Sunday, November 04, 2018

If Brain Surgery Wasn’t Enough

The good news is that my brain surgery recovery is coming along really well. I’ve even been approved to start driving again, so Jason is taking me out for some driving practice this weekend.

However, life with metastatic lung cancer continues to keep me on my toes. I’ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments.

I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn’t know I had.

On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the following week. The main side effect is fatigue (but I’m not even over the fatigue from the surgery yet!).

I am due to begin the EAP of Lorlatinib on Tuesday or Wednesday, with all the side effects that come along with that. One of which is fatigue. Oh my!

Don’t get me wrong - I am immensely grateful to have treatment options.

I am grateful there is another targeted med for me to switch to. (And another in trials after this one.)

I am grateful that I am well enough to withstand all this treatment.

I am immensely grateful for more time with my family.

But I have to admit that this has been a lot to deal with. I know that every day I am in treatment is another day I get to live, and for that I am grateful. But some days this is almost overwhelming.

I am very grateful for the support of my community - support that I am going to have to lean on again over the next few weeks.

Thank you so much to all the folks who brought meals to my family during my recovery. It is such a comfort. I can’t help but share this particularly adorable themed meal we received. Great work, Jennie, and it tasted great, too!


In other news, November is Lung Cancer Awareness Month. The ROS1ders are raising money for more research into treatments for our rare cancer. I started this fundraiser back in 2016, for my 40th birthday - and we raised over $6,000! I am reviving it, and hoping we can hit $8,000. Here is the link to donate: https://www.supportalcf.org/ros1/ToriTomalia

Also - make sure you get out and VOTE on Tuesday. As a naturalized citizen, I take voting very seriously. So seriously, in fact, that I voted absentee and mailed in my ballot at 4 am, just before we hit the road for my surgery. I didn’t know what kind of shape I would be in on November 6, and there was no way I was going to miss voting!

Wednesday, October 10, 2018

Home Home Home

I made it home Saturday afternoon and am now slowly rebuilding my strength surrounded by my beloved family.

The surgery went well and without complications. We won’t know for sure until we get the pathology report but the surgeon said the feel of the tumor led him to believe there is still live cancer in the section he removed, rather than all necrosis. So that’s a bummer, and may mean more targeted radiation to the area left behind. But we will cross that bridge when we come to it.

This was one of the scarier hills I have tackled over my 5+ years with metastatic cancer. There is an awful calculus that patients go through, deciding what we would be willing to give up for more time on earth. What deficits will we accept for more days? What makes life worth living? What risks will we accept for the hope of another year?

The amazing Jason stayed by my side at the hospital, sleeping (or attempting to sleep) in a non-reclining chair, which frankly doesn’t seem possible at all. But I dearly appreciated his company as I transitioned out of the weird post-surgery twilight into the early steps of recovery.

Now that I’m home, I’m totally focused on recovery. The main things are regaining my steadiness, balance, and coordination. There are subtle changes that I’m noticing, like how my handwriting looks different, though I am very pleased to see that I can still knit. Overall, I’m having to learn to move at turtle pace, rather than my preferred lighting speed. An interesting perspective shift which is probably a good life lesson. As always, I’m not sure why I have to find such hard ways to learn these lessons.

I am looking forward to tapering off these steroids and the messed up sleep and puffiness they bring.


Check out my amazing post-surgery hairdo! My Mum spent a solid hour soaking out the glue that had held the sensors in place, and which had dried into gooey, itchy chunks. She is staying with us for a bit and her help has been invaluable (far beyond just getting glue out of my hair).


The support from folks has been absolutely vital and humbling. The meals, the puzzle books, the well-wishes and prayers. All of these have allowed me to focus on healing, knowing I have a community pitching in to help! If you still want to sign up, I’ve added a few more meal requests to the Lotsa Helping Hands site. We are the “Tomalia Support Team” and our zip code is 48104.

Tuesday, October 02, 2018

Batten Down the Hatches

I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4.

I’m oscillating between being incredibly nervous and remarkably calm.

Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn’t anticipate any problems.

In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I’ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be.

As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and liberating feeling.

Many heartfelt thanks to all the people who have reached out to offer help, meals, prayers, and well wishes. My friend Meriah is organizing all of this through Lotsa Helping Hands, so if you would like to join the “Tomalia Support Team” to learn about practical ways you could help, visit the website and you can learn more (our zip code is 48104).

I will happily accept any thoughts and prayers for strength to me and my family, and for my surgeon to have steady hands and a clear mind on Thursday!

Tuesday, September 18, 2018

It’s been a rough year.

For those of you dear readers who have been following my ongoing health drama, you may recall that in December 2017, a new little brain met showed up, a known weakness of my 4 year awesome medicine, Xalkori. Rather than use the fancy SRS I had the previous 3 times this happened, we decided to take the leap and join a clinical trial of a new ROS1 inhibitor designed to include the brain in its field of treatment, as it is designed to cross the BBB.

You may recall the agonizing washout period required by the trial (and of questionable value) plus the added complication that my liver values shot into the stratosphere and forced me to be off all cancer treatment for an awful 18 days.

You may recall that I happily popped those first clinical trial pills (good old RXDX-101) on December 26, 2017.

You may recall that there was a huge clusterf&@$ in March when my brain MRI was misread and I was unceremoniously ejected from the trial without a follow up plan.

And you may recall that I fought my way back onto the trial, finally getting people to listen to me and re-evaluate that MRI.

Since then there has been an ongoing debate about those pesky old brain mets.

Settle in, this is a long story.

Every 8 weeks I have a battery of tests, per the clinical trial. And every 8 weeks a panel of experts convene to mull over my puzzling MRI results. The mets don’t really appear to be growing the way tumors would, but they haven’t been shrinking either. And there is quite a bit of swelling around each, which can either be a sign of tumor growth or radiation necrosis (sort of like scar tissue caused by the SRS treatments). Each time the experts have agreed to stay the course and see what the next scan reveals.

After my July scan, my oncologist called on a trusted colleague from Karmanos, asking him to meet with me and review my brain met history and puzzling scans. We meet in August and he suggests we gather more information about what we were actually dealing with, suggesting I get a PET scan of the brain. But wait, you ask, in all these years of cancer treatment, they have always said that PET scans don’t give enough detail of the brain to determine if there is cancer since so much of the brain lights up from basic activities of living. His suggestion to use a PET scan involves a clever bit of reverse engineering: if the spots in question have LESS than normal uptake, that would give us a clue that they were in fact dead tissue (meaning the spots are radiation necrosis).

So, I had my PET scan. But they actually just did a PET of my body, not the brain.

Ha ha ha. Of course.

They did the wrong scan.

Seriously.

The good news is that the PET of my body showed no increased uptake, meaning the clinical trial drug is doing just what it is supposed to be, and is effectively inhibiting the cancer in my body.

Let’s pause and appreciate this really good news.

Now back to the scheduling fiasco. They need to do a BRAIN specific PET scan, and the first available is on September 10. I take it.

My regularly scheduled August 31st MRI raised a few more eyebrows, in part because the radiation tech put actual measurements in the report (instead of the infuriatingly vague words like “enhanced” and “increasing”). They measured the met in the cerebellum as 2.4 cm, increased from 2.0 cm in the last scan. Well, this was a surprise to me, to see some actual significant numbers. When you are talking about the brain, 2.4 cm is into territory where you might need to make some serious moves. Specifically, brain surgery.

I spend the final holiday weekend of summer trying to soak up as much relaxation time with the family as possible. And trying not to think about a growing mass in my brain and the prospect of brain surgery.

My oncologist again connects me with his most trusted surgeon at Karmanos, who asks that I deliver the most recent MRI films to him on Tuesday so that he can get a look at what we are facing. I try to keep my wits while my daughter has a meltdown at drop off on the first day of school. I calculate how long it will take to get to the U of M, get my scans on disc, and get them to Karmanos and into the surgeon’s hands.

I successfully deliver the goods. (And my daughter loves school and her new teacher by day 2.)

Meanwhile, I am scared out of my mind, knowing that there is something growing in my brain, something big enough that they feel it needs to be surgically removed. I am told that if it isn’t causing symptoms yet, it will. And let me tell you, that if people keep asking if you are having any neurological symptoms, it’s really hard not to start wondering if maybe you ARE. Is my balance off? Why am I getting a headache? What is that pressure in my sinuses? I ended up calling into the hospital Saturday night because I had a headache and didn’t know how seriously I should be taking it. (She reassured me that the pain I was describing was not the sort of neurological symptoms that would warrant rushing to the ER.)

I am scheduled to have a consult with my fancy Karmanos neurosurgeon that Monday. He confirms that I am not having the troubling neurological symptoms that would warrant immediate action. He plans to take my case to the tumor board on Wednesday, and wants to know the status of that brain PET.

If you have been following this lengthy story with a calendar at your side, you will realize that my brain PET is scheduled for the next morning. “Is it possible for you to get me that scan so that I can review it before the tumor board meets on Wednesday?” Of course it is.

So I do the PET scan bright and early Tuesday morning, wait several hours for it to burn to disc, then head to Karmanos. I walk the disc to the front desk, and plead my case, reiterating that this NEEDS to be uploaded and available for my doctor by the end of the day, so that it is ready for the tumor board meeting. They assure me it will happen.

Wednesday passes without incident.

Thursday morning I get a call from my neurosurgeon’s PA, asking why I never delivered my PET scan.

Ha ha ha ha ha ha. You can’t make this stuff up.

She eventually tracks it down (it was still sitting at the front desk), and says that the tumor board discussed my case without the PET scan, and felt that even if it is 100% necrosis, it is just too big to leave sitting around. So, brain surgery it is, first week of October.

As a side note, I did eventually get that brain PET read, and this line was music to my ears: “sites identified in the MRI do not have distinct increased metabolic activity, in fact, metabolic activity is at or below the level of cerebral white matter.” Which means there is decent reason to believe that the drug is working in my brain, too, and the remaining spots on the MRI are just necrotic tissue.

Now I am on a cocktail of dexamethasone, trental, and vitamin E to try to bring down the edema before surgery.

In addition to the mind boggling logistical nightmare of having cancer (it really is a full time job), these past few weeks surprised me in how absolutely shaken-to-the-core terrified this made me. I thought I had developed a thicker skin after five years dealing with metastatic cancer, but the prospect of brain surgery really shook me up. There is that familiar, unsettling feeling as I look around at everyone acting so normal. Don't they know the whole world is being turned upside down?

My kiddos' responses were each so completely them.


  • (Eyes filled with terror) No Mama! I don’t want you to have surgery!!!


vs.


  • (With a casual shrug) It’s okay, I know they’ll be careful.


vs.


  • (Long pensive moment, eyebrows raised) Brain surgery. (Thinking, thinking) Well, these are trained professionals, right?


Now I am going through all that I do, trying to put plans into place to make sure our little ship keeps sailing even when I check out for several days/weeks.

This is a very long post. Well done, those of you that have made it this far. It has been an enormous amount for me to process and I am only really coming to terms with it now.

Wish me luck.

Friday, July 13, 2018

Meh.

I got the results from my every-8-week scans for the clinical trial, and the overall reaction is ... meh.

Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while.



So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005!).

Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism.

-----

In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my mom with some decorating projects, playing with my baby nephew, and so many more things were absolutely perfect.
So many games!
Here's to more months, and more time where the biggest drama is on the chess board.

Tuesday, May 29, 2018

five.

So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%.

This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?

I took a stroll down memory lane to see how I wrote about this day over the past 5 years.

A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.

As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.

  1. See my kids grow up
  2. Help Jason build our dream business
  3. Cure my cancer

I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.

#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!

The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.

These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.

-----

It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....

  • 2 bronchoscopies
  • 6 cycles of a 3 chemo agents
  • 50 months of crizotinib
  • 3 sessions of SRS
  • 20 injections for bone mets
  • 1 clinical trial
  • 3 PET scans
  • 3 bone scans
  • 10 EKGs
  • 17 brain MRIs
  • 21 CT scans
  • 1,826 days (knowingly) living with lung cancer, and all the effects and side effects of cancer treatments and procedures.

But who’s counting.

-----

Five years is a significant milestone that deserved a significant gesture.

So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.

Our daughter wrote this on the family calendar.

It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.



It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”

I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.

Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....

It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”

-----

We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.

Strike dance!

Strike hug!

We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.




My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.

The 5 of us

We each ate our own head!

So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .

Monday, May 14, 2018

Good enough

Thankfully my scans were much less of a roller coaster this time around. The consensus was that the brain mets are probably stable, so I can stay on the trial drug. Not quite as nice as a glowing report, but good enough. I'll take it, and I greatly appreciate that there was no drama.

Boring is just fine, thank you very much.

As the trial doc said, let's just try to keep stringing together months at a time until we hopefully get to a year. I know that's the drill for this metastatic life; just keep kicking the can down the road, going one step at a time, and before you know it (and if you are immensely lucky) you realize 5 years is just around the corner.

So let's just keep kicking!