Dad is maybe not doing well. I know I wrote “It Is Well” a couple of weeks ago but even then I was trying to talk myself into it. I am writing this today not so much to inform but to share where I am.
What does it mean to “fight” cancer? I wish there was something I could do directly to the tumor and to the root cause of the tumor. I mean, if I could just have her leg amputated below the knee I would. But that doesn’t work. That won’t fix it. That won’t make it go away.
So she has to have chemo.
And chemo makes her feel bad.
I don’t want to write another weepy post where I cry to the whole world about my daughter. Let’s talk about having fun in the pediatric oncology ward. Because that’s my fight. That’s where I can make a real difference. I can help my daughter feel better. So we try to have fun. In the hospital.
Sometimes by holding straws under our noses.
And that’s what my job in the hospital is. I bring the fun. A new favorite joke is this:
Two goldfish are in a tank and one says to the other, “Do you know how to drive this thing?”
Hilarious. When I told her that joke she rolled her eyes and laughed but she laughed. Prior to that she was feeling tired and maybe a little cranky. She didn’t want to read or be read to. She didn’t want to play video games. She didn’t want to eat. She just wanted to sit there quietly.
Now I’m all for children sitting quietly under normal conditions. But not now. Now we have to fight.
We have to fight to keep her spirits up and I am ready to fight.
But the battle is not focused entirely on my daughter. All of us are struggling.
Julie didn’t sleep last night. She cried. All night.
I can cheer my youngest up with a blue wig and some lame jokes but what do I do for Julie?
What do I do for my oldest boy who has become somewhat brooding and had a small meltdown yesterday?
What about me?
Someone at church asked penetrating questions about each family member ultimately landing on me. “How is dad doing?”
I guess I hadn’t thought about it.
I am in pain and physically exhausted and have a short fuse. My daughter has cancer. My wife isn’t sleeping. My boy is angry. The sink is full of dirty dishes.
But I can’t allow myself to focus on the bad stuff. My daughter’s cancer is localized. We caught it early. I held Julie close, told her I loved her and rubbed her neck, back and feet with lavender and she is resting now as I type. I treasure every moment with her, crying or otherwise. My son is becoming a man…and struggling with that emergence. It is a privilege to help guide him through it. Dirty dishes are a fact of life.
We practice taking deep breaths. We slow down. We laugh. We cry. We wash dishes.
We tell jokes during chemotherapy.
This is how we are learning to fight.
How is dad doing? I am hurting but I know I am loved. We have been blown away by the support we have received from our church, our community and my co-workers.
I am not an island.
I am actually surprisingly weak.
But we are able to fight this together. And it helps to have a few laughs along the way. Naps help too.
You are not alone.
You are on the right track with humor. Get a copy of “Anatomy of an Illness” by Norman Cousins (many editions/reprints – should be cheap). Short version = laughter bolsters the immune system and relieves stress. Could help all of you but especially the daughter. The worst is feeling there is nothing you can do but endure – creating ways to laugh lets all of you be proactive and more in control. Esp get a copy for daughter to read and/or read best parts out loud to her. Cousins watched movies that made him laugh out loud. For friends that want to help you ask them to find books on humor/jokes at library for you or suggest funny movies. ANYTHING that can make any of you laugh is fair game. Laughter won’t cure cancer but it can sure help you survive it – and that is a scientific fact.
Check out http://www.cancercenter.com/treatments/laughter-therapy/
Work laughter into your everyday life, multiple times a day, in order to get the most impact. Find the things that tickle HER funny bone because everyone is a little different. Don’t hesitate to repeat the same book or movie if it is especially funny.
A Fish Named Wanda; Monty Python; Ghostbusters; Caddyshack; Groundhog Day; Ferris Bueller; Wayne’s World; Galaxy Quest: Uncle Buck; and any cartoons.
Get a book of jokes and read them out loud, there will be lots of duds. Try to rewrite the bad ones better = a great exercise in distraction.
What happened to the frog who had a flat tire? He was towed.
And I am in favor of paper plates when necessary. Praying.
What did the duck say when she bought some lipstick?
Put it on my bill.
Jesus will be glorified in your suffering
You’re in it for the long haul, and I think you’re doing a great job propping everyone up. Don’t be afraid to ask someone, us your loyal readers and friends, or your family to prop you up once in a while.
There are no adequate words of course. Blessings and peace on you all.
First off, you are all in my thoughts and prayers. I would like to share some of the things I found out during my late husband’s journey through brain cancer. Caregivers and families need to take care of themselves too, they are collectively and separately going through a crisis and traumatized. Situational depression is common and appropriate medications really help. We used disposable plates, cups, and utensils when we were overwhelmed. People want to help, if you have a board or a notebook, or a jar with requests you would like to be fulfilled it will be easier for you to make a request when someone offers. I will describe a couple of items I found highly useful. An artist’s portfolio with backing board in it is great for transporting X-Rays and MRI’s (the physicians preferred for me to transport them). More importantly I had a system for tracking all medical visits. I used a 3 ring binder I could zip shut. In it I placed 2 plastic pencil pouches – one for writing implements & cash for vending machines and one for prescriptions. I obtained some of the vinyl holders for business cards and got multiple copies of every physician’s cards which I distributed to the all physicians so they got accurate phone numbers – many of these ended up stapled to patient charts. I had blank notebook paper. I took detailed notes for each physician visit with physician’s name, specialty , and date at the top of the page starting a new page for each visit. Prior to the visit if I had questions I would write them on the visit page (this also helped when a friend had to take him to the Dr. I imagine this would be good if only one parent could be there. Sometimes, I also recorded visits but I will confess I did not spend much time listening to them so I quit. In our case, we also needed for me to have power of attorney and durable medical power of attorney so multiple notarized copies of these were placed in in page protectors. I kept updated pages with current medications, doses – all the stuff on the label, and clearly marked the old medication pages as having been updated. I placed the binder in a visually distinct backpack that was used only for Dr. visits and I added in a few other items depending upon needs at the time (snacks, tissues, etc.). Having this system of organizing information made it much easier to facilitate communication between medical professionals as well as providing a paper back-up for my memory . Forgive this long post but I felt a need to share the information with you. Again, blessing to you and yours.
Thank you so much. The blog and I are slightly distant these days so it took me a little while to find your comment.
God be with you.