Tag: writing

I Don’t Know About You, but I’m Feeling 22

This has been a monumental year on so many levels. Highs and lows. Dreams and Nightmares. Moments of hope and moments of despair.

I turned 22 this year. No, not actually 22 – I’m way older than that. But, this is my 22nd year since my oncologist gave me 3 days to make memories with my husband and children. Those 3 days were a gift and I treasure them every day. These 22 years have been filled with joy and sorrow, relief and fear, tests and results, feeling like I’ve let people down because of the rest my body now needs… Last year I was diagnosed with 2 autoimmune diseases. This year I had all of my remaining teeth removed (thank you, arsenic) and full implants put in; fell down a full flight of stairs and received a concussion, 3 broken ribs, and had one ER transfer me to another when the MRI showed neck fractures; and, well… it’s been a year! Actually it’s be and eventful 22 years of this life!

In these 22 years I’ve had the honor and privilege to watch my children grow into remarkable humans; spent lots of quality time with my parents and still lovingly grieve their absence; found a job I love; continue to try and live in the moment and not just rush through it all (that will always be a work in progress).

When I reflect on these 22 years, I think about what it was like for my Rock and I to grow old together in our mid-30’s. I aged from 36 to 90 in about a week. That’s right, my whole team of doctors (there were many!) said my body age was about 90 while we were in the deep throws of multiple chemotherapies, weekly bone marrow biopsies, and all of the treatments that continue to come and go in our life. My Rock and I, it is our life and I am so very blessed that he supports me through every step of it!

My parents took care of me when I came into this world, literally meeting my every need. I was dependent on them for everything needed to physically and mentally mature and begin the ever upward climb to becoming fully independent. I learned to sit up, crawl, walk, run, feed myself, make decisions, and ultimately turned into the adult that I was 22 years ago… 22 years… I feel every one of those years so keenly.

During my entry into the drug trial, upon walking into my room on the DNR (do not recitate) floor I was greeted with a stack of papers to sign. These papers agreed to the DNR, side effects of the chemotherapies we would be trying, risk of surgery to put in my duo-port, permission to have medical students be part of my team, etc. These papers were necessary to begin treatment. They were necessary for me to maybe survive. At 36 years of age I was actively dying.

I was actively dying.

Among these papers were also coloring books to give my children that would guide them through “My Mom Has Cancer” – I picked it up and set it aside. I just signed DNR orders and am was looking at a coloring book for my children. and I still have no words for what that moment felt like.

Once the papers were signed, the surgery was scheduled, and the chemo arrived I started losing all of the independence I had gained as a child. I couldn’t run, there was no energy for that, not to mention the risk of a brain bleed. I couldn’t walk without help, then I couldn’t stand up without help. I couldn’t eat and frankly couldn’t even think clearly. At 36 I was back to where I had started as an infant.

And I survived. It was… well, IS a hard fought war of moments.

We all come into this world helpless. Dependent. Needing to depend on others. We learn and grow. We form opinions. We judge. We speculate. We debate. We live and we (hopefully) learn. We age. We begin to lose some of our independence. We learn an entire new skillset that aging requires. We need people to depend upon. We come into this world and then, if we are lucky, leave this world in the same state of needing people. Yes, we live a whole lot of life in between. We form opinions, bias, find things we are passionate about, suffer loss, experience joy… So much life.

The beginning and the end both require us to need people.

Year 22 has been challenging, filled with joy and fear, and has given me a lovely case of emotional whiplash. Not joking here, just stating facts. I put on a brave face because, frankly, I don’t know how to do it any other way.

I need people every day.

We need people every day.

It’s time for less judgement, more conversation with active listening, more living…

It’s time we all try to feel 22 in the truest sense of the term! Love life, love others, be good humans and make this world the best place it can be for all of us.

So, here’s to the rest of my 22nd year! It’s going to be wonderful! I’m thankful for the humans that support me, encourage me, and just love me for the crazy, horror-loving, dog-obsessed human that I am.

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. ❤️