Jenny here.
Once again, I have contemplated this blog for months. In my head I have written pieces of it every
day. Honestly, it blew my mind, looking
at the blog today, that’s it’s been months since I wrote. I see I have even saved several drafts on Blogger along the way (perhaps I will publish some "lost blogs" that I never finished at a later time). I’ve tried to post on our Facebook page our happenings and thoughts, which felt easier. Little snippets of
life. I think this “life post-cancer” piece of
things is less written because showing the whole
of it is more difficult for me to put into words.
How do you describe the vast lost-ness and big-ness? It’s much easier to post lab results, share
the terror of crisis moments, then to find a way to relay the quietness of
living a new life you don’t quite recognize.
I know I have said it before, but it’s a whole lot of soul searching,
after the ashes settle, until you get to the work of rebuilding. I think last year, for me, meant drawing up
new plans and getting building permits. LOTS
of ground work before any construction could begin.
For some reason, the past few months have shifted us, again. We aren’t as much in the planning stages of creating, we are actually
living it out as is—still messy, still unknowns, still times when measurements
need be retaken or redone. Our “house”
is bare bones, but there are beams up…and I am starting to see the shape of
things that may come.
We have been busy. We have been out and about. December was a big trip up north to Minnesota. Time with grandma. Snow. Dogs. And many miles.
We've spent a majority of time at home though, because we love just being there. There's been some fun along the way too. We are still diggin' Fort Worth and, when we can, like to get out for a stroll, show, or dinner. Every few weeks we go to Aveda together and get our hair done. Wil waits because mine takes longer. We get breakfast or lunch, depending on the time of day. It's sweet. (Yes, we are THAT couple, and we've earned all of it!).
We drink lots of coffee. Stay up late.
It's a nice, simple life at present.
Basically it’s this:
every day gets more manageable lately.
The moments of sadness, fear, and bewilderment get shorter, less
pronounced, less intense. The joy
and gratitude has been there all along the way, but in the stillness of this leg
of things, both possess a freedom now. I can only describe it as the difference
between carrying joy and hope versus walking around with joy and hope by
your side. The shadow of cancer is there
in each scenario, the joy and hope is just as strong, but your arms are open to
hold on to other things when it's a partner, not a passenger.
Joy…hope…these
feel different when you don’t have to hold on to them for dear life every
moment of the day.
On Tuesday we spent the day at UTSW for a 6 month check up
with oncology. While Wil has had some
follow-ups with other doctors, we had not been back to BMT for 6 months. He
has had no blood work since then either.
Side note: The night before clinic this week, I had to ask hope and joy to crawl up on to my lap again. I didn’t sleep much. I wasn’t in a state of panic, but the reality and memories tend to flood back at 3am, in the dark of night. It’s impossible to completely describe. There isn’t the same fear of cancer, because it’s a known we have with us—always. But there is a deep breath, a holding of space, for what it means to look forward when you know up close and personal that the worst can happen to you. I honor that space, and I honor that feeling of held breath, because within it lays gratitude for each day and each next sip of air. It's just hard to sleep while holding it.
Walking in to clinic was surreal. Flashes. Emotions. Seeing the door that he came in through via transport 3 years ago. Have you ever felt like you were back home but...not really?
Side note: The night before clinic this week, I had to ask hope and joy to crawl up on to my lap again. I didn’t sleep much. I wasn’t in a state of panic, but the reality and memories tend to flood back at 3am, in the dark of night. It’s impossible to completely describe. There isn’t the same fear of cancer, because it’s a known we have with us—always. But there is a deep breath, a holding of space, for what it means to look forward when you know up close and personal that the worst can happen to you. I honor that space, and I honor that feeling of held breath, because within it lays gratitude for each day and each next sip of air. It's just hard to sleep while holding it.
Walking in to clinic was surreal. Flashes. Emotions. Seeing the door that he came in through via transport 3 years ago. Have you ever felt like you were back home but...not really?
After checking in, we were directed to sit in the big waiting room. I whispered to Wil, “We’re in Gen Pop now.” In the past we did all our waiting in the BMT
small waiting area. 100% masked. But Wil’s mediport
came out at the end of 2016, his counts are normal-ish, and he’s OK.
So there we sat, unmasked, with everyone else.
I looked around at
the people in the varying degrees of treatment and physical strength. A few in wheelchairs. Some with oxygen. There were all stages of eyebrows and hair growth. The homecoming part for us is that there, everyone gets it. Without words being spoken, a tip of the head or smile is enough to know...they know too much too.
It hit me hard, as we waited, the incredible miles we've come. To be here at THIS exact second.
At one point I realized I was
actually sitting in the EXACT chair that I had sat in, the first time Wil was
transported via ambulance from the SNF to clinic. He could barely sit up and wasn’t breathing
well. He couldn't speak. He had lost most gross motor control.
Our doctor’s nurse reminded me, later, that on that first meeting, I told her straight away, “this isn’t him,” and described in detail the man they would someday see when he was well again. My own version of a love song. She said to look at him now…she could see
what I had been trying to relay to them 3 years ago.
Wil has been doing well these days.
Side note: When
someone is post-cancer or post-anything, please know that “well” is a loaded
answer. “Well” often means, there is
chronic pain, there are obstacles, there is the shadow of what was…but there is
waking up daily, there is love, and moreover there is a growing ability to handle all the
hard stuff of real life. “Well” is all
of the above. And it’s a bummer to get
into specifics about chronic issues when people ask, so you start to just say
you’re “doing well.” It sure is nice to
have a few people who get that "well" is more about how you are
handling things then about anything else.
It’s a thought that has greatly impacted my own life and career
post-cancer. Well is a moving target.
But Wil is well. There
continues to be chronic pain in his feet, from the past chemo that helped save
him, and in his eye socket and head from the shingles this past fall. If you ask him, “how are you feeling?” He’ll say he is great without skipping a beat. That is choice, and is who he is from head to
toe. But strangers have come up to him
and asked if they could pray for him and his pain. He is blown away. He asks, “How could they know?” His mouth smiles, his laugh is contagious, but his eyes are often
tired. The cane has helped, but his walk
is slow. For him, he’s happy to be alive
every day. For me, each day I am amazed,
broken, and rebuilt by witnessing his pain, and spirit to carry on despite it.
He is still chipping away at classes. He’s taking courses as he’s able and working
towards some IT certificates in things I barely understand. I dare say, we talk about what life might look
like in 2 years. And it feels good. I am happy to be working more than fulltime,
which means he can take the time to be in school without working right
now. He fought that plan, and me, because of feelings that he should be contributing more, but lately has become more OK with focusing on
school and doing well. There will come a day when he
works. Or a day that he carries more of the load. Right now, school is enough, and
I am happy to be able to support him in doing it. And the dogs are happy too about having him around!
I look at him and it’s almost more than I can bear--the love
that has evolved and grown is like no other.
My heart beats fast these days, like those first few years together, but the cadence
is sweetly tempered with the comprehension of life’s fragility.
And me…for three years I have said “life is too short to use
the econ button” on my car. YESSSSS, it
saves a little gas, but my Honda accelerates at a moderate pace when it's engaged and I have places to be! The fact that I have been using it lately…well,
it says a lot about where I am with things. And the pace of life. Slower. Steady.
I don’t need to rush this part.
And it’s OK to slow down and use my energy more efficiently so I can get
as many miles out of each tank. So that, my friends, is what I am doing.
In just a few weeks I will start a 50 hour class towards a
certification I have wanted for years, and finally have the mental capacity to
do. I saved my pennies and cashed them in on me. It may take a few years to
fully complete, but I’m chipping away at little goals of my own too. I’m cooking all the time, which is centering. I’m sleeping.
I’m good at just being home. And I’m well…the kind
that encompasses it all the feels.
We left clinic with good news this week. His counts are steady. There is nothing remarkable going on. He will have the standard work up at his 3rd
anniversary on October. That's 3 more Texas Bluebonnet springs than we thought we might have together. Until then? Just
the regular doctor, as needed.
We walked away from BMT, with his only stated prescription from his oncologist, to “just take care of your wife.”
We walked away from BMT, with his only stated prescription from his oncologist, to “just take care of your wife.”
And I think...I think I will let him do just that.
Much Love.
(Pictures from our now annual Bluebonnet tour. Ennis, TX)
Once again, thank you. For sharing your love and the new reality of where you are now. You are still helping all of us learn so much. God bless you both. Taking care of each other-- yes. ❤❤
ReplyDeleteI have missed your amazing entries and am so glad to read this one -- thanks for sharing your recent journey. I am so happy that it is going in a positive direction now. As Janis said, you are still helping us learn so much. Love to you both. Michele
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