The Plan

30 May

Wednesday was a tough, blunt, long day at Mayo Clinic. We left some meetings feeling hopeful and other meetings feeling smacked with realism, but all in all I think my family and me are relieved that Mayo experts have enough faith to move things forward and give me a shot. 

The osteosarcoma in my sinuses is the most pressing. Likely one measly, severely injured cell that we didn’t manage to fully scorch with radiation 10 years ago has managed to stage a garish cameo. The osteo has flexed its way next to some body parts that are pretty important to me – the dural venous sinuses (that’s a Jimmy word add), my optic nerves and my carotid arteries. I like those body parts and would like to keep them intact.

My doctors’ first priority is to deal with this recurring osteo. The best shot at doing so is to do ENT/neuro surgery, which is scheduled for Tuesday, June 10 at Mayo Clinic. While they’re at it, they’re going to remove the lymph node in my neck for good measure. The surgeon isn’t entirely optimistic he can get the entire tumor out while getting safe margins (whoopsies, my brain is in the way), so my radiologist is exploring if we can follow with sweeps of radiation to laser-gun the rest.

 And about that liver of mine….well that’s just confusing everyone. The tumors are not osteosarcoma, but indeed are a “high grade carcinoma.” Pathology just can’t figure out exactly what it is. The reason they’re all stumped is because tumors almost never grow on the liver without having a primary site elsewhere (i.e. usually liver tumors are metastases). To prove it, I’ve had a glut of other screenings to figure out where these tumors may be coming from, but all have been negative. Hear the collective bewildered sigh of my Mayo Clinic top docs and their colleagues around the country. Given they appear to be crazy primary liver tumors and the osteosarcoma has to take the treatment front seat anyway, the plan is to have a second surgery to remove them after we about face my face.

So far we aren’t talking chemo, for all you redhead fans. I don’t have the kidneys or the receptivity to the protocol drugs to make it worth it.

In the meantime I’m enjoying the lull before the storm, taking in friends and family and being grateful that my medical care team and I have enough faith in each other to allow me to look forward to so much. Thank you for your ongoing love and support.

 

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36 Responses to “The Plan”

  1. Nick Hanson May 30, 2014 at 1:02 pm #

    Sorry to hear, Jenna. You’re definitely in the right place, though. I hear those Mayo neuro surgeons are pretty good :-). Who is your doc? Pulling for you and success.

    • Jenna Langer May 30, 2014 at 8:30 pm #

      Hey Nick – Thanks for your note. I’ve got an all-star team of Drs. Jan Kasperbauer (my longtime ENT), Steven Robinson (they’re finally booting me from ped onc and we all have separation anxiety over it, although Dr. Robinson is wonderful), Nadia Laack (radiology) and Jamie Van Gompel in neurosurgery. Quite the team.

  2. Rose Forst May 30, 2014 at 1:05 pm #

    Hey Jenna,

    Huge sigh, you have a plan and that will move you forward. I am wondering who will do your surgery? Lyle had Dr. Michael Link for his and we LOVE him. Of course he always had the best care there but some just stick with you. We continue to pray for you and also your family as they support you. As always, thinking of you often.

    Rose Forst

  3. Kim Seifert Samuelson May 30, 2014 at 1:35 pm #

    Oh Jenna,

    You are just an amazing individual and you have the best support team! You and your family have been and always be in my thoughts and prayers!! Stay strong and good luck!

    Kim Seifert Samuelson

    • Jenna Langer June 2, 2014 at 9:50 pm #

      Kim – it’s nice to hear from you. Thank you for thinking of me.

  4. Farah Speer May 30, 2014 at 1:36 pm #

    Jenna — you, your family and doctors are all in our thoughts and prayers. I know that you have strength deeper than you can imagine and will pull through this.

    All my best,
    Farah

  5. Shannon Mullaney May 30, 2014 at 1:52 pm #

    Jenna, we’ll continue lifting you, Jimmy, and all those who support you up in prayer. You’re a tough cookie! Let us know if/when you’d like some visitors to head your way. We’re ALWAYS up for a visit to come see you!

    • Jenna Langer June 3, 2014 at 9:14 pm #

      It was so sweet of you guys to come up the other weekend and thanks so much for the momentos of our time. We’re so lucky to have great friends like you.

  6. Susan Neale May 30, 2014 at 2:03 pm #

    Jenna,
    You and Jimmy are in my prayers – daily. Always. You have the best medical team. You will be my thoughts and prayers on June 10th. – Susan

    • Jenna Langer June 3, 2014 at 9:15 pm #

      Susan – The Anne of Green Gables book I received in the mail today is exquisite! I can’t even put it on the bookshelf, it’s so pretty. It’s meant to sit out on a table. Thank you for thinking of us. as always.

  7. Bob Van Winter May 30, 2014 at 2:30 pm #

    You are such an amazing and inspirational person! That was beautifully written. You and your family are in my thoughts and prayers. Good luck and God Bless!

  8. Amy May 30, 2014 at 4:21 pm #

    Jenna happy to get an update, I’ve been thinking about you. Stay strong!

    Amy

  9. Danny Schreiber (@dannyaway) May 30, 2014 at 5:00 pm #

    Sending love and prayers your and Jimmy’s way.

  10. Bri Kerling May 30, 2014 at 6:44 pm #

    Jenna- The fact that your doctors have faith in you show that they are pretty darn smart. Who ever would give up on a strong determined girl like you would be crazy! I hope you find some comfort in the plan your doctors have created. All the best to you with everything that comes your way. Always thinking about and praying for you, girl. I’m sending nothing but positive thoughts your way!

  11. saraelizm May 30, 2014 at 7:21 pm #

    Thinking of you now, and especially on the 10th. Much love to you and your family.

  12. Linda Mertz May 31, 2014 at 6:46 am #

    My thoughts and prayers are with you, Jenna. You’re such a fighter and I know will you be able to handle this hurdle as well.

  13. A-T May 31, 2014 at 8:29 am #

    Jenna, your courage, spirit, selflessness and articulate prose continue to influence people you NEVER EVEN MET!

  14. Margaret Shubny May 31, 2014 at 11:32 am #

    Jenna,

    Your perseverance, strength of will and insightful wit in the face of these hurdles are both amazing and inspirational. The Jenna fan club, which is likely bigger than you realize, is cheering you on from near and far.

    Thoughts, prayers and nothing but good wishes to you and your family.

    Margaret

    • Jenna Langer June 3, 2014 at 9:20 pm #

      It’s so nice to hear from you, Margaret. Thank you.

  15. Sally Squires June 2, 2014 at 8:03 pm #

    Jenna,
    That is quite a plan. As always, your wit, faith, love of family, courage and good cheer come through loud and clear. I know you know this, but it’s worth underscoring: You have a huge cheering section of admirers, rooting for you every step of the way. You set the bar high for all of us. Please don’t hesitate to tell us how we can help hold that bar up for you.
    All best,
    Sally

    • Jenna Langer June 3, 2014 at 9:21 pm #

      Sally, thank you for your kind words. It is always so nice to hear from you.

  16. Teresa Vacanti June 3, 2014 at 5:49 pm #

    Jenna, Salutations from the big O and the Vacanti clan. Know that you are in our thoughts
    and prayers as is your entire family. Though life has thrown you another curve ball there
    is no doubt you will hit it out of the park with your attitude, determination, grace and smile.
    Madeline, Emma, Andy, Bella, Elyanna, Adriana, and the newest member Caia send you
    love, hugs and kisses. God hears the prayers of children. With that crew praying for you
    he has to hear. Give Jimmy some crap from us. Love to you both. T& T

  17. Laurie Strunk June 4, 2014 at 10:01 am #

    Jenna – Alysha and I continue to cheer for you from Nicollet. You are always in our thoughts and prayers. We have faith that you (and your awesome medical team) will kick some serious butt on June 10. Stay strong…

    ~Laurie

  18. Lynn Batten June 4, 2014 at 9:47 pm #

    Always remember that you have an entire crew of half-crazy Nebraskans behind you! We’re keeping you and Jimmy in our thoughts and prayers and sending all of our love your way. Anything you need – just let us know. You’re an inspiration to us all. xoxo

  19. Julia Gourde June 8, 2014 at 8:30 am #

    Stay strong Jenna. See u soon!

  20. Tricia Schreiber June 8, 2014 at 3:17 pm #

    Jenna, do you mind sharing the time of your surgery? I’d like to take my prayers to a ‘higher level’ during that time!

    • Jenna Langer June 8, 2014 at 4:02 pm #

      Hi Tricia – Thanks for your intentions. We won’t know the time of surgery until after we speak with all the surgeons tomorrow in the pre-consult meeting, and then probably still then not until we call the hospital after 8 pm tomorrow. It’s how the surgery admit policy works at Mayo… Though I imagine I’ll be first thing in the morning and the surgery will last several hours.

      • Tricia Schreiber June 8, 2014 at 8:26 pm #

        Thank you, I know you will be included in oodles of prayers 😉

  21. Sandi Koop June 9, 2014 at 12:53 pm #

    Jenna-
    I work with your mom here in New Ulm also know your step brother Luke. My thoughts and prayers are with you and your whole family during this time. You are an amazing person who has done so many wonderful things and (from what I understand) you have a “one of a kind” team of doctors who will be with you tomorrow in surgery. We will flood the heavens with prayers for you!

  22. Julaine Balbach June 9, 2014 at 1:47 pm #

    Jenna and Jimmy, we are praying for you! Good luck with your surgery tomorrow!! May God bless the surgeon’s hands and may the good Lord bless you and keep you safe and strong! Thinking of you so much!!

  23. Sarah Mills June 9, 2014 at 7:46 pm #

    Jenna- only you can make someone laugh in that post. Brilliant, as always. I am sending all my love and prayers to you tomorrow. Hang on to all those important connections, please!

  24. kamandem June 10, 2014 at 6:30 am #

    Myleea just told me about your surgery, Jenna, and I had to let you know that you have people cheering you and your medical team on from our little corner of the world, too!!! Kam and I are sending all our best wishes for healing and recovery. Much love to you and Jimmy. You two are incredible.

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