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.
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.
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.
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!
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.
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: https://www.youtube.com/watch?v=v2LixP7n_hM
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.
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.
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.
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.
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.
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.
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.
Initially I wrote to keep our friends and family up to speed on what was happening to their beloved Scooter. After realizing writing was a very therapeutic form of stress relief for me, I decided that I would really like to be a resource for others facing their own version of upside-down life cake. As I relay my experience as a caregiver and share our journey throughout the BMT process, I feel the need to circle back and provide a little look into what brought us together and what our lives looked like; both in the beginning and most recently, “B-M” – before Myelofibrosis. In my reflection, I can find happiness in retelling our fairy tale love story and what we were before this most recent journey on the roller coaster turned tilt-a-whirl. This two-part series of posts ends back where my blogging began.
The early ‘80’s found me marrying a crop farmer at the tender age of 19. I raised two children in a small town where everyone knew my name. Managing a successful career despite never finishing my college degree. I loved my customers and my job as an agricultural loan officer. I held public office as Township Clerk for 22 years and participated in multiple non-profit groups for over 25 years. Envisioned my contributions to this small community would eventually make me make me worthy of the coveted title of Grand Marshall of the annual Farmers Picnic Parade just before dying at the ripe old age of 90ish.
Simultaneously, in a small town sixty some miles away, Scott was raised by a family that took community service equally seriously. Everyone knew his name to the extent that the village park is named after his Great-Uncle. He left his small burg to pursue a degree at MSU like his parents. Instead, he met his wife there then left to pursue the trades. After some time on the East side of the state, they returned to his hometown to raise their two children. Working on the family farm nights and weekends while working full-time as an electrician. He built his own home on the farm the same year(s) that my husband and I built on my husband’s family farm.
Fast forward to 2011 where we were each serving as delegates on Farm Bureau’s State Promotion and Education Committee or “P & E”. Both very recently divorced with over 25 years of marriage under our belts. Neither having any interest in pursuing a second time around. Thankfully, this didn’t stop our mutual friend and committee leader from playing matchmaker. Oddly enough, I decided I wanted to pursue this potential match-up after spending time in the piano bar with his daughter at a P & E afterparty. He claims he knew I was the one when I wanted to ride in the tractor with him and help with farm chores. After a few months of dating, Scott finally broke the news to his daughter that he had been seeing someone. I’m told she immediately knew it was me that he had decided to date; and gone were her fears that he would die in the barn alone.
After a very public proposal on my 50th birthday in March of 2014, we married at the farm in August that year. In 2015, I landed my second job in ag lending and started working remotely while Scott farmed with his brother and father on the family farm raising sheep and angus cattle. In 2017 we purchased a local convenience store/meat market with the goal of marketing the farm meat products there and positioning myself to pursue a catering business in my retirement. We were very much in love and living the dream; taking vacations every February to some-place warm and summer vacations in Canada at the beloved family cabin on Lake Superior.
While many businesses struggled during COVID in 2019 and 2020, both the store and the farm were booming. Traffic at the store grew as restaurants were closed and we were able to continue providing affordable take-out food. As grocery stores saw shortages in the meat department, the farm filled the gap and locals filled their freezers with great local meat products. Scott was working 10-12 hours, seven days a week and loving life as a fifth-generation livestock farmer. I was juggling both my full-time job and managing the store. Thanks to my love of cooking and feeding the masses, my weight was more than I wanted it to be but I was healthy. Despite requiring medication for a diagnosis of Essential Thrombocythemia in late 2011, Scott felt great and appeared to be in perfect health. Our kids all had found their persons and before COVID, we had enjoyed great times together as a blended family of ten. We felt like the luckiest people in the world; with our own version of the Brady Bunch, we had it all.
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.
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.
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.
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.
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.
Am I the only one that wants to go back to a world without user names and passwords? Just thinking about them gets my blood pressure up. Handling all of Scott’s medical has just quadrupled the number of log ins and passwords I need. The latest twist is the need for a verification code to be sent to your phone in addition to all the other requirements. Winnie the Pooh would say, “oh bother”; my Uncle would say “What the World” but I’m a WTH girl or worse. If you haven’t already gathered, I tend to be a little rough around the edges but generally relatable.
All you need to do is do a search or have a conversation about something and it suddenly appears in your Facebook feed or in advertisements on your browser. We unplugged our Alexa because she was always butting into our conversations. You know she is listening without your prompts. If Amazon purchased iRobot for all the information the Rumba vacuum cleaner can glean while cleaning your home then nothing is sacred any more.
Everyone needs a log in and password now; but banks take it to the next level. They are required by bank law to make getting your money back out of their bank as difficult as possible yet not quite impossible. I currently bank with five different banks for different things /entities and sadly, none of them offers all that I am looking for to entice me to move all my business in any one direction. They all have policies that I feel hinder my ability to do business with ease. And enough with all the surveys. Always asking if I would refer them to a friend. Where’s the box for Hell NO!
In preparation for my daughter’s upcoming wedding, I have been accumulating a nest egg through payroll deduction with an institution with locations near my former home town. Full disclosure, I dealt with this bank in my years with my ex-husband so it comes with some bad juju attached. It’s an old savings account; I have no checks and no debit card. I do have on-line banking so I had hoped to get her banking information, set up a transfer and shazam send her some money for upcoming expenses. I set the transfer and it indicates that my transfer can’t be processed. I get an email that my attempted transaction has caused my account to be locked. I called the on-line banking department for assistance.
As to be expected, the call starts out with the stereotypical how is your day going aka how are you today? Well let me tell you how my day is going. I’m holed up in a hospital room where my husband has been for 34 days. I stayed over at the hospital last night on a sticky vinyl day bed. I would say I slept here last night but that really isn’t entirely accurate either; with people in and out all hours of the night. I didn’t get any coffee this morning because I was waiting for the doctors to round. Fearing my head was going to explode, I finally gave in and went to the cafeteria at 1 p.m. for my coffee. Hoping to get back before the doctors, I skipped the Subway line and grabbed a dry bagged sandwich to head back up to the room. And here I am talking to you.
Of course, I didn’t say any of that but it was rolling through my mind the whole time she was telling me that while I can’t transfer that much money person to person, they can mail my daughter a check. Well, that’s a fine idea, let’s trust the US Mail system with that check rather than doing it electronically. How else might we get this done? She recommends coming into the branch. Let’s pretend I moved to California and not Vicksburg, because I’m not driving there and even if I did that wouldn’t get the money into my daughter’s account without additional legwork. I really did say that part. Let’s think; I can’t authorize anyone else to come get the money because I’m the only one on my account. The only way to add someone to my account is to come and sign a new signature card in person. Then she indicates that they have a great App I can download on my phone to facilitate a wire transfer. For $20. Pause. Hold the phone. What? First you said the A word – “App” and secondly you are charging me to get my own money back. I guess nothing is free these days, but I get dizzy with anger every time someone tries to offer help with the words “down-load our free App on your phone”. Not like I don’t already have enough people tracking my every move now you want to be linked to my phone too. I can also do a virtual appointment on my laptop; this is if I could if the hospital internet to support it; which ended up that I couldn’t get it to work. Surprised? After a few deep breaths and a slug of cold coffee; I begrudgingly download their App and create yet another account with them with another log in and password that I will never use again.
I connect with their virtual banker and within about ten minutes she indicates that as long as I have given her the correct account numbers, the transfer will be completed in a few minutes. Wow, thanks an hour later. I have to admit, that App was slick but my mind always goes to the other half of the world that either doesn’t have access to technology or doesn’t have the patience for it. You basically can’t handle an illness or hospitalization now days without technology. Scary.
No wonder there is a rise in mental health issues. All this technology is stressful. No doubt that when it works it’s great but it requires a LOT of patience for a mature adult with a brain wired back in the ‘60’s or earlier. I for one look forward to the day when, not if, they offer the option of being chipped so I could just scan my wrist and go. Never have to deal with user id’s, passwords and security questions that only block me from accessing my information ever again. You won’t see me in line for the latest and greatest I-Phone but when chip ID is available; I’ll be first in line. Without it, I’ll be the person in the cartoon included. Sure as the world.
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.
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.
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 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!
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”.