Cancer Wife Ninja

Squabbles

We've squabbled today and I don't like it.

I mean, nobody LIKES it when they're fighting. We are both stressed and I cannot get my body to exhale. I cannot imagine Ben's pain; he's in bed a lot. Neither of us have left the house in 2 days. I tacked a calendar on the wall today and said 'This is for all your cancer appointments'.

 

And then I wrote 'Colon Biopsy' on the 19th.

Ben said, 'Oh, that's liver biopsy' and I said, 'No, it's colon.' and we battled...

...and yes, he did text me the word 'liver'... but he also text that it was 3 hours and in my recollection, the 3 hour one... is for the colon.

 

I tried to explain ....but how silly...explain what? That I think I am right.... 

​​

I stopped myself and changed the calendar: colon LIVER

I hate mistakes on this calendar.

I hate that I got it wrong.

 

BUT did I?

I hate that I want to be right. It's such a little thing, but I'm mad that I'm making mistakes already.

 

I silently google 'liver biopsy' and it says that it doesn't take long and they only use a local anesthetic. Ha, I am right.

But it's not worth the fight.

I don't have the energy and it's pointless.

 

And, no matter what, we have a 3 hour appointment that day.

 

I recognize his frustration with me; when I have too much going on, when my listening is not on point, when I'm distracted with electronics or rushing, only paying half attention... it's not a new frustration... BUT it is a new topic.

 

Cancer stuff. Dammit. I wanted to be so perfect at record keeping. A ninja.

 

I even created a shared Google Sheet with doctors names, phone numbers, departments.

I made a tab to track medications, doses and what they are for.

It IS important for me to track, know and understand these things.

And I've already slipped up. ​(Possibly... because, truthfully, I still hope that it IS for the colon on the 19th, and not the liver...so that I am right and he is wrong)

 

Referral Angst

Social media connections ... led me to speaking to a Colon specialist in Vancouver.

I do hate that we are waiting for biopsy- liver and colon.  Waiting is the worst and we already know what's up.

I made an appointment to meet with Dr. Family with one goal: Get a referral to Vancouver. We will drive anytime! ​

 

So, for my 2:30 appointment, I showed up at 1:06 pm and give Jennifer the eyes, and said... 'What about now....?' ​

He was ready for me immediately. There is something very comforting in that. (Or, I'm incredibly charming and Jennifer can't resist me... but in any case, Dr. Family saw me right away.)​

 

Nine days different would not make a difference in his diagnosis and treatment plan, I am told. But nine days makes a difference to ME. What will I do? 

It was comforting to talk about our timeline.

​

I also shared my concerns about Ben's eating- or lack of eating, and how much he was laying down.

Couch, bed, couch, bed. Constantly.

I also worried that his pain was not under control- we had just upgraded to Tramadol but prior to that I didn't realize his pain needs were NOT being met.​ Ben is so calm and gentle, he holds himself together and it's hard to tell if he's in pain. He also doesn't ever complain. Ever. (like seriously, ever). ​

 

Dr. Family talks with me for 20 minutes, then makes an 'appointment' for Ben in the next 20 .. if I can make it back that fast? Sure can.

​

I text Ben, then rush to get him. We return to Dr. Family together and review the current timeline, and touch base with his pain meds. ​

I cancel our Vancouver consult, and feel much better. ​

 

Colon Biopsy Booked for March 27.​

On the way out of Dr. Family's office, I say to Jennifer, 'I can't believe I'm excited about butt surgery'.

And she laughs. I smile because my mission is accomplished. Even in the dark time that we are in, I want to make people laugh.​I don't mind a few looks of sympathy and understanding... but a girl can only handle so much.

 

​Mental Game It's a mental game. Dr. Family wants to know where our minds are at.

 

He is also worried about me.​ Can he refer me to support counselling? I tell him a friend has already connected me with a cancer support group (Thursdays at 3:30 in Vernon). Last week I asked if Ben wanted to go with me. He said 'no' and neither of us went. I'm trying to decide if I want to go. But in the meantime, I tell him, no thank you. ​I know there is worry and anxiety within me. Of course there is. I still feel it in my upper body- physical stress.

 

But, the support I have around me is truly incredible. I want to tell Dr. Family all about my friends and family, and my past experiences with cancer. It is VERY different than the past, yes. This is not my aunt or mom or cousin.​This is my husband, my lover, my buddy (he hates it when I call him buddy! I might say, 'Thanks, buddy' if he makes me popcorn or fills up my car.. and with chagrin, he always replies, 'You're welcome.... pal...' (and I howl every.single.time he calls me 'pal'... why do I love it so much...).

​

​We both assure Dr. Family our mindset is good, positive and strong.

I am relieved to hear the words from Ben out loud in that moment as well. It's just reassuring. I could listen to him say, 'I will beat this cancer.' EVERY.SINGLE.DAY and not get tired of hearing it.​ I drive my buddy home with a huge smile on my face. 

 

10,000 New Friends

I just made 10,000 new friends.​

Lisa found a 'Colon Cancer Support Group' online and I have joined it.​ It's full of stories of positive, encouragement, journeys. It's people sharing, listening, caring and writing. So far, I've asked about foods, weighted blankets and colostemy bags.

 

​​Only Three Ways

​Dr. Surgery mentioned 6 months chemo.

Dr. Family mentioned 6 months chemo.

Today, I ask Dr. Family to tell us more about that potential journey.

I am scared that Ben does not want chemo and would not take the chance on it. I said 'I know Ben doesn't want that poison in his body, and is worried about it being more harmful than good.'

 

​Dr. Family said there are 3 ways to treat cancer:

1. cut it out

2. radiation

3. chemo

The natural things you can do ...can help your health. Your health is important to withstand the chemo, but for cancer in today's day and age, those are the 3 ways. ​I said, 'What about the stories about natural healing? or miracles?' ​He said alternative treatments can't cure your cancer, but they can help with relief and symptoms. He was very clear and strong in his explanation and I was grateful for the precision. 

 

Ben said he would most likely do chemo and I feel a wave of relief wash over me.

 

​Burnt Grilled Cheese ​

We have digestive enzymes from a friend. Hopefully this will help break down his food so he can eat in peace.

In peace. His body hurts every. time. he eats. 

 

I'm thinking of starting a 'Clean Liver' diet along with Ben.

 

Dr. Family said it certainly couldn't hurt (as long as we get our nutritional needs met within it).​We are eating separately now, and it's not working. I don't know what he is eating. I cook but he's not hungry then, or it isn't what he feels like. And I'm hungry at strange times, too. I'm tired and it's hard cooking for me, him, me, him, me... and I am so tired of eggs on toast.. which feels like the only thing I can remember how to cook at the moment.​

​

I tried cooking grilled cheese, but burnt it. Black Burnt. Not a little, not an edge, full side dark black- not even scrape-able! I don't think I have successfully made a grilled cheese sandwich in weeks, to be honest.​ I had one on the pan and flipped it... golden, perfect. Ben shot me a grin and quipped, 'I don't think that is black enough for you... ' and in my protest, arguing my grilling skills, the smoke detector went off. Side 2= burnt black. He shook his head with a grin. Another one bites the dust. Why can't I focus on one simple task? (Also, his grin is so cute, even if he is too skinny) 

​

In related news, I talked to my cousin Stacy- another comforting chat.

And for once, it wasn't totally focused on cancer.

 

As a matter of fact, it was about grilled cheese. I reminisced about soup and grilled cheese lunches at her house when I lived in Camrose. She confirmed, 'I am an incredible grilled cheese-maker. Even Erin only wants me making them when we are the Lake! Nobody does them like me,' she beamed. We discussed success factors: pan, heat, commitment to buttering all 4 corners.

 

I love my family for this. Grilled Cheese excitement.​(also, nice moves, Erin... how do I get my sisters to take over in the kitchen... I'm onto your strategy now.).

 

​Our Affairs Are In Order ​

We booked an appointment to create our will. Hoping, of course that we don't to have to address then for 33 more years, but it's done. We are responsible, organized and in charge of one another adults. ​I do wish we had done it sooner. But only because it was a difficult time for Ben.

​

From the drive there, appointment and drive home the entire thing was just under 3 hours. But his pain set in and once home, he took pain meds and went to lie down.​ Why didn't we bring pain meds with us? (We are 'as needed every 4 hours' at the moment)​

 

But it didn't occur to me.

Until today. ​

When we needed it.

And I did not have it.

I will need a bigger purse. ​

​

Brian IN Vegas

​Now, I answer all my calls. I don't know what number might be coming in or for what reason but I don't want to miss anything.

Just in case. ​

'Hello?'

'Hello, it's Brian in Las Vegas! Have we got a deal for you!' came the jubilant voice.

'Oh, Brian-in-Vegas, you called at just the right time!' I said.

'I did?' he replied, thrilled. ​

I told him I could use some cheering up, that my husband had just been diagnosed with cancer and even though I would not be booking, no matter what... he was quite happy to still share. So, I let him tell me his entire deal. 4 nights, 3 days, shows, meals, bring a friend. It was a nice distraction and sounded like a great deal (he was right). After he finished, I thanked him for telling me all about it.

 

I confirmed that I wasn't booking it. 

He genuinely listened and shared how he lost a friend not too long ago to cancer. We talked easily about life and not-fair and cancer. ​Brian-in-Vegas did not seal the deal, but he spent 42 minutes on the phone with me. I shared a lot but somehow the conversation with Brian-in-Vegas was a breath of air.

 

Just different.

Maybe because he's not 'right in' my circle?

Tough to say.

It reminded me of a quote I love 'Do Small things with Great Love'. ​This was a small thing, but it felt great today. ​(Also, if Brian-in-Vegas calls you, book the damn deal. Do it for me.) ​

​

Stronger Drugs and MIA Ninja ​

The tramadol is no longer effective.

We had a prescription for Hydromorph- already filled, ready and waiting with these instructions: ​If the tramadol doesn't work, stop using it and move to hydromorph.

That was yesterday.

I wasn't here for it.

For the change.

For the drug decision.

I realized something. I feel like I should be involved in every decision, every action, every motion. ​Is it because I care? Or because I like managing things? Even control.. to be in control. ​I'm scared of missing things, of not keeping up.

 

I get messages daily still with advice and ideas.

I want to read them all.

No, that's not true... I want to INSTANTLY KNOW and UNDERSTAND everything that is being sent to me. I want it to get into my brain with some kind of osmosis. But my brain is full, and weak right now.

I can feel myself struggling... with conversations, energy levels, household tasks and I hate it. ​

I feel like I am behind in preparing for a big test. A huge midterm. And it's midnight. And I haven't even started to study.

 

And it's not who I am. A+ student. I need the gold stars. I want to be top of the class. Even in this.

I feel like I'm in the wrong room, at entirely the wrong time. And the test time is ticking down. ​

 

So, when I have to ask about the change in meds, it kills me.

I wish I was here for it. I don't feel very Ninja today.

I feel like a stunned meercat. Who was M.I.A.(missing in action) today. ​

 

Sympathy Pains

​Last night I had an upset ..middle... I can't really say stomach because it was so much more. It's not that time, but my ovaries were scrunched in pain, my lower back hurt and I was in the bathroom more than a few times. The Milk of Magnesium that Ben attempts to use for his stomach was for me now. I feel nausea and tired.​

Still tired.

Always tired.

When will I feel rested again?

I am so tired of being tired. 

 

I don't have the answer, but I am ready for rest.

I am ready to uncoil.

To relax.

​

I know it's a process, I know I can't untangle the web of physical events this evening and I do my best to breath through it, and also to allow it.​I know I need to take care of myself. To be able to care for Ben. To care for us both. But everything feels so hard, still.

 

Today is March 12 and I still cannot believe how our lives have turned. ​

​

The Hardest NO ​

Social Media VS Privacy. We do not agree with the events surrounding the fundraising. I feel Ben's fury with me as we continue to social share, continue to fundraise. What started as 'permission' for a Go Fund Me has now grown into a Burger/Beer night and Bottle Drive as well. I feel like we asked for an inch, and now took a mile.

 

​He told me to "Take it all down".

​

I was silent for a a long pause, then whispered, 'No.'

​

It was the hardest 'No' of my life.

I'm wracked with guilt and feel awful.

But I'm in this too.

And he's not working.

And my work is slow.

And I know he wants to be private.

 

It's ironic- he has not been on ANY social media EVER ...until this January. I encouraged him to start a Facebook page for 'Fuller Greens' (his dream business, he's been working on green houses, grow boxes and seedlings to sell)- to use the social networks for his gardening business... in which he wants no personal photos. Just plants. I'm helping but it's hard to edit him out... certainly we don't agree on this aspect of being social online. We are polar opposites, in fact. 

​

So, this barrage of sharing is additionally hard- because he is very aware of the extent.

Part of me wishes he just did not know. (What you don't know can't hurt!).. but that is not how we roll... so either way...

​

in the end, he hears my fears, hears my worries and silently agrees to let the fundraising stand... but it's painfully clear how much he dislikes it. And that kills me. 

​

Bottle Drive at Chasers

​We have a bottle drive set up at Chasers.

Sort and say, 'This is for Ben Beats Cancer' and your returns will be added to our account. ​

 

It’s A Crying Shame

'Just be normal,' I chide myself.

I realize I am hovering, and worrying, and pestering Ben constantly...to see how he is.

I vow to resist, to let us go about our daily life without harassing him so much, but it's not easy. I know I'm on edge, I know I'm worried...and I even feel annoyed with myself.

He is different.

Or does it just seem that way... because, well, things are different now. He's tired, hungry and on strong prescription drugs. ​

 

Last night we had a hot tub together.

I admired his hair and then questioned, 'Maybe when you lose your hair, I should shave my head. In solidarity.

People do that.'

​

With no hesitation he replied, 'No, don't shave your head.'

 

I smile, because... I don't really want to lose my hair either. I mused, 'I wonder if you will also lose your leg and chest hair....'

He grumps, 'Probably. And maybe you should shave your legs.'

 

I am stunned.

We have been together a long while and I have never really shaved my legs.

I go up and down with the occasional summer party but never in winter and it just never mattered to me.

Or to him... or so I thought.

I have asked in the past if he cared, and he's only ever commented that he doesn't like them 'prickly'. (me neither). In fact, one of the things I love the most about my sweet husband is how strongly he loves me just.as.I.am.​

 

So, now my feelings are hurt but I don't say anything. ​I shower after the hot tub and make an attempt at my legs, but my heart isn't in it. It takes too much effort, water is drowning me in the shower, or is it the tears? ...and without glasses I really can't see how effective my work is. I don't mention it at all, but later when I get into my pajamas I notice my handiwork.​ It looks like a miniature-riding-lawn-mover took a joy ride... but lost interest half way through. 

 

I hate the person that invented leg-shaving.

 

​(edit to add: I spoke with my sister, Angela about this and she was so wonderful. In our call, she reminded me of the impact of drugs and how hard it must be for Ben to be navigating this. She assured me she was there for me and she could take my rebuttal about shaved legs or whatever trivial thing I might be stewing on (big things, too, of course) but it was like a light went on. I literally *forgot* about the effects of narcotics playing a role in my sweet husbands temperament. (Patience, grasshopper, patience.)

 

​Up With People Alumni Loving Me ​

TWO wonderful things happened...both from my Up With People Alumni (I traveled for a year with this group in 1996). ​Amber, a friend in Denver, Colorado just ordered our supper. I'm not sure that Ben can have it, but I can and it's a relief tonight.

 

She said she read my post about burnt grilled cheese and really wanted to come make me supper.

She's a little far away, so this was an amazing gift instead.

 

She brightened my day. ​Katia, a friend in Quebec called me on Facetime as well. It was so good to see her face and hear her voice. It's been years since we talked but we have always had a beautiful connection. She also brightened my day.

 

​Ladies Day with Kris & Your Life Sparkles ​

Today was Ladies Day in Kelowna.

Today was amazing.

Today was difficult.

Today lifted my spirits and brightened my heart.

Today exhausted me.

Today, I got to do what I love and not focus on cancer, Ben, worries. ​

 

Ladies Day and Thoughts of Uncertainty

March 15 ​

Today is the day after Ladies Day.

I am exhausted from a full day of presenting, energy and creating an amazing day - all while I have a weight on my shoulders. The weight of cancer. The weight of the unknown. ​AND the additional weights that I am slowly becoming aware of... our nutrition is not at it's best, our physical activity has dramatically decreased, our joyous times are quieter, shorter...because both of us are under the weight.

 

And tired.

Always tired. 

​

Yesterday at the Event

​It's difficult for me to put it all aside and proceed in my joyous Ladies Day. I share with both my sisters my thoughts of uncertainty, they lift me up and inspire me. I confess to Lisa that I do not know how/if/when I would mention ...Ben, cancer.. or if I should at all.

 

After thinking about what our day is meant for (Ladies! Empowerment! Joy!)... I decisively tell Lisa, ' I will not share it. It will be tricky, but I feel it's best.

 

​One of the reasons it is so hard is the fact that in our presentation, I talk about Loving Yourself and Being Authentic.... and I use personal examples.

How authentic can I be without telling the crowd about my latest news?

But I don't want to use my work as a crutch, as a sympathy invoker. I am content with my decision and we proceed with our day. We stick to our agenda.

 

Fairly early on in the day, my sister whispered to me, 'I feel a bit off. Sorry I'm not doing enough.' and I immediately stopped her.

I am genuinely shocked. She has no idea how much - today, today especially -her courage to stand beside me means more than she will ever know.

That as I talk, share, love and give my gifts of storytelling, laughter and connection, she is at the heart of it for me today.

​

She is the reason I don't unravel.

She is the strength that I am leaning on... and I wish with all my heart she could feel deep within my being ...to truly know how awesome her gift of holding me up is.​

 

The day is a wonderful success and at the end of the day, Lisa shares my truth.

I feel unburdened and now the gift of love in this room of women is given back to me.

She shares to celebrate my strength, courage and bravery.. and presents me with a beautiful hand crafted gift.

It's a mosaic glass art with a heart and the word 'LOVE' on it.  I get hugs, words of love, advice and encouragement. The day for YOU is also now, the day for ME...and I am beyond grateful. ​

 

Corona, Walmart & That Grin ​

Corona Virus is upon us- we are washing hands and staying home... but we do need a few things. Ben asks if I want to go to Home Depot and Walmart with him.​I am so tired, beyond tired. All I want to do is stay in pajama and curl up with Mia... but it feels like I am supporting Ben in all the wrong ways.. swinging from 'mothering him' to 'walking on eggshells', there seems to be no happy middle, no normalcy.

 

So, I decide to take this moment and say yes. ​

We shop in Home Depot and for a moment, things feel normal. I like watching him flip through cedar boards, searching for the right ones. He takes his time, worries about it being plane, level, clear.

 

​At Walmart, I am surprised by items missing on the shelves- soups, noodles and of course, toilet paper. We had heard about the hoarding, but it's different to see it first hand. With the exception of those 3 areas, the rest of the store is fine and everything seems normal. ​At the till, a kind face- Gloria (I used to work her) came over to hug me, and share her success story. She, too, had colon cancer and is now a survivor. We hug and she says she will pray for us. And I thank her. ​

 

When we leave, Ben asks who that was and why she wanted to pray for me. We don't pray or go to church, and I replied to Ben, 'She just wanted to offer a small kindness. It doesn't hurt me to accept her praying, so I thanked her.' ​He shot me that grin, the one that melts my heart and quipped, 'Well, I wish she would have prayed for me BEFORE I got cancer. Put in a word earlier.' ​In that moment, my heart sores. I'm in my sleepy ponytail, no make up and camo-sweat pants at Walmart with with my husband, and I can't remember when I last felt this good. I just love that he made a cute joke, I'm so glad I joined him on this amazing adventure today! 

 

Dog Tired and Out of Meds ​

We get home from Home Depot and Walmart.

I am still dog-tired.

We were only gone for 3 hours, but still. ​More so than usual.

 

I laze about the house, no cleaning or organizing.

It's ​Sunday evening.

Suddenly, Ben tells me he will be out of morphine at 4am. He takes it every 4 hours... and often that 3rd hour is grueling. If he runs out at 4am, that leaves nothing for 8am. The clinic opens at 8:30am.

 

I feel so much stress for this miss.

 

We started those meds on our own accord (with instructions, but to 'upgrade' when the last prescription felt useless)... but it never occurred to me to count ahead. Stupid wife. ​A sleepless night as I stew over Ben's meds and pain. I know we can get into the clinic first thing, but I hate that there will be a gap. ​

​

No More Managing, Ninja ​Monday.

No meds. I am up at 7:30. I am anxious.

I try to pre-empt how I will navigate this with Ben. ​

Trying to be casual, I ask, 'What is your plan for pain medication?' He says he will call at 8:30am.

​

I bite my lip, but only for a moment.​'I think we can just show up...' and he says we need an appointment. But I know that is just not true.. that we have been told when it comes to pain, not to wait. Solutions are at hand and he should not suffer!​

 

At 8:20 I start the car. I see no action, but I know he likes to have an appointment, so I call the clinic for good measure.

As I am on the phone, he shoots me a look and says that HE was about to call.

He is annoyed and I hate myself in that moment.

On the way to the doctor, he fumes that he does not want me to be the middle man.

​

He does not want me to come with him anymore.

 

To my credit, I am silent. ​But I am also stunned and hurt. I don't know how to reply. I mumble, 'Sorry...' and he interrupts, 'Don't be sorry. Just don't do it.' I can't remember when I've seen him this mad. ​We go into reception and take a seat. I feebly mumble, 'I would like to come in with you, but I will stay here if you prefer...' (but I know I don't mean it, not really... I so badly want to join him...).

​

The nurse comes and we go in together.

I am silent in the meeting, for the most part. I am surprised with the updates he offers Dr. Family... and sad that I don't know them first. ​

 

When we get home, I know I must address it, but how.

I write to my 10,000 Friends my angst and hurt and feeling lost. There is no real advice, they just offer love, which is fine.​ I am nervous but I want to help more than be shut out so I take a breath and go to my husband. ​

 

I say to Ben, 'Can I try to explain myself?' and when he nods, I continue. I explain that my only other role with cancer was with my mom and she ADORED the role of 'Big, Needy Baby'. She relished in me taking her to everything, writing notes, organizing appointments, managing meds and meals. And I, to be honest, thrived in managing it. I felt useful, helpful and needed. It was exhausting, but it's how we rolled.

 

So, now, I'm experiencing something different and I have not adjusted my sails. But I can. 

'Please let me stay with you,' I request- standing tall, but gentler now, 'I will change. I can do it better. I just want to be in the room.'

He listened.

 

'Even for the little things. Of course, I will take you to all surgeries and appointments...but I also want to just be there...for everything.... I promise I will do it better'. A wave of relief rushes over me as he slowly nods agreement. It is a silent nod, a testing nod, a nod that means 'just this once' and I understand the fate of my future ninja title lies in this one brave act.

 

To love him a little quieter, to be a silent supporter, to let him lead. ​

 

Pity Party for One

(March 17)​

After starting the day with bickering, I am not happy with myself.

I am not happy with Ben either, and I just want to go...to get out of this house. ​It's tricky because I also just want to be home. I have errands to do, so I force myself to get into my car. I drive 30 minutes to Vernon but on the way get into a fight with my sister on the phone. My day has started horribly. ​I feel lost and alone. I pull over on a residential street and have a long, hard cry in my car.

​

I hate cancer, waiting, fighting, crying. I am so mad. I just hate everything about it. I think about how pathetic I look, now wailing in my car and I just don't care. I just want it all to go away. ​I get none of my errands done. And I feel like I have nowhere to go. ​(edit: I found a friend who was home and went to her house. She made me coffee, and I laid on her couch for 4 hours. She offered me food, walks, wine, car-rides... but I wanted none of it. In the end, it was her two lovey-dovey dogs curled up on my feet that finally made me feel better...we eventually got something to eat and I headed home. I called my auntie on the way for more support and she listened with love as well.

 

The love is here, it's just harder to feel it...really feel it... when I have so many *other* feelings going on...) ​

 

Man of Steel ​Liver Biopsy

Thursday was scheduled from 9:30 to 12:30. It took closer to 6 hours. They had difficulty piercing my husband and bent a needle. It took a more attempts and time than anticipated because of his tough body (they said 'cartilage' but I'm translating to 'made of steel'.) ​

 

CT Scan in a Ghost Town ​

The hospital is like a ghost town.

There is no bustle, no beeping, no busy-ness.

It feels eerie as we check in with the lone ranger. She ensures we are not sick and watches like a hawk as we wash our hands at the entry. ​We wait in the CT area quietly. The tech pops out to let us know that she has 'one from emerg, then us'. I read the leaflet about CT scans, read the intake form my husband has filled out. A past form is on the clipboard and I flip nosily to read it.

 

It's all Greek to me, except one item.

The box is checked beside the word 'URGENT' and I sigh.

Urgent, but not EMERGENT.​

So many words to untangle and redefine in my mind. ​The CT scan is only 15 minutes late, I wait alone in the deserted hallway, thinking of the severity of our Coronavirus. It's not here in full force yet, but it will be soon. The isolations and business closures are coming down the pipe now. I fear for our appointments and treatment. Will we be ok? Is 'Urgent' enough to see us through this... and we are only at the start...with COVid19 looming in the shadows?​

 

The Fight I Don’t want To Talk About ​

We had The Fight I Don't Want to Talk About... and I don't know if this is the space for it.​I will keep this one in my heart, but it drained me for the day.

 

​Postponed ​

Colonoscopy postponed. My heart sinks.

I find out Friday after hours so can't call our GP or anyone, for that matter.

What does this now mean?​

So many questions, again.

 

I message Dr. Friend and she replies with kindness and assurance (even though she is sick herself - she tells me she is coming off 116 hours this week and needs sleep. Of course you do, I am stunned by her hours and amazed that she could reply to me in this moment). ​

 

I can't believe we are still in a waiting pattern. Waiting is the worst. Ben can still get his diagnosis from the liver biopsy- once those results are in... which is 10 days away... approximately.

A diagnosis.

THAT is what we are waiting for.

Even though they know it's cancer, we need official paperwork.

And, of course, a complete understanding of where it has affected his body.​Again, I say, waiting sucks.

 

Even more so... now that things are being postponed....​I know that the COVid19 has taken over the medical world, resources and that we are accommodating for emergencies. ​

 

But THIS is MY emergency.

MY Ben.

MY guy.

MY life.

 

​No Thermometer ​

I went to our Pharmacy to buy a thermometer but their door was locked. I saw people inside so tried the handle, harder. A woman on the inside pointed to the sign 'Only 5 customers at a time'. I nodded and stood back to wait. When someone finally left, the entry was made clear for me. She asked, 'What are you here for?' and when I told her, she turned me away, saying they were sold out. ​

 

I went to our other Pharmacy (only 2 in my town) to get one. Also sold out. More were expected Friday.

 

What a stupid thing to NOT have.

And now that Ben has had scans and biopsies, to be told, 'Watch his temperature....' ​I feel ill-equipped.

I am annoyed that we don't have this simple item.

 

I look on Amazon but it's overwhelming. Armpit, ears, mouth? Attachments, apps, downloads? Baby, adult, both?

Nothing seems simple, and nothing seems right. ​

 

Eventually, I buy one that says it will arrive in 10 days. I have Prime but I buy it anyways- I've been online for 3 hours, searching for the right thermometer and now I just need to be done with it. ​I hope it's the right kind, and I hope it arrives safely.

 

​Volunteer Isolation

We, like many, are self-quaranting during this pandemic. COVid19 has hit our safe little area of the world and it's impact, though subtle, has not gone unnoticed. It started with cancellation of large group gatherings (concerts, Sea-Wall Run, sports) but now it's in my local too. Restaurants, bars and pubs have been mandated to close.

 

Daily, the impact is growing.​I see posts of friends staying home from work, others have been laid off, kids are not in school, many people are trying to stay home- as directed- to keep the spread of the virus minimal. ​I feel extra cautious with Ben's lowered immune defenses, so, I, too stay home to be safe.  The onset of cabin fever is worsened by the fact that my cabin-mate is 'out-of-sorts'. He is in no shape to play games, cook with, or even enjoy a fire with.

 

Conversations are short and often only about 1. the pandemic or 2. cancer​It makes my days longer and harder. Lingering around the house, trying to be supportive and trying to create space at the same time. We try to talk about other things, but it takes great effort. ​

 

The Wood Burning Stove ​

It's March, and still chilly here. I am making fires on our outside deck (we have an outdoor wood burning stove), but it's still cold. Even with the fires, I wrap up in blankets. I want to give Ben the run of the house ...and find a space for me.​It's my third day of fires and I've been enjoying it. I've been listening to music, cuddled in blankets, cuddled with our cat, Mia and writing.

 

It's been really wonderful writing in a notebook, instead of computer.

At least until my hands get too cold.

My fire-get-away has helped break up my days. The cabin-fever/isolation is hard to navigate. ​

 

However, today I realized I have used up all the chopped wood. We have whole size trunk pieces, ready to chop.... and I feel a wave of sadness and irritation. I don't like chopping wood. It's partly my lack of strength and failing aim with the axe (a true exercise in frustration), but it's mostly my irritation with cancer.​

 

One of the effects on Ben is pain, great pain- and with that comes an inability to do certain chores. Like chop wood.

 

I don't know that he particularly liked this chore- chopping wood- but I do know he always had the wood bin full...and I was always grateful for it... ​

 

Little Connections & Hearts in the Window

I had a wonderful phone call from my uncle LeRoy today. We talked about Ben and his home-quarantine. He took a walk and felt like he was in a ghost town, but he's under strict instructions from his 2 daughters and the government to stay home. (I'm not sure whose instruction he's taking with more gravity, but, certainly he is self-isolating, too!) ​

 

Over the weekend, the connections have been plentiful as well. My auntie Gloria text from the lake- also holding up alone- for safety. She was just checking in. A phone call with cousin Stacy, a teacher, who is home painting a bathroom- due to isolation standards. A Face-time chat with my sister Angela & nephew, Kevin. A Face-time chat with Alenna & Alana- my best buds. An email from cousin Jeff, who signed off as 'your favourite cousin, Jeff' (reminder? suggestion? It wasn't clear, but made me smile). A text from Auntie Ruth, just to say hello. A phone call with cousin Erin, to chat. ​All these moments are coming into play, thanks to quarantine... and cancer... I appreciate them all.​

 

I have also put hearts in our house front window- a show of solidarity for the virus. People are posting them in their window to say 'we are not alone' and let love in, and let love flow out...even though we are not physically touching right now. We can still .. heart touch... so, my hearts are up- waving to the world.

 

​A Light House

I have no words for how much tonight helped ...both us of.

It's Sunday again, and I feel like we are always flying blind on the weekend.

We have no system in place for after hours care or contact.

​

Last Sunday we ran out of meds and this Sunday is incredibly bad- with pain, and for the first time, vomiting. I feel incredibly alone at this time, especially when his pain escalates.​I made a phone call to cousin Beth, sharing my concerns and worries; she began explaining some of the things she knew about pain management.

​

I asked if she would mind talking directly to Ben. Of course she agreed, and offered Dean's support too. It lead to an amazing discussion with both myself and Ben, Beth and Dean. Beth's background as a nurse included palliative care and pain management and Dean's experience as a pharmacist, and in particular, around cancer and pain, was light a lighthouse on the shore.

 

​I have been worrying that Ben is 'toughing' it out too much. That his pain is greater than he lets on.

But how much is too much ..when it comes to narcotics? We talked about our concerns for addiction and his use of morphine.

We talked about how 'pain' eats up the drug and in this moment, he can withstand a lot more than a healthy person without the same concerns.

We talked about vomiting, bowels, gas, eating and pain.

 

​They suggested a journal with parameters for what he's taking (especially with the Break-through morphine- that's the one he takes 'as needed' ... on top of the long lasting). To note his pain on a scale of 1-10, to record his ability (or lack of ability) to do things, record sleep, nausea... all of it.

 

They explained how it can be such a great tool to bring to doctors and really highlight how home life is.​(I know we were recommended this early on too, by another family nurse, but for some reason, it fell off our plates. I think we just...didn't ...retain ...it...)  ​

 

They also suggested we do a Thursday 'inventory' of what we have in the house, medication wise. To ensure we have more than enough for a tough weekend. They talked about hospital admitting if needed and not to doubt ourselves. ​

 

When we end the call, I am beyond relieved.

 

The next morning, Ben thanks me for reaching out to them and I am grateful for the lighthouses in my life. ​

 

Monday Morning.. More than The Blues

This morning is so bad- pain for Ben is incredible.

He hasn't eaten in 24 hours, he can barely move and he's uncertain about taking medication due to nausea.

He calls Dr. Family to discuss his situation. The ER is on the table... He can't face sitiing in a car so he tries lying on a heating pad.

 

I hover and feel useless.

He asks for ice on his back, to try to help that pain (his back is arthritic, to top it all off).

I am thrilled to be asked to help, to do something for him... but cannot find our gel backs so he get frozen blueberries. Another item that I can't believe we don't have. I feel useless... at the basics.  

 

My Biggest Fears

March 23

My biggest fears right now are that the Colonoscopy is cancelled.

The Bone test has not been booked. I worry that we are in a holding pattern.

That we will be stuck in 'pain management land' while we wait for the virus to pass.

It has been 26 days since we started this journey, since we got the news.

 

And I'm upset. It feels like nothing good has happened.

Like no action is being taken. We just wait, wait, wait....

 

Banished

We take Ben to Emergency, his pain is excruciating and nausea worse.

I pack him extra clothes in case. I bring a book and a journal, grab a piece of toast on the way out and we go.

 

The 22 minute drive to ER is terrible, he's uncomfortable in the car.

Bowl at his feet. Window down. ​

 

We finally arrive and after a screening of questions about lung heath, fever and travel, Ben is admitted.

 

I, however, am not.

​

I am banished to wait outside.

 

No 'extra' persons allowed in the hospital at this time.

 

Tears well up as I stand there, uselessly, wanting to protest. Slowly, reluctantly, I go to my car, sit in the drivers seat and sob uncontrollably.

​

8 Hours and On Track

Ben is at the hospital for 8 hours.They take x-rays and review his medication.

​

When I pick him up, he's on more medication and we have a better plan for pain.

And the cancelled colonoscopy is BACK. (hooray)

And we get the results from CT scans.

Both Brain and Chest are clear- no cancer there. (hooray)

​And the mattress for the Day Bed Arrived. (hooray)​

 

Cleansing Colons

It is not fun.

 

Day Bed Arrival and Success

The Day Bed has arrived!

Ben helps me set it up (less than one hour and fewer fights that our last Ikea Dresser... WIN). It is perfect. It is a beautiful, long twin and before the day is done, he has rested on it twice (while cleansing, poor guy!).

 

I am content for the first time in a long time.. not only is the bed beautiful in our living room- it's upholstery looks very 'couch-like' (which I really wanted), but it's also going to be an amazing piece going forward for a guest room. Once we move to a bigger house. In OUR future. TOGETHER.

 

The other thing about the Day Bed looking like a couch (and getting it early) is that I really wanted it to become part of our living room and regular life. I did not want it to arrive... later in the journey.. and be labelled as 'the sick bed'  or something negative. And it's not. I have tried it out (movie!) and Mia approves too.

 

Colonoscopy Day

Colonoscopy 8:45am. Ben is to be dropped off at Entry 4, alone, no wife.

Doors will be locked but we have a number to call to let him in. The hospital is being very serious about social distancing and limiting who gets to enter.

 

It's all for a good reason, but doesn't bring me true relief or joy. I busy myself with cleaning the deck and organizing my office while I wait for the nurses to call me. They have instructed Ben not to bring anything of value. He leaves his wallet, phone and wedding ring. He takes his journal of events and a Farmers Almanac- a gift from our niece and it warms my heart.

 

When his surgery is done, I am forced to wait in my car while he meets with Dr. Oncology. It is the worst 32.4 minutes of my life. I hate not being in the conversation and news session, but nothing can be done. ​

 

Dr. Oncology Reports

Dr. Oncology confirms that it IS colon cancer. In both liver and colon.

He lets Ben know that they removed a number of polyps from his colon (yay) and they discussed his treatment options. The treatment that Ben has selected is a chemotherapy that combines tables and IV.

 

We are to wait for a call. (boo)

 

I take Ben home to rest. (yay)

​

Baby Chainsaw

I have an appointment that cannot be cancelled, but Ben cannot be alone. My good friend Tina (who was selected for her 'not annoying personality' by my husband) is able to come and hang out. (safely from a distance... she has been self isolating and lives alone so she is our safest bet)

 

Before I leave them alone (Tina has already chopped more wood for us!), Ben says more wood could be chopped if the larger pieces were chainsawed. He casually mentions he has a chainsaw (it's new, and he loves it and it crushes him to not be able to use it himself!). Tina muses, 'I would love to learn how to use a chainsaw.' ​I snap. I lose it. (just kidding, but I DO remind Tina that one of her KEY babysitting duties is 'NO machinery shall be operated'. ​Ben scoffs softly and chortles 'It's just a baby chainsaw' (and Tina parrots in the tiniest voice, 'yea, baby chainsaw.')

 

​I glare at them both, but with a smile in my heart. 

This banter is welcome in today's events. I DO make Tina (she's the only one I trust right now!) promise me 'NO CHAINSAWS.' ​Reluctantly, she agrees.

 

​​A Loose Wedding Ring

March 26

Ben's wedding ring is too loose due the weight he has lost. He tells me he must take it off, so he doesn't lose it.

I nod. ​Later that night, I notice his bare hand and it hurts my heart (even though I know that he had to do it.)​

Skinny fingers. Skinny husband. Cancer won't even let him keep his ring. ​

 

Waterfalls

I've been out hiking at different waterfalls.

It's good to get outside.

It's hard work and I feel like my leg muscles have not been used in years.

I wish Ben was with me.

 

​Gasoline & Water

 

Gasoline & Water. I run out of both tonight.

​Saturday, midnight, I've just said good night.

As soon as my pajamas are on, Ben says, 'I might need to go to the hospital...' ​I waste no time.

I'm dressed.

I have his pain-journal, medications, jacket on.

We leave within 4 minutes. (I have learned that 'might' means 'now') ​22 minutes to go.

​

We drive 5 minutes, and I notice Ben is licking his lips, sort of air-chewing.

He asks if I have water in the car. I do not. ​

17 minutes to go. Damn.

Bing! My gas light reminds me that I have 50km to empty.

It's 24km to the hospital... each way. Damn. 

​

​It's dark, it's cold, it's wet. I drive eight over the highway limit - and wish I was more confident. In the dark, he struggles silently beside me. 

I wish I was Ben, but I am not. I am scared of having an accident, hitting a deer and not getting to the hospital fast enough.

Still too many minutes to go.

 

I blow a red light- it's just after midnight- I looked both ways and slowed first.

I hit the gas as I realise it's clear... my heart is pounding as Ben gasps, 'Good job, honey.' as he knows what a moral struggle that was for me. Even at midnight. Even on empty roads.  

 

I roll into Emergency and out he goes.

I park in visitor and wait with anxious worry.

It's 12:24 a.m.

I text him, 'Update me when you can.'

And I wait.

It's cold, so I let the car run for a bit to keep warm.

 

My dash flashes '26km to empty' and I curse myself, and this car.

I decide to get gas and drive through the city. To my dismay, I waste 5km of driving, an no stations are open. I return to visitor parking and turn my car off. ​It's chilly so I grab a blanket from the back and cozy up as best I can. I'm so annoyed.

 

I am usually good at keeping my car about HALF in fuel. I start the car at 1:15 for heat, but not for long, I need gas to drive us home.

I must have dozed off, because when I wake, it is with a start. I am absolutely freezing. Where am I? I blink in the darkness and it slowly comes to me.

I shift uncomfortably in my drivers seat, start the car and see that it is almost 2am.

​

I have a message from Ben telling me to go home, he will spend the night.

​

I drive home safely and arrive with ZERO glaring at me in the driveway.

I am so grateful that I made it.

For him, and now for me, back home. 

​

Jezebel … Again

Last night I shut my bedroom door tight. I had been leaving it open, just a crack, for two reasons.

First, to listen for Ben on the Day Bed; and second, to allow Mia entry (...just in case I make it off the bench...). ​

​

But not last night. I needed peace and quiet so I shut it tight.

 

This morning I entered the living room to see Ben on the Day Bed. No cat in sight.

Where's Mia? I ask.

You mean Garbage Butt? She came in, and was super cuddly, right up on my chest, having a nice time.. until I smelled her! I had to push her off.

I snicker under my smile.

We laugh about how indignent she was when she left Ben's side.

Her cattitude.(In related news, that's what you get for stealing Jezebel from me. )

 

A Hot Tip

Two friends have suggested that I phone in during appointments.

I can listen on speaker phone. What a great- and easy- suggestion.

​

Catch Up

Monday has been tough on us both. We are tired, still catching up from the weekend.His overnight at the hospital, my sleepless night, coupled with stress and more worry. We watch Home Renovation shows and share the Day Bed. It has been an absolute blessing in our lives. ​

 

Yellow Skin & Soft Hugs

Ben's skin is very yellow. And it worries me.

Ben's body is very skinny. And it worries me.

Ben doesn't eat much. He doesn't sleep much. His energy is low. Our hugs are soft and delicate.

 

Gone are the bear hugs I used to love. I remind myself this is temporary, but it's hard.I look back at how much I did not notice in the beginning.. the weight loss, the eating... and compare to now.

 

Now, I feel as though I notice it all. Every day. I look for joy and things to be grateful for, but it's hard. I wonder how people with a less positive outlook on life get through things like this. I close my eyes and send out a little silent prayer to them all, 'Please be ok, you are not alone.' And as I think it, I wonder if it really was for them. Or for me. ​

 

Medication Adjustment and Coverage Issues

We visit Dr. Family and Ben's medications are once again increased.

And added to. It's always about pain, eating, moving.

He looks so yellow. Higher does are prescribed and new worries are added to our list- besides constipation and pain, we are now watching breathing and nausea.

 

Dr. Family asks us how our MSP issue is working out (Ben's coverage has a gap- it's a long story- and it's being worked out thanks to an amazing network of helpers.). We ask Dr. Family how it came to his attention and he said when they submitted Ben's visits to the Ministry, it was rejected. In plain terms, Dr. Family has not been paid for our care. This particular point was news to Ben and I. Dr. Family said he was accepting our visits anyways, out of the kindness of his heart.

 

I thanked him profusely and assured him that we had a liaison working on getting his MSP back online.

 

Waiting for Chemo Instructions

While visiting Dr. Family, we asked about the Chemo plan. I asked if the 'gap' in Ben's MSP would be the reason we did not get a call yet? Dr. Family wasn't confident about that, but he had received and signed paperwork from our Interior Health Social Worker while our meeting was on and it was marked 'URGENT' and faxed off. So, we wait again.

For the call to chemo.

​

For paperwork.

For the word 'URGENT' to redeem itself.

​

A Truckload of Trouble

One of the small blessings within this pandemic has shown up in my driveway- in the form 2 rosy cheeked lumberjacks! A wonderful friend and her husband dropped off a HUGE load of wood- they filled their pick-up- and filled my heart. They arrived with wood.. and joy!

​

She shared how they were giddy with their new-found chance to be home together. (Normally, they both work up north and would go long periods without each other). She said they had been venturing out into the woods- almost daily - for wood and walks and they were filled with joy for the ability to deliver and help others- me- today.

 

I assured Ben that they knew it was for our outside deck, for the luxury of space for me, for an area to enjoy a fire (and not to heat our home, as many in our community rely on with indoor wood stoves), but still, he was not pleased. He worries that I will create problems with asking for help, asking for things I don't really need. I assured him that they wanted to do it, but it is a struggle to have this disagreement.  

 

Lost Days & CoronaV

I had to look at the calendar on the computer for the day.

I don't know what day of the week it is. It all blurs together.

It's the combination of cancer, sleeplessness, and the added layer of the virus.

 

The self-isolation of COVid19 has added such a cruel layer to my journey. Yes, I have had outpours of love, deliveries of wood, donations online and encouragement on social media. But I realise how much I love, miss and rely on touch. My sister and her husband dropped off some items at our house and we waved from opposite sides of the deck.

 

My heart hurt as she cried for not being able to simply hug me. ​But it's too risky. Our family is taking this very seriously. Lisa's husband has extreme asthma and her daughter has an auto-immune disease. Ben's immunity is low due to his cancer. And the result of this, is social distancing ....even sisters. It's cruel and not fair, but we do it with stout hearts. (ok, 'medium' stout hearts, because truth: I am grumpy about it).

 

I read an article that said 'Everything we do BEFORE the virus will seem alarming. After it passes, after any dire consequences- we will all wail that we should have done more'. And that has really hit us. We would rather be alarmed, shocked, lost in a foreign world.... but safe. None of us would forgive ourselves if we didn't do our best; our VERY best to safeguard our families. And each other. I love you, Lisa, Feel my hug through the air...I feel yours in my heart.

 

4 Calls and Medical Green Light

It's Wednesday and we are still waiting for our call to attend chemo.

Today, I follow up. It takes a train of calls- Social Worker, GP, Oncologist, Hospital.

I am frustrated that it takes four calls to get the information I need. I am frustrated for the medical professionals I talk to who share my angst in the lack of connected-dots in their medical worlds. I worry (and am correct) that the chemo has not started because Ben's MSP has not yet been re-instated. On phone call #4, my worry is confirmed. His file is flagged and his MSP is not active. I explain, yet again, the entire story and ask, 'Who can I call next? I am looking for the solution on how to get this activated.'

 

She is incredibly helpful, doesn't dismiss me, and continues to investigate her computer tabs. I hear frantic typing in my phone and I wait with baited breath. My heart leaps when she reports, 'Oh, great news. It says MSP active. We will get your chemo coordinated right away. I will call you back once I talk to our nursing staff.' ​I thank her profusely, and let her know I will call back in 2 hours if I have not heard. She assures me the call will be before then.

 

Sleepy Weak Husband

I burst into the bedroom to tell Ben his MSP is back. I fill him in on my journey, persistence and success.

He gives me a sleepy smile. He looks weak, and yellow.​It feels like we are down to the wire.

 

I envision chemo pulsing into his veins and body and attacking the cancer.

I imagine it will be like Popeye eating spinach. That he will spring up immediately and be super strong. (Of course, the logical side of my brain knows that this is not how it works, that it is still a journey, that he will still be weak and impacted in ways we have yet to learn. But I am still so ready for this step.

 

He is too. ​We feel peace in the plan....and I can't wait for this call.​

​

Overdoses, Worries and Beasts in the Cupboard

I'm waiting for oncology to call. In the meantime, I spoke with cousin Erin, another pharmacist in the family. I told her I was stressed about the level of morphine Ben was on. Very quickly, and after our visits to the ER, his long lasting dose has increased to 18mg twice a day. (It started on 6mg.. and our GP plan was to increase slowly.. next to 9mg and so on.

 

BUT the ER visits have spiked his doses and now he has maintained this high level. We have been told it's not ideal, but it's okay.)​She asked if I had a naolxone kit. This is for overdoses, in an emergency. I had not heard of this but now plan to get one. I know the narcotics eat away his pain, but it's just so much.

 

​My heart hurts for my healthy husband who hardly drinks, refuses drugs and doesn't even take TUMS.. he would rather eat greens and suffer through pain a little. We learned this with his back pain. He despises taking tylenol and advil. He doesn't like how they are hard on his system and hard on his stomach. And now, to lift him to this level... it hurts, physically hurts me to see 8 pill bottles lined up in our cupboard. They are foreigners, unwelcome visitors. They took the place of my toast nook.

 

We wanted the medications on a shelf with easy access, positioned safely in the kitchen. Every time I reach for peanut butter, I see them. I forget that this is their home now and the peanut butter has moved to another shelf. It's not fair. I want my breakfast cupboard back... but mostly I want these beasts removed.

 

Small Things with Great Love

Beautiful Margaret has called from Oncology. She does not have news yet, but she didn't want to blow by the 2 hour window (my deadline) without connecting with me. She didn't want me to call back, anxiously. She reached out for me.

 

Tears spring to my eyes at her kindness and care.

She knows I am pacing at home, worrying and waiting.

Her thoughtful act. A simple call has meant the world to me. Today, in isolation, Margaret has brought me a sliver of joy.

 

I tell her how much it means to me. To be remembered, to be thought of in this small (AND GREAT) way. She is still piecing it together, but we will have our plan by 4pm. She apologizes for the delay and shares how bad it is for them at the hospital. Their nurses are understaffed, they are calling ER nurses to give oncology nurses breaks. A nurse is sick as well and there isn't any more nurses to cover. Anything.I commiserate with her for a brief moment and thank her again. She assures me we will hear by 4pm.​She won't forget me. And I know she means it. ​​

 

Snow in April

It's snowing today. It makes me think of my mom.

It snowed the night she passed away.

It snowed the day we held her service.

Both days, it felt odd for snow. It was not a likely forecast.

And that is how I feel today. It doesn't feel like it should snow today- April 3 in the Okanagan.

But, it did. And I am somehow comforted by it. ​

 

Ben's looking more and more yellow. I see it in his eyes especially.​I want them to be white again. White like snow. Soon... they will.. I know it. ​​