Doing Ok

It’s been a week since I last posted.  I can’t look back on anything particularly remarkable that’s happened.  Most notable, Maggie is definitely having much less nausea.  Hurray for that!  We’ve been much more disciplined about taking the preventative nausea meds on time so that might be it.  Or the new IV pain med fyntenal is less rough on the stomach.  Or the magic steel stomach fairies came down one night and lined her stomach with unwavering stability.  Who knows?  But the break in vomiting episodes is a welcome change.  She’s been pain-free now, too, for at least the last week.  That’s a wonderful relief that could mean a myriad of things.  But the lack of crises has allowed something else to pop up unexpectedly – sadness.  We’re both challenged daily now and it’s surprising just how easy it is to cry.  It’s also surprising how frequent it can happen.  But we try not to fight with it and, rather, just let it run its course.

We’re taking both phenergan and Kytril like clockwork.  Kytril in the mornings again like we did when we first started this adventure back in ’07.  About thirty minutes or so before it’s time for her to get out of bed I’ll wake her up and give her a Kytril.  This was the only way we managed the nausea way back then and, surprise, it has worked again like a charm.  We save the Kytril for only daytime use because they’ll only give us 15 pills (total) per 49 days and even that little bit cost us something like $600.  Yeah, $600 was the co-pay.  So we treat that stuff like gold.   Oh, and that’s the generic.  But it’s working.

Phenergan we use like water.  Since it makes her a little sleepy, that’s the pill of choice at bed time.  Any other nausea creeps up during the day and we’ll take another (or at least a half tablet.)  Heck, if the wind changes direction we’ll take another one (making sure we don’t take more than the label calls for, thank you – 1 every 4 hours.)

We got the first bill from MD Anderson from our visit back in November.  $62,202.15 for her five day stay.  At least that’s the bill we’ve gotten so far.  We’ve learned that hospital and doctor bills, like debt, weight, high cholesterol and hair loss have a way of sneaking up on you.  Medicare, thankfully after all that heartache, is stepping up.  They’ve already paid nearly $50,000 of that bill which, in theory, leaves the rest to good ol’ Humana.

If you don’t have any health insurance this is your big red flashing sign for above that it’s time to re-think that decision.  Big red waving sign flashing right here in front of your eyes just for you.  Yes, you, the one in denial.  Just having major medical insurance (which is cheap!) could really be meaningful.  I know you are young, healthy and want to spend your money on other things.  We were young and healthy and hadn’t spent a day in the hospital until this time bomb went off.  A mere two months before we walked into the hospital and almost didn’t walk out Maggie and I had an argument about whether to pay for health insurance or just get it later.  Wow, I sure am glad we made the decision we did.  We dodged complete financial ruin, if not worse.  Think, think and re-think about acquiring some basic health insurance.  (BTW, that $62,000 bill is just for one hospital stay.  Just this year we’ve been in the hospital three times that I can think of off the top of my head.  And that doesn’t count the Spa visits at around $30,000 every three weeks or so.)

The up-coming schedule is as follows:
*  Tomorrow – Spa visit for labs to make sure nothing weird is happening
*  December 29 @ 8AM – scans, x-rays, blood tests at MD Anderson
*  December 31 @ 11AM – meeting with Dr. Kurzrock at MD Anderson to discuss the scans from Monday
*  December 31 evening – dinner with a few close friends to celebrate New Years Eve (yay, we made it!)
*  January 5 – scans, x-rays, blood tests at MD Anderson
*  January 6 – next chemo round

The January chemo round is contingent on how the scans from December 29 turn out.  If they show that the chemo is working then onward we travel with more of the same.  If they show that the tumors have grown then we’ve got problems again.  Back to whack-a-mole panic mode.  Maggie and I are very confident that the scans will at minimum show that the tumors have stayed stable if not shrunk.  We just can’t imagine (or rather, refuse to imagine) how they could have grown while her pain has subsided.  Come on, shrinky, shrinky, shrinky…..

Dr. Lisa will be taking Maggie down to MD Anderson for her late December tests.  Her travel schedule happens to coincide perfectly with what we need.  Additionally, it will give Maggie and Dr. Lisa some time to bond.  And, since Maggie and I both strongly believe that Dr. Kurzock will be giving us unremarkable news on December 31, there’s no real need for the Shoulder of Chris.  The visit, I predict, will be very little “oh, no!” and, instead, all “ah, ok… Great!”
 
We’ve also decided to forgo holiday travel this year.  My family will be meeting around the Christmas tree in Denton, Texas but Maggie and I will stay in Austin.  The trip to Denton would be four hours each way and, frankly, those eight hours are just enormously important to us right now.  We are fortunate that my family both understands and supports our decision.  Thank you for being such a wonderful family.

People have asked Maggie and me both what we want for Christmas.  Each time, it kind of makes me giggle a little inside because, to me, it’s such a silly question.  There’s no harm meant, of course, in such a simple, almost reflexive question, but were the person asking to ponder just for a second the answer to the question would be immediately obvious.  All I want for Christmas is for my wife to be herself again.  If I can’t have that, then all I want is for her to be happy for as long as she can be.

7 thoughts on “Doing Ok

  1. I’m glad I read this before bed. An easy time to lay awake for a few minutes. A few minutes to give thanks for what I have, and a few minutes to send sweet, healing energy Maggie’s way.

  2. Thank you for the update!

    Getting a handle on the nausea is so awesome! It’s difficult to imagine feeling sick all the time and vomiting so often. I wonder if pregnant women who have a bad case of morning sickness feel the same way. (I was very fortunate not to have had it during my 2 pregnancies.)

    You hit the bullseye regarding health insurance. I’ve had some large hospital/etc bills back when I was going through my 7 surgeries + all the kidney stone treatments in a year and a half. My bills for 9 months were 100K and insurance saved our patooties, for sure.

    Ponder getting “Eternal Life Insurance.” John 3:16. It’s the best decision this side of heaven and it will save your soul. =O) I’m living proof.

    I’ll be anxiously waiting, along with the other 300 or so of “us” who follow your blog, to read the results of all the tests coming up. Shrinkage, baby, shrinkage!! In Jesus’ Name!

    Have a wonderful time together this week and over New Year’s eve/day.

    The Best is Yet to Come!
    With Love,
    Shawna, in Frisco, TX

  3. I’m so glad to know Maggie is feeling fewer symptoms and more comfort. I can really relate to the sadness. I’ve had a lot of tears this past week feeling that I somehow got in the middle of your very special bond with each other and mourning the loss of that level of bond that I used to have. Maggie would sleep in my arms most afternoons and every night when she was very little. I had a fear for her survival when she was a baby due to her many illness and habit of not breathinng when she slept. There were no crib monitors in the 70’s, a mom just had to be very vigilant. I know you’re watching out for her, Chris, with all the love in your heart and energy in your spirit. She is going to pull through simply to keep loving and laughing with you. A mother could not wish for anything better for her daughter.

  4. Maggie, I’m so glad your pain and nausea are under control. Although I’m mortified they charge so much for a pill that helps so much with the nausea and then only give you so few. I want the same thing you both want for Christmas. And every time I have a birthday wish or see a falling star, that is what I wish for. Much love to you both!

  5. Maggie and Chris, We here in MCKINNEY (not Denton 😮 ) will be missing you so very much, but respect your wishes and completely understand. If any of the positions would be reversed, we know that you would be as supportive and want only the most comfortable and loving times together too. I know that we cannot give you the thing that you most want for Christmas (what we all most want), but maybe we can give you some small insignificant things that can help make each day a little easier and a little brighter.

    We love you and always will. You and Maggie are my heroes. Seriously, the only thing that you can give me that would make me happy (other than poof! cancer gone!)….is your and Maggie’s autographs. Each on a plain 5×7″ notecard…I want to put them up in my office with your pictures so I can be reminded everyday of strength, humility, tenacity, joy, intelligence, humor, and the power of love.

  6. You two are both so truly amazing and have such a wonderful influence on those that don’t even know you. You remind us to never take anything for-granted and to cherish the time we do have together.
    Thank you for taking the time to update.
    Sending so many prayers your way this holiday season. God Bless you both.

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