Tough Decisions…or maybe not so tough

What a week!  Wait, it’s not over yet!

On Monday, we met the oncologist (chemo) who suggested that we might want to consider extra rounds of chemo before we started the chemo/radiation rounds.

Why?

Well, he tells us, it’s like an insurance policy.  It might be overkill but there’s reason to believe that it will help to prevent recurrence because if the cancer does come back, it is almost always fatal.

Oh, well then, of course, I’ll do it, says I.  I plan to be at my grandchildren’s weddings.

On Tuesday we met with the radiation oncologist who told us that she believed the extra chemo was overkill and unnecessary and there were no clinical trials to prove it did what they hoped it was doing.  Okay, says I, will NOT do the extra chemo.  (Does this remind you of Ira Sleeps Over?)

She had another piece of info that didn’t make us happy.  The proton therapy that Medicare absolutely covered LAST year was not a sure thing any more.  Part of Obamacare is that they are scrutinizing every little cost to Medicare.  Proton therapy costs twice as much as traditional radiation and even though there is plenty of anecdotal evidence that it is better, has fewer side effects, less damage to skin and internal organs, there isn’t enough data to warrant giving it out to everyone who asks for it. Hmmm

Anyway, we left there sure we were beginning the radiation/chemo mix  as soon as possible and that the financial people would try to make a case with Medicare that I needed the Proton.  (My previous radiation for breast cancer would help in this area)  Sean got in touch with Erin who began to research induction chemo and came up with a few studies…one said it made a huge difference in recurrence rates, the others said it was too soon to tell or that it didn’t make a difference.

Today we met with Dr. Ho (oncologist) to finalize a treatment plan, told him we were going back to the original plan, skip the induction chemo.  He nodded and was pretty noncommittal.  I couldn’t stand it.

If I were your mom, would you tell me I was nuts not to take the extra chemo?  I asked.  He shrugged.  Everyone is different, he said.

What if your mom looked like me, was in about the same shape I’m in, had the same diagnosis (Stage 3 adenocarcinoma) etc.

It’s hard to say, says this very careful guy.

Okay, skip the extra chemo, says I and he goes out to get the paperwork started for the original plan

And I agonized and whined because Sean and Jerry won’t tell me what to do and I pray “Please God, just tell me what to do” and by the time Dr. Ho (yes, that’s his name) gets back, I’ve changed my mind. I went to M D Anderson to make sure I did everything possible to beat this.  They offer something that can’t hurt me and might help and I’m thinking of NOT doing it…how dumb was that?

Poor guy.  He took it well.  Left to get the OTHER paperwork and scheduled my PICC line to be put in immediately.

Chemo begins on Saturday.

Tentative schedule…chemo on 11/23, 12/7, 12/21.  Begin chemo/radiation combo around 1/6.  Finish that mid February.  Surgery mid-March.  Obviously this is tentative but if all goes according to plan(hahaha) we’ll be home in Florida for a few weeks in late February and early March (perfect for the Littles to come  for Spring Break).  We’re also talking about flying home for a bit in December…between the second and third chemo sessions.  We’ll know more about that after the first session.

Best thing about the week…decisions are made.  Talk about a flip-flopper.  I would never make it in politics.                                                                                                     {

After the PICC line was put in, I had to be wheeled out to the car (trust me I could have walked just fine but rules are rules)IMG_2589

 

Still life is more good than bad.  Everyone at Anderson dazzles us with their brilliance, with their latest and greatest equipment, with their honesty.  We haven’t driven Anne and Clark crazy yet…I went to Mass with Anne the other day and the entire school was there…All those beautiful children singing made me cry.  Sean has been a rock through all this.  Jerry has been enormously patient with his nutty wife.  Anne and I went to visit an older woman today …88 years old and still planning on doing the sweet potatoes and corn bread stuffing for her family (35 people) for Thanksgiving.  She prayed over me…incredibly beautiful.  We found a great walking /running trail at a city park too.  And, best of all, the Littles (and their parents) will be here from Saturday till Tuesday…can’t wait to see them.

 

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25 thoughts on “Tough Decisions…or maybe not so tough

  1. Oh Mary – only you could look fabulous being wheeled out of the hospital!
    I totally hear/feel your frustration at Dr. Won’tcommit I like definitive responses too! For what’s it’s worth I agree with your final decision and would have made the same choice 🙂
    Be strong friend and keep them laughing!

  2. I too had the offer of less chemo and didn’t take it! I guess I felt like the extra chemo was like having extra bullets in the gun and I just wanted to use them all to make sure my cancer cells were good and dead.
    I’m glad you will be back home for the Littles spring break. It will be a great time to look forward to for you all! Sending you hugs and love!
    Xoxo

  3. Mary,
    Emerson says a foolish consistency is the hobgoblin of little minds. Flip-flop till it feels as right as it can. Love, Kathy

  4. Dorothy Cresswell

    I completely understand how confusing it is and that when it comes down to it to do whatever can be done….I followed ALL of your reasoning, pro and con and pro again. Do you have any good music with you to help keep you in a peaceful mindset (to whatever degree that is possible)? You’re doing great—I’m just asking because if you wanted it I could send you something…

  5. Wendie Highsmith

    Mary-Gracious–what an ordeal. Sounds like you made the right decision. When I was being staged for chemo, I told the doc I wanted to get a second opinion which I did. The doc said recent data suggested I could do less chemo and radiation. I decided to go for the original treatment plan, because I didn’t want to wake up in 5 years and wish I had. You just do it, complete this chapter in your life, then move on. You are so fortunate to have all that support in Texas!
    Love, Wendie

  6. Hey, Mary – I hate those “shades of gray” kinds of situations, too. It always feels better once you make a decision and start the treatment. I remember you and Jackie helping me with that when it was my turn! Take care, Nina
    P.S. I agree with Jackie…you do look great in that wheelchair!

  7. Hey Lady, you do whatever you think it takes to get the outcome the way all your readers, loved ones and you want. Flip-flopping is part of the game and who wouldn’t be just a little confused with all the information being thrown at you in such a short period of time. Perhaps it’s good that these major decisions need to be made quickly so that there is not time for second guessing. You’ve made the correct decisions. Done. NOW just do whatever must be done and get well my friend, get very well.
    Always,
    Barb

  8. I just opened the photo and must say that you look mahvelous….thinking of you, praying for you and smiling when I think of you.

  9. Oh Mary, what hard decisions. Kathy’s Emerson quote is spot on. Changing your mind several times – hey, we’re talking about major decisions here, how can you NOT go back and forth a few times. I’m with you – use all the weapons in the arsenal and then some.
    And Jackie’s right – who looks that fabulous being wheeled out of a hospital? You’re the only person I know who could look that great! Being wheeled by a devoted son and photographed by a loving husband, that’s bound to help. And then there are the Littles. You’ve got a support system the size of Montana – no surprise, you’re such a giver. Lots and lots of love, Shirley

  10. Mary, you are my hero! (You always have been.) You never disappoint.

  11. Once again, you chose the right course of action. This Doctor didn’t realize who he was dealing with. You will keep all wondering who this Floridian is and and will cause them to smile. You are strong my friend, and always made the right move. Be happy, be strong, be well! Love the picture of you and Sean,
    Good thoughts and prayers,
    Debbie

  12. Flaithimh@aol.com

    Mary, Very good news that you made the decision that you did. Enjoy all the love your family gives you.

  13. Whew! What a week! I am a famous flip flopper too- or “ruminator” as my family calls me. I fret and fret…good job making a decision! Sounds like a good plan and of course you are in the best place.
    What a sweet picture!
    Much love…and hugs from afar..

  14. Deirdre Christman

    I would have gone back and forth for a week before I made a decision that important, and I still would have second guessed myself. You have good reasons for the course you chose and you seem confident that it’s the right choice. Brava! You sure do look upbeat in the photo, not like someone who’s fearful of what’s to come. I want to thank you for modeling grace under pressure so I can try to emulate you whenever the need arises. But I also want to urge you to write and publish. I wish I’d known you when you were writing your blog about teaching. I would certainly have looked forward to that one more than this, but I have to tell you I read your posts over and over. Yes, I want to empathize with you, but I really, really enjoy hearing your voice. I taught writing for 25 years, and, baby, you can write!

  15. Mary, Mary…not the least bit contrary! Bravo, you made the correct decision to tackle this head on. I so admire you. Tell me, who could look as elegant as you being wheeled out in a rolly chair? BTW your chauffeur is very good looking! Tell Sean I said hello. Prayers are with you all. Suzanne

  16. Ditto all of the above. What a tough call but I truly believe you’ve made a good decision. Let the healing begin!! You are in my thoughts constantly. Miss you. Martha

  17. Mary, it must be so hard to hear different opinions about treatments….would be much easier if everyone agreed. However, you’ve got to believe that you have chosen the perfect treatment for you…if you can’t go with your gut at this age, when could you? Trevina has been packing since yesterday … They leave Sunday to pick up Theresa in GA & drive to spend Thanksgiving with (brain freeze…can’t remember older daughters name) in NC. Let us know how the first treatment goes.

    Sent from my iPad

    >

  18. Mary, you are an amazing and constantly inspiring woman. Yes, you do look beautiful, but even more important, your spirit is tremendous. Sending all my love, Sonia

  19. Phew….what a week…have been thinking lots about you and so happy that you are in a place of support… I’ll do yoga on the beach and bring your spirit there. Margi

  20. I struggled back and forth just the same about partial or complete thyroid surgery for my cancer and , like you, I finally decided, why take a risk of reoccurance when we’ve come so far? I now see, by your sharing, that flip flopping is a decision process that helps us weigh all options.

    I will root for your proton therapy as I believe you should have a say in all aspects of your treatment. Why would one difficult decision be laid in your lap and not another?

    Your smile shines light on us all! I admire you deeply.

  21. Mary, I too hear your voice and it is powerful. Blessings to you and your family. Reiki continues everyday. Tori

  22. Love and prayers. Hooray for the hugs from the littles this weekend!
    Barb G.

  23. Hi Mary…WOW, I can’t believe how strong you are through this whole decision making process, but it sounds like you made the right call. You will win the battle!

    I tried to comment on your blog, but my computer is blocking all comments. Love the pictures.

    I really miss you. DFW was not the same without your laughter – we all missed you sooo much.

    John & I are leaving on Monday 25th and will be back on Monday 12/2 – we will call when we return to see what you need for us to do for you and Gerry – we want to help.

    Kiss those little ones…I can’t wait to do the same in a couple of days. Can’t believe Margo is going to be two the day after Thanksgiving. We are packing winter clothes as they are predicting snow next week – it snowed last year on her birthday! Hopefully, you will be able to spend some time on the warm beach.

    Sending hugs and kisses, Karen and John xx

  24. Mary, Leave it up to you to quote “Ira Sleeps Over” at a time like this! I love your ability to retain your sense of humor during what some might call a terrible, horrible, very bad day. I so admire your courage, tenacity and strength and send love and good wishes your way. Don’t even think about moving to Australia! Susan

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