Our dear Bella's death hit us harder than could have been imagined. For the first few weeks I cried my soul out. Wil was silent. He was afraid to let in the reality of loss and break down while trying to physically recover from his chemo. We are holding together, almost 5 weeks out right now, but it's been like no other pet loss we have had before. Probably because she was in the background of every up and down of the last 11 years. Probably because cancer already had us skimming along near the surface of the floor anyway. Probably because of the sudden and tragic nature of her passing.
We had a small and lovely memorial in a favorite park for her. We lit a candle, laid flowers on the bed we carried her home in on the day we met her, spoke her name dozens of times as we recounted memories, released balloons to an audio of her barking as a puppy.
Wil cried for the first time and said he took the best naps of his life with her. It was a day of healing. Or at least beginning to move forward. Who would have known that this in your face dose of mortality would be harder than the past 6 months for us. We are pushing forward. Not because we are awesome at grief or feeling whole again, but because with cancer at our heels, there isn't the same time, energy, or process for this loss. It comes and goes and we just take it step by step. It's just truly complicated...and made life that much complicated lately.
Two weeks ago Wil had a lot of leg pain. His left side started to swell. He could hardly walk. At his oncologist appointment they sent him for an emergency Doppler of his leg. Sure enough, he had a major blood clot in his leg, causing trouble from his thigh to foot. He was started on twice daily Lovenox injections to thin his blood. They told us it was a good catch. A clot that size could have migrated north. Scary. While the swelling has gone down some, he is hobbling along and in pain with each step. It wears on him emotionally and physically. He doesn't complain, but you can see it in his face. It's common complication of cancer treatment and now he will be monitored for it closely. It can take longer to recover because gues what, when his chemo is going and his counts are low, he will have to back off on Lovenox until his body can catch up.
Last week he was inpatient for round 3B. He had been home an extra week due to low platelets and being swabbed and positive for rhinovirus. Now is when treatment timelines will be busted more than kept, as his counts don't bounce back as quickly and his body is just tired. We enjoyed one week of good WBC though...to have a break where face masks are optional, movies in public possible and even took the slight risk of ordering pizza made Wil a happy guy despite the leg pain.
Then the B round started last week Wednesday. There are many words to associate with this round that also start with B! His liver has been doing great though and his PH levels came back to normal in record time at the hospital. He discharged Sunday, on time, but not without being swabbed and cultured again due to spiking temps. His temp was normal at discharge, but as we had predicted, based on last B round, his temp spiked after we got home.
Life has gotten into an unpredictable routineness lately. We know what to generally expect, even if that means waiting and expecting the unexpected! The days skate by, one moment to the next until it doesn't. I would say it's an ebb and flow, but it's more like a glide and crash.
So much of what we do day in and day out, treatment wise, is now robotic. You either fight for "normal" or settle into the new life. You make the best of it and try to not focus too much on how foreign and removed it is from your old reality. I don't see him as a cancer patient most of the time. There are two of him though...the sick days Wil and the Wil I've always known. I'm not in a dissociative state, but I have found myself, at times, willingly keeping the "two hims" separated by the roles I play of caregiver vs spouse.
We are still breathing though. That's something. His is labored, interwoven with so much pain lately. Mine is shallow, laced and tied up with anxiety. But the air keeps moving and so do we. I'm not always the model of calm or peaceful. I'm the model of tenacity. Of getting up every day despite it all. And I'm learning to be pretty proud of embracing myself as I evolve too.
I had watched a TED talk with Andrew Solomon recently about how our worst experiences shape us. While the entire podcast was wonderful and quotable (we posted the link on our FB page a while back), a few quotes stuck out more than others.
Two weeks ago Wil had a lot of leg pain. His left side started to swell. He could hardly walk. At his oncologist appointment they sent him for an emergency Doppler of his leg. Sure enough, he had a major blood clot in his leg, causing trouble from his thigh to foot. He was started on twice daily Lovenox injections to thin his blood. They told us it was a good catch. A clot that size could have migrated north. Scary. While the swelling has gone down some, he is hobbling along and in pain with each step. It wears on him emotionally and physically. He doesn't complain, but you can see it in his face. It's common complication of cancer treatment and now he will be monitored for it closely. It can take longer to recover because gues what, when his chemo is going and his counts are low, he will have to back off on Lovenox until his body can catch up.
Last week he was inpatient for round 3B. He had been home an extra week due to low platelets and being swabbed and positive for rhinovirus. Now is when treatment timelines will be busted more than kept, as his counts don't bounce back as quickly and his body is just tired. We enjoyed one week of good WBC though...to have a break where face masks are optional, movies in public possible and even took the slight risk of ordering pizza made Wil a happy guy despite the leg pain.
Then the B round started last week Wednesday. There are many words to associate with this round that also start with B! His liver has been doing great though and his PH levels came back to normal in record time at the hospital. He discharged Sunday, on time, but not without being swabbed and cultured again due to spiking temps. His temp was normal at discharge, but as we had predicted, based on last B round, his temp spiked after we got home.
Side note: We ran into that young man I wrote about a few blogs back, the one with little support. We saw him up on the BMT unit on our way out Sunday. He had his transplant and was looking good! He too has ALL. We said "see you in clinic." No doubt we will.
It was touch and go for the first 24 hours home with Wil's highest temp reaching 100.5, otherwise known as the cutoff for an ER trip. And an ER trip always equals a minimum of a 23 hour observation/admission which is especially no fun after you've just gotten home. Luckily, the temp came down to 99, then 98, then 99, 100, and back down. Long nights of hourly vital checks at home. Sleepless nights, but I'd be sleepless anyway...I'd rather be awake at home with my hubby in our bed and our dog snoring on the couch as I binge watch 90210 and watch the clock.
This morning at his clinic appointment his hemoglobin was really low and he is already neutropenic. It explains his labored breathing (you don't get adequate oxygen when your hemoglobin is low) and the fact he spent most of yesterday in bed. If you asked him, he would say he's tired but OK. You won't hear complaints. It is agonizing to see him struggle along even for short distances. Walking into to clinic was a real task and feat today. We will be back for more blood tomorrow morning, and we would guess Friday as well for blood and platelets.
Hours of whirring machines, ticking transfusion channels, and watching him sleep as someone's life force is pumped into him. I wouldn't and couldn't ask for anything more. I'm determined to be by his side for as many of these hours as I can.
Life has gotten into an unpredictable routineness lately. We know what to generally expect, even if that means waiting and expecting the unexpected! The days skate by, one moment to the next until it doesn't. I would say it's an ebb and flow, but it's more like a glide and crash.
So much of what we do day in and day out, treatment wise, is now robotic. You either fight for "normal" or settle into the new life. You make the best of it and try to not focus too much on how foreign and removed it is from your old reality. I don't see him as a cancer patient most of the time. There are two of him though...the sick days Wil and the Wil I've always known. I'm not in a dissociative state, but I have found myself, at times, willingly keeping the "two hims" separated by the roles I play of caregiver vs spouse.
But there are still moments, in between, in silence, that I look at him. Slow, gimpy walk, hairless head behind a blue mask, pained eyes, irritated and bruised chest port from multiple pokes to access him every week...there are times I still see him with fresh perspective. Neither patient nor husband. I see him for who he really is now...a new person...my Wil who also has cancer. I remember then all I have to lose and all that I love about him, all that he is becoming along the way, even in midst of unthinkable experiences and unfathomable joy. And then emotion overflows through the worn out ducts of my eyes. My heart expands and aches from the stretching that is required to experience him as he is now in this middleness of being. Robotic is safer sometimes, yet I know I am anything but a caregiving machine. I'm a real girl. A real wife. Capable, afraid, and scarred. I'm living in a new middle too. I sometimes wonder if he experiences my own middleness, the new duality of me.
I have heard it said before that scars are the best beauty marks. They prove we are still living.
That I feel the enormity of this journey...That I feel scared beyond words...That I feel perpetually sorrowful...That I often can't find the words to express myself....That I wouldn't chose not to be here either...I think this is the journey of the person next to the person with cancer. I'm not the one with leukemia. Yet I feel some sort of bone deep exhaustion myself lately as my head swims with the two outcomes here: life with Wil and life without Wil. Young enough yet old enough to know I need to build a future for us...but also keep me surviving in the unthinkable.
I've moved into a new office space. I'm trying to grow my career as I care for him. Trying to keep connections with others as my life revolves around his health. Trying to care for myself so I don't break. It's just a lot of stretching. Every day.
As we draw closer to the end of this middle phase of treatment, we talk about fears more than ever now. The next steps are a little unknown. More chemo? A transplant? A clinical trial? The next steps need to keep him in remission without killing him. We have pages of documents to read this week to make "informed decisions" about how we want to proceed, given the risks and stats. This isn't usually a disease people recover from if it comes back. Only 16% of folks get a second chance at remission. It's a feeling of now or never. Of holding your life out on a limb and trusting. We have a lot to talk about in terms of moving forward and what we want for life.
We are still breathing though. That's something. His is labored, interwoven with so much pain lately. Mine is shallow, laced and tied up with anxiety. But the air keeps moving and so do we. I'm not always the model of calm or peaceful. I'm the model of tenacity. Of getting up every day despite it all. And I'm learning to be pretty proud of embracing myself as I evolve too.
I had watched a TED talk with Andrew Solomon recently about how our worst experiences shape us. While the entire podcast was wonderful and quotable (we posted the link on our FB page a while back), a few quotes stuck out more than others.
"Live out loud."
"Forge meaning, build identity."
"If you banish the dragons, you banish the heroes."
"If you banish the dragons, you banish the heroes."
So here we are in the middle of everything. You can't grow in courage without obstacles. You won't find the person of valor inside without fire. Stop waiting for meaning, let the flames melt you, and shape your experience into something wonderful! We are more than a cancer couple. We are flawed and crazy, loving and snarky. We are forging ahead, one step at a time.
Solomon ended with: "And then invite the world to share your joy."
So I'm back. Here. Sharing. Even on the days that are complicated and not so pretty. Because behind all this pain is our fight to hold on to joy. It's always my hope that you're sharing and feeling it too.
Sent from my iPhone
Sent from my iPhone
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