Buffalo Cheese and CT Scan Results

Yesterday I was craving fresh (in water) buffalo mozzarella balls. So, I get Zsolt to drive me to the grocery store – where they have big buffalo mozzarella balls in water. I also picked up some chips. We get to the cash and neither Zsolt or I have our wallets! Not a penny on us! BAH!

I threw a little hissy fit of frustration, and then we hop back into the car and go back to the house – pick up the wallets – and head to a closer grocery shop (Sobeys).

So we go to Sobeys, except they don’t have buffalo mozzarella balls. They have cow milk, but that is not what I was craving. I love that sweet flavour with the buffalo. However, the chips here were on sale, so I pick them up and saved us a few bucks.

THEN we decide to go to Farmboy. Into the car we hop and cruise down the strip to the shop. In the shop I go. OH, one last package of fresh buffalo mozzarella cheese balls. We grab ‘em and check out.

I get home, ready to dive in, when I see the seal isn’t sealed. The damn package was already opened! Not cool. (And I’m really starting to lose it – getting really pissed off.)

Back into the car, and back out – this time to a different Farmboy, since the last one only had one product left, which I bought and now wanted to exchange. So we go to the different Farmboy, and I grab their last package of buffalo mozzarella balls (checking the seal), and exchange the cheese.

FINALLY we get home, I take out some balls, and collapse in front of my computer to watch a show. Sweet, cheesy, salty bliss.

“What can I learn from this?” I asked myself

If at first you don’t succeed, try-try again.

I think the same can be applied to cancer. No matter how frustrating, it is worth pushing for what you want. In my case, to try, try again.

And I can say this so easily, because today I received good news. Today I have NOT been crushed at the doctor’s office. The CT shows good results, considering I’ve only received 2 doses of a new chemo treatment. Good results considering the last treatment didn’t have great impact.

I’m very happy, with a tinge of bittersweet – I can go back to work, but will still get this chemo every three weeks. Upside is that it is easier to recover from compared to the previous approach, even if it is tiring (so I can live my life a bit more as I also destroy cancer).

The MEGA upside is that it may be having a GOOD effect on KILLING the cancer. That blows any bittersweet feelings out of the water. Die cancer, die! MUHAHAAHAHA!

I said to Dr. Canada, “I didn’t expected good results. I was feeling defensively pessimistic.”

He nodded his head. “I think that’s a reasonable approach. But I’m going to be optimistic for you.”

So I said “Okay, you stay optimistic for me.” And I very much appreciate it, indeed.

Today has brought a couple pieces of happy news – from a surprise with my novel, to a surprise with my results. Steady onward, and we’ll see what happens next.

Considering I thought this would be a most horrible week, it has turned out pretty well.

The end.

P.S. I love this picture made by my friend James. Check it out:)

Who doesn't want to be compared to Katherine Janeway?!

Who doesn’t want to be compared to Kathryn Janeway?!

Nope

Well the treatment I was on didn’t have the desired impact. The cancer has kept growing. I’m now onto a new chemo treatment and in 2 months it will be time for another CT scan. After that I don’t know. The problem, I reckon, is that the cancer isn’t just one thing – it is different types, even if they are all breast.

I feel helpless at the moment. Only got the news yesterday. It’s like… this stuff just doesn’t want to slow down. In a sense, I’m at the top of the CN Tower, and standing on that glass floor –suddenly realizing the ground beneath me is very, very far below….

Dr Canada says it is not time to give up. He says there’s still a fight to go. So, onto the next treatment and see what happens. See what drugs are coming out. Right now I can’t really digest all this – except the disappointment. We’re chewing on plenty of that. Truly, I thought it was going to work.

I know the empowered and active patient lives longer. But there are moments where I think we need (or at least I need) to lick the wounds. This is one of those moments. And then we’ll need to just keep going. Try new things. Push. But damn it, I could use good news!

Venting

This is a venting post – so be warned. I’m just grumpy and want to wha-wha-wah it all out of myself. Maybe that will help me feel more in control again.

So last week I went for a head MRI – brain and eyes to be specific. I get to the hospital to get my port accessed, which took way longer than I wish it did, then ran over to the MRI scan place – where they said I was on the cusp of lateness, and they may not be able to fit me in.

I say: I’m ready now! Port accessed and ready!

And I run into the change room and change, and am by the MRI room in about a minute in the scrubs they give you. I wait for someone to come over, see I’m all set and bring me in.

But I just keep sitting there. And then I hear this technician lady talking into the phone . . . “so she doesn’t need it?” (and yada yada yada, I didn’t memorize each word – but she was inquiring after someone.)

About five minutes later, maybe ten, she comes out to me and tells me the MRI has been cancelled.

“But I have an consultation next week with two radiation specialists to discuss the results of this MRI.”

“The report says it should be in June. I can’t do anything.”

“But I’m here now. My appointment is for now.”

“It should be in June,” she replies.

“But I’m meeting the doctors next week to discuss the cancer in my head – the results of this scan. What are we going to talk about if there’s no test done?!” I’m getting pissed off now.

“There’s nothing I can do. That’s what the chart says. You’ll have to come back in June. Or go speak to the doctor now and get them to call me.”

“And I might get in today?”

“I don’t know.”

AUGHGHGHGHGHGH. AUUUGH!

Okay. We go to the cancer center at the hospital and they are very helpful. Within minutes the receptionist has cooled my lava-like fury and is investigating the situation. A nurse is looking into it for me, I just need to wait.

The nurse comes out and explains the scan really should be in June. It was booked too early, and therefore moving it to June is okay. It’s normal procedure is to wait 3 months post head radiation before doing the follow up MRI. Everything is okay. The doctor did this purposefully.

“But I’m meeting with the doctors next week, supposedly to discuss the scan.”

“It’s mute now, I’ll cancel the appointment and request they reschedule for after the MRI,” assures the nurse.

I calm down, think ‘fuck it’, and go to Bridgehead (coffee shop) for an almond milk decaf latte. It was a very stressful morning.

This week I get a notification phone call about my appointment with the radiation doctors on Wednesday. I call them back (responding to the message) and say:

“Can you rebook this for after June 10th? The scan was postponed”

To which they say

“There’s a note here for this specific date.”

“To review a scan that didn’t happen yet.”

“You’ll need to call the doctor’s nurse and have them sort it out.”

OR, BOOKING OFFICE, YOU COULD JUST REBOOK! I say in my head. But not out loud.

Then I call the nurse. She hasn’t called me back yet. Tomorrow is Tuesday, then its Wednesday. I’ll call again tomorrow. I know my stupid appointment stuff isn’t her top priority – but my continual sense of displacement, of misinformation, or missed connections between departments . . .

. . . it’s getting to me, man.

Who has the holistic picture in all of this? Me, just me, only me – because I’m at every appointment, I’m at every scan, I’m at every cancellation, I get every phone call, I meet every doctor, I hear their ruminations.

Who is at the center of the fucking tornado? ME.

Who should be held as an expert in her care? ME.

Who is given the very least amount of credit when it comes to rebooking, decision making for the logistical details, having results sent between departments, getting copies of the reports – me.

lower case me.

I know everyone is covering their own butts. I know. And I know it’s a huge monster of a system, and the fragmentations are a necessary part of so many working arms (wonderful arms, caring arms, capable arms) trying to help in different ways. I know it’s all so hard to manage.

But I also know I AM one of the experts in all of this – yet far too often I’m made to feel helpless and victim-like in my lack of control.

One other thing. . .

The doctors have nurses who are assigned to them. That’s great. But I remember in England, I had a nurse assigned to me. Someone who didn’t actually work for the doctor, but instead worked with the patient, her whole job was to advocate on my behalf – and whenever I had a question, I could pick up the phone and they would be all over making things easier. If I was in the hospital, I could drop by their office and ask a question.

There are times in health care when I know my story best. And in those moments above all others, I’d like to be given the credit I deserve.

There are times in health care when I am the weaker one, the ‘victim’ of a hard round of chemo, barely able to advocate for myself… and in those moments, I wish I had my breast cancer nurse in England again, someone who I know puts my schedule, my stress, my issues first.

Lately I feel lost in a big system of notifications, notes and dis-empowerment.

This is a time when I’m frustrated with my health care system. It’s not an everyday experience, and it doesn’t mean I’m ungrateful . . . but there is something very important that is lacking. And having to jump these ropes of permissions and contradictions leave me just plain mad.

I’m mad.

Not upset or sad: mad. I guess, ultimately, it is that feeling that makes me want to get things done. To make more phone calls. Leave more messages. Become more annoying.

So look at this. . .

After all that venting, I’m feeling empowered.

Huh, maybe the system does work. . .

BAH!