Our Love Story – On Pause

Summer 2021, doing double duty was getting to be almost too much so we decided to go to a financial advisor to look at when I might be able to take early retirement from my full-time job. I thought I was anxious to concentrate on the convenience store/deli and grow my catering business.  We were thrilled to hear that we were actually already in a position financially for me to retire. Great news but yikes! I wasn’t mentally ready to pull the trigger.  I was really questioning walking away from the insurance benefits and my customers at that time.  We decided I would finish out 2021 then give my boss notice after the first of the year.  For so many years my job was who I was and I needed time to work my way out of that.

Scott and his brother operate the farm together and always took turns going on vacation in July.   While managing the farm single handedly for a week, Scott found himself handling a series of unfortunate events that caused higher than normal levels of stress.  Fall on the farm always meant a very busy silage season and 2021 was no different.  Day after day of feed being delivered into the late-night hours and being processed to ensure it would remain a safe feed store for the animals in the coming year.  After the normal month or so of that, Scott found himself suffering severe back pain from what we believe stemmed from the long hours in the equipment and likely lingering effects of the stress he experienced in July. 

Eventually back pain turned to hip and groin pain, moving to his chest around Christmas time. He passed his stress tests with no problems and tests showed his heart was in great shape. It was when his pain morphed into severe headaches while we were trying to enjoy our annual sun-cation in Cozumel in February of 2022 that I started to panic. I really feared he was going to not make it through the night a couple times; something was seriously wrong.  Unfortunately, even though regular visits to his hematologist showed that his platelets were dropping despite taking him off his medication no one realized that all these problems were all related.

After our return from Cozumel, we immediately sought advice from our local family doctor followed by another appointment at his Hematologist/Oncologist (H/O) of ten years.  While the specialist chose the wait and see in another month approach, thankfully our family doctor recognized that Scott was a very pain tolerate man and that if he was coming in there was something seriously wrong.  The situation was not in his wheel house yet he continued to order a variety of tests to rule out possibilities. 

It didn’t take long before news of his health issues started circulating through the family. Still wrestling with memories of losing Gordon (Scott’s father) to Multiple Myeloma in 2018, there was chatter pretty much immediately about our need to go to Mayo Clinic. Everyone felt that we needed to leave our local health care network that hadn’t been able to save dad and pursue answers from the experts. The H/O’s failure to realize the severity of the situation led me to push Scott and pursue the recommendation to get an appointment at Mayo. 

Scott, son Cam (center) and brother Steve (right) wore matching shirts to Gordon’s visitation in 2018

Today I whole-heartedly believe that if we had stayed with his local specialist that I would be reflecting only on a life that had been and not a future.  Weight was falling off him, his pain was unbearable and now traveling; resonating in different parts of his body all in the same day.  After years with his blood platelets nearing levels of eight to nine hundred, they were dropping without the aid of hydroxyurea and now heading into dangerously low levels.  His hemoglobin was also dropping rapidly. These were also key indicators of Myelofibrosis. Finding the enlarged spleen was eventually the final clue that led to a diagnosis.  

It’s true that at the time we were frustrated with the insurance company as they were seemingly holding up the process.  In hind-site I think they were looking for our specialist to work through some basic groundwork before ordering expensive tests such as the PET scan and that was not happening. 

Before going to Mayo; early in the process of elimination, potential causes were uncovered and systematically ruled out. I’m sure that is pretty common.  You will likely receive findings that are inconclusive or lead you down the wrong rabbit hole.  For Scott, early tests showed findings of metastatic bone cancer; thankfully, ultimately they determined that was not true. It’s best to keep an open mind and not get too wrapped up in any single test result as one result can be from many possible causes.  While waiting for answers, I did a lot of my own research as a coping method.  I realize that could work out badly for some but for me it was helpful.  I have pages of research information and it has paid off several times over the months.  Knowing what the blood numbers meant and being familiar with a lot of the terminology allowed me to add input and know what to tell doctors about his symptoms as things changed throughout the process.   I also read that if you find “bad” or scary information that you shouldn’t share it with your patient. The less they have to worry about the better. I found that to be very true. Only a fraction of what I read or worried about actually happened so I’m glad I never shared it.

I think it took about a month for us to get into Mayo Clinic but it felt like forever.  Once we got to Mayo Clinic, our insurance was no longer an excuse and tests started happening on day one.   You aren’t required to have a referral to get in. Prior testing is reviewed and not wasted time. When we decided to have his transplant done at University of Michigan, all the information from both Bronson and Mayo Clinic was all able to be shared through MyChart and available for doctors at U of M. 

Back at U of M for platelets yesterday

As I reflect on the past year and most importantly the eight months, I think the most critical things I can pass on is to be open to searching out the experts, don’t feel trapped by your local health care system. Stay positive no matter the situation.  If family hadn’t pushed us to look outside of our normal boundaries the outcome may have been much different.  A person can’t do this alone either; having someone to help give doctors an honest account of the symptoms and situation is critical.  When in pain, you can’t possibly remember all that is happening to your body; you’re trying to get through the pain and not memorize what it was like.  Finally, we have heard numerous times that Scott’s continued positive attitude and drive to recover from this will take him just as far as all the procedures and treatments.  Mind over matter. 

I am also amazed at how things have a way of working out.  What if I had retired and no longer had the premium insurance coverage that we so thankfully have today.  Ultimately, delaying my retirement will allow us to keep this proven coverage through the end of next year.  What a Godsend.  The series of life’s unfortunate events unknowingly leading you to a brighter future.    

Steps in the Right Direction

Being that only 22,000 people undergo a stem cell transplant in the U. S. in any given year, it makes sense that few of us know what it entails.  It’s certainly a process.  There might not be twelve steps like the road to recovery for an addict but certainly it comes with its own hill to climb.  Step one might be diagnosis; determining that you can’t continue the way things are.  Step two was decided for us when we got the call that drug therapy wasn’t going to be enough; a transplant was Scott’s only option for recovery.  While we couldn’t have been more satisfied with the care he received at Mayo Clinic in Rochester, Minnesota we quickly learned that a transplant there would require living there for the 100-day process.  Our blended family consists of many Michigan State University graduates, so turning to University of Michigan was a little challenging but it was a decision that had to be made; step three.  Then step four was finding him a donor.  After sibling testing proved unsuccessful, the search went international. 

It’s amazing to think about all the moving parts in this adventure.  Planning for the process, bone marrow biopsies and getting clearance from the dentist and eye doctors.  Finding the ideal donor among the near 9 million people in the registry and harvesting those life-saving cells. Shipping them over 4000 miles while maintaining a temperature of negative 190 degrees or less.  Scheduling the thousands of people working each day at Mott Hospital.  Everyone from doctors to the cafeteria staff to maintenance.  Nurses administering not only a multitude of drugs each day but actually transfusing those precious cells of new life; step five.  Techs monitoring all the patients in-take and out-flows; taking vitals and changing the sheets.  Laundry. Trash; and lots of it. Hundreds of tests; taken, processed, billed out and posted to MyChart – the Holy Grail of medical communication. 

Sunday, I noticed a new report had popped up regarding Scott’s progress on the engraftment process.  Interesting enough, last week they were beginning to wonder if the process was working, since he was requiring so many platelets.  Looks like the results came back to show that he is 100% engrafted.  Meaning his donor cells have totally taken over.  This feels right, since we are seeing his rash and most of the “battle” related symptoms going away.  Step six; Hail to the Victor!!

I read that the adult human body contains about 10 pints of blood.  Interesting since we estimate that he received 20-25 pints in the past month.  He lost some with the bloody nose and when they took that spot off his nose but most of it must have just been burnt up like rocket fuel.  The body really is an amazing thing. 

Ding Dong we rang the Gong!

After much planning, we left Room 45 and the halls of 7 West at 2 p.m. yesterday with the hopes of never returning.  Step seven.  We had a visit from the traveling nurse this afternoon and she helped me start his first home IV infusion.   He wears the pump and bag of magnesium in a fanny pack and it will run for 8 hours.  We are already scheduled back in the out-patient clinic for platelets on Wednesday and Friday.  The nurse will likely return on Thursday to supervise my first solo dressing change and after that we will be on our own.  

Not only can I report that he has been released but we have also worked out the plans for the rest of our home-away-from-home stay.  I think I already mentioned the problems I was having trying to find one place for the remainder of the 100 days.  We were looking at having to move out every weekend and either moving back or to a different place since weekends in Ann Arbor were all booked weeks ago.  While searching I happened upon a place on a small lake near Springport that was wildly out of our price range.  That led me to think a little more creatively and realize that a family member of a friend had a summer place on Duck Lake.  Long story short, they have graciously agreed to let us rent it for the next couple months and we will not have to move multiple times.  We leave our Airbnb on Saturday morning and will head to Olivet to recuperate.  We are so happy about this arrangement and thankful for their willingness to help us out.  It’s close to our friends and my old stomping grounds.  It’s remote and quiet.  We will be able to enjoy some country road cruises while keeping a low profile during this time of infant immunity; the road to recovery and step eight. 

Somewhere along this path of growth and recovery is coming to grips with the fact that sometimes we need help.  We’ve had so many people ask how they can help and accepting money hasn’t been something we have been comfortable with.  I’ll have no choice but to ask people to sit with Scott so I can tend to things at the store occasionally. While neither Scott or I are working, we have managed to position ourselves to financially weather this storm.  Realizing that there are people out there that still wish to help out, daughter Alli has come up with a way that is easy and something that will certainly make life easier away from home.  She has gotten us a Shipt account so that we can order groceries and necessities from Meijer in Charlotte and they will be delivered directly to the house.   It’s a great idea since Scott isn’t supposed to be left alone more than 20 minutes unsupervised and it will take me that long just to drive to the store.  Those that feel compelled can put money into our grocery account making things easy for us and them.  We can do that; baby steps, nine and ten. Accepting it and then being ok with it.  

Reality Check

I have had a love hate relationship with the Bachelor series even since it started.  Every year I swear I will not waste my life again and watch it – but I end up binge watching it on Hulu while doing bookwork.  When I arrived back at the hospital Monday, the one nurse was teasing him about watching the Bachelorette Finale this week.  It was like wait – what?  I’ve missed an entire season without even realizing it?  How did that happen?   I really am operating on fumes if I didn’t know this was going on.

Today marks the 30th day of life post-transplant.  Thankfully he has had no bone pain since that day and he is almost completely off the opioids.  This week his mouth has healed up but he still can’t stand the smell of hot food.  Most of his meals consist of cold cereal and yogurt.  He has almost no appetite and nothing sounds good.  They are basically forcing him to drink milk shakes twice a day for the calories.

Without a shirt on, his back looks more like a Halloween decoration skeleton than the strong strapping man I married.  He can hardly keep his pants up and he’s most comfortable hiding inside the warmth of a baggy hooded sweatshirt.  I will have my work cut out for me putting weight back on him while trying to take it off me.  Sister Kathy brought her yummy jam bars last Saturday and his idea of a splurge is eating half of one of them with his yogurt.  Guess it’s a start. 

Daughter Alli and husband Luke stopped by for a few minutes today.

No sooner had the mouth and nose healed up that he developed a terrible rash.  His markers for allergies are heightened; so it’s possible that he may have taken on some allergies of his donor.  Nurses told Nichole that they once had a patient that had a terrible reaction to a peanut butter sandwich and it was later determined that the donor was allergic to peanuts; so, it happens.  The rash is also a common symptom of graph versus host disease.  Like it sounds, it’s the side affect of the battle between the remaining cells vs the new cells.  A certain level is expected but serious cases will hinder the recovery process. Either way the treatment is the same and most definitely it doesn’t help the mental state of mind when your skin looks and feels terrible and the itch is unbearable.   

He can’t seem to sleep; or if he does, he still feels exhausted in the morning.  I think he’s catching a few winks in the early evenings but then the midnight meds and vitals wake him up.  Then there’s the blood draws at 3:30 a.m. and platelets at 5 a.m.  So that leaves him dozing off and on until noon.  He’s usually awake enough about the time the Gun Smoke marathon starts.  I think that runs for 3 hours or so.  Then it’s 3 hours of the Andy Griffith Show.  After that is Everyone Loves Raymond.  Once in a while he mixes in a football game or just shuts it off hoping to sleep a little before the next round of meds and vitals. 

Days are awkward.  He really doesn’t feel good enough for company; even mine.  I struggle to keep busy while being totally silent.  I don’t have the energy to go walking like I did when Nicole was here.  Misery loves company for sure.  It’s a very helpless situation.  Days go by that I don’t feel like I’ve done any good but it never fails that I leave for a day and things happen that I should have been there for.  I feel like every return visit to the hospital is like a first date.  Awkward, wearing my mask because I’ve been out in the world for a day or two.  Afraid that if I hug him too hard that he might break.  Not knowing what to say.  Just trying to get a smile out of him.   Wondering if things will even be the same again.  

Like Scott’s body, the road home is under re-construction.

Tonight, I spend another rare night in Vicksburg alone.  It should feel good to be home.  But it doesn’t.  This isn’t home – this is a house I am familiar with; one I know where things are kept.  My home includes a tall broad man with a smile in his eyes and strong hands.  It also includes a big lug of a dog with bad breath and stinky farts.  He’s dad’s couch buddy in the morning and mom’s cuddler at night.  I watch a couple stupid chick shows that he wouldn’t want to watch.  I turn on our favorite music.   I’m not tired; maybe that’s my body’s way of avoiding our bed.  It’s just another reminder that he’s not here.  I can’t lie; being here is hard.  We still have a long way to go and as hard as we try, no one can really help me anymore than I can help him.   It’s just going to take time and a whole lot of patience.   

Hotel Humor

Booking a hotel absolutely stresses me out.  Why?  Because not a booking goes by without some type of problem or a “WTH did I do wrong now” moment.  I did a fair amount of traveling alone for my job.  Once while on a work trip, I entered the room I was given, only to catch a glance of a gentleman using the bathroom.  Holy moly!  I quickly slammed the door and returned to the front desk for a new room assignment.  Probably scarred us both for life.  I don’t spend thirty seconds in a hotel room without the flipping the safety latch; hopefully he doesn’t either. 

I tend to spend an unusual amount of time searching for that perfect hotel price and location.  Always fearing that the minute I pull the trigger and book, a bad review will surface or a better deal with pop up.  Unfortunately; that often leaves me forgetting where I ended up booking; and who with.  Did I end up booking directly or go with Booking.com or Travelocity?  Where’s my email confirmation?  Or was it in a text to my personal phone or did I have it sent to my work email?  Where is it!!  More than once I have been convinced that I knew where I was going only to find myself presenting myself at the wrong hotel.  Oops!  Back in the car headed to their neighboring competitor that was probably $5 cheaper! 

Then you get to your room and there’s always something you would rather not deal with but it’s one night so why go through the hassle of moving all your stuff only to find the next room isn’t any better.  You can pretty much be guaranteed that either the heat, air or refrigerator is going to be loud; flip a coin.  Or you get to your room only to realize they’ve recently shampooed the carpet and the floors are soggy wet.  Thankfully, I always travel with my flip flops so I just make a practice of never taking my shoes off in a hotel room.

My ’55 Bellaire – ain’t she a beauty?

The best one was the time I booked a room in South Haven for our anniversary.  We enjoyed a leisurely drive over there in the ’55 Bellaire and went to check into our hotel before dinner.   Only to find that I had booked for the next night.  The clerk so pleasantly tried to calm me by saying there was no harm done, they would have the room ready tomorrow when we came back.  That was a hard pass; we weren’t coming back on Sunday night and of course there wasn’t a room to be had anywhere so we ended up driving home in the dark with the headlights flickering off and on.  A real nail biter. 

Last week’s hotel was no exception.  I don’t even want to know how many hours I spent looking for the perfect hotel for Scott to come out to.  As you know, he was never released so it really didn’t matter.  The room was much smaller than the pictures led me to believe it was but it was clean and the price was right for what it was.  The lock was a little sketchy but I figured out before having to go to the front desk.  The upstairs neighbors weren’t too loud and even though I saw dogs in the window when I left in the mornings, I never heard them barking. 

My “WTH was I thinking” moment came at the end of my stay.  Just when I thought I had broken my pattern of failed hotel bookings.   My daughter’s birthday was Friday the 9th and I knew I couldn’t get into the Airbnb until Saturday the 10th.  It was while I was contemplating spending the night with her on Friday night rather than driving back late that I decided to look at my booking information one more time.  Sure enough; I had booked the room from Sept 2nd to Sept 9th.  My Airbnb was for Sept 10th to Sept 24th.  Sounds good right? Wrong.  When you check out by 11 a.m. on the 9th it leaves you on the street for the night of the 9th.  Thankfully it was Marlena’s birthday and I was able to load up my car and cooler and stay with her on Friday night.  Homelessness avoided. 

Lucky is our sole surviving chicken – a tough old gal and she too has goals; she aspires to be a house chicken.

I ended up staying at home Saturday and Sunday night which should be relaxing but it really isn’t.  When you know that it’s only a matter of time before undesirables figure out you aren’t living at your home, it’s a little scary to pull in the drive in the dark and enter your house that’s been vacant for a week.  If that isn’t enough, it has stormed during the night every night I’ve returned home.  It was heart-warming to be greeted by our pet chicken each morning.  I found her peaking in the office door or windows first thing in the morning; looking for me.  I went out and called for her and she comes waddling over – priceless.   She stands at the screen door and talks to me.  She’s not a dog but she will do in a pinch.  Our dog Zeus probably thinks we’ve left him for good.  He’s living the good life with Scott’s daughter so he may have already decided to not come back home to us when this is all over. 

You might be asking yourself; what was the point to all this useless information?  What does this have to do with cancer? I think it goes to show that while I may have some of you fooled into thinking I’m a confident, independent and intelligent woman sailing through this world of adversity, in reality I make just as many mistakes as the next person; maybe more.  An average person. Thankfully, I am just too determined, ok stubborn, to let a few mistakes keep me from getting back up and trying again until I get it right.   


As we near 30 days in Scott’s all-inclusive resort aka Mott Children’s Hospital I find myself reflecting.  I think maybe I’ve grown as much as Scott’s cells have.  As you can imagine, having so much time on my hands has been very difficult.  Wanting to help and having Scott not be receptive is a hardship.  

I’m navigating I-94 alone without fear.  I’m finding my way back to my hotel making the 10-turn journey without the help of my GPS.  I can get to and from all parking garages at any time of day or night without getting lost.  I must be exuding confidence because not a day goes by that I don’t find myself giving out directions to lost souls.  All I need is a different badge and a maybe a smock!  I am much better at reacting to unexpected bodily functions without feeling ill myself.  I can pause the IV machine to stop the incessant beeping until nurses get there, and I feel confident enough to administer his IV infusions and care for his Hickman catheter when he is released. 

Despite the temptations of all the snacks people have blessed us with; I have limited my weight gain to a couple pounds by making a concentrated effort at watching my intake and burning calories by walking with my new friend Nicole.  Without realizing it, she has pushed me to walk the equivalent of a 5k almost every day without passing out.  Sadly, Scott hasn’t been able to venture farther than the adjoining hallways for the past 30 days.

The extent of Scott’s adventures these days.

The hospital insisted that I book a place when they started talking about letting him out last Friday.  Thankfully the gifts of money we have received are covering the cost of the hotel but in hindsight, it’s an expense we could have avoided.  It has been nice to leave at the end of the day and return to the private space.  It’s still a shared space with the giants stomping around in the room above me but at least there aren’t people coming in and out of the room all hours of the night.   While Scott has been confined to the horrible hospital bed or over-sized recliner, I’ve slept in my own bed four nights (which is also kind of scary), the hotel for five nights and 21 nights on a well-worn hospital couch; but who’s counting. 

Before arriving, I mentioned in my blog my desire to find new friendships while in Ann Arbor.  That prayer was answered when we met Steve and Nicole in the sunny common area one day.  Steve also suffers from a rare form of cancer that is treatable with stem cell therapy.  Thankfully for them, Steve was sprung Wednesday.  Not before she and I were able to spend hours sharing stories and providing each other with a much-needed understanding ear.  Having someone that shares the process and the new terminology we’ve learned has been priceless.  She checked in with me yesterday already and it was nice to call her back and let her know that Scott’s ANC had reached a 1 and his platelets had risen to 17.  Whoop! Whoop!  Try as they may, friends and family are not in a place to know what in the world that means.  There’s something really bonding about going through this process together.   

Not realizing we needed to reset our devices DAILY to use the hospital network caused us to burn through our data plan in record time; requiring us to purchase additional data but not before our phones got shut off.  Another learning curve under my tool belt.  In looking over my Verizon account the other day I was shocked to see that I had sent and received 969 texts in 20 days.  Guess that tells you how I spend a lot of my free time! 

One of the many cards we’ve received. Love it!

Scott keeps busy with naps, walking the halls when he’s not taking in or expelling too much blood, and watching Andy Griffith and Everyone Loves Raymond marathons.  He’s been dealing with bloody nose issues for the last couple days so that has limited his mobility.  Just a year ago he was working 16-hour days for a month straight pushing silage; the annual stockpiling of feed for the winter.  His absence has created a hole at the farm.  Brother Steve has realized that their unspoken brotherly connection is something not easily replaced.  I always knew that they were remarkable in the way they always just knew what the other was going to do and worked independently as a team without talking about it.  I can’t imagine the amount of instruction and thinking out loud that training Scott’s replacements is taking.  We can’t begin to thank him enough for all that he has been forced to manage during Scott’s absence. 

We are so grateful for the people that have risen to the occasion and stepped in to help us.  Family members stepping up in so many ways and gifts of money from all directions. We have neighbors mowing our lawn and canning our peaches.  Raising my butterflies and just keeping an eye on things.  Several people are helping at the farm to make sure business continues there.  Employees at my store are taking on more hours and responsibilities to ensure the store continues to be successful.  Scott and I aren’t the only ones growing and coping.  I’ve learned that in the midst of uncertainty many stars are born.   While the last year has been difficult at best, I don’t think I’ve ever felt more capable.  Living proof that adversity leads to growth and truth to “What doesn’t kill you girl makes you stronger”. 

Too Close for Too Long

Aug 31st – Day 20 in the hospital. A spacious private room but still less than 300 square feet. Our commute is nearly 2 hours each way so I’ve only gone home twice; once after 10 days and then again after 7 days.    Being home for a short period requires a lot of planning so that I can get everything done while there.  Last Sunday, I went home and got the van to do some store shopping, priced and stocked what I bought and prepped stuffed pork loin and burritos for lunch specials for Monday and Tuesday.  Went home and processed payroll, paid bills, did laundry and bookwork until midnight.  Monday, I got up and went to another distributor only open on weekdays, stocked $2k worth of pop, cigarettes and candy and worked the lunch shift from 10 a.m. to 2 p.m.  After that I hit the bank and post office to mail our confirmation to continue the health insurance we so desperately need right now.  Home to shower and throw my bags back in the car to return to the hospital by 6 p.m. 

The Caregiver’s Day Off

As you can guess, this trip allowed for NO down time or relaxation.  It wasn’t five minutes after landing before he was telling me that he was doing just fine without me there and that I wasn’t needed.  A real punch in the gut after running my ass off for the last 30 hours.  The moral of that whole story is to make sure you allow yourself time to decompress while you are out -regardless of how daunting your TO DO list might be.  You need it. Your patient may not get the same round-the-clock watch while you are gone but they will be fine and they probably need that time to operate independently as much as you need the break.  Lesson learned.  Today I plan to pack up and go home until Friday morning; giving us both a much-needed break before having to spend a week in a hotel room together.  It will be nice to be out but it will be a little frightening being on our own to cope and still in confinement.   

Going into this, we knew that it was a going to be a long process.  He won’t be out of the woods until 100 days after the transplant; maybe longer.  Day 100 falls the day after Thanksgiving.  When we met with the team at U of M, we knew that they would expect us to stay within 100 miles of the hospital for 100 days.  MapQuest our address and Mott Children’s Hospital and you get 102 miles, but ask for a 100-mile radius of Ann Arbor and we are inside it.    In addition, you agree not to leave the patient alone for more than 20 minutes at a time.  I’ve burned HOURS looking at hotels, apartments, VRBO’s and Airbnb houses in the event they require us to stay closer to Ann Arbor.  So far, I’ve booked a house in Dexter (about 10 miles from Ann Arbor) from Sept 10th to Sept 24th; hoping we can get a pass after that.     

Daily Blood Count Charting

This morning his ANC was finally on the chart at .3 – in order to be released it must be over zero for two days in a row.  He’s very tired and his platelets are only 11 so he will receive more of them again today.  They are still hopeful for a release on Friday.  While that sounds great, it just means living in a hotel for a week until our Airbnb is available.    Even with the money gifts we have been given that can go towards that expense, it’s hard to part with over $10k when we already have a beautiful home to recover in.  I have the hotel booked starting Friday night and IV training scheduled for Friday morning.  For someone that isn’t needed; I sure feel like there are a lot of responsibilities on my shoulders.   Asking for help is not my strong suit and while people have been more than happy to offer help it’s still not easy to make that phone call and ask for it.  Maybe practice will make perfect. 

The Rest of the Story

Aug 31, 2022 – After posting the Hallmark version of my report, I think it’s necessary to add some meat to my potatoes and tell “the rest of the story” for my readers that are coming here to gain insight on how to cope when faced with the realities of cancer.    

There have been no pictures lately because the sore on his nose is nasty; large enough that you fear a gremlin will crawl out of it.  I’m concerned that it too might be cancerous but we have them look at it each day and they still think it will heal up.  It doesn’t help that the mask rubs right on it when he has to wear one.  I am supposed to mask at all times, even in the room with him but he is able to wear his only in the halls and when the doctors are in the room. 

They’ve been able to get him off the morphine which seems to have been the cause of most his involuntary movements, being half awake and half asleep and talking in his sleep.  He’s able to do much better with just the long acting Oxy but during the days of severe mucositis (tons of phlegm causing the mouth sores) he had to have some short acting Oxy added back.  They were concerned that with his bones being so scarred that there was only room for 5% blood flow, that the pain could possibly continue after the transplant but he has not had any bone pain since transplant day.  That part was an immediate improvement. 

Burger & beer at Senior Frogs in Cozumel

Another issue that I have also talked with others about is the patient’s heightened sense of taste and smell.  Along with not thinking that anything tasted good after the transplant, Scott suffered the inability to tolerate the sounds of anyone eating or the smell of food.  This started while we were still at home.   When you cook for a living and eating out together has been an important part of your relationship, it’s really depressing when you find yourself unable to cook or eat in your own home.  I had a couple people tell me that for them it meant taking their food into the bathroom to eat so the patient didn’t smell or see it.   It sounds trivial but it makes you cry.    

It is certainly a challenge to walk the halls and see each person on the ward dealing with their own version of hell.  The couple we met about ten days ago is struggling.  Lots of signs posted on his door made us concerned.  Thankfully his wife saw us out walking last and came out to talk to us.  He is not able to eat at all and like several people in the ward is suffering with C-diff.  A bacterium that happens to hospital patients and is very contagious.  Scott was flagged suspicious at one point but was thankfully cleared.  After seeing Scott in the halls doing so well, “Steve” was feeling down with his progress but we were able to assure his wife that Scott too has had his problems throughout the journey.  I was trying really hard to “cheerlead” Scott and he shut me down by asking me not to brag him up; that everyone here is trying their best; they are all superstars.  Saying the right thing at the right time is an impossible challenge right now.   

Scott comments that at least I don’t have to feel the pain and agony of the cancer and its side-effects and that I need to cut him some slack.  In my mind, I’m just trying to make sure he does what they are asking him to do.  One can’t understand what the patient feels, but being on the side-lines unable to fix it is equally difficult.  He can have pain medications and drugs to help him sleep through it while you sit and watch; helpless.  You find yourself waking up when the nurses come in to hear what they are seeing or finding.   If you choose to take some sleep aids, then that’s the time that you find yourself needed during the night and you are too groggy.  Thankfully, the mind and body are wonderful things.  We wake each morning with new issues or challenges but luckily the pain and suffering of the days before are already fading.

Day 13

Well, it’s update time again.  Hoping that today will be lucky; Day 13 after transplant. 

The last methotrexate (chemo drug) treatment was two days ago.  Side effects of the Granix shots seem to be lessening a little.  Granix is given to help with the production of new white blood cells that ward off infections.  The sore on his nose looks to be clearing up a little.  He’s back to walking after taking a couple days off.  While he was holding on to the fact that his father never lost any hair with chemo, the nurse on Day 10 told him it was pretty much unavoidable with this regiment.  Sure enough; the next day, he started to see evidence of hair on the pillow.  That was an easily fixed with the hair clippers.  Not a big deal since he’s had a buzz cut the last few summers any way.  He’s hanging on to the shortened mustache and who knows what it will take to tame those eyebrows; guess we will find out. 

He hasn’t lost his sense of humor; while we were out on a walk after I got back last night, we stopped at the window seats.  I noticed something that looked like a tuft of hair; his hair.  I commented – if I didn’t know better, I would say that’s your hair on the floor over there.  He grinned and said “it is – I left it there as a present”.  Guess we will see how good the cleaning crew is here. 

He’s still getting blood transfusions and platelets almost daily to keep his hemoglobin over 7 and platelets over 10.  His white counts were finally on the board today at .3 so that’s a good sign.  Things are as they expect to be; it’s just a long process.  Rome wasn’t built in a day so we continue to try and be patient as he works through the side-effect of the day. 

Sunday, I had training on Chester the port dummy.  I’ve graduated to wrapping Scott’s Hickman site and lines before he showers and I changed his dressing with assistance once.  Before we leave I will have to learn how to give him the magnesium IV and flush the lines and change them.  Never saw all that coming, if we’ve learned anything along the way it’s when you have to – you just do.    

Happy Anniversary

August 23, 2022 – When we got married at the farm on the hottest day of the year; we never imagined ourselves celebrating our 8th anniversary here.  Chilling out in the air-conditioned comfort of Mott Children’s Hospital complete with room service; a room on the 7th floor with a view. Today is Day +6 (post-stem cell transplant) for Scott.  He’s no longer taking long-acting morphine or short acting oxy; his need for pain medication has been greatly reduced already.

For those following to learn more about the transplant process, he had his days of nausea and is still working through off and on intestinal issues.  My greatest fear was having several days of vomiting to witness but they have so many potions to tackle the nausea that he didn’t have to suffer that way for long.  Medications have given him high blood pressure and he is seeing a change in his eye sight so we had to invest in a different pair of readers.  He’s been up and walking regularly and his appetite is slowly improving as his sore throat lessens.  This morning he received another gift of platelets.   Insomnia is a problem most nights so then some days he can’t stay awake to finish a conversation. 

Our anniversary picture – hopefully next year will be in a more exotic location.

We’ve talked to others in the halls and even if they are here for BMT it sounds like everyone has a slightly different story and regiment.  Others have taken chemo before coming here while Scott didn’t receive any until he was admitted here.  The number of days of chemo also varies depending on the type of cancer.  Scott is up and dressed each day and walks a lot; something fellow bloggers have indicated they felt was key in getting sprung from here early. 

For me, retirement from my full-time job less than a week before transplant day has allowed me to spend almost all my time here.  I stayed for the first ten days before taking a break and going home for a day and good nights sleep.  Being with him 24/7 has been very helpful in a few ways.  While you can summons a nurse with your call button, usually issues are more time sensitive than the average turn-around time is.  Managing a tree of IV’s plugged into an electrical outlet makes urgent trips to the bathroom a bit tricky.  I have a power strip on my list of things to bring back with me.  That will allow him to go to the bathroom without having to unplug before taking off.  

Even when he’s not feeling chatty, he says the companionship has helped pass the time.  There’s a noticeable difference in the patients that have full-time visitors and those that don’t.  Walking the halls, it’s difficult to see the sadness in the eyes of those that are always alone; and their bodies seem to sink into the bed.  So even if your loved one has to work remotely; we certainly recommend having someone stay if you can manage it.  As the caregiver, you feel like a third wheel when your patient has scheduled procedures and activities; it’s hard to know where you fit in. But when the door closes and the nurses leave you are there to help out when needed.  Think of yourself like training wheels, your patient needs that extra stability you provide to feel safe after transplant.  Here the window seat converts into a bed that is probably more comfortable than the hospital bed and I’m able to use the same rest room and shower as Scott.  The nurses have been very appreciative of the extra eyes and ears I provide.  It feels awkward at first but you will get into a comfortable routine in no time.

Sitting right on the 100-mile limit from the transplant center, we are looking for housing for the next few weeks.  Nailing down the perfect place has been a challenge since we don’t know exactly when he will be released.  We will have to book a hotel in Ann Arbor for a few days once we know when he will be released.  Yesterday, I secured a walk-out lower- level duplex style home in Dexter for most of September.  Looking for housing whether it’s a hotel or a VRBO or Airbnb house, is challenging in the Ann Arbor area during football season; most places are booked on the weekends and rates are higher as well.    We decided against pursuing an apartment as after application fees and minimum lease requirements, we determined it would end up being more expensive than the other options and require us to move furniture and cookware.

Scott is heading out for a walk with Zeke in P. T. so I think I’ll go peruse the gift shop in search of an anniversary present.  He mentioned that he would like a U of M coffee mug.  I might be able to manage that.  We have some food-gift cards so maybe we can do delivery or a Grub Hub to put some flair on our menu tonight since we have no choice but to dine in.  What I would really enjoy would be a much-needed pedicure; if I can fit it into my busy schedule. It’s been years since I’ve treated myself to one and I think I’ve earned it.  Happy Anniversary to me!

Transplant Day – Check

It’s been a challenge for them to find the right balance of pain medicines so that Scott’s comfortable but not too loopy.  He’s seeing and hearing things and that’s kept him up at night.  He’s been providing us all with a good deal of entertainment.  At one point the room was flooding with water and I needed to run and get some towels, or better yet the time it was filling with worms.  He got after the cleaning lady for walking through all the cobwebs in the room and not taking care of them.  They are trying yet another regiment tonight and our hope is to ward off the boogie man and hopefully he can sleep better.  He hasn’t been able to work on the farm since February but he sure has worked a lot of cattle with Steve in his dreams since then. 

The pain in his body has retreated a little and now his sore throat is a problem.  Also, to be expected; were some temporary (we hope) changes or damage to his taste buds.  Nothing tastes good so he won’t eat.  We’ve ordered and tossed out everything from chocolate pudding to milk shakes, burgers to baked potatoes. Tonight, I put in an emergency call for Kathy’s chocolate chip cookie bars that have kept him going over the past few weeks. 

Left – very careful handling of the frozen stem cells.

Right – when frozen they looked pink. After thawing looked just like thin blood.

The actual transplant took less than an hour and started at 2 p.m.  The cells were brought into the room in a storage container similar to what is used to store semen in when artificially inseminating the cattle.  That conversation kept Scott busy while nurse Emily prepared the work area.  We were told earlier that the hospital requests 2-5 million cells be provided for transplant and our donor provided 4.1 million.  I could be wrong but I think each of the two bags contained 1 million cells frozen at 100 degrees below zero.  The extra cells remain frozen in case they want to give him more down the road.  Once removed from the container they had 15 minutes to infuse them.  The nurse manually pushed them through the line with a syringe rather than a machine.  She explained the potential side effects but he really had no pain or problems at all during the process; she did a great job.  There was a small break in between the two bags to check vitals and follow protocols but it went quickly and efficiently.  The preservatives used to keep the cells causes an odor to be released when pushed through the system.  A number of smells have been reported but the consensus of our group was that the room and Scott’s breath smelled like creamed corn.  Very strange!

The transplant is actually done by a nurse and not the transplant doctor. Very interesting process!

It was probably less than an hour later that he felt up to taking a walk around the “block” with the walker.  Tonight, we are watching the movie Tombstone for the 3rd or 4th time.  We don’t have access to a DVR yet so Yellowstone will have to wait until we get to the next stop.  They anticipate a few more difficult days as his remaining blood cells do battle with the new ones.  He is receiving a multitude of drugs via IV to combat the side-effects of his part of the process.  I anticipate him to get antsy and bored but he probably won’t be up for calls for a few more days.  The internet won’t support the picture frame the kids bought or Facetime calls but we can do that as soon as we find the next resting place. 

We continue to be so grateful for all the texts and messages of prayer and well wishes over the phone and social media.  He’s not out of the woods yet but we have a great team of people here keeping track of his every move and we are very confident that we are in the right place.