Saturday, April 25, 2015

it's deja vu all over again

I've been struggling to write this post for the last couple of days. Two nights ago, a friend of my son's was saying that he finds it much easier to write when he's writing to someone. My spouse shared that he once had a university prof suggest that he get over writers' block by starting his essay as a letter.

To that end, I wrote an email to my loved ones today and, when it was done, I decided that it was clear enough to share here, as an open letter to anyone who reads this.

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

I saw my neurosurgeon on April 22 and he has decided that brain surgery is my best option right now. It's been scheduled for May 5.

The communication around all of this has been terrible (this is the same MRI that he said "looked better" a short while ago). From what I am able to understand (Tim, feel free to jump in here), Dr S (the neurosurgeon) took the images to a different radiologist who he trusts after feeling that he was getting inconsistent information. The two of them decided that it makes sense to take action.

I now have 3 spots on my brain: the mass on the site of the original tumour, a tiny spot deeper in the cerebellum and a new one, close but not attached to the original site (this is the one that is really of greatest concern). From my reading of the MRI reports, this one is either on or very near the lining of the brain.

On May 5, the surgeon is going to attempt to completely remove all spots and then biopsy them. While there is slightly higher risk of complications this time around, the recovery time will likely be a bit better than last, if all goes well.

The lousy way this has played out means that my fantastic plans for this spring have been scuttled. I'm still trying to figure out how much (no bike trip 3 weeks after brain surgery...) and to figure out how to organize our lives so that things go as smoothly as possible.

The kids know as of last night (didn't want to tell Daniel on his birthday) and they are amazing young men. Truly. And Tim - I actually don't have words - is beyond patient, loving and supportive. This is so hard on these guys but they are very good to me.

My pre-surgery MRI is on April 27. I have treatment April 28 and my pre-op appointment on April 30. If memory serves (and there is much I don't remember about last time, including the entire first season of "The Good Wife" I watched in recovery), I won't find out the time of my surgery on May 5 until the day before.

I think you know everything that I do, now. Please, please forgive the group email. It is so much easier to get this out once. I'm stressed but in a reasonably good place and happy to try and answer questions or just chat.

Thanks and with much love,

p.s.: It's actually a nice feeling to need to send out a group email. I have so much support. It's good to remember that.

Friday, April 24, 2015

earth day baby

April 22, 2003

April 22, 2015*
Daniel is kind, funny, smart, loving, loyal, thoughtful and self-aware. I couldn't be prouder of being his mom.

*I can't resist bragging. He was all dressed up on his birthday to do a presentation at the Ottawa Regional Heritage Fair. His group's presentation was "The Truth about Residential Schools" and they won a prize. More importantly, they chose this topic, researched it thoroughly and presented it with great sensitivity and clarity. I know I'm biased but I was a little blown away.

Monday, April 20, 2015

bouncing ball

Stand at the top of a driveway. Bounce a rubber ball as hard as you can. Notice how each time the ball hits the ground, it re-bounds a little less.

I have a lot of empathy for rubber balls right now.

In my last post, I somewhat hesitantly shared good news from my neurosurgeon. Things were looking better and he didn't need to see me or do another scan for three months.

I was relieved but also a bit uneasy. I pushed for the report from the radiologist. I also went to yoga classes, hung out with friends and family, rode my bike and went about my daily life with a little more spring in my step bounce in my walk than I have in a while.

Last Wednesday, the other shoe dropped. The phone rang at about 5pm as I was racing to get some food on the table and my youngest out the door to an orientation at a potential new school. My mother was here and I was trying to visit with her at the same time. I really wasn't braced for anything serious on the other end of the phone line.

It was the secretary who works with my neurosurgeon calling again. She told me that Dr. S spoke with the radiologist and they both agreed that the mass at the previous surgery site is “stable” (That's good. Not as good as “smaller” but OK.) but there is a second spot that is “of concern” to both of them. Dr. S wants to do another MRI, six weeks from the last one, and he wants to see me this week in his office.

Or something like that. It's all a little bit of a blur. I think I went into shock.

I was in a hurry and didn't really want to explain so I tried to pretend that nothing was wrong, failing miserably. I can't put into words how it feels to sustain that kind of blow when you least expect it and then to just keep going, as though nothing has happened. I've done it before but I have never been very good at it.

It's a testament to the (maybe) new school that the presentation and tour were absorbing enough that I actually remember chunks of the evening. What I do remember well is that when I got home, I crawled into bed and had a good cry.

The next morning I got up, got the kids out the door, went for a run and then had a latte on a patio in the sunshine. I felt better.

It's getting harder to pick myself up, dust myself off and keep going on with my life. I'm bouncing back a little less high and it's a little easier to knock me back down again.

While I have had truly excellent, cutting edge care every step of the way, I wish that communication were better. I wish my doctors spoke with each other. I wish we planned next steps together. The process shouldn't wear me down. The disease is hard enough.

I'm feeling a little less resilient these days. Eventually, every ball stops bouncing, rolls for a while and comes to a stop.

I'm tired of this metaphor. I need to come up with a new one.

Monday, April 13, 2015

so this happened

On April 1st, I had a brain MRI

Then, last week, the very competent secretary who works with my neurosurgeon, left me the following message on my voice mail: "The written report is not yet available but Dr. S. has looked at your MRI and he says that it looks better. He says he doesn't need to see you but that you can make an appointment to see him if you want. He wants to do another MRI in three months."

And that was it.

Yes, it's good news. Yes, I'm relieved. But I'm also confused.

How is it "better"? Has the mass stopped growing? Become smaller? Is he now convinced that it doesn't have to come out? Has the other reported mass (deeper in my cerebellum) disappeared?

I called the secretary back the next day but she had no further information. She did offer to send an email asking for the written report to be expedited.

I still don't have it.

It occurred to me that the radiologist (who writes up the MRI reports) has been the most pessimistic player in this game I've been involved in since late summer. His report prompted Dr. G to tell me I had a new tumour (the radiation oncologist and neurosurgeon weren't so sure and, after more testing, decided it was necrotic - dead - tissue caused by radiation). 

It was the radiologist who wrote that I had a recurrence and a new tumour, most recently.

And the radiologist wrote the report that I saw at appointment with the neurosurgeon on March 12. Dr. S was concerned enough to suggest I was going to need surgery but not convinced that we were looking at a new tumour. He was outright dismissive of the existence of a new tumour, deeper in the cerebellum.

Now that Dr. S has put off surgery, at least for the next three months, I need to know what the radiologist (Dr. Doom-and-Gloom) has to say.

Tim and I have both noticed that oncologists and surgeons seem to have little respect for radiologists (it's like they barely graduated from high school, let alone medical school). Still, we'd like to get our hands on that written report.

I've had to sit with this information for a bit before I could write about it. This is partly because it's awfully difficult to explain. I've done my best but feel free to ask questions in the comments or contact me directly. 

It was also a shock.

And I was a little embarrassed. First I have a brain tumour. Then I might not. Then I don't. Then I do. And now - maybe not?

I feel like the Boy who Cried Wolf (the Girl who Cried Tumour?), except that I haven't been playing at any of this. And I know that no one who cares for me is actually going to be disappointed that I'm not getting ready for imminent brain surgery.

I want that report. I want the results of the bone scan I had the next day (I'm trying not to be worried that I can't get a nurse to give me those over the phone).

And then I want to try and live my life to the fullest, with all it's ups and downs. Will you help me?

Friday, April 10, 2015

driving dreams

As some of you know, I don't drive. I've had several false starts. I even passed my in-car test when I spent a summer in the Yukon in 1986 but didn't take the final step to have that license validated.*

In total, I have had a "learner's permit" three times, taken drivers' education courses twice (not finishing either time) and taken countless in-car driving lessons. There have been many people who have offered to drive with me so I could practice who have not wanted to repeat the experience.

Still, "get drivers' licence" has been carried forward on my "to-do" list for many years. I've never quite given up on the idea but I never seem to follow through. I think I have a phobia at this point.

A while ago, I had two dreams in the same night (before the latest round of MRIs and meeting with the neurosurgeon. My brain worries were present but not front and centre). Both were about driving and were so clear that I wrote them down when I awoke. If you know anything about driving dreams, I'd love to know what you think.

Dream 1:
I had borrowed a red van from a friend. It was parked in front of the neighbours' across the street . This is not a legal parking spot. I decided at the last minute that I shouldn't drive the van on my own and I went to get Tim (my spouse). When we got back, there was a big truck parked where the van had been surrounded by workers loading it up. The red van was nowhere to be seen.
I asked one of the men unloading the truck about the van and he told me they moved it one street over because it wasn't supposed to be parked there and they'd needed the spot. He told me, raising his eyebrows, that I had left the keys in the ignition and gave them to me.

Dream 2:

I was at a strip mall with Daniel (my 11 year old) and we got into a grey four door sedan, him on the driver's side and me on the other. We started going and I kept saying to Daniel, “Sit up!” “Press the brakes!” We drove through the parking lot without hitting anything or anyone and then through a 4 way intersection and up a side street filled with pedestrians. We even drove by a baby crawling along the side of the road, passing very close. The baby seemed oblivious. The street ended at the top of a hill and we coasted to a stop.
We got out and folded the car up and wheeled it like a wheelbarrow back down the street. I went to find Tim so he could drive us home. I was very relieved but also worried that someone had reported our license plate or caught us on camera.

I borrowed a book from the library about dreams. There was a whole chapter on cars that didn't really speak to me, except for the following "the movement of your car is a metaphor for the way you're trying to make progress in life and the extent to which you feel in control." There was nothing really helpful about kids (nothing about narrowly missing babies or having your kid drive the car) and nothing about a fear of driving.

A key thing about both dreams is that while they were anxiety provoking, both had positive outcomes. I got the van back in the first dream (even though I'd left keys in the ignition) and no babies were crushed under the wheels of my car in the second. It's clear that I'm feeling a lack of control but there must be something good going on between my ears if things ended as they did. It is interesting to me that, in both cases, I felt embarrassed and worried about getting into trouble.

What do you think? I'd love to know about any similar dreams folks have had and where you have turned to find answers.

*The driving tests in Ross River, where I was living, were at that time administered by the RCMP. They gave me a letter that said I'd passed but I was supposed to take it to White Horse to be validated and get an official licence. I never got around to it, perhaps because I didn't really believe that I deserved to have passed. Ross River had only one 4-way intersection, no traffic lights and no place where I could parallel park. Still, I managed to make a right turn into the left lane, facing what would have been on-coming traffic, had there been any.

I might have been a little intimidated by the armed police officer administering the test. I still can't believe he passed me.

Wednesday, April 08, 2015

too much. all at once.

Last week, I had CT scans* and treatment on Tuesday, a brain MRI on Wednesday and a bone scan on Thursday. 

There was also an incident on Tuesday evening with one of the boys, which culminated in the following text from my beloved: 

"I now know what projectile vomiting looks like. Can you check Groupon for car detailing deals?"

All is well (we've come to realize that vomiting is an excellent response to anaphylactic allergies) but if none of us has to see the inside of a hospital for a while, that would be just fine.

As I type this, I'm reminded how grateful I am for our health care system. I shudder to think how big the bills would have been, if we had to pay them. We don't have to justify any of these costs to an HMO. We needed care and we got it. 

*I have the results of the CT scans. My abdomen, pelvis and thorax are all still free of visible metastatic disease.