Project: Transplant

Yesterday I released a new, personal project on my Facebook page. For months I have been brainstorming, planning, overthinking, and strategizing around starting a blog to share Justin’s bone marrow transplant journey. After hours sitting at the hospital working on the formatting, finalizing the first post, working on the images, and perfecting the finer details of the site I launched Project: Transplant. It had a banner first day with over 130 views in eight hours, I am grateful for the outpouring of support and the ability to share Justin’s story in a meaningful and engaging way.

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If you’re interested in following Justin’s journey, feel free to check it out! Be sure to follow via e-mail to get updates when posts are published.

To read more about my story as a caregiver, see The New Normal category highlighted in the menu at the top of my blog home page.

A Letter to the Person Saving My Best Friend

letter

I’ve thought a lot about you in the last four days, which is interesting considering I’ve never met you and chances are that I never will. There are laws that keep us a part. To be honest, I still struggle to understand those laws, but I know they are there to protect us both.

I wonder where you’re from, what your life is like, and your motivation to do such a selfless thing. Are you spending time with family this weekend? Do you celebrate Christmas? Is there snow on the ground where you are? Are you anxious about what all of this means for you? I wish I knew more about what this means for you.

All I know is what it means for me. It means that I have the potential to live out the rest of my life with my best friend, that my husband might be able to think beyond the next 18 months, and that we could, once again, push play on our lives. You see, for the last year, almost exactly a year, our lives have been on hold. We have been living week to week, treatment day to treatment day waiting for the appointment where they say we are ready for the next step. Two months of hoping it was just the flu or bronchitis, another month to find the right treatment plan, and six months of treatment. The time has come, you’ve entered our lives and yet, I know no more about you than any stranger I see walking down the street.

But here I sit, on Christmas Eve, thinking about you and hoping you realize the gift you’ve given my little family. We are able to spend the next few days enjoying time with our families and with each other. We are starting 2017 knowing there is a plan, and what the next step is. It’s comforting. You’ve offered us comfort for the holiday season, and come the day when our lives collide, you will give us hope. Hope that, finally, there is a treatment that will give us more time. It will be the biggest fight of our lives, there will be days where we will be terrified, tired, hopeless, and desperate for relief. There will be days where I forget to be grateful, for you, your family, your selflessness, and the gift you gave us. Please know, that even on those days, deep down, I will be thinking of you.

I hope that someday I will be able to express my gratitude so that you will be able to feel it. I hope that on this holiday weekend that you are happy, that you find time to laugh, and spend time with the people you love. Please know that we will be able to do that because of you.

One in the Crowd

Standing in a dark, crowded room you can feel the anticipation from the crowd. People are filing in, slowly staking claim on their spot on the floor. You watch the room fill in around you, as the lights go down and suddenly this room full of strangers are instantly connected as  the atmosphere in the room is directed toward the stage. Your favorite musician has taken the stage.


Usually, I am not one to enjoy a concert experience. Crowds make me anxious, the words “General Admission” just make me think of sweaty crowds of people spilling beer, and most of the time the music doesn’t sound nearly as good as it does on the record. There is one exception to this, for me. I will travel far distances to be in the crowd at an Andrew McMahon show. His music has been a huge part of the last ten years of my life.

It started with one song, showcased on my favorite television show and a trip to the music store, back in the days we had music stores. I bought the Jack’s Mannequin Everything in Transit album and it remained in my car’s CD player for the majority of the life of that car. I knew all of the words to every song and felt a connect to the music that I had never felt before. When I realized they would be in Detroit for a concert that winter, I immediately bought tickets for my sister and I for Christmas. Little did I know, she had the same idea. Thankfully my mother managed to make sure only one of us purchased the tickets. 

Waiting in line on that freezing February evening, in downtown Detroit, saying I was annoyed would be an understatement. We were in line blocks away from the venue surrounded by screaming teenyboppers. It was the first concert I had been to in a venue that primarily had general admission, no chairs or tables, just a room full of bodies. We found an elevated spot to call our own and waited, for what seemed like hours, for Jack’s Mannequin to take the stage. The crowd erupted once Andrew walked to his place behind the piano and before I knew it I was in for the most impressive show of my life. You can tell, by the way Andrew performs that he loves what he does, he has fun, he jumps, dances, and practically beams from behind his mic. I was hooked. 

I didn’t realize at the time but, later my connection to this man and his music would only strengthen as I learned about his battle with leukemia. In his early 20s, Andrew was diagnosed with leukemia and ultimately underwent a bone marrow transplant. Before a few months ago, I had no idea what that meant and couldn’t relate to the year his life was put on hold. 

Since that first show I have seen Andrew McMahon perform three other times, once just this last weekend in Grand Rapids. My sister and I drove the 143 miles on a Thursday evening to pack in with the rest of crowd to see Andrew McMahon in the Wilderness perform, and for a couple of hours we were all transformed to an alternate universe, listening, singing, dancing, and laughing. 
The week before we left, I found myself sitting at home browsing the list of documentaries available on Netflix. I came across “Dear Jack” the film about Andrew’s battle with leukemia. I spent the majority of the following hour crying as I watched this musician that I adored go through this fight I knew inevitably would be something I’d watch my husband go through. I was thankful for the opportunity to see it, but also terrified. Everything became very real, very quickly. 

It was oddly comforting to see that the man who made my favorite music knew about this world and used his experiences to push forward in his art. It wasn’t a coincidence that I found myself, new concert t-shirt in hand, standing in a room full of people listening to his story all over again. Eleven years post transplant and I was one of the many in the crowd, cheering him on. As usual, there was a table in the back of the venue taking registration for bone marrow donors. With tears forming behind my eyes, listening to the music of my favorite musician, I joined my sister at the table and officially became a member of the bone marrow donor registry. 

I turned back toward the stage just in time to hear his final song, one of my favorites and savored the moment. The moment my love for music became a little bit more. 

The New Normal: Summer 

img_0671Monday was the first day of summer. Michigan was hot and humid, mostly overcast throughout the day. There was an impending thunderstorm that didn’t happen, which means we are in for six straight days of sun.
Summer isn’t my favorite season. I don’t mind it, usually summer means a couple of trips up north, sun glasses, flip flops, and spending time outside. None of those things are at all disappointing. I am already spending more time outside than I usually would, it’s definitely a benefit to having your backyard patio right outside your door. I like the stillness and quiet of the outdoors, at least when I’m not distracted by the bugs making me itchy.

On Monday, after a day at work spent 98% indoors, only to go outdoors and realize that it was extraordinarily humid, I had no evening plans to spend time outside. Bruno had a different set of plans. He was particularly antsy since Justin wasn’t home so he kept ringing his bells to go outside. Eventually, I turned off the TV, closed my laptop and just committed to staying outside with him. He ran, chased lightning bugs, sniffed our neighbors, did tricks for treats, played with his soccer ball, and did a sniff perimeter search.

When Bruno’s interest in playing fetch evolved into sniffing every inch of our fence line I decided to sit down and take in the sights around me. The storm forecast had vanished and we were left with a cotton candy sky that faded from blue, to orange, to pink, and back to blue again. It was pretty awesome to see how a random day, mostly aiming for a storm, turned into a pretty decent night.

I let Bruno finish his figure eight running marathon, heard a mosquito buzz in my ear and headed inside. A little breath of summer to cleanse the soul and recharge my batteries. My formally antsy puppy, now all tuckered out curled up at my side on the couch and we settled in for the night.

This summer will be a good one. The looming turn our lives are going to take this fall is encouraging us to spend time appreciating each other, enjoying our time, and living our lives without worrying what the bone marrow transplant will bring. It will come when it comes and it will bring what it will bring. In the mean time we will not waste our time over analyzing, worrying, or waiting.  There is no sense in wasting our summer and all of those cotton candy skies.

For the first time in my life I am not willing the fall to come. I’m comfortable living in this period of transition. We’ve become comfortable here. The fall being uncertainty and the biggest fight of our lives. I know Justin wants to get back to his life, I can’t imagine going through this without having work to occupy my time and mind. I want that for him, but in the meantime I will enjoy my summer with him and hope that the fall doesn’t rush to get here too quickly.

Here’s to spending time outdoors, wearing flip flops and sunglasses, road trips up north, and the comfort that summer brings.

The New Normal: We’re Not in Kansas Anymore

I always get excited about a new month. Nothing really changes between the 31st (or the 30th, 28th or 29th) and the 1st, but the transition from one month to the next is usually pretty refreshing. It’s a chance to start fresh, and there’s nothing wrong with that.

February was rough. For a short month it was packed with, what seemed like, more than 29 days worth of stress, worry, and questions. Some questions got answers and some were added to a list to be figured out at a later date. As if February wasn’t hard enough, it was leap year and we were “lucky” enough have one extra day. Our extra day was spent meeting with the bone marrow transplant doctor that we had been referred to as part of Justin’s latest treatment plan. Here we were again, listening to a man we had just met, explain what was happening in Justin’s body and what our next steps are.

There’s no flexibility with a bone marrow transplant. You are essentially being told that the next year of your life is being put on hold. We were shocked.

We’re not in Kansas anymore ToTo. 

This was no longer the treatment process we knew and had gotten used to.

The night before his appointment, I spent some time putting together a binder to organize all of the paperwork that we had been given recently. I was getting overwhelmed with all of the information being packed in my brain and I knew eventually I wouldn’t remember the simplest of details. I felt prepared and like I was, finally, ahead of the game. As the doctor and transplant coordinator kept talking and handing me folders, packets, study information, and things to fill out I just kept thinking…

“Damn, I’m going to need a bigger binder.”

It felt like we had fallen into another universe, and again, had left with just as many unknowns as we did answers. As we walked through the maze of the main hospital and parking garage I felt extremely thankful that Justin’s dad had come with us that day. I just wanted to shut my eyes and turn my brain off for a few minutes. I was asleep before we hit the expressway.

When Justin and I got home we didn’t really talk about the details. There was no use trying to control things now. A bone marrow transplant won’t happen for at least four months, and if we learned anything from the short month of February, it’s that we have to take this one step at a time. Stupid extra leap day.

The next morning I got to work early to make up some time I had missed the day before, eventually I realized that it was no longer February. It was a relief. It made processing the year ahead of us a little less daunting to think about. I felt like a new month gave me the motivation to leave the shock behind me, with February. A new month and a new mission.

I can’t help but think that the bone marrow transplant appointment being on the last day of that awful month was more than a coincidence. I’m not usually one to believe that things happen for a reason, especially lately, but whatever made it happen, I’m thankful for it. Justin and I have a fight in front of us and we are as ready as we can be. It will be different, more difficult, and scarier than any other battle we have seen. We’ll get through it, one month at a time.