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.


Caring friends said...

Tori, you are so brave and write so beautifully that as we read your words, we can almost feel the way you are living....a really, really hard life...a life you should never have had to live. Yet, you do make the best of what you have been dealt. We do hope that your dear children and devoted husband as well as your fine parents, siblings and ever-so-many friends do add some sparkle to your life! We have known you since you were 2 years old, recognized your exceptionally fine character and have always loved you. This blog definitely brought tears to our eyes. With love, Mike and Connie

Linnea Olson said...

Tori, it is incredibly hard and although I can't relate to every aspect of your journey, your last paragraphs really resonated. Love and strength.


Unknown said...

Tori, my heart aches for you every time I see a photo of you and the kids and each time you relate a story of the kids. Of course, I am thinking, "How long does she get?" Then I think of all the bottles of Xalkori and rejoice. Then I read about a second brain met and my heart sinks. This is the first time you have shared the horrorific results of needing to lie down when the kids need you. Love to you, love to you.
Nancy Gleason

Unknown said...

I'm sure very free kids have played with a radiation mask. My first thought was "aww poor babies to have this in their life." But then I realized how resilient they are to reenact and play. This cancer life is hard and we all have a different journey yet can totally relate to each other. Hugs to you Tori

Anonymous said...

Tori, this is an amazing story. You are a skilled writer and very strong to be telling your story out there for the world to read. I had a very similar experience with my children and my struggles with cancer. Personally I was not able to keep my mask because I couldn't bare to look at it again because of the very real and painful memories. I asked the cancer center to throw it out. I was not strong enough to bring it into my home, to let my children touch it or see it. I knew seeing it would make me cry every day going forward. This was two years ago and I have not needed it again. Reading your blog makes those memories come back strong.
Cancer, its a part of yours and my life now. You are right metastatic is forever or until it takes us. This is scary. My children are too young. They were 3 when I was diagnosed. They never knew mommy without cancer, and yet I think they know every bit of the resilient mom I am and have always been. I try always to give them normal mom.
I continue to pray that each advance in medicine brings us closer to the point that cancer is only a chronic condition. Just like any of the others, we take our medication and it keeps everything in check. Its stops working, we switch to something else....the new med helps us and works for years to come. Not a cure, just treatment. That's my wish and I think its possible.

Rrowu said...

Wow tori you are inspirational. Puts my difficult moments as a mother in perspective! Your big sister Rachele was my home birth midwife and she told me about you. I send you love and light and genuinely pray that for you and your family's sake - that the medication you are on stops any more mets appearing. �� Ange

Anonymous said...

Sorry to hear of your battle with lung cancer. It takes a lot of courage to blog about your journey and just remember that you are helping others by sharing your experience.

If you would have ever considered a trying a clinical trial, there is one for lung cancer patients - check out to see if you qualify and if there is a clinic near you.

God Bless.

Persistent, patient, chronic said...

I am so sorry to read this but relieved to see it written. It IS hard. My son is two so doesn't understand. I can only imagine how much harder it will get as he gets bigger. I am thankful to be here for him for as long as I can, but I am growing very tired of holding my head up and being strong and fine. It's hard - and I don't give myself enough space to say so or even feel it's weight. Thank you for the post - I'll be thinking of you and looking for more of your insights

Anonymous said...


It is one of the THOSE days. Wondering how long I can manage. Test results tomorrow. The endlessness of it. On the other hand, I have kids and grand kids who love me and want me to keep going. But I can hear the mix of tired and grateful in your voice. I think I can understand that mix.I thought I lost my necklace today, the one the kids wrote wishes and prayers and tucked into that little box at the end of the cord. Oh was I freaked! Rational me said, 'Mary get a grip. Get another one. The good wishes are with you." Scared me said, "It's and omen." Well, I found it. tangled in the scarf I pulled off and stuffed in a pocket because I was tired. Yeah.