Expectations

29 Jun

I have been avoiding writing this post for quite a while. Things have changed often and a lot. So let me level with you. As we knew going into surgery, I have recurrent osteosarcoma on the left side of my head. During surgery the doctors discovered that the same poorly differentiated, high-grade carcinoma that is in my liver is also in the right side of my head, cancer that hadn’t shown up on scans but is likely the primary site of what is metastatic cancer. So, basically I’m dealing with two different kinds of cancers – recurrent and metastatic – both in my head. Even I can’t come up with a good euphemism for it.

Metastatic cancer means that radiation and surgery aren’t good options anymore. The primary carcinoma cancer cells in my head didn’t show up well in scans, so who knows where else they are lurking. A lot of good doctors put their heads together and determined the best way forward is a set of chemo drugs, which they hope can simultaneously target both cancers. I had a port put in on Friday and I start chemo Wednesday. Thankfully it’s outpatient. I will receive one drug on Day 1, two drugs on Day 8, then off on Day 15 and then repeat. We’ll try two cycles and then scan to see how it’s working.

Dr. Robinson (adult onc) and Dr. Arndt (my veteran peds onc), along with so many other doctors and nurses at Mayo, have been working hand-in-hand to give me the same care I think they would give their own family. We have had serious conversations about quality vs. quantity of life, and those uncertainties hang heavily on my family and me.

In the meantime I’m recovering pretty well from surgery, minus the chronic headaches. Maxine is regenerating all the blood I lost like a pro. It’s amazing that 10 years ago this surgery would have meant scars all over my face and reconstructive surgery, while now the surgeons could operate solely through my nose and a small incision on the inside of my mouth. I’ve had several good days where I save up all my energy to get out for a few hours– my 10-year class reunion, a visit from Maxine and her family in Iowa City, a trip to the dog park with Lucy, a date night with Jimmy.

So, here we are. Frankly, I’m exhausted. By my rough count, I’ve had almost 25 procedures and scans that required long needles or worse since this began. I used to fall asleep in MRI machines, but I can’t anymore. I’m unnerved about losing my hair for the third time; I’ve had so many mullet variations to get to where I am today. I’m not feeling as brave as I did before. I think it’s okay to admit that.

But the people in my life keep me looking forward. I very much realize that most people in their lifetime don’t get as much continuous love-blasting as I have for the last 11 years. It makes me feel really good. Make sure you spread that love around.

Maxine and the whole family in Iowa City.

Maxine and the whole family in Iowa City.

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28 Responses to “Expectations”

  1. Denise June 29, 2014 at 4:02 pm #

    Oh Jenna, I am not sure what to say….God made you to bring joy and happiness to those who love you. Why does He make you suffer so? I pray your pain doesn’t hurt long. I pray your heart is filled with hope, faith and love from your husband, family and close friends. You are in my prayers always. Stay strong…

  2. Sarah Rotering June 29, 2014 at 4:03 pm #

    Jenna, I’ve thought long and hard about you these last few weeks. i’d like to consider myself a bit of a wordsmith and yet have come up with nothing. and i’d like to think that i’d have something positive and uplifting to say in the face of so much adversity. but I am dumbfounded and at a loss. my heart hurts heavily for you and Jimmy and your families, and for your dear parents who must feel every bit of pain you do in only the way parents could.
    I don’t begin to understand how this life works. I don’t understand the “why” or the sadness that comes to so many good people when they have done absolutely nothing to deserve it. i’ve learned, unfortunately, that shitty things happen to anyone and everyone, no matter what their circumstances are.
    you have fought so very hard and so very bravely. you’re poor body must be so worn out. for the life of me I will never understand (along with so many other people I’m certain) why you must continue to endure this and why those that love you so dearly must continue to watch and stand by helplessly.
    there are no easy answers or an easy way thru or out of it. love is the only answer. and so you’re right, spread the love. know that you are held so dearly in the hearts of so many. love, love, love dear girl.

  3. Kacie balbach June 29, 2014 at 4:14 pm #

    You have so many people around you that will help you continue to be brave & strong! It is crazy the love & support you have! Sending much love & prayers your way!

  4. Miki June 29, 2014 at 4:27 pm #

    Dear sweet Jenna,

    Yes – oh yes, it is OK to say you are not as brave as you were before – that is when your family, friends, Drs, & nurses kick it up a notch and most of all God is there saying – I have you sweet girl, you are in My hands! Continue to trust in God and all His glory.

    Jenna I so deeply admire you! Your transparency in your journey is simply amazing and the love, hope, faith you share through your “Redhead Reports” are absolute blessings to your readers – friends – family. Through your journey you unselfishly share yourself with the world.

    My love, thoughts, and certainly my prayers are with you!!

    Miki

  5. Melissa Gieseke June 29, 2014 at 4:34 pm #

    Jenna-
    I think about you and pray for your health often. I wish the doctors had some definite answers but remember that even though it may not seem so at the time, God will not give you more than you can handle. You have been through more crap than anyone I know, yet you are so strong and positive. Keep up your faith and hang in there girl! Hugs!

  6. Emily Metzger June 29, 2014 at 6:05 pm #

    There is never a right thing to say, I suppose, and anything that seems right is a cliche. All I can tell you is that I was crazy about you and your addictive thirst and appreciation for life when I met you a few years ago, long before I knew about your cancer history and before you resumed this awful battle.

    Every time I read something you write my heart ends up in my throat. Due not only to the dramatic subject matter, I suspect, but also your formidable talent as a writer. Once again, with my heart in my throat, I’m blasting you, and everyone else, with love.

  7. Julie Descarrega June 29, 2014 at 6:12 pm #

    Dear Jenna,
    You are one of the bravest, most courageous women I have ever known. I don’t even have the words to express how sorry I am that you have to face this battle yet again. You have been through so much in your young life. I wish i could take away your pain, but what i can do, is to continue to pray for you. My mom prays for you nightly as well. I am so glad you have Jimmy, his family, your family, and all your friends in your life to be your strength. I love you Jenna. Hugs…….

  8. onechicklette June 29, 2014 at 6:19 pm #

    Jenna, all I can say right now is that I’m thinking of you and your family and hoping this treatment produces good results. I’m sorry you have to go through this again.

  9. Kim Parker June 29, 2014 at 6:19 pm #

    You may not be feeling the bravest but in my book you are the definition of it. Peace and love to you and your family.

  10. Rachel Hoffmann June 29, 2014 at 8:15 pm #

    Jenna you are an angel in my life. You have taught me more than most. You make me realize so many things about life such as enjoying the simple things. Love you!!

  11. Ellie Beaver June 29, 2014 at 8:40 pm #

    Sending you love love love, Jenna. Your grace and bravery continue to awe and inspire me. I’m keeping you in my thoughts and in my heart.

  12. Janis Borchers June 29, 2014 at 10:23 pm #

    Oh Jenna–my heart hurts for you, and tears fill my eyes when I read your posts. Words just don’t do justice in situations such as these, and yet it’s all we have sometimes, especially when we can’t be there to give hugs. I will state it: it’s just not fair. It’s not fair that you have to go thru this again, to be so young and so ill. It’s not fair that Jimmy has to watch what is happening with his beloved wife when you should be out living life to the fullest; it’s not fair that your parents and family have to watch their beloved suffer….it’s not fair for you to be in this boat at all, not someone like you, not someone so young. And yet what can you do…..but continue to put one foot in front of the other, continue to hope, continue to pray, continue to love and to be wrapped in love, continue to make the most out of what you can.

    I appreciate you for sharing your story, Jenna. I’m sending love and strength your way, Sweet One. Your are an amazing woman.

  13. Evan Fazio June 29, 2014 at 10:25 pm #

    Well I’m just here to keep the love blasting going I guess. Much love to you.

  14. Pepe June 30, 2014 at 3:36 am #

    I remember the first time seeing you. It was your wedding day and I was trying to find the bathroom at the church which is down in the basement. When I opened the basement door, I find the bride who would marry one of my closest friends from high school. It was a brief moment seeing you in your amazing dress and I thought to myself why her? Besides the obvious of being pretty, witty, fashionable (personally my favorite), ect. You are truly honest and realistic about your expectations during this whole journey. Very few people have those traits w/o sugar coating or adding optimism to them. That is something I admire in a person and now know why Jimmy loves you so much.

    Thank you for sharing your story the last couple of years.

  15. Nanci June 30, 2014 at 6:57 am #

    I’m at a loss for what to say, and how to say it. Sending prayers and love to you and your family.

  16. Nita Seibel June 30, 2014 at 9:28 am #

    Dear Jenna,
    Just to let you know there are many people who are praying for you during this journey. WE have had the privilege of sharing in your care and cannot understand why all these events have occurred. WE love you and you are are inspiration to all of us.
    Love,
    Nita Seibel

  17. Robin (Hall) Guadagnini June 30, 2014 at 11:22 am #

    Hey Sweet Jenna (and family)! I don’t know the exact words to say….my heart breaks for you and the fear of what lies ahead, my heart is so touched by your words to love those around you, and my heart cries for all the surgeries-procedures-questions-answers-game plans- etc. that you are having to face. I cannot imagine the fear that grips you at times, and the frustration and anxiety over the future, and yet you offer words of encouragement and grace and love for those of us who are blessed by knowing you.

    I know you have an amazing physician team and amazing minds figuring out your battle plan. I know you have the love and the support of your family and friends, which is the best medicine. And I know you are going to kick this in the butt (or do I need to say bohonkus in print) and continue to be the success story and advocate that you are for saving so many lives! And I also know beyond a shadow of doubt, you will do this with grace and style and vigor and strength that you have tackled everything before you.

    Please know that I start every day with a prayer for you as I cannot imagine how tough all of this must be to face (again) and have a new cancer also.

    I wish I was closer to give you a hug, go out for a drink or bring by tea and something sweet and gooey to just sit and chat.

    While distance may separate us from physically doing that, I am willing to do any or all of it long distance!

    Love, hugs, and prayers to you Jenna (and your family),
    Robin

  18. Michelle Owens June 30, 2014 at 2:55 pm #

    Jenna, you have an amazing ability with words and with life. As a friend, you are treasured by so many. Continue to take each day and enjoy. You have proved your strength over and over so continue to fight and know that you have so many people fighting and praying for you as well. Michelle

  19. Julie June 30, 2014 at 5:47 pm #

    Dear Jenna,
    I wish we could understand what God has planned for us! Know that you, Jimmy, and your family are in my prayers.

  20. Elmer and Lois Guggisberg July 1, 2014 at 1:25 pm #

    Jenna, I read your report and also grow anxious about this new road you are on. It is not at all unusual for us to question the outcome of such a questionable diagnosis. However we have to hang on to the positive and know that God stands by us and holds us up during the worst of times. We continue to pray for you. I wish i could do more, but it is all I have is prayers. Hang in there. Love, Elmer and Lois

  21. Madame Furth / Tamara July 2, 2014 at 10:08 am #

    Jenna, I received this email from Mike who works with your mom at the county. I’m so glad that I have this opportunity to connect with you. What an amazing woman you are! You have had to deal with so many challenges since I first met you as a senior at CHS and you have handled them with such strength, grace, honesty and a maturity well beyond your years. You are an inspiration to all and you’ve helped me put my own life in perspective. We all need to live our lives one day at a time and embrace the treasure that it is. You and your family are in my thoughts and prayers – I consider myself blessed to know you:) I wish you strength and peace with your challenges ahead.

  22. Madame Furth / Tamara July 2, 2014 at 10:18 am #

    Jenna – I feel so silly…I’m teaching French now so I addressed it as Madame. I had you for Spanish so you know me as Senora Furth – oops!

  23. Becky Boyle July 6, 2014 at 4:11 pm #

    Jenna. You are the real deal. I admire your honesty and your bravery, your overwhelming capacity to love and be loved, and your incredible gift to inspire all of us who read your blog and care so much about you and your family. We will all be strong, maybe not all of us all the time, but each moment someone will be strong. We go moment by moment, breath by breath. And, just so you know, whatever the style of your hair, you are so beautiful! Always have been, always will be.

  24. Wendy Sontag July 11, 2014 at 1:26 pm #

    Jenna-
    We’re thinking about you all the time and holding you in our hearts.
    wendy Sontag and friends at LLS

  25. Alan Sherman July 11, 2014 at 1:46 pm #

    You don’t know me; but that’s ok for even strangers like I am to you care about courageous people like you, and I do. I am a two-event cancer survivor living in Des Moines, active with fundraising for LLS, and I understand your terrorist-like fears. I can only add that I know your medical team is aiming for a home run; but content for the moment of getting on base. Know that I will hold you in my prayers and for your family as well.

  26. Una July 11, 2014 at 10:55 pm #

    I am not that familiar with your type of cancer. I have multiple myeloma. But I would like you to know that all of my prayers are with you and I wish you the best. You are a very strong person to have gone through so much for so long god bless you and keep your spirits high 200.

  27. Kathryn Woodward July 13, 2014 at 8:39 pm #

    I have been avoiding reading this. I’m sending lots of love your way, as always

  28. Amanda July 14, 2014 at 3:30 am #

    Jenna-

    I hope this gives you hope and the strength you need, praying for you.
    http://www.chrisbeatcancer.com/

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