sarahsbeingfrank

Month: May, 2015

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