One down, one more to go

Finally something good happens in the doctor’s office! Today I received the results for my eye and brain MRI. We waited about 1.5 hours to see the radiologist, who is such a lovely man that you really cannot mind the wait too much, and it had the effect of pumping up my paranoia. After all, why else do they keep you waiting that long unless they are scrambling to process the news and develop a plan before visiting your room? That was my logic at least.

While I’ll probably never get ‘no evidence of disease’ due to the cancer having infiltrated the skull of my bone (in effect growing the bone, which won’t typically shrink again even if it dies) . . . the legions have slightly decreased. Even the eye lesions have had a slight decrease once again.

Also, the MRI techs didn’t find any new lesions.

Plus my actual brain tissue still remains clear.

SO, today I received good news. Nothing ends here in terms of the threat, but in terms of improvement – it is happening. The radiation has been worth it. May it continue to help my body push back.

Even as I write this, I can feel an uncomfortable stitch beneath my left rib cage.  Just this morning I had another CT scan, and I’ll be receiving those results this Wednesday with my oncologist. (Day after my 34th birthday). If there is any growth (which I reckon is likely) we’ll have to pivot strategies – and that will start with a liver biopsy of a cancer lesion.

But even if that happens, I will try not to panic. Do not panic – just proceed. The HER2+ therapy, in my opinion, has had an impact on my bone mets – even if my lungs and liver are not responding as expected. And since bone mets can become painful if they grow, I’m grateful for any form of control. I’ll just need to see if my oncologist agrees in that it is worthwhile to continue the therapy. Sometimes I think I’m in a game of negotiations as to what can and cannot continue.

Anyhow, at least for today there is a WIN. And with my birthday being tomorrow, I’ll take it gladly.

Finally, some good news. 🙂

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!