It’s human nature to want answers, to demand a timeline and to know how things end.
We watch movies, read books, finish work. We wrap up and move on to the next thing.
Hanging in a state of limbo is not agreeable to our basic psyche. Yet, the balancing act becomes everyday to people impacted by sickness.
Last week was the first time Joe has been in the hospital since we had the baby. We started off full steam ahead, aware that we were admitting ourselves in search of pain relief. We packed up hospital gear; phone charges, Joe’s toiletries and comfy jackets and headed into the hospital with the patience you need with the process that is the medical world. Vitals are taken, tests are run and nurses change shifts. Questionable meals are delivered, lights are turned on at all hours and the wait to get out begins.
The week got harder as the days ticked on. An overnight stay for grandma with the baby so I could sleep at the hospital. Babysitters split shifts to cover the time while I was away or kept the baby entertained so I could try and nap.
The physical drain of the drive to the hospital and sleeping on a cot took it’s toll as well as the emotional ups and downs of the news that comes with cancer.
“The cancer has progressed,” said one doctor.
“The lesions are on the spine”, said another.
“The pain is scar tissue,” said the radiologist.
“The tumors aren’t pushing on the spine, so that’s good news”, smiled another doctor.
The words don’t scare me anymore, instead I just want someone to make him feel better. I’ll take 6 weeks of feeling good vs. 6 months of this awful monotony he’s been stuck in—just make him feel better.
As I drove to the hospital Friday, I knew I hit my wall. I cried and cried and cried as I listed to the radio. A week of Joe in the hospital made the future seem too real. I slept alone in our house for the first time. I couldn’t roll over and ask him to change a diaper while I made a bottle. I pulled the metal bat out from Joe’s side of the bed and tucked it next to me as I was convinced every time the cat ran down the stairs I was about to be attacked by a ghost or a bad guy.
I sent a dramatic text to a friend in Atalanta. A nurse who speaks the lingo and lives for spontaneity. “What’s your work schedule? Can you come here?I’m falling apart. ” We booked a flight and she threw some clothes in a suitcase and was on her way.
By the time I arrived at the hospital, I had pulled myself together to walk into Joe’s room.
“Natalie is on the way,” I said, “She’s on a plane that leaves in an hour and she’s going to help me with the baby and house stuff until you get home.”
Joe shook his head, “Are you kidding me?” I was prepared for him to tell me I’m crazy but he said, “You’re always one step ahead of me.”
“I just called Lauren and she’s on a plane from Chicago tomorrow.”
So there we were. It was so ‘Joe and Amanda’. We both knew when the other one was getting close to a breakdown and clearly Joe could see through my brave face.
We went from bouncing the baby between Joe’s mom and myself to 4 more hands in 12 hours.
Our Mary Poppins had arrived and nearly peeled me off the floor. My baby was bathed, lunch was made and my friends were folding my husband’s underwear.
Joe was surprisingly allowed home from the hospital the next day and he headed straight to the salon for a haircut. It still makes me laugh.
I think this confused people, how did he go from the hospital to smiling in a picture? How did it go from a breakdown on Friday to a table of friends eating dinner on Saturday night? I wish I had an answer for you but this is just how cancer goes.
Joe apologized to our friends he called in a moment of desperation because it seemed things had settled down by the next day but they definitely got a look at what our daily lives look like. Joe may be up for breakfast then in bed the rest of the day. It’s hard to make plans because you don’t know just what you’ll be able to do.
You need to understand that our story could stretch out to a point that you simply no longer wish to read about it. It might not be the tightly written finale you hope for. This pain and sadness could drag on and in some ways, that’s what we hope for. Yet, we hope for more good days than bad.
But our weeks get messy. We might need help one day and then the next day make it to a movie. This is uncharted territory and when people ask me how they can help, I may not have an answer. All I can say is, please don’t stop asking.
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Stay strong it may be hard but the three of you inspire me.
Thinking of you guys!
Don’t stop asking. For those who love you and Joe, they will do ANYTHING. I wish you and your family the best any day can bring.
Praying for strength for you and your family #joestrong.
Or maybe it should be #joeisstillstrong.
Praying for lots of days of multiple babysitters, lots of people for dinner and many movie nights…..enjoy Amanda!
As always I am in tears at reading your latest entry… I am praying for all of you Amanda as I have been for months, sending prayers for many more GOOD days, time spent with friends, and family, LESS pain, and the strength to face whatever life is about to throw at you! And a BIG catcher’s mitt to handle all the curve balls. Hugs, prayers, strength, all of these are my wish for you, Joe, and Mira XX <3
Amanda, you are the one the strongest women I know. I pray for your family daily.
You are doing a great Amanda. Yes always ask for hemwhen you need it, we may not all be able to help I. The same ways but we all want to help we love you guys. Yes I want this blog to go on forever, but I do wish Joe more good days and not bad. As always we pray for you, and to give you many days of special ordinary memories xo
#Joestrong
<3 <3
I love reading your blog. It takes me back to my own journey through colon cancer. You are a talented writer, Amanda. I think you should write a book. I know I would buy it.
Still praying for all 3 of you…
#joe+amandastrong
Praying you are continuing to have the love and comfort of friends…. And praying for Joe’s strength on a daily basis. You are SO loved. ❤️❤️❤️ xoxo
Amanda, as always I find myself so sad but so inspired by your courage. I can’t imagine the life you are all going through. I’m so glad you have the support, glad people are still asking for help, glad you are asking for help. They say it takes a village to raise a kid but what they don’t tell us is when someone gets diagnosed with cancer, it affects everyone around. Although we don’t have the words, we can’t pick up the pieces, we can pray and do our best to help you find the positives in this crazy thing we call life. I pray for your family every chance I get.
I wish I could come help…..and know that I would. I’d love a few days of hair bows and hearts. You are on our hearts and minds always