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The final page of our book “You Mean, Besides the Cancer” went to the publisher today. In many ways, it was a greater weight to put the book together with the various rewrites, edits, and new material because both Carole and I had to relive experiences that we’re both intimately familiar with, and did not wish to relive so soon.
I want all our family and friends to know that I am transitioning all Carole status updates and medical related things to http://besidesthecancer.org. This is done with some optimism that the Carole status reports will become less dramatic and more droll as time goes by, and that someday my photography blog can go back to things photographia. (I know that’s not a word but if it makes it into Webster’s, you saw it here first).
When you visit besidesthecancer make sure to check out the ‘What People Are Saying’ tab to see the book reviews we’ve received from the California Cancer Center and Johns Hopkins Hospital. We’re also waiting for a review from the Sloane Kettering Cancer Center. All the reviews, good and bad, will end up there.
There is also a purchase link on the site but that will not be active until January of 2012, so save a little of that money your grandmother always sends you in her Christmas card for it.
The book cover looks like this:
The cover was designed by Brad Boling and I am so grateful for his help. I think it really pops, don’t you?
Another reason we were pushing so hard to get the book done is that Carole is going in for another surgery in early November. It’s nowhere near the size of her previous surgeries but it’s still a surgery requiring a few nights in the hospital and weeks of recovery. This crops up just when Carole was starting to walk without a cane or a walker. It’s OK, she will recover from this just like she did before and we’ll be back to walking by the end of 2011.
Please bookmark the new blog page because I expect some amazing things in 2012, like Carole walking on her own full time.
And don’t be shy, leave comments. I guarantee you that Carole reads every word and gets encouragement from them all!
Stay tuned! Use the RSS feed to keep current!
Thanks,
Bob
I have to admit that watching my wife get around the house using only her cane is both the high pointof my day, and the scariest. I would like to see her go slower, but her personality is much closer to a race car driver taking the turns on two wheels than a little old lady driving to church. I’m not implying that my wife doesn’t go to church, she does, but she just likes to get there and back in a hell of a hurry.
And this is not the only optimistic news; she continues to gain weight and is now a whopping 127 pounds. At her lowest point, she was near 110 pounds so you can see why 127 pounds is considered ‘whopping’ in our house.
Also, the book we dreamed about publishing is now a reality. The title is “You Mean, Besides the Cancer?” and it will be available in January, 2012. Organizing and editing the book was far tougher emotionally that we thought it was going to be, but we sincerely believe the final product was worth the effort.
The only downside to all this happy news is that Stanford, in their remarkable thoroughness, was recently prepared to declare Carole cancer-free until three growths were discovered in Carole’s right lung. The combined size of these growths is less than three centimeters, yes I said centimeters, but they have to be removed and biopsied.
This is considered a ‘procedure’ by Stanford, but we consider this to be another surgery, especially since it requires Carole be hospitalized for two nights.
This is tough news since it has taken so much out of both of us to earn this humble place on the mountain of recovery. Just as we were hoping to crest a peak we have to undergo a ‘procedure’ that will push us back down the mountain. We don’t know how far our slide will be, but it’s clear that we will be fighting for the same ground twice, and that hurts physically and emotionally.
We know there is a fatigue that settles in our friends and family about our situation since it seems to change at a glacial pace, but we have to ask for thoughts and prayers yet again. You were vital in getting us to this humble perch on the mountain, and we’re going to need your help getting back here, and even higher in the coming year.
The short version is this; you keep praying and we’ll keep fighting, and climbing.
Stay tuned.
The world continued to spin today. That’s hard to believe considering the great soul that left the planet just hours ago.
Leo was decades older than me, but we were the same mischievous fifth grade boys in spirit.
He laughed so easily, he gave so effortlessly, and he stood so ethically. We met while we were both living in California, but both of us were born in the smallest of states, Rhode Island. That coincidence was the foundation of the greatest of bonds. He was a doctor, a healer, a person who made a difference in so many lives, mine included. And he did so without expecting payment or appreciation. He was a man that every boy could model their life on, a man that took such humble satisfaction improving everybody he met, every place he stood.
Above all, he stood by and cared for his wife for over fifty years. After all that time, he still cherished and respected her. And he had such pride in HER accomplishments, just as he did in his children, his grandchildren, his friends, and THEIR accomplishments.
Life around Leo was never ABOUT Leo. It was about YOUR struggles and achievements. It was about YOUR potential, it was always about you.
All he did was make you better. All he did was build you up, and all he cared about was to enable you to reach for the next level.
This is called love, unconditional love, the kind of love that leaves everything better for having stood in it’s presence. And isn’t this the same way we describe God?
Leo, while being fully human, decided a long time ago to model his life after God, and by doing that, he enabled God to flow through him. No one who stood near Leo was overshadowed by Leo’s ego. Everyone who stood near Leo was welcomed into God’s love, and understanding, and patience, and embrace.
For as much Leo will be missed by us, he will be rewarded even more by the Father. The Father that rewards his precious ones more than any of us can imagine. The Father that rewards his precious ones for infinity.
Leo, my only regret is that I will not be able to thank you by opening the gates of heaven for you, I wish I could rehearse the choir of angels for you, I wish I could be there to see God’s arms embrace you, and tell you how proud he is of his good and faithful son.
You are one of the few people who left the earth better than how you found it, at least you did for me.
Thank you, Leo. Thank you until I can hopefully thank you myself.
Bob
PS … and you will always be my paisan.
God bless.
My wife’s medical history is very much like a series of wildfires.
I can’t say our lives were idyllic, but we managed to pay the bills and build a little home for ourselves. We didn’t have a great view of the Pacific living in Fresno, but we did keep our eyes on what we hoped was going to be a comfortable future. We had dreams, nothing too gaudy, but we talked often about traveling in an RV and taking pictures, finally going to places we could not get to while we had a Sunday morning job. Not that we were complaining, we were making some incredible music together.
The first wildfire came in 2000 when we were introduced to a new term by the doctors: Mucinous cystadenoma. Surgeons removed it and much more as a precaution.
It returned in 2003, 2006, and again in 2010. Each time the surgeons removed what they could find of it, and a little more as a precaution, except for the jackass in 2010 who removed the growth but left more cancer behind for the oncologist to find without telling us.
Each surgery while not unanticipated, still caught us by surprise. Each successive wildfire came with less notice and did more damage, but we repaired our lives and kept our dreams alive.
Then in 2011, what the jackass kept silent became the deafening, life threatening firestorm that no one should have to face. This fire was easily the worst. It was intensely painful for her. In many ways, these were her greatest hours, she suffered as few people ever have suffered so gracefully, but the fire still burned everything to the ground. Even our humble, precious dreams we had treated like our children for years died in those flames.
What we had left for our retirement that wasn’t stolen by Wall Street was used for copays, hotels, food and the mortgage. She couldn’t work and I had to be with her through all this, even though I could not protect her.
Goddammit, I could not protect her. Intellectually, I know there was nothing I could do except be there for her, but emotionally I feel so guilty that I could not protect her.
Today, our mouths are filled with new terms like wheelchair, walker, pain control…and faith.
It’s not that we didn’t have faith before. We said all the prayers and deeply believed what we believed then, but the great fire of 2011 has burned with such devastation and caused so much physical and emotional pain over such a long time, its impossible to buy into the usual beliefs that took a lifetime to build.
Beliefs that took years to trust were crushed in months. One day we were well and then one day we weren’t. One day we thought we had a humble handle on things, and then we were stepping into a new, horrifying life.
I guess you could say that the great fire has passed, but the damage is catastrophic. I feel like we are refugees in our own home. Even today I struggle to build her a bed from the scraps of singed wood that remain. I worry so deeply whether the half ass roof I built will hold in a storm. I promised to take care of her, but every night I ask myself how I’m going to do it tomorrow. Medical bills are raining down around us like burning cinders, ready to start another fire.
As surrounded by so many unknowns as we are, there is only one certainty – we cannot survive another fire.
And yet I still turn my face to heaven and ask for help. As deeply in doubt as I am I still try.
As a great preacher I know once said, some days he wakes up and asks if God is just one big, cosmic joke. I am in good company, he is such a better man than me and even he feels the doubt.
But this doubt of mine has such great weight. I will catch holy hell for saying this, but what help we do have is drying up. There must be a ‘suffering fatigue’ among our friends, and I can’t blame them. People naturally want to move on to the next tragedy, to the next poor son of a bitch lying face down in the road. As priceless as sympathy may be, I’ve come to learn it’s not endless.
And the quality of ‘help’ is often suspect. I’m tired of well-intentioned people quoting scripture to me. The latest scriptural hit is that my crown in heaven is getting more jewels because of my recent efforts on earth. I want to scream at them -
DOES HEAVEN HAVE A PAWN SHOP?
I would gratefully trade my crown for my wife to be whole again.
Sorry, having spent this much time in the trenches I have to tell you that words don’t work.
It’s late. I have to get some sleep so I can wind it up and do it all again, like I will most likely have to do until my last heartbeat.
Am I looking for sympathy?
Hell no. Sympathy don’t get the floors mopped or the laundry done.
Am I looking for deeply meaningful comments?
No thanks. I’m not even asking you to ‘LIKE’ this post.
Every night, when my fat ass hits the couch I take a minute and sneak a look down the hill to see if there is smoke on the horizon, and when there is I tell myself those are the fires I will put out tomorrow. Fires like insurance companies dropping $5K bills on us for hospitalization we were told was completely covered, fires like me trying to make an appointment for counseling and being told I need to spend $500 of my own money before the insurance kicks in, and fires like just getting her to feel good about herself again.
I promise you that I can go without, she will not.
And I can also promise that in every fire that comes up that hill, I will be next to her.
I never wanted a tattoo. Nope, wasn’t even tempted in 50+ years.
I never wanted to see my spouse suffer pain, or have to work so hard to get around, or watch her struggle to see.
I never wanted to see her make a decision no human should ever have to make, a decision to sacrifice her ability to walk in exchange for staying alive.
I never imagined seeing her so compromised.
I also never thought I would see her so strong.
She’s the hero.
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