This week marks a day permanently circled on the calendar in my mind. Our life has been divided into three sections, before cancer, before surgery and after.
Hundreds of people dressed in blue and prayed all day as Joe’s body was torn apart and surgeons carefully removed every tumor. When I think back, I feel my chest tighten and all of the emotions and nerves come rushing over me once again.
I remember that 4 am alarm clock going off though I was already awake. I remember the silence in the room as we quietly got ready to head to the hospital. I remember the look on Joe’s face as he sat and waited. Were we making the right choice? What choice did we have? I think we both knew without knowing that our life would never be the same.
We knew the risks but blocked them out to head into what was the only option to save him. I fell into his mom’s arms after holding his hand as he was rolled back into the cold, sterile room. I remember the anticipation of every hour as we waited for the volunteer to call our name and a nurse update us on how things were going on the surgeon’s table.
We had hoped the surgery would give us time, maybe years without cancer. Instead we got a few short months before we were told the tumors had returned and we were heading back into chemo.
So many times as we’ve sat in the hospital watching Joe’s rising fever or as he’s stared at his body, so badly beaten– did we make the right choice? Should we have even done the surgery?
Doctors say we did, they say Joe wouldn’t be here if he hadn’t bravely done what he had to do to be here. The sacrifices he’s made to the quality of his daily life just to be with me, so much braver than any act of love I could ever give.
This has been the hardest and yet most fulfilling year of our life.
I know we’ve been smuggling time taking every avenue available whether it was chemotherapy, surgery, cancer fighting teas or the soursop fruit his mom scoured the markets for in hopes to find the cure. We’ve done it all. Tried every choice we’ve had and finally we’ve decided it’s time to choose life.
Quality vs. Quanity. It’s something we’ve brought up so many times and we’ve both always chosen quality. I’ve promised Joe I will do everything in my power to give him some quality of life, to keep him from whatever pain I can and I will not let him suffer.
There are no more treatments. There are no more surgeries.
We’ve transferred our care to hospice and let me tell you it’s not as scary as it seems. A nurse is at the house every day to make sure he’s as cozy as he can be with the pain pump purring at his side and the tranquility candle flickering on his table. We’ve had some really really good days. We made it out to take family pictures along Disney’s Boardwalk, precious pictures of Joe and his mom. I could see the pain on her face as Joe wrapped his thin arms around her neck and hugged her for the camera. It was just as beautiful as it was heart breaking.
We made it to the bar to watch the Bears game. Joe slings the pain pump over his shoulder and his fist in the air as he sang the fight song along with the littlest fan who watched her daddy full of excitement.
Some friends chipped in to buy Joe a new recliner and I’ve transformed our dining room into the “relaxation room”. It gives Joe a place to snooze and still visit with his little girl. A baby with gray eyes comes to pound on his feet a few times a day just to say hello.
The end of treatment doesn’t mean you’re giving up the fight, it means you’re holding your destiny in your hands and choosing to spend your time, your life the best way you can. Joe is choosing life right now and I’m shocked to see how happy it makes me though I know our time is limited. There’s a certain peace over our house as we truly sink into the good moments.
The bad moments are really really bad and I try and hide them just as fast as they creep up. Joe is scared the end will be grueling and the days will be long. I told him not to be like his wife who is taken on a date on Friday night and by Wednesday is complaining how we never do anything. He smiled and rolled his eyes and we both agreed the good days have been really really good.
I can’t imagine life without him though my mind wanders off in that direction as I turn out the lights. I don’t want to go there until I have to. I just want to make it to my brother’s wedding this weekend and dance with my husband like it’s the last time because it very well could be. I want to make it to Halloween so we can dress up in the ridiculous family owl costumes I have for us.
We are choosing life and I want it so bad to keep stretching as far as it possibly can.
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Continuing to keep you in my heart.
Your always in my heart, thoughts and prayers. Love you all!
Your family is in my prayers every night. Stay strong.
God bless your time together. Your story is truly a beautiful love story. And love of its truest for can never die.
You are so brave…prayers to you. You are an inspiration to all of us. Life is precious and things no longer matter. Quality supercedes quantity.
May God bless you in this journey. Your blog is helping you, but truly inspiring me. May you feel the power of prayers.
Keep fighting!
Our God is a good God. He doesn’t put the illness on us, he takes it away. Maybe not always by our desires, but by his design. God loves you and Joe and he has not deserted you by any means. Joe is in God’s hands and so are you and sweet baby girl. He will comfort you and your families as you face the future. My prayers are with you dear Amanda. You are doing everything right and be proud of yourself and know we all are proud of you and the strength that God is giving you as you go forward.
I carry you guys in my heart and in my thoughts
You both amazing. Mira is so lucky to have such incredible role models in her life. You are in my prayers.
Your continued strngth, amazes me, I hardly know what words to write here as I read your latest post. But I believe that this choice, to choose LIFE and LIVE it to the fullest capabilities right now, is the right choice 🙂 Just know we are all still praying, and hoping for that miracle, and never forget, miracles do happen. But for now enjoy each day to it’s fullest and know you are never far from our thoughts, and our prayers, God Bless you and your family….. XX <3
Amanda my heart breaks for you! You both are amazing strong people! I will pray for peace and strength in the coming months. I hope your time together is filled with love, laughter, and great memories. Enjoy every second!
Prayers for all.
May God wrap his arms around the 3 of you and give you the courage and love to enjoy every moment. None of us know when it may be our last. Peace.
I think about you all daily, as I’m sure many of your followers do. My heart aches for you. I wipe tears at every post. Your strength, which I don’t think you realize just how strong you are is truly inspirational. As I’ve said before, I don’t want to be in your place and I’m sorry… sorry that cancer hits the best of people. Sorry that you have to make the choices you are. I’m glad you are living in the moment and are enjoying some really good days. I pray you get your wishes and I pray for every moment of your journey.
Prayers through tears…love you all!!! <3
May peace fill your spirit in the remaining time that you and Joe and Mira share. I want to thank you for sharing this most awful, joyous and heart-breaking journey with us. God be with you.
No words. <3
Precious, precious. I hope you can feel the love and support that is sent your way. I am so proud of your young family. Thank you for this beautiful post. You are showing real-life grace.
My heart breaks for you, each day our miracle is not answered. I wish things were better. Your amazing love for each other will help you to live the rest of the time Joe has. I will continue to pray and wish for that miracle. My heart truly breaks for you. I admire the strenghth and love you have for each other. I am praying Joe and you can have that dance. Love you anne
Very well put… I think we all are praying for a miracle. They happen, I hope this time is one of them. I am praying you get to have that dance Amanda. God Bless you and your family. Don’t waste a minute of time. <3 <3 <3
My prayers for all of you begin my morning.
May God keep his arms wrapped around you providing strength and peace.
Please contact Dr Majors
Your precious family is in my thoughts and prayers!
I will continue to prey for you and your family. My heart aches for you all. Keep fighting and enjoy ever second you can.
Bless you and your family.
As a hospice nurse I feel your pain but envy your strength. Keep up the hard work and remember your hospice team if not already there are a phone call away. If you need to make a call, don’t say I’m so sorry to bother you. It’s not and you’re not a bother. We do what we do because we live our patients, their families and our vocation.
Amanda you have shown so many people what true love is all about, even with all you are going through you shown Joe some much love and that is what life is all about. Joe has accomplish in so little time he is a roll model for all, my prayers go out to you and your daughter and the family