Speechless

Thursday was a beautiful day and a hard day. I was totally wiped out from our trip back to Houston. I just kept lying down every time I had a chance. Couldn’t open mail and boxes, couldn’t unpack, could barely move. Then we went over to MD Anderson and sat for an hour waiting for the proton simulation only to get a call from the tech guy wondering where we were. We were where the schedule told us to be. He had us scheduled for another building entirely, had me down as a no show and wasn’t sure he could fit me in. Evidently he worked some magic and did it so we hopped in the car, went over to the other building and I went through the simulation.

However I was a little worried. This was the traditional radiation center, not proton. So I checked and oops, they had me scheduled for traditional radiation. He promised he’d check on it but I trust no one. Muttering the Serenity Prayer to myself, as soon as we were in the car I started calling. It took several calls but I’m all set.  Just goes to show, that even in a place as amazing as MD Anderson, you need to be on the alert.

Proton begins January 6 and ends February 13. That means I’ll most likely be going home around Valentines Day, coming back for restaging , tests and most likely surgery in late March.

Finally got up enough energy to open packages and cards that had been coming while we were in Venice. I can’t begin to describe how NOT alone I feel as I bumble along. My Center School family sent a charm bracelet…one charm from each of my old friends along with notes explaining why they picked a particular charm. I’m getting compliments here at Anderson on it. The lab tech who did my bloodwork earlier today was asking about each charm.

Why the turtles? She asked. Are you slow?

I can be, says I but actually people chose them because I do turtle patrol in Florida.

What’s that? says Felicia.

So Felicia gets a mini lesson on endangered sea turtles and I get my bloodwork done.  Fair trade.

Met with Dr. Ho (oncologist) yesterday.  Sean likes him.  I think he could use a better sense of humor.  The guy is way too serious.  He’s thrilled that I can swallow again…figures the tumor must be shrinking.  Everything else looks good.  White blood count was back up so I was good to go for chemo today.

Chemo …First time, Sean, Jerry and I played cards, gabbed and read.  Second time I wrote the article for Elin and read.  This time…mostly I slept.  I finally woke up around lunch time, had some lunch and feel just fine but it is crazy how much sleep I seem to need these days.  Great company for Jerry who just reads the paper or his book.  Patient guy.

My sister, Eileen,is coming tomorrow.  It’ll be a short visit…she’s heading to Katy, just west of Houston,  to spend Christmas with Chris and Jackie and her three incredible grandchildren.  We’ll be leaving on Christmas Eve morning for Erin’s after my IV line for chemo is disconnected late Monday afternoon.  Sean and Carly will arrive Christmas day.  The Ginleys will all be together.

Other stuff…I now have two wigs…I’ll have Jerry take pictures one of these days so you can see them.  I just hope my granddaughters approve.  Poor Declan…Erin told the kids that Nana had lost a lot of her hair because of the medicine she needed to take for her cancer and Declan was worried that when HE took medicine, he might lose his hair.

And I have lots of new makeup…splurged at the Clinique counter at Macy’s the other day.  The saleswoman was lovely…and I spent a fortune intending to look good even if I don’t feel good.  It’s hard for me to believe people spend this money on makeup on a regular basis.  Does it REALLY make that much of a difference???

All’s well in Houston, TX…rainy and warm.  Hoping all is well where you are too.   Christmas is coming.  No more Anderson until Jan. 2!  Yay!

Charm bracelet from Longmeadow

Charm bracelet from Longmeadow

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16 thoughts on “Speechless

  1. Wendie Highsmith

    Oh, Mary-I have often said you got to be in pretty good shape to get through the maze that is medical science in our country. Flat-out-sick-in-the-bed people need an advocate who can keep track of everything and be willing to call and call to get things righted. I am sooooooo sorry about the confusion at Anderson about your treatment and sooooooo–glad you got them “righted.”

    I have neither your TX or FL addresses. Would you send both when convenient? Blessings, Wendie

    _____

  2. So much optimistic news packed together in your post, even with the typical scheduling mixups I thought only I am doomed to expect and now take for granted. The charm bracelet is such a fitting show of support and love; I am so happy you can feel the embrace of so many during this time.

  3. What a beautiful expression of caring that charm bracelet is! Glad to see you have chosen two wigs. I’m sure they are adorable! Sorry about the scheduling mix-up and glad you were able to straighten it all out! You are amazing! Enjoy your time with family and know we are all sending good thoughts your way from where ever we may be! MERRY CHRISTMAS!!! Martha.

  4. Oh Mary, the charm bracelet is wonderful!!! I love that each person chose a charm with you in mind! I had to laugh—I had a Dr. Hu (long U) in my year of medical madness. Do rest as needed—I know that is your best
    I DO want to see the wigs modeled!

  5. Mary, I’m so glad all the Ginleys will be together! So important! So will all the Nietos.

  6. Glad you’re on top of treatment down there. Doctors, schmoctors, it takes a teacher to be organized.
    Glad too that you are enjoying your bracelet. It was made with lots of love!

    • So glad you love the bracelet. It comes with all the support we can give. I’ll be in florida in a few days, sorry you will not be there, otherwise rosanna and I would take a ride over. Enjoy the Christmas festivities, rest as needed. Everyone at school was so glad to escape… So let’s hope we all rest to get ready for the new year. Keep those medical people on their toes and advocate, even if you feel like a pain in the ass!!!!!
      Merry Christmas.
      Mary

      • It comes from the prayer….you know, Have the courage to change the things I can. It got crazier. They scheduled me for radiation at 10:00. I thought it was morning…never dreamed it was PM(translate almost midnight) So I got on the phone (again) begging them to find another time if one became available. I felt like a pain because she explained to me that the early morning slots went to babies who needed to be without food until after radiation. And that they tried to get the elderly in during the day but even then, they’ve had people in their 80s coming in for the 11:30 pm slot. I backed down…said do what you need to do and forget it. I’m fine. She said, No, right now the focus is on you. I’ll see what I can do (what a sweetheart) So I’ve got radiation appointments all over the lot …mostly at 6:00am (guess if babies are still sleeping you wouldn’t want to wake them) 6:00 works just fine for me (That’s 7:00 EST) Not so great for Jerry but I can probably drive myself unless I get really pathetic!

  7. Loved talking with you today! Rest up so you will be ready for all the love the family will shower you with. It’s no surprise you love the charm bracelet that was Jackie’s idea. Everyone jumped on this beautiful thought and wanted to be a part of this loving gift. Wear it and know we are praying and thinking about you. Merry Christmas and Happy New Year to you and all the family!

  8. It’s wonderful to have such loving and caring friends, especially Jackie and Deb both of whom orchestrated the bracelet. I am sure I speak for everyone who contributed when I say that we hope it brings you the strength to do what must be done and to know that each step of the way is filled with the knowledge that there are many, many people who stand by you and provide the necessary light to lead your way. We’re all praying for you, Mary.

    I love the make-up. I know just how important it is to feel that you look well. Last time I bought make-up was for Ilyse’s wedding (she’s married 18 years) but I admit to purchasing lipstick more frequently than that. However, you look great and your smile always feels a room.

    The Ginley’s together for Christmas; this is a wonderful treat. Enjoy each moment and treasure them. Merry Christmas.

  9. Love your bracelet Mary!! What a very special gift.
    I’m hoping you have a fantastic holiday with your family. I’ll be thinking of you and sending warm wishes. Don’t forget to open your window and catch them.

  10. The bracelet is beautiful! So typical of our dear Longmeadow friends. One day we’ll have a big reunion right here in Florida! It’s so great you’ll be with your family for Christmas. Enjoy every moment, Mary. God bless you all with a wonderful Christmas. Love, Rosanna

  11. Deirdre Christman

    That beautiful bracelet reflects your beautiful spirit! You’re the only person I know who could sit down and write a blog after all the frustration you’ve experienced. Now you deserve a joyous holiday break with your family. Enjoy!

  12. We love you, Mary. Your sparkle. Your twinkle. Your joy. Your bling. Your spirit. Say, with Mary Ginley in your life, it’s Christmas all year round!

  13. Love the braclet! It really does let you know you are not alone. The boys come tomorrow and will stay until Friday; short time, but it’s the first time we have all been together in a long time. Enjoy your time with your family. Take a nap when you need too. Laugh. Look for your God winks-they make you smile. Merry Christmas, my friend! Love ya, G.

  14. So glad the bracelet has arrived to bring you our love and good cheer! (Thanks to Jackie for assembling it so beautifully…) I’m happy to hear that the protons are all set to go, no thanks to the scheduling SNAFUs (a very appropriately named acronym). Enjoy being with your family for the holidays.
    Love from your Friend, Nina

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