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Risky, But Worth It

So we have a plan.

I'll be starting radiation soon. My doctor is going to do general radiation over most of my spine, and then do very specific, targeted radiation where the tumors are threatening my spinal cord.

I've had radiation before and it wasn't a problem. The worst part is lying on an unpadded bench. For a back that's not long out of surgery, that's agony.

Of course, when you sign the consent form, the possible side effects they list are pretty scary: kidney failure, bowel obstruction, incontinence, vomiting, and so on.

Now it's true, those are rare. But they must have happened to someone some time.

There is a bigger and very real danger, though. Paralysis.

Your spine can only tolerate so much radiation. Since I've had it before, in order to give a high enough dose this time, we'll have to go above what is considered the normal tolerance level. That could mean I could end up paralyzed.

If the spine receives too much radiation, the paralysis usually isn't immediate. It can come months, or even years, later.

But we think that we'll still be at a pretty safe dosage level, that the chance of paralysis will still be very low.

And here's why it's worth the risk. There are tumors very close to my spinal cord. If we do nothing, if they are allowed to grow unchecked, I'll be paralyzed for sure.

So this was actually an easy decision.

I'll take risk over certainty any time.

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as usual you are right in your choices for you. and as usual, i shall pray that the radiation will shrink the tumors, exhaust you (think that is what radiation does!) and help you to be better in the near futur. Take care Leroy and prayers and love go out to you. jan

Sent by jan white | 7:48 AM | 3-20-2008

Leroy, You're doing the right thing. It's good to have a plan.

Sent by Marilyn | 7:55 AM | 3-20-2008

What hard choices you are having to make, Leroy. I am very glad that there is a treatment option for you and am sending prayers and all best wishes to you. You are in my thoughts daily.

Sent by Jen | 8:02 AM | 3-20-2008

It does not seem like a "good morning Leroy" today! It is a terribly windy morning after a stormy night. Our electric went out for a couple of hours last night and may go out again today. March is surely going out like a LION. Speaking of Lions - Now you are facing yet another choice. Oh Leroy, you are so used to making decisions and I can only say that I will be with you along the way as long as you choose or are able to communicate. That seems to be the crux of your life - making decisions. As we have said so many times before, at least you are here and still able to make decisions! You are a wonder in your ability to make the right ones! I extend you and Laurie my love and support as you proceed through this next chapter and please continue to allow us to come along with you. Much love and concern ~

Sent by J C R | 8:08 AM | 3-20-2008

Did we ever think we would turn a phrase such as "I've had radiation before" so easily? Once again it is always good when there is a plan. Let us know how often you will have to go and what that means in terms of transportation and navigation. Will those be draining trips or opportunities to get out?

Sent by Dona | 8:12 AM | 3-20-2008

When I started treatment for my breast cancer, I read all the literature about the dangers of the medication (poison) that was THE TREATMENT. But then people in the know kept telling me that each day of your life brings uncertainty...and that applies to EVERYONE, not just those with cancer. So you take the treatment because that is what you must do. So Leroy, you are having this radiation because it is what you MUST DO. The risks that may result are news for another day.

Sent by Helene Weingarten | 8:14 AM | 3-20-2008

Aren't we thankful for "no brainer" big decisions! It makes you mentally roll your eyes when you watch someone agonize about such things as "should I get the white tulips or the yellow roses for the table? You know tulips droop fairly quick. But is yellow too bright? What do you think?"! And we wish we were that carefree again and at the same time we're glad that we can see a bigger picture. Sounds like you might be using that foam pad again. XXXOOO for you and Laurie

Sent by Susan | 8:19 AM | 3-20-2008

Leroy, I completely agree with your last statement. GodSpeed.

Sent by sarah | 8:22 AM | 3-20-2008

Leroy,

Your opening sounded like the old George Peppard line from the A-Team..."I love it when a plan comes together".

It is a course of action and that is a good thing.

Peggy

Sent by Peggy | 8:29 AM | 3-20-2008

Would that we all lived that way, both in the cancer and non-cancer worlds! Taking risk over certainty.

Sent by Leonard from Alabama | 8:32 AM | 3-20-2008

Leroy -- I am so praying for you. How you have endured all of this is something I will never understand. I feel so humbled reading your blog. And I know your plans and decisions are right.

Sent by Tim in Rochester, NY | 8:52 AM | 3-20-2008

Leroy, sounds like a plan! Go for it. As a thought, you might ask the radiation oncologist about Proton Beam radiation vs. whatever they have in mind for you. The proton beam seems to be able to deliver the maximum amount of radiation directly to the tumors without delivering radiation to the surrounding tissues;ie, your spinal cord. Radiation is not delivered going in or coming out but only when focused on the tumors. It's worth asking about since your spinal cord can only tolerate so much radiation and this process would seem to eliminate or certainly reduce the amount affecting the spinal cord.

Best wishes and continued prayers.

Sent by Al Cato | 9:01 AM | 3-20-2008

Leroy,
You already know this is the right decision...and I agree, sometimes risk gives a payoff that certainty just cannot. Sometimes fear of the unknown can get in the way. In other words, I admire your bravery.

Sent by Kathleen, NJ | 9:04 AM | 3-20-2008

Leroy, sounds like you are going to be busy again. Well, we will all tag along. Our thoughts and prayers will continue along this journey with you and Laurie. Stay strong and just take things one day at a time.

Sent by dorothy in oregon | 9:05 AM | 3-20-2008

Good Luck Leroy,

I am meeting with my doctor today. I had a CT scan on Monday, so I am in that waiting phase. Has the cancer come back? Has it remained beaten (as it should)? Of course the waiting is the worse part. I am fairly nervous. But this is the way our lives are now. We have our scans and we wait. Obviously I am not looking forward to the cancer having returned, but I am at that point where I just want to know.

Sent by Brit | 9:09 AM | 3-20-2008

Leroy,
What you have shared today is thoughtful decision-making, weighing the known risks of your proposed treatment against the known risks of your cancer untreated.
When treatments cause side effects or aftereffects, it's too easy for patients to think or say, "I brought this on myself by choosing to take this treatment" or "The treatment is worse than the disease."
The science of medicine deals with statistics. Uncertainties. But by weighing the relative risks and benefits using all available information, you are stacking the odds in your favor for the best possible outcome.
It's hard to accept uncertainties, but of this you can be certain: You and your healthcare team are doing the best you can do. And the best you can do is the best you can do.
With hope that treatment goes smoothly and you get the expected and hoped-for optimal result.
With hope, Wendy

Sent by Wendy S. Harpham, MD | 9:18 AM | 3-20-2008

Hi Leroy,
You put it in perspective so well. You make risk look like a piece of cake.
My prayers are with you and Laurie.

Sent by Laura | 9:29 AM | 3-20-2008

One day at a time Leroy.

God Bless you Leroy.

Judy

Sent by Judy Voller | 9:31 AM | 3-20-2008

Leroy, I felt exactly the same way when I was offered the option to augment my first line chemo with an Avastin clinical trial, with rare side effects of bowel perf and stroke. For ovarian cancer diagnosed at stage IV, the five year survival rates are dismal. I had to do what I had to do. So far, I'm 2 years out and NED. I'm sending wishes for good healing.

Sent by Sheara | 9:31 AM | 3-20-2008

LeRoy, This all sounds so ghastly. I hope radiation is better than chemo. I just cringe at the thought of more chemo. I have one suggestion for alleviating your suffering. Put some audiobooks on an ipod and listen to them while you are unable to do much else. I have been doing this lately, for the first time, and they have considerably relaxed me. Jim Dale doing any of the 7 Harry Potter books is a great experience to jump start you. I had read all 7 books prior to listening and found the listening a wholly separate, wholly different experience. It was wonderful. All public libraries carry these audiobooks. I find audio experiences, whether music or audiobooks, are great pain and suffering relievers. I am a big fan of DVDS and print books but they don't work as well for pain and suffering relief. You can't let those wash over you as easily. Good luck in the days ahead. carol

Sent by carol irvin | 9:32 AM | 3-20-2008

Dear Leroy,

To hear you have a plan is wonderful. Nothing comes without risks. I'll be praying for you and Laurie, as always.

Sent by Connie | 9:36 AM | 3-20-2008

Again, facing serious decisions with grace and common sense. You're a hero, Leroy, and you're making the right decision.

Sent by Amy in NJ | 9:47 AM | 3-20-2008

What a Leroy-like mantra if ever I heard one: "I'll take risk over certainty any time." Pithy. Fierce. So you! I am celebrating that you had an easy decision this time. Those can be rare, and deserve a dallop of delight when they come. Cheering you onward from Virginia!

Sent by Sarah | 9:47 AM | 3-20-2008

Leroy,
That decision was a good one. Getting rid of the tumors will for sure make you feel better and the future look a lot brighter. Love and hugs to you and Laurie....Keep up the "great" work.

Sent by Teresa in WV | 9:50 AM | 3-20-2008

Its always hard to decide on a plan when there are risks for any decision made. Its like choosing the lesser of two evils in a way. when i had to decide on what type of treatment,i had two choices, or maybe three, and I wasnt happy with any of them, but had to decide something. We have to pick what is most comfortable to us. After making the decision there comes the relief of "ok, i made it!", now to the next step.

Sent by Jenn | 9:53 AM | 3-20-2008

Wow Leroy. On the easy-decisions-scale, that's a doozy. I wish you well. I know it will all work out for you.

Sent by Sue in Rochester | 9:57 AM | 3-20-2008

"Risk over certainty"...for some of us, life has involved a lot of risk taking, so, we have learned how to just-go-for-it.I wish you the best with these treatments. I hope a way is found to keep your back as comfortable as possible during the sessions. Hugs to you and Laurie on this first day of spring.

Sent by NancyGM | 10:18 AM | 3-20-2008

Yup. Doing something that might well help you is a whole lot better than doing nothing that won't. We here all know that. If we'd been asked to sign up for our treatments--poisonous chemos, slash'n'burn surgeries and radiation, and all the inherent side effects--before we had cancer, we would have said, Forget that! But with the spectre looming, those choices become much easier and more obvious.

I am consistently amazed, too, at how much less awful/more positive my experience (which has been sheer hell at times) is compared to that of people who went through this even five years before me. The advances being made in therapies and techniques are amazing...not quite fast enough for all of us, I know, but better than what used to be available.

So we trust our doctors, and we stay on this ride for one more circuit, and we hope/pray/wish for the best.

In your case, Leroy, you have all of us crossing our fingers for you, and that's gotta count for SOMEthing!

Peace
jj

Sent by Joan Jones | 10:30 AM | 3-20-2008

Leroy, I always told Neil to think of those radiation beams as little PacMen attacking those sick cancer cells.....crunch, crunch, crunch...go get em! My continued prayers are with you...

Sent by Laurie Hirth | 11:21 AM | 3-20-2008

This one sounds like a no brainer, Leroy. Just keep putting one foot in front of the other, and we will all keep fingers and toes crossed, prayers and healing vibes flowing.The radiation therapists I had were unusually kind people. Maybe if you tell them how painful lying on the unpadded table is, they could find a way to alleviate it? (Susan, I had a good laugh at your reaction to people agonizing over the choice between tulips and roses. I often feel the same way when I hear folks whining about the trivial difficulties they are facing. Of course, I was the same way Before Cancer.)

Sent by Doris | 11:42 AM | 3-20-2008

Leroy,

I'm not sure where your wonderful wisdom comes from, but it is an inspiration to the rest of us. Maybe you should write a book, DECISION MAKING FOR DUMMIES? You certainly know how to go about it.

Blessings

Sent by Diana Kitch | 12:07 PM | 3-20-2008

Leroy, Seems the risk is outwieghed here, still the risks are many. There seems not to be that one good choice, do this and all will be well. Have not heard that one from anyone. This disease is so insidious, why does it have all the advantage? We struggle to stay alive against something so strong and determined. Well I am determined too, as are you. Good Plan. Thoughts and Prayers, Stan

Sent by Stan Wozniak | 12:30 PM | 3-20-2008

Radiation therapy can be quite tricky, but can prevent paralysis in certain situations, and can alleviate pain in most...yes, as you mentioned there are dosage tolerance levels depending on the length of cord treated, and the strength of dose... lots of numbers fly around.

I wish you the best in your therapy.. sorry about the hard benches...

Sending you lots of hugs and good thoughts Leroy.

Always,
Krupali

Sent by Krupali Tejura MD | 12:58 PM | 3-20-2008

Tough choices but I like how confident you sound. I think feeling confident in one's choices directly impacts the probability of success. Here's to walking the fine line between the tumors and the spine with circus performer precision.

Sent by keri | 1:01 PM | 3-20-2008

Dear Leroy,
It is always good to have a plan. You, Laurie and your medical team will be in my prayers!
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 1:11 PM | 3-20-2008

Leroy, sounds like you're back in a war zone once again, taking the risks, dodging the bullets, living the story that will be told another day.

Kate

Sent by Kate Fuehrer | 1:18 PM | 3-20-2008

Dear Leroy/All,
Going through some rough times here. Despite my husband's ilness I'm am in a deep depression which I cannot seem to shake. I am trying to do my best to be strong for him. Prayers and blesings to all.

Sent by Sasha | 1:33 PM | 3-20-2008

Hi Leroy
Obviously hoping and praying that the rads won't do any lasting or nasty damage to your spine or other body parts and that it will kill those little parasites dead, and give you a lot more time.

Sent by Alycia Keating | 2:13 PM | 3-20-2008

Dear Leroy,

During the past 3 years, I have been through 7 surgeries, the full blast 35 dose IMRT radiation treatment program, and am now on cycle 9 of chemo which is scheduled to continue for another 3 - 9 months (depending on efficacy and tolerance), it's easy to relate to your decisioning process. The proverb, between a rock and a hard place sums it up well. Those medical release forms we all sign are downright scary. Especially the ones that say... may result in paralysis, death, blindness, breathing trouble, etc. But, as you pointed out, the options aren't exactly rosy either. The good news is, you now have a plan. When I've been in between plans, I always ask myself, shouldn't I be doing more right now! It makes me quite uncomfortable. Plans give us hope and maybe even a path to a cure or at least a little more quality time with family and friends.

Good luck with the new plan. I hope it works and kills the cells which have changed your life.

Regards,
Ed Steger

Sent by Ed Steger | 2:33 PM | 3-20-2008

Sasha, I pray every day for you and your family. Once again, I wish I had a magic wand...

Sent by Jen | 2:48 PM | 3-20-2008

Sasha

You sound so normal. Who wouldn't be having a deep depression with what you two are going through.

Hang in there.

Sent by Irene | 2:53 PM | 3-20-2008

Sasha,
I am so, so sorry for you, I will pray for you and your husband. Try and remember to breathe.
Peace

Sent by bettye | 3:45 PM | 3-20-2008

Hi Leroy,

Fingers and toes crossed for you!

Sent by Marcy in NJ | 5:00 PM | 3-20-2008

Dear Leroy,

You are one strong man. I'll add my prayers to all the others.

Sent by Debbie Carlson | 5:21 PM | 3-20-2008

you're very brave, leroy! go get 'em!

Sent by bill blake | 5:56 PM | 3-20-2008

Sasha,
I will say a prayer for you tonight at communion. I pray for physical healing for your husband and emotional healing for you. I believe prayers work!

As always, Leroy, prayers for you tonight.

Sent by Stacy | 6:24 PM | 3-20-2008

Here is a poem to keep you company as you go through this latest treatment cycle. I don't know who the poet is.
"Around me I wear a coat of many colors, fabrics and textures. It is made of friends and family here and no longer here, far and not so far. They are all part of my coat which keeps me warm wherever I go." May this coat bring you our warmth and comfort.
Wishing you healing, Barb Langan

Sent by Barbara Langan | 7:53 PM | 3-20-2008

The side effects listed are scary, and I'm not sure how rare. My husband has all but the kidney failure..

Sent by Cindy | 8:30 PM | 3-20-2008

My husband was fearful of having the necessary spinal radiation since he had just begun to take a few steps after being bedridden for 8 months. But it alleviated a lot of his pain and was needed to make sure they had gotten all of the tumor surgically. Tough decisions all along the way of this journey.

I didn't have a chance to read yesterday's blog until now ... thank you! I'm relieved to know others have held on to these things. I don't know why I can't seem to get rid of them. It's almost like I'm fearful that if I do, we'll need them again. Silly thinking, I know ... but as long as there's a space, I'll probably hold onto them. I appreciate knowing I'm not alone.

Sent by Dianne in Nevada | 11:37 PM | 3-20-2008

I admire you Leroy.

Sent by Lisa | 7:54 AM | 3-21-2008

Leroy, I too am grateful...grateful to have you to share and "talk to" every day. You, and my family are the inspiration that keeps me focused on what is good for me, rather than the harsh reality of my cancer. Please, Leroy,keep up the the good fight.. for all of us. God bless.

Sent by Peter in Colorado | 10:03 AM | 3-21-2008

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