Hello Old Friend

Mar 17

It has been a while since I’ve written.  I miss it, so here I am again.  Upon reflection, my pause is due to three things…

  1. I’m busy doing my life.  On this treatment, I am feeling much better than I have in at least two years.  I am spending much more time vertical (as opposed to horizontal), and naps are the exception(!) instead of the rule(!).  I am so, so grateful and I am trying to capitalize in every way possible.
  2. Much of my world involves my people, and it’s not as appropriate to share musings as the mother of a ten-year-old as it was when she was five.  I love my girls and as they age I think it is important to draw a line between my story and her story.  Intertwined forever, of course, but not all mine to tell.  We are toeing the line where she and/or her peers could find and read my words since I overshare on the big wide internet.  (Please not yet if your kid knows my kid.) Brad and I need to formulate a plan to address this.  Pray for us!
  3. Twice in 2018, I’ve logged in to start to write, and I have been locked out of my own blog.  This means I have to reach out to my hosting company and recapture my blog which is fairly straightforward but troubling on many levels.  As I’ve often said, this blog is only on the internet through the grace and kindness of a stranger friend who helped me set it up.  The Helpdesk person at my hosting site said yesterday that my vulnerability could be due to an “unauthorized plugin”.  Hmmm.  If only I knew what that meant…  I obviously need some tech support.

Yesterday I took my last pill of another cycle of Ibrance and one of my many miracles is that Pfizer continues to grant me compassionate use of their drug.  So far they have saved me $70,000 in out-of-pocket costs.  I do not take this for granted and I say a prayer over every $476 pill I consume.  On Monday I will go back to my oncology office for my dose of Herceptin and my Faslodex shots as per my normal schedule.  I’ll likely scan sometime in April to get an update on what is happening with the cancer in my body.  Please Lord, let it be gone, regressing, or stable.

I am sporting an almost-ponytail length hairstyle, though I am intentionally sacrificing style for length.  I should go and get it shaped up by my friends at my favorite salon so that it could look a bit nicer when I wear it down.  However I am able to scrape the longest parts into a ponytail on the top of my head (my friend calls it my Fraggle Rock ponytail, so obviously it is the epitome of style), and I just don’t want to cut away my ponytail.  I remember when I was fifteen or so my mom told me, “You’re going to have to figure out how to do your hair sometime; you can’t wear ponytails your whole life.”  She was right (about everything), but here I am defying social norms in favor of awkward semi-ponytails at the age of thirty-eight.  Anyway.  It’s nice to have hair, people.  You don’t appreciate it until you’ve been bald.  Or bald three times, like me.

Between my increased presence in my circles and my healthy head of hair, I have had many people comment or exclaim with excitement that they are so glad I’m “better”.  It is an awkward moment for me because I’m feeling relatively well, but I’m definitely not healed; it is hard to know how to respond in that moment.  Do I high-five them over the favor of this treatment, or do I educate them on the relentless nature of metastatic cancer?  It is a lot to grapple with in the produce department.  Such is the blessed burden of having long hair as a Stage IV cancer patient — I’ll gladly accept the challenge!

Greta has lost her upper middle teeth.  One wise and insightful mama pointed out to me when I had toddlers that this is the mark between “little kid” and “big kid”, and it is so true.  The little smile changes forever, and — nearly seven — Greta is a wonderfully delightful person with an established personality and role in our house.  It is indeed true that I have two big girls in my house now.  As with all the milestones, I experience far less sadness than my peers at this turning page: I am excited I get to see this moment and revel in this season.  I am looking forward to a summer of adventuring with a level of freedom that is not possible with littles.

Maren went off to school this week wearing size XXS Athleta jegging pants that I got from the clearance center in Kentucky last year.  Her legs are long, her shoulders strong, and she carries herself with the grace and ease of a dancer.  We went through her summer clothes and the poor child is down to one pair of shorts that fit; she needs a whole new summer wardrobe.  I’m stumbling around in the juniors department wondering why everything is lacy and low cut and longing for a tween store that is both “cool” as defined by Picky McPickerson and “appropriate” as defined by me, resident prudish mother.  I texted several mom friends and the resounding truth is that I’m not alone with this frustration.  C’mon tween retailers, get it together.

Last month I shared my story with the entire student body of a local high school.  (This happened sort of accidentally.  My friend asked me to speak at their chapel.  I said, “Sure,” because I am called to do life and cancer out loud.  “Chapel” infers “small building”, right?  Imagine my surprise when I learned that there were over four-hundred people attending!)  As I hugged fifty of those teenagers after my talk, I was overwhelmed with gratitude for these fun and interesting kids.  Seeing these bright and beautiful young people gave me a glimpse of the years ahead with my own girls, and it felt like a treasure.

A confounding, persistent, and somewhat maddening challenge I am facing in this season is that as I am feeling better my mind is stronger than my body.  This body of mine has been ravaged by the treatments over the past almost-six years, and it is not the body that is familiar in my mind.  Honestly, it’s what I imagine it’s like to become elderly — remembering a body that functions much better than the current situation.  I am trying to gain strength, endurance and shape back, and I’ve made little-to-no gains in any of them.  Frankly I’m disheartened in working so hard and feeling like I’m getting nowhere.  At the same time, I’m aware that this is a shallow problem: I’m simultaneously humbled by what this body has been through and that it is still as high-functioning as it is.  Nonetheless, I long for the lithe athletic grace that once marked my movement through the world.  I took for granted carrying laundry up the stairs, a day of walking the zoo, and a closet where everything fit.  Pray for me as I refuse to give up.

Earlier this week I was conversing with a friend I met in the chemo room, and we were reflecting on the knowledge that happiness is a gift you give yourself, and no one can give it to you.  I fight every day for joy and therefore my life is a happy life.  My sources for joy are largely defined by my faith.  It was an interesting dinner conversation with the girls as we discussed circumstances and what role they play in our happiness.  I really am enjoying this season with my big girls; they are sunshine and light in my days.

Brad continues to champion me and serves me in so many ways.  I am blessed to have him by my side as we navigate this life together.

Thank you for your prayers, thoughts, and investment in me.

20 comments

  1. Marlayne Skeens /

    Jen ~
    You continue to be a Wonderful Beacon of Light ~ Continued Prayers ~ Thankful that Pfizer is working with you to help you continue your Journey with your Families & Friends ~
    Hugs, Marlayne 🙂

  2. Always miss your writing and fabulous take on things, but very glad to know the silence was you Living with a capital L! What a blessing. Continued prayers for you.

  3. jennifer mcneely /

    I’ve been following you since 2012 when we were both sick at the same time. I didn’t have cancer but a mystery illness that left me bedbound and I read your words as inspiration. You continue to inspire! I love the part about happiness. You always keep it real but infuse optimis in your writing. I so appreciate you and am praying for you and your family!

  4. Lisa Smith /

    So much gorgeous wisdom here. Thank you for slicing open your heart for all of us here. So grateful for you. Xo

  5. Julie /

    Ah, so good to hear an update and know that you are spending time enjoying mom stuff and your precious family! I pray for you whenever I go for a run (ahem, slooow shuffle) and ask God to surround you with his peace and joy! You are amazing!! ✨

  6. Kim Rourke /

    So happy to read your uplifting journaling, but as others have said, also happy you have been to busy to write! Hooray for Pfizer! May the springtime sun shine warmly on your VERTICSLLY postures back!

  7. Lovely Jen, what a beautiful thing you have done by sharing your inspiring life with so many. I am seeing this from afar and feel so privileged to know you and Brad, even if just slightly.

    Do you have your blog backed up somewhere? I’m not a tech wizard at all, and can’t help with the plug-in problem, but I’m hoping you do have this material downloaded into a file.

    If I had your email I would send this privately, and I want to say loudly and clearly I believe in medication and traditional cancer treatment. I have read about the ketogenic diet and the impact it is having on some cancer cells. In this diet, you switch from being a glucose-burner to a fat-burner and at least in some cases, depriving the cancer cells of glucose causes them to not be able to live. The biggest change from a traditional diet is you limit carb intake to fewer than 20 per day and get the majority of your calories from fat with a moderate amount of protein. If this is interesting at all, there are many articles online about the relationship between keto and cancer. And I know a local doctor who oversees people and their health and blood numbers, etc.

    This is not something that involves some sort of “product” or “program.” This is genuinely simply a way of eating that is making a huge difference not only for people with cancer, but also epilepsy, diabetes, and depression. It has changed my life in the last 4 months.

  8. I’ve missed your updates, but it seems like when you aren’t writing on your blog,it’s “no news is good news”. So glad that you are feeling better. You are such a inspiration in the way that you live. We can all learn from your example. Prayers and best wishes!

  9. Giselle /

    Good to hear that you are doing well in this season. I just wanted to say that I understand your troubles blogging as your kids get older. I had a blog for many many years, and yet when my oldest turned 11-ish (maybe it was 10?), I began to struggle with keeping the blog. Not only was he more deserving of privacy, but his life was just more complicated and telling stories became quite long-winded (toddlers and elementary kiddos just tend to have cute, short stories). I now am sad I don’t have the record of a blog for the later years…I am certain that I would like a record of the teen years to laugh at later. I could, of course, keep a private blog to record these stories for myself. But I am a vain creature, I suppose, because I was most motivated to write my stories when I could get feedback from others.

    All that to say…I hear you, sister! And if you find a store without trashy clothes for 11 year olds, please share!

  10. I’m praying for you Jen. Thanks for the update.

  11. You provide such insightful perspective, my friend. I miss you and I’m endlessly thankful for you and what is happening in your life right now. Praying over you, your family, and the next scan. Xxoo

  12. Rebecca /

    ❤️

  13. Dotti /

    Prayers without ceasing for you and your family!
    You have a lot of strength.

  14. I was *so* hoping that your reason for not writing lately has been that you were busy living life with your family. I’m thanking God that this is true.
    I began blogging 10 years ago when my youngest was 8, so I recognize the struggles over what to share and how to share it. In the end, what I write are things I want to leave behind for my children and grandchildren — little clues to who I was as a person at this moment in time. (And yes, as they age out of sharing mode, at times it has been more difficult to write.)
    As for the failings of the human body… oh, how I feel this! I don’t pretend to be living with the level of loss that you experience, but I know some of that loss nonetheless as someone who loves hiking and camping, who would gladly go downtown for the St. Patrick’s parade but can no longer do these things without pain that takes away the fun. Aging takes a courage I never imagined — especially aging in a physical body that has “issues.” (I wanted to say “failed its occupant” but since we are still living in our bodies, I guess our bodies haven’t really failed!)
    Much love to you and prayers lifted up.

  15. Kathi /

    So glad the talk went so well. I’m sure you were fabulous.
    You are gifted in making words dance. Continued prayers
    For healing.

  16. Diana Gibson /

    Was missing you, Brad and the girls, but as one who lived a continent away from family for many years, I held to the maxim of “no news is good news” and that your Pfizer regime had given you a respite to enjoy life with more energy – esp not to just sit and blog! So glad to hear that you in a state where your confidence (and hair!) cause people to think you are healthy. May this Spring and Summer have you doing the things you love with those you love. Power to you Jen you do so inspire me and, I read, many others to appreciate the good fortune of health.

  17. Newbie friend /

    Hi Jen, Glad to hear that you are too busy enjoying life to blog- makes my heart happy!

  18. Amy Saxby /

    Continual prayer for you sister. Love.

    • Marsha Vonderwish /

      Continued prayers Jen! As a 3 x cancer sister- I will fight to live each day the Lord gives me.

  19. Deb Slipper /

    Hi Jen,

    I am friends with Ian and Allanah. My name is Debbie Slipper and I also have metastatic breast cancer. I am six months into chemo plus another drug called “keytruda”. I am really coping with everything well, functioning and keeping active. Even visited Ian and Allanah in January.
    Enjoy reading your blog and so glad to hear you are doing well also at the moment. I completely understand in your joy of having hair. Second time lost for me but…. this time I am using a cold cap which is working wonderfully. Even though my hair is short I am not losing any, my hair is growing and I no longer wear a scarf. Yahoo!!!!Enjoy each day, enjoy your girls and your husband.
    Debxx