Music Monday | Brand New Sun – Jason Lytle

On Wednesday, it will be the twelve-month anniversary of when I took G to the hospital for strange, stroke-like symptoms that turned out to be brain cancer. The next two months will be filled with dates like these; that time he had brain surgery, the time he came home from chemo but developed a severe septic infection and had to be placed in a coma and his organs started to fail, that time after he woke up from the coma but couldn’t walk or talk or move…

I am not sure how I will process the next few months. I didn’t process any of these events or emotions last year; instead, I woke up every day and simply did the things that needed to be done without thinking about anything else.

Eleven months ago, I took myself to the emergency department for heart issues and chest pain while G was in hospital. The triage nurse took my blood pressure, looked at me and said, “Oh, sorry, it hasn’t worked–let me take it again.”

I asked what it was and she said “It’s 158/123”, which put me in the hypertensive crisis category.

“No, that’s right,” I said, “based on what I’m feeling.”

My ECG was normal, even if my heart rate was elevated. They diagnosed me with stress and suggested a follow up a few months later. That ECG in January was normal, too. But now, even though the stress has dissipated, my heart is still palpitating and thudding a couple of times a day. I still have chest pain, multiple times a day. So I’m typing this with a holter monitor hooked up to my heart. I’ve pressed the button several times for mild pain but I haven’t had a bad episode yet. And I don’t think 24 hours is long enough to register one. A month ago, I’d have had three-four episodes by now. A few weeks ago, the palpitations were so intense I had to pull the car over on the side of the road and wait until they had passed. But now, they’re only happening every few days so I’m sure we won’t record the problem–tests are often ridiculous that way. Unless there is more happening that I don’t actually feel?

So, as we approach what I’m calling “anniversary season”, I am going to focus on sorting out my own health and being grateful that G is still here–currently cancer-free, progressing in rehab, and making just as many terrible jokes as ever. Maybe we’ll get our 40 years together, after all.

You should hold my hand

While everything blows away

And we’ll run

To a brand new sun

Music Monday | It’s OK – Nightbirde

If you haven’t seen Nightbirde’s golden buzzer performance of this song on America’s Got Talent, are you even on social media??

A couple of weeks ago (yes, it’s taken me this long to make time to post) I overheard G listening to something on his phone in another room. I wasn’t able to make out the words, just a soft melodic voice floating into the kitchen from the lounge room, and as I walked in to where he was sitting to find out who it was, all I could hear was “it’s ok, it’s ok, it’s ok, it’s ok if you’re lost, we’re all a little lost and it’s alright…”

Later that night, I googled it for myself and sat in bed listening to the voice of someone still battling cancer telling me that it was alright.

When G was first diagnosed with a rare and aggressive lymphoma last year, I spent hours telling other people that bad things happen to good people and that there is no rhyme or reason as to why some people develop cancer; one in two men will develop some type of cancer in their lifetime, as will one in three women. All the while, I was running through a list in my head of all the possible ways I was responsible for his cancer–everything from physical (I must have weakened his immune system by giving him HIV even though I don’t have HIV), to spiritual (God is punishing me for not believing in God anymore), to psychological (if I don’t perform certain rituals and compulsions then bad things happen to people I care about).

Being responsible for it meant that it was possible that I could resolve it, fix it–maybe–or at the very least, I was to blame–and that life wasn’t as uncertain as it felt when the outcome of this disease was entirely out of my hands. It’s not that I’m a doctor. I just feel like I should be able to fix everything for those I love. Because although G was the one with cancer, he wasn’t the only one impacted.

In Nightbirde’s AGT introduction, when she explains she still has cancer in her lungs, liver and spine, one of the judges says “oh, so you’re not ok?” and she replies “not in every way, no.” And then she says the thing I’ve spent the last year trying to teach and learn at the same time…

“It’s important that everyone knows I’m so much more than the bad things that happen to me.”

Music Monday | World Spins Madly On – The Weepies

We spent today in Melbourne for an appointment with the infectious diseases specialist who is treating G’s hip infection, for blood tests, x-rays and an MRI. We will get those results next week.

I am tired. It takes about 12-14 hours a day to do everything I need to do to care for G and get all the jobs done around the house. And that’s when other people aren’t making extra work for me.

It feels like others are able to just go about their normal lives. Australia is largely protected from the worst of the pandemic and these days, restrictions are relatively relaxed. People are moving about and moving on with their lives. And I am standing still.

I let the day go by
I always say goodbye
I watch the stars from my window sill
The whole world is moving and I’m standing still

Music Monday | To Build A Home – The Cinematic Orchestra (ft. Patrick Watson)

We are home.

After seven seemingly endless months, we are finally home.

Together.

There is a house built out of stone
Wooden floors, walls and window sills
Tables and chairs worn by all of the dust
This is a place where I don’t feel alone
This is a place where I feel at home

‘Cause, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it’s time to leave and turn to dust

Out in the garden where we planted the seeds
There is a tree as old as me
Branches were sewn by the colour of green
Ground had arose and passed it’s knees

By the cracks of the skin I climbed to the top
I climbed the tree to see the world
When the gusts came around to blow me down
I held on as tightly as you held onto me
I held on as tightly as you held onto me

And, I built a home
For you
For me

Songwriters: Jason Angus Stoddart Swinscoe / Patrick Watson / Philip Jonathan France / Stella Page
 
To Build a Home lyrics © Kobalt Music Publishing Ltd., Intrigue Music, LLC

Deterioration

I wrap myself into my quilt like a burrito. I’m sleeping on the couch which, while not overly comfortable, doesn’t induce the same anxiety as having an argument with myself about going to bed. Instead, when I become sleepy, I close Instagram, blow out the candles, turn off the salt lamp and roll over.

I am not sure why going to bed holds such angst for me but it always has. At least, until I met G. For the first time in my life, I looked forward to going to bed because I felt safe. Held. Loved. I try to replicate this feeling now while he’s not with me but the best I can do is to stay awake until it is impossible not to sleep.

In the last week, there has been another infection, two surgeries and blood counts that still aren’t following the predicted path. My OCD has fixated itself on his illness and now intrusive thoughts of blame drive all manner of compulsions, day and night. If I haven’t given him covid, I must have given him cancer.

Life is random and unfair, I tell others. Bad things happen to good people for no reason. And while I almost believe that is true,  intrusive thoughts still swirl that this is somehow my fault. My punishment. For what exactly, I haven’t determined. It could be a range of things and my brain is providing plenty of options. As a result, my anxiety is out of control. Today I had a telehealth appointment with my GP who has recommended blood tests, an ECG to check my heart which has lingering issues from my years of being underweight due to anorexia, and some medication.

“This is the only prescription I will give you for this medication,” he tells me, “due to it having addictive properties. You must be sparing in your use but it will help with the panic attacks and anxiety. I will give you a second prescription for something that you can use long term but the effect won’t be noticeable for two to four weeks.”

It’s been seven years since I took medication for my mental health and while I suspect I need it, a new fear has surfaced during the pandemic and my husband’s illness which will likely prevent me from doing so; I cannot take any medication for fear of the masking of covid symptoms or because I may have a bad reaction requiring treatment. I will no longer even take paracetamol or ibuprofen, pain killers I have taken for years, especially when I have severe cramps during my period but now I am afraid they will mask the symptom of a fever and I will never know if I accidentally acquire covid. I will not take new tablets, not even vitamins, in case they cause some sort of reaction where I have to present to a hospital because the more places I go, the more likely I am to come into contact with someone with covid. My anxiety is pushing me towards never leaving my house again, unless it’s to travel to the hospital where my husband is having treatment. Home. Hospital. Home. Hospital. That is the extent of my world right now.

And all of it seems justified.

Music Monday | Here Comes The River – Patrick Watson

It was my birthday a few days ago. Birthdays in 2020 are something different, aren’t they? I am sheltering in place in a small apartment in the “covid capital” of Australia aka Melbourne. But thanks to our state Premier’s leadership, the Chief Health Officer’s medical expertise, and my fellow Victorians (largely) doing the right thing, our daily case numbers have reduced significantly from more than 700+ cases a day a few weeks ago, down to less than 50.

But this isn’t where I was supposed to be for my birthday. Earlier in the year, I booked annual leave for the next few weeks. I had planned to be in New England, traveling first before arriving in Maine for the Camden International Film Festival with a friend.

But 2020 looks nothing like the plan I made in January.

Instead, I spent my birthday here with G, before having to rush him back to the hospital when a pain in his hip prevented him from walking. Scans indicated another infection. The news of a temperature spike after a procedure to drain fluid from the infected joint whacked me back into mid-August when he developed sepsis after his first round of chemotherapy dictating that he spend weeks in ICU in a critical condition.

We lurch from crisis to crisis, barely recovering from the last before a new one begins, with the original cancer somehow just a low background hum. Tonight, his temperature has settled. He is being flooded with strong antibiotics. Fluid is being drained.

I knew the cancer treatment and chemotherapy was going to be intensive. But nobody told me that it was going to be this hard.

Nobody told you that it was going to be this hard
Something’s been building behind your eyes
You lost what you hold onto
You’re losing control
There ain’t any words in this world that are going to cure this pain
Sometimes it’s going to fall down on your shoulders
But you’re going to stand through it all

Here comes the river coming on strong
And you can’t keep your head above these troubled waters

Here comes the river over the flames

Sometimes you got to burn to keep the storm away

Today, there is also a bonus song; I played this song as part of a meditation last night to remind me to get up, always.