

Me:  We do.  At this point we have to decide what’s best for her and if we don’t take her home, she’s not going anywhere.

We needed to give her knee a chance to heal enough that it wouldn’t be critical if she couldn’t remember all of tasks and movements they were teaching her to keep her safe.  We needed to keep her in a controlled, non-stressful environment that could help her heal for the time being.

This conversation was even more excrutiating than the last.  She insisted she was going HOME.  I’ve never seen her in such a state of mind and it was gut-wrenching for Dad and me.  But it was decided.

The Friday before Labor Day at 5:00 PM I started my frantic search for an assisted living facility that would suit our needs and hopefully Mom would enjoy.  I settled on 3801 Grand and asked them if they could accommodate her for 15 days.  I think 30 might have completely pushed Mom over the edge and her knee was doing quite well.  Actually, all of her was doing quite well.  We kept the stress to a minimum and didn’t involve her in the daily goings-on of home and it seemed that at times, her memory improved.

We moved her into her bright, cheery new short-term digs and she settled in.  I kept up my 2-3 times a day visits and she adjusted quite well.  They have a very nice facility that suited her; lots of windows, old trees and plenty of activity to watch or participate in.  She usually liked the food but really enjoyed the dining room, it’s view and the people she sat with.  She had more freedom and could walk outside and loved looking at the buildings and homes near her.  She became as calm, peaceful and stress-free as I’d seen her in decades.  Her memory was as good as I’d seen it for many years and even some of her old personality that had been shoved in a far corner was re-emerging along with her sense of humor.  We spent a lot of time walking, sitting on the patio and just enjoying each other.  I am so grateful for those days.

My decision to have her stay 15 days, until September 25th, was not random.  Dad had all of his follow up appointments at Mayo on September 24th.  We decided that it would be best if just the two of us even though Mom would not be happy.  I didn’t bring the appointments up but she remembered a day or two before we left.  She grumbled but she accepted that we were going without her.

Dad and I took off after work on the 23rd.  It rained as it always seems to on our drives up.  We checked into our hotel, unloaded and then headed down to the Co-Op to grab him a bite to eat.

His hip has been bothering him more than normal for the last month or two.  He was having some pretty serious pain around his IT band and we were getting desperate.  Nobody seemed to be able to do anything for him.  Cindy had taken mercy on us and used her massage therapy skills on him to see if she could alleviate some of his distress.  And it worked!  Not completely but it improved.  I tried working on him in the same fashion every time he came up to visit Mom.  It seemed to help.

BUT….

After Dad and I got back to the hotel, checked out the game room, drove some race cars, the air hockey game was still broke, we headed back to our room.

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We were both spent.  I went in the bathroom to wash my face.  The next thing I heard dropped my heart to the floor.

Dad was yelling, gasping in severe pain.  I sprinted back to him.  He was still sitting on the edge of his bed but in serious distress.  In a split second I looked him over but could see nothing that would lead me to the source of his pain.

Me: I’m calling 911.

Dad, crumpled red face:  No, it’s my hip.

What?  He was in the same place I had left him less than a minute before.

Me:  What did you do?  What happened?

After giving him a couple of minutes, the pain started to subside and he could talk.  He had taken his left shoe off and then put his left foot behind his right to push off his right shoe at the heel.  That’s when something in his right hip snapped.  I suggested going to the ER but he said he was feeling better.  I repeatedly looked him over because I wasn’t trusting his words at this point.  He did seem to be relaxing so I was inclined to let him stay with me in the room and see how he felt in the morning.  We really needed to get through his urology follow up appointments, we were two months overdue, and we’d arranged many things around making them happen.

The next morning he tried to convince me he was better but I wasn’t completely buying it.  He wanted to go down for breakfast on his own but I went down with him.

We made it to the first two appointments without much hassle.  There was quite a bit of walking in between and it was slow-going but we managed.

The third appointment was a urogram and chest CT.  I waited with him until they called his name and then took off to check out of the hotel when he disappeared with the nurse.  I came back an hour later and she was pushing him into the waiting room in a wheelchair.

Me: What happened??

Nurse: He went down in a chair.

Dad:  My leg gave out and I just kind of…went down.

Me, looking at Nurse:  Now what do I do with him?

Nurse:  Blank stare, shoulder shrug.

Me:  We need an X-ray, how do we arrange that?

Nurse:  Get the doctor he’s here to see to order one or take him to the ER at the other hospital.

I looked at him in the wheelchair.  He wasn’t getting up.  I got behind him and away we went to beg his urology surgeon to order an immediate X-ray that had nothing to do with his follow up visits.

After a very confusing conversation for the urologist’s nurse, she got it scheduled for right after lunch.  I pushed Dad down to the cafeteria, parked him at a wheelchair accessible table and went through the line to get us some food.

We headed to X-ray as soon as we were done and they took him in almost immediately.  Getting him prepped…..was a challenge.  He was already in discomfort and this was just going to make it worse.  His right leg was fairly useless and painful if he tried to move it.  I stayed with him the whole time, even when they were taking the X-rays.  I was not leaving him again.  The tech just threw an apron over me.

We headed up to meet with his urologist after we got him dressed and back in the chair.  Nothing was happening fast except me pushing him around once he was settled in the wheelchair.

Emily, one of the urology team members met with us first.  She read the X-ray report which was already done.  It confirmed a displaced avulsion fracture.  I was relieved and concerned at the same time.  At least we knew what was wrong.  But what do we do about it?  I asked Emily to request an ortho consult while were there and she did although they would not squeeze him into their schedule the same day.

Onto the reason we were there.  We reviewed the CT with Emily.  It showed a new mass that was not there during the last scan and it’s in the same spot the cancerous bladder resided.  Sigh.

Dr. Thompson, the head surgeon came in and we walked through the scan with him.  He recommended a biopsy to see exactly what we’re dealing with.

Dr. Thompson:  Well, you can’t outlive everything.

They couldn’t do the biopsy the same day but they were able to squeeze it into the schedule the next day.  Once we were resigned to staying another night, I realized I didn’t know what I was going to do with Dad.  He couldn’t walk.  He didn’t have crutches.  I wasn’t sure how to get him back to the hotel for which I no longer had a reservation.  It was 4:50 and the clinic pharmacy closed at 5:00.

Me: Dad, hold on.

We were off and rolling, intent to get to the pharmacy before it closed to get him some crutches.  We made it in as they were turning off the lights but managed to buy a pair at the last register open.  Now what?  I called the hotel and their shuttle could accommodate a wheelchair so we told them to pick us up.  Stealing a wheelchair, it is.  I rolled him into the room and parked him between the beds and told him he was to stay put.  I was concerned about him falling or causing himself pain that I couldn’t alleviate.

The next morning I was also concerned about the biopsy causing him pain due to the precarious spot they would be sampling.  Joel, our RN was great; patient, thorough and appreciated our sense of humor.  Joel and the two techs let me stay with Dad while they prepped him and we chatted about everything and nothing.  They were very careful with him and respected his fragile state.

Me:  Dad, they said I could run the saw.

Tech:  I don’t think we’re going to need a saw for this.

Me:  OK, maybe next time.

When the procedure was complete, I rolled Dad out to a nice sunny spot in front of the building, locked his brakes and took off to retrieve the car.  Time was of the essence.  I wasn’t sure what to do with Dad, if he should be in a hospital or if he was OK to be out and about with the rest of the world.  I had done some research on the type of fracture he had and it sounded like it could go either way.  I was hoping to get him back to Des Moines and into his own orthopedic surgeon before his office closed for the weekend.  It didn’t happen.  We were about 30 minutes past when they would see him.  I made Dad a deal that if he wasn’t in pain and he didn’t do anything stupid, I wouldn’t take him to the ER and we’d cross our fingers until the ortho could see him on Tuesday.

After much conversation, we decided to pick up Mom.   It was the day she was expected to go home and we decided I would take them both to their house in Oskaloosa and I would stay with them, as I had already planned on doing.  I just wasn’t planning on two people gimping around.

Mom felt good on Saturday and completely overdid it.  She is still paying for it, more pain than she was prepared to handle.  Both of them are on crutches.  Neither of them can drive.  Sarah’s Assisted Living is now open but already at capacity.  Duties include but aren’t limited to cooking, driving, sock and shoe put ‘er on ‘er, drug manager, toenail trimmer, hair cutter, laundry doer, grocery getter, leg massager, walk accomplice and repeated question answer-er.

I’m working from their house and it’s gone OK with the exception of the train that runs daily that is just a few short blocks away.  I’m sure the conductor is getting paid by the horn blow.  It makes for interesting conference calls.

Their house is the one I grew up in and the only place they’ve lived since I’ve existed.  They lived for 10 years across the street before that.  The town, the neighborhood feels very small to me; at times weirdly familiar like time has stopped, at times like I’m a stranger in my own land, at times comforting, at times suffocating.

Tuesday we made it to the ortho office, both of my folks on crutches.  We get a lot of WTF looks, even in the waiting room.  The ortho explained that the tendon on the inside of Dad’s hip pulled off the bone.  That spot had deteriorated and snapped apart when Dad put pressure on it.  He’s supposed to continue to take it easy, use both crutches and I’m pretty sure he also said not to do anything stupid. I packed them both in the car ever so slowly and we were off.

I knew we’d get biopsy results by Wednesday but I wasn’t in a hurry.  I knew it would be a game changer.

Mom, Dad and I were going for a walk around the block when the cell phone in Dad’s shirt pocket rang.  I pulled it out and looked at the number calling.  Mayo.  Sigh.  Here we go.

Emily asked if now was a good time to go over results.  She confirmed that it was a recurrence, that the mass consisted of the same bladder cancer cells that ruined his bladder and caused him so much pain and overall distress earlier this year.  Surgery is not an option.  Radiation is not an option.  They set up an appointment with medical oncology to review what, if any, options there are for chemotherapy.  I thanked her for her time and hung up.  We were still a block from home.  Our slow little handicapped train made it up the driveway before I shared the news.  Dad slumped on his crutches.

We went inside and I attempted to explain what I knew, what would happen in the short term and repeated that nothing was going to be decided tonight.

For now, we’re taking care of the immediate needs, the day-to-day stuff.  That’s all we can do.  That’s all I can handle, at least for now.

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Med City….Aaand Back To Me

I left on Sunday wearing a tank top and shorts with the air conditioner on in my car since it was 80+ degrees. I decided weeks ago that I wasn’t going to tell anyone when my appointment was and that I would go alone. I wanted the opportunity to digest whatever was unveiled before anyone else knew or expected an update from me. I wanted my own time to process. By the time I reached Rochester 2 hours and 40 minutes later (not a PR but probably top 3), the temperature had dropped 14 degrees. It made for an invigorating stop at the gas station. The next morning the temperature at 5 am was 42 degrees and dropping with a wind chill factor of 32 degrees and 25-30 mph sustained winds. I was going to hoof it the 8 or so blocks down to the Charlton Building but I decided to take the shuttle. Besides it was still dark and I’m afraid of the dark.

My view from the hotel room Sunday night.

cloudy sunset

I was the only one walking around in the Charlton at 5:30 am looking for Desk One until I surprised a gaggle of electricians loudly debating something obviously very important by the elevators and stunned them into silence. I wandered into Desk One’s empty waiting room and read the sign that says they open at 5:45 and to ring the bell for a technician. It was 5:35. So I rang the bell. I grabbed a sign in sheet, filled it out and sat down. At promptly 5:45, a guy in scrubs and a lab coat wandered out and asked if there was anyone named Sarah Russell here. I looked around at the large, empty room and looked back at him. I guess that’s me.

Joe was a friendly guy, one of two that do this, and quite skilled and efficient at his job. Blood glucose check first, IV second. He had no problem sticking me and I barely had time to wince. He took me to the machine that administers the exact dose, sat me down and hooked me to it. You can see the percentage of the FDG (radioactive glucose) being administered on a graph until it’s done and all of it has transferred into me. He unhooked me and I returned to my industrial, extra wide recliner. I know the drill. It’s dark and you’re quiet for 45-50 minutes. He covered me up with a warm blanket and pulled the thick curtain. It blocked much of the light but I could still hear everything. I was the first patient of 60 today or Number 1 as I kept referring to myself.  Sometimes they get up to 80. They run a tight ship.

I could hear the woman next to me who’s in her 70s explaining that she is to have surgery tomorrow and is currently undergoing dialysis. She got sick while waiting for her radioactive tracer to reach the far corners of her insides but the tech explained that it probably wasn’t the cause of the nausea. There was a cheerful 70 something man that had to be told to put his solitaire game away.  No stimulation!  Then there was a younger voice. I listened carefully for him to repeat his birthday as we all have to do. He’s 24 and had driven down from St. Paul that morning. I assume most people come in for PET scans for only one reason.

After I had given the tracer ample time to marinade inside me and the cancer enough time to greedily eat it up, we walked to the machine that would scan my innards and provide a glimpse of what was going on in there. I took off my belt and emptied my pockets. I laid down and put my hands above my head. I stayed in that position for about 20 minutes as they slowly slid me through and took pictures. Then I got up, gathered my stuff and scrammed. It was 7:15. I had hours to wait for my afternoon appointments with my medical oncologists and orthopedic surgical oncologists.

I returned to the Gonda Building a good hour early for my first afternoon appointment because I had to check out of the hotel. I always eyeball the people I encounter and try to diagnose their maladies. Some people look normal. Some look quite ill in a variety of ways. I made my way to my old stomping grounds on the 10th floor and got comfortable near the windows. The waiting room was full, bustling. It’s an interesting cross section of the human race. The big guy in the leather coat with a full head of flowing, curly white hair and a sucker in his mouth. The parents there with their children. The adult children there with their parents. A few being pushed in wheelchairs. A few with hats or wigs. A few proudly f-you bald. A few that are obviously new here and quite uncomfortable. A construction worker that had come straight from work, still wearing his dusty clothes and a terrified expression. We all have a common denominator.  The ethnic diversity is also more interesting than you’d normally find in rural Minnesota. Some look like they drove in from the farm down the road, others like they flew in from the other side of the earth.

I sit. I wait. I study. I stand, walk and try to unhinge my stiff hip. I watch the window washers on the building across the street. I understand that a critical part of my immediate future is about to be revealed. But I don’t think about it. I know I can’t change what the scan shows, at least not in this moment. I have a list of questions to talk about with both sets of doctors. I am not nervous or anxious. I am quite calm and have been for a week or so. Once my dad was through surgery and safely home, I turned a bit of my attention back to myself. I know the chances of the drug I’m on working indefinitely is about the same as winning the lottery. I know that current conventional therapies do not hold a cure for me. I’ve been exploring a Plan B and I’ve started to bring it into focus in the last few weeks. More to come regarding that. In the meantime, I’m peaceful.

We get right to the point with my first appointment and pull up the PET scan. “It looks good.” I got off the couch next to the desk and crouched next to the doctor so I could have a clear view. My initial glance saw nothing lighting up that shouldn’t. We pulled up the written report to see if the radiologist agreed.

Continued positive response to treatment. No obvious new metastatic disease. The numerous sclerotic lesions throughout the skeleton demonstrate no significant FDG uptake.

He agreed.

I decided to spruce up the scan because I’m fancy like that.

PET Scan

I was not surprised and again, not relieved. I just felt the same. This is excellent news and the best report I could get but I think my intuition was already tuned into it before I saw the results. I still have incurable cancer. That has not changed. We discussed my questions and then got the to fun part, the exam. They like to run their hands and eyes all over me and I’m used to it. I told them that the last time I went to the dentist, I started to unbutton my shirt because for a split second, I forgot which doctor I was visiting. Habit, I guess.

The medical oncologists left and sent in the orthopedic surgical oncologists. The first one reminded me of a Samoan Superman impeccably dressed in an expensive, well-tailored suit. We discussed the basics, the inflammation around my hip and then in came Dr. Sim, the big cheese, and a visiting doctor from Japan. We looked at my PET again and then the Japanese doctor provided a guess at my diagnosis from the initial x-ray taken in July. He got it right. Then he giggled and bowed.  They said he always gets it right, even the most puzzling of puzzles.  Dr. Sim continues to be pleased with me and the results.  I asked him if there was anything I shouldn’t be doing and he told me not to jump out of the back of any pick up trucks.  Maybe he knows me better than I think!

Another exam and discussion of the continued pain in my hip. They diagnosed me with troch bursitis and we all agreed to a steroid injection. I’ve been enduring pain in my hip when I engage a certain range of motion but waiting to see if it subsided. It hasn’t and my compensation for it is increasing.

Dr. Sim: Dr. A, do you want to inject Sarah?

Dr. A, aka Dr. Superman:  Oh, yes I do.

Me:  *snicker*

I got dressed and went up to the 14th floor, got some fast x-rays and then they prepared me for the injection. I laid on my left side and the nurse put one hand on my right shoulder and grabbed my left hand with the other. That’s weird. Is she trying to comfort me or hold me down? I found out when the large gauge needle made it into the bursa which felt like someone sticking a blow torch into a bundle of raw nerves. My leg started to spasm and she tightened her grip. “Holy shit!” I said as I laughed which caused my leg to shake even more. And then it was over. “Well, we’ve never had anyone laugh when we injected them.”  The nurse said after 4 hours it would start to hurt. Um, it hurts right now. It was painful enough that I couldn’t hide a limp. I gimped all the way back to the hotel thinking it would work out the pain but it didn’t. Even today, it’s sore and I’m still limping. I’m not sure what to expect but fingers crossed it improves. It will get a true test drive when I push the mower later today.

I was in bed 45 minutes after arriving home last night. I was cooked.  For the next 6 months, I’ll focus on being healthy and happy and taking care of my parents. Next up, Mom’s appointment with the orthopedic surgeon this afternoon. Never a dull moment!

Driving home.  Not a PR.  Too much road construction.

driving home

Random afterthoughts….

Their high-tech pain scale.  I guess number 10’s helmet is too tight.  Also, I think I’m funny.

Pain Scale

A few of the people that heard Troy was making ribs on Saturday.

Troy's Ribs

Out with my O-Town ladies on Friday.

Otown ladies

Thanks for reading.  Thanks for caring.  Thanks for laughing with me and at times, at me.  My gratitude continues.

 

Surgery And Beyond

On April 19th, Mom, Dad and I headed back to Mayo for Dad’s surgery the next morning.  It was a driving wind and rainstorm as it had been the last two times.  At least it wasn’t snow.  We checked into a different hotel, this one right across the street from the hospital where Dad would have his surgery in the morning, St. Mary’s.  It looks old, huge and very….religious inside and out.  Mom and I tried to determine how long and wide it was but never decided on a definitive answer.  Maybe 4 city blocks long and almost as wide.

Our view from the hotel.  I beat a path back and forth.

St. Mary's

Our evening was uneventful and we tried to explore a little bit around the hotel to stretch our legs and forget why we were there.  Then began the routine of pre-surgery; me setting multiple alarms ridiculously early for my folks, identifying what we should take and what we shouldn’t, arguing about what we should take and what we shouldn’t, trying to wind down and get some sleep.  I got a couple of hours which started my week of running on mostly adrenaline.

We’d been told that best case scenario was a 4 hour surgery but could be 6+.  There were numerous complications that could happen and under the circumstances, the surgeons and their team were prepared for as many as were feasible.  Normally they have at least one other surgical case on surgery days but in this instance, they said they didn’t want anyone else on the calendar, he was their sole project.  They expected bad things.  They were not happy about performing this surgery.

Mom and I passed the time by wandering around the halls, looking at the art, reading about the history and getting sent from waiting room to waiting room to waiting room.  Her knee bothers her and this is a big place.  It didn’t take long for me to commandeer one of the many wheelchairs sitting by the doors and she willingly hopped in.  We were a force!  I maneuvered that thing like my life depended on it, always at full tilt which she didn’t seem to mind….unless she thought I was tailgating.  Then she’d raise her hand, I’d pass and we’d be off, racing again, always looking to pass the next group of folks.  On your left!

At the 4 hour mark, we got the call to head to yet another waiting room to talk to the head surgeon.  He gave us a brief rundown of the surgery and asked if we had questions.  I did.

Me:  4 hours was best case scenario and it’s now 4 hours.  Can I take it that everything you just explained was the surgery going well?

Dr.: Yes.

Me:  On a scale from 1-10, how would you rate how the surgery went?

Dr.: 10.

They did not want him under anesthesia any longer than he had to be.  They even had pathology in the operating room with them so they could determine clean margins and look at the lymph nodes on the spot and not have to send them to the lab and then wait to continue surgery if the margins and the lymph nodes were not clear.  But they were.  And nothing disintegrated when it was touched by the scalpel as feared and the amount of blood loss was normal.  I was slightly relieved but I knew he wasn’t out of the woods yet.  This was one step, a BIG step, in a much longer process but there were….are…many things that can jump up and get him.  Blood clots, infections, the unknown.

More waiting, more moving from room to room, building to building within the hospital.  Everything in there is Catholic.  The “buildings” within St. Mary’s are all named after saints.  Lots of statues, lots of stained glass, lots of marble.  It was old but built to stand the test of time and had quite well, at least structurally. The maze of hallways could be confusing to even those familiar with the grounds.  It is a fortress.

We finally got word that he was in a room in ICU and we could see him.  I can be rather stoic in these types of situations but when I laid eyes on him in that bed, I became choked with emotion.  I could see his vitals registering on the monitor, I could see him breathing, I could see him.  And all things considered, he was OK.  Regardless of what the surgeon had told me, it wasn’t until I could see him for myself that I believed that he was OK.  Well, as OK as you can be after having your belly cut open, some parts removed, some parts rearranged, some new parts added and then stitched back up.

I had my work laptop with me and settled into a chair on the left side of his bed where he was in my line of sight.  I had no intention of going anywhere for quite a while.  About 10 minutes into answering emails, the nurse who was standing in between Dad and me started retching on the floor.  She was bent over, hacking, gagging and retching.  I was confused.  Wasn’t my Dad the one that needed to be cared for?  The second ICU nurse walked in and asked what happened.  In between gags, Nurse 1 managed to get out that she’d been hit in the mouth.  Nurse 2 shooed Nurse 1 away and told her to get cleaned up and do the paperwork.  The surgical drain bulb had gotten so full it had become pressurized and when Nurse 1 stuck a needle in it to drain it, it popped and squirted right into her mouth!

Mom and I eventually retreated to our hotel room after I wrote my phone number on his white board and felt satisfied that we could leave him until morning.  I pushed her as far as I could in the wheelchair and then she had to slowly walk across the street and into the hotel.  She wasn’t feeling the best.  Turns out, she had food poisoning.  Neither of us got much sleep THAT night.

The next morning, after Cardiology was satisfied with the close monitoring of Dad’s heart, they sent him to a regular room the next day.  They even had him up and walking.  I was amazed.  Considering everything he’d undergone in the last 24 hours, he was moving like a champ.

Dad Walking Day 2

I hadn’t told many people when he was having surgery or even which hospital at Mayo but Nurse Jill, Other Sarah and Other Jill managed to figure it out and had some gorgeous flowers delivered to him.  We were all surprised and quite touched.  I don’t make it easy for people to be nice to me a lot of the time.  Those that manage to get in these little gestures have to really work for them.  I think Dad was really surprised that MY friends would bother to do that for him.  When deciding where to put them, he insisted on having them in his line of sight which was right below the TV.  If you know my Dad, you know he doesn’t insist on much.  He even said he’d share them with me….I could look at them, too!

Did I mention that Kev was mowing for me while I was gone?  Yeah, sometimes I just need to let people help me.  I think my parents are seeing what I’ve gone through, how I’ve been able to get by with help from my friends and they are a *tiny* bit better about accepting help.  They let someone get their mail and move their trash cans which is a first.  I’m getting better at it.  But I never have to like it!

By Day 2, Dad was looking almost perky.  I couldn’t believe it.  When Dr. Psutka came in, Dad asked her when the doctor was going to stop by.  I about jumped out of my chair.

Me: Dad, Dr. Psutka is a doctor and one of your very skilled surgeons.

I knew he thought that because she was a female, that she was a nurse.

Dad: Ok, well, yes, I know.  I meant, when is the other doctor coming to see me?

Dr. Psutka:  Well, Mr. Russell, you are primarily in my care, you are my problem, she said with a sly grin.  You know what, I think we better schedule a suppository for you tomorrow.

He NEVER forgot that she was a doctor or a surgeon from that point on.

Dr. Psutka said they were incredibly pleased with how he was doing but usually by Day 3, problems start to surface so we continued to keep our relief tempered.

Day 3 came and went and he continued to improve and get stronger.  PT and OT came in for visits and Dad was upping his number of walks every day.  To say he was motivated to get home was an understatement.

Both surgeons, Dr. Thompson, the Attending, and Dr. Psutka, the Resident were matter of fact but Dr. Thompson was borderline grim in our encounters.  He had yet to smile at anything which is pretty hard to do if you spend enough time with Dad.  On Day 4, I was standing in the doorway of Dad’s room when both surgeons walked by, both with big grins.

Dr. Thompson:  He’s doing GREAT!

Me:  I know!  You guys are amazing.

Everything continued to go well.  He even ditched the walker and hoofed it up a flight of stairs on his own.  Dr. Psutka said they had grave reservations about doing this but recognized that he didn’t have any other options.  Dad asked if he was the oldest person they’d ever performed this procedure on and she said yes, by several years.  She then said that he was doing better than the average patient and we decided that he should go home on Saturday which just happened to be his 84th birthday.  I told him that my present and the only thing I was getting him was a ride home, an escape out of this place.  He thought that was pretty good.  He was ready to roll.

Dad had been in fairly severe pain for at least a month leading up to surgery.  His kidney felt like it had a knife in it and that pain never subsided.  The cancerous tumor that had been cut out at the end of February had grown back so fast that it was pushing into his right kidney and keeping it from draining.  When I questioned him about how he was really feeling, if he was truly ready to go home he told me that he was in less pain now than he was before surgery.  He looked me in the eyes and said “I was ready to die.”

He’s been home now for a couple of weeks and is adjusting.  He has a whole new set of challenges to which he’s adapting.  It’s a lot for him and for mom to handle.  Insurance is confusing.  Supplies are costly.  But these are the prices we pay for best case scenario.  We’ll take it.  I talked to Mom today and she was livid because she just caught him on a ladder cleaning out the gutters.  We have some work to do on asking for and accepting help.

How am I doing?

Better now.  I was completely wiped out for most of the week following surgery.  Drained.  I couldn’t even talk myself into a bike ride.  There were a couple of days that I really had to talk myself into getting out of bed although I knew I didn’t have much of a choice.  But, I’ve recovered and I’m operating at whatever my full speed is these days.  I’ve been able to do some 40 and 50 mile bike rides since then which has helped me to get my head on straight again.  All things considered, I’m feeling damn good.

Me, recently:

Hula Hoop competition at Other Sarah’s daughter’s bat mitzvah.

Hula Queen

Changing Jana’s flat on our bike ride.

Flat!

A few random tidbits:

Lots of hospitals in the US have a religious affiliation.

Overheard while walking the halls – “Are you pooping?  WELL, ARE YOU??”

Overheard in the elevator – “Funeral food is the best!”  “Oh, I know.  I wish I could go to one every week.”

The Bruce Jenner interview was on in Dad’s room the last night he was in the hospital.  We watched some of it from his room and then Mom and I went back to the hotel where she wanted to watch the remainder.  She and Dad are from an older generation and in many ways very sheltered by their small town life.  They tend to approach these situations with very elementary curiosity and questions.  This was something completely new to her and she had many questions.  Let’s just say I had a LOT of explaining to do.  Repeated explaining.  Wow.

Getting some fresh air and sunshine in the atrium during the 5 minutes it didn’t rain while we were there.

Atrium

And feeling like I’m being watched…

Being Watched

Meditation and Prayer Room

Meditation and Prayer Room

Dad and his surgeons, top row, 4th and 6th from the left.

Dad and his surgeons

The entryway I passed through multiple times a day.

Entryway

Uphill, unassisted and going home!  Happy Birthday!

Going Home

Mayo Redux 3.0: Sitting And Stories

As we waited for the Radiation Oncologist to join us in the small exam room and give us his two cents, I pulled up an article from the internet to share with my folks to pass the time and divert our thoughts.  It was the 41st anniversary of the Blizzard of ’73.  April 8th and 9th was being remembered by those in Southeast Iowa who had lived it.  The article was a firsthand account by someone from Centerville and asked for people to leave their own accounts in the comments.  The fourth comment was from a woman detailing how her father left Oskaloosa on Highway 163 for his job at Pella Corporation but never made it.  He was found frozen in the snow the next day.  As I read the comment aloud, I watched my dad carefully.  His mouth opened and his brow furrowed as what I said registered with him.  He was the one who had found that man in the snow, frozen to death, the next morning.

Everyone left for work at their normal time, around 6 am.  It was like a caravan every day, hundreds of people making their way to the factory.  You knew the cars and the people in them, all going to the same place at the same time.  It was snowing when they left and it didn’t get worrisome, well…until they got stuck.  The snow didn’t seem cause for alarm when they departed for their 16 mile commute but that changed fast. Dad had 4 riders with him, as he usually did, and they were intent on getting to work, being there on time and keeping their perfect attendance records intact. This was amazingly important, life-riskingly important, evidently.  Dad recognized the man in the car ahead of him, Stanley, and he’d gotten stuck behind him in the snow one other time on this narrow, tight, sometimes steep two-lane rural highway.  When Dad would come across something precarious in the road such as drifting snow, running water, etc., he would gun it, demanding all power from the engine, and blow through whatever was in his path.  He knew Stanley would slow down.  And he did.  And they got stuck, only a few miles from work, outside of Pella.

They waited in the car for a while. “I was sure a plow would come by. It didn’t.” He intermittently let the car run to warm them up but the snow was getting deeper and he knew they were going to have to keep the motor off so they wouldn’t asphixiate themselves as the snow began to completely envelope the car. The five of them sat in the car about 3 hours before they decided to risk walking in the blizzard.  In that time, the snow went from about 12 inches surrounding the car to 2 feet OVER THE TOP of the car, over the roof.  Dad was responsible for those he carried with him to work every day and he felt it.  He rolled down his window and tunneled out to the top of the snow, several feet straight up.  Everyone else followed. They crossed to the south side of the road, to the fence line where the snow was only about a foot deep. They followed the fence line until they could see a house on the other side of the road.  They crossed back over the highway where the snow was drifting 7 to 8 feet deep and slowly fought their way to the house in the blinding, skin-burning snow.

They knocked on the door.  The owner, a woman, answered and there were already 6 stranded people occupying the house with her. She had just had a baby but the baby was still in the hospital. Her husband had left for work and she was alone…with the exception of all the strangers that she had welcomed into her home with no hesitation.  She cooked them what she had for food and they slept wherever there was space, my dad on the floor.  They were grateful for 4 walls, heat and electricity.

Dad went back out the next morning to look for his car. What he found not 40 yards from the house still brings tears to his eyes; a man frozen to death in the snow. He knew he was dead when he saw him.  He knew there was nothing he could do.  He went back to the house and they called the authorities who sent someone out on a snowmobile pulling a cart. As they freed him from the snow, Dad recognized the man from work, Mr. Johnson. They dug him out, secured him in the cart and Dad watched them take off, the man’s legs and feet sticking straight up towards the sky, frozen in place, forever frozen in time.

Once Dad found Mr. Johnson, he realized that Mr. Johnson’s rider, Mrs. MG was unaccounted for.  He needed to find her, too.  Dad and his own riders had hiked passed Mr. Johnson’s car earlier but didn’t think anyone was in it.  So, Dad and a couple of other stranded men headed back out to where they thought the car was with some brooms, sticks, whatever they could use to probe the snow.  They waded through, and sometimes on top of, the deep snow, repeatedly poking it until they hit Mr. Johnson’s car.  They started digging and sure enough, there was Mrs. MG, still in the car.  She was cold, and according to Dad, maybe a bit lonely, but OK, considering.  They dug her out and escorted her up to the house.  Mrs. MG also happened to be the mother of Stanley, the man who had been ahead of Dad on the way to work and had initially slowed and got stuck.  No one is very far removed in this weekday caravan.

Dad then trudged on to his car which was about 90 yards from the house. It had been buried 2 feet below the top of a drift when he left but the wind had shifted a bit and since blown some of the snow off the top. He managed to spot the antenna and as he got closer, a space about a foot and a half in diameter now revealed the top of his white, 66 Chevy Impala, almost camouflaged by the snow.  He tied a little flag to the top of the antenna so the snow plows could see it. It was still stuck in the road. The interior of the car was now full of snow since they couldn’t roll the window back up after they climbed out. The engine was also full of drifted snow.

Mom was pregnant with me and home with my two brothers. It crossed her mind that she might be raising three kids by herself. Dad caught a ride home after the plows were able to maneuver the snow and the stuck cars.  No big deal.  Back to life, back to work.  They did what they could do and that’s that.   But his eyes still welled up telling me about finding the man. He was helpless to save him. He was also a husband and a father. One walked right back into his life without missing a beat, the other left a family drastically altered forever.

We met with more doctors, starting the day with two appointments and ending it with five.  They confirmed what we already knew, surgery was the only option other than doing nothing.  Our visit consisted of lots of waiting, lots of sitting, punctuated with bouts of information being thrown at us.  The surgeon got an urgent call during our meeting with him, stood up and said “we’ve discussed all of the risks, up to and including death” and made eye contact with each of us.  We nodded.  Dad said he understands the risks, he wants the surgery and if he doesn’t make it, “well, then it’s my time to go”.  Then we’ll see you for surgery.

 

Mom getting ready to score on Dad.

Mom and Dad Air Hockey

Mom showing us how it’s done.  Me capturing it with a crappy photo.

3 of us in the workout room

Dad said something funny…but is still suspicious of the phone that takes pictures.

Dad and Me Funny

The Barbara Woodward Lips Atrium in front of the fresh flowers changed weekly.  The man paid to stand around, give directions and explain who Mrs. Lips was did not share our sense of humor when asked what kind of events they held in the Hot Lips Atrium.

Mom and Dad in the Lips Atrium

One of the staff took a moment to sing with the piano player in the Subway of the Gonda Building.

Man Singing with Piano in Gonda Subway

Dad navigating the Subway.

Dad Gonda Subway

I wonder if Kanye or Bieber will be performing while we’re there?

David Geffen Auditorium

Dad posing next to an Andy Warhol of a gorilla.  A guy walked past and Dad pointed to the picture and said “I’m posing next to my picture.”  The confused man responded by upping his speed.

Dad with Andy Warhol's at Mayo

Gonda Guy from the bottom up.  Mom was not impressed.

Gonda Guy from the Bottom Up

 

To be continued…

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.

 

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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.

The Intersection Of Unicorns And Chemo

As I walked into the chemo room, she was sitting in my line of sight, the first chair seen as you walk down the hallway. She was covered with blankets all the way up to her chin. It took me a second glance to place her but I knew as soon as I laid eyes on her that I knew her. I’d only ever seen her in and around the pool for aqua therapy. There are often 4 patients in the pool at the same time, each one with a therapist, and she was almost always in the pool or waiting to start at the same time I was. It’s rather intimate as we’re mostly physically exposed, doing weird things with our bodies that everyone can see and every word uttered can be heard by everyone else. There are no secrets in aqua therapy.

I had eyeballed her before our sessions as we waited, as I did everyone, to size them up and see if I could determine why they were there. Unlike me, she was quite talkative and her positive attitude and smile were always on display. My therapist tried to make conversation with me but I rarely played along.

Her circumstances seemed to be quite similar to mine. From what I could deduce, she was a few years older than me, had breast cancer and the pink scars on both of her legs and hips, along with her rehab of those areas, led me to believe that it had also spread to her bones and she’d had surgeries similar to mine only on both of her legs. After I thought I had her mostly figured out, I asked her a few pointed questions as we sat waiting for our sessions to start. I was right.

She was walking with a rolling walker when we had therapy but was moving well and improving, to my dismay, at a faster rate than me. What?? Most of the folks in therapy looked like they were in much worse shape than me and much of the time, a few decades older, rarely any of the athlete variety. There was no reason any of these people should be making progress faster than me, dammit! I had the potential and the drive to rehab at a rate better than, well…everyone else I encountered, or so goes the indignant story in my head.

Seeing her now, sitting in a chemo chair, I wanted to talk to her, to see how she was doing. Not just to compare our rates of progress but because she and I had a bond. We were in this together even if she didn’t know it. I witnessed her grown son come to therapy with her and in every session I’d heard her talk of her family. It was easy to sense her overwhelming love for them. She laughed easily and I liked her even though I hadn’t shown it. She still had her hair so I assumed she was getting the same drug as me, the same regimen. She and I shared rare experiences, unlikely circumstances that were almost identical. We were both unicorns and up to that point, I’d never seen another one. I wanted to know how her son was doing. I wanted to know how she was doing.

The Man that had accompanied her was talking with her so I left them alone as I walked past and picked out my own chair, always in the row facing the windows even though they are high up and all you can see is the sky. As I waited for the nurse to prepare my drug and my needle, I watched her and when she looked up, I smiled and waved. I was happy to see her. She gave me a confused look, waved and then I could see it click in her eyes. She gave a faint smile. She’d probably never seen me anywhere but in the pool, wearing a swimsuit and bed head so it took a moment to place me.

I wanted to talk with her before I left but as I sneaked peeks at her, I came to understand she didn’t feel good. My eyes landed on the wheelchair next to her and realized it was hers. Her smile and positivity had faded, her normally rosy cheeks had gone gray. I was equally curious and concerned. She had arrived before me but still wasn’t hooked up to an IV. The nurses were coming and going from her sporadically. The Man sat in her wheelchair and rolled gently back an forth, about a foot or so. He wasn’t wearing a wedding ring and I couldn’t see any physical resemblance to her so I didn’t fill in the blank regarding his connection to her.

Finally, a nurse came out and said loud enough for me to hear that her labs were not good enough to get chemo today. They were sending her home. Her face fell even further and mine fell with it. The nurse and The Man took the blankets off of her. Both of them gently grabbed a side of her to help her stand. She was wobbly and needed a moment to steady herself, even with help on each side. The Man had moved the wheelchair as close as possible and she didn’t even have to take a step to sit in it. As they slowly lowered her into the wheelchair, she winced and said, “yeah, that was painful” as if to confirm the suspicion in their eyes.

I couldn’t take my eyes off her. I wanted to go to her, to comfort her, to ask her if her cancer was now killing her at a rapid rate. I wanted to line us up and compare us, apples to apples. She was me. Right? She was as close to me as I’d ever seen and it was stunningly close. Now, terrifyingly close. I knew looking into her eyes was looking into mine, save an unknown amount of days.

The Man covered her up again with blankets and rolled her out. My machine beeped. The nurse came to pull out my needle. I put on my coat, gathered my belongings and walked out into the cold.

Gathering My Marbles….And My Thoughts

I’ve had a few days to process the findings from my appointments at Mayo Clinic.  I still don’t feel anything significant.  No feeling of relief, no elation.  Just what’s next because there are always challenging circumstances and tough decisions to make after these types of appointments.  This time, I get to make decisions based on good results.  For the purposes of this post, and my sanity, I’m going to stick to the results of the scans and not go into the decisions that I now face.

Other Sarah accompanied me to Rochester on Sunday and I had a fun time hanging out with her despite the reason for the trip.  We have a long history and she knows how to handle me; when to back off and most importantly, not to take things personally if I get snappy.  There is a lot of raw honesty and humor between us.  Those who know me understand that I’m inclined to go on these trips alone and get indignant when people tell me I need someone to go with me.  No, I don’t.  For a variety of reasons.  I don’t like inconveniencing anyone else.  I can drive as fast as I want.  I don’t have to be concerned with anyone else’s needs for the duration of the trip and I can just focus on the tasks at hand.  I can handle whatever happens in the appointments.  I don’t need moral support.  That said, it was good to have her along.  Like a girls weekend getaway minus all the scans and cancer nonsense.  She thanked me for allowing her to go with me. Um, yeah.  You’re welcome, Sarah.

Leading up to the appointments was tough for me.  As I’ve said before, I’ve gotten good at compartmentalizing but it was time to finish my toughest research and preparation and look my potential circumstances in the eye.  I needed to be ready to talk about a host of topics with my doctors.  I respect my doctors and their opinions but they are not the last word on treatment.  I am.  I’ve been looking into treatments that are not currently standard of care but have some impressive results.  Unfortunately, most people who seek these out have exhausted all other conventional means of treatment and are in bad shape.  It’s hard to read their accounts when you don’t have cancer but knowing that this could be me someday was grueling to read in detail.  I also went back and reread some of my reports and found some new ones I hadn’t seen yet.  That was emotionally debilitating.  If I was reading those reports thinking that it was someone else, I’d have written that person off.  Dead man walking.  There is a lot of dire verbiage and besides the widespread invasiveness and destructiveness of the cancer, the surgeon was questioning what he could do for my leg and hip.

I was not nervous leading up to my appointments but I did feel the gravity of the situation.  Instead of Death just hanging out with me, it was in my face, taunting and antagonizing me, relentlessly.  Not just Death.  Death doesn’t incite the emotional reaction in me that the potential for pain, suffering and a debilitating demise does.  Repeatedly seeing news articles and tv segments regarding Brittany Maynard’s decision to end her life rather than suffer a horrible end from brain cancer, and the ensuing debate over her decision and action, was also hard for me.  It was like being punched in the gut when I was minding my own business, just cooking some dinner.  It would sneak up on the tv or unexpectedly face me on my computer screen.

Monday started on the Ortho floor with x-rays of my hip and leg.  I like looking at all the stuff.  Here are some crappy pictures of the waiting room.

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Naked Bones

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Musculoskeletal System laid over the top of Bones

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Peek Inside

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If I ever get my hip replaced, I want the extra-shiny upgrade.  Pretty sure it’s faster.

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I think I can troubleshoot my own hip by looking at this.  I have a big catch when I engage a certain range of motion.  I had Other Sarah feel it and the look on her face would’ve been entertaining if we weren’t talking about my leg.  Quite the look of shock and awe.

The waiting room was full but once I got in, the tech was speedy with the x-rays.  She even told me I could keep my short pants!

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Next, on to Nuclear Medicine for a PET scan.  He was speedy and efficient and had no trouble with my veins unlike the nurses in Des Moines.  Sitting and waiting for the nuclear tracer to go throughout me is an unusual experience.  You sit in a dark, quiet room by yourself with no stimulation.  No phone, no talking, no tv, no reading.  I had quite the parade of thoughts and emotions.  At the 45 minute mark, another guy came to get me and led me to the machine.  20 or so minutes getting my innards scanned, and ultimately determining my fate for the short term, and he sent me on my way.  We even had time for lunch!

Back to the Gonda building.  The nurse took my vitals and then left us unattended in an exam room.  I proceeded to inventory the contents of the room and took a few things for test drives.

I met with the surgeon first.  He is a man of few words and even fewer expressions.  We looked at the x-rays and he seemed pleased.  I’m impressed at the precision of the placement of the titanium, especially in my femur.  It looks perfect.  Knowing that they were doing all of it through a new hole in my arse and getting it precisely right down to my knee…..yeah, impressed.  I got to see pictures they took during surgery of the hole they worked through while it was open. I also got to see the mushy tumor they dug out that had been feeding on my leg.  Knowing everything they did; placement of rods, filling with bone cement, and ending up with a functioning leg is amazing, really.  He examined my “catch” and we determined it was the top of the rod in the femur sticking out a few millimeters and the connective tissue catching when it rolls over the top of it.  He wasn’t concerned and told me of a few options to address the pain.  I’m OK with the pain for now as long as the titanium isn’t sawing through the tissue every time I bend my leg.  I don’t want my leg to fall off as I’m strolling through Costco.

He then pulled up my PET scan to read the findings and look at my leg.  I jumped off the table and hovered over his shoulder.  I’m not shy about this stuff.  These are my scans….it is me they are referring to and why everyone is here.  The first sentence started “Excellent response to interval therapy…”  He and I both continued to skim the verbiage and then he pulled up the scan.  He wanted to see my leg.  I wanted to see everything.  There were no bright colors in my leg.  There didn’t seem to be any bright colors anywhere except my brain, which is OK, although Other Sarah didn’t realize this and I think had a moment of terror.  At some point Dr. Sim even let out a quick chuckle.  I think that was his equivalent of glee.

He said he’d retrieve Dr. Loprinzi and disappeared, leaving Other Sarah and I.  She was ecstatic.  I was pleased but subdued.  Since he left the screen open to my scans, I started pulling them up to see what I could see.  Other Sarah alerted me to noise in the hallway so I quickly took my seat like a good little girl and pretended I wasn’t nosing through my scans or anything else.  Dr. Loprinzi entered after a quick conversation with Dr. Sim.  He knew things looked good and his mood reflected it.  We went over the scan and findings in more detail.  When compared to the scan done in July, I’d estimate about a 95% reduction in the active cancer.  Words such as “regression” and “decreased” were used in the report.  All the spots in my legs, hips, vertebrae and all but one rib showed no activity to the naked eye.  There are a couple of spots that remain but they were green instead of red which means decreased, although persistent, cancer activity.  These are also the spots that had some of the greatest degree of deterioration on the initial scan so this didn’t surprise us.

What does this mean?  The cancer is responding to the treatment.  It is still there but most of it is not “active”.  I still have holes in my bones but some of them are starting to heal.  Overall, this is excellent.  About as good as it gets for me at this point.  My orders are to keep doing what I’m doing and that got little argument from me, for once.  I still have some pain; it never completely goes away.  My leg gets stiff when I sit still.  But considering what I’m dealing with, I can live with it as long as I can continue to care for myself as my body and mind dictates it.  I think I feel about as good as I can under the circumstances.  I’ll take it.

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Sarah Squared in front of the Gonda Building.

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Post results smile with the Gonda Guy.

The next day was Veteran’s Day and I was able to spend it with my parents as I have for many years.  We go out for a free breakfast at Hy Vee which enables my dad to be in the company of many other veterans.  He is a Korean War veteran and always tells me a story and reflects on things that he is otherwise reluctant to share.  We then go to the ceremony to honor the veterans and it is quite emotional for both of us.  Seeing these men and women that fought so bravely for our rights and freedoms always chokes me up, especially the older ones that struggle to rise, salute and get around in general.  I was relieved that I was able to come home with good news following my appointments and not be kept there for additional tests and miss this day which is so important to us.  Much honor, respect and thanks to our military men, women and K-9s, past and present.

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