#sciencesunday – The question of “why”

“Why did you get cancer?” the six-year old asks me.

I am two glasses into my sake cocktail at a Japanese restaurant where I’m meeting several distant relatives for the first time. I say the most comforting thing I can think of of all my theories that I had been mulling over obsessively for going on five years.

“My dad’s side of the family had it. His mom had breast cancer. It was genetic.” That is not a statement of fact, but it is one of the three potential theories I settled down on after obsessively going over everything I’ve ever ate, breathed, drank and been exposed to (like cell phones, plastic, deodorant and the second-hand smoke of the guy I casually dated when I was 22). Door number 2 – that this was sporadic bad luck – would provide little comfort considering the parents of the little girl are my age. If sporadic cancer can happen to me, it could happen to her young parents too. Door number 3 is “I inherited from relatives you’re related to.” Door number 4 is “I don’t fucking know.” It’s the most honest but considering adults have issues with ambiguity, could we really expect a kid to get it? And I’m still trying to figure out exactly what my degrees of separation are to these lovely people.

We are at a weird intersection where we have the means to find lots of stuff out but we’re not sure what to do with the information. There are plenty of good things about ancestry testing kits, like the potential to find long-lost family and serial killers that terrorized communities. But the tests are far from 100% consistent and accurate. Which can lead to identity crises and wondering if your sainted grandmother actually cheated on Grandpa and had another man’s child.

Now, hereditary cancer tests. I’m all for testing for BRCA because there’s actually things that could be done to reduce risk like a preventative masectomy or oopherectomy. It might cause women to feel pressure to have kids earlier but I tell you, if I had known cancer was in my near future, I would married Younes and tried to have kids a lot faster, “minimum time of dating” standards be dammned. Also the risk of male breast cancer, prostate cancer and Pancreatic cancer isn’t really addressed but at least those at risk know which signs to look for.

So in Spring 2016, I had large-panel genetic testing that tested for, like 79 mutations. I was negative for 77. I tested Variant of Unknown Significance for two. One mutation was also linked to colon cancer, which a great-grandmother died from. This knowledge has also caused me distress in situations such as when my aunt developed precancerous polyps and a college classmate died of colon cancer at the young age of 31.

And then, less than two years after I had that test done, the newspapers announced that 72 other potential inherited cancer mutations had been discovered. I still have not recontacted my genetic counselor because it’s beginning to feel like whack-a-mole. One question gets answered and another pops up.

And that doesn’t even get into the testing on non-inherited mutations, ie mutations that exist in the tumor(s) themselves.

Eventually, I probably will pursue further testing because ultimately I’d rather have the information and not know what to do with me than not have the information at all. And I am really grateful for reconnecting with my mom’s dad’ side of the family. But I do caution those who are looking to do at-home genetic testing, whether is ancestry . Com or Color Genomics – understand what you are getting into. Educate yourself or in some cases, see a genetic counselor. Knowledge causes consequences. It can be good, it can be back, but there are consequences.

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#sciencesunday – The question of “why”

#traveltuesday – How Moroccans vacation

Two of the sites in Morocco that we stopped at last time – Ouzoud Waterfall and Bin el Ouidane reservoir had a certain charm that other places we had visited did not. It took me awhile to figure out, but although there were plenty of international tourists at each place, there were just as many, or more Moroccan tourists out for the day.

We were only at Ouzoud Waterfall briefly this trip, being that all of us had only caught a few hours of sleep in the rental car the previous night and we were exhausted and not alert enough to explore the many hiking around the falls. But I remember having a romantic night there with Younes back during our 2015 trip. We feasted on at a food stand in the village before walking down to the falls. There, we got a simple room for the night and walked down to the many boats where we sat on one and drank Moroccan wine clandestinely as we watched some brave souls explore the caves behind the falls by flashlight.

The next morning, we took breakfast and tea on a balcony overlooking the falls. I proceeded to get into on of the pools and cool off. After a refreshing swim, I slipped a lightweight on over my suit and we walked back up towards the town. At one of the last cafes before we hit the village, Younes was invited to join a jam session of local musicians and I took video of him and amused myself by watching adorable children chase cats.

This trip, we spent an afternoon and evening at Bin el Ouidane. Seeing that bright blue reservoir as we drew near was pretty incredible. As Matt said “it looks like a mini Lake Tahoe.”

The shore was crowded with refurbished boats and jet skis. Some were very comfortable, some were bare bones, but I appreciated the resourcefulness of these Captains. I saw boats with an umbrella or two duct-taped to a corner to provide shade from the sun and a rowboat where the oars were shovels. I noticed few international tourists and it seemed like most of the clientele were middle-class Moroccans on a day trip with the family – I assume the international tourists are more likely to come for carp fishing and rafting expeditions. Younes got us a boat and our guide took us through a narrow section of the reservoir where we could see caves formed out of the surrounding stone. Younes and Matt then rented a jet ski and took off around the lake.

Our guide offered us a decently priced apartment for the night and after a hearty tagine dinner while watching the silvery moon over the reservoir, we tucked in for the night – for me, the first full night’s sleep I had gotten since I left the US. It was delightful.

#traveltuesday – How Moroccans vacation

#metsmonday – How good news REALLY feels like

So yesterday I wrote about my good news in that my clinical trial is shrinking my mets quite dramatically. You’d think that would be really exciting news, right? It was – for the first few days.

Then my mind went to the mixture of sucky and ambiguous news that I’ve been receiving for the past few years. I had been in so much limbo as to “are things moving in the right or wrong direction?” that now that I have evidence that things ARE moving in the right direction, I’m still having a hard time getting out of my old mindset.

And there’s the simple fact that with metastatic disease, things move in the right direction until they don’t. How many times have I heard of fellow metathrivers finally reaching the long-anticipated status of No Evidence of Active Disease (NEAD) only to have serious progression (or be dead) within 3-6 months?

Then there’s also the issue that I know too much. I had genomic testing done years ago and I know I have a number of mutations that can make my disease less responsive to the treatment we already have, but researchers haven’t puzzled out what that means. And I’ve been all over the country and even beyond (i.e. ABC Lisbon 2017) asking the world’s top scientists and researchers “what does this report mean? What do these mutations mean?” Since there’s so much we still don’t know about what makes my cancer act the way it does, how can I really believe that this particular drug is the thing that will get me NEAD for years?

And since this mess began, the fall has hurt less when I’ve been braced for it. My Stage IIIc diagnosis at the end of 2014 knocked the wind out of me. I didn’t expect the lump to be cancer in the first place and for it to be cancer AND advanced as it was shook me so much. As someone who spent 2+ years as a health educator in an underserved part of the world, the diagnosis didn’t just change my whole life but hit my in the gut as a moral failing. How could I have let this happen?

In the 18 months I was going through treatment after my initial diagnosis, I cried lots, blamed myself, moved past blaming myself (mostly), read about metastatic disease, panicked about metastatic disease, went through periods of denial about metastatic disease and eventually made peace with the likelihood that I would someday have metastatic disease myself. So when it did come for me, the fall hurt less. It still hurt,
I still went through a period of denial, but I took it better than the initial diagnosis.

I guess I’m in that place right now – cautiously happy but not TOO hopeful because I know how quickly things can change. My analogy about falling off the cliff makes me remember something Beth Caldwell wrote. I wouldn’t say I’m still hanging out at the base of the cliff but I’m not at the top either.

This also makes me remember when I was in Peace Corps and I traveled to Cape Town with my cousin Jesse. We climbed up Table Mountain and he wanted to motor up to the top. But it was too much climbing all at once for me and I had to stop and rest. I remember at one point I insisted we stop so I could drink some water and enjoy the view. So we did. And that’s where I am right now, partly up Table Mountain, not wanting to climb back down and too cynical to think about climbing further up. It’s not comfortable, I didn’t have time to grab a tent or sleeping bags and the ground is hard and sticks are poking me in the back. But I have a great view and enough water and snacks to get me through for awhile so I will make the best of it because I don’t have any other choice.

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Hanging out halfway up Table Mountain

#metsmonday – How good news REALLY feels like

#sciencesunday – Helping science along

One of the big debates among those who treat cancer metastasis to the brain is what drugs can cross the tight blood-brain barrier and penetrate the brain enough to kill tumors. It has been widely accepted that chemo and targeted therapy made of small molecules can cross into the brain, but those made of large molecules can’t.

Since I had a craniotomy 2.5 years ago to remove two 3cm tumors from the right side of my brain, I have dealt with persistent regrowth in the tumor bed. The tumor bed was radiated and I was put on two small-molecule drugs. The tumor bed was stable for awhile and then small changes started to be seen on my MRIs. The radiologists/oncologists didn’t know if we were looking at tumor progression, radiation necrosis or blood byproducts. So we watched and waited.

Over the fall and winter, I had been on a large-molecule chemo/targeted therapy combo that had kept my small liver mets stable but not regressing. At the end of January, a liver lesion grew 5mm. That often isn’t enough growth to switch treatment, but since I was interested in clinical trials and the current treatment wasn’t shrinking anything, we decided to change right then. I started exploring a clinical trial of an Anti-Body Drug Conjugate that was only in Phase 1 studies but had been performing well so far.

Among my list of tests I had to get done before beginning this trial was a brain MRI since the trial would only accept me if I had stable brain mets. The MRI was performed, there was some miscommunication, I was told that it was stable, I was enrolled into the trial based on the assumption that it was stable, however it was very much NOT stable. I found out later that the most persistent tumor had regrown to 6cm at the longest point (from what I could decipher from reports, it was a long, skinny tumor snaking along the side of my brain). Then, the second tumor bed regrowth had grown to almost it’s original size of 3cm.

Thankfully, this growth was somehow missed and I started the trial anyway. After about four months on the trial, I finally had a follow-up brain MRI. The results were phenomenal. The biggest, stubbornest tumor was less than 3cm and the second residual tumor had shrunk down to 4mm.

So based on my results, my oncologist is actually talking about trying to open up an arm of this trial specifically for people with brain mets. As those with brain mets are often excluded from trials, this could be a breakthrough. Also, the linked drug in this ADC is a topoisomerase inhibitor and topotecan, another topoisomerase inhibitor has had some success treating lepto mets, which is a devastating but growing problem. Us with brain mets need the breakthroughs that may come of this.

Science is cool. And I love being part of it.

#sciencesunday – Helping science along

#tbt – My first time meeting the in-laws

Since my last blog was about how much I adore my in-laws, I thought it was only fitting to do a #tbt about the first time I met them.

January 2012. Younes and I had known each other for several months and had just had a fantastic time before Christmas. After I spent some time traveling by myself and meeting family around the holidays, I flew back to Morocco to meet my new boyfriend’s family and see his hometown.

Younes met me at the Fez airport and we spent the day exploring Fez – seeing the factory where the leather is dyed, shopping, eating. In the evening, we took a night bus to his hometown of Midelt, where we were greeted by his mother before we went to bed.

Vats of leather dye in Fez

The next morning, I met Younes’ father and middle sister. No one spoke English and my attention was drawn away by a shy, little face. Rania, only five at the time, had a ballon. I took the ballon and batted it towards her. She batted it back. We were instant friends. And even while I met the other nieces and nephews, I continued to have a soft spot for shy, sweet Rania. We formed a bond that continues to this day.

Rania and I, 2012 and 2015

Of course, not all the nieces and nephews existed back then. Emron was on his way but not born until two months later. And Adnan and my littlest niece were not even a thought yet. But I will always remember feeling that between her shyness and my fumbling-through-a-new-culture awkwardness, Rania and I understood each other.

Younes’ first picture with Emron two months after I went back to the US in 2012

I had spent enough time in Morocco by then that I understood that much of the Moroccan hospitality revolved around food. So I eagerly drank the endless glasses of mint tea and ate the tagine and couscous. There were only a few times
I got so full that the women of the family had to yell, “Amanda! EAT! EAT!” I even let Younes take me to a small rambleshack cafe where I tasted Bessara for the first time. I remember finding the smell pungent and overwhelming but the soup was quite hearty on a winter day. Over time, it became a favorite.

Family flowed in and out of the doors. I got to meet Younes’ brother, as well as many aunts and uncles. I also got to meet Younes’ younger sister and niece Hajar. Two-year old Hajar was adorable but I could tell she was an attention hog. I hugged Rania tighter.

Younes cuddling his nieces, 2012

Younes and I took a road trip to explore other parts of Morocco. On the way back to Midelt, we stopped to meet his oldest sister and her, at that point, two boys. I remember making a mental note that Younes’ eldest nephew was only a year younger than mine.

And Younes’ dad. Although we did not share a common language, I could tell how much he enjoyed having long conservations with his children. I could tell how much he loved his granddaughters as he would often fall asleep with one of the snuggled up next to him. And the as the cold January mountain wind drifted into the uninsulated rooms of the house, the family gathered by a small space heater to stay warm. If I would walk into the room, Younes’ dad would slide over and make room for me, giving me the highest blast of heat.

As we left, I was so overwhelmed by his family’s hospitality, I thought “I really hope we don’t break up because I want to see them again!”

#tbt – My first time meeting the in-laws

#traveltuesday – My heart overflows when I see them…

To be honest, my first few days in Morocco this time around were not the best. Yes, we saw beautiful country and some new sites, but it had been three years and I was eager to see the in-laws.

We arrive at Younes’ eldest sister’s house and the two middle boys (of four) come running out. 6-year old Emron leaps into my arms and as soon as I put him down, 13-year old Amine is waiting for his hug. Into the house we go where I stare in amazement at the oldest and youngest boys. 17-year old Maroune had always been tall, but now he looks like a pro basketball player. And 3-year old Adnan had only been 3 months old the last time I saw him.

The oldest boys speak impeccable English while the youngest boys have a fairly decent vocabulary themselves. I throw myself on the ground and start playing blocks with Emron and Adnan. They are both too adorable for words. Younes’ sister asks if we would like couscous or something else for dinner. It’s a Friday night in Morocco so couscous of course! She shooes me into the sitting room for a pre-dinner snack – mint tea and coffee cake. After snacking, I wander into the kitchen to see if I can help. I’m given half an onion to chop. Gulp. Younes is the chopper in the family, the one who can do magic with the chef’s knife. Even when I cook for him, I will often still ask him to chop the veggies and herbs. My clumsy left hand, injured by the multiple cancer surgeries, is just too unsteady. I do my best, but my sister-in-law has chopped the entire half of her onion into the pot while I’ve barely made a few cuts. Not wanting her to think that I’m letting her brother be without home-cooked meals, I tell her sons to tell her that I might not be a good chopper, but I am a pretty good cook. Then I make myself useful doing the teatime dishes as little boys run and shriek in the background.

The little boys

We pack up and go to eat dinner, picnic-style outside to escape the oppressive desert heat. We scoop up spoonfuls of delicious couscous and dig into slices of melon for dessert. Matt kicks a soccer ball around with Amine, Emron and Adnan. I relish the cool breeze and take it all in.

The next morning, we must get right on the road. In Moroccan time, that means “we’ll get on the road within 5 hours.” I bring out some presents – new school folders, toys for the little ones. Eventually, we exchange the last hugs and we are on the way to my mother-in-law’s house.

Younes and I with all five nephews

Being that we were in Morocco, we have a number of stops to make to visit with aunts, uncles and cousins, all bringing us mint tea and snacks. Finally, we make it to Younes’ childhood house, a place that also feels like home to me, where I hug my mother-in-law. I go down to get presents for the nieces and I hear excited shrieks in the background. 11-year old Raina and 8-year old Hajar run to me and I wrap them in a big bear hug. Being 3 years older has not made them any less cuddly and as they work on arts and crafts from the gifts I gave them, they break off for lots of hugs, kisses and snuggles.

Cuddle and craft time with nieces

My night gets even better when the one niece I have never met, the 3-year old daughter of Younes’ brother, comes over. She initially cries when she sees me and hides her face in her mom’s shoulder. But within the hour, she warms up to me and when she warms up, she really warms up. All of the sudden, she’s jumping on me, grabbing my hand and wanting me to chase her. And the girls are THRILLED to see Matt again.

Pandemonium. Little girl pandemonium. The delighted screams of my nieces almost cover up a profound absence. Almost.

There is an empty space in the sitting room where my father-in-law would lie and watch his grandchildren. Where he would have long conversations with his children. When he died in February, I was trapped in a cycle of clinical trial screening and brain radiation and unable to be there to mourn with the family. Now, I want to acknowledge the empty space without bringing up too much sadness but I’m not sure how. So I make do with Google Translate and simple English phrases and lots of hugs.

Eventually, the girls settle down. I end the night drifting peacefully to sleep with a niece snuggled at my side.

#traveltuesday – My heart overflows when I see them…