#floridafriday – You and me goin’ fishing in the Everglades…

Ahhhh, my first #floridafriday for awhile. And what better to kick the series back off than a fishing trip to the Everglades?

My family on my mom’s side has a history of fishing in the Ten Thousand Islands. This goes back to the 1960s, when my mom’s dad’s cousin, Lucy Brinkman (who the rest of us would follow to Florida) came down with her husband Magnus, to Naples.

Lucy, who died last year at the age of 99, was an avid outdoorswoman. In Wisconsin, she would join the men for hunting trips. And in Florida, she loved fishing. Magnus did not love fishing, so she found a guide on her own. I never met C.B. (name shortened to protect the not-so-innocent), but he was the stuff legendary Everglades fishing guides are made of. In the 60s and 70s, drug trade in the Everglades was thriving, and boat captains could make a little on the side by picking up packages dropped in the water and not asking questions. C.B. did get caught and spent some time in clinker, but he provided some great trips both before and after his little prison stint. After my grandfather moved to Naples, he became Cousin Lucy’s fishing buddy. My mom and aunt would join them for trips when they were down in Florida for the holidays. Lucy was a big hit with the guides because she was a gourmet cook (who says tomboys can’t pull their weight with domestic duties?!) and would make outstanding sandwiches and treats to bring on the boat for the captains. Plus, she would pack along plenty of beer.

When I got to college, I was coming down to Florida regularly and became curious in these fishing trips. My mom found a different fishing guide, C.O. who was a distant relative of C.B.s. Her, my aunt and myself went out with him and I loved it the first time. I caught a decent number of fish despite having no experience, and the setting could not be more tranquil and beautiful. We went every Florida visit until I left for Swaziland.

Yesterday, we recreated the experience yet again with myself, Mom, Younes, nephew Matt and yet another guide. H.B. is related to both C.B. and C.O. and provided us with yet another great day.

We left the dock at about 8:20 and powered far into the Ten Thousand Islands. In the morning chill, we tried our luck at our first spot and had no luck. We moved to a trout hole. Ka-boom. The first catch was Younes’ and funnily, he almost missed it. He cast his line and left it sitting propped in the boat and he wandered around taking video and pictures. I noticed something pulling his line. “YOUNES GET BACK HERE RIGHT NOW AND GET YOUR FISH,” I screamed. He ran back and pulled in a big, beautiful trout. Next, Matt, started catching trout after trout. It seemed he would cast his line and immediately come up with something. Younes got a few more trout too. Mom and I were having zero luck. She kept getting catfish (freshwater catfish is what’s good to eat; saltwater catfish is not) and I kept getting bites that would steal my bait and get away before I could reel them in (and at one point I think a bull shark got my fish, I brought my line in and it was cut clear through by some very sharp teeth.) We consoled ourselves that we were still earning our dinner more than my dad and brother, who were at home. They both maintain that there is no reason to catch fish when you could go to the store and buy them. Then Mom finally got three trout. Would I be the only one to get nothing? Finally, another pull on my line. I reeled as fast as I could with my damaged left arm (thx cancer surgeries!) and worried aloud “Will this get away too?” “Don’t think about that, just bring it in!” Mom said. And I did. A perfectly good trout, finally. And just in time – we were at our bag limit of 16 per 4 people.

With all us us having at least one catch, we unpacked lunch and ate. I’m not sure the sandwiches I made were up to Lucy Brinkman standards, but everyone seemed to like them. We moved to a fishing hole where we could get some different fish – redfish, maybe even snapper. I got a bite immediately and thought my luck might be changing, but alas, it was a danged catfish. We caught nothing but catfish so we moved on – and only got more catfish, with the exception on the tiny snapper and blue crab Younes got (both of which we threw back.) By 2:30, I was sweaty, tired and over it. Thankfully it was time to head back. I finally cracked one of the cold beers we had packed and it tasted SO GOOD. H.B. declined the beer we packed for him (our routine with C.O. was he would only partake in half a beer on the way back to the dock and C.B.declined no beers, ever). We were back by 3, and H.B. filleted 13/16 of our trouts, leaving Younes 3 whole trouts to cook that night.

We returned sun soaked and happy. I snarked to my brother, “Your child just caught your dinner, what did you do today?” He shot back: “Worked from home to pay for the roof over his head.” CHECKMATE DUDE. Younes roasted the whole trout and we had a very excellent dinner indeed, to cap off a very excellent day.

Grandpa Rothe and Cousin Lucy

From my college days

From yesterday

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#tbt – A very German Christmas

Remember back when I met Younes in Europe to travel back in 2011 and proceeded to fall in love with him? Well, the story of my German Christmas takes off from where I left off in Warsaw.

I stumbled from the train dazed and exhausted. It was December 22nd and I had two days in Warsaw before meeting my aunt, uncle and cousin in Germany for Christmas.

The bus to the hostel was easy to find and the trip uneventful. The walk up 86 stairs to the hostel itself while carrying all my luggage was…invigorating. Being the dead of winter, I had most of the dorm to myself, although I noticed on the list of house rules, there was a specific section about fees for vomit cleanup, so it must be a pretty rockin’ place in the summer. But it was quiet that day. I collapsed onto a lower bunk and napped.

When I woke up, I had a little over 24 hours to explore. That evening, I wandered the streets to the Old Town, which I wrote about recently. The next day, I took a tram to the Warsaw Uprising Museum. It was masterfully done and very affecting and I lost track of time. When I went back to the hostel and grabbed my luggage, I was running a bit tight on time for my train to Berlin but I wasn’t too far off. Then I realized that I had messed up on the bus schedule and the bus I had planned to take wasn’t the right one after all. I’d have to take a cab. But wait! I had no more Polish Zolty. I booked it down the street with my luggage and found an ATM. Someone was at it. Like a scene in a movie, I watched as the girl at the ATM slooooooowly withdrew her cash and then proceeded to rummage through her bag and pick out every little piece of lint and throw it in the wastebasket next to her. She finally left and I got my cash and got a cab. I made it to the train station with minutes to spare. But I couldn’t find a train to Berlin! I started to imagine Christmas alone in Warsaw. I racked my brains…what final destination would include a stop in Berlin? Amsterdam? Of course! It’s practically a straight line across Europe! I sprinted to the train, got on, and the doors closed maybe 30 seconds after. Closest call I had had all trip. I found an empty row and slept until I got to Berlin, where I changed trains to Munich. Then more sleep. Zzzz.

I rode into Munich on a cool, cloudy Christmas Eve. After checking into the hostel, I hopped online so I could get in touch with my Aunt Nancy. We agreed to meet…where else? The Christmas Market.

There were hugs galore at the Christmas Market as I greeted Aunt Nancy, Uncle Chris and Cousin Kurt.

We sipped hot cocoa and wandered for a bit and then decided to go to their hotel, where there was a steakhouse. YUM. Christmas Eve steak for dinner.

The next day we met up and headed for Christmas lunch at the famous Hofbrauhaus. We feasted on Wiener schnitzel but the real highlight was the Dunkelbier. Prost!

A drive later, we arrived in by Heidelberg. Chris, Nancy and Kurt had Marriott points so they stayed there while I stayed at a quaint (and cheap) little hotel outside of the city. I don’t remember the name but it had a great continental breakfast. (I did wonder briefly if people felt sorry for me, staying at a hotel alone, while not knowing that I was actually having one of my best Christmas’ ever.) Anyway, not much time to dwell on that. Decades ago, my grandfather on my dad’s side had made contact with our distant cousins in Germany (we are many levels removed, having descended from the same line in the 1800s before my direct ancestors – Konrad Wilhem more specifically – split off and left Germany for the US). I had traveled to meet these relatives twice in the past and these are connections I cherish.

The next two days brought about meeting with small groups of family to visit our ancestor’s old stomping grounds in Offenbach…

…and larger gathering with many relatives.

Even if it was sans tree, it was truly a Christmas to remember.

#sciencesunday – Drug resistance

First off, I’d like to put in a disclaimer that I’m not a scientist, I just sometimes play one on the internet. So if any actual scientists (Uncle Chris? Aunt Nancy? Dr. Kelly?) would like to weigh in, I’d love that.

I have a type of cancer known as Her2+. It means that my cancer overexpresses a protein called Her2. Her2+ Cancer is a double-edged sword. It’s very aggressive but also has provided a great target for some of the most successful Oncology drugs (with Herceptin leading the pack) of the past 20 years.

But as successful as these Her2 targeted therapies have been, there are still some mechanisms of resistance. As someone who has Her2+ treatment resistance, I was really interested in the session about it at the Advanced Breast Cancer Conference in Lisbon. And it turned out to be my favorite session of the conference – so much information.

So what drives Her2 resistance?

As you see, there’s intrinsic resistance. A lot of Her2+ patients are given what is called neoadjuvant chemotherapy. That means chemo is given to shrink the cancer before surgery is performed. A regime of chemo and Her2 targeted drugs are given and then surgery is performed. How much the tumor and/or involved lymph nodes shrank is a pretty good indication of how well treatment worked. Best case scenario, no cancer is found at the time of surgery and worst case scenario, the cancer grew. Most people fall somewhere in the middle (I did, with most of my cancer gone with chemo but not all of it). How well the tumor and lymph nodes responded to chemo is an indication – although not a guarantee – of how well the treatment cleaned up floating cancer cells in the rest of the body. And a lack of response can be associated with intrinsic resistance.

Acquired resistance happens as tumors grow and spread. They acquire mutations that make the cancer more resistant to treatment. That is why metastatic cancer is so hard to treat – it is constantly evolving, developing new mutations and finding ways around the current treatment.

Let’s look at this graphic of common mutations in metastatic Her2+ cancer. See the blue (TP53) and orange (pik3ca) slices of the pie? They are the two most common mutation in Her2 cancer and per my a Foundation One report, I have both, lucky me. (Which is why I don’t understand the part where they can’t be mutually exclusive, guess I wasn’t paying close enough attention during that part).

Here’s the fun part. Someone can have a mutation in one tumor and not have it in a different tumor. In fact there can be different mutations in different slices of the same tumor. So while targeting specific mutations is a good strategy, there’s still lots of obstacles to overcome there.

Another problem is treating Her2+ cancer like a single entity. Her2 cancer may contain receptors for hormone positivity or may not. Her2 can be expressed at different levels or in different ways. The invention of Herceptin was a brilliant step and has saved or prolonged countless lives. But we are still light years from fully understanding the disease.

Look at these charts. Researchers have identified four molecular subtypes of breast cancer – Luminal A, Luminal B, Her2-enriched and basal-like. I had been under the impression that:

• Luminal A included only hormone positive/Her2 negative and less aggressive cancers
• Luminal B included more aggressive hormone positive/Her2 negative and some Her2 positive/hormone positive
• Her2-enriched included Her2 positive who were both hormone positive and hormone negative
• Basal-like included Triple Negative (those with no positive receptors

I am Her2 positive and also hormone positive, so I assumed that I would fall into either the Luminal B or Her2 enriched group. As it turned out, a large number of Her2 and hormone positive patients are Luminal A and there’s a pretty even split between Luminal A, Luminal B and Her2 enriched. In comparison, a great majority of Her2 positive and hormone negative fall into the Her2 enriched category. From what I’ve read, the Her2 positive and hormone negative group tends to have a better overall response to treatment and have a better chance of being the small percentage of potentially curable MBC patients than Her2 positive/hormone positive. Their tumors having a more consistent makeup might account for that.

This is getting long and we haven’t even gotten into the last variable – that Her2 likes to go to the brain and limited treatment can bypass the blood brain barrier. But I think that will be a second post. Bottom line, Her2 positive cancer is one of the most treatable subtypes and much progress has been made and is continuing to be made. But there’s still many mysteries to unlock as we go forward.

#freedayfriday – World AIDS Day

It is World AIDS Day and I am thinking about the similarities between the AIDS movement of the 80s and 90s and the MBC movement of today. There are so many similarities that the grassroots MBC advocacy group METUP was founded based upon the principles and ideology of ACT UP (including the phrase “silence-death.”)

I’ve recently been re-reading And The Band Played On, which I read for the first time in 2009. Back then, I read it because I was going to Swaziland to do HIV prevention, but now I am reading it because I want to learn lessons about advocacy. There are striking similarities, some of which are explored in the blog of our recently deceased Beth Caldwell. One haunting similarity which stood out to me was how the Reagan-era budget cuts impacted scientific and biomedical research. This is scary to think about in light of the cuts our current *wonderful* president proposed making. Thankfully, from our visit in DC, it seems that Congressional representatives from both sides of the aisle are against cuts to research. And we should remember that scientific funding fell under the Obama administration. (And while that was due a lot to partisan bickering, look at the emphasis in the linked charts that Obama put on energy vs health research. I mean, you need healthy people to develop clean energy, right?)

The stories of the HIV/AIDS survivors of the 80s and 90s in this brilliant article brought up a challenging question for me: if you are lucky to survive a life-threatening disease, what is the collateral damage? These men survived, but there were severe physical, emotional and financial consequences – consequences they are still grappling with decades later. People tell me all the time, “they could find the cure for cancer tomorrow and you could live to 100!” Here’s the thing – even if the cancer-cure fairy visited tonight and cured all cancer, I still have four years of collateral damage. Four years of having drugs pumped into my system, my brain prodded and radiated. If I was cured and could stop all treatment tomorrow, there would still be questions of the effects cancer and treatment had on my heart, bone health, liver, kidneys, fertility, cognitive abilities. Even as my brain MRIs look good, I face occasional localized seizure and left-side weakness. If I do survive the next few decades, I fear early Alzheimer’s. I have sizable employment gaps. I have lost my innocence and many friends. I have had many experiences that should be joyful to young women – engagement, marriage, newlywed life – shrouded by a dark cloud. I was talking to an early-stage friend today about her post-cancer pregnancy and she told me that while she was eternally grateful for the chance to have a second child, the pregnancy was much more physically and emotionally difficult than her first one. Collateral damage is real, even for the lucky ones.

But let’s end this on a happy note – hope. Thanks to the advocacy of our Act Up brothers and sisters, HIV went from a terminal to chronic condition within a few years. HIV and cancer are not even remotely the same disease, but I still gather hope from how much medical progress can change a prognosis. At 24, a newly-arrived Peace Corps Volunteer in Swaziland, I was called to the homestead of a young man who was very sick. I thought he was too far gone. I thought I was going to watch his death play out. I visited him and braced for the inevitable. It never came. He took his ARVs and got stronger. He still experienced collateral damage, but he survived. I hope I will too.