Saturday, October 13, 2018

Miles At Age 9

1. What is your favorite color?  "Could I do two?  Black and red."

2. What is your favorite toy?  "Nerf guns."    

3. What is your favorite fruit?  "Kiwi and mango."         

4. What is your favorite tv show?  "Teen Titans Go and Phineas and Ferb."     

5. What is your favorite thing to eat for lunch?  "Pizza and quesadillas."        

6. What is your favorite outfit?  "Exercise shoes, well actually, um... everything Champion {brand}." 

7. What is your favorite game?  "Baseball and Monopoly."     

8. What is your favorite snack?  "Ooh... {loooong pause}… Pringles."   

9. What is your favorite animal?  "Cheetah.  And rhino."

10. What is your favorite song?  "Down With the DC Talk {DC Talk} and The Original {Royal Tailor}."

11. What is your favorite book?  "That's hard.  My favorite book... probably Dragons Love Tacos."

12. Who is your best friend?  "Jack, Brycen, Lucas, Rahim, and Simeon.  And Logan and Ethan."

13. What is your favorite breakfast?  "Donuts, kolaches, pancakes, and French toast."
14. What is your favorite thing to do outside?  "Be in a batting cage and do swinging."

15. What is your favorite drink?  "Dr. Pepper."

16. What is your favorite holiday?  "Ooh... Christmas and Halloween and my birthday."

17. What do you like to take to bed with you at night?  "Nothing."

18. What is your favorite thing to eat for dessert?  "All cakes, ice creams, and pies."

19. What is your favorite dinner?  "Enchiladas, homemade pizza, quesadillas, and mac and cheese."

20. What do you want to be when you grow up?  "Pizza maker and maybe somebody that works at Main Event.  And geologist."

Miles, you are the sweetest, smartest, most energetic, most loving, most amazing boy I know.  I adore you.  Happy 9th birthday!!

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Friday, October 5, 2018

Nearing the End of Active Treatment!

Today was day 20/30 of radiation, so I'm 2/3 done!

My routine is the same every day.  It does vary slightly if I have PT beforehand or another appointment after, but the radiation part is the same every time.  I check in and go to the waiting area in the back, change into my beautiful silk kimono and lock my bag into a locker, and then wait, reading on my phone, until I'm called back into the radiation room.

The radiation team is super nice and someone always brings me a warm blanket and tucks it in around my feet while I get "comfy" on the table.

I lay on my back on this cradle (hard foam form), left arm down with my thumb tucked in my waistband, and right arm above my head and bent, head angled to the left and up so that my chin is out of the way of the beams.  My knees go over the blue wedge so I'm a little more comfortable.  My foam cradle is underneath the towel and was made just for me so that I'm in the exact same position every single time I'm there.  (You can see cradles for other patients on the shelves in the back.)  The team gets me in the initial position and leaves the room while the x-ray and radiation are done.

Here's a view of the machine that's used:

The table I'm on raises and lowers, turns and rotates, and the machine in the back can spin around while different parts come over the table.  I also wear special glasses the whole time that help with the breath holds I need to do.  Each time the beams are turned on, I take a deep breath in and hold it for 5-25 seconds (depending on whether it's an x-ray or radiation), keeping my lungs and heart as far as possible from the beams.  Looking through the glasses, I can see a bar that indicates my stomach as I breath, and one that is my goal for the deep breath.  As long as I match the two up when I hold my breath, I'm in the same position each time.  After each small area is radiated, the team re-enters the room, draws on me with sharpie to indicate the area that is finished, adjusts the table and machine, and leaves again.

When my 20-25 minute session is completely done, I head to the changing room, slather cream all over my pink skin, and put on a cheap t-shirt (since both the cream and the sharpie marks come off on the shirt).  Repeat the next day.

I found out today that my last 5 sessions - the week after next - will be "boost" sessions, which means next week is my last week of radiating the entire affected area.  The week after that will be shorter sessions just doing electron radiation along my scar line.

Each evening (on radiation days) I do a lotto scratch-off.  I promised the kids that any money won from the cards will go into our Europe trip savings jar, and so far I've won $62.  It's fun to see the pile of cards shrinking since I know that it means I have fewer and fewer sessions left.

My skin is holding up really well.  I'm pink - kinda sunburned - but my Radiation Oncologist, physical therapists, and radiation team have all remarked on how well I'm holding up.  Please pray that it continues through the last 2 weeks!

My hair is finally starting to thicken a bit, and I'm going to get it trimmed over my ears next week.  It still looks like post-chemo hair, but I'm starting to think that maybe it won't be like that forever.

After radiation #20

10 more radiation sessions to go, and then it's just the monthly Lupron shots and daily Exemestane pills for 5 years.  Active treatment is almost over!

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Monday, September 10, 2018

Day 1 of Radiation

Today was day 1 of radiation.  1/30 done now.  I had 2 appointments leading up to day 1, both of which included lots of positioning, x-rays, and sharpie marks.  Today was the first day of actual radiation, though.

I arrived and went back to the radiation waiting room, and changed into my robe.  They provide hospital gowns, but I wanted to bring something pretty to wear since I'll be spending the next 6 weeks there.  The silk robe my friend Jennifer sent me from Thailand fit the bill nicely.

The radiation team is fantastic.  They're all really friendly.  They had me get comfortable on my mold on the radiation table (the one we made last week) and started with some xrays, which will be standard procedure to make sure I'm lined up correctly each time before beginning.  The appointment took about 30 minutes, with the radiation done in 4-5 zones with breath holds, 20-25 seconds each, needed for each one.  They're using both photon and electron radiation on me, though I'm not sure what that means.  I didn't feel anything besides some positional discomfort during the session, but had a bit of a surprise at the end.  I was told that for the first two weeks of the six, they would be adding a bolus to the sessions (every other day).  The bolus acts like skin and brings the radiation closer to the surface, which apparently is where I need it.  Unfortunately that changed the team's tune from "some people hardly burn" to "you'll burn."

There's nothing I can do to prevent burning, but I do need to take care of my skin as best I can.  Radiation dries it out, so I'll be applying cream twice a day until I burn.  Miaderm is my cream of choice, though I used Aquaphor tonight in a pinch.  Miaderm has a lotion/cream consistency, while Aquaphor is more of an oily ointment; I definitely prefer the Miaderm.  When I start burning, I'll add in some pure Aloe gel and Calendula cream in the middle of the day.  Oronine cream was also recommended, so I may use that at night.  I'll be showering every morning so that I have nothing on my skin when I arrive for my daily radiation.  I have a bunch of mens undershirts to wear 24/7 for the next 6 weeks to keep all of my creams and Sharpie lines from transferring to other things.

Since I have 30 radiation appointments to look forward to (29 now!), I did something fun - I bought 30 scratch-off lottery tickets.  I'll have something to look forward to at the end of the day besides burnt skin and incredible fatigue.

1/30 done!

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