After sharing my last update my feed was pretty quiet. I always wonder and worry; did I offend someone with my honest approach to our life changing situation? Still, I continue to feel that honesty is the best policy. Tell it like it is rather than sugar coat things for social media. Too many people like to make others feel like their life is story book perfect but that’s not me. That being said, I think it’s only right to share another story that happened the same day as my last report. While the day was pretty heavy with frustrations and apprehension, it ended perfectly. This story almost too good to be true in comparison but as real as the other. That’s what real life is; a rollercoaster of emotions. Learning to best navigate the ride of the day.
Managing a whole afternoon and evening of relaxation was not coming without some type of assistance. After finding the right tools for the job, I was feeling pretty good and eventually wandered back to the pole barn to check in on my man. By then he was cleaning up and decidedly hungry. We discussed our options and decided on a cruise for dinner. Owning three classic vehicles, dinner out means not only deciding where we want to go but what to drive and which one best matches the mood of the evening.
Stopping at the local Shell station to fuel up the 1992 Jeep chosen for our cruise for vittles, we got gas and washed the windshield, inside and out. We stopped at the local greasy spoon for burgers and beers on the patio over-looking a seemingly quiet river for this warm mid-summer night. With full bellies and feeling totally relaxed; we jumped back in the Jeep to marvel over that clean windshield. One that was now almost non-existent and in my relaxed state of mind was like an incredible open window to the past.
Back to a time when Scott was likely cruising these very same back roads with his girl. In a like universe miles from here, I was doing the same with my boyfriend in his classic Chevrolet. Watching and identifying the deer and waiting for night to fall; anticipating the pleasures that the darkness would bring. Reminiscing about great memories of our youth but more importantly, here today and feeling those same feelings of excitement of being together. Laughing at my imagination, enjoying each other’s company and feeling young again.
There is an over-whelming comfort in realizing that I enjoy that same things I did forty some years ago and knowing that he loves the same things. The sounds and smells of grazing livestock. Feeling the changes in temperature and humidity on a warm summer night when passing through the shaded or wet areas near lakes or swamps. The smell of growing corn, fresh cut hay, or straw from the recently harvested wheat fields. Watching as deer munch on juicy, green soybean leaves. Trying to determine whether the group is all does with young ones while looking for and hoping to see signs of the growing antlers on the male deer; all fuzzy in the velvet stage. Spotting a trophy buck.
Teenage dreams fulfilled. I have a man that adores me and I can see it in his eyes when we are nose to nose or side by side in our beat-up old Jeep. That silly smile that makes me feel like a love-struck teenager. Those not-so-subtle hints that let me know I’ll get lucky tonight. Nights like tonight remind me that life is good.
Luckily, by nightfall we had a comfortable home to go and relax in. No cops knocking on the fogged-up car window. Not only did that clean windshield provide a window to our youth, but also to 2022. Back to last summer when we were making final preparations to spend the rest of the summer in the hospital. Only about ten days away from his bone marrow transplant that we hoped would save him from the pain and suffering he had endured for the past months. Now discussing plans for our future, both post-BMT and post-work and business ownership. Realizing that we have so many options that many don’t have. Most we didn’t dare dream about a year ago.
Tonight’s date continued with an episode of Bosch Legacy and ice cream with chocolate syrup and maraschino cherries on top. From there, reading in our adjustable bed. Will it end there? Of course, it will; we’re a couple of old farts. Or… are we still just seventeen; like we feel. Enjoying most of the same things and still trying to figure out what to do with the rest of our lives.
Fueled with a little attitude adjustment this past weekend, I felt the writing bug feeding me a story or two; something I feared I might never feel again. So many thoughts and ideas flooded my mind; most of them evaporated by the time we finished our joy ride but I’ll do my best to pass along a few updates.
A year after leaving my full-time job as an ag loan officer, I’m still far from being retired. Owning a small store/restaurant like I have is more than a full-time job in itself. Scott’s feeling much better these days and we recently enjoyed ten days away, a visit to the annual canoe trip in Lake City and then a week at the family cabin in Canada. Scott’s son joined us without his wife as she is expecting in August. Smart man; decided to do his “Baby Moon” single. Scott’s daughter and husband came with their four-legged child and we came with only memories of our wonder dog Zeus. I haven’t written since losing him, but not a day goes by that we don’t think of our big lovable Boxer.
Other than a 2-4 mile hike up a mountain/hill on a mosquito infested trail, it was a pretty chill trip. The length of the trip varies by who you ask and when. I sucked it up and made it; figuring if Scott could then I could too. I’m pretty sure that was the same thing that kept Scott going too; only in reverse. Fishing was great and the weather was comfortable.
Unfortunately, we weren’t even unpacked before shit hit the proverbial fan at the store and I was picking up the pieces. Now its weekdays working on books, banking, payroll, scheduling and shopping and being on the schedule for the closing shift each weeknight. Feeling like I don’t want to make the difficult changes necessary when they are telling me that closing is still on track for the beginning of October. All we can do is hope they are right.
Scott seems to have adjusted to his forced retirement a little better than expected. It helps that his body has helped limit his energy so he’s able to work in the pole barn on his projects in small increments and nap whenever he wants and repeat. He tends to rise between 5 a.m. and 7 a.m. and likes to take a walk soon after he wakes. When possible, I would rather sleep in until 7 a.m. to 8 a.m. and play Wordle and watch the weather and local news. In my pajamas. The last thing I want to do is wake up and start walking. That would likely require dressing. Particularly when some days I spend three plus hours grocery shopping then another three to six hours on my feet working. Hard pass on the walk at 7 a.m.
One minute he’s a social butterfly; flitting around from one breakfast or lunch date to the next. Both glad to see people and glad to have his taste buds returning almost normal. Yet get to the end of the day and he’s too tired to go to the party I want to go to. Still a little leery of crowds with no immunity. Next month he can start getting his childhood shots. I’m still adjusting to his new personality; or trying at least.
People ask what I mean by that. First of all, it’s an adjustment to just have him feeling good and not working. Example, this past Saturday; Scott was in the middle of what I assumed was breakfast for us, frying bacon, when he got a call from his brother Steve. Next thing I know, he’s heading out the drive with Steve; off to breakfast. Left in the dust to finish making my own breakfast. Or we discuss our plans for the day and he tells me he’s right behind me; so, I head up to the store to start on a project. Two hours later, I text “WTH?”. Oops, someone called and wanted to go to breakfast. Or I come home and there’s no sign of him. Gone to lunch and didn’t leave a note or text. His phone is on the counter; at least that didn’t change. It’s hard not to worry even though he has been feeling great. He leaves for a walk without his phone and is gone for an hour. Oops, I was talking to every neighbor that would listen. It’s all good; it just takes some adjustment.
Even with the difficulty scheduling at the store, I do everything possible to avoid working Saturday nights. This past week, I ended up back at home just before 2 p.m. Scott was in the pole barn climbing ladders and doing things he probably shouldn’t be doing, clearly busy. You can’t tell a grown man with a second chance at life what to do; believe me, I’ve tried. The new Scott is a little more vocal than the original version. So, best to just move on and figure out what to do with the rest of my day. A rare afternoon and evening free of obligations. The first in what has probably been a month of fully committed days. Sure, I have lots of work I could do but it’s Saturday afternoon for gosh sakes. Time to do whatever I want to do; and it can’t be work. Sadly, I have no idea where to begin.
I started with dipping the stale rain water out of the hot tub since I could do it in my bathing suit. Afterall, it’s late July and over 85 degrees out. I look for and successfully rescue 5 butterfly larva and pull weeds in one of my many neglected flower beds. Still only 5 p.m. I visit Scott out in the barn, now working on making a dust collector for his miter saw. Guess I’ll go play a little June’s Journey on my tablet. If this is what retirement is like, this is going to make for some painfully long days. Three hours of self-imposed free time and I’m over it already. With all the buzz and excitement about retirement, I now see it being borderline traumatic. No wonder people pass away within days of their retirement; they’re lost or scared to death; literally.
After a life-time of what was almost constant multi-tasking; I’m already contemplating taking a job for a few years; just because I really can’t grasp the idea of living potentially 30 years while not working. I can really see how so many retirees seem to party all the time; one, because they can of course, and two; to numb themselves enough to not feel guilty for not doing something critical every day. Not pushing papers or making parts to make the world go round, no feeding the people or churning the almighty dollar.
Not to say that enjoying time with friends and family isn’t important, but most of us find ourselves squeezing it in between all our “must dos”. I’m not sure I’m ready to have nothing on the calendar but social events and doctors’ appointments. With so many friends and family members living an hour or more away, I almost dread the time that will have to be spent commuting to do all the things we’ve worked our whole lives to have time to enjoy. Never-ending back yard barbeques, dinners out, vacations and fun with the grandkids.
We will see what retirement brings. Hopefully the sale of the store keeps moving along and we are free by the end of the year. Until then, it’s one foot in and one foot out. For now, I’ll have to settle for counting down the number of days that I will still be walking around smelling like fried chicken and potato wedges.
It’s hard to believe that it’s been over two months since I’ve written anything. I spent many days getting things ready for the tax preparer. Still my taxes aren’t done. Two weeks trying to keep the store open with three of my eight employees out with COVID and another week with Scott in the hospital unexpectedly. I had high hopes of submitting something in the local writing contest in February but that didn’t happen.
Even more astounding is that it’s been over a year since this painful journey began. The story begins and will end on vacation.
Looking back, it looks as though I was at my wit’s end in mid-January when I last reported. We FINALLY received payments from AFLAC after filing multiple complaints. Can you say too little too late? I still have more claims to file but can’t seem to get motivated to start the process all over again. Scott’s return to the hospital lasted about a week and he has been feeling incredibly better since then. So much so, we headed out on a much-needed vacation on Friday, February 24th with his doctor’s permission.
Several friends had extended offers for us to stay with them if we could get away; so, we decided to take them all up on their offers. We also wanted to spend some time in Nashville, Tennessee again. We considered going to the Grand Ole Opry but ultimately decided to look for something unique. I found a concert venue in Pelham, Tennessee; more specifically The Caverns. Larry Fleet was going to be there on Saturday the 25th so I purchased tickets for that Saturday night making our trip official. We were going to a concert in a cave. No turning back now.
Scott packed his vacation shirt and I did the 101 things necessary to be gone for two weeks, everything from making all the reservations to cleaning out the refrigerator. We dropped Zeus off at Grandma’s and left the house almost on time that Friday morning. Equally amazing was the fact that we arrived at our hotel in Nashville approximately the time we had mapped out. Anyone that has traveled with us knows that a trip that maps out at say 7 hours will end up taking us about 10 hours. We checked into our hotel and inquired about the free shuttle to downtown Nashville. After learning that there was only one shuttle and he was already downtown, we decided to walk. After all, the hotel advertised that they were within walking distance to all the activities on Broadway. That is if you are a high school track star. It turned out to be about a mile and half uphill from all the activities. Walking downhill was sure better than the reverse but walking that far on a decline in cowboy boots comes with its own challenges. After being in the car all day, the walk wasn’t all that bad. That was until we reached our first destination and I was carded. I immediately knew what I had done. In packing my phone case to avoid carrying my purse, I had forgotten to include my driver’s license. I knew better. Imagine my frustration; I just drove seven hours, then walked a mile and half, fully anticipating enjoying a high-priced drink, only to be carded. Needless to say, Scott dialed up the shuttle man and asked him to pick us up and take us back to the hotel. We were able to catch a ride back downtown relatively quickly so it wasn’t a total bust. We had to laugh, of all the iconic places to reference in downtown Nashville, our driver was picking us up in front of the Apple Store. Nice young man but he obviously didn’t come to Nashville for the country music.
Downtown Nashville, TN
We returned to our favorite bar from our last visit which has ironically been renamed “Losers”. No wonder we felt so at home there. We got seats right by the band and stayed for dinner. Most of the really popular places were packed so we avoided them. We did some more sightseeing in the morning and headed out in the late afternoon for our next stop. I had booked a room in a place called the Smokehouse Lodge in Monteagle, TN. It’s been in the same family for over 60 years. They had a fire a couple years ago that took down their entire restaurant. So they remodeled their shop into a make-shift eating establishment complete with live music. We ate off paper plates and drank bottled beer and water. I ordered pulled pork; my sides were Brussel sprouts and cucumber salad. You know, trying to be healthy. Imagine our surprise when they brought out three FULL plates of food – just for me. I think it was about 3 pounds of Brussel sprouts, probably 3 cucumbers sliced with a tomato or two and a hefty pile of sliced onions; with a bottle of Italian dressing. It was really a shame since we had no way of keeping our left-overs. Scott’s food all came on one plate but we really don’t know why they were different. The best part was that it was probably the cheapest meal of our entire vacation; around $30 including tip.
The concert was really good. Unfortunately, it was a decent walk from the parking lot to the cave and the drive to it was probably the most fog I had ever driven in so that made me nervous about getting back to the hotel. The acoustics were great and there wasn’t a bad seat in the place; because there were NO seats. After a rather long day of walking around Nashville, we could only do 3 hours on our feet before we had to make the decision to leave before it was over. Thankfully the fog was a little better on the return trip and we had a restful night.
Our next stop was Valdosta, GA at a Drury Inn by recommendation. We would certainly recommend Drury Inn’s as well. Not only did we each get three free drink tickets at check-in; they also provided a full supper meal. It appeared that they cater to an older crowd. They knew what they were doing with that plan; I’m pretty sure we weren’t the only guests that were in bed by 8 p.m. with full bellies and a nice buzz. Makes for a really quiet establishment. In hindsight, it was a great way to celebrate Day 200 post-transplant.
Monday had us heading for Palm Harbor, Florida to have lunch with Scott’s former brother-in-law and his wife and daughter. They provided a great lunch and we really enjoyed our short visit to their beautiful place. Thanks to supper traffic, our one-hour drive turned into two; making us late for supper at our next stop. The drive from Palm Harbor to Lake Placid was diversified. It started out with busy city traffic and ended with sights and sounds of farm country. Orange trees, sugar cane and quite a few cattle. This stop was with my girlfriend and former co-worker at Farm Credit and her husband. It was easy to see why this part of the state was so attractive to this retired farm couple. The next day, he and Scott went for skid loader parts and a tour of farm country while she and I toured the town, admiring all the murals, did some shopping at Beall’s and stopped at the former Farm Credit office for a photo before hitting the lake for some sun.
Wednesday we went on an airboat ride. Rather than going for a large boat with many people on Lake Okeechobee, we chose to go to a smaller operation where he took just the four of us and was a really good tour guide. We saw several gators, lots of birds and even saw a dead gator being destroyed by other gators. It was an enjoyable adventure. After a quick lunch we were back on the road. This time headed to Fort Lauderdale. Just to say we went there. We spent a little time in the deserted pool and had a great meal at Smoky Bones. The next morning, we spent a little time on Hollywood Beach before heading to the Keys to spend a few days with another good friend. Hard to believe our vacation was half over already.
This was another relaxing stay at another beautiful home. Our friends had just purchased it this year and we were some of their first guests. We enjoyed the pool, the thatched cabana and all the fish in the canal out the back door. She and I went shopping at Beall’s – my new favorite store and got groceries for what ended up being several terrific surf and turf meals there. I was surprised to find that both clothing and groceries weren’t any more there than they had been at home.
We also got to go on a fishing charter on their son’s boat with one of his very capable and patient captains. He kept pretty busy keeping bait on all our lines. Scott caught a couple small sharks, I caught a puffer fish and we all caught some really pretty silver fish that we threw back as well. They were more of a bait fish. We ended up with a nice batch of Mangrove snapper that fed us most of the week as well as gave us a meal to take to our next stop to share there. The water was amazingly calm and before we were done for the day we saw a whole bunch of dolphins; some very curious and coming right up to our boat. I have a feeling we smelled like dead fish so they were interested.
We took a trip to Key West but decided to see that mostly by car rather than walk since it was fairly crowded. We had another great meal in town and enjoyed the people-watching entertainment factor of the whole area. Another great stop on our tour. I think we were up for sunset every morning; enjoying that on our friends’ deck. Then later crossing the street to her son’s house to enjoy sunset on his upper deck. Certainly, the life if you can get it. We left there feeling very relaxed and rested.
Scott’s 32 year old vacation shirt saw the light of day again this year; fitting better than it has in years.
Next was a quick stop at Scott’s niece’s place in Cape Coral where she provided cookies and lemonade and another photo op. Our final destination; near Port Charlotte and Englewood. There we stayed with one couple and enjoyed wonderful hospitality as well. Each day we got together with other couples in the same area where we enjoyed the beautiful sunshine, warm pools, friendly card games and great company. We went for a pontoon ride for 14 in the Gulf where we saw more dolphins and I was able to do a little shell hunting. Four more days of total enjoyment with beloved friends.
Day fifteen found us back on the road again; trying to avoid Atlanta, Georgia at rush hour. After rising with the sun every day on vacation, we were able to leave Florida at 6:30 a.m. By now Scott was feeling so good that he even did some of the driving home. After about 10 hours on the road, we had a disagreement with our navigation lady and fought our way through Atlanta, despite her. We made it to Columbus, Tennessee before calling it a day. Twice on our trip we experienced something new. Our navigation system was “speaking” and suddenly paused and said “I’m sorry, let’s try that again”. Thanks for the apology but I’ve already missed my exit! Over all she was a great help and I can’t imagine driving what ended up being over 3000 miles without her.
We certainly feel blessed to have been able to be gone for two full weeks. My employees did a great job while I was gone and I really did very limited work during our time away. We got up early to enjoy full days and while he did enjoy a drink or two occasionally, his doctor report on the Monday of our return showed his liver and kidney numbers very good; no harm done. After all that we went through in the past year, I certainly felt that we deserved a few days of sunshine and relaxation but even more so we felt blessed to be able to go. We had survived what we hope to be the most horrific year of our lives. Literally, financially, mentally and physically. I say “we” because while it happened to him, thankfully he doesn’t remember all of it. I may not have had to suffer the physical pain of his ailment; but my memories remain very vivid. This post-apocalyptic adventure allowed us to see what our friends are doing in Florida and see them enjoy each other and their respective retirement years. We saw a glimpse of what we would like our future to be. Chemo brain still raises it’s ugly head occasionally but we feel like the worm has turned.
We went to his appointment on Monday with a whole new view. I drove without concern or worry; no longer fearing the two-hour journey. He was feeling great. Even with our exit closed, we got there on time. This visit, we were looking healthy and rested and even a little bit tan despite the SPF 100 sun screen. We knew how to navigate the parking and get to his appointments without worry. No longer one of the many people wearing faces of terror and panic about where their lives were heading. Now we were able to help other people get where they needed to be.
Don’t hate us because we look healthy, but please look at us and know that recovery is possible. We look forward to enjoying all that life has to offer. Seeing things through different lenses now that we realize that a healthy tomorrow isn’t always a guarantee and feeling like together; we can do anything.
Hoping and praying that our future contains many more days of “Toes in the Sand”
I recently shared that I feared I was nearing a breaking point. This week was full of challenges including a Friday the 13th. Months of battling with AFLAC, problems at the store and Scott being readmitted to the hospital, seemingly failing rather than improving. Just seeing a friend’s post on Facebook about having dinner with her family at a restaurant was enough to bring me to tears. What I wouldn’t give to have a dinner out with the family right now. You don’t appreciate the simple things until you go a year without them. This week left me ready to walk-away from money due us from AFLAC, sell the store and look for a job. Being the boss and owner of a business is over-rated; most times it feels like it’s all problems and very little to no pay. Going back to work would eliminate the need to continue fighting for the AFLAC benefits, not to mention eliminate that $1300/month bill for our health insurance. It seemed like it was time to give that some serious thought.
After being gone a few days, I had to get the mail and Lucky the chicken met me at the roadside. It’s always good to feel missed, even if it is by a chicken. Feel good sign number one. It was getting late when I realized that I never looked at the mail. Of course, as if the week hadn’t been bad enough, there was an envelope from AFLAC. Might as well see what they have to say; get it over with. As expected, it was another denial letter. This one indicated that on a particular claim, they found no evidence that a stem cell transplant had been performed so therefore the claim was being denied. I’m not sure why they paid for him to be in the hospital for 39 days yet thought that nothing had transpired during that time? Really? Was my counting off? Was this bad news number one already? Afterall, being welcomed home by a hungry chicken was probably a stretch to count as something positive happening in my life.
I couldn’t help it; I decided to really punish myself and log into our AFLAC account. If the 110-page hospital bill with the page with the charge for over $54k highlighted along with additional supporting materials wasn’t clear enough; what was? My blood pressure was climbing. So, I logged on and what to my wondering eyes should appear but an explanation of benefits. WHAT?? Despite the letter of denial, a significant sum of money was deposited into our account – on Friday the 13th no less. A huge relief, but not enough for me to take back all the nasty things I said about them. It should have happened months ago and without all the stress that probably took years off my life. Back to thinking positive; event number two.
After weeks of having everyone tell me that I needed to take care of myself, I decided to go to the doctor last Monday and have my finger looked at. I had injured it the week of Thanksgiving. Long story short, don’t use your fingers as an ice scraper unless you want to tear a tendon and wear a finger splint for two months.
Anyway, while there, I had gotten a fourth COVID vaccine; for Scott’s sake. Since then, I had been feeling crappy both physically and mentally. Exhausted, like I had a cold brewing. I decided that maybe it was time to take one of those free COVID tests I had in the closet just to make sure I wasn’t one of the super spreaders. Living at the hospital no less. They are really good at testing patients but not caregivers. Thankfully, it was negative. I think I started feeling better immediately. Good news; number three. Probably the most I could hope for.
Saturday morning; still fuzzy from last night’s Nyquil, I begrudgingly drug myself out of bed to go make food for this week’s lunch specials. Strapped with a long list of must dos before I headed back to Ann Arbor, I hopped in the Dawg mobile and headed to town. After hearing all the issues that they were dealing with while I was in Ann Arbor for a mere four days, I was only more convinced that it was time to throw my hands up in the air and succumb to defeat. Easily bad things one through three if not one to six – a double whammy. What seemed like a crazy dream six years ago was feeling like a back-breaking mountain of problems. Starting with a dramatic failed attempt in a business partnership ending in a buyout, moving into years of COVID that led to an inability to find workers along with a never-ending list of equipment break downs. Without my “free” maintenance man by my side, even the smallest problems seem insurmountable. I began to think about exit options and planned to talk to Scott about my admission of defeat as soon as I got back to the hospital.
The van I purchased for catering in 2022
Enter our financial advisor. A pint-size cheery ball of fire. She was there to grab some lunch and report that the soup from Wednesday was amazing. Now that she had finally tried our food, she was already making plans to eat with us once a week. Just the encouragement I needed. That got me thinking about ideas to make sure local business owners knew about what we had to offer.
Next thing I know, I got a random text from another business owner. He shared plans he had in the works that would allow us to partner on some things on a larger level; exciting for both him and I. There was no rhyme or reason as to why he chose to share what he did, when he did, but boy did I need to hear it. Feeling hopeful, I finished my food prep, did my banking and payroll for Monday, grabbed the mail and was out the door. Headed back home to print, pack and proceed.
In the pile of mail was a letter from the Liquor Control Commission. Now that couldn’t be good; could it? I had no choice, pull up my big girl pants and rip it open. Much to my pleasant surprise, it was a letter of congratulations. As we had suspected, we had been the target of a sting in November. The letter indicated that my staff had acted appropriately and had refused sale of alcohol to a minor. The third sign that now was not the time to give up hope.
Today the doctor indicated that after all the blood testing; they are thinking that the blood sample was contaminated and that he might not have ever had a blood infection. He said that oddly enough, it was a good thing that it had happened because it brought him here and they were able to catch the GVH of the gut really early so that it can be easily treated with steroids. That and the C-Diff was a very mild case as well. Hum.
Scott enjoying the pool in Costa Rica in 2021
I realize that you may or may not believe in a higher power. If you’re not a number person, you’ve probably not given much thought to the rule of threes. Just when I could easily stop believing; when I didn’t think I can take any more, then something happened to change my perspective. I do believe that life/God won’t hand you more than you can handle; but boy, it gets close sometimes. It’s easy to find fault in my rule of threes but it’s looking at things in small bites that makes it easier for me to keep plowing forward. With all the challenges that life today presents, it’s really important to find something that works for you and stick with it. Whether it’s prayer, yoga or counting your fortunes and mis-fortunes; use it to get you through the rough patches. For me, counting helps me take notice of the small things and helps remind me that bad #@#%^ won’t last forever. Take a que from one of the best bands ever – and Don’t Stop Believing.
Here we are; mid-way through Day 2 back at 7-West in University of Michigan’s Bone Marrow Transplant Unit. I’m back to delving into research on the internet and Scott is sleeping. I’m not sure that I’m glad that he’s sleeping again but at least he’s not concentrating on how much he is itching. It seems that he might be allergic or at least sensitive to the Vancomycin that they are giving him for a blood infection.
I think I have mentioned that for the past month, he has been on the edge of going downhill or at a minimum no longer improving. He’s been sleeping 80% of the time and has lost his desire to go outside and work on his projects in the barn. He’s still not eating like he should and he’s lost 10 pounds of the weight we worked so hard to put back on. Not only is the sky outside grey, his mood and therefore mine is a dull shade of grey or just plain blah.
Not sure how I got him to pose for this picture ten years ago – he probably wouldn’t do that for me now that we are married….
When we went to his appointment on Monday, we impressed upon the Nurse Practitioner his lack of energy and desire to do anything. It was time to push for more tests to get to the bottom of what was keeping him from progressing. Was our darkness caused by the mental disappointment of being past Day 100 and not being “better” or was something really wrong? We both needed to know. I know for me, being in the depths of despair for about a year I was reaching my limits.
We were both worried yet relieved to hear that the tests showed an infection and that they wanted to see him back at 7 West. It confirmed that something was really wrong. That meant a quick trip to the store to check on things and make Wednesday’s lunch special, followed by making arrangements for the dog and throwing a few things in the over-night bag for a one-way trip to Ann Arbor. Being in any ER is a real stressor, but maybe more so in a large city. Everyone there is stressed out and seems to think their problem trumps everyone else’s. I just wanted to get out of there before we ended up with COVID with people coughing and sneezing all over the place. We managed a room in a little over an hour and then were cared for in a small cubicle. Transport upstairs to his room took a little over 6 hours which we hear is really good. Good thing I packed snacks because they weren’t serving supper by the time we reached his room at just before 10 p.m.
There is a certain amount of comfort seeing the same staff again and knowing that the 7th floor comes with privileges that aren’t allowed in most areas of the hospital. As much as I am able to observe and report while keeping my vigil, I can’t imagine being forced to leave at the end of the night. Not only can I see changes and things that cause me concern, I am here to catch him when he is unable to communicate all that is going on with him. Last night he was very spacy and avoided a near fall. I know that if I had not been in the room to get him back to bed he would have certainly fallen on his way back to bed and who knows how long it would have been until they found him. Not at all a dig on the staff or hospital but just the way it is. They can’t be in all places at all times.
It was somewhat reassuring to hear them all telling him what a good job we had done if this was his first trip back since his transplant. Knowing that a return visit or two is almost expected helps make me feel better. Hearing that he had an infection in his lumen on his port left me feeling even more defeated than I had been. Knowing that I had likely done something less than perfect that was causing him to be sick was very difficult. They have been good at trying to reassure me that these things happen under the most perfect of situations.
We’re here to get to the bottom of things. I’m glad we got back here before the infection(s) got to a place that they were at feverish levels and caused irreparable damage. Still scared to know that there are several things working against him; one of them being something that could cause long-term kidney damage if they don’t get it turned around. We have a great team of doctors and nurses looking into things. I love how the doctor on rounds listened to Scott, then turned to me and said, and how is he really doing? That’s perceptive. I don’t know if Scott’s that foggy or will always be the eternal optimist that doesn’t want to complain.
Don’t you wish more people were like that? As I sit in the hospital dealing with all the uncertainties, I make the mistake of looking at Facebook. As much as it can be fun, entertaining, and full of great photographic moments, you have to shake your head at what some people share. I’m still waiting for some of those emoji’s they talked about adding; something to the effect of WTH and you’ve got to be kidding me. So sorry to hear of your hang nail or bad hair day and the likes. Maybe if people only knew how difficult life could be they wouldn’t be so quick to put things out there that most of us see as very minor disruptions or inconveniences in comparison. That being said, I’m just as guilty. I’ve looked at blogs written by some of my readers from other countries and I feel that even what we are going through pales in comparison to the fears that so many people face. Wondering whether they will live through the real battles going on around them and worries about where their next meal will come from. How they will manage to raise their children in horrible conditions. We all have our own version of hell to wade through. Being here and seeing all the children and parents makes me realize that someone always has it worse than I do. Having the whole “flock” of people supporting us is sure nice; I know that not everyone has that and we are very thankful for all your support. You know I’ll keep you posted as we learn what they find.
I’m making it official. I’m literally losing my mind. And I HATE the word literally but it applies in this situation. I wake in the morning hating AFLAC. I can’t concentrate during the day because my mind is constantly going back to the frustrations with AFLAC. I can’t sleep at night because I’m planning what my plan of attack will be tomorrow in my quest to get what is due us from AFLAC.
I’ve mentioned many times that the purpose of my blog was multi-faceted. It started as a way to keep Scott’s friends and family up to speed with his battle with cancer. The Facebook group morphed into an international blog as I found writing was a wonderful method of stress management for me and people were inspired and moved by my content. I really felt I was being called to write so that I could make a difference in the lives of people suffering with unexpected confrontations with cancer. I wanted to make a difference.
Yesterday was Christmas with our children. The day I’ve been looking forward to for almost a month. With a mixed family, not every one is as blessed as we are. Our four children are all married now and all eight of them range in age (give or take a year) from 29 to 36 and we have one amazing living grandchild that is just over a year old. They are all unique and special and have a common bond; the desire to see their parents happy. Better yet they all seem to have fun getting together. They tell stories and bond over food and as their parents, we couldn’t be happier to see this happen.
I typically work on Saturday mornings at the store; but yesterday I took it off so that I could prepare my food and get the final touches on the house. I can’t take credit for cleaning the house as I have a cleaning lady who came Friday and did the dirty work. I know I sound very spoiled but as someone who worked two jobs their entire life, I feel like having a cleaning lady is my reward. I couldn’t live without her now. Not to mention, managing a business and working there is still working.
I woke with hopes of a great day but the next thing I knew, I was thinking about AFLAC. I called my mom and invited them down since the weather was good and the roads were cleared. She asked if I saw what someone posted on my cousin’s Facebook page in response to my comment about AFLAC. That was all it took for my entire day to spiral into a hate fest against AFLAC. I was late getting my food made, ended up staying in my stretch pants all day – including for the family photo and let it cloud my entire day. It was a great day of laughter, great food and nice gifts but all I could think about was AFLAC and how they are screwing us over. My step-daughter gave me the greatest gift of all; a necklace calling me her bonus mom. For a person that doesn’t cry; I cried, then and now.
I know that I have so much to be thankful for. People in other countries are starving and living each day in fear for their life; for that matter so many people in America live each day in fear of where their next meal is coming from. Which all brings me back to AFLAC; that’s how warped my mind has become. I sit here in my middle-class version of a Taj Mahal with the dog at my feet, my husband by my side and my bills are paid. It doesn’t matter that we are fine. I know I should be thankful that Scott is still here. We have the financial backing of my 401k and what used to be a nice savings account; so why is it all I can think about is the $10k or so that I’m owed by AFLAC. That I have no idea how to get that money. I’ve tried submitting all the documentation and the excuses just keep coming. I’ve read plenty comments on-line from others, including insurance agents, that have faced the same. Sure there are people that chime in and say that they had a policy and were paid generously and timely. But the fact is there are many that have not. Hiring a lawyer will only mean doing the same work, forwarding it to them so they can forward it to AFLAC with a stern warning. End up paying the lawyer everything we get then some?
People that don’t know me will comment that you need to provide them with the right paperwork, that they need proper documentation. Feel sorry for me because I must be stupid and don’t know how to manage technology. Well let me provide an example. I submitted a claim for the $7k benefit for undergoing a stem cell transplant. I provide a cover page telling what I was expecting from this particular claim and noted what page of the hospital bill included the actual charge for the transplant. I uploaded the 100-plus page hospital bill and the doctors notes from the day of the procedure and his discharge notes referencing the transplant. Pretty cut and dry in my mind. Nope – I get notice that my claim is denied because I have not included “proof of lodging”. What in God’s green earth does that have to do with getting paid for the transplant? You can’t be serious? They paid the claim for his 39 days in the hospital so you already acknowledged where he was lodged. Where I stayed is not part of this claim.
I’m feeling the pull for a greater purpose. I seriously want to lead a class-action suit against AFLAC for mental pain and anguish. Not so much for me, but for the people out there that I know probably ended up losing their house or car because they were sick or injured and didn’t get the money they signed up for with AFLAC and lost everything. For all the people that left money on the table because they just couldn’t do it anymore. Because they thought a multi-billion dollar company was just too big to tackle. Because after months of dealing with the system, they are just too broken down and defeated to keep fighting. I keep trying to tell myself that I am not that broken and defeated person and that I will win this thing but I don’t know any more. While my only concern should be that my husband gets better and decides to participate in life again, all I can think about is AFLAC. Nothing could be more wrong but I can’t control it. It consumes me and makes me feel like a terrible person.
Happy New Year! Well – at least we can agree to the New Year part. Like it or not, it’s here. The happy remains to be seen. I’m really hoping that 2023 means that the worm has turned. I’ve been asking myself; do I feel like the world going to hell in a hand basket just because I’m getting old or are things really going downhill? Politics, social media, COVID, the economy, the whole work from home situation and the “younger generation”. Michigan was recently in a state of emergency, schools closing early, holiday events all postponed all due to a threat of a impending winter storm. Like it has never snowed in Michigan before. As I expected, predictions of over 18 inches of snow turned into only about six inches but winds did produce some decent drifts leading to a few hours of less-than-ideal driving conditions. It wasn’t long that crews had our roads cleared and life was basically uninterrupted. Not like Scott needs any more reasons to fear going in public, threats of a triple-demic also filled the news; you know – COVID, the flu and RSV.
Through the eyes of a child…..
I tended to believe that things were really worse than ever until I heard the following. In his continued search for interesting information on YouTube, Scott recently found this reading by Paul Harvey that was written in 1965 entitled “If I Were the Devil” – if you are curious, you can view it at: https://www.youtube.com/watch?v=QGrWvrGDOXg. This isn’t meant as a religious ploy of any type but more as confirmation that things really aren’t much different; the only change is in my perspective based on 58 years of experience. It’s likely that since the beginning of time, the adult generation has always felt like the world was becoming a place of evil and craziness while the younger generation, thought their elders were just old-fashioned and out of touch. Now the tables have turned and I am part of the geezer generation.
My negative perspective is very likely magnified as a result of the last year. The year my fairy tale life came to a screeching halt by a visit from the dreaded “C” word. In hind sight, we were lulled into acceptance with the promise that if Scott could weather the stem cell transplant and the 100 days that followed; we could return to a life of normalcy. A fantasy I clung to until Day 100 came and went and he continued to struggle to recover. Now we’re told that while all the literature speaks of the critical nature of the first 100 days post-transplant, the actual recovery time is more often an entire year. Something I’m struggling to accept.
The annual photo at my parents – this year on December 26thdue to the weather concerns
Living with a cancer survivor is exhausting on many levels. It’s spending all your time with someone who is mentally, physically and emotionally unavailable while you find yourself in over-drive and suffering from mental over-load. New medical terminology and managing pills and appointments. Laundry and dirty dishes continue to accumulate, the demands of owning a business remain and life goes on around you. Household finances don’t take a break either while you wait for AFLAC to send you that advertised yet seemingly unattainable claim checks to get you through the worst times of your life. I don’t think I’ve ever been so frustrated in my life. The claims are valid, and I continue to provide proof after proof and yet we still are waiting for thousands of dollars from them. It is certainly the cause of a lot of stress and frustration right now. It’s so tempting to just throw my hands up in the air and give up but I don’t know that any one should ever just walk away from that kind of money. I’m about ready to call Sam Bernstein or better yet Geoffrey Fieger. I think they need a Class Action Suit filed against them to make them understand that the undue stress and anxiety they cause their customers is nothing short of cruel and unethical. Not like life isn’t already hard enough that you need to make it impossible for people to get what benefits they have bought and paid for. I probably won’t go through with my threats of legal action but it at least warrants some investigation.
After “passing” on many holiday parties, we finally managed a Christmas get together with my side of the family on December 26th. Christmas with our kids is scheduled for January 7th and then a get together with Scott’s siblings and children on January 13th. Hopefully everyone is healthy and we will be able to take part in both those events. We ended the year with a visit from friends in the afternoon followed by a relaxing evening with Scott’s daughter and her husband. Scott made it until 11 p.m. so that was pretty impressive.
An early New Year’s Eve toast with Scott’s daughter & husband
Trips to University of Michigan are dwindling to every other week and now that 2023 is here we can start thinking about a trip to Florida in March. After all, we are both retired now! I’m looking forward to a day when I can actually feel like I am retired. So many other duties have taken the place of my job that I’m already one of those people that don’t have a clue as to how I did a job and everything else all at the same time.
I have never bothered with New Year’s Resolutions and this year is no different. Magazine displays have promised us quick-fix diets and fitness plans as long as I can remember. Still, we are a nation that continues to grow in number and girth. Most would never believe that I was a twig as an adolescent. With more on my plate than I can digest, pretending for a few days in January that this year will be the year that I slim down, isn’t even on the radar. My goals will continue to be less about me and more about providing my staff the tools and equipment to operate in my absence. That in turn will free me up to spend time with family and friends; which is my goal for my retirement and 2023.
Our social calendar will likely remain a little sparse in 2023. More than anything I’m hoping to see that little by little the Scott I used to know and love returns to me. I’m looking forward to uncovering ways to take advantage of my status of “retired”. Organizing meet ups at the beach with the girls – (we are still girls at 60ish aren’t we?) or afternoons with my grand-daughter. I took advantage of my status yesterday afternoon – a friend called and we did an impromptu meet-up at the casino. I donated a little more to the Potawatomi nation than I planned but it was a good time. A good start for what I hope is a year of more time with friends and family and less time at hospitals and doctor appointments.
I don’t know if the old adage applies to writing or not – you know the one – if you can’t say anything nice, don’t say anything at all?
It’s been a little over a week since I drained my heart and wrote my Thanksgiving article. At the time, genuine in my appreciation for all the good that has come out of this experience. Unfortunately, those feelings have left me and I am nothing but an empty shell of bitterness and frustration. As drained as I feel, I should have lost 50 pounds but I see this morning that I have gained 3 pounds in as many days.
We finished watching 1883 last night and I think I drew more from that series than Yellowstone. Now as I write, I think of the gravelly voice of young Elsa, the badass daughter of James Dutton. I can only fantasize that the words I write would be as profound as the words she spoke in that show.
The show documents the trials and tribulations of a girl coming of age while her family travels cross-country in search of a brighter future in a new land. She experiences the worst of the worst, and the best of the best. I don’t want to ruin it for those that haven’t watched but I think Sam Elliott’s character summed it up best when he told her father, played by Tm McGraw, that she had lived and done more in her life than most do in a lifetime. It was a most brilliant 3-4 sentences that I wish I could recall in exact. She was a force to be reckoned with. There were no secrets with Elsa. She was an incredible character who was a ferocious fighter and a passionate lover; all by the time she reached the age of eighteen. I want to be her in my next life.
There are so many things I wish to tell you but cannot. My husband is a very private man and accepting my writing to the general public has been a stretch. Who knows, maybe some of these darker moments of our experience will become chapters in the book I hope to write in the future where only readers that commit to the whole story will find a few hidden gems.
He continues to find sleeping difficult. It’s nothing to hear him up at 3 a.m. moving about. Spilling his water on the nightstand and struggling to get it mopped up. This morning he was up at 5 a.m. turning on the lights and rustling about the kitchen; making coffee that normally is cold by the time I get up. I’m not a morning person. I try hard to be; particularly in the fall when the temperatures are just right but at this time of year when mornings mean 19 degrees and pitch dark until 7:40 a.m. I see no purpose in getting up at 5 a.m. Today I was just plain wide awake. As expected, we sat watching television until he fell asleep around 7 a.m. leaving me to spend more time alone watching whatever show he had on at the time.
Friday night was our friends annual Christmas party. It’s always a good time with a great bunch of friends that I was looking forward to seeing. Still as Friday approached, I sensed that he was nervous about being with so many people. Commenting that it would be difficult to go to a party where everyone was drinking and he was not. The closer we got to Friday, I lost all energy or interest to make the hour drive to the party. Knowing he would not enjoy himself and that I would end up being the one to drive home when he was ready to leave early. Answering so many questions and trying to appear happy and upbeat.
I’m tired. I’m tired of not sleeping all night. I’m tired of being the one that is responsible for everything. I’m tired of all the same stupid shows on television and constantly picking up after both of us. He tried helping with laundry and that resulted in him washing his phone which meant I had to add filing an insurance claim for the phone and getting the new one set up with the representative. I’m tired of being strong and upbeat and positive.
So many well-meaning people have been reminding me to take care of myself. I’m afraid after a life-time of being a people pleaser, I really don’t even know what that looks like. Given a few hours of time, I don’t know what to do with myself. I look at the ever-present “Things to Take Care of” list and see that there’s really nothing on there that can’t wait another day. So, then what; the best I can do is pop in a piece of toast and sit down and write. Hoping that as it has worked in the past, I can write all my toxic thoughts and move forward. Leaving it all out there for you to read and digest with me. Printed proof that I’m not this wonderful, amazing person that you all comment about. That I’m actually ungrateful, self-centered and mean.
I look back and I see that it was June 10th that I wrote of feeling alone; that while I should be glad that he was alive I still questioned that he was really still with me. Back then the pain was consuming him and he wasn’t present. Nearly six months later, with his transplant behind him he is no longer in pain but he’s still not “back”. I think my frustration and sadness now revolves around my fears that he will never really be back. As if the chemotherapy has stripped him of his dignity, his passion and compassion; his sense of time and common courtesy. He is numb and has no spirit. That twinkle in his eye that told me he loved me without words is gone. The fact that he has no interest in holding my hand or putting his hands on my shoulders to comfort me even when I express the need for it.
I know that I need to be patient and more understanding of all that he’s gone through but it’s hard. I’m not a patient woman. I can’t imagine what it’s like for people caring for people for years on end. That requires more than I have in me. It’s been an entire year since he felt good and was the man I fell in love with and married. It’s been an experience I know he doesn’t deserve so I’m left feeling like it must be my punishment for the life I’ve led. The hurt I’ve inadvertently caused others. When will it end?
I think maybe we put too much emphasis on our 100-day goal. The illusion that there would be light at the end of the tunnel once we reached that mile-stone. Yet here at day 108, it feels as if nothing has changed. We are still waiting for things to feel more like they used to. Instead, I think I have to realize that nothing ever will be the same again and I’m not ready to accept that.
Life has it’s way of sending you signs when you need them; reminders of a bigger picture and a power greater than you and I. A cardinal just landed outside the window, as if to stop and tell me something. Maybe a reminder that it could be so much worse. Telling me to that I need to put on my “Elsa” pants and keep going. For better, for worse; in sickness and in health.
This was taken by Alli – my sighting wasn’t this brilliant in color but the message was clear
Post script: As I sat rereading and making adjustments to this; my phone rang and it was a friend that I hadn’t heard from in months. She said she just had a feeling that I needed a call. Explain that…..
The house feels a little empty without all my fall decorations up. I wasn’t going to do any decorating since we weren’t supposed to be home. Things will be scarcely decorated for Thanksgiving. You won’t see Christmas at my house until November 25th. Which also happens to be Day 100; the day after Thanksgiving. It will certainly be a fitting holiday for us this year. We can’t be thankful for all that we’ve had to endure this year but coming out the other side without constant and excruciating pain is a gift that our insurance company has paid over a million dollars for.
I’ll admit; I’ve had more than a couple days where finding anything to be thankful for has been more than a challenge. While I’m feeling genuinely grateful, I thought I would share our Top 10 Things we CAN be thankful for this year.
Scott carves the turkey for us again this year
Obviously, FAMILY. For sister-in-laws with medical knowledge back when we were first learning how to deal with pain management. For everyone’s unwavering concern that ultimately led to us going to Mayo Clinic for a diagnosis that would have taken the folks in Kalamazoo forever, if ever, to figure out. Home-made meals, baked goods and Culver’s when he would eat nothing else but milk shakes. Money, cards, letters; sitting with Scott when I had to work. Helping with the IV’s & medications as well as staying with him for a few days and nights so I could go to my daughter’s wedding out of state. Equally important was having family take our dog and treat him like their family while we couldn’t have him around.
FRIENDS & NEIGHBORS – most notably our bestie Tal that took a week out of his very busy schedule without blinking an eye. Driving us to Mayo and going to all our appointments with us. Being that extra set of eyes and ears when we were trying to understand things that we never thought we would have to know. For keeping me company when all Scott could do was sleep. Not to mention helping make the connection with the couple that allowed us to rent their lake home when we needed to be within 100 miles of U of M. All the friends that called, texted, sent cards and financial gifts and even helped with firewood deliveries.
You have to believe in a power greater than our own when you manage to meet a fellow BMT spouse while at U of M and quickly form a friendship based on shared experience. I can only hope that I helped her as much as she helped me. During the days when our guys were enduring inconsolable suffering and didn’t want us around we hit the trails and walked off our stress. Days they didn’t want to talk but we needed to talk. We continue to check back with each other and share our on-going journeys to recovery.
We also have the best neighbors we could ask for; watching the place all the time we were gone. Again, sitting with Scott when I needed to work. Taking care of my butterflies & our lone pet chicken, keeping the lawn mown, and even canning peaches from our tree.
It was great to have my family (only short 2) and all the kids here for Thanksgiving dinner
INSURANCE & TIMING – It’s nothing short of a miracle that I delayed my retirement last year and then again in April. By delaying it until August 1st, I was able to work pretty much up to his admission to the hospital and extend my 18 months of COBRA insurance as long as possible. Keeping a high-quality insurance program throughout this experience is priceless – well truly – worth at least $1.5m so far and growing. Between $15k drugs and $23k injections, we can’t begin to imagine the stress this situation would carry if you didn’t have good insurance. After meeting our fairly sizable deductible, everything has been covered at 100%.
GIFTS of MONEY – Accepting money was something that took us a long time to be comfortable with. The fact that we never asked for money yet people kept asking to give and ultimately forced us to accept was humbling. Not having to take money out of the farm while they had to pay others to do Scott’s work was something that was important for us to do and the gifts made that possible. We are forever grateful for so many people’s generosity.
FINANCIAL STABILITY – Divorce has a way of causing financial chaos. Thankfully we both were able to pay our dues and move on successfully. Always working and saving and living within our means set us up to weather the storm that this year brought us. Having adequate savings, along with the gifts from friends and family allowed us to get through the year without accumulating any credit card debt or loans.
RETIREMENT – Another benefit of being part of a relationship where both partners believe in living within a budget and not abusing credit cards allowed us to be in a position for me to retire early. That, and having worked at least two jobs throughout my entire adult life was finally paying off. I kept up the ordering, bill paying and payroll for the store while I was gone but I didn’t have to worry about the daily duties of a 40-hour week on top of everything else while he spent 40 days in the hospital. While we had amazing nurses there, there were a lot of situations that I was able to minimize or mitigate by always being there. When he wasn’t able to tell them what he needed or remember everything that was going on, I was able to keep the staff aware of all that was happening to him.
HELP/LABOR – After years of never having relief labor for Scott and his brother on the farm, a young man was made available to us; truly a godsend. He quickly learned the feeding routines and helped fill the void left by Scott’s absence. Scott’s two nieces stepped up and in to help where ever possible and while things weren’t the same, they all made it work. Staff members at my store were taxed and tested and immerged successfully. So many people giving 110% to help make our businesses continue as much “as usual” as possible.
Nurse Emily was just one of several outstanding nurses on the BMT team
STAFF AT U of M – Having been raised in a green and white home, seeking treatment at the maize and blue was an adjustment. One would think that something deemed a life-saving procedure would be administered by a highly skilled physician. In actuality, the stem cell transplant was done by a nurse. Throughout his stay, we were blessed by so many caring nurses. Not only were they always doing everything possible to make Scott comfortable, they were always asking to see what I needed as well. Overall advances in the whole process and medicines available to limit the effects of the chemo are also something to give thanks for. During his hospital stay, we felt we could always count on Emily the Physician’s Assistant and now we have nothing but praise for our Nurse Practitioner, Kari. The care given there is outstanding.
TECHNOLOGY – When I asked Scott for his top ten, he was able to come up with two. Of all things, he mentioned technology. I have to agree that without technology I don’t know how we could have navigated this situation. Allowing us such full and instant access to his medical information is pretty amazing. Keeping in touch with all our loved ones while not being able to see them throughout the entire process was priceless. Initially he was very hesitant about the Facebook group and then the blog but now he understands the need for the communication and fully supports my need to share our experiences.
I think probably most people that have gone through something like this can look back and say that it made them realize all they had. We are blessed with great families and friends and thankful for all that they have done for us. We are amazed by the whole process and the gift of life received from a stranger from a far-away land. Hopeful that someday we might be able to meet him and thank him in person.
More important than my opinion or rating of our blessings is Scott’s exact words; that “the promise of a new day” is the greatest blessing of all. That chance for Scott to be present to watch our family grow and age.
Weddng photo credit to Samantha Sutarova; I plan to have her photoshop Scott into this family photo taken at my daughter’s wedding. It’s clear this photo has a hole where Scott should have been that day; right in the center of us all.
I haven’t written much on Scott’s medical progress lately. It’s pretty much a very slow climb up a very long and winding road. The 100-day road to recovery. We have “illegally” moved home. After almost three months of transient living – the first 40 days at the hospital, followed by a couple Airbnb’s and our friend’s cottage, it’s good to be home. Or is it? For me, it’s back to the grind. For Scott; not so much.
Found it! Photo proof of golfing on December 1st – 2012
It’s probably a good thing to have given up the lake house before this last dumping of a foot or more of snow. Actually, here I think we only have 4-5 inches but my friends to the North report as much as 20 inches and its only mid-November. You might know, weather in Michigan is very unpredictable. My former golf partner and I have golfed as late as Thanksgiving weekend before. I doubt anyone will be doing that this year. I basically gave up golfing when I moved here but I know she was disappointed to report that she put her clubs away today.
We returned home so that he could feel more comfortable recovering in his own Lazy boy recliner and watch television on our 65-inch television. He’s binge-watching Storage Wars, Jade Fever with Claudia and Robin Bunce and their buddy scrappy Larry. Mountain Men, featuring characters such as Tom Oar who makes his living trapping and Eustace Conway who is trying to make his way in the lumber business. Shows that feel like a get-away from life in Michigan.
Me – I’m back working at the store as I have an employee off for what I’ll call medical reasons. Since Scott technically wasn’t to be left alone for more than four hours until the end of the 100-day period, I have tried to keep my shifts short. When I’m not there, I’m doing bookwork, working on catering orders, calling repairmen and doing battle with AFLAC. Still trying to get claims paid from our trip to Mayo Clinic in March.
Scott & Zeus have lots of quality time together these days
A few days after being home, I had some errands to run. Sure enough, like a dog who slipped his collar, I hear that he was spotted driving to town in his 1985 Pickup. He was quickly reminded of the revocation of his driving privileges and reprimanded. He’s not supposed to drive until the 100 days is up.
He bought another Jeep with a snowplow off Facebook market place that was supposed to be a parts Jeep. However, after watching about 100 YouTube videos on how to repair everything including the broken frame, he decided that it would be fun to have both Jeeps so we could leave one at the cabin in Canada. He’s spending a lot of time in the pole barn or “shop”. Not only working on the Jeep, he’s decided to make wood working his new career. We have plans to make a few items to give as gifts and possibly sell at the store. Our first project turned out to be a little more challenging than the videos made it out to be. He’s leaving the detail work for me and that may not be the greatest idea. The wood for our proto-type was hard so it made precision a challenge. We will see if I can do a better job on the next one. Unfortunately, after he does all the cutting and staining, if I mess up the detailing then the whole thing is trash.
His appetite has improved but not returned to full on eating. I’m doing my best to keep him eating something every couple hours and drinking lots of fluids. What was really shocking was his ability to completely eliminate all opioids within a short period of time. He’s down to about 5-6 drugs, twice a day. The magnesium IV is now every-other day. In preparing documentation for AFLAC, I received a copy of his 44-page hospital stay. Any guesses on just the stay; not including all the visits leading up to and since the transplant? I wasn’t too far off on my guess of $1m; the cost was shown at just over $890k. The n-plate shot that he has gotten almost every week since leaving the hospital is being billed at $23k. Plain craziness. Tomorrow is his first bone marrow biopsy since the transplant. They hope to be able to see a marked reduction in the scarring in his bones.
This weekends snow event was really disappointing. Not only did it kill business at the store for a couple days now, it totally ruined my long-awaited plans. As the men from our friend group planned to gather for cards and sharing of their big buck sightings of the past few days, the women folk were having a party of their own. Our party planner had been working on her event for weeks and was looking forward to hosting the sisterhood for a much-needed girl’s night out. Not only have Scott and I been going through our challenges, we’ve had a few of the friends group lose parents in the last couple months. I wasn’t the only one that needed a night out.
After months of being lectured about taking care of myself and doing something I enjoyed, tonight was finally going to be just that. As the snow up there started to add up to something treacherous, the only option was to cancel the festivities. I managed to kill the evening by watching a movie, playing games on my phone and eating everything in sight; trying to simulate the feeding frensy that would have been the party.
Eventually, we retired to bed where Scott read a couple pages and called it a night. I finally finished the worst book I have read in a long time and started a new one. I don’t know why I can’t start a book and decide – nope not going to waste my time. Once I pick it up, I’m committed to seeing it through. While by a noted author, the main character of the book was a very confused young lady living a pretty miserable existence. It should have made me feel pretty good about my life but it was actually depressing and I’m glad to be done with it.
Still not tired, I started another book. This one appears to be a refreshing change. Something I can relate to in just the first few pages. Another gift from a well-meaning friend for passing time during this recovery phase. This book focuses on a newly divorced woman in her 50’s who quits her job and moves to Saugatuck Michigan to renovate her family cabin into a bed and breakfast. Certainly, a fantasy I can relate and escape to.
Being home creates its own challenges and growing pains. I joked with Scott today that we need to check with the doctor and see if he’s cleared to empty the dishwasher yet. As I return to work as usual, other than not having a good paying job, I’m back to attempting to work, cook, clean and manage the finances on top of the duties of caretaker. All while trying not to get caught up in all the thoughts in my head; knowing that its not business as usual yet. So much of our life is still not functioning and for him, knowing that it never will be the same.
Sharing a kiss in Mexico – 2013
Watching the farm operate from a distance and not being part of it. Not being able to take the cold weather like he used to. Having to take rest breaks throughout the day. Me, I miss our playfulness; kisses and his smiles. We continue to limit our visitors and enforce strict hand washing and social distancing rules. We have self-imposed no kissing to make sure we aren’t passing cold germs back and forth since he has no immunity. He’s still coughing and sneezing regularly. They say it could be this way for a while yet. Our physical relationship has been on the back burner until his counts are where they need to be. Most days I feel more like Nurse Ratched than a wife.
Nearing my favorite holiday; Thanksgiving, I know that while I have so much to be thankful for, I find myself experiencing a sense of grief; once again missing what life was like before cancer. As I battle another night of insomnia, at least he is finally sleeping and we are safe and sound at home together. I guess I will read for a while. I can almost bet that when I find myself ready to nod off, that the dog will need to go out. Gee it’s great to be home.
WhatDoesn'tKillYouGirlMakesYouStronger. 