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My 57th Birthday? Present!

Posted on September 2, 2018September 4, 2018 by Annie Modesitt

What’s that meme that’s been around since Hector was a pup?

“Today is a Gift, 
That’s why it’s called
The Present!”

So I feel especially gifted today because it looks as though my cancer will be treated at The Mayo Clinic!  And I will be PRESENT!

The Last Few Days
I sort of disappeared for a few days while I was at Mayo, and I’ve had many folks write to ask if I’m okay, or if maybe something’s gone terribly wrong and I’m hiding it (I’m not!)  So I thought it would be good to just write up what’s transpired.

It’s been busy in the cancer-patient sense in that we drove down to Mayo for an appointment, ended up presenting with the highest fever I’ve had in months and incredibly high pain levels, got admitted to a hospital and then just — waited.

I think the 90 minute car ride was too much for me, it REALLY wiped me out.
I feel a bit feeble as I write this, but that’s my reality these days…

We were a bit late for our appointment on Thursday, so we rushed up to Dr. T’s office and we were seen very quickly.  I already had a Mayo Clinic Number (the magic number without which NOTHING can happen…)

Eleven years ago I had a minor asthma/allergy issue so I saw a doc at Mayo & was assigned a clinic number. Gerry’s insurance at the time was through his union (IATSE) and, because it was a mostly male, rather traditional union, they wouldn’t acknowledge that I had a different last name than Gerry. So I became “Annette Landy”

Waiting for Dr. T, we had to go through the assessment with a nurse, and during that time my fever began rising, my pain began going through the roof, and I was in pretty bad shape with Dr. T walked in.

We chatted at length, I’m ALWAYS surprised at how much time Mayo docs are allowed to give patients for simply talking through a case,  That is golden, and so helpful!

Dr T really wanted to admit me based on my fever, my heart rate (which was VERY high, much higher than normal) and my pain levels, and Andy and Gerry were both pushing for that, too.  They could see how badly I was doing, I couldn’t.  Pain is my “normal”, a bit more pain just felt a bit more — normal?

I agreed and was admitted to St. Mary’s Hospital (Methodist Hospital was full up, it was a busy week at the Mayo system of hospitals in Rochester!)  I had nothing with me, no computer, no underwear (except what I wore, no toothbrush; for a Virgo, these unplanned admissions are hell.)

I didn’t see Dr. T again this trip, my care was in the hands of a Treatment Team, and I dealt mostly with a very sweet young doctor named Glen Stewart.  I don’t think I’ve ever met anyone with a more Scots name.  We had a lovely chat, and I feel very confident in the group that will be dealing with my cancer.

So THAT’S why the radio silence; no radio. 

And I can’t say it wasn’t a bit of a relief to have a reason NOT to blog every day at 2am.  I’m not holding my self to a schedule in this blog, but I also know that writing regularly becomes a bit of a pact with my readers.  If you’re kind enough to want to read what I’ve written, then I should be thoughtful enough to just check in and let you know all is well!

Sweet T
We met with Dr. T* from the Mayo’s Hematology Department, who had been referred to us by Dr. H, Gerry’s OWN Hematologist for the past 12 years.  Because Multiple Myeloma (Gerry’s disease) like Lymphoma (my disease) are BLOOD cancers, they’re both treated within the Hematology Dept.

Dr T’s demeanor and presence were so comforting, so immediately soothing and so full of — LOVE — that it sort of took Gerry and my breath away.  Although she feels that the protocol I’m on is good, she feels that a stronger, more intensive chemo MAY be of use to me, and it’s a cocktail I can only get at Mayo.  So it looks like I’ll be getting my chemo at Mayo.

That last sentence is so full of hope
& fear & planning & trepidation & hope.
Always HOPE

The actual details have yet to be worked up, but at my next Mayo appointment is on Sept 6 to return to the Mayo for more testing.  I’ll remain in consultation with Dr. N up here at St. Johns Cancer Center, because he’s really great!

One of my worries was that there might be bad feelings because I want to move my treatment.  But it’s a small worry, and the docs on my Mayo ‘Treatment Team’ told me that often the initial doctor on a cancer case is happy for the extra help and guidance from Mayo.

It really was just luck of the draw that I happened to go to St. Johh’s ER where the diagnosis happened, begin treated by them is not carved in stone.  Having said that, I really like Dr. N, my medical oncologist at St. John’s, so I hope he is cool with my decision!  I think I’m due to see him this week, we can chat about it.

B-E   A-G-G-R-E-S-S-I-V-E
In my last post I wrote that I was receiving R-Chop, but I was mistaken. I was receiving something similar, but slightly stronger (I’ll write more about it when I have the actual NAME of the protocol!)  However, the NEW course of chemo Dr. T at Mayo wants to put me on is even MORE aggressive than either R-Chop or it’s nameless superseding chemo.

Because my body handled the first round of chemo so well, I think it heartens Dr. T that I may do well on the more aggressive chemo.  Plus, my CANCER seems to be a fast acting, sneaky, type of antagonist, and requires a more aggressive treatment.

The fact that I didn’t require a transfusion after my chemo, and my lab work looks very good right now, makes the decision to go aggressive that much easier.

For the moment, I’m just basking in the idea that I am SO DAMN FORTUNATE to have folks like Dr. H and Dr. T (and Dr. N, and so many other medical professionals) ON MY SIDE!

Birthday Girl
Of course, this whole Mayo thing is coming to a head during my birthday weekend (I’ll be 57 on Monday – HUZZAH!)

Fittingly, it’s ALSO happening during Gerry’s “Birthday” weekend.  

WHAT? You thought Gerry was an Aquarian?  Yes, yes he is.  But 11 years ago, on Sept 1 2007, Gerry received his stem cell transplant.  That became his new “birthday” and our family acquired a new Virgo!

I can’t say that we have a cake and ice cream every year to celebrate, but we DO acknowledge it, and appreciate it, and feel so fortunate that it’s worked so well.

So far, so good.

And, of course, that gives ME more hope.

Right there, lying in bed next to me, snoring, is my fountain of hope.

Gerry and I visited at Phrenologist at the Farm Museum in Cooperstown, NY on our Honeymoon. G was told he didn’t like small animals or children (wrong!)

Hair Today?
Also, right on schedule, my hair is making me crazy.  It’s falling out, sometimes in handfuls, but generally just one strand at a time, and usually right in whater I’m eating at the time.  Not pleasant, not fun.

So I’m going to have Andy go ahead and shave me tomorrow.  To look at my hair, it still looks thick and healthy and lovely, but when you part it you can see areas that are pretty damned thin.

It just seems easier to start shaving my head, and continue if I need to because of stubble.  Perhaps it will continue falling out so quickly that no touch-ups are required, we’ll see…

*With a 15-letter, six-syllable last name, she insists that folks just call her “Dr. T” – she is absolutely lovely!  I swear I WILL learn to pronounce her name!

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21 thoughts on “My 57th Birthday? Present!”

  1. Marta Jo Telkamp says:
    September 2, 2018 at 3:24 am

    Happy birthday a day early, Annie! May you be blessed with many more, and may they be HEALTHY! Sending you light and love.

    Reply
  2. Barbara Davis says:
    September 2, 2018 at 6:01 am

    What a story Annie! I’m sort of conflicted when I read your blog: so so sad that you’ve joined our cancer club, but so happy to see a new post from you because I know you’ll make me smile with your witty observations.
    Can the Mayo chemo not be administered at St. John’s? I completely understand your trust in Mayo, but the distance, while not huge, gets more daunting as time and winter goes on.
    Whatever you do, I know you and Gerry will make well-informed decisions.

    Reply
    1. Annie Modesitt says:
      September 2, 2018 at 6:53 am

      No, it’s a mix that only is available at Mayo, which kind of stinks, but I totally get it. So for the stronger stuff, I need to be at Mayo for days at a time. Still crossing my fingers for a cheap(ish) solution. Maybe I can just camp out…? [JUST KIDDING]

      Reply
  3. Kris says:
    September 2, 2018 at 6:36 am

    Happy Birthday a day early. To both of you! Very glad to hear of your positive experience with Mayo, and that they quickly created a protocol for you.

    A hint for you: in a tote, toss 2 undies, a toothbrush and toothpaste, a tiny bottle of your beloved 4711, a knitting project, whatever else, and a book. Toss those in the car and leave them there. Then you’re prepared, like a smart Virgo. We kept such a bag in our car for a year. Sanity saver.

    Happy Birthday again!

    Reply
    1. Annie Modesitt says:
      September 2, 2018 at 6:54 am

      It’s a good idea!

      Reply
  4. Myrna A.I. Stahman says:
    September 2, 2018 at 6:58 am

    Happy Birthday, Annie. I am thrilled you have been accepted at Mayo for treatment. Under the circumstances, that’s a pretty swell birthday present.

    While you were seeing Dr. T., we were driving to Rochester for my Friday morning appointment. I wish I had known you and family were there. I would have done anything I could to assist.

    While you are seeing your treatment team on September 6, we will be driving to Rochester for another Friday morning appointment. We generally arrive early afternoon, depending upon the traffic on I-94 and 494. Please, please, please let me know what we can do to help you and your family. We have become pretty familiar with the Mayo area, especially the subway area where the frozen yogurt shop is one of our favorite places.

    Thanks for letting us know that at Mayo you are Annette Landy.

    Sending lots and lots of good thoughts your way.

    Reply
    1. Annie Modesitt says:
      September 2, 2018 at 10:06 am

      No, that’s been cleared up – I’m currently Annette Modesitt at Mayo! We have entered the 21st Century!

      Reply
  5. Carina says:
    September 2, 2018 at 7:07 am

    Everything is working out towards the best outcome! Better doctors, better chemo, better care. That makes us all hopeful right there with you! I know you feel alone at times because it’s all inside your body, but you have an amazing team working for you and all of us cheering from the sidelines.

    I am hopeful, too, Annie, and that’s saying something. I still worry (one of my superpowers), but this is good news overall. Cancer sucks, but yours is beatable!

    Reply
  6. ccr in MA says:
    September 2, 2018 at 11:41 am

    This is good news! Well, not that you were feeling bad, but the Mayo part. Happy birthday!

    Reply
  7. Mary Brown says:
    September 2, 2018 at 12:19 pm

    Ack, I am sitting here with tears in my eyes. I am so happy for you! I Know the Mayo clinic will be the place for you. Best of luck in working out logistics. Perhaps something like a home away from home for cancer patients? I know when my son was being treated for Leukemia there were such places for the families of children with cancer. I would hope there would be such places for adult cancer patients too!

    Reply
  8. Brenda Mendes says:
    September 2, 2018 at 12:19 pm

    Lovely to read that they are taking such wonderful care of you at Mayo! Don’t feel you have to write long missives every night to satisfy your readers curiosity. Take care of yourself first, Gerry second and everything else after that. We will all understand that you’re busy fighting cancer and that’s going to take most of your focus for awhile. Sending love and caring thoughts

    Reply
    1. Annie Modesitt says:
      September 2, 2018 at 2:45 pm

      I’ll never write if I don’t feel like it – you can just TELL when someone is writing because they MUST. Not fun to read.

      But the writing helps ME put stuff in perspective, some evenings it’s been the saving of my sanity!

      Reply
  9. twinsetellen says:
    September 2, 2018 at 3:40 pm

    Happy Birthday. You gave us a present with this post.

    Remember that you have friends in town (or a town over) who are willing to be drivers to Mayo if you need it!

    P.S. I’ve finished and am loving my split cable wimple!

    Reply
    1. Annie Modesitt says:
      September 3, 2018 at 6:25 am

      Ellen, I may just take you up on that. The drive down has been the biggest stumbling block we’ve experienced. Gerry’s heart isn’t strong, Andy’s a new-ish driver, etc.

      Reply
  10. Caroline Gaudy says:
    September 2, 2018 at 4:33 pm

    Happy, Happy birthday in advance, O, Queen, My Queen! Ima keep calling you Queen till the cancer goes into remission/cure and then it’s back to Goddess. mmmk?

    xo,
    Caroline

    Reply
    1. Annie Modesitt says:
      September 3, 2018 at 6:25 am

      Friend is great. I’m kind of an anti-monarchist (seriously) so Queen makes me uncomfortable. I know, I’m SO damned weird. Just call me friend, and that’s the greatest compliment you can give me!

      Reply
  11. Tina Rose says:
    September 2, 2018 at 7:24 pm

    Happy Birthday! Glad that everything is falling in to place. By the way, the stubble falls out which I found interesting.

    Reply
    1. Annie Modesitt says:
      September 3, 2018 at 6:24 am

      I heard it would, which is great. Right now it’s a bit like velcro.

      Reply
  12. Lenora Kelso says:
    September 2, 2018 at 9:59 pm

    Rooting for you, every day in every way!

    Reply
  13. Mary says:
    September 3, 2018 at 4:43 pm

    Annie,
    Those of us with Hotels.com free nights can donate a night in Rochester MN. The only remaining fees (I believe) would be taxes. You would neeod to indicate which night to us, as well as which motel.

    Reply
  14. Kym says:
    September 3, 2018 at 5:34 pm

    My diagnosis (finally) came at Mayo. What a medical wonderland! Seriously . . . medical treatment like they provide should be the standard for EVERYONE. (I digress.) What great news, Annie. ENDURE. XOXO

    Reply

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