My Maytag man

Have you seen the commercial where the Maytag man is kneeling in the laundry room personifying a washer and also a dryer? A woman doing the laundry hits an imaginary button on his shoulder and he turns into this Hulk of a washer. Right before our eyes, the Maytag man becomes muscle-bound. The superhuman could probably take on the likes of a king size comforter that needs washing. Or maybe he represents a hefty load of about 14 beach towels. 

I know that I have referred to Dave as the energizer bunny, Superman and other things. But this week, he’s the Maytag man. The clinical trial medicine has mended his mouth, and the sores have virtually disappeared. His appetite is enormous, and he is making up for lost time. One would think every meal I serve is his favorite. 

In just 21 days, he has gained almost 20 pounds. After going nearly 11 weeks without eating anything substantial, Dave’s appetite has taken on a new perspective. Weighing in at 180 (still 30 pounds below his normal weight), his color is far from being a dull gray, his energy level has rocketed, and his voice has the pep of the Michigan marching band. At this rate, he will soon mirror the Maytag man, who is always ready to take on the toughest of jobs. 

The holidays are approaching, and I know that some Christmas lists are pretty interesting. On my list is a washer and dryer – for real. Wouldn’t it be cool to wake up to a washer and dryer with a big red bow on it? I know I won’t be that lucky. But, I am feeling blessed that “my” Maytag man is finally showing positive signs toward recovery. And by Christmas, Dave will be ready and willing to help me with laundry – along with much, much more. 

He’s on the pill

A little unusual for something like this to happen. A man who begins to take the pill is a drastic measure. Okay, it’s really not that pill, but hopefully it made you laugh. I know I cracked myself up! 

Dave’s mucositis will not heal entirely on its own. He is now resistant to the medication designed to heal mucositis. The reason for this is because he has been on the medicine far too long. Most of the mouth and throat ulcers, which have plagued him for over 10 weeks, have slowly been repaired by the rise in his immune system. But, a few sores remain and the sores will be a revolving issue unless addressed with a different medication. Once again, we are running out of options with medications as this continues to stall his recovery. 

This week, we met with the infectious disease doctor and he suggested yet another clinical study for Dave. The study has two options. One option requires hospitalization with constant IV meds, one of which Dave is not a big fan. The other option is a pill (pritelivir) that he would take daily. This would require us to report to Karmanos every other day in order to measure his progress. The trial could last 28 days, demanding 14 road trips to Detroit. The 130-mile round trip is already becoming old; nevertheless, getting “the pill” is easier on his kidneys and presents fewer side effects than the IV hospitalization option.

The bottom line is the choice was not up to us. It is randomized to which option you will participate. We said a quick prayer as we waited to hear if Dave would be hospitalized or put on the pill. All Saints Day has always been a blessed day for us personally, so we never doubted today would be any different. He was chosen to participate with option No. 2 – taking the pill. He will be one out of 30 participating in this national clinical trial.  

So, he’s on the pill. Hope it works! 🤣

Drawn in by His eyes

Working as a nationwide trainer for s3strategies, I have the convenience of which trainings I select based on our schedule at home. The last 19 months have made it difficult to do as many as I normally would. So, knowing that Dave’s blood counts were showing improvement, I welcomed the opportunity to present at a state conference in Florida. 

While I was in the Sunshine State this past weekend, I was also fortunate to attend Sacred Heart Catholic Church in Punta Gorda. Dave and I have attended mass there numerous times and love this church for multiple reasons. Father Jerry Kaywell is the adored pastor, who has welcoming eyes, an infectious smile and is hilarious. Parishioners are drawn to him from the moment he warmly delivers his welcoming prayer. A hush falls over the church as he asks everyone to breathe in and out three separate times, begging them to leave their busy minds and schedules behind as they let Jesus in. Additionally, he invites the congregation to connect with the three readings as he brilliantly weaves scripture into his homily.

But, it’s not Father Jerry’s eyes that I am drawn to in this huge church, which is always filled to the brim. The choir is at least 30 well-orchestrated voices with a five to seven-piece band that accompanies them. One would think that would be my favorite entity at Sacred Heart. It is a choir I would be blessed to be a member of for sure. Surprisingly, the choir runs a close second only to the voices that fill this church from the entire congregation. The music is so powerfully moving with voices of over 600 in attendance. I’m sure it floods the streets surrounding this beloved church.

The eyes to which I am drawn are the ones that meet me every time I walk through the entrance and dip my hand into the holy water. His eyes pierce through me and read me as if he has known me my entire life. And He has. The mosaic tile of Our Lord Jesus behind the altar is the masterpiece of this church. It spans the entire wall, and try as I may this past Sunday, I could not capture His beauty in a picture. But every time I attend mass here, he captures my mind, my body and my very soul. 

This week, the message was just as powerful as ever. Father Jerry reassured us that, “God will not leave his children alone. He is persistent and unfailing. He listens and promises to answer our prayers.” As if he was talking directly to me, he went on further to say, “Jesus says He will heal you, but He is rewarding others through you. He will reward you, when you step through the gates of heaven. That is your final blessing.” 

Then, the choir began the offertory hymn and a calm fell over me. As I sang along, “You gave us healing our hearts hungered for” a tear slipped down my cheek, feeling blessed beyond words and experiencing such surrender.

As if this wasn’t powerful enough, our call came yesterday that confirmed the very song I sang on Sunday. He gave us healing our hearts hungered for. Dave’s bone marrow biopsy came back and indicated that he is cancer-free. There is no sign of PH+ and no mutated cells. And yet again, we are graced with another miracle. Our God is so good. My giving thanks to the One who made this happen seems miniscule; my thousand thank yous would never be enough. So, please take a moment to thank Him for listening and hearing your prayers. He saw all of us on our knees and heard our pleas. He did give us the healing that we had hungered. 

Lucky Eleven

No, this is not a shout out for Janet Evanovich and her hilarious book series. But, last Sunday, the Houston Astros pulled it out in the 11thinning in the ALCS. Dave and I went to bed at 11:00 though, not knowing that the game would go 11 innings. When Carlos Correa banged a walk-off home run to win it, it tied the series with the Yankees at 1-1. Are you starting to see a pattern here?

Not that we are die-hard Houston fans, but we are Justin Verlander fans, so it would be satisfying to see them take home the crown. JV is leading the league in WHIP, WAR and wins. He has allowed the fewest hits per nine innings, too. He leads the league in innings pitched and games started. So, clearly our vote for the Cy Young goes to JV, making it his second time to receive that prestigious award. 

This is coincidence I’m sure, but Dave had his 11thbone marrow biopsy on Monday. He is probably leading the league in that category as well. His slow recovery is about as frustrating as watching the Detroit Tigers have one of their worst seasons ever. Our trips to the clinic always revolve around his blood counts and any new symptoms. And on Monday, his counts presented to be more promising than they have in a long time. In fact, we got a little emotional when we saw them. His mouth is down to one sore that is now smaller than a bottle cap. Even though he is eating better, it has not been reflective on the scale. Losing yet another 5 pounds this past week is about the only thing that raised our doctor’s eyebrows. Our goal for next week is to come back five pounds heavier. Heck, I know it can be done. I’ve done it myself a time or two. 

We are excited for the results from this bone marrow biopsy. It will be another miracle. Prayers answered. Again, thank you for being a part of our journey. We are counting on lucky 11 to be a true testament of all that the Tag Team has accomplished. 

There is no clock in this game

For as long as I can remember, Dave has told his players and coaches that there is no clock in this game. For those who watch baseball, sometimes you wish there was a clock. Maybe it is a nine-inning sloppy game that sees the teams make 10 errors between them. Add in the 12 walks and baseball has taken on a new look. Possibly, it’s that five-hour, 14-inning game that has gone back and forth. Both teams have exhausted their pitching staff. Neither team shows any emotion. Nobody seems to care. The fans are fidgety with the poor play. Will this game ever end?

But one thing is for sure. Nowhere in baseball is there a rule that states a game can not continue after a certain length of time. It could take two hours or it could take 20 hours.

There is no clock in baseball. 

There is no clock in this leukemia journey that we are on, either. We learned with the first bone marrow transplant that 100 days post-transplant was to be celebrated, only to find that the 107th day made that celebration wishful thinking, only. We have realized that with each blood draw, we hold our breath and wait for the counts to lean closer to a 9-inning crisp victory than a long, exhausting 14 inning game, which is loaded with miscues. But either way, we keep moving forward in order to put a “W” in our win column.

Last weekend was no different. While sitting in the emergency room waiting for results, I prayed that it was something simple and begged for God’s mercy. “Enough. Dave has been through enough,” I said over and over again. I’m not questioning God’s wisdom, but only asking for a 7th-inning stretch. We need time to rest our weary bodies, time to regain strength and time to enjoy some normalcy.

God has been good to us all along, but this time for sure. As always, He answered. He blessed us with simple. In addition to the UTI and blood transfusions he needed, Dave has a common cold. That’s it. This time, it is as simple as a cold. I know you are saying, “You’re kidding, right”? but even a cold right now sent him to the hospital for six days. It reminds us that we need to be vigilant. We must avoid any environment that could compromise his health. Because at any given moment, we may need to drop everything and head to the hospital to evaluate the seriousness of any new symptom. Because, there is no clock in this game either. It could take six months to a year before he is even able to attend a ball game. When it is safe to attend, I think we would enjoy a 14-inning game. That’s actually the best part.

There is no clock in baseball. 

Fall cleaning jogs memory

I had a déjà vu moment this weekend that brought me back to a childhood memory. Walking outside, my nose felt the nip of a chilly day but I was embraced by a warm breeze. The crunching of leaves under foot and the smoke from a nearby fire clearly spoke a fall day. The sound of a leaf blower and the smell of burning leaves confirmed that summer has ended, and fall cleaning is in full swing. It took me back to a time when, as a kid, we would have to rake the yard, put away the summer chairs and cover the pool. I found myself smiling with the memory of it all, and to think that a warm breeze and crunchy leaves took me to that place.

Dave took a trip down memory lane, too, but it did not bring a smile to his face. In fact, he was begging me not to take him on this trip. He spiked a fever Friday night, and with a trained watchful eye (more like a mom’s instinct), we headed to Karmanos. He was not pleased with me as we sat in the E.R. for five hours while they did the full work up. But in the end, diagnosed with a UTI and also in need of two blood transfusions, he was admitted. As of Sunday, we are still here as they complete fall cleanup on Dave. As the doctor on rotation has said several times now, this is not unusual for a BMT patient to need a tune-up.

We hope to be back home either Monday or Tuesday so we can rake leaves and think about taking the boats out. We have our own fall clean-up to address.

Sticktoitiveness

6. It’s at the top – so that means eat it first!

There have been times in my life when I become obsessed with doing whatever it takes to accomplish a goal. Dieting is the first thing that comes to mind. This is a judgment-free zone, right? Well, losing weight has always been a challenge for me. I love certain types of food, and you have already guessed my passion for sweets wins over fruit and vegetables. I’m pretty sure I can say that this is an inherited trait. My dad yo-yoed on the scale as well – most likely for the same reasons. But, when I decide it’s time to drop the unnecessary weight, I’m all in and don’t stop until I can proudly jump into skinny jeans. Dieting. Never easy, never loved it but a necessary evil. Sticktoitiveness would get me where I was going.

Last weekend, a day after a good rain, Dave decided to build a fire under a twinkling sky of stars and a glowing moon. Damp enough to hinder a fire, he struggled to get the wood and kindling to take off. After 15 minutes, I remarked, “Just give it up and we can enjoy our fireless campfire and let the moon light our night.” He looked at me and said nothing, but his knit eyebrows implied, “Are you kidding”? Five minutes later, the fire was worthy of s’mores and pudgy pies. He had a good case of “sticktoitiveness.”

Dave seems to be in a situation that demands that same attitude. He is still struggling to eat, and the sores in his mouth and down his throat still determine good days or bad days. Over the weekend, he finally ate some solid food, and I did the happy dance I do when the scale tips the right way for me. It took him forever, like a kid who wasn’t allowed to leave the table until he ate all of his brussel sprouts. His head was in his hands and he just kept taking big breaths. Only three more bites…two more bites…last bite and then you can leave the table. But he stuck to it because he knows he has to. It wasn’t easy, didn’t love it but necessary for survival.

Later that night, still hungry but avoiding the need to swallow, I offered Dave a late night shake. Unfortunately, that novelty has worn off and he’s back to admitting everything sounds good and nothing tastes good. He declined the cold, smooth shake. Inevitably, the scale was not kind to him yesterday when he visited Karmanos for his labs and evaluation with Dr. Uberti. Where I would be doing the happy dance if I lost 12 pounds in 14 days, we both just grimaced. Ughhhh. How I wish I could drink a shake for him if he would just accept the calories for me.

Dave has never been a quitter and never will be. His sticktoitiveness keeps pushing him forward to the days ahead where he will be able to eat anything he wants. We know that day is just around the corner – but dang – this has been a long block to walk.

Way to a man’s heart

Dave’s favorite- tapioca pudding

If you’ve heard this expression before, you will know this to be true. A way to a man’s heart is by making him – tapioca pudding. Well, the saying really says “through his stomach,” but on these days, that saying does not apply to Dave.

Our life right now is all about soft foods, like tapioca pudding. Most of you know that Dave chooses extremely healthy foods. He opts for a fresh piece of fruit or vegetables over most any sweet delectable. I, on the other hand, insist that chocolate comes from a plant.

“Chocolate comes from cocoa, which is a tree. That makes it a plant. Chocolate is salad.”

I imagine chocolate could be mixed in with tapioca pudding, but I actually haven’t tried that yet. Instead, I make this dessert just the way he likes it. Now if you’ve ever made this pudding, you know it takes forever. The fluffy recipe calls for whipped egg whites that seem to take longer to make than my bed – times 10. As the egg white mixture stands with pointy peaks, I bring the remaining ingredients to a rolling boil, stirring the entire time. Just when I think it is almost boiling, I realize it’s only halfway done. Last week I made it, and I watched a full episode of “The Marvelous Mrs. Maisel.” I just stood there stirring and laughing because the show is pretty funny.

What’s not as humorous is how long Dave has been eating soft foods. We are going on almost four weeks now that the mucositis still effects his mouth, ears, throat and esophagus. Healing has been a very slow process, seemingly taking forever – much like making tapioca pudding. Just when we think we detect healing in his mouth, new sores emerge.

There is wisdom in purchasing tapioca pudding from the grocery store. It is so much quicker, but it is not quite as delicious as homemade. Likewise, I’m sure mucositis will heal in good time. Dave’s appetite will return, and he will eat everything in sight. Until then, we pray with all of our heart that He is cooking up something special for all of us. Complete healing.

tapioca pudding … with chocolate

There’s only one way…

… and that’s the right way. In the wake of Antonio Brown being dismissed from the Oakland Raiders’ football team, I was inspired. We often see displays of unsportsmanlike conduct in sports. For some players, they may think that they are bigger than the game. Others are disrespectful to teammates and coaches. In some cases, there are a few who simply don’t honor the game.

Dave modeled his expectations in order to honor baseball, which he figures to be the greatest game on earth. One example comes to mind of Dave creating a positive atmosphere and respecting the game. It was a rule he still requires to this day. There’s only one way for coaches and players to wear a hat, and that’s the right way. The team logo should be in the front. Bills straight ahead.

A few years ago, Dave was sitting at a stop light listening to his favorite country music station. His windows were down and he was soaking in the beautiful sunny day. A car pulled up alongside Dave and the music was bumping, probably vibrating the white stripes separating the lanes. As anyone would do, Dave looked over to see who was making the racket. It was one of his former baseball players wearing his hat backward. JB looked over to see it was his coach from the 90s, and he smiled. He quickly reached behind his head, tugged the bill of his cap, and turned his hat around – the right way. Each man smiled, waved and continued on his way. Dave made an impact on JB back in the 90s, and it still resonates today.

We all have choices along our way. We can choose to do things the right way and be role models for all generations, young and old. Being a person of character, integrity, honesty and honor are important. Having high expectations, being motivational, and being inspirational are significant too.

It seemed fitting to make this connection to the Raiders’ decision to part ways with Brown. That was inspirational. That organization has chosen to choose integrity, honor and respect. They are taking sides and have chosen to send a message that one player is not bigger than any team. Showing respect, not only for the game but for others, is monumental. This is a message for all of us to absorb.

There is only one way, and that’s the right way.

Doctor’s orders

We’re pretty good at following doctor’s orders by now.

Doctors have always been crystal clear about staying physically active. The only way out of the hospital is to “walk yourself out.” So we walked – a lot. They have constantly questioned if Dave was eating enough and drinking enough water. His intake and output was measured and documented. So he ate soft, liquidy foods even when he wasn’t hungry. He drank water – as much as he could stomach. And even when his throat felt like a coral reef and the roof of his mouth looked like moon craters, he needed to be able to swallow all medications before being discharged. So he winced his eyes, curled his toes and swallowed them one by one – over 25 pills in a day. It wasn’t easy to be Dave the last few weeks, and it wasn’t easy to watch him be the determined man we all know him to be.

Goal driven to an extreme, Dave’s barometer was to be discharged from the hospital the same number of days as his first bone marrow transplant. He was out in 21 days last October. He made it home in time to take our grandkids trick-or-treating.

I, on the other hand, was cautiously warning him not to set his sights so high in order to avoid disappointment. Even Dr. Uberti warned that this would be tougher and would take longer. Denise, his nurse practitioner, dramatically warned it would be “rrrrrroufffffffer!” As you can imagine, Dave was not in the least bit intimidated by anyone’s predictions. His goal remained to be in and out in 21 days.

We are required to stay close to Karmanos, so even the slightest change in his health is addressed immediately. Once assured that we were staying just blocks away from the hospital, Dr. Uberti agreed it was time to discharge Dave. On Wednesday, the 21st day, he not only walked out of the hospital on his own, he walked up three flights of stairs to the apartment we are renting.

Dr. Uberti also gave us one last directive before being discharged. He told us that we are allowed to go back home for the weekend. So, we are going to relax, enjoy the lake and report back to the clinic on Monday. Doctor’s orders! We are more than happy to oblige. Because, we’re pretty good at following doctor’s orders.