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.



Saturday, February 16, 2019

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.