Thursday, November 07, 2019

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.

Sunday, August 04, 2019

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.







Wednesday, May 29, 2019

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.”

Friday, May 17, 2019

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.


Tuesday, April 09, 2019

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!

Saturday, April 06, 2019

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.


Wednesday, February 27, 2019

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.