Tag: life after chemo

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Just tell the truth

Welcome to my new, fancy, not quite how I want it blog.  We’ll march onward anyway.  I’ve ventured into the clearly superior WordPress world.  Anyway, welcome.  Welcome to 2018.  Here we are.  And I have some thoughts.

Look around you.  Really look at the people around you.  Your loved humans.  Are they ok?  Are they happy?  Are they fully operational?  Are they genuinely sharing with you about their life?  Or are they faking it, and just barely making it?

I’m someone who is usually pretty readable.  You can tell when I’m disappointed, when I’m frustrated, when I’m furious and the dragon that lives in my belly starts to huff and puff and eventually flies out and around Pittsburgh setting people on fire and eating them.  She is feisty.

But I’ve been unsettled.  I like many aspects of my life, but I’ve felt unsettled and quietly disgruntled.  And I’ve been brave enough to share a little bit of that with some of my favorite people.  And others who have been there at the right place and time.  And here’s what happens:  when I tell the truth, believing in their care for me, their acceptance of my “stuff” and their kindness…they tell me the truth too.  I believe we are all looking for some truth listening and some truth telling.

Some people, as the classic movie line goes “can’t handle the truth.”  I’ve learned this the hard way, and those people get the “I’m good, how are you?” treatment.  Rejecting someone’s struggle and shaming them back into ‘everything is fine” is a stinging poison that touches all of us and herds us into complacency and convincing ourselves that we are ok, our kids are ok, our relationships are ok our satisfaction with the life we’ve chosen is ok, our jobs are ok, our bodies are ok, our finances are ok, our church is ok, our mental health is ok, our spiritual journey is ok.  It’s all ok!  Right??  I’m ok, you’re ok.  Don’t think about any of this stuff too much.  Because if you do…it rocks the boat.  It rocks other people’s expectations of you.  It might require you to (gulp) change.

The question is, who do you want to be?  A person who bravely tells the truth about what is imperfect inside you and your life, and who listens without judgment and embraces the struggle and disharmony of others…or the person who says that everything is great and accepts only a similar response in return.

Not everyone can be a truth teller, and no one can be a truth teller all the time.  But my direction, for myself, is clear.  I’m seeking out truth tellers and truth listeners.  And I’m telling myself the truth, too.  My word of the year is authenticity.  And I’m embracing it with wild courage.

I don’t know how to fix much.  But what I do know how to do is create safe space for real conversation.  Come sit next to me, and let’s talk.  Let’s be honest about how things are going.  Let’s say the things out loud that we are scared to say.  and trust that there is no judgment or future gossip.  Let’s engage in authentic conversation where we don’t have to impress or convince or deny.  So, come on over.  I’m pretty much never more than ten feet away from coffee or a decent Malbec.  Cheers to authenticity.

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Eucharisteo 2017

Thanksgiving reminds me to point my thoughts toward the practice of giving thanks.  Eucharisteo.  This idea that Jesus had this tendency to give thanks prior to asking The Father for something.  In her fine book, 1,000 Gifts, Ann Voskamp shares her story of an early life heartbreaking loss and how she went about the next couple of decades going through the motions of faith, but holding herself back, not really trusting this God she’d had decided was not trustworthy.  Eventually, she leans into her faith, deciding God may be worth trusting afterall, and she throws herself headfirst into this gratitude experiment.

I took that ride along with her as I read the book, dutifully making my list of things to be thankful for:  my exquisite, blue-eyed fairy daughter, the way sunlight beams in and makes rainbows just when I need to be reminded of my beautiful friend Laura who left this world way too soon, the nicest Malbec with a new friend, a Steelers last minute win, the way missing someone lets you know your heart still works, perfect black heels, feeling cozy and safe, laughing until I cry, not getting a parking ticket even though I totally deserve one, my pregnant friend’s pregnant lady glow, my hair growing back fuller and better than I ever thought it would.

Yo, I don’t have cancer right now.  (Or maybe ever again.)  How about that.

When I’m cranky and frowning and sniffing the air and crossing my arms and frustrated and disappointed…I think of Ann.  And I think of Jesus.  And I am reminded to give thanks.  Not just because that’s the example we have – but because this practice…this eucharisteo…it is a powerful force, infusing us with life and love.  It fights against fear.  It fights against apathy.  It helps you to decide not to give in to bitterness.  It keeps your heart soft and ready for whatever is next.

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Almost but not quite

Yesterday, I got unplugged from my Wonder Woman Power Pack, also known as the stylishly bedazzled fanny pack that I would wear home for 46 hours, after completing my bi-weekly infusion at the clinic.  The fanny pack contained a very powerful drug that has caused me all kinds of side effects.  And as of now, I am DONE with that drug and the rest of them.

It is a strange time, the days following the END of chemo.  Partly because, although the drugs have stopped dripping, the side effects are just ramping up.  You’re thrilled to be done, but still have a couple weeks of pain and suffering to endure.  You want to bust out the champagne and celebrate but your body is just not ready, so it’s a little bit anti-climactic.  The celebrations have to be delayed as your body begins to react to the latest (last!) round’s effects, head downward, then slowly, the trajectory changes and you’re on the upswing.  Can’t wait for that feeling!!  And as the the celebrations – woohoo, have I got plans!

It’s particularly strange because the last chemo treatment tends to be the worst, so you’re headed into slightly unknown territory at a time when your brain and soul just want to shout from the rooftops, sing at the top of your lungs, paint the town red, dance it out, party like it’s 1999.  So, this period of time requires a little patience.  I remember being very frustrated by this the last time I finished chemo, back in March of 2014.  I was so ready to get back to feeling normal, and it seemed to take FOREVER.  It was several weeks by the time I really started feeling more like myself.  You feel like the worst should be behind you, but you have to come to terms that it simply is not.

Right now, I’m tired, foggy, groggy, and I have quite a significant rash spreading in new places (it’s taken up residence on my neck and eyelids this week.)  My anti-nausea meds have kicked in and are doing their job, thankfully.  My skin is so dry, it’s crazy – my elbows look like they belong to an elderly gorilla.  Some unidentified person kindly sent me some products from Amazon to help soothe these issues (identify yourself so I can thank you!!!!)  I have these crazy infected finger and toe nails – I really need these to get better ASAP so I can start really training for the relay of the upcoming marathon.  My face is flushed and feels warm.  The rash on my hands looks like burn marks.  I have some sores in my mouth that make chewing tough, but I do have some medication for that, thankfully.  Slight heartburn has started, but I have meds for that, too, so we should be able to knock that out pretty soon.

So, right now, while all I want to do is celebrate, I am forced to downshift into a lower gear, rest, recharge, and continue to let others take care of me and my life for a little while longer.  I will be fighting the side effects and impatience.  I need your love and laughs and thoughtful kindness now more than ever – send me those funny YouTube videos, words of encouragement and anything else you think I need to get me through.  The end is near, but we’ve got a little ways to go!

While all of that is a little difficult, I continue to be incredibly grateful.  I have had some wonderful people step up and check on us, making sure we have what we need to get to the finish line.  I have had thoughtful coworkers put my needs above their own, and some who have sent powerful words of encouragement and promises to keep praying.  Some food has been delivered so I don’t have to cook – thank goodness!  I have gotten cards with kind words, letting me know we aren’t alone in this.

Well, I’m pretty sure my cat is nibbling on my lunch in the other room.  His way of letting me know I’m not alone, I suppose, haha!  Thank you to those of you who have kept up the support and care in these last weeks.  We are so appreciative of you understanding that it ain’t over ’til it’s over.  Thanks for being in this with us all the way.  Love to each of you!