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”

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.

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.

My (Slightly) Glowing Report

The MRI was definitively stable, even slightly improved. Most of the spots have either gotten a little bit smaller (by about 1 mm - but I’ll take it!) and/or become less bright on the scan. I’m calling it “stable plus.” I was very pleasantly surprised by these results! Now I am only traveling to Colorado once a month. And that will feel like a breeze!

Catching Lightning

These past two months of treatment on my fancy new clinical trial drug have passed fairly uneventfully. Side effects here and there, plus massive amounts of travel, but all in all not too much to report. Mostly, I’ve just been trying to convince myself that everything must be fine, since I feel fairly decent.

But now scan day, April 8th (our 13th wedding anniversary) keeps marching closer, and no matter how hard I dig in my heels and try to make the world stop turning, the calendar pages continue to flip. Time for me to step up and face the truth that the scan report reveals.

The gravity of these upcoming scans reminds me of my August 2013 scans (on Jason’s birthday). Those were my first scans after starting chemo, and we knew that the report would largely foretell whether or not my cancer would respond to treatment. And the report was remarkable.

But that was my first line of treatment. I am on my ... fifth (or maybe sixth?) line at this point. The odds of a good outcome go down with each one, meaning I am now deep into the unenviable category of the “heavily pretreated” patient.

But, I’ll try not to think about the outcome until I have to.

For now, I’ll keep savoring all the little joyous occasions ... trying to hold on to these ephemeral moments that slip through my fingers like sand.

Dumbfounded

And humbled.
And stunned.
And grateful.
And relieved.

I spent a big chunk of February scrambling to find a way to fund the wonderfully intense clinical trial that I am so thankful to be in.

I have received some of the kindest rejections of my life, from organizations that truly want to help patients, but for various reasons were not able to help me. We were getting closer to March, and I hadn’t booked any of my March flights yet. I was starting to worry.

So when my dear friend Lily (the same one who gifted me the ruby slippers) brought up the idea of doing a gofundme, I initially balked. I was sure I could find a foundation to cover the expense. But the days marched on, and still nothing. Finally, I gave her my blessing to start it.

And HOLY MOLY!

If you are curious to see what I’m taking about, you can
check it out here.
I am so moved by the response.

What more can you really want from life than to love and be loved? To put some good out into the world? To have a life well lived?
(I just want many more years of all of this!)

The incredible response to this call for help accentuated the strength and the goodness of all the communities (both physical and virtual) that I am so fortunate to be a part of.

And all the notes and messages! Oh my ❤️!

My most sincere thank you.


Here is my view for today. Not too shabby. Those are the Rockies in the background!

My next scans are April 8. So, in the mean time I have decided to assume that the drug is working perfectly. May as well.

Clinical Trial Lifestyle

I successfully passed all the tests and got accepted into the study! There is a weird sweet spot you have to hit in order to qualify for a clinical trial. If you don't have enough cancer in your body, you will not qualify because you do not have "measurable disease." If  you have too much, you will be too unwell to be considered as a candidate. I hit the goldilocks level of cancer! Yay for having measurable disease?!? What a strange thing to wish for.

I took the first dose on Thursday and now I just hope (and hope and hope) that it works.

I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn’t work, and he explained that a chemo/immunotherapy combo (carboplatin, pemetrexed, and pembrolizumab) would be the next step. While most drugs need to physically reach the cancer (a challenge with brain mets), immunotherapy just has to stimulate the body. Well, here’s hoping I don’t have to find out for a while.

So now I set about trying to figure out the logistics of my new life, as an out of state clinical trial patient. With appointments once per week for the first two months, this is going to get complicated.

I have contacted several foundations to help shoulder the cost of all of this travel.

Here is a summary of what I have found (hopefully this will help someone else going through this). All of the folks I have spoken to in these organizations have been incredibly kind and helpful, even the ones that didn’t work out for me.

Air Charity Network
https://aircharitynetwork.org/request-a-flight/
This is a collective of independent pilots who will fly patients for treatment.
They need at least 7 days to arrange the flight.
Challenge: small planes can only fly about 250 miles, making longer trips (like mine) impossible.

Lifeline Pilots
https://lifelinepilots.org/
Independent pilots.
Challenge: same as above

Corporate Angels Network
http://www.corpangelnetwork.org/
This organization works with corporations to let patients fly along on their private planes for free.
Challenge: apparently no one is flying between Detroit and Denver for business.

Mercy Medical Angles
https://mercymedical.org/
They work with commercial airlines to give unsold seats to patients traveling for healthcare. They will provide a maximum of 3 flights per year, with at most 1 flight per month.
Challenge: they require a ton of paperwork (of the “prove you are poor enough” variety), and need at least 21 days advance notice. I am in the process of completing this.

Lazarex Cancer Foundation
https://www.lazarex.org/
Their focus is on helping patients overcome the financial burdens involved in joining a clinical trial. Exciting that they say they even help with the other costs, like hotels and taxis to and from the appointments.
Challenge: not sure yet, still in the process of completing paperwork.


In the mean time, I have had a few wonderful people reach out to help with flights. Emily Bennett Taylor, stage IV lung cancer survivor, offered to buy me a plane ticket to Colorado. (If you have never read her story, you should. It is amazing. https://embenkickscancer.wordpress.com/) She said that a lot of people helped her during her treatments, and she wanted to pass along the kindness.

And then! The awesome person and excellent musician Zoe Keating gave me some of her miles to help with flights. Zoe and I became friends when her husband was going through treatment for stage IV lung cancer. He has since passed away. Cruel disease, this is.

I’ve met some of the most amazing people because of this horrible diagnosis. It’s the club no one wants to join, as they say.

Last Great Hope

When I was first diagnosed with metastatic lung cancer in 2013, the situation was dire. Cancer has spread extensively throughout my body. The only option offered to me for treatment was chemotherapy, a triplet of chemicals which had a 1/3 chance of reducing the cancer, and a 1/3 chance of holding it stable. The last 1/3 was left up to my imagination. Even with treatment, they expected I had about 8 months to live.

Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source.

Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so hard to tell. Then Lorlatinib which didn’t seem to do much of anything.

That brings me to where I am now: TPX. My Last Great Hope.

All of your star-wishing (and a fair bit of persistence) must have worked, because I have secured a spot in the clinical trial! That is, assuming I pass a battery of tests on February 12. And I won’t really believe it until I take the first pill.

I know that I am not completely out of options if this drug fails me, but it brings me to the end of the line for ROS1 targeted drugs. There have been great advances in immunotherapy since my diagnosis, so there are more thing to try. But I’m sure hanging a lot of hope on TPX.

So, wish me luck passing the tests to gain entry to the trial, and then hope it works!

But first - the family is headed to California to make some memories!! Cancer needs to take a back seat for a week. This is family time!

Return to Oz

I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation.

With all of this on my mind, I got up and starting figuring out how to stay alive.

Actually, that’s not true. The first thing I did was get back in bed and get under the covers. Sometimes, this is a lot to take in.

THEN I got up, and called to get a copy of my latest MRI. My oncologist is wonderfully thorough, and asked that I take a disc to my surgeon at Karmanos, in case he had any other thoughts or ideas. I collected my disc and delivered it to Karmanos.

I actually managed to wait a full 24 hours before contacting the Wizards (who I have come to know in the years since my visit to Oz, because of my work with the ROS1ders). I knew my oncologist was taking care of setting up the trial for me and I was trying to let things happen the way they are supposed to ... but then I had to email them. This is my survival, after all.

And I got Out of Office replies from both! Crap crap crap. That is probably why my oncologist hadn’t given me an update yet.

And then, a few moments later, a magical reply came from one of the Wizards. He connected me with the people who do the enrollment for the trial and gave me some warnings for where things can get tripped up.

The next morning I was on the phone with the wonderful trial coordinator, my Glinda, going through part 1 of the trial consenting. One tricky part of this trial is that they want a tumor sample. No problem for me, I thought, I just had a chunk of tumor removed from my cerebellum. So I signed the consent to give Glinda permission to collect my tumor sample and get me ready to consent into the trial.

All signs are pointing to yes! I start busying myself figuring out how to manage all the flights I will need to take (anyone used Angel Flights?) and accommodations in Colorado.

However, I keep saying to myself, I’ll believe I’m in the trial when I swallow the first pill. You may recall when I literally had the pills in my hand and was not allowed in the entrectinib trial? Clinical trials are capricious beasts.

Unfortunately, tracking down my tissue has proven to be more difficult than I expected. I told her that my surgery was done at Karmanos, but my main hospital is the University of Michigan. She contacted them, but Karmanos said that they sent my tissue off for NGS (next generation sequencing, to see if I had acquired new mutations or if it was still just ROS1. Still just ROS1, by the way). She assured me that she can still collect it, but clearly it is becoming more time consuming.

AND THEN

Tuesday night I get an email from one of the Wizards saying that all of the trial spots are taken.

%#*%~%#?!

Total panic.

I’ve had my heart set on TPX ever since the summer of 2018 when my oncologist tested my cancer cells against all the current TKIs and found them most reactive to TPX.

I belong in this trial.

I reach out to my ROS1 sistas, Janet and Lisa (who I guess become the Scarecrow and Tinman in my analogy?). I get an appropriate string of swearing when I tell the news. Then they reach out to their connections to get the behind-the-scenes scoop about the trial. Their folks reply at lightning speed encouraging me to get on the waitlist; more spots are coming.

My oncologist confirms that he feels it is safe to wait a few weeks.

So now I wait. And dream of Oz.

When I’m anxious, I knit. Let’s just say I’ve been going through a lot of yarn.

My latest is a collection of octopus toilet paper cozies. I made one, then the kiddos wanted one in each of our colors. Then they wanted hats for them. M is excited that it matched the style of hat I made for her. The two in the back still need their hats. They will be done soon, trust me.

If you are wishing on stars for me, wish that I get a spot in the TPX trial, and that my cells were correctly predicting that this will be the drug that controls my cancer.