An update and associated boldness

I’m coming off a week at the beach (awesome, amazing and fantastic!) where I had no wifi, so I’m reconnecting slowly today.  This post is a hard one to write because it’s hard to look head on into the diagnosis, but I figured it was time for a medical-ish update on how I’m doing.  In my everyday life, and therefore my everyday writing, I err on the side of joy and optimism.  Today I’m purposefully stripping some of the sing-song-cheer (although I still feel it) to present some of medical truths of my life.  As you read, remember that I’m doing well–very well!  Life is good!

Socially, assumptions and perceptions are weird because they are proving to be counter-intuitive in my case.  Last year at the start of the swim season, my hair was awkward-short.  I had so little hair I had to wear a hat in June to prevent sunburn to my scalp; this made me look sick (or at least “not normal”) but I was actually three months post-chemo and No Evidence of Disease.  This year, my hair is short, but not awkwardly so.  I think I look healthy, but I’m actually “sicker” with measurable cancer in my body and a cycle of good days and bad days.  From my recent catch-up conversations, it seems like the general public does not know what Stage IV breast cancer means.  I’m struggling with how to share, converse and answer, “How are you?”  “I’m glad you are better.”  “You would never know you had (<–past tense?) cancer.”  “Why are you still in treatment?”

Now that I am through my funk, I am back to my new normal.  I do not have to grit my teeth and muscle my way through everyday things.  The flu-like symptoms have passed and I can rise in the morning with a clear head and no pain, rather than operating in what feels like a stumbling haze.  I still need to make up the deficit that comes with operating only the essentials for a few days, but it’s workable.  The good news is that this last round of the funk was better than the previous two; I am learning the nuances and adapting my routines.  Prayers are covering both my spirit and my body; I feel them.  My village is super-helpful, selfless, and encouraging and to you I say, thank you and remember to pace yourself for this marathon, not a sprint.

I’ve had a mental adjustment to make over the past two months.  Thus far over the past 3+ years of life with cancer, I’ve had two distinct treatment courses: twice I’ve been on Chemotherapy with a capital C… the hard stuff.  The hard drugs have a clear starting line and a clear finish line: a countdown of treatments to the end of the rainbow when you’re done and your body gets a hard-won reprieve.  Twice also, I’ve been on targeted therapy treatments: drugs that target the cancer and leave the healthy cells alone.  Essentially the contrast in how I felt was Very Sick versus Very Healthy.  Now, with this new drug I am experiencing what feels like new terrain.  The drug itself is the middle ground between my two past experiences: it contains both chemotherapy drugs and targeted therapy drugs.  I’m not “bald sick”, but I am debilitated from operating at my normal full capacity.  And–this reduced capacity is going to continue indefinitely.  That’s new.

The accompanying side effects have been challenging, but the real force to contend with has been the knowledge that this new regimen is the best case scenario.  My medical team and I are united: we want me to remain on this treatment protocol for a long time to come.  Thus, my new reality of having several white-knuckle days every three weeks is the newest in a long line of cancer burdens to adjust to.  I’ve finally caved and accepted services from a local breast cancer organization (Pink Ribbon Girls); they are footing the bill for my house-cleaning services so that the obligation to get to the deep cleaning is erased from my plate.  The lost time means that I can’t do all I used to do, and it is hard to accept that.  I don’t want to give anything up–accepting the help and making it a “permanent” arrangement rather than an assist to get us through a hard season is a disappointment that it has come to this.  However, I persevere in my positivity, and I am grateful the help is available and that I am so well-supported.  It’s a gigantic Woo Hoo blessing to have my house cleaned for me under any conditions, right!?!

Some — most — other cancer patients I know prefer anonymity; they keep their health condition a secret.  I’m weird in that I live so very out loud about it all.  My reasons are threefold: one, I strive to be authentic and despise fakeness and “mask”ing, two, I feel like God has called me to be a storyteller, and three, I want to bring attention and education to the realities of breast cancer — especially metastatic cancer — beyond awareness and pink campaigns.  It’s a tricky balance to understand the tenacity in which I swing on hope and the counterbalance of the cancer weight.

Twice in the past month I’ve been sitting in a tight circle of friends: different groups each time, but both groups of real, true friendships and people who know me.  Often, I ask these people: am I consistently representing myself in my writing (via my blog) with who I am?  Is the Jen that you know, the same Jen who appears on the blog?  The insights that arose from those conversations seemed worthy of mention here.

In the first group, a thoughtful girl asked me this question, and my answer surprised all of us, myself included.  She said, “It seems like you have such an amazing community of support around you, and people do ridiculously amazing things for you like the Christmas lights on your house, but I want to know: are you lonely in spite of the stories you share?”

What a great question.  Yes.  Yes, I feel lonely sometimes. I think every human feels loneliness as we all have unique experiences.  There are precious few friends I have who have metastatic/Stage IV/terminal cancer.  We can share and relate in ways that my “real life friends” can’t.  My “cancer friends” and I don’t really go deep and process together, but they get it because they are also living it alongside me.  Last year at this time I had three friends like me — young, young, young women who have the same diagnosis.  Now, I have one of those friends because the other two died.  They freaking died; I’m still reeling.  That’s the very worst thing about cancer: people die.  My friends die.

In the second group, my friends shared that — yes, I’m the same — but that my blog is so positive that they don’t think the average reader knows what my medical reality is.  And, I guess that makes sense: I know the realities of Stage IV because I’ve seen friends live it and I’m living it.  All my knowledge is firsthand, and I’ve learned a lot.  (Remember, I have a no google rule; if I have medical question, I ask my medical team.)  I dwell in the land of hope, I don’t spend time and energy thinking about medical expectations/trends/trajectories.  I know that there is a bell curve of expected life span for Stage IV folks, but I intentionally don’t try to pin down my medical team for what that means for me.  My goal is to keep my eye on the prize of my 50 year miracle.  The super scary sad side of the bell curve is that you can die in a matter of months if the cancer is aggressive.  The super amazing side of the bell curve is the miracle side: people that live decades longer than they “should” have.  That’s my reality: I might die in a matter of months; I might live for another forty-six plus years.

The line through the first part of that last sentence is how I feel about it.  It’s there, hovering, omnipresent, but I work so freaking hard not to let it overtake me.  I can’t even write the sentence without the strikethrough because I am so very diligent about not dwelling in that realm.  So, there. I “said” it, but now I want all of us to collectively take a deep breath and pray for my miracle, okay?  Prayer.  Peace.  Joy.  That’s the order of this day and every day.

The scary side of the bell curve is what keeps me and my family on our Palooza schedule.  We say yes to experiencing life to the full and we trust that we will have no regrets over our pursuit of adventure, special memories, deep relationships.  The three things that make the scary side palatable are Palooza-living, people who step in to share/gift life with us, and my faith in Jesus and my belief that whatever is to come will be good by His grace.

The happy side of the bell curve is where I let my mind linger and dream.  I imagine myself a wrinkle-y old lady, saggy and scarred, twirling on the beach with my grown daughters (and their children?!) while my still-doting husband takes pictures of us.

I carry my metaphorical big stick with me and — several times a day — beat back the fear that I won’t be here for their first overhand serve, their first time riding the school bus, teaching them to drive, graduations.  I live with hope and vivacity and dreams for the future; I swing my stick to beat back the things that get in the way.  Friends and family prop me up, strength my resolve, gift me with treasures that make this life more fun, more adventurous.  God blesses me with an anointing of peace: I know He loves me true.

I am living a radiant life, but make no mistake, it is a hard won radiance.

This is me and my new purple streak.  It’s the boldness and the courage I feel so much that I felt I needed it to seep into my look.  This is quite an outrageous thing for me as I’m ultraconservative by the general population’s standards, and I rarely do something so ultra-frivolous.  I had a great salon experience at the Lunatic Fringe salon (I recommend it to my local people), and streaking my hair might have to be my new normal.  Radiating joy and courage… that’s what I’m aiming for these days.

The Lord himself goes before you and will be with you; he will never leave you nor forsake you.  Do not be afraid; do not be discouraged.  –Deuteronomy 31:8