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!