Life After Retirement

Well, that didn’t last long.  We haven’t even been home for two weeks and I’m already soul searching; trying to decide what I want to be when I grow up.  All my life I have wanted to help people.  If my job didn’t allow me to do that on a daily basis, then I assumed active roles in non-profit groups that would.  For most of my life I was helping farmers to be more profitable or in many cases trying to keep them in business.  Giving them that loan or helping them to restructure to breathe life back into their operation was very rewarding work.  When I wasn’t doing that, I was helping families obtain funds to buy or build their dream home.  I wonder if my talent for writing (assuming that I have some and people aren’t just trying to be kind) comes from years of pleading others cases.  Nearly thirty years; presenting convincing written narratives of why my customers should be granted a loan so they could continue to live out their dreams of operating the family farm. 

We still own the store and I could spend all the time I want pouring over the numbers and making spreadsheets; sharpening my proverbial pencil to make it as profitable as possible.  Sure, one could say that I’m preserving the legacy that predecessors have worked so hard to build, and that’s something.  I’m providing a good hot meal at a fair price and affordable catering for those looking to feed their friends, family and co-workers.  I pay my taxes and provide employment for a handful of people; and try and treat them as fairly as I possibly can while still being the boss.  I donate when I can and our annual cutest dog contest generates a little money for the local animal shelter.  Santa and Mrs. Claus visit the store each year and that’s great fun for us too. I enjoy it, but it’s not the rewarding feeling that I am looking for.

Having retired on a Friday and moved into the hospital with Scott less than a week later, I really didn’t have time to process my retirement.  Working from home remotely meant my co-workers sent their well wishes via text or email.  No packing up or saying good-bye.  It was just over and with so much on my mind it was on to the next crisis.   Since moving down here, having the job and the store didn’t really allow any time for charity work.  I did a little writing for the local newspaper for fun but that was about it.  Unfortunately, after a life-time of always having too much on my plate, what do I want to do for fun?  Sure, I enjoy sewing and I should spend some time organizing my house and decluttering but what after that?  I don’t need a job; but I need to be busy.  Busy doing something that makes a difference.    

As difficult as it is being a caregiver and basically living on a couch in his hospital bed for the greater part of his 40-day stay, one might say I was in my element.  I had a job and I was fully committed to it.  Needless to say, it was probably the most critical job in my life.  Doing what I could when nurses weren’t around and learning to be his nurse once we headed out.  Balancing my store duties from afar, making sure bills got paid and that he had everything he needed to get through this thing that meant life would go on.  I was needed.  Now that he is feeling better and recovery is staring us in the face, I feel a little lost.  Strangely I never felt lost when my kids left the nest, I knew that I had raised them in a way that they could have successful, happy lives and I was excited for them to get out and experience that.  Having Scott start to want to get out and about is a little more nerve-racking.  A reminder of the days when we were taking the training wheels off the big bikes, or handing our children keys to the car or truck. 

Scott and I talked after my last article that alluded to the fact that we were workaholics.  His point was that it isn’t work if you love what you do.  That is certainly what farming is all about.  You love what you do; it’s all you want to do.  It can be part of you at an early age.  A fellow farmer can see it in a young person; a child farmer is born with an old soul.  When I saw that in a young person or felt it in their commitment, I would do anything I could to help them survive in farming.  Sadly, the future of America’s farmers is questionable.  It’s a lot of hard work for little money for the average farm.  The level of financial investment it requires now days is staggering.  Not to mention the need to be good at a multitude of things.  Now more than ever, a farmer must be an impeccable money manager.  Even the best farmers with the best animals or ground have faltered over the last few years of terrible prices.  Prices haven’t risen on the farm like they have at the grocery store or meat counter.  A large percent of the increases in food costs are covering wages and transportation costs at the packers and processors and not ending up on the family farm.  What little that does make it back to the farm goes out the door to cover higher feed costs, fuel costs and inputs for our fellow crop farmers.  Add to that the rising interest costs and rumors of a diesel shortage and we could really be heading into big trouble for agriculture and ultimately everyone. 

After a long wait, we are finally watching Yellowstone.  The portrayal of the passion that it takes to run a large farm is accurate.  The idea that it takes a lot of money to run a ranch like that is also true.  One shouldn’t assume that where there are big houses and shiny new pick-ups that there is a lot of money being made.  There’s a good deal of the story line I hope is just that – a story.   In my world, not many farmers and ranchers are appointing family members to the highest offices of State government and killing everyone that gets in our way.  Still, an hour or two of Kevin Costner will never be something I will say no to. 

The view from my kitchen window – the calves love to sun themselves in my rock garden at our version of Yellowstone

I’m really enjoying writing.  It’s great to create and get things off my mind.  While writing is helping me; I don’t see that it will help others to the extent I would like.  I’m considering doing some You Tube videos as a way to try and help others that are going through cancer.  This is a big step as I have always enjoyed being the one behind the camera; so being on camera would be a challenge.  Maybe my readers have some ideas for making my retirement rewarding as well as relaxing.  Feel free to leave me your ideas in the comment box.  I would love to hear your feedback.  For those that know me, I’m sure it’s no surprise that I’m already ready to take on something more to do.       

Don’t Put off to Tomorrow

In what I refer to as my “first” life, our friend group decided to try a Mexican vacation.   For me, it was the best.  As soon as we returned from that first trip, I set up a payroll deduction adequate to accumulate the funds to do a repeat trip in two years and have it fully paid for.  I was hooked.  After my divorce, I continued building that vacation fund and ramped it up.  I worked hard; I deserved that one week in paradise; every year.  Heck with that every other year thing!    

When Scott and I started dating in 2011, I knew that continuing a relationship with him would require a lot of compromise on my part.  Everyone knows that a 4th generation livestock farmer doesn’t fall in love and move in with his girlfriend in another part of the State.  Considering, if we were the match that our match maker thought we were, I would need to make some serious changes or concessions in my life.  So, I decided Scott would have to agree to a couple things himself.  He would have to get along with my “brother from another mother” and he would have to agree to annual destination vacations. 

Could he enjoy this type of vacation?  While it sounds like a no brainer for most, it was a major accomplishment getting him out of the barn for a day let alone for multiple days and all the way out of the country.  Never a sun worshiper, he couldn’t see how this was going to be enjoyable but he was a sport and gave it a try.  Ultimately the idea of a all expense paid vacation won him over. So in 2013, we went with a group of farmers from Michigan, many of them much older than us.  That was a good starter group for him since he had something in common with them.  We didn’t hang out on the beach with them but we dined with some of them a few times. It was nice seeing a familiar face on the resort occasionally.  He managed to enjoy himself and we set a goal to do it again. 

In 2014, I was able to take a once in a lifetime trip to Ireland with my daughter.  She was finishing up a study abroad trip so I joined her for an extra week with one of her friends and three of her family members.  It was a delightful series of planes, trains and automobiles.  The country-side was beautiful and the people were so friendly.  I think it will remain on my bucket list as a do-over trip with Scott. 

The next year we invited Tal and Cindy to join us in Mexico for a belated honeymoon.   That was an eventful trip resulting in several memorable stories.  They joined us again in 2017 and we went again with them on their honeymoon in 2018.  In 2019, we joined Scott’s cousin Jeff and his wife in Spain.  That was another very fun trip with beautiful scenery.   The language barrier was somewhat difficult there but the people proved to be very trustworthy.  Scott left his suitcase at the railway station and when we returned some time later, it was still there.  We joke that they opened it and found nothing but out of style clothes and decided to leave it.  Funny now but not so much then. 

Four couples enjoyed Jamaica in 2020; so much so that some are returning to that resort in 2023.  Scott won’t be cleared for international travel yet so we will likely visit friends and family in Florida instead.  Saving Aruba for 2024. 😊  We also were part of a group that did a house boat vacation in Kentucky in 2020.  Scott didn’t have the best of luck on that trip either.  After a slip and get crushed between the rock and a rocky ledge kind of fall, he was in agony with what was probably a broken rib or two.  We went to Costa Rica in 2021 while most of the world was locked down for COVID.  We found traveling very enjoyable that year as the resort was nearly empty and the excursions very affordable.  We got hooked up with a young man doing day trips that had worked on a dairy farm in Michigan; a farm that was part of the co-op that I worked for so I knew of the farm.   We did a great variety of activities including fishing for tuna and going to a crazy iguana park.  Feeling comfortable with him, we did some touring out away from the resort and it was very interesting learning more about their culture and the work environment there. 

That summer we did a bucket list trip to Maine for Cindy’s birthday.  In 2022, we invited a new couple to join us in Cozumel.  They proved to be a great addition.  He’s an all-round nice guy like Scott and she’s as kind and bubbly as they come.  And I think she enjoyed the water slides as much as I did.  Again, we got to know a local guide and asked him to show us around some of the local hang-outs rather than the tourist traps.   The island, resort and company were all great but the vacation turned into a nightmare when Scott developed excruciating headaches that just couldn’t be controlled.   There were a couple nights that we both feared that we were on our last vacation together.  One particular night I did something rare and almost unheard of, I got myself all “gussied” up for dinner; in my little black dress and a great tan.  It was soon evident that he wasn’t going to be able to join us.  I remember what a huge disappointment that was to not have him by my side.  All dressed up and no prince charming to take me to the ball. 

I’m not telling these things to brag but more as a walk down memory lane. A reminder to myself of all the great things I’ve been able to experience in my life.  Precursors to all the things we dreamed we would do in our retirement.  Reality was that we were both work-a-holics that cut out two or three-time outs each year.  Always too much work to do; never enough hours in a day.  Yet here we are, after basically tapping out for 3 months.  The farm still moves along without him and the store is managing just fine without me.  Sure the work environment is full of people that don’t want to work as hard as we think they should but at the same time, too many of us get so wrapped up in our jobs thinking the work place just can’t function without us. I left a job after 20 years in 2014 and they all moved on just fine without me.  Sure, some people miss you occasionally but ultimately business goes on.   We like to say that no one wants to work any more. Maybe part of the younger generations commitment to working is a consequence of growing up with working parents. It will always be about balance. Make sure you aren’t living to work and missing out on the adventures that await you.

Lessons Learned

Last two Monday’s doctor appointments brought solid blood results and two weeks of weight gain.  Food is finally sounding good to him.  Platelets are finally increasing nicely – first up to 69k then today a whopping124k with 50k being a major mile marker in the road to recovery.  For those new to medical “benchmarks”, the normal range for platelets is 150,000-400,000.  While battling Essential Thrombocythemia, he was on high doses of hydroxyurea to keep his platelets from going up near 1 million.  One big clue in solving the mystery of his illness progression was that his platelets began to drop.  While the doctor thought this was from the high doses of hydroxyurea over an extended period, it was actually the transition of the disease to Myelofibrosis.  It was the reports of the enlarged spleen that cracked the code and sent us to Mayo Clinic with a pretty good idea of what was wrong. 

The role of platelets is to bind blood cells together and enable clotting.  Right after the chemo, his platelets were as low as 5,000.  With platelets under 50,000 any injury or even minor cuts or bleeding of any sort is a concern.  While in the hospital he regularly received platelets but the body was using them up as fast as he was receiving them.  Finally, they began “sticking” – literally, and we saw slow improvement.   It took a while for the insurance to approve the n-plate shots as they claimed they weren’t approved for Scott’s situation but once he started getting them it didn’t take long to start seeing the results. 

Another important measurement is his hemoglobin.  Monday showed him at 8.4.  Still below the normal range of 13.5 – 17.0; but much improved.  This was another early indicator of problems.  Low hemoglobin zaps you of your energy.  Levels of less than 7 will get you a blood transfusion.  In Scott’s case, we are guessing about 30 of them so far.  We are really hoping that October 17th marked the last two units.  In my younger days I was a regular blood donor, but I got away from it when it seemed to be such a hassle to fit it into my busy schedule.  I think I need to get back in the swing of it now that Scott has done his part in denting the O Negative stockpiles. 

My non-medical mind has to wonder, if the body holds 10 pints of blood, and he has gotten three times that, what roll do the stem cells play when it would seem that all that has been flushed out already.  Being that the procedure has moved from bone marrow to stem cell transplants, what will be the next improvement to the process?   While some people can escape cancer for a while by removing the affected area, blood cancer can be removed with a complete fluid flush of sorts. Crazy to think about.  

Back in the days of discovery and disbelief; I found that educating myself helped.   I read and read and searched and searched.  I created a spreadsheet with multiple tabs.  I would say “if” you find yourself in a similar situation but as I learned we are all living in a world where it’s just a matter of when and not if cancer will hit your household.  Having a cheat sheet on the blood markers was very helpful while we were in the hospital and even now. I would encourage you to keep a date log as you will need it; either for filing for disability or submitting claims to additional insurances.  The challenge of wanting to be fully informed is that your patient may not want to be that informed.  I had read early on that for the patient, less is best.  Unless they are asking for the information, sometimes it’s just best to keep it to yourself.  It helps you be prepared for doctor’s appointments, but your patient will likely need to hear it from the experts.

Two years ago at Taquamenon Falls State Park

With his numbers being much safer, he convinced me to move us home.  Promising me he wouldn’t do anything that would lead us to need to rush to the hospital for any reason.  So, after being retired from my full-time job for nearly three months already, I finally had a couple days last week where I actually felt retired.  I managed an afternoon outing with a friend and a couple store shopping trips without feeling rushed.  I wasted more time than I would like to admit playing games on my phone.  You know, to keep my mind sharp; at least that’s what the advertisements say.  My days of leisure were short lived; I’m short staffed at the store for the next couple weeks so I will be working there most days.  Thankfully not 8-hour shifts.   Not to mention that there’s still appointments in Ann Arbor on Mondays.  Making sure we have all the meds he needs, working on social security disability and fighting with AFLAC; all duties of my new full-time job.  Along with being parole officer to a 62-year-old newborn.

He is so happy to be home and everyone is offering their support and congratulations.  Yet honestly, now that we find ourselves on the backside of this situation, I’m not sure that it will necessarily be the easier side of things.  I’m afraid that keeping him safe and out of trouble was a lot easier when we were living at the hospital or in one of our “safe” houses near the hospital.  After feeling horrible for basically a year now, he is starting to get over his post-transplant cold/mono and feeling like doing things.  He is supposed to be on restrictions.  With low platelets, any trip and fall injury could end up being a life-threatening situation but it’s going to be hard to keep a good man down.  

The stem cell transplant manual is pretty clear about the risks.  It’s a full year of limitations.  No gardening or lawn mowing.  No swimming and limited sun with lots of suntan lotion.  Limited exposure to pets or small children.  No driving until your doctor gives the green light.  The rule about not leaving your patient alone for more than 20 minutes makes more sense now that he is feeling good.  Given 20 minutes alone, Scott has already managed to break a multitude of rules.  These next few months will be challenging as the last few; a matter of picking my battles.  Knowing that he will want to keep busy, but trying to keep him from doing things on the list of prohibited activities.  Realizing that it will be up and down as he works his way through the A,B,C’s of new allergies, bacteria and cold viruses. 

For Scott, going from being a farmer working seven days a week to total inactivity in less than a year was a major shock to both of us.  Then finally feeling better but still not having the strength and stamina that he has always had is frustrating for him.  Knowing that our activities will be limited for an entire trip around the sun is disheartening.  We will try to keep in mind that the months of excruciating pain are behind him and there is promise for a number of amazing adventures in our future.  Hoping that one day we can say that this wake-up call was what we needed to change our lifestyle to one that includes a lot less work and a lot more play.  Life is too short to work seven days a week; especially at our age. 

Young Love – 80’s Style

I think it’s only fitting that after experiencing the joy and wonderment of my daughter’s wedding last week that I reflect on my past relationships.  All the way back to the days of first kisses, drama and heart aches that plagued adolescents in the ‘70’s and ‘80’s.  Back in the days when things were simple; before social media dating and before kids claimed to identify as cats or fairies, at least publicly.

Pretty sure my first kiss took place at an infamous boy-girl party in junior high.  If I remember right, it was the result of spin the bottle and took place in a coat closet.  The precursor to junior high dances.  In those days, school dances were held in the gymnasium with the bleachers pushed back and chairs around the perimeter.  Couples would find a dark corner and kiss for hours.  I bet chaperones and teachers today wish all they had to worry about was kissing teens! 

Not only was I a band geek for a while, I made the outfit in 4-H.

Growing up in a rural area, there were lots of boys in my neighborhood. I was always a bit of a tomboy and enjoyed being with the boys; the girls were either babies or drama queens and I didn’t have the patience for that.  In the summer, we rode bikes and played softball or baseball in one another’s yards.  I was terrible at sports but I showed up.  I’m not sure if it came from being small and left-handed or if I was just born that way.  In fact, I was so small in junior high that George Mendoza picked me up and put me in a trash can upside down.  That might have been his idea of flirting with me but needless to say he was dead to me from that point on. 

Through most of high school, I had a boyfriend.  It was your typical off again, on again adolescent relationship.  There were a few others in between but most of my memories include him.  Homecoming, Valentine’s dances, prom, my first concert with a boy, etc.  I went to the cabin with his family and hung out at their house frequently.  We ran into each other off and on over the years and I often wondered what life would have looked like for both of us if we had stayed together.  I think everyone has that person.  Sadly in 2015, he took his life.  It’s hard to imagine the young man that I spent so much time with ended up feeling that hopeless.  I can’t imagine the pain that his family must feel. 

Prom Night 1980

Right out of high school I was working at the local grain elevator as the accounts receivable clerk when a particular customer seemed to take interest in me.   He was farming with his father and came from a well-known family in the area.  He was nice and funny; but a good deal older than I was, and he was very persistent.  New Year’s Eve was approaching and I was out of high school and living at home.  Not looking forward to spending the evening with my parents.  The high school guy was still in the picture but it was becoming clear that wasn’t going anywhere.  So, when the funny farmer asked me out for what felt like the 100th time, I broke down and said yes. 

Not wanting to show up in the farm truck, he borrowed his mother’s car.  (Remember that; it will resurface another time; wink, wink.)  He met my parents and we took off.  As we headed out, I asked where we were going.  He indicated that his friends played in a band and that we were going to a New Year’s Eve party where they were playing.  A local bowling alley/bar.   There was only one problem with that.  I was eighteen and the drinking age was twenty-one.  I wasn’t going to be able to get in.   He was twenty-seven.  We managed to find somewhere else to go and we continued to date.  By summer we were engaged and by October we were married.  

Wedding Day October 8, 1983

Marrying young, I was in no hurry to have children.  Our friends were having babies and that was enough for me for a while.  Not to mention that we married in 1983 and interest rates for agriculture were nearing 18% and land values first rose then drastically dropped.  I never dreamt of staying home and being a full-time mom; which was a blessing because most of my married life I worked two jobs to help keep things afloat.  The farm put a roof over our heads but family living draws (wages) on the farm were near to non-existent.  I never minded, I was as committed to farming and agriculture as he was.  Farming is something that is in your blood for life.  It takes a special commitment to borrow hundreds of thousands of dollars to put seeds in the ground and hope the weather and markets cooperate. 

Eventually the bank determined they had invested enough in the farm and they were pulling the plug. I’ll never forget my son’s reaction; he was about nine at the time.   He was on his bed sobbing.  “You mean we aren’t farmers anymore?”  It’s as painful today as it was back then.  “No honey, we are still farmers, we just aren’t farming right now.  You will always be a farmer.”   We managed to sell at a time that values were just starting to rise again and we saved the main farm.  We built a new home adjacent to my mother-in-law and attempted a fresh start.   We raised our children and maintained our friendships but it wasn’t the same. 

In simple terms, I would say that our marriage never made the transition out of farming.  In reality there were many things wrong.   I think it’s human nature to want to help our friends and family when they are in unhappy relationships.  What I learned is that only you can make the decision to end things.  Only you will know when it’s time.  I still struggle being in the same room as him; feeling ashamed that I have no feelings for a man who I shared a bed with for over 25 years.  I’m a pretty tolerate and giving person but when you finally break me, I don’t flex back easily. 

As difficult as divorce is, if you aren’t with your person, it’s a necessary thing.  I lived most of my adult life never knowing what a perfect match felt like.  I had a good life with a great career and raised two terrific children.  I made more friends than any one person deserves but I wasn’t with my person.   

Now that our children are all married; I just pray that they are fortunate enough to have found their person the first time around.  I don’t want them to have to wait 50 years to find their perfect match.  My son has purchased the home we built back in 1998 and I’m hoping it will prove to be the perfect place to raise his family.  While the miles might separate me from my friends and family, the last year has convinced me that I’m where I belong.  It’s been hard, scary and everything in between but not for one second have I regretted my vows; this time around.       

Wedding Day #2 August 23, 2014 – photo credit to Leeanne Seaver

Road to Recovery

I shared my stresses and gave a glimpse at my daughter’s wedding but probably what everyone really wants to know how Scott managed during my little vacation.  Well, as I expected; he did just fine without me.  He was in very capable hands with his big bossy sister – her words and not mine – and her husband Dennis. 

Illustration of a Hickman Catheter used for magnesium IV after BMT transplant

While we were doing our training before we left, Dennis disclosed the fact that he was a little “anal”; but comfortable with it.  Without skipping a beat, I commented something to the effect that his disclosure was not exactly a news flash.  We laughed it off and I told him that I too tended to be a little “picky” and that was why I was comfortable leaving him in charge of the IV duties.  Being very careful and meticulous is perfect when administering medication through a device that dumps fluids into a major artery in Scott’s chest that flows directly to his heart.  I’ve grown pretty comfortable with it, but it was very intimidating in the beginning. 

While Dennis was in charge of the IV, Kathy was the round-the-clock watch and chief food pusher.  When I first started dating Scott, his mother was lovingly known as a food pusher.  For many years, she cooked for a house full of kids or farm workers and was very good at encouraging everyone to eat until everything was gone.  In recent years she’s retired her apron and relinquished her title.  Monday’s weigh-in had Scott weighing two pounds more than the previous week so Kathy did her job. I think she is ready to assume the title and run with the torch. 

Kathy and Scott did a little tooling around in the ’84 Chevy while I was away.

A friend messaged me Monday and gave me a nugget that I should have figured out myself.  She reminded me that we all need to be helpful or needed and that by giving Scott’s family a chance to help was giving them a gift.  I think that’s very true.  If the shoes were on the other feet, I would feel that way for sure.  I think they enjoyed some quality time together that will remain in their memories much like the memories that were made at the wedding. 

Speaking of putting on a couple pounds, that brings me back the topic of BMI.  Medical News Today indicates that “A BMI of between 18.5 and 24.9 is ideal.”  I wish I could share with them a photo of my naked husband with a BMI of 20.  His medical chart lists him as severely malnutrition and that is nothing short of the truth.  With many insurance companies using this guideline to place additional costs on subscribers, it’s something that more of us should raise question to.  Not to mention the millions of men and women with body image issues that are using this as their measuring stick to the perfect body size.    

It’s often said that it takes a village to raise a child.  At the same time it takes a network to help raise the spirits of a loved one that’s gone through a serious health scare.  Not only did Scott get excellent care while I was gone, I think Scott needed a change of pace as did I.  Fortunately, his family is near and available.  I’m sad for the number of people that don’t have friends and family that can help out with respite care.

Something else I’ve learned is that post-traumatic stress disorder or PTSD is often diagnosed with cancer patients.   It can happen any time from diagnosis to later in recovery.  Depression does run in Scott’s family so it’s something I’m watching for. I don’t feel we are there but there could come a day where we decide that some type of counseling might be helpful.  Even with all the support he has gotten from friends, family and people we don’t even know; he still has days that he wonders if he will ever be the same again.  If the transplant will work and if so, how long will he be symptom free.  All things I often fear myself, but we don’t discuss often.   No one can really understand what it feels like to go through such a process.  From our experience, it’s clear that everyone’s experience is different.  You can try and educate yourself and prepare but only God knows what is around the next corner.  We continue to experience the unexplainable.  Just when you get to a point where you don’t know how much longer you can do what you’re doing when what you’re doing isn’t working, then something changes and the path takes a turn.  Giving you a fresh perspective allowing you to hope and try again tomorrow.

After returning Sunday afternoon, I made the trip back home to do payroll and gather Scott and our things to head back to the Lake house.  We’ve become those people that wear masks in the car.  Since weddings seem to be COVID super spreading events, we are social distancing and masking.  So far, the only person we know of that had it and didn’t know it was someone I didn’t socialize with.  Prayers and fingers crossed that she will get through it ok as she already has some existing health problems.

Nothing beats Michigan fall colors

Monday, we left the lake house at 8 a.m. and returned at 7 p.m.  It’s hard to believe it can take that long; but there’s the hour drive and parking and getting to the necessary department.  Blood work and wait.  Meet with the doctor and wait.  Blood transfusions and wait.  Then back home.  While gas prices could be better, the fall colors have been outstanding this year which helps make all this time on the road more enjoyable. I think we’ve traveled about every back road between here and Ann Arbor by now.

Two months post-transplant and his platelets are finally up to 50(000); on a slow climb. The low end of the desirable range is 150(000).  Pretty much all activities are restricted under 50k but even at 50k his energy level isn’t where he would want to take on a lot of activity yet.  Getting over the cold should help get him back to a place where he wants to go for walks again. I don’t know how many more hours of Grit TV and Storage Wars we can watch. When we sneak home we watch Yellowstone on the big television.

His sense of taste and smell is still off but we are slowly adding more to the menu.  Talking with Kathy about things he will eat, I realized that almost everything he wants to eat is cream colored.  In talking with a few others that have experienced cancer and chemotherapy, they echoed the same experience.  He went through a phase of drinking hot tea but still really isn’t drinking more than a few swallows of coffee. Oatmeal, cereal, puddings, ice cream and squash are a few of his favorites.  Mac and cheese was a hit for a while too.

For those that know him, most are shocked that he hasn’t eaten meat yet.  He’s attempted fried chicken with a little success and actually managed to eat a few Kowalski hot dogs.  Of all things; hot dogs.  No red meat yet.  They say that BMT patients can acquire the allergies of their donor; but I wouldn’t think they would acquire a new food palate. It would certainly be shocking if Scott became a vegan at this point.  Will we find that he not only retired from cattle farming but from eating red meat as well?  That’s something I can’t imagine; but then what about the last year could I have anticipated.  I guess time will tell. 

I have no idea why I took this picture but I love it. I think the natural lighting made me do it. Vacation in Cozumel 2022

Wedding Woes

I recently listened to Kelly Clarkson interview Sam Smith about writing songs and that how their best song writing came when their feelings were fresh and raw.  I can totally see how that relates to writing of any kind.  My best stories have come from highly emotional situations.  But in stressful situations, how do you do write your story without calling out your perpetrators or reveling information others would prefer remain private?  Putting your thoughts out there, then wishing you could retract them but they are permanently written in the cloud; no take-backs.   

As many of you have noticed, I haven’t written in a few days.  I hard as I tried, I wasn’t able to put into words the pain and frustration I was feeling.  I’m set on keeping it real; so, I’ll fill you in.  Thankfully, now that it’s in the rear-view I can say that everything worked out for the best but it sure didn’t feel that way when it was unfolding.   

From the minute that we found out that Scott needed a stem cell transplant, I have been counting days and trying to anticipate how he would be feeling by the time my daughter’s wedding day got here.  As a blended family, our kids were already college age when we met.  They never had to live together but since we’ve been together, we’ve done holidays, vacations and other activities as one family.  They all get along and have a great time together.  We were a fairly new couple when his daughter married but we were married ourselves by the time each of our boys married; within a month of each other.  Having rented a large Airbnb for a family hangout for all the “kids” I was really looking for a great wedding weekend getaway for our last child’s wedding.  A blended family outing.    

Right after the transplant, Scott seemed to do really well and the dream was in focus.  Sure, we would be stretching the 100-mile rule but we would be within 20 miles of Cleveland Clinic.  COVID is still a concern but I have a plan.  The house is huge and we can cordon him off in the bedroom with the adjoining sitting room with fireplace.   Position him in the back row at the wedding and whisk him off as soon as the ceremony is over.  Back to a hotel to avoid the busy-ness of the Airbnb.  Bases covered.  He’s present; but protected. 

October approaches and he comes down with a cold; and tests show it’s not only a cold, he has mono too.  Looking back, we think he’s probably had mono since he was in the hospital.  It explains his extreme tiredness, but inability to sleep.  It could be part of the rash and lack of appetite. 

In the days leading up to the wedding, I was constantly being asked what I planned to do about Scott.  Everyone had their opinion and felt the need to tell me what they thought was best.  As if I’ve been caring for him all this time and now, I suddenly don’t know what’s best for him and need to be told what to do.  I was a mess.

What ultimately led me to concede; to say he shouldn’t go, was seeing that he wasn’t engaging in the discussion about whether he should go or not.  Maybe he was scared; not wanting to have people looking at him and wonder what was wrong with him.  Whether he could get around without the help of a wheelchair that we didn’t have, and how he would stay warm with temperatures predicted in the fifties; when he was already freezing when it was eighty degrees out. 

Friends Tal & Cindy – critical links in my support system

I phoned my friend and trusted advisor Tal (that went with us to Mayo Clinic), and he convinced me that I needed to let his family take the reins for a few days and try to enjoy the days that were about my daughter.  Something that wouldn’t happen if he was with me and I was constantly worried about him.  It was her big day and the last thing we wanted was for Scott to become the center of attention.  It was time for me to take a break.  He and his wife would be with me and everything was going to be alright. 

Brother-in-law Dennis took over the IV duties

Once I changed my attitude; the first hurdle was breaking down and asking for help.  Letting go of control. Daunting.  I needed to find someone to stay with him for three days. Sure everyone always says they will help but when the time comes; will they? I needed someone that I trusted; that would also need to be confident enough to manage the magnesium IV and manage his medications and hound him to eat and take a shower.  Then get them comfortable with the process in a couple of days. Scott’s sister and her husband were quick to step up to the challenge. Still, I felt like I was walking off the job when he still needed me.  I couldn’t see how I was going to enjoy any of it while leaving him behind.     

It also meant telling my daughter, who had told me so many times how important it was for Scott to be part of her wedding, that he wasn’t well enough to attend.   I had to stop worrying that people might ask me where my husband was, causing me to fall apart.  Ultimately, I put on my big girl panties and dealt with the fact that I was not going to be able to share this once in a life-time event with my best friend by my side. 

Headed to the venue on wedding day

Things fell into place throughout the week and Thursday night my friends picked me up for the four-hour drive to the Airbnb.  I had committed to providing breakfast and lunch for our guests and the wedding party for Saturday so I was able to be in my comfort zone cooking on Friday morning.  We followed that up with a little retail therapy and finally the rehearsal and dinner.  It was a sleepless night; I think I just fell asleep and the girls started arriving to get their hair and make-up done at 7:00 a.m.  Like her mother, the bride planned to single-handedly manage the tasks of the day.  Complete with her own spreadsheets, typed out instructions for all and an hour-by-hour schedule that all wedding party members have on their phones.  I would expect no less. 

It was a storybook wedding that went off without a hitch. It seemed that by the evening she was allowing herself to be present and enjoy the day she had meticulously planned; one that marked the official beginning of her journey as a committed life partner.  A group of us were able to do a video chat with Scott and his sister and husband before the night was over so that was nice.

Having divorced parents is not easy or desirable; but I think it’s allowed her to see what life with the right person can and should be like.  That commitment is not always full of the joy and excitement that we hope it will be.  That even fairy tale relationships have sadness and frustration.  That when you really love someone, you do what you have to do.  One day at a time, with some days being more difficult than you ever imagined.             

Aging My Way

Last week my husband turned 62 years old; a day later a good friend turned 73.  That leaves me shaking my head and going “WTH” – how is that even possible?  I may be a little bias but I think we are pretty fun for old people!  We lost my grandparents on my father’s side early; grandpa while I was still in high school and then grandma when I was in my early 20’s.   Yet I remember thinking “well, they were old; they lived a good life.”  Looking back, that was crazy!  My grandfather had just turned 70 and grama lived to be 71.  But at the time, they had been spending winters in Florida for several years and weekends in the summer at their cottage on the lake.  Which thankfully they had because they really didn’t live long at all.  Is my change in perspective all part of aging; or is 80 the new 60?  I definitely think that 60 is the new 40!

Enjoying the water slides on vacation this past February. What a blast!

I’m sure it helps that we spend time with couples that are younger than us.  At the same time, we have a lot of friends in their late 60’s and they can party with the best of them.  It probably doesn’t hurt that they were 70’s teens; former band members and they’ve always known how to have a good time.  I’ve made a point of showing my kids that adults still want to have fun too.   Probably one of my greatest fears is that people stop including me because I’m too old.  You know “no sense in inviting Grama and Grampa to the party; they’re no fun.”  I guess I always thought that somehow; your thoughts, wants and needs totally changed when you got “old”.  In reality I’m learning that for the most part, I feel the same inside today as I have for my whole life.  I just look different on the outside and move a lot slower.  

When Scott & I starting seeing each other, I quickly learned that if I were to become an Oswalt I would need to be able to drink coffee; all day.  Come on in; have a cup of coffee at 4:30 p.m.  It was also going to be much easier if I liked to drink beer.  If you arrived at his parent’s house after that 4:30 p.m. coffee hour then it was probably time for a beer or glass of wine.  Scott and his dad both like(d) beer.  Not several but just a beer after a long hard day at work.   We had a lot of fun playing cards with his parents and having a beer or two.  Those were times we all enjoyed and gave us a lot of great memories.    

Growing up on home-made wines and hard cider I never had an interest in beer.  At the same time, I’ve found the beer market has totally changed since the days of my youth.  It’s a challenge to stock the store with traditional beers and have room to bring in the next new thing. Up until Scott got sick, we enjoyed going to the local brew pub.  It was fun supporting the local young entrepreneurs by being part of the mug club.  Let’s face it, not all of them live up to the hype but there are a lot of really good ones out there.  So many interesting flavor combinations to try out.  The other bonus is that they typically pack a punch and who can complain about a good bang for your buck. 

Not to say that partaking in alcohol will guarantee that you stay fun, I’m just saying it was part of our relaxation routine.  Dinner out and a drink.  Drinks with friends.  A drink together after work.  Scotts had to step away from that altogether, and I’ve found myself almost eliminating it.  I might have a drink but for the most part it I feel like I am on duty most of the time and I can’t risk not being fully alert.  As the years go by, I find my stomach is less tolerant than before but I still enjoy the buzz that a few drinks will bring.  We will see if it finds it’s way back into our lives after his recovery. 

I’m blaming the language barrier for the size of these drinks at Senior Frogs in Mexico!

Moving to the farm meant some other changes for me.  Not only did it mean relocating after 50 years of living in the same small community, it meant adjusting to working from home.  No more dress clothes.  Fashion was never my strong suit so I was glad to close that door.  No more make-up.  Then we bought the store.  My hair has to be long enough to pull up.  Getting ready for work means brushing my teeth and hair and a quick scrub of my face with a cool washcloth.  Pull my hair up in a pony tail and maybe a fun headband.  Ready to go in fifteen.  I’ve never been one to have an extensive beauty regiment; wash my face with water, follow up with Avon Nurtura.  Now with the store, between the moisture and the grease, I’m pretty naturally moisturized.   Going out means showering so I don’t smell like fried chicken and I’m good to go.  It never fails; if I wear any make-up, I end up rubbing my eyes or laughing until tears ruin my eye make-up.  Why bother.   

In a world where young people are coming up with all kinds of things to get noticed, I’m at a point in my life where I would prefer to just blend in.  I don’t need buzzed hair, colored hair or a shocking wardrobe.  The other day I saw a young person wearing plastic elf ear extensions.  I’m hearing stories of kids wanting special accommodations at school because they identify with being cats.  To only be young again – I say hell no!  I’ve earned my badges and I wouldn’t trade them for the world and certainly not for a second chance to be young again.   

I think getting older doesn’t mean turning into old people; it means you have earned the right to exercise your wants and needs.  We don’t need to party until we puke any more.  We still might do that occasionally but now it’s nothing to brag about.  Been there, done that.  Now “partying” means wanting to achieve maximum relaxation.  Finding balance.  Go where I want to go, be with who I want to be with.  Dress for comfort and spend time with people who like me for who I am.  I feel like I’ve spent a lifetime working my way to the people I want to spend my wonder years with. 

Our wisdom helps us to better navigate situations when we are older.  Let’s face it, by then, we’ve had so much “stuff” happen to us that we can draw on the experiences of our mistakes and mishaps.  We are nearing the end of experimenting and focusing on what we enjoy.    I don’t need to try on plastic elf ears or wear my pants half-way down my ass to get people to notice me.  I’m pretty comfortable going about my business with my out of style clothes with grease stains, no make-up and hair in a pony tail.  That’s my fashion statement. 

Humor me.  Invite your parents or grandparents to your next party.  You might be surprised how much they can add.  And next time you think your grandmother is going to Florida to sit around and knit you an afghan and drink orange juice, think again.  Don’t let her fool you into thinking she missed a stitch or two because she’s getting old and isn’t as sharp as she used to be; she might have just had one too many cocktails with her friends!

Salute! Living the dream life on our annual sunny vacation with friends.

To Hug or Not to Hug

I can’t lie; I’ve been really excited with the progress I’ve made on my blog.  In three months, I’m up to 2554 views, 1447 visitors and 19 followers.  What really blows my mind is people have found it and read it in 10 countries.  I’m not sure if it’s part of a marketing ploy or what but I even have a beer maker from Scotland signed up for my ramblings. Talk about pressure! It certainly has been a rewarding distraction in the face of this crazy life I’m slip sliding through.  I would love to know why people have read it; and if they have returned for more or not.  Leave me a comment; I’d love to hear from you all. I really hope that it’s helped someone better navigate their own stresses. 

I’m not sure who is more amazed at how emotional my writing has been; myself or the people that know me well.  I’m admittedly a little guarded and I’m sure some people would even consider me a little aloof.  Scott is more likely to cry during a movie than I am.  Perhaps this whole mess has left me a little softer.  Don’t get that confused with passion.  While I have never been a real publicly “mushy” person, I am very passionate; but that’s an article for another day.

One of the few older photos I have on my computer Me and my mom on Mother’s Day 1967

Growing up with my grandparents next door, I spent a lot of time with them.  Making cookies with my grandmother.  Hanging out in the shop with my dad and grandpa.  In those days, I was living the tomboy life watching them make things, break and fix things and work with the animals.  Grampa was a former dairy farmer, turned stockyards worker and still had a handful of sheep.  When I met Scott and learned he had sheep I felt like that was a sign. Too bad I can’t share with my Grampa the things I’ve learned about handling sheep. At least in my memories it always felt like watching someone herd cats.

He cussed a lot; so I think some people probably found him a little scary. I don’t think he could speak an entire sentence without swearing but that didn’t bother me. I did, however, pick up a potty mouth from him that I never really recovered from.  When you are raised around it, they are just words.  No reason to get all bothered by it; pretty sure my mother wouldn’t agree with that logic though.  Growing up, we would go roller skating with the youth group at church. My dad worked nights, so Grampa often took us. He worked at the roller rink at the park when they wintered in Florida so he skated a lot. I honestly have never given it a whole lot of thought but in retrospect that was pretty cool.

Maybe because we saw my grandparents every day, it wasn’t like we hugged them every time we left. Honestly, I don’t remember our family members ever hugging and that was just fine with me.  I never realized there would come a day when it was required.  I met my first husband and his family was a bunch of huggers.  If that wasn’t enough, I turned around and did it a second time.  Married into a bunch of huggers; again.      

Somehow, I managed what I felt was a pretty decent childhood despite the lack of hugs.  Then you add the next generation.  My kids are the blended generation.  Dad’s a hugger and mom’s not.  I believe in most cases; hugging is the dominant trait; children of a mixed background will become huggers by default.  Next thing you know the kids are hugging and telling everyone they love them.  Makes for interesting family gatherings.    

Apparently this is a thing!

I remember the first Christmas with Scott.  Christmas Eve is at my parents.  Meals at 6 p.m.  followed by gifts opened one at a time.  There’s usually a short break for sweet and savory treats and the must have red Christmas punch – not spiked.  All was going well; he was fitting in nicely.  After a lovely evening, he did what all normal, loving people would do; give my dad a firm handshake and thank you and yup – you guessed it – went in for the hug with my mom.  So now what?  Do I have to hug my parents now too?  Is that what they want; we have been doing just fine all these years without it.  After 50 some years; that night advanced us into the hugging my parents at Christmas mode; once a year won’t kill you will it? And the walls come crumbling down. 

Christmas at my parents; mom and dad with their grands in 2016

I’m not really sure why I feel a pressure to explain my lack of comfort with the whole hugging thing.  Probably all the years of having people comment; “Oh, that’s right, you’re not a hugger, are you?”, like I’m the weird one.  I still see nothing wrong with saving hugs for times you feel the over-whelming urge to embrace someone.  Do we really need to hug people every time we see them?  What about only when you haven’t seen them in a long time?  I like to think I’m just keeping it real.  I guess it’s probably at the forefront for me as we have started to allow family to allow visitors. With COVID still a concern, Scott and I keep having the discussion; if we could just skip the hugs for a little longer I would feel better, but for him the hug is worth the risk. I get it.

This year has been both exhausting and emotional.  Everyone wants a hug; and I’m ok with that.  Since my marriage and move to his farm over an hour away, we see my family less often. We’ve actually moved into the “haven’t seen you in a long time” so let’s hug it out zone.  New tricks for old dogs.  Who’d a thought!   

COVID sure did change the way we operate

Happy Birth Day

September 28th – Scott’s original birthday – the day Bonnie brought him into this world 62 years ago.  The first time Scott was born in a small-town hospital, the second child to Gordon and Bonnie.  Dwight Eisenhower was President and Elvis was on his way to becoming “The King” recording hits like “It’s Now or Never” and “Are You Lonesome Tonight”.  Chubby Checker’s “The Twist” tops the Billboard Hot 100 in September of 1960. 

Friends threw Scott a surprise party for his 60th in 2020. This year looks much different.

Fast-forward to Scott’s new or “second” birth day – August 17, 2022.  Born again at the University of Michigan’s C. S. Mott Hospital in Ann Arbor.  Weighing in at 160 pounds and 6’2”; about 60 pounds less and one inch shorter than a year previous.  This time his mother suffering a totally different kind of pain; not being able to see her child for weeks after his re-birth.  Donald Trump and COVID 19 continue to dominate the news until September 8th when the death of Queen Elizabeth II dies at the age of 96. Luke Combs is topping the country charts but a song that resonates for Scott and I is by Cody Johnson and worth a listen; Until you Can’t. Give it a listen at:

Nurse Emily transplanting the new stem cells

This time born with regenerating stem cells from his European transplant life-giver.  Born with complications that require him to spend the first 33 days in the hospital.  Rather than starting out on breast milk or formula, he starts with soggy cereal and yogurt.  Eventually adding oatmeal, strawberry Jello, and untoasted bagels.  He enjoys hot tea but no coffee; for an Oswalt, that’s sacrilegious.  Right after the transplant, even the smell of hot food was intolerable.  It was maybe a couple weeks after his transplant that he broke down and ordered something hot off the hospital menu.  It was quickly deemed disgusting and found it’s way to the garbage.   

I think the first day I left the hospital was in search of McDonald’s.  He was certain that while the hospital food was horrible, a McDonald’s breakfast sandwich and hash brown was going to hit the spot.    I was skeptical but got the nurses blessing as long as I was willing to go in and ask that the food be made fresh and not come from the heat lamp warming area.  I did what I was instructed to do, only to have him tell me that it didn’t taste any better than the hospital food and end up in the trash.  After that he went back to cold foods in shades of beige and stayed there until the other day.

Monday on our way back from the hospital he surprised me by asking for an Arby’s roast beef sandwich.  Up until then, the meat-eating man I fell in love with seemed to have died with the transplant.  While he had tried a chicken breast sandwich a couple times in the hospital, red meat didn’t sound good to him at all.  We made the stop and after what seemed like forever, I emerged with a freshly made sandwich and some hot fresh curly fries.  As silly as it seems, I was thrilled to see him enjoy it.  He managed a few fries and ate the entire sandwich.  As a food pusher, it was a huge success.  Baby steps.

Chemo takes it’s toll on your control of bodily functions. There’s a new urgency to going the bathroom and at one point he made me laugh by commenting that if he wasn’t careful he would have to turn in his big boy card. You might find me carrying a urinal in my purse or see one sitting around; don’t worry, I’m going to see that it’s clean but it they provide a good safety net. While in the hospital, the highlight of many days meant a solid bowel movement and admirable urine output. We’re looking forward to a time when that stuff is no longer considered a reportable events; pushed back to the private sector of our lives.

Like any new born baby, people can’t wait to see him and give him hugs.  Like any protective mother, I’m hesitant to let people in.  His immunity system is basically non-existent.   Perhaps one of the hardest part of this is that we aren’t kissing. First his mouth and throat were full of sores and hurt too bad. I masked even while in the room with him. After I finally started leaving the room, I was afraid that I might have been in contact with COVID and didn’t know it so masking was even more important. I think we kissed a couple times and then the next thing I know I start worrying that I might have something that he couldn’t fight so we stopped. A quick hug for our limited visitors is all we can allow for now.

It will be a year before they can give him his childhood immunizations over again.  Even a cold could be devastating for his progress; let alone COVID.  For at least 100 days, he isn’t to be in close contact to young children or pets.  He can’t be around anyone that has recently been given a live vaccine.  He can’t be around live plants or flowers.  There will be no lawn mowing or gardening next year.  Being on the farm near animal waste and dust and dirt will be out of the question for probably a year. 

This year will not be the birthday celebration that we might have wanted for him but it will be a great day to celebrate a life without pain and the promise of a bigger and better celebration next year.  We won’t be going out with friends but hopefully a trip home for a few hours will suffice.  It looks like the weather for the upcoming weekend might be nice so we can imagine ourselves on a vacation adventure while we enjoy the views from our recovery rental home.     

Scott enjoying peaches from our tree; canned by a neighbor

Help Wanted

Very few people would answer an ad for a caregiver.  Wanted: Individual willing to drop everything to care for ailing individual.  Must be thick-skinned, have a strong stomach and have a good understanding of technology; a multi-tasker.  Have good transportation and be willing to work nights and weekends.  Applicant must have the patience of Job and be as stubborn as a mule; determined. No benefits, vacation or sick time, no salary. 

Thankfully I was able to retire and commit to being with him at the hospital for the entire time.  That itself created issues.  Retirement meant my insurance coverage ended on August 31st.  I signed up for COBRA insurance the minute I got the notice and paid the premiums on-line as soon as I could create an on-line account.  Still, as we were preparing to leave the hospital on the 19th of September, administration was in a bit of a panic to find that my insurance had been terminated effective Sept 1st.  They hadn’t billed for the transplant yet.  Yikes!  I’m sure that if I had let someone charge up hundreds of thousands of dollars only to have their “credit card” denied on billing day, I would probably be a little freaked out myself.  It took a little doing but we managed to leave that Monday with supplies added to our hospital bill so I didn’t have to put out any ransom money to leave. 

I found the perfect coaster

The technology piece is overwhelming.  Test results, insurance, billings, appointments, lodging, you name it; it requires a level of computer savvy that I fear the average person might not have.  With technology comes an enormous amount of patience and a lot of “fake it until you make it”. 

Caregivers should be detail oriented; as you must be able to administer medications several times a day.  Before admission to the hospital, he had so many pills that it required a spreadsheet.  That was only the tip of the ice burg.  Currently, it’s a total of 41 pills, creams, drops, liquids and one 8-hour IV each day.   

If you are like me and typically a very organized person, additional stress comes into play when you begin living out of your vehicle.   Living in his hospital room with him for the first twenty-two days, followed by 7 nights in a hotel alone and 7 nights in the Airbnb in Dexter. I had food, cookware, medical supplies, medicines, clothing, electronics, business files, you name it; all in the Traverse.  That all had to be transferred to the store van so I could take the Traverse to the Body Shop for some repairs this week.  Driving to the hospital in the work van yesterday, a vehicle kicked up a stone in a construction zone and now I have to file a glass claim and deal with that problem one of these days.  One step forward and two steps back. 

Unless your memory is better than mine you better be a good list maker.  Being home one day a week to use the printer to print paychecks and the schedule or a report you’ve been working on all week or grab that file you need for next week’s project takes some skill.   What to take home, what to bring back to the rental. 

Money management.  For the first time in years, I need to keep an eye on my bank balance.  With most our bills on auto-pay and neither of us drawing a paycheck currently, I need to make sure and move money around before the well runs dry.  Thankfully, we have very few bills and we manage our money well so it’s not a matter of where the money will come from; just which account.  We are very glad we have money squirrelled away and our friends and family have been very generous with their gifts of money.  I can’t imagine having to worry about money on top of everything else.

Another necessary trait for a successful caregiver would be determination.  Today was a free day.  Our first full day at the Duck Lake house without appointments at the hospital.  Sounds great but some how it’s 5 p.m. already.  I made oatmeal and made arrangements for back-up care for Scott tomorrow.  That left the majority of the day to tackle Scott’s on-line application for social security disability and look into our AFLAC claims again.  And yes folks, it took all day to lock myself out of Scott’s SSA account, get it unlocked and make a dent in his claim for disability.  I end the day further ahead than before and more determined than ever to get this accomplished without the aid of an attorney. 

Unfortunately, my AFLAC claims don’t appear to be any closer to being in my bank account than they were weeks ago; despite involvement from my agent.   Oh – and I managed to place my first Shipt order today.  If I’m not careful I might get in step with the times by the time this is all behind us.  At least a heck of a lot closer than I planned on being. 

Another trip back to the hospital for platelets and blood

It would be pretty easy to crawl up in a ball and let frustration and depression take its toll on both of us.  Instead, I am constantly reminded that things could be worse.  As I waited in the lobby for an hour and half for them to fill a prescription for melatonin (something that non-patients can just pick up at Meijer or Walmart), a young man was yelling at his wife because he couldn’t get his pills (opioids) refilled at the pharmacy; like yelling at her would fix that. The nose surgeon’s office needed to talk to Scott and he was upstairs finishing his blood transfusion; I wasn’t on their list of authorized people to talk to. So I had to give up on the scripts to head upstairs; returning my pager. Not before standing in line behind a woman fighting with her colostomy bag while trying to pick up her own prescriptions with her IV pole and dressed in her robe and slippers.  I left frustrated but reminded that things could be worse.       

Finally, the job requires love.  A kind of love you can’t buy.  That’s not to say that there aren’t people out there doing this for a living; but they certainly aren’t getting paid what they are worth.  Particularly those working for patients that have lost their will to live.  Scott has kept a very positive attitude.  At his worst he is quiet and unresponsive; very little negative talk or orneriness.    I don’t know what I would do if he didn’t have such a strong desire to get through this and on with the rest of our lives.  I can’t imagine being in a loveless marriage and being called upon to take this assignment.  Thankfully, I feel like I’m one of the lucky ones.