A Reprieve

I had scans following two cycles of chemo and it seems that the medicine is working its magic. The cancer has been knocked back in my lungs and my heart, the new stuff that showed up in my abdomen in July is gone, and sclerotic bone mets have appeared, which indicates that they were hiding out but are now dying. (I guess I also had some broken ribs?!? Who knew.) Much to my surprise, even my brain MRI showed improvement, with mets and edema showing reduction. Whew!

Cancer is a thief that steals by inches and by miles. Sometimes stealing pennies, sometimes pearls.

For the past few months it’s has stolen my breath. It’s startling to look back on how frail I was just a few weeks ago. Jason had to push me in a wheelchair for my first chemo, since I was too weak and short of breath to get there under my own steam. During that time, I couldn’t walk more than a few steps.

And now, thanks to chemo, I can walk again. I can yawn again. I can hold my breath. I can (mostly) take a deep breath.

I still have a very long way to go, but I can feel my lungs slowly getting stronger.

My balance issues have remained, meaning it wasn’t the trial drug causing those. They are likely the result of brain surgery and several bouts of radiation. Which also means there may not be a ton of improvement there, even with effective cancer treatment. Wobbliness may just be part of me now.

Cancer has stolen my gracefulness. It has stolen my handwriting. It took my naïveté years ago.

But chemo has given me back my breath, so I willingly continue my cantankerous partnership with this prickly friend.

I can go for a walk again. I can cook a meal again. I can take my kids to the park again.

I am slowly clawing my way back.

Unclear

Things are not great in CancerLand. My rising tumor markers and MRI changes have confirmed that the spot in my cerebellum has grown back and is starting to cause symptoms.

The great/terrible/ironic thing is that I’m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October.

My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell’Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone’s shoulders without batting an eye. Flowers for Algernon’s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them in my current wobbly state. To make things even more strange, when I sit down, I feel completely normal. It’s only when I stand up that I feel like I’m on a boat.

Where do we go from here?

The best case scenario is that I can get another brain surgery, and that they can remove the entire mass from my cerebellum. Waiting to hear from the neurosurgeon to see if that is possible.

The second option is to get another round of targeted radiation to the mass and hopefully knock it out. I’m doubtful that will be possible, since it has only been 9 months since I had radiation to that area.

If neither of those are possible, I will switch to a chemo that gets into the brain (likely Temodar).

For now, I wait for the experts to weigh in on what is possible at this point.

And we try to squeeze more fun out of the summer.

Out, Damned Spot!

Clearly this cancer likes to keep me on my toes.

You may recall that I finally got some good news on my April brain scan, the first good news in a year or more. My May scan focused on my heart and bones. The heart looks just fine (yay!) but a spot appeared in my left shoulder blade.

Just when you think you can breathe easy for a bit.

It is a spot that was seen back in 2013, but that we thought was dead for all these years. I guess it wasn’t, or it is some sort of zombie cancer that is rearing its ugly head.

And I thought the pains in my shoulder were a pulled muscle from all my travel and camping fun!

The good news is that I can stay in the trial, and we are treating this spot like a single mutant clone and zapping it with targeted radiation. And I can do the radiation here in Michigan. All good things.

So on Monday I start three every-other-days of radiation. Not my first rodeo, as the nurse said, though my first time where I have to be aware of possible skin damage.

I’m going to assume the rads will take care of this Damned Spot, and that my newest magic drug will keep shrinking the cancer in my brain. May as well believe that until I hear otherwise.

Pause

I am now 9 weeks post brain surgery on my cerebellum.
And 1.5 weeks post targeted radiation to my cerebellum.
And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain.

Right now, we are in a very pleasant phase I am calling ...

The Pause.

I don’t have another doctor’s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects.

I’ll take it.

In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, and appreciating feeling relatively well. I’m sure hoping for a lot of boring news from the scan and lots of boring months to follow. These past two months have been the hardest two of the whole 5.5 years (and counting!) that I’ve been in treatment for metastatic lung cancer. Boring sounds really good to me!



*one of the side effects of the new drug is that it makes your cholesterol and triglycerides go astronomically high. I am currently on a low-carb diet to see if I can get them to come down. I never knew I loved carbs so much. Or not having to think about what I can and cannot eat.

Radiating My Brain

I have completed treatment 2 of 5 for my targeted brain radiation. You may recall that, since there WAS living tumor in the section they removed from my cerebellum, we decided to radiate the perimeter around what was removed, in case there were any tumor cells there.

Well, let me just say that

Radiation

Is

Kicking

My

Butt.

Check out the imprint the super-tight mask leaves on my face.

It wears off after about an hour.

I was mentally prepared to feel wrecked after surgery; I was not so prepared for this. In addition to the exhaustion, I have had awful headaches and nausea. I talked to my Rad Onc about this and he said it was from brain swelling, and prescribed a course of steroids. Yay, more steroids. But if they stop the headaches, I’m happy to take them.

The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine.

It’s still Lung Cancer Awareness Month, and I still have lung cancer, and I’m still raising money to fund research specifically focused on my rare ROS1 mutation. I’m trying to reach $8,000 by the end of the month. Here’s the link: https://www.supportalcf.org/ros1/ToriTomalia

If Brain Surgery Wasn’t Enough

The good news is that my brain surgery recovery is coming along really well. I’ve even been approved to start driving again, so Jason is taking me out for some driving practice this weekend.

However, life with metastatic lung cancer continues to keep me on my toes. I’ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments.

I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn’t know I had.

On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the following week. The main side effect is fatigue (but I’m not even over the fatigue from the surgery yet!).

I am due to begin the EAP of Lorlatinib on Tuesday or Wednesday, with all the side effects that come along with that. One of which is fatigue. Oh my!

Don’t get me wrong - I am immensely grateful to have treatment options.

I am grateful there is another targeted med for me to switch to. (And another in trials after this one.)

I am grateful that I am well enough to withstand all this treatment.

I am immensely grateful for more time with my family.

But I have to admit that this has been a lot to deal with. I know that every day I am in treatment is another day I get to live, and for that I am grateful. But some days this is almost overwhelming.

I am very grateful for the support of my community - support that I am going to have to lean on again over the next few weeks.

Thank you so much to all the folks who brought meals to my family during my recovery. It is such a comfort. I can’t help but share this particularly adorable themed meal we received. Great work, Jennie, and it tasted great, too!

In other news, November is Lung Cancer Awareness Month. The ROS1ders are raising money for more research into treatments for our rare cancer. I started this fundraiser back in 2016, for my 40th birthday - and we raised over $6,000! I am reviving it, and hoping we can hit $8,000. Here is the link to donate: https://www.supportalcf.org/ros1/ToriTomalia

Also - make sure you get out and VOTE on Tuesday. As a naturalized citizen, I take voting very seriously. So seriously, in fact, that I voted absentee and mailed in my ballot at 4 am, just before we hit the road for my surgery. I didn’t know what kind of shape I would be in on November 6, and there was no way I was going to miss voting!

Batten Down the Hatches

I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4.

I’m oscillating between being incredibly nervous and remarkably calm.

Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn’t anticipate any problems.

In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I’ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be.

As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and liberating feeling.

Many heartfelt thanks to all the people who have reached out to offer help, meals, prayers, and well wishes. My friend Meriah is organizing all of this through Lotsa Helping Hands, so if you would like to join the “Tomalia Support Team” to learn about practical ways you could help, visit the website and you can learn more (our zip code is 48104).

I will happily accept any thoughts and prayers for strength to me and my family, and for my surgeon to have steady hands and a clear mind on Thursday!

The Whole Long Story

I don't even know where to start. The past 4 days have been completely absurd.

As of Monday morning, I was out of the clinical trial because of progression in the brain, according to the MRI. The lovely ROS1 experts that I emailed asked me (repeatedly) to make sure this was definitely progression, and not a response to previous SRS treatment. I asked this question several times, but was repeatedly reassured that it was, in fact, progression. You may recall from my last post that I reached out to my rad onc to confirm that this was progression, as he was the person who has followed my brain MRIs very closely over the past 3 years and has performed all the SRS. He said he would ASAP, but was travelling and wouldn't be able to until Tuesday. 

I was sent home Monday afternoon without a plan, but an appointment with my old oncologist on Tuesday (which I had to insist on getting, rather than waiting several weeks for her next available appointment). 

I spend Monday afternoon reaching out to all the hospitals in Michigan that run the trial for Lorlatinib (the next ROS1 inhibitor that is in the Expanded Access Program). I had a very frustrating conversation with the nurse fielding the calls about the trial:
"You have to have ALK for this trial. It says right here it is only for patients with ALK or a rossey rearrangement."
"Yes. That says ROS1. That's what I have."
She also told me that the washout is 4 weeks long, which is not correct at all. 

Tuesday morning I meet with my oncologist who acts quite alarmed at the MRI results, says I need to take steroids and I shouldn’t drive. She even suggests whole brain radiation as an option. I am pretty stunned by this, and tell her that I want to pursue the Lorlatinib trial. She has a contact at Karmanos who runs the trial, and is able to get me an appointment on Thursday afternoon. 

I spend the rest of Tuesday scrambling to collect all of my records that I will need to hand deliver to Karmanos on Thursday. I watch the person working at imaging’s jaw drop when she opens my file. Almost 5 years of treating metastatic lung cancer means I have generated A LOT of CT, PET, and MRI images. 

I download the Lyft app and try to figure out how I am going to do everything I need to do if I can’t drive. I start on steroids, which are not fun (my body aches, I’m exhausted but can’t sleep). 

Late Tuesday afternoon I get a message from my rad onc saying that he and neuro-oncology have reviewed the MRI and say there is no progression, just response to treatment/SRS. 

THERE IS NO EVIDENCE OF PROGRESSION. 

What?!? 

I quickly contact the trial doctor, my oncologist, and the super amazing trial coordinator. I get a note back from the trial doctor that he will try to get me back in the trial, and that the trial coordinator will contact me on Wednesday to set everything up. 

Wednesday morning I send an email to the trial coordinator asking if there is any update. She replies quickly and tells me that there are lots of emails going around but there is nothing official. 

The hours pass…. 

I hang out at home since I am not allowed to drive. I order things from Amazon since I cannot run errands. I line up childcare for the kids on Thursday, since Jason and I might have to go to Karmanos to try to get into the new trial if they cannot undo my dismissal from the entrectinib trial. 

I send the trial coordinator another note, asking if there is any more info. She quickly replies that my doctors are still trying to make a decision. 

Make a decision? I thought it was already decided? 

I reply to her that, if my voice means anything in this decision, I feel very strongly that I should be given more time on the trail. She said she will make sure the trial doctor understands this. 

By now it is after 3 pm and I’m getting nervous that the end of the business day is coming and I still don’t know what is happening. I contact my rad onc again, asking him to please contact the trial doctor since there seems to be some misunderstanding about my MRI. 

I receive a note back that my lovely rad onc has just personally sat down with the trial doctor and walked him through my entire history of brain mets and SRS treatment, slide by slide, MRI by MRI. (I have been going to him for 3 years for brain met monitoring and 3 SRS treatments, and have MRIs every 2-3 months. This is a huge job.) 

Then my phone rings, and it is the trial doctor. He tells me they are putting me back on the trial, and that the trial coordinator will set up an appointment for me to come in Thursday morning to pick up my pills. He says that I don’t need to have driving restrictions and I can taper off the steroids. He didn’t realize that I had had all those spots treated with SRS, and there were different styles of machines doing the various MRIs, so it looked like lots of progression to him. We discuss the Karmanos appointment, and we decide it is still worth going because I will likely need Lorlatinib at some point, and it seems smart to me to get myself into the system and meet the trial doctor now that I have the chance. 

The wonderful trial coordinator emails me moments later and says to expect her call in a few minutes. She calls right on time, tells me she had already contacted the pharmacy to tell them not to throw away my pills (the thought that they would just throw away $10k+ pills is horrifying – but that’s a post for another day). She gets all my appointments for the next morning put together in record time. She is wonderful. 

Thursday morning I go in, get blood work, officially get back on the trial and I TAKE MY PILLS! 




I grab a quick lunch and head to Detroit for my 1 pm appointment at Karmanos. When I arrive to check in I am told that my appointment has been cancelled. 

O. M. G. 

I ask if there is any way I can get in to see the doctor, even briefly. I have already sent my paper records over and have the image discs in my hands, I filled out the whole patient history in their online system, and have submitted everything. I dotted all my Is and crossed all my Ts. Can’t they do something? I’m willing to wait. 

So wait I do. 

Finally, at 4:30 pm I get to see the doctor. She explains that my oncologist had contacted her and said that she needed to fit me in because this was a very pressing situation, so the Karmanos doctor agreed. When my oncologist found out I was back in the trial, she called Karmanos and said I wouldn’t need the appointment. This all makes sense, but wow, after the run around I had been getting, it was icing on the cake. 

We had a brief talk about the Lorlatinib trial, if I was likely to qualify (it seems likely that I would, but she is going to confirm that they allow CNS only progression, and I asked if they have parameters for minimum lesion size). I asked if she has ever treated a ROS1 patient before. She has treated 5 which is decent I suppose. She seemed fairly well versed in which drugs potentially work for ROS1, even mentioning brigantinib’s pre-clinical findings. She wasn’t aware of TPX-0005 or which acquired resistance mechanisms were the common and challenging ones for ROS1 (“you’re teaching me!” – I do wish doctors didn’t seem so surprised that a patient knows something). 

So, I finally finish up at nearly 5 and text Jason that I am just leaving. I had thought I would be back in time to pick up the kids from school, but obviously that didn’t happen, so he had already had to leave work and run the kids around all afternoon. He had to be back to teach at class at 7 pm, so I was keeping an eye on the time as I was driving to give him an update (traffic made the trip home much slower). But then both my phone and backup charger decided they were just done with all of this and punked out. Frankly, I don’t blame them. 

But I got home and Jason got to class and the kids got fed and I got my drugs, so all's well that ends well, I suppose. 

Though, I find the events of this week incredibly disconcerting. I know I don't have a vanilla cancer. I know that ROS1 is very rare and that most centers only have a handful - at most - of ROS1 patients. I know that I was the first ROS1 patient at the U of Michigan. I know that we are in uncharted territory with my treatment path – approaching 5 years with metastatic lung cancer - so they are learning as they go. But I think what bugs me is that they don’t realize that a patient who has been living with this for 5 year has probably learned a thing or two.

I have been playing this chess game for a long time now. I know that my next brain MRI could very well show actual progression, and I will be right back where I am now. But if I could possibly get another 6 months or more on this drug before I have to move on to another, I cannot sacrifice this knight carelessly. I'm hoping to keep playing this game for a long time.

Bad-A$$ Birthday

I started off my birthday this morning in the most bad-a$$ way possible - by getting kicked out of my clinical trial. Yes, that’s right, early this morning, as I waited to get my blood drawn, my MRI results were released to my Patient Portal, and with a pleasant little “ding” I discovered that my fancy new drug has not been living up to the hype, and the cancer has progressed in my brain. I’m still kinda hazy on the details, as the report was uncharacteristically vague; no actual measurements or anything, almost a poetic take on MRI reading. But, nonetheless, I am kicked off the trial, the remaining pills were confiscated, and I was sent on my way. No plan, just set adrift.

I have an appointment with my old oncologist tomorrow; they initially said her next available appointment was in APRIL, so I used my bad-a$$ Birthday Powers and helped them find one much sooner.

I sent some bad-a$$ emails to some wonderful ROS1 experts, who sent lighting fast replies (before I even got called in to see my trial doctor) with thoughts for potential next steps and caveats. I also emailed my rad onc who lived up to his title and agreed to review my MRI and help me come up with a bad-a$$ plan. I sent bad-a$$ emails and left righteous voicemails to the Lorlatinib trial sites in Detroit so I can get the bad-a$$ ball rolling on my potential next treatment plan.

I was not bad-a$$ enough to select “Death By Chocolate” for my birthday cake. I thought “Chocolate Spring” sounded more auspicious.

I played a bad-A$$ game of Skip-Bo with the fam.

Forty-two. The meaning of life achieved. Still hoping for more bad-a$$ trips around the sun.

The Best Bad News

I'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news.

The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.

I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.

In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)

In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)

In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.

I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.

Then how did each scan show no growth, you wonder?

MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.

We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.

So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.

I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!

Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.

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.

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.

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.

Sigh.

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.

Adventures in Brain Metastases

I am not new to the world of cancer. I survived childhood osteogenic sarcoma, and have been living with stage 4 non-small cell lung cancer for two and a half years. I have had my share of chemotherapy drugs (adriamycin, ifosfamide, methotrexate, carboplatin, Alimta, Avastin), I have had several radical surgeries to save my right arm, and I have been benefitting from a cutting edge targeted therapy. But, with all of these treatments, the one I have never experienced is radiation.

Until this past Monday, that is.

As I wrote about in "The Other Shoe," my regularly scheduled MRI showed that while the targeted medicine I take for my ROS1 mutation is doing a fabulous job controlling the cancer in my body, some sneaky cancer cells made it into my brain. So, on Monday, I had the super fun experience of stereotactic radiotherapy.

The morning started bright and early with a 7:00 a.m. check-in. I was told to take my Valium and Norco in the parking lot, so that they would start working by the time it came to put on my fancy head piece. You see, because the machine is precise to the millimeter, they need to hold the patient's head completely still. They achieve this by using this wonderfully attractive piece of hardware:





They numbed my scalp with lots of lidocaine and proceeded to clamp what my husband described as "skateboard hardware" onto my head. Seriously, it looks like stuff you would find in your basement workshop.



Next, they took me to have a CT of my head, with my fancy headgear clamped into the machine so that they could plan out exactly how my head would match up with their lasers.

By now, it was about 9:00 am. Frankly, the worst part of the whole experience for me is that I don't tolerate narcotics well at all. I know morphine makes me throw up, and I guess Norco is a close enough cousin to have a similar effect. By this time, I was feeling pretty green, but a dose of Zofran helped enormously. Then, I just had to wait around for several hours while they did all the planning for the actual treatment. I had packed the iPad and earphones, planning for my husband and I to watch movies while we waited, but alas, I didn't realize I wouldn't be able to wear my glasses with the headgear! Here is my attempt to balance them on the contraption. Total fail.





So, my amazing husband/caregiver Jason and I just sat around and chatted for a few hours. I got used to the headpiece fairly quickly, and it soon just felt like I was wearing a very heavy hat.



At noon, they had me take a dose of dexamethasone, a steroid to reduce any swelling from the radiation to my brain. The treatment was scheduled for 1:30 p.m., so at 1:00, they had me take another Valium and norco. By the time they wheeled me back for treatment, the duo was kicking in and I actually slept through the whole process. I remember them clamping my headpiece into the machine, and asking a few times how I was doing, but the next thing I knew they said, "OK, we are all finished!"

They removed the headpiece and sent me on my way. By now, the Norco-nausea was pretty bad and I promptly threw up upon getting home. Yay, narcotics. I slept most of the afternoon and evening. The next day, I felt groggy and had a pretty intense headache, but I decided to go the Tylenol route (no more Norco for me!) and that actually helped take the edge off quite a bit. By Wednesday, I was feeling much more like my old self, just a bit tired, and I still have patches of my scalp that are numb, which is a bizarre sensation.

I will have a follow-up MRI in January. Radiation keeps working for many weeks, so they won't know until then how it went. Fingers crossed that this is just a little bump in the road and I can keep going along with my targeted med Xalkori. I continue to marvel at modern medicine!




Originally published at: http://www.curetoday.com/community/tori-tomalia/2015/10/adventures-in-brain-metastases

Cancer On My Mind

Ha ha - I couldn't help myself.

My dedicated readers will recall from my last post, "The Other Shoe," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain. 

So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc!

Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know details down to the millimeter.

The good news is that, as far as they can tell, the two tiny spot were not actually mets at all, so there is just one met to treat. Who would have thought I would be happy about being told I have one brain met? It's all about perspective. Maybe they should take this approach with all diagnostic testing.

My SRS is scheduled for Monday, October 26. They do the planning scan in the morning, then I hang out all day while they sit around and chat plan my "brain surgery" (that involves no cutting), then they do the procedure that afternoon. They said to expect to be pretty wiped out the next day, but I shouldn't experience any major side effects.

Oh, technology!

On the home front we have done some major rearranging of the rooms in our house. It is something we have discussed several times, but hearing that the cancer is on the move again pushed us to take the plunge. The kiddos now all share the largest room, an odd-shaped attic space that is actually a much better room for kids than it was for Jason and I. Parts of the room are too small for an adult to stand upright, and there are weird little nooks that were kind of wasted space for us. Now the kids have an art nook, and dress up corner, and a comfy reading spot. And they are still young enough to think it is cool to all share a room. Jason and I have one of the rooms downstairs now, and the other room is a guest room/study. Knowing that we have a space where grandparents can sleep when they help us out is a great comfort, and it helps ease the worry that we may be needing more help in the future.

AND I got to do something I've wanted to do since I was a kid. I always said if I ever owned a house I wanted to paint it. Not in the normal paint-a-wall way, but to just grab some paints and start decorating it. So, we all did just that and painted the stairwell leading up to what is now the kiddos' room. The kids have asked if we can do this every day, and there are still blank spots, so why not?

The Other Shoe

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/09/the-other-shoe