More Proton Info

Gantry A device for rotating the radiation delivery apparatus around the patient during radiation therapy. This motion is designed to treat from different angles.

Gantry
A device for rotating the radiation delivery apparatus around the patient during radiation therapy. This motion is designed to treat from different angles.

Control room...where the techs hang out while I'm getting zapped

Control room…where the techs hang out while I’m getting zapped

Mary and Stephanie ...almost ready to go except my arms need to be above my head.

Mary and Stephanie …almost ready to go except my arms need to be above my head.

More on Proton.  Pretty awesome machine, huh?  I’m still trying to take it all in (literally and figuratively)  The proton beam actually comes from another place (something like a power plant outside the building from what I can gather.)  It goes into one of three rooms to zap a patient. The techs put heavy copper plates inside the box on the left (top pic) that have been designed especially for me that have tiny holes in them to send the proton beam exactly to the right place.  The gantry…that huge thing around me rotates around and the sides rotate too until they can aim it right. I found out today they’re sending the proton through my back at oblique angles.  I’m not sure how that works since it seems as if I’m lying on something solid but what do I know.  I’m lying in a head and shoulders mold that they made during my simulation to get me situated just right. During the session, the gantry rotates but it feels as if I’m going around.

On my first day, Stephanie and Diana, the afternoon techs, told me that they would be in the control room during the actual session, coming out just to change the copper plates.  They’d be working, they assured me, on the computers to make sure everything was right.

Sure, I said, I know. You’re going back there to text your friends to decide where you’re all going tonight to party while I lie here with my hands over my head trying not to move for 30 minutes.

Right, said Stephanie. We might skip out and get a bite to eat, too, if that’s all right with you.

Ha, ha.

I saw Dr. Nguyen (my radiation oncologist) today.  She looks about fifteen (well maybe twenty) is 38, brilliant and knows her stuff.  She will see me once a week…check on side effects, problems, etc.  I had a few questions…some about me and some about proton in general.  I’m still not clear on a lot of it but slowly but surely I’ll get it.

One thing I asked her was if she knew why I had been approved for proton.

Because you’re one lucky lady, she said.  It’s probably that you have a really good insurance company (Tufts is my supplement..thank you Longmeadow)

Why, I wanted to know, isn’t proton recommended for every kind of cancer?

They wouldn’t pay for it.

But if they would, wouldn’t it be better?

Not necessarily.  Every individual is different.  I work up the plan both ways..proton and traditional radiation and then decide.

And for me it was the best option?

Yes.

Why?

Because of the location of your tumor. It’s very close to the heart and lungs.

(I didn’t ask this but proton is only used for particular cancers…a biggie is prostate. I’m not kidding…it’s me and the old guys in there every day. Today, twice, nurses and techs thought JERRY was the patient and not me)

But if insurance would pay, wouldn’t proton be better for everyone?

They won’t., they never will, it’s too expensive..

So, I’m still not sure.  If proton is as good as they say it is, wouldn’t it make sense that in a perfect world (okay we don’t live in a perfect world) that EVERYONE get proton if they need radiation?  I don’t get it.

Oh well, I keep learning a little every day.

I met with a nutritionist today.  I’m still losing weight…about 16 pounds since September…and they’re concerned. (I’m not…I’m delighted…I want to stay this weight forever)  So the nutritionist gave me all sorts of material on foods to eat …high calorie as much as possible.  Add sour cream to that baked potato.  Make cream sauces and gravies for foods.  Eat ALL the time.

I couldn’t stop laughing.  I worked so hard to LOSE weight and have been so conscious of NOT eating too much or bad stuff or whatever and feeling guilty when I pigged out and all of a sudden fettucine alfredo with or without broccoli is a great idea.  I told her I am going to need to totally retrain myself after this is all over.  But for now, until (I guess things get rough even with proton) it gets painful to swallow, go ahead and pig out.  Too bad I’m not all that hungry…but I do like pasta….and my brother, John, chef extraordinaire, has offered to come and cook for a few days.  Life is good.

I might actually give you a break and NOT write tomorrow.  My poor sister, Kim, is printing these all out to send to my mom and said she was sick for a couple days and had to print out four and the envelope needed extra stamps.  I do go on and on. Enough for now.  I need to put away some laundry.

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19 thoughts on “More Proton Info

  1. See, Mary, someone is looking out for you. If you had to have cancer, at least you are getting Proton. Is this a good or bad scenario….cancer/proton, proton /cancer? Wish you didn’t have to go through this. Love

  2. Thank you for all your observations. I forwarded this particular info to my daughter in Jacksonville. Her father in law is beginning the treatment soon at m.d. Anderson. His name is Ron Orum and wife Linda in case your paths cross. Mary, you have no idea how much your writi ng means to us. You’re in my thoughts and prayers. Keep your spirits up. You lift mine. Judy#2

    Sent from my iPad

  3. Drink milkshakes! High in calories, tastes good, easy going down. I lived on chocolate Junior Fribbles from Friendly’s (for $1.04) the summer I was in treatment. I recently heard that the Friendly’s that are still open no longer have Fribble machines. What a rip-off! (I don’t know if you’d have heard that many of the Friendly’s closed; Longmeadow is Friendly-less; Holyoke, however, is still friendly!)

    Is it possible to get motion-sick during your proton therapy since you said that it feels as if YOU are the one doing the moving? I’m sure that would happen to me in a minute; I have such a weak vestibular system! By the way, I’m so happy that you qualified for those protons! Keep ’em coming!

  4. That equipment is awesome. It certainly beats a metal table. When my sister had her radiation in NY, she was often the ONLY woman in the waiting room. Enjoy the good food as the doctors advise you. Remember to have an extra fattening meal for me!!!!!!!!

  5. Wow – – pictures of the proton machine are awesome – really, awesome! You are taking part in a big-time tech world, Mary. Indulge in all the sour cream, Alfredo dishes you can – with maybe a cream puff or two for dessert. Love, Barb G.

  6. Are you at the same hospital that Barbara Bush was at last week?

    PS Love your nurses…sound like fun!

  7. Once again, we realize you are in the very best place for treatment! Yeah, Longmeadow Health Insurance. Eat all you are able to and enough to keep you strong. Be as well as you can, my friend! I keep praying for you, the doctors and the staff. Bless the proton machine!

  8. ❤️❤️❤️❤️❤️ The blog. Don’t stop (unless you need a break for the day)

  9. Deirdre Christman

    I always love you blog because I can hear your voice and feel a little closer to you as you go through this ordeal – although right now you’re make it sound less like an ordeal and more like a course in radiation therapy. MD Anderson is quite the place: welcoming, reassuring, peaceful. I’m so glad you chose to go there and that they offered you the proton therapy. I’m dismayed, though, that the American medical system does not provide the same level of care for all its citizens. Shameful! And now on a happier note: eat that pasta!!! If you can recover from cancer, you can lose weight again, provided you even need to.

  10. Interesting stuff, Mary.

    Gotta love a system that won’t cover a treatment, even if it’s the best option, because it’s too expensive !!!

    Glad you have good insurance that pays.

  11. only you< mary, can go from proton therapy teaching to laundry… You are a gem

  12. Interesting procedure & great questions on your part. 64 tonight, was 40 when I got up!

    Sent from my iPad

    >

  13. UH 0H, I feel another fight coming on – Quality medical care for all perhaps. Insurance companies look out. Mary’s got a lot of fight in her and just wait until she has a few milkshakes in her as well.

  14. Deirdre’s right – I love hearing your voice too. Only you would think to make snappy remarks to the nurses about texting, etc., funny! What great perspective and humor you have. (I sure sound like a broken record here.) SO glad you’re still feeling good. Eat, eat, eat – sour cream on potatoes, Alfredo, too bad about the Fribbles (chocolate was always just THE best at Friendly’s). Andrew called it Smiley’s since he couldn’t remember Friendly’s… we called it Slowly’s because that’s how the service was in Framingham. But those Fribbles were worth the wait. AND the weight! sigh. I’m happy to donate some of weight, btw. xoxo, love, Shirley

  15. Your description of that amazing machine is fascinating !

  16. Wendie Highsmith

    Fascinating stuff. Does the machine make a noise? Do the techs talk to you from their room while you are being treated? Is the form they custom made for you to lie on comfortable at all? It looks like a giant MRI machine. Eat up, girl! Protein, protein, protein-Help those cells fight!!! Your cheerleader, Wendie

    _____

  17. Linda Underwood

    Oh, Mary I am so glad that you are getting Proton but my heart goes out to others who aren’t able to benefit from it. My antennae went up when you said men with prostate issues are getting it. I hope this isn’t another issue of men making decisions to benefit men. It seems many of the large medical research projects look at men and then women as an afterthought. But I am glad you made it through for whatever reason. I think it funny that they think Jerry is the patient. Linda

  18. I had a friend who went through traditional radiation for the same type of cancer and he did lose a lot of weight so as long as you’re comfortable eating, live it up!

  19. Wow Mary! Leave it to you to turn proton therapy into a “teachable moment”!! You certainly know how to pass the time under very straining circumstances. Your body may not be in top form but your mind sure is. Keep on keeping on my friend. You’re amazing!! Love, Rosanna

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