How It Ends

Have you seen Big Fish? It’s a movie that also has a stage adaptation. If you haven’t seen it, I cannot recommend it highly enough. You will see glimpses of my Dad in the storyline. My Dad was a wonderful father, husband, manager, and friend.

I miss him every day.

If I can, I’d love to use this blog to speak with him…

Hi Daddy! Four years?!? How has it been four years… It feels like just yesterday that me, Denise and Jessie were sitting at your bedside, reminiscing about life with you. We watched your breathing… there were so many times that you’d go a long time without a breath. Each time my own breath would leave me. I knew you had to leave but, oh how my heart was breaking.

I arrived in Milwaukee on May 8th. It was my birthday and I had come to help Denise, Jessie and Dave watch over you as you lived out the rest of your life from your home, just like you wanted. That plane ride was difficult… I couldn’t get there fast enough but the heaviness of what would greet me was heavy. But, wouldn’t you know it, your Grandchildren arrived to meet me and had big “Happy Birthday” signs. I was home. I was loved.

That is the world that you created. Home. Love. No questions asked.

God… how I miss you!

Mice on Main was a favorite activity whenever you visited Greenville. Remember how many times we would walk downtown to find each mouse? Remember the scandal when one of the mice was stolen? We stopped for coffee or ice cream every hunt. I know it wasn’t about the mice, it was about us spending time together.

The gift of time is something we learned together. Remember how excited we were the first time I received your blood when I was battling leukemia? You gave as often as you could. I will never be able to adequately explain how it felt to watch your blood go through the iv line into my port. You literally helped save my life. We laughed. We cried. We prayed. We talked. We were silent. You never missed a day to come stay with me in the hospital. You put your life on hold to help me live. I have your notes from those days, do you know that? Every day you wrote how I was doing and what they doctors would say. Thank you for documenting those days.

Luna misses you, too! Every time Denise comes to visit Luna looks for you. Do you remember the day that you and I went to the animal shelter to rescue Luna? She fell in love with you instantly, which is how I knew she would be a loyal and smart member of our pack.

Greek Fest in Greenville – we had so much fun every year! You always had to make sure you got your lamb sandwich, Greek French fries and delicious lemonade. It was a tradition. Greek Fest is this weekend, do you know that?

Once you couldn’t drive your car anymore, you, Denise and Guy bought a fresh set of wheels for you to drive around your house. Do you remember all of the times we spoke on the phone and you would tell me how many trips you made around “the loop” – you had so much fun! I loved hearing you enjoying your time. You missed Mama so much… I know time was hard for you.

You loved your home! It was your desire to pass on at home. The days of May 8th – May 15th are some of my most cherished memories. They were filled with love, laughter, fear, doubt, visits from family members and hospice nurses… Then you became an escape artist! Do you remember that? You could get out of bed and try to go “somewhere” so fast it was hard to catch you. We never missed catching you, though. Dave, Denise, Jessie and I took turns sleeping in your room. Oh the shenanigans the other three got up to when wasn’t our turn to be with you, we would watch you two on the monitor and hide George around your house. Love and sorrow. Pain and happiness. Light and dark. Beauty and tears. We were living somewhere in between…

That last day, May 15, 2021, you weren’t talking. Your breathing was sporadic and the “death rattle” was there, the marbling was there… Denise, Jess and I were at your bedside and Dave had prepared to go for a run. He went out the door and then came back into your room, put his hand on you and said, “I’m going for a run, Dad. Thank you for giving me the gift of running. You don’t need to wait until I’m back, Dad. If you need to go, it’s ok.” Dad… you then mouthed, “I love you, D…” and Dave went outside for a run. He didn’t make it to the stop sign before Jessie called to tell him you were gone. I don’t think you took another true breath once you told Dave you loved him. All four of us surrounded you, told you how much we love you, and to please tell Mama we love her too.

Thank you, Daddy! For the life you created for me… My heart is broken and I miss you so very much. Please don’t worry about me, though. My Rock loves me and protects me just like you said he always would. You were right! My Rock is my soulmate. I’m so thankful for the wonderful relationship that you two had!

Four years. A moment. A lifetime. The blink of an eye. It all goes so fast.

Grief is a small price to pay for the extraordinary privilege of love. ❤️

Just… No More

This time last year I had the privilege of helping with Into the Woods at Greenville Theatre. This day last year was World Cancer Day. Light with darkness sprinkled with hope. That’s the tag line of my life.

Sondheim wrote complex themes and lyrics. The genius is that you hear and feel them where you are in life. It resonated quite differently with me last year. The song, No More, has become an anthem. If you haven’t listened to the song I highly recommend it. It takes place in Into the Woods when everyone is reeling from current events… They are, ironically, in the woods and are surrounded by giants, witches, loss of loved ones… The grief was overwhelming and hope was invisible…

Here are my thoughts… then and now, through the words written by Sondheim.

Baker	Me
No more questions,	What’s wrong? How do you feel? What’s your pain level?
Please.	It’s hard to answer these honestly
No more tests.	Testing fatigue
Comes the day you say, “What for?”
Please- no more.	Please… no more.

Baker’s Father
They disappoint,
They disappear,
They die but they don’t…

Baker
What?	That makes no sense, like most of life these days…

Baker’s Father
They disappoint	I disappoint those I love
In turn, I fear.	and my life is a burden
Forgive, though, they won’t…	they shouldn’t forgive that burden

Baker
No more riddles.	stop
No more jests.	trying
No more curses you can’t undo,	to
Left by fathers you never knew.	find out
No more quests.	what’s wrong

No more feelings.	I’ve turned my feelings off
Time to shut the door.	It’s easier to be alone
Just- no more.	Just.. no more

Baker’s Father
Running away- let’s do it,	Validating the idea of escaping into myself
Free from the ties that bind.	or literally running away
No more despair	Escaping will bring peace
Or burdens to bear
Out there in the yonder.

Running away- go to it.	Go ahead… shut down
Where did you have in mind?
Have to take care:	But, where to go?
Unless there’s a “where,”
You’ll only be wandering blind.
Just more questions.	I can’t escape my pain or worries
Different kind.	There will always be questions.

Where are we to go?	Is there a place to go?
Where are we ever to go?	Is there a time I should go?

Running away- we’ll do it.	Pulling into myself sounds right
Why sit around, resugned?
Trouble is, son,
The farther you run,	The solution never comes from running
The more you feel undefined
For what you’ve left undone
And, more, what you’ve left behind.	Shutting down will cause heartache to my Core 4 groups.

We disappoint,	Guilt
We leave a mess,	Guilt
We die but we don’t…	No one is alone… not even me

Baker
We disappoint	Truth
In turn, I guess.	and
Forget, though, we won’t…	time to chose what to do now…

BOTH
Like father, like son.	Can I become a better version of myself?

Baker
No more giants	I’ve feared the unknown
Waging war.	…the uninvited guest
Can’t we just pursue our lives	Can’t I just be happy
With out children and our wives?	with my Rock and Children?!!
Till that happier day arrives,	…when I’m whole
How do you ignore	How do I ignore
All the witches,	all the appointments,
All the curses,	all the hurtful things people say,
All the wolves, all the lies,	all the guilt for being a “miracle”,
The false hopes, the goodbyes,	promising doctor apointments, all of my friends who have died,
The reverses,	the wishing,
All the wondering what even worse is	but fearing something far worse is coming.
Still in store?

All the children…	Oh, my children and husband
All the giants…	Oh, the battles that are still happening…

No more.	The final “no more” is the thought that the Baker, our main character, will take no more of the destruction and his choice to return to the world that he doesn’t approve of… a world that has cost him dearly, to reconnect to those true friends/family and meet the challenges together. THIS is the lesson of Into the Woods. THIS is what I aspire to, but don’t always achieve. I’m grateful for those who stay with me in the trenches, who chose to love through the days I’m silent, who will laugh with me, cry with me and just be normal with me.

World Cancer Day: honoring the fighters, supporting the survivors, remembering the lost.

Living is complex for each of us. We carry hopes and dreams, disappointments and sorrow. We love, we laugh, we cry, we scream, and that’s how it should be. Do I wish the world was a better place? Yes, I do. Do I wish that sickness and pain were a thing of the past? Yes, I do.

Do I chose to pull into myself at times and escape? Yes, I do. Do I choose to step back into life, with all of the hurt? Yes, I do. I do because the causes are worth fighting. I do because my Rock and my children are my everything. I do because I love my little life. There may not be a solution for every problem, but there is always hope.

The Case of the Chronic Incurable Friendship

Since starting this blog I have had a few people ask me what it felt like to hear the words, “You have cancer.” It’s hard for me to describe, so let me share with you a quote from David Fajenbaum that perfectly describes that moment for me. He writes, “I knew the language the doctors use, the careful truth-telling, the hedging, the open endedness. I’ve spoken that language before. Now that it was directed at me, it didn’t feel nearly as careful or open ended as I’d once assumed. Instead, the words felt like they were casting me out of the room, out of the hospital entirely. I’d been consigned to the plane of possibility. Anything was possible because no one knew. I was on my own.” – Hope Wears Sneakers

I still live on that plane of possibility.

Honestly, I’ve just begun to realize that my life is a chronic condition. By that I mean that up until recently I was still in crisis mode. 15 years. It’s been exhausting. Whether it was never hearing the word “cured” or not being able to ring the bell at the end of treatments, the constant testing or if it’s part of the drug trial – whatever the reason it’s been quite the realization process. So, now that I’m aware of this chronic condition, what do I do? Wouldn’t it be great if there was such a thing as a chronic incurable friendship to go along with my chronic incurable life? People who would stick around no matter what – that they understand that each scan, new detailed lab work, every specialist appointment feels like (and is) life or death? People who would understand my dark humor and my need to spend time alone, and yet they stay.

Guess what?

I already have a few of those!

BONUS: they already knew that I am chronic with a hint of crisis. (I wonder if that should be my personality type? Hmmmmm….)

These people have helped create a new and special type of magic that combats the pain, both physical and mental, of living with chronic health conditions. You’ve already been introduced to my Core Four. Let me introduce you to one of my chronic friends, Amy W.

Amy and I met in Colorado and became instant friends – the type of friend that makes you feel like you’ve known them forever. Her classroom was right across the hall from my office and we shared just about everything that was going on in our lives. Amy and I have so much in common: we are both stubborn, hate to be a burden to anyone, self-sufficient, creative and full of compassion for the underdog. We both love all things theater, especially the artistic choices in set design, staging and character development. We could see a play together 100 times before we would run out of things to talk about or discover.

Amy is the first chronic friend that joined my crazy life who was not a part of my life while I was battling cancer. We met during the “post-cancer but my body continues to fall apart” phase of life. She understood me. She stayed.

I cannot tell you how healing that is to my soul.

Amy understood from day one that my life meme is the one that says, “I hate to cancel. I know we made plans to get together tonight, but that was two hours ago. I was younger then and full of hope.” Trust me, I did a lot of cancelling on her. Yet she still stayed.

Since those early days in Colorado, Amy and I have gone through a lot of heartache together. We both lost our jobs when the school downsized. We have both lost a parent to cancer. We both moved away from our beloved state, and we did not move to the same state. Yet, she still stayed and even comes to visit me. She doesn’t stress or become fearful when she doesn’t hear from me, because she still “gets it” – we don’t need to be together to be friends, because ours is a chronic incurable friendship. No matter how long we are apart, or go without texting or calling (well, calling doesn’t usually work because she also knows how much I hate to talk on the phone), we can pick right back up and carry on as though no time has passed.

We also share another thing in common, and how I wish it were not so. My Amy W has cancer. Those parts of me that she understood, she now understands what caused them because she’s experiencing them now. The fear, the hope, the planning (oh, there is so much planning involved when you receive a cancer diagnosis), the life-focus adjustments, the being strong for those around you when you don’t feel strong, the inner strength that comes roaring out when it is needed, navigating tests and procedures during a pandemic while the world is in chaos… so many things I wish we didn’t share.

The joy and comfort of having friends that are chronic and incurable are that no matter what – no matter what, they won’t leave. No difference of opinion, no level of heartache, no misunderstanding ever changes the friendship. It’s solid. It’s messy. It’s Lucy and Ethel laugh out loud funny. It’s comforting each other when there are no words. It’s speaking truth in love. It’s no matter what – no matter what, they don’t leave.

It’s an investment.

Oh, how I wish we each could move towards this type of friendship with those around us. Not every friendship is the same, but our approach in how we see each other could be the same. To see the person, not the affiliation.. the person, not the social status.. the person, not the social media post.. the person, not the snapshot of one moment in their life.

So many hours of my week are spent dealing with the chronic and incurable effects from my cancer treatment. It’s hard. It’s scary. It’s frustrating. However, the actual living of my life is pretty wonderful. What makes the difference? The human connection. The raw, real, honest and uncancellable frienships.

I guess I could say that the pain and heartache brought on by the chronic incurable conditions of my life are exceeded by the joy, hope and love brought on by the chronic incurable friendships in my life. I lead a blessed life and am so very grateful.

Aim from the Heart

“Just because you feel lost doesn’t mean you weren’t led.”
Lydia Stewart

It’s the end of March. The season of anniversaries has begun. Life has been… overwhelming for me in 2019. I’m happy. I enjoy my life and the people that are in my life. I’m thankful. I’m tired. I’m lost. I’m right where I’m supposed to be.

A few years ago Matthew was in the debut of “Chrysopolae” – an original play by Lydia Stewart. The story follows the construction of the Golden Gate Bridge and the dramatic telling of how it became one of the world’s most popular destinations for suicide, and how each life lost greatly impacted the lives of those left behind. Tragic. Heartbreaking. So many thoughts and ideas in this play struck me right in the heart, and continue to do so to this day. One of my favorite quotes from this show is, “Just because you feel lost doesn’t mean you weren’t led.”

So many times in life I have felt lost, but looking back I can see how I was led. So, every day I choose to remember that though my current path may seem… off/uncertain/disappointing/painful, etc. that doesn’t mean I need an escape. The choosing part is important. Remembering that I have the power to choose is important.

My anniversaries are big this year: 15 years since diagnosis of APL and 30 years of marriage to my best friend. The life lessons keep on coming. And while I have struggled to write them down, I did want to share the story of my first wedding anniversary after my diagnosis. It has it all: mystery, romance, laughter, tears… (it’s one of my favorite stories from those day).

Let’s set the stage:

The year: 2004

The location: a mall near Lake Orion, Michigan

Our cast: 1 adult male (tenor, handsome, supportive, romantic, husband to female lead, father to 2 children)

1 adult female (bald, scared, tired, just released from the hospital, awaiting more chemo, wife to male lead, mother to 2 children)

1 child female (11 years old, happy the family unit is back together, struggling to understand what happens next)

1 male child (8 years old, firmly holding the hand of the mother and frequently looking to the female child for confirmation that everything is ok now)

2 adults (supporting roles, store clerks #1 and #2)

It was a sunny afternoon and the family unit is headed to a mall for their first family outing since the mother was released from the hospital. It is one week until their 15th wedding anniversary. The father is on a mission as he has planned this outing without anyone knowing. The mother is nervous about being around people. The children are happy and scared at the same time. The family walks into the mall and the husband takes the family to the Tempur-Pedic Store. Store Clerk #1 comes forward to greet the husband and meet the rest of the family.

Store Clerk #1: Hello, Dennis! This must be your wife and children that you were telling me about. It’s good to meet you all. Let me show you the model that Dennis is looking at.

The store clerk takes the wife to a new model of an adjustble bed and begins to tell her about all of the features. The wife listens even though she is confused. The children show their excitement about the adjustable bed. The store clerk then tells the husband and wife the cost of this particular model. The husband is not at all surprised. The wife is overwhlemed.

Wife: Dennis, that’s way too much. We do not need a new bed and, frankly, I will most likely pass away before you could even have this bed paid for…

Husband: Honey, we do need a new bed. You’ve already had 10 bone marrow biopsies and will have so many more. Your back needs the best rest that we can get. Let me take care of you. I love you.

The wife tears up, overwhelmed by the unending loving and support she receives from her husband. The children are excited and are happy that their mom will have something to help her feel better. The husband makes all of the necessary arrangements with Store Clerk #1 and then hugs his wife and makes the kids more excited as they discuss all of the cool things that this bed can do.

The family leaves the Tempur-Pedic Store. The husband now leads the family to a jewlery store. Once again the wife is confused but goes with the flow. Store Clerk #2 greets the husband and meets the wife and children. Store Clerk #2 takes the family over to a display case to look at rings. The wife is already shaking her head…

Wife: Dennis, we are not getting a new ring. I love my wedding band and all it stands for…

Husband: Aimee’, it’s our 15th anniversary and I want to buy you an anniversary ring. We are in this together.

As the wife continues to shake her head, Store Clerk #2 wisely pulls out a ring with 3 marquise-cut diamonds. The children are smiling and saying how beautiful it is…

Store Clerk #2: This anniversary ring is quite special. The three diamonds represent the past, the present and the future.

The husband asks the wife to try on the ring. The wife, crying and aware of what a sight she must be, puts on the ring and can only utter two words…

Wife: It’s perfect.

The husband makes all of the necessary arrangements. The family exits the mall and heads home. The wife, to this day, holds this memory as one full of great love and reflects back on it every morning that she puts on her anniversary ring and every evening when she goes to sleep.

For the wife, this memory not only lasts but is played out fresh every new day – every tomorrow holds a promise of love and support until it becomes yesterday and then the whole circle of life starts up again. For you see, life is full of the past, the present and the future, and each hold an important place in each life. We may not have the same memories, the same present, or the same hopes and dreams for the future; but, we can all share the same truth of unconditional love and support.

Authors Note: Please do not diminish the important supporting roles of Store Clerk #1 and #2. Their kindness and compassion helped weave together this very important memory. Life, like art, is ever-dependent upon the role of the supporting players. Cory, Mathew, Allen, Suzanne and Sarah P, you are stars in my eyes and I am incredibly grateful for your friendship and support.

Dennis, Victoria and Matthew – YOU each inspire me every day. There are no words to express just how big a part you have played in my journey… the days where you were the reasons that I didn’t want to give up… the days that you made horrible days become days filled with laughter… the quiet days, the normal days, the hard days are all perfect because you were in them. I treasure you. I look forward to every future day that I have because you are in them. Thank you for helping me, encouraging me and giving me the greatest gift of all, the gift of your love.