Fifth Time’s the Charm

Today marks cycle 8 of my every-three-week chemo schedule. I’m tolerating it pretty well, I’m happy to say. The antiemetics work wonders, and I just plan for about a week of being super wiped out, so it is manageable.

Oh, did I mention that I had an allergic reaction to the carboplatin during my fourth infusion? Thankfully it was caught and reversed quickly, so no big deal. But it does mean that I cannot have carboplatin again. I was only scheduled to have 4 rounds of it anyway this time, but it is a little scary knowing that it is out of the arsenal now.

Also, fluid has slowly been building up around my right lung (the good lung) so I had a thoracentesis and they drained a liter of fluid. Sigh. I continue to drain my left lung at home every three days, so the fun goes on.

In some very exciting and hopeful news, my wizard from Colorado told me that he has been growing my cancer cells in his lab and he thinks he knows why my cancer has stopped responding to the TKIs (yay research!!). It seems my cancer has developed a resistance called IGF1R, Insulin Like Growth Factor 1 Receptor. AND there is a TKI that targets this, ceritinib.

Commence the hoop jumping! These drugs aren’t cheap, so step one was getting it approved by insurance (it is approved for ALK, not ROS1) which we did! But the copay was really high, so the hospital helped me apply for a program through the manufacturer. After lots of paperwork, hours on the phone, and shipping delays, I finally got the meds on Monday. The moral of the story for my fellow patients is that there is usually work around these high prices, so don’t give up.

The plan now is to continue on with the chemo in addition to my 5th TKI. While ceritinib worked great for my cells in the lab, there is no guarantee that it will work as well in my body, so the safer route is to keep the chemo going and add the new med.

To recap my years spent on TKIs:

1. Crizotinib = November 2013-December 2017 (4 years and 2 months)
2. Entrectinib = December 2017-October 2018 (11 months)
3. Lorlatinib = November 2018-January 2019 (3 months)
4. TPX-0005 / Repotrectinib = February 2019-July 2020 (18 months)
5. Ceritinib = January 2021-???

Let’s hope that my wizard’s theory is correct, and that ceritinib will give me a nice, long run.

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.

What a Week

A lot happened last week. In a nutshell, I’m out of my clinical trial, and I spent 4 days in the hospital dealing with malignant fluid around my heart. 

I had been doing my monthly clinical trial visits virtually since March, but as things have been getting more worrisome (increasing shortness of breath) my Wizard wanted to do a full evaluation in person. So, I went from extremely careful pandemic behavior to getting on an airplane. I’m very glad I went. I had a full battery of testing, and discovered that I had fluid around my heart (pericardial effusion). My doctor was going to admit me on the spot, but understood that I wanted to come back home first, and felt it was safe to delay to later that day. My beloved family picked me up at the airport and dropped me off at the emergency room. At least I got to spend a few minutes with them. 

Thankfully, the heart issue was not what they considered “emergent” (no need to rush right into a procedure), and they were able to wait until the next day, make a plan, and get me scheduled. And I got a private hospital room, so that was nice. 

They placed a small drain into the pericardial sac and drained out the fluid. I had to stay in the hospital for three days to observe the draining, but it was largely uneventful (thankfully). The next steps are a follow up echocardiogram and then getting scheduled to start chemo. 

It’s funny looking back on how I have changed since I did chemo in 2013. Then, I was much more Season 1 Buffy (“give me something pointy and tell me where the big bad is”) and this time around I’m finding a lot of resonance with Season 6 Buffy (“Life isn’t bliss, life is just this, it’s living”). 

I’m going through the very painful repotrectinib withdrawal, which is certainly impacting my mood. The aches are remarkably similar to the entrectinib withdrawal I went through in 2018, so at least I know what these awful muscle pains are about. 

I’m holding out a lot of hope for my chemo redux. It worked amazingly 7 years ago, and all of my treatments since then have been laser-focused on the ROS1 mutation, so it makes sense to go more broad-spectrum.  

If you have some well-wishes to spare, I will happily accept. This is kind of a lot to absorb, plus pandemic and all. 

I love this song, and I feel like it could be the theme song for 2020. 

“Anger wants a voice, voices wanna sing 

Singers harmonize till they can't hear anything 

I thought that I was free from all that questionin' 

But every time a problem ends, another one begins 

And the stone walls of Harmony Hall bear witness

Anybody with a worried mind could never forgive the sight 

Of wicked snakes inside a place you thought was dignified

I don't wanna live like this, but I don't wanna die.” 

- Vampire Weekend’s “Harmony Hall”

seven.

Today marks 7 years of (knowingly) living with metastatic lung cancer. 7 years since I was told I had 8 months left.

It also marks 78 days in lockdown because of Covid-19.

Why don’t I count the cancer life in days? If I did it would be 2,557. That’s a lot of days.

Things are bumpy on this roller coaster. My latest scans showed likely progression in both the brain and lungs, so we are mulling over next steps.

I’ve never been good at predicting the course of events - I never would have imagined, 1 (or 7) years ago what today would be like.

So, I hope to see you all back here when I write “eight.” Let’s hope we will find that things are sorted by then: vaccine widespread, lives calm, bellies fed, roofs over heads, justice served, and cancer cured.

Metastatic Cancer and Pandemics

As someone who has been living with the specter of death breathing down my neck for over 6 years, existing with an uncertain future, it occurs to me that the coping skills I have honed could be helpful to my dear readers.

As I said to my husband in the early days of the pandemic, “it seems that the rest of the world is learning what our life feels like.”

Those of us with metastatic cancer know full well the fear of not knowing what next week will look like, how uncertain the future is. We know the terror of seeing people in your community getting sicker and dying, wondering if you will be next. When every cough or ache could spell your greatest fear. Are you suddenly living a life totally different than the one you were on course to lead? Yup. Sadly, this is well-trod territory for us. I’m so very sad that others are feeling this horror.

Cancer also serves as a magnifying glass for the strengths and weaknesses in your life and society at large. We are discovering the same is true of a pandemic.

As I say whenever I meet someone newly diagnosed,
Welcome. I’m so sorry you had to join us.

So how have I managed to get out of bed every day with this weight on me for close to 7 years? (Well, on really bad days, I don’t.)

My overarching approach is compartmentalization. I take all those terrifying thoughts and pack them into a box and put them up on a shelf. I think in much smaller time frames, and generally avoid thinking into the future. How can I imagine the future when I was told I don’t have one?

There is a similar struggle in this CoronaLand. Who knows what things will be like in a month or even a week? Think smaller. Think about this day, this hour, maybe even this minute. I am breathing. There is sunshine. I can hear a bird. Right now I want to see how this episode of Property Brothers will end.

Sometimes I take the box of fear down off the shelf and sit with it for a while, going through each scary shadow, looking through each awful moment. During those times I find it helpful to seek out information. What new treatments are on the horizon? What glimmer of hope can I hold onto to push away the terror?

I like to call my next strategy Grief and Gratitude.

Make sure to let yourself grieve.
Grieve. Grieve. Grieve. This sucks. Acknowledge all the losses. Big and small. Grieve the future you thought you had. Grieve the missed class trips. Grieve the fact that your beloved small business is on life support. Take time to honor and grieve for it all.

Then when the grief lets up, discover something you can be grateful for. It can be big or small, but I find it enormously valuable to recognize the good things even when everything feels so hard.

People talk a lot about “after.” How we just need to get through this and get back to normal.

This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS.

One of my mantras over the past few years has been “this is the life I’m trying so hard to stick around for.” It helps me remember to find something to appreciate even in the hard times.

And when the absolutely stark raving terror of it all becomes overwhelming, distraction is my recourse.

Watch crappy TV. Go outside. Sing really loud. Jump up and down. Go for a walk. Help someone else. Do something to change your surroundings and your focus so you can give your mind a break from it all.

This, too, will change. Parenting and cancer both taught me that. Just when you think you have it all figured out, it will change. Sometimes for better, sometimes for worse, but always different.

My wish for people in this pandemic is that the worst they get is really bored. It’s the same wish I have for my cancer buddies; that their scans may be boring. Their lab results a big yawn fest. That their consults are not even worth talking about.

Just nice and boring.

——-

I’d be remiss if I left this post without any sort of health update!

I am still on my fancy TPX clinical trial (cycle 16!), and it seems to be holding the brain mets steady. I’ve been having a recurring pleural effusion, and had been going into the hospital for regular thoracenteses. With the onset of the pandemic, I finally overcame my aversion to the pleurex catheter, so I now have a tube implanted in my chest so that I can drain my lung in the comfort of my own home. Actually, Jason gets the privilege of draining it every-other-day. He jokes that he is no longer brewing beer, so instead he monitors the flow rates of malignant fluid being suctioned out of my thoracic cavity. Gotta keep those skills sharp.

It’s funny what you get used to. The kiddos now run in and out of the kitchen arguing and asking for things while Jason and I are busy draining my lung. This is all par for the course in our lives.

As someone who is unlikely to survive Covid-19 should I catch it, I am deeply moved by all the people who are sacrificing to help others - and I’m not just talking about the amazing healthcare and essential workers.

I mean all the people who are selflessly accepting this great disruption to their way of life in order to protect others in society. People accepting hardships to help save other people.

Makes me proud to be human.

Bumpity Bump Bump

It’s about time I update this little blog.

I’m doing decently, much better than I was when I wrote the last post. The increase in steroids has proven to be incredibly helpful, making it much easier for me to function. My balance is still a mess, but I no longer feel motion sickness when I move my head (that was pretty awful). I’m embracing all the fun steroid side effects (hello again, puffy face), because I feel so much better thanks to these not-so-fun meds.

Currently, the main issue is my balance. I’m fine when I’m seated, but I feel wobbly as soon as I stand up. If I’m holding onto something, I’m pretty stable, so I casually lean on things like nobody’s business. Really, if there were a contest to see who could nonchalantly lean against any wall or ledge, I’d be the champ.

The general consensus from doctors across three states is that the changes in my cerebellum are treatment effect, rather than new growth. The trial drug is known for causing balance issues, so who knows what is causing what. The plan now is to watch and wait, and hope that my cerebellum can heal and nothing starts growing again.

Just another bump in the road.

Meanwhile . . .

My latest chest CT showed that I had a small pleural effusion. That was a shocker. These are not uncommon in the lung cancer world, but it was a brand new one for me. I haven’t had a thing wrong with my lungs since 2013 (kinda funny that my lung cancer has mostly caused brain issues for the past 6 years). I had a thoracentesis, which drained 240 ml of malignant fluid out of my chest cavity. It was much less scary than it sounded, though I had to go for the procedure twice since they told me you can take blood thinners the night before (you can’t). Reminder to self - if you are being given instructions over the phone about an upcoming surgical procedure and they sound incorrect, question them. Don’t become self-conscious about second guessing instructions too much.

The upside of having malignant fluid drained from my body was that I was able to ship it to Colorado and donate it to the ROS1 project, so they can grow cell lines for research. Precious fluid!

Another pothole in the pavement.

Also meanwhile . . .

My tumor markers continue to rise, so who knows what is going on, except that likely trouble is brewing somewhere.

Bump bump bump.

I recently read The Miraculous Journey of Edward Tulane, and it is hard not to feel grateful for what you have after reading that.

"Edward knew what it was like to say over and over again the names of those you had left behind. He knew what it was like to miss someone. And so he listened. And in his listening, his heart opened wide and then wider still."

"But in truth,' said Bull, 'we are going nowhere. That my friend, is the irony of our constant movement."

If you haven’t read that book, do yourself a favor and check it out. The world feels a little bit more doable afterward.

"If you have no intention of loving or being loved, then the whole journey is pointless."

I couldn’t resist that last one.

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.