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.

six.

“In five hundred twenty five thousand six hundred minutes.
How do you measure a year in a life?”
- RENT

I made it another year with metastatic lung cancer.

The past 365 days have encompassed....

A Phase II clinical trial
Brain surgery
Brain radiation
Brain swelling
Months of steroids
An Expanded Access clinical trial
A Phase I/II clinical trial
Bone radiation
Countless MRIs, bones scans, PET scans, EKGs, echocardiograms, and blood tests.


It was a tough year.


The past 365 days have also encompassed...

A road trip to Minnesota
Celebrating my parent’s 50th wedding anniversary
Seeing my eldest enter his final year of elementary school
A family visit to the Holiday House
A dreamy family vacation to California
My 13th wedding anniversary
Girl Scout camp with my daughters
A fancy trip to New York
Countless family dinners, holidays, scraped knees, homework sheets, movies, and school pick ups.


Strolling through my notes from the past year left me marveling at the juxtaposition of the monumental with the mundane. Surgery appointments and swimming lessons, PET scans and play dates, bone rads and birthday parties.

Raising young kiddos while living with metastatic cancer - while incredibly difficult - is also what keeps me grounded in regular life when it feels like everything is spiraling out of control. Regardless of how I’m feeling physically or my fear-addled mental state, they still need dinner, and rides to activities, and baths, and snuggles, and help sounding out words, and have questions about how everything works, and need help finding their lost shoe, and and and.

So kiddos, when you are reading this one day, know how much your regular day-to-day stuff meant to me, and how it kept me sane (while sometimes driving me crazy). You made the ordinary extraordinary, and kept me going when it all felt like too much.

“The longer I can put up with this, the longer I get to stay with Jason and the kids.”

“This is the life I’m trying so hard to stick around for.”

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.

Enough

We returned from our marvelous vacation last night, the first time the five of us have taken a vacation together (please, please don’t say it will be the last).

My high point of the trip was visiting the beach where Jason and I got married, and introducing our children to the ocean.

I wanted to catch that moment and hold onto it forever.

If I stayed here all day, all week, all month, would it be enough?

When I was diagnosed, I hoped I would live long enough to see my son start kindergarten.

If only I could stay alive long enough....

Then I hoped to live to see my girls enter kindergarten.

Stay alive long enough....

Now I hope to see my son into middle school.

But I’ve realized it will never be enough.

Even if I make it another 11 years so they all become adults, I will still want more.

Being so very aware of mortality is painful and poignant and achingly nostalgic. There will never be enough of this life.

So I cling to the sunshine and memories from our glorious week and let those carry me into my terrifyingly hopeful week of testing and (if all goes well) experimental cancer treatments. Almost overwhelming, but fortune favors the bold, as they say.

I have a few good luck charms from our vacation traveling with me.

And then, these showed up on my porch this morning, from my dear friend Lily. Ruby slippers for my trip to Oz.

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.