Can You Believe It? It's Been A Year!

I've been into celebrating all kinds of things this last year - because it brings myself and others JOY - and I love that, and I'm still on my finding JOY kick.   However,  I'm not exactly celebrating today.  Today comes with all kinds of mixed emotions, some good, some not so good.  Today is a day of reflection -  on where things were and where they are now.

EXACTLY ONE YEAR AGO

March 19, 2025 was when they first found the brain metastases on MRI - and later that night with a CT scan, the discovery of the primary lung tumor that started it all.  This included additional metastases to my bones and lymph nodes.  Then a biopsy from one of the lymph nodes in my neck to further identify my type of cancer and help define a treatment plan.  The hardest thing to come to terms with (I'm still not sure I've come to terms with it) - It is Stage IV  non-small cell lung cancer with an EGFR mutation because of an Exon 19 deletion, and it is inoperable because of it's location - too close to too many important things.

HOW FAR HAVE I COME?

I went through things I never thought I'd be able to survive with the goal of getting this disease tamped down - and maybe extending my life a bit.

My Radiation Oncology team performed radiation surgery on 17 metastasized tumors in my brain.  I can't believe how swiftly they started.  It was less than 10 days from my diagnosis and I was already receiving treatments.

During that time, I could barely put two thoughts together.  I was woozy and off balance and had a level of fatigue unlike anything I'd ever felt before.  And yet I was feeling "wired" from all of the steroids I was taking.  In this case, the steroids are used to keep the brain from swelling too much - but it still happens a bit, which is where all of my symptoms came from. 

And then there were bald patches.  I had so many of them from the radiation.  I tried an epic comb-over.  It worked for a little while.  

In mid April I started chemotherapy.   Several infusions of both carboplatin and pemetrexed.  Because patients can't tolerate carboplatin infusions terribly long, I moved to just pemetrexed every 3 weeks.

The carboplatin was really hard on me.  Even though I didn't loose all of my hair, between the patchy baldness from radiation and the extreme thinning from the carboplatin, I just decided to buzz cut it all off rather than look like Gollum from the Lord of the Rings.  The other side effects were bloody noses and ingrown toe nails.  I know that sounds weird, but imagine if most of your toe nails were ingrown at the same time.  Now, I know that's a side effect people don't think of with chemotherapy.  And I had all of the other regular yucky side effects people  think of too.

I also started taking a targeted therapy, Osimertinib (Tagrisso) , a daily pill.  I think this is a miracle drug.  This daily drug hones in on my EGFR mutated cells and kills them.  It's been around for 9 years but is still under it's patent.  It started doing it's job immediately.

WHERE AM I AT NOW?

I had an MRI last month and a CT scan last week and here's where I'm at.

Things are stable!

What does that mean? Over the last year, between the chemo and the pills doing what they do, the metastasized tumors are no longer visible on CT scan -which is great news.  There is most likely still diseased microscopic cells all over my body, but for now the Osimertinib is keeping them in check.

The main tumor is still there.  It is in my right lung.  It started out at almost 5 centimeters with many metastatic tumors through out both lungs.  Now the metasticies are no longer visible and the main tumor has shrunk down to 1.9 centimeters.  That's over 60% shrinkage - not bad!  

As for my brain, there's lots of scar tissue, but the metasticies are for the most part gone.  There are 2 spots that they are keeping an eye on.  They are not sure yet if it is new growth or just scar tissue - so we wait until my next MRI in May, and do a comparison.  If there is growth - I'll go through another round of radiation.

To summarize - things are stable.  I'd guess this could be called a "partial remission".  A full remission means that there is no longer any evidence of cancer  - but since mine is still inoperable and still in my chest, a partial remission is as good as it gets.

WHAT HAS THIS EXPERIENCE REVEALED TO ME?

Most importantly - I've learned how truly wonderful and kind everyday people are!  The outpouring of kindness has been the overwhelming and amazing part and I want everyone to know how truly grateful I am to each and every one of you.  

I get a little choked up when I think about it.

I'm so grateful for my family - both immediate and extended.  They've surrounded me with love and support.

I'm so grateful for my medical teams.  I have the utmost confidence in them.  They've identified and navigated my treatment with the utmost kindness, expertise, speed and skill.   It's been a really good experience thus far.

I'm also extremely grateful for my community of friends - and that includes the ones here in Wisconsin, but also, because I travel quite a bit and have lived many places, this community extends far and wide.  Everyone has shown me such immense care and concern.  Sometimes it's someone just checking in to say hello.  Earlier, when I was really feeling sick, people wanted to help us out where they could.  Sometimes it's simply going along with my wacky - organized "Lets find some JOY" events - like going to the Witch's Paddle in October. 

Then there are the organized surprises - I was blown away by this - completely caught off guard.  Unbeknownst to me, my local knitting group friends bought up all of my Halloween sock sets at the Wisconsin Sheep & Wool Festival - and they did their own Purl Talk Yarns sock knit along and then surprised me at the November meeting of the Madison Knitters Guild.  What an incredible group of people!  I love these pictures!

OTHER THINGS REVEALED.

The advancements in cancer therapy has been tremendous this past decade.  Recent government cuts to research funding and dealing with health insurance companies - not so much!  I have an MBA, so from a business profit standpoint, I get it that I, personally, am a bad financial decision.  But lets face it - they profited from my decades of great health.

We've been fighting and appealing, for almost a year now with our insurance company about paying for the biomarker testing that revealed that my adenocarcinoma non-small cell lung cancer  had that EGFR mutation with Exon 19 deletion.  

Biomarker testing has been around for 30+ years.  It's not new, and they still don't/won't pay for it!  My doctor wanted it.  We opted to have it done.  But insurance keeps kicking it back.  The other odd thing... the insurance company is paying for the treatment that came out of the diagnosis - and it's a crazy amount of money.

Without that test, my survival rate would have been, on average, 18 months.  So at this one year mark, I'd only have had 6 months or so to go.   Having that test done opened up treatments that I never would have had available to me - like the Osimertinib pill.  I guess we'll keep duking it out. 

Additionally, I was contacted by the state of Wisconsin advocacy coordinator from the American Lung Association.  They are working to advocate for patients at our state capitol (6 miles from my house) to require insurance companies to pay for this type of testing.  They took down my story and I may be asked to go to our capital to lobby our representatives to change the law.  I sincerely hope that I am able to do some good here.

EVEN MORE THINGS....

The other off-kilter, systemic things I've come across...the unbelievable cost of medical care when you need it, and how linking health insurance to your employer is really the exact opposite of people need. 

I saw one explanation of benefits that showed that one chemotherapy treatment cost was almost $20,000 and I've now had 15 - that's about $300,000.  Then lets talk about the Osimertinib pill I'm taking.  Each month, my insurance company pays $10,000, and my co-pay would cost over $7,000.   I'm lucky enough to have applied and qualified for Astra Zeneca's patient assistance program to cover the co-pay, but all told it's over $200,000 per year just for one drug.  Together that's $500,000 - and we have relatively good insurance because Paul works in healthcare.

So what about those that do not have as good health insurance? and you don't really know until you need it - and how does the average person know how to navigate the system?  If I didn't have Paul to help figure this stuff out, would my outcome be as good?  I don't think so.  I'm grateful for him every day!

On this journey, I've met so many people, many further along in their treatments, who are faring much worse.  These people are really sick.  And you know what? - I've met many who are so very sick and at the same time are struggling to work.  They are worried about loosing their job -and are trying to maintain their health insurance - instead of just trying to heal.  Its so counter intuitive.  But we have a "for profit" medical model  that is linked to employment and is built on being a "healthy" person. 

When you are really sick and need healthcare, you also have to worry about not getting let go from your job.  There are some laws that have been put in place, like family medical leave act, but from what I see - I question the morality of this for profit model.  

Paul is 61 this year - retirement should be in sight.  But for now - there's no plans to retire.   While I currently can't be denied insurance for a "pre-existing condition" like cancer, if I switch insurance, they can make me pay through the nose for it.  It's kind of shitty that Paul & I can't make the best of the time we have left together.

UPDATE FREQUENCY

I've been through a lot this last year and because things are now stable, that means I'm back to work in the studio.  That doesn't leave a lot of time for blogging and there really aren't too many new developments - which is good news in my world.  So, I won't be updating this blog with any regularity - until there is something to tell.

In the meantime, I'm just getting on with as normal a life as I can have - still trying to squeeze in JOY whenever I can.

For now, there's yarn to dye, sweaters to knit, shows to go to, fun to be had, family and friends to spend time with.   I'm going to try to soak it all up wherever I can!

I love you all.  Thank you for all of your love and support!

-Laura