September 15, 2014
Would you want to circle the day on your calendar? The day you were going to die?
Would you hold the people you love close and count down the days? Or would you push your loved ones away knowing how much you have to lose?
Would you want it to end quickly or have time to get your affairs in order?
Would you want to know if you only had so long to live?
On our search for answers we’ve been given different timelines whether we really wanted them or not.
A recent visit with a doctor who told us he was honored to meet us sent chills down my spine. In his 25 years working with cancer patients, he’d never met someone like Joe diagnosed with his type of colon cancer who has lived as long as he has. Most patients barely make it a year with your type of signet ring cell cancer.
This was one prediction we’d never heard before and I saw the tears fill Joe’s eyes.
“No one has ever said that to me,” Joe told the doctor, “I guess I didn’t know how dyer the original diagnosis was.”
“Would you have wanted to know?” our doctor asked.
Probably not.
It was 3 years ago to the day that I first drove Joe to the ER to find out what was causing his stomach pain. I can’t believe this has been our life for 3 years. I can’t believe we’ve made it so far on one hand and lost so much on the other. When we were first told it was cancer this naieve 28 year old had no idea what was in store.
Yet, here we sit 3 years later and 3 days before Joe’s 31st birthday, back in the hospital, but still kicking.
We are approaching the end of the road. We are back in the hospital in my hometown. There aren’t many options left but to keep Joe’s pain under control and his mind at ease. He struggles to be around the baby when his stomach is in knots and his patience is wearing thin with what this thing called life has left him with. This was never the plan. We are suppose to have more time to do our research and make good decisions.
Is it time? Are we there? Words like hospice, end of life care and “do not resuscitate” twist my heart and ring in my ears.
Are we really there?
How long will it take? Will it hurt? Will he make to my brother’s wedding in 3 weeks? Can he travel home? Do we stay at my parents? I’m angry. I’m not ready.
I’m mad at Joe, “Get up!” I want to yell at him as he lays in bed, “Get up, let’s go home, let’s get back to our life!” I’m not ready to lose you.
I hate everyone. Everyone who tries to comfort me or hold me close. I want to scream. I drove to the church but couldn’t go in. I sat in the car and stared into the tiny windows and assumed God could hear me.
“I’m not ready, I’m not ready, I’m not ready.”I sobbed.
My heart is split in two as I worry about my 9 month old daughter feeling abandoned by her mother as I sit in the hospital with her daddy.
I need more time. I wish I knew what we should do. I want to go home but don’t know if Joe will ever be strong enough to get on an airplane. I want to go home but know we need help. The reality of all of this is too big to swallow.
“Live in the now,” Joe told me as I stressed over plans and arrangements.
“You’re missing the time we have,” he went on.
My heart wants to be here, be still, be brave. But my mind wants to know when. Maybe if I know, then it won’t hurt so bad. Maybe I can hide from all of this, if I only know when to run.
I want to mourn, cry, beg for advice but the only person I care to listen to is the one who will leave me.
Would You Want to Know When You’re Going to Die?
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Your posts are so deep and gut wrenching. I feel sick thinking that this could be anyone who I love and I just can’t imagine. I don’t think I could be as strong as you are and hold it all together. I think about you often and I don’t even know you. Please know that you have touched so many lives and have encouraged so many people to step back and appreciate life.
Dr. Majors Romeoville IL, NEVER give up. Call him. Stage 4 cancer survivor, will be able to share information the western medical system does not share. I wont give up on trying to help you all. Be blessed.
I have no idea who Doug is, but agree with contacting Dr Majors. I used to work for him and he is a huge mentor of mine. He was given weeks to live and is alive and stronger than ever 4 years later. Get in contact with me (I found your blog through Michelle Sanderson), and I will be sure he talks to you guys as soon as possible.
Keep praying. Pray for strength. Pray for faith. Pray for the doctors. Pray. Know that we are all praying for you all, too.
No words for how I feel reading this. Chills ran from my spine to my head. Your both amazing People. PRAYERS.
I know what your going through, I will pray for you both..
Amanda, I wish there were words of comfort or some new treatment I could tell you about so you could rush Joe there. Sadly, there is not. I guess my only comfort would be in knowing that Jesus did know the day and time and place and way of His death. He willingly went there because His love for us was so much bigger than what He was to endure. He understands pain, agony, sorrow, brokenness. You are not alone. Still, even though I met you only for a minute at Fox and the Hound, your story has touched me deeply and I grieve with you and your family. Take whatever comfort you can in knowing you and Joe have touched many, many lives, and you are in all of our prayers. Take comfort in that as well, you are not alone. We were never promised an easy life, or a carefree or pain free life, all we were promised is that we would not have to go it alone. Praying you can find peace in His assurances. Blessings and love to you.
I am so sorry that all of you are going through this! I am so angry and so want Joe to be “the miracle”, I wish I had the power to give you the time you deserve. Thinking of all of you.
I will keep you all in my thoughts in prayers! May God give you the strength, guidance, and comfort you need at this time!
Oh Amanda! My heart aches for you and Joe! For the pain Joe has to endure and for you, the sheer terror you must feel every minute of every day! There are so many praying, lifting you up! I know that may not be enough to have a different outcome but hopefully it gives you both some small amount of comfort! You and Joe’s words on this blog have reached out and touched and helped so many; even those who are not sick with the awful Cancer!!!! And don’t for one minute think you aren’t strong or brave because my dear YOU ARE and so is Joe! Love him ,be with him, and do whatever you want to do and can do! And do not worry about that precious baby girl who looks just like her daddy! She does not feel abandoned by you or Joe! Kids are resilient ! We worry, worry , worry and in the end find out they are JUST FINE! And we were just worrying for nothing! So have peace in your heart about that! Find something for you and Joe to smile about, laugh about every day! And hold hands and kiss him! Just be there! Prayers and hugs to you and your sweet family!
I continue to pray each morning for both of you…that us how I begin my day. May God bless you with strength, courage and peace.
I pray for you, Joe and the rest of your wonderful family and friends that have formed your support group. I too am an “unexpected” Cancer patient with a very rare type that I fit none of the stereotypes. I know what you mean about wondering if you want to know that date.I don’t know the date YET. But I did know the date when I disconnected my Mom from her life support after being her caretaker since I was a teenager. It allowed me to do those things you mention, call the funeral home, etc All I could concentrate on was not allowing my Mom to suffer any longer an d to know she would be healed and watching over me. It was not easy, she was my best friend and the only and best Mom ever just as Joe is your best friend and I am sure the best hubby ever! You are strong and have faith you will remain so.
After it all happened I mourned my “patient” not my Mom. It took about 6 months for me to realize I no longer had to hurry home to administer meds, etc. You will go through that as well, I am sure. Then it set in I had lost my Mom and that is when the real mourning took place. I will continue to pray for your strength to endure so much more than seems possible.
I don’t know what else to say except I am so sorry… I’m inspired by both of you.
My heart and prayers go out to you. Nothing can still the pain and anguish you are going through. It is a minute to minute process, I found that constantly praying to God helped me to get through the final days. God Bess and keep you.
My heart aches for you. Sending thoughts & prayers from Akron, Ohio.
I’m so sad to read your recent post. My heart just breaks for all you are having to deal with. It has to be the most emotional and stressful time. I wish I could take away all of your pain and gave Joe sit up and say how much better he feels, but if can’t. I can only offer you prayer and compassion. I promise to pray for all of you.
Amanda, I don’t know you, but I have followed your story through friends. I have been where you are now and I pray for you and your family. I hope they find a miracle for you and your husband. My advice is to try and enjoy every minute with your husband and make whatever memories you can. Remember the good times and forget the bad ones. Prayers to you for strength and the courage to go on.
So sad. As I read this my eyes too well up with tears. Reminds me of 4 years ago when i lost my dad. The waiting for the hardest day ever hurts the most. Only God knows.♡ prayers to you and the family in these trying times
Your love is soooo powerful!
I have no words… but am here to say that I am here. Wishing things were different, praying for you, and just… here. Love and prayers with you.
I know this feeling and it is awful. Unfuckingbelievably awful. Sending you light and love.
I just have no words to say that could help you and Joe…just know that I pray for you both and the baby.
Amanda, I know all to well the pain Joe endures in his stomach everyday having to endure it myself. I hurt for you both and pray for each of you. Not knowing is so difficult. I agree with Joe, live now, don’t worry about tomorrow. But who am I to suggest anything. You spoke about how the only one you care to listen to is the one who will leave you, that person is telling you to live in the now. When you want to cry, cry, when you want to scream, scream, you have all the right to do as you feel. May God be with you, Joe and your family.
I cry tears for you and Joe, and I don’t know you either. Joe is just too young to be going thru this and you are TOO young to be a widow. I feel so bad for what you, Joe, and family have had to endure these past 3 years. I am sure you will make the most of the time you have together. You are in my thoughts and prayers.
I don’t know you, but I am inspired by your fortitude and strength. I promise to pray for you, and wish I could do more.
My heart breaks for you. There are no words anyone can say, no answers…. No reason for this to be happening to such good people. Joe is incredibly strong. You are too. Thinking of you everyday.
If I feel terrified while reading your post, how must you feel writing it and living it? I am so sad and I have never met either of you but feel as if we are family.
Continuing to pray for a miracle, for less pain, for grace and peace for all of you.
Dear Amanda, Joe will know when it is time for him to let go. He would want to leave you with the peace that you were there, right by his side, through sickness and in health. You have the right to have all the feelings you are having. Joe would want you to be so very proud of yourself, that you loved him enough to let him go when it is time. Maybe tonight, maybe tomorrow, maybe next month, next year.
No one knows when the Lord will call us home. You are a wonderful wife, mother, friend, and the most wonderful person in the world to Joe. Please know we are all praying for you and your family, that when the time does come, that you and Joe have peace knowing you had that love that a lot of people never experience. And your Baby Girl will always know how much love her parents shared. Now that’s a blessing.
I am so sorry for you having to go through this. I went through it and felt like you – I wanted to say get up and fight when my husband had no fight left. I pray for a miracle for Joe! I pray for your continued strength.
I wish I could help you; that I had a magic wand and could make all the bad go away. All I can do is continue to pray for your family. Love your sweet Joe with an open heart while you still have the time. Everything else will take care of itself. Take care of you and him.
Thoughts and prayers for all of you!!! Please know that we pray for you all daily. Joe is blessed to have such an amazing wife at his side! I enjoyed seeing you yesterday and adore the beautiful stance you take in such trying times even though you lied to me. 🙂 Please know that i knew that you were lying and that you didnt care about Jackson’s hair!!! I love that you tried! Mira certainly has quite the role model in you and she is also blessed to have you as a mother. God bless you all! Love The Street Family
I can only say, I was there once. Love you man.
Amanda and Joe-
There is one who will not leave you or forsake you. Call on Him. Jesus is the great comforter, the prince of peace. Cry out to Him with your fears, your pain, your anger and your sadness. He WILL bring you peace.
My heart aches so deeply for you! But I trust in The Lord, and I pray that he will use this terrible trial to draw you close to him and to reach many. He can bring good from all situations, and hope when all hope is lost. His plans are eternal, and he longs to hold you in his arms and love you as your father. Run to Him.
As I read your blog, there is one song that constantly fills my mind. The lyrics have helped me understand difficult and painful trials in my life and those around me. I hope that it helps you too. Blessings by Laura Story. http://m.youtube.com/watch?v=1CSVqHcdhXQ
Tonight I pray that the Holy Spirit will wash over you and fill you with a great peace, so that you may be still and be in this moment.
Life is so very,very short,,,enjoy each moment of time you have for they will become the memories you will cherish down the road. Sending prayers for your comfort and healing…and a miracle <3
He’s right. You are wasting it. You’re concentrating on the death and instead, you should be embracing the life. A lesson I learned well when taking care of my Mother, who died of cancer in 2000. I don’t regret how I reacted to it….it taught me a major lesson. The problem with everyone knowing you have cancer, is they start treating you like you’re dying. They never look, speak or treat you the same. They’re always sad, crying. If God said: Hey, you can go back in time…..I’d go back to the beginning, when it all started and I would be more positive, I would treat her the same as I always had…..excited to see her and always greet her with a smile. I would take her to go do fun things with me more often. I wouldn’t let her thoughts fill with negativity….I would give her awesome memories to fill her mind with….and I would wait for her to bring it up, if she wanted to talk. I wouldn’t make her feel like she was dying everyday. We, as a society, should be more loving and understanding with our loved ones that are ill. ….but, we are conditioned by the media, movies, soap operas, etc. on how one should act at ones bedside. I had to ask myself….if it was me….would I want my last vision to be the love of my life crying and sad….or them smiling down on me, with love in their eyes and the feel of their warm embrace? I’m sending all my love to the both of you. Cherish every moment you have….and don’t concentrate on the end date….live in the moment.
Loving so hard it hurts is such a life blessing but undoubtedly heart wrenching at the same time. We love your beautiful little family and keep thinking of you often. I’m not sure any words can ever console your situation but to watch your love unfold for one another and your daughter is something to cherish always and reminds every soul you touch what’s important in life. Love Jake & Becky
My thoughts and prayers are with you and your family Amanda! I am a hospice nurse in Alliston, Ontario. I find it an honor and a privilege to help the resident’s and their families through their difficult journey. There may come a time when the caregiver perhaps should be the nurse or support worker instead of the wife, mother, sister etc.. How beautiful is it to just love Joe and hold him and share your thoughts, and stories in those last few days, instead of worrying about all that medical caregiver stuff. It sometimes takes away from living until Joe’s journey on this earth ends. When you say you are not ready , I’m not sure if anyone ever is, however there may come a time when Joe will let you know that he is ready. Every family and situation, for sure, is different however I thought it important to share my thoughts with you. Although I have not had the pleasure of meeting you, Joe and your families please know that I truly am sad for you and your family and of course Joe. I am sending much love and prayers!
Love Mary
No words.
I don’t have the words I want…I want to tell you something that will bring you, and Joe and that gorgeous baby of yours, strength and peace and courage and everything else.
I’m feeling lost and angry and helpless, which I know are only tiny fractions of the emotions you’re feeling. Please know that you’re all in my hearts and thoughts, and I will continue to think of all of you no matter what the future brings.
I saw this post via Lindsay Brach. I cried as I read it because I have had the SAME exact thoughts and feelings as I went through it a few years ago. I know there is nothing to say that will make you feel better or for the pain to go away, but I will say this, I UNDERSTAND! You are stronger and braver than you think! Enjoy the moments even when you don’t want to. Don’t think, just BE. I am praying for all of you and sending big hugs!
Be mad at me.
Seriously.
Because, I don’t know what you’re going through. I pray I never will.
I’m healthy, and probably don’t deserve to be. We are both proof that life isn’t fair, but for different reasons.
So, the next time you’re feeling overwhelmed, and angry, take it out on me.
Just don’t be mad at Joe.
Because, just like you need him for the rest of your life, he needs you for the rest of his.
I’m so sorry. I’ve been reading along but sometimes it hits too close to home and I just stop. Let me say though that no matter what you do or how you look at it – it’s an impossible situation. And that you are not alone since this is a road that (sadly) many cancer patients have been down. Some have a happy ending and some simply have an ending. It all takes a toll though. Your ability to bring attention to the experience in a warm, hopeful, and at times, funny way not only lightens people spirits but it makes them more aware. For that you will never understand the ripple affect this blog has had and the good you all have done by being so open.
When you asked will if he passes will it hurt – the answer is yes for you and not him. It will hurt because we live in an achingly beautiful world, filled with people we love, the ability to try new things, learn new ideas, the ability to grow even as all of us (technically) die a little each day. I won’t tell you about glass half full or where to look, to figure out how you should feel. I can only say that you will “touch the bottom of the pool” at some point (maybe it’s now) it will shake you and shape you in the most fundamental of ways. But just like all things, once you touch bottom, the only direction left is UP.
You’ll resurface and struggle but keep it together for your family. You will also feel guilt about surviving or laughing again. It’s all normal. It’s all right … it will be alright. Just be strong and grateful. The only place I think people who have “touched bottom” find solace/peace is with gratitude. Hospice workers will hold you together as a human being when everything seems to be spilling from your hands all at once. They are trained to do it – but they are able to only by the grace of their own faith (whatever that may be) and their ability to be grateful.Lean on them. Lean on everyone. You have a whole community or readers here ready to buoy you back up if need be or to help you celebrate a remission!
I don’t know much but the only thing I’m certain of is that no time is promised. No experiences are promised. And sadly life is not fair. But if you hold on, fight as hard as you can, love as much as you can and allow your self to feel everything even if it’s bad scary, sad, or funny; you will be alright. Just lean on others to help you with heavy lifting. And keep in mind that I have no idea what can happen tomorrow – hope can go a long way in healing. It seems like the doctor is echoing that sentiment. Never lose it …. your hope. I will keep you all in my thoughts. Below is a favorite poem of mine. My mom gave me the book when I was a child. It has always helped me to find an emotional “true north” when I felt like I was spinning.
Just take it one step at a time … one breath at a time. And know the world is rooting for you all.
On Joy & Sorrow
Then a woman said, “Speak to us of Joy and Sorrow.”
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that hold your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.
Amanda, I wish I knew the words to say to you. You are blatantly honest and share your deepest of personal thoughts with all of us strangers, friends and family. Be mad at the world, be mad at everyone around you… but don’t be mad at Joe. Embrace every last stinking second you have with him whether he’s in pain, sleeping or he’s able to be that GQ model on the outside. Hug him, kiss him, cry on him but don’t leave his side for a second. He needs you… and you need him.
I don’t know what you are going through… I can’t imagine and I’m sorry, I don’t want to.
I’m sorry… I’m sorry for you, sorry for Joe, sorry for your daughter and the rest of your family. Cancer FUCKING sucks. It does. Every letter, every diagnosis, every “rare” form. It sucks.
Daily I lift you all in prayer. Each time I read a new post, I long for positive news and cry during each post no matter what you type.
I wish I had more to say than “I’m sorry for what you are going through.” This is what I had to tell a friend of mine just two weeks ago as we lost her fiance and my friend to liver cancer.
I was sent the link to your page from a fellow Bears fan that wanted us to keep your family in our prayers and I feel like it was for a reason. I sympathize with your statements of not being ready. I harbor the anger of ‘why him?’ I know it is not much that any of us reading can do but we are all praying for you and your family.
It’s ok to hate the world. I don’t like anybody either. Your husband, your daughter & you all deserved so much more. You have every right to be angry & pissed. Hang in there lady; one day at a time. My wife has been fighting stage 3 Breast Cancer for almost 2 years that has spread to her sternum & both lungs.