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.


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!!!


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


  • (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.


Unknown said...

You are amazing! Sending you all the love and positive vibes!

Unknown said...

Your kids' responses are so perfect, and in combination, they are absolutely the most reasonable reaction anyone could have to this situation. Thank you for documenting all of this. Your portrayal of the inanity of dealing with the lack of technological integration in healthcare is spot-on--the frustration, the true-to-life-ness, and a perfect example of how the fragmented system we have in the US has very real, potentially very awful consequences on people's lives, although it sounds like in this case you were able to salvage a solution, and maintain your sense of humor about the ridiculousness of the elusive upload. Keep going, mama! We are all rooting for you!!!!

Anonymous said...

Following this, appreciate the thoroughness of your writing, and wishing you the very best.

Lisa Moran said...

And it's this difficult being an educated patient and your own advocate. Good luck in days to come. I survived two non-cancer related brain surgeries, one under emergency circumstances. I'm sure you're in good hands and the trained professionals have this.

Unknown said...

With you. You are a fellow traveler. Hoping your journey gets easier to navigate and that there are sunrises to follow.

Unknown said...

Sending you love and strength.

longbow said...

Good luck.

If I ever got to testify before any government committee about healthcare I'd start with "Have you ever had to get a disc of scans made and be *sure* it was delivered to the right people? and then had to do it again with a different set of people not 6 weeks later? each time it being a matter of life and death"

FacingLungCancer said...

Wow, Toni. I don't even know what to say except wow! What horrors you have endured. How i hope they are going to learn that it is "nothing more" than necrotic tissue.

Unknown said...

Oh my god.
I am so sorry that even in 2018 we have to be our own best health advocates. If only the care could be provided efficiently and continually, not to mention without the stress of medical bills that are mounting.
Perspective that is gained from facing our own mortality can be an emotional roller coaster, from feeling very small and insignificant to empowered and driven to fight against our odds.
I hope that you continue to fight with every ounce of your being, surrounded by the love and support of your family, and in the hands of health care professionals that are better than what you’re currently experiencing.
It’s these little things that make such a significant difference in the quality of care that a patient receives.
Kindest of regards and the best of luck to you and yours!

SharLar said...

Wowza. It sure has been a rough year for you. Sending lots of good juju your way for a successful surgery!

Linda Rogers said...

I feel so sad for you that all these mistakes keep happening. You have so much going on & the last thing you need in this cancer fight is people in the health field dropping the ball for you. You continue to blow my mind with your strength, courage & your unending determination. I will be continuing to pray for you; especially that the surgery will go great. God Bless you & your family.
Linda Rogers aka Twincess Diaries

dearmaizie said...

Sometimes after reading read your posts I just sit there for a few minutes, in amazement at all you have endured. Good thoughts for surgery.

matt said...

Good luck!

Unknown said...

Power to you, sister.

Unknown said...

I read every word and walked through it with you. I’m so sorry you have had to deal with all of that. I’ll be praying and sending positive vibes and can’t wait to hear that it was a successful surgery!