Proton Therapy 101

Several of you have mentioned that you’ve learned a lot about cancer treatment from the blogs.  Many of you (too many of you) have been there, done that, have the tee shirt.  The good news is you are still here and that gives such hope.  My only sadness is that some of you had to go through it so young.  It is unconceivable how anyone can go through this with small children at home and I know many of you have done that.

Anyway, as I learn about proton therapy, I’m going to pass things on to you, because it’s so fascinating and relatively new.  If you don’t want to go through Proton 101, just skip it.  But scroll down to the end and check out the pictures anyway.

First, I’ve started rating my days and keeping track.  10 means it’s as good as a regular day at home BC (before cancer)…you know, maybe not perfect, maybe a shoulder ache or whatever but nothing that would keep me down.  1 means I’m ready to pack it in, don’t have the energy to care anymore.  (there have been no 1s.) The last two days have been 10s…yesterday, even with two trips to Anderson, I was as good as it gets.  I think I’m getting on Jerry’s nerves.  I’m just too damn perky these days.  It could be the new meds (more about that another day) but I might be getting a placebo.  Whatever it is, I’ll take days like these any time.

Next, your kind words are blowing me away.  I am not brave.  I am not amazing.  I am not wonderful or beautiful or exceptionally strong…Or maybe I am.  Maybe we all are.  Maybe we forget to tell each other how amazing we are because we don’t know what burdens anyone else is carrying.  You KNOW what I’m dealing with because I’m on your computer every night.  But I only know a little about the courage and beauty and strength that it takes for each of you to face each day with good humor and laughter, to do your jobs, to care for loved ones. to not snap at a coworker, to keep on keeping on.  We’re all pretty amazing folks and we need to tell each other that…not just the one who’s saying “Look at me” all the time!  (Honestly, it’s the writing that I love. It’s my therapy.  I just recommended to a friend who’s having a rough time.  She’s a fabulous writer and I told her that if she started Friday night emails to a few trusted friends, she might not need a therapist and when it was over she’d have a book deal worth millions)

Okay, what I’ve learned about Proton Therapy, part one.  Hopefully what I tell you is accurate…or close enough.  It’s a different kind of radiation therapy, more precise and more directed.  One website described it like this.  Traditional radiation therapy is like a bullet aimed at the tumor.  When the bullet hits the body, it’s at full power.  It starts to slow down as it passes through the body, hurting everything it goes through until it exits at the other side of the body.  Obviously, it hits the right spot but it also damages tissue on its way to the site and on its way out the other side.  Also, it hits the stuff BEFORE the site harder than the actual site because it’s loses power as it moves forward.  So, first, other tissues and organs can be damaged (sometimes seriously) both on the way in and on the way out. Theoretically, that means doctors have to do a cost/benefit analysis….how much radiation can the rest of the body stand?  How strong a dose can I send?  They often give milder doses because of risk of damage to other tissues, often meaning a longer time for therapy or worse, not strong enough to do its job. However, as many of you know, traditional radiation therapy DOES do its job and lots of you are proof of it.  Proton is just the next step, I think.

Proton on the other hand is like a smart bomb.  It heads into the body and doesn’t “explode” until it reaches the site it is aimed at.  And then it stops.  Because of this, they can give a full power dose.  It’s not going to mess up anything else.  Obviously the measurement better be right (in both they need to be right) because if the “explosion” is off, you could end up with some pretty damaged tissue and a tumor that doesn’t go away.

Okay, enough for one night.  Forgot my iPod again tonight for therapy.  Decided to listen to 50s music on Pandora.  Loved it but when your main job is to lie there and NOT MOVE listening to The Lion Sleeps Tonight and Wake Up Little Susie and I’m a Wanderer without jiggling and trying to dance required enormous concentration.  Don’t think I’ll do 50s music again. I really do need to bring my church music.

A few pictures…tonight’s are of the Proton Therapy Center.  It’s a totally different building about two blocks from the main building and it’s lovely.  Nice entrance…and the waiting room is beautiful  Jerry came in with me and took pictures of me on the table…I’ll send them tomorrow.  Tonight you’ll see where we hang out till I go in.

Entrance to Proton Therapy Building

Entrance to Proton Therapy Building

Rock waterfall in waiting room

Rock waterfall in waiting room

Bored? Work on the puzzle

Bored? Work on the puzzle

My favorite place to sit..right by the water
My favorite place to sit..right by the water

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21 thoughts on “Proton Therapy 101

  1. During the day I keep checking your blog, I really look forward to your words! Were you always this wise? I’m so lucky that you share your experience. You have given me so much food for thought.

  2. You are so right, Mary, about the therapeutic value of writing. I have a dear friend in San Diego and we tap a note to each other at least once a day. Sometime short- sometimes long. It depends what we have to say but I can attest that when I am down or fed up with something or very happy it is just wonderful to share/unburden. Very cathartic. Linda

  3. Fascinating about proton therapy….makes a lot of sense.  Do skip the 50s music…how about a nice rendition of 99 bottles of beer on the wall…that’ll calm you down!

    Jerri 521 Cedarwood Lane Venice, FL 34293 941-445-4118

    “Camping is nature’s way of promoting the motel business”.  Dave Barry

  4. Hi Mary, you need to take credit where it’s due! You are amazing, beautiful and a wonderful turtle patroller! 🙂
    Thanks for the so interesting 101 on Proton therapy…sure makes much more sense! You rock girl but just don’t move! Thoughts are flowing your way! Talk to you tomorrow. Pam G

  5. Mary, I love reading your posts. You have a wonderful way of expressing what you are going through. I sit reading them and thinking, I know what she means. I totally get it. Thank you for putting into words what I am sometimes unable to express. You validate my feelings. Please know you are always in my thoughts & prayers. Keep smiling.

  6. “hold completely still”. Lol 😉

  7. Excellent description of the proton therapy process. I am so fateful for your writing – reading your blog (and Brad’s) give hope and inspiration in learning more about cancer, and how to deal with it. I’m pleased you passed along the “writing” idea to your friend. Loved when you wrote, “We’re all pretty amazing folks and we need to tell each other that.” Keep on being, “too damn perky,” Mary. 🙂 Love, Barb G.

  8. Wendie Highsmith

    Mary-Very useful info about proton therapy. Seems to me, those who need radiation should be getting it–the outcome is better, better. Thanks for being candid about what is going on. It feels like it helps you, and it definitely helps me out here in Colorado. Love to you, Wendie.

  9. Mary, Thanks for the great description of the proton therapy. No one writes like you! Keep having “10”days, will you? Hugs, Gina

  10. You give us more reasons to think how very amazing a child is (and everyone else) even when we feel like pulling out our hair. I am blessed to be in Laura’s company and still inspired by your thoughts,

  11. Good info, Mary

  12. I’m pretty sure Pandora has church music, Mom. I’ll see if I can find out the right search term. I found Here I Am, Lord and On Eagle’s Wings and I liked the songs on both those stations. They had You Raise Me Up and Amazing Grace and such on them. For the next time you forget you iPod.

  13. You’re right, we are all amazing, brave, wonderful and strong in our own way but some of us have those qualities tested more than others. You are passing the test with flying colors!

  14. Here’s to many more tens!
    How is Jerry keeping up with you? You posted this at 10 p.m.. I tried to wait up for it but I have to admit I crashed before it got here.

  15. Mary, you are an inspiration to us all. I so look forward to reading your blog. I reminds me how much I miss your weekly blog that you wrote when you were teaching. So glad that you are rating your first few days as a 10. Most people in the northeast because of the COLD, are way below that. We must be grateful every day!

  16. Makes me wonder why proton therapy doesn’t completely replace traditional radiation. What is so wonderful about your writing is that it not only provides comfort to you, it is a source of support for so many others providing inspiration, information, laughter and more. Bringing us along on your journey, is also a way for us to give back to you. I’m thinking all our positive energy may be the cause of your excessive perkiness. But we’ll keep it coming.

  17. Proton therapy sounds fascinating and more high tech than radiation. So happy you’re getting state of the art treatment. This, your attitude, God , your friends, family and Jerry will have you back in FL healed doing turtle patrol, yoga and all the things you love soon. You go girl!!! you’re an inspiration.

  18. Thanks so much, Mary, for the 101 lesson on proton therapy – very interesting, reassuring; SO glad you are getting state of the art therapy. You are surrounded by amazing friends, but there’s a reason for that — It’s so not by chance. You’re the glue, the magnet. Admit it or not, you are incredibly inspiring. I eagerly await the next blog, always hoping you’re not having a down day, always amazed that you’re not. You really help me with your humorous and optimistic, grateful attitude. But, it’s also okay if you don’t feel perky. I do hope that no one is saying “grim up”!! to you. 😀
    Lots of love, healing thoughts every day to you. Shirley

  19. I love that you’re perky….:) and thanks for the info.
    The pictures look a lot like the D’Amour Cancer Center at Baystate in Springfield. We went there a lot with Bill’s dad for a while. These people get it. Water, flowers, beauty makes it a bit easier.

    Love your writing – keep it up —— and that perkiness!! 🙂
    Karen

  20. Thank you for educating us on proton. It is absolutely fascinating. I imagine that the staff looks forward to your visits and is in awe,as all of us who know you are, of your good humor!
    Irene

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