Thursday, June 02, 2016

How Much Do You Want To Know About Your Cancer?

I came across this NY Times article, "How Much Do You Want To Know About Your Cancer," and I was moved to comment. Apparently I had more to say than their character limit, so I thought I better blog about it! I'd love to hear other people's perspectives.

The article:

My response:
I am almost *exactly* the patient described in this article, with lung cancer spread throughout my bones and liver. My children, however, were only 4, 2 and 2 when I was diagnosed, and I was acutely ill by the time my doctors finally figured out it wasn't just asthma causing my intense breathing difficulties. This past weekend marked 3 years from that fateful day when I was told that I have cancer. Now, I take a targeted medicine daily to control my metastatic lung cancer. I have been through chemotherapy and brain radiation, but I am able to maintain a pretty good quality of life.

So what should you tell a patient in this situation? We need to know how very serious this is, but that there is always room for hope. We need to know that you, our doctors, will stay by our side and will keep trying to find treatments as long as we are game to keep submitting ourselves to the accompanying side effects. We want you to help us live in the precarious spot of preparing for end of life while simultaneously embracing today. We want you to guide us through the wonderfully daunting landscape of new treatments and clinical trials that are the beacon of hope for those of us living with terminal cancer. We want you to help us reframe what hope means when we run out of treatment options, and we struggle to find meaning in the remaining days.

We want you to bear in mind how absolutely overwhelming this news is. For me, it took several weeks for the fog of shock and despair to lift, before I could even begin to process the enormity of this news. Perhaps the best ways I have heard it told is that "we cannot cure you, but we will do everything we can to try and control the cancer." We need you to revisit this conversation time and time again, as our understanding evolves and our treatment path shifts and changes. 

Tori Tomalia

Friday, May 06, 2016

Brain Surgery Light v2.0

Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month). 

Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.

The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward. 

The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.

See the marks it left all over me? That thing was ridiculously tight.

I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way. 

Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated. 

The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue. 

I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.

But ya know? It's not easy. So here's the straight dope.

This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again. 

Things that are hard while recovering from "brain surgery light":
- 2 screaming 5 year olds
- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.
- cleaning up a 5 year old's poop accident
- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well
- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head
- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)
- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"
- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.

So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)

So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.

And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.

Thursday, April 28, 2016

Riding the SRS Train

Well, another little bugger showed up on my MRI. The good news is that it's small (5mm) and we caught it early so SRS (stereotactic radiosurgery) is a great option again. Also, the Xalkori is still working great on the rest of my body - I've been on it for 2.5 years, which is pretty remarkable.

I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow.

What a surreal thing this stage IV life is.

So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.

Thursday, March 24, 2016

A Day I Never Expected to See With Metastatic Cancer

This weekend I celebrated a day I never expected to see – my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s. ...continue reading...

Wednesday, February 10, 2016

Parenting with a Chronic Illness

My daughter shared her cold with me (thanks, Miks) and when you mix a simple cold with a "chronic disease" like metastatic lung cancer, well it pretty much knocks me out. I've spent most of the day lying on the couch. After I picked up Zander from school, I immediately lay back down on the couch without taking off my coat or anything.

Zander froze and stared at me lying on the couch and then said,

"It makes me feel like your cancer is growing again."

I reminded him that I just had scans and the cancer is so small they can barely see it.

"I know, but it makes me nervous to see you sick."

He was only 4-turning-5 when I was diagnosed and SUPER sick, and he says he doesn't really remember those days, but I think on some level it has stayed with him.


Also, my apologies that I have neglected this lovely blog for so long. Things are good with my health, the latest MRI showed that the SRS worked super well, so the plan is to keep chugging along with Xalkori and if anything else pops up we will zap it again. All of my creative energy has been going toward getting our Pointless Brewery & Theatre up and running. Things are going super well there, and it has been SO MUCH FUN! A wise person said to me that, in addition to the fulfillment of a dream, this business is a kind of self-care for me, a way to envision the future in a way that is less painful and uncertain than my own future. I think she is correct.

Monday, November 30, 2015

Day 30: Jamie Shull, advocate. "Anyone with lungs can get lung cancer."

Lung Cancer Awareness Month 2015

Day 30: Jamie Shull, advocate
"Anyone with lungs can get lung cancer."

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole.
...continue reading...

Sunday, November 29, 2015

Day 29: Genevieve de Renne, caregiver. "Never underestimate the power of love, and the power of your own thoughts."

Lung Cancer Awareness Month 2015

Day 29: Genevieve de Renne, caregiver

"Never underestimate the power of love, and the power of your own thoughts."

How long have you been a caregiver?
"If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years."

What was it like in the beginning?
"I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear."
...continue reading...