#floridafriday

Who knew you could feel such paradise in your home state?

Florida is of course full of beautiful beaches, but I didn’t know the prettiest one until my family went to Key West when we took a cancer weekend break May 2014.

Now there’s a ton more I can write about Key West itself, but our trip out to Dry Tortugus was the best.

The first time we just did a day sail, taking us three hours south. We disembarked and took lots of pictures from the failed, crumbling fort, surrounded by pristine blue water. Eventually Younes and I got in for some snorkeling and saw gorgeous fish.

We because thrilled that we could stay over camping for at least three nights and decided to come back and do it. A year and a half later, we made it back. Everything had to be carried including water, food, ways to cook, toilet paper, fishing gear, etc.

We left at 6:30 to catch the ferry and the ride was beautiful being followed by playful dolphins. We disembarked at 10:30 and Younes shot the breeze with the captain, which meant we got an overflow campsite which we were able to change to a regular the next day.

We had lunch and settled in for a nap. By the time, we got up it was late after. We put our suits on and frolicked in the lukewarm waters.

Younes tried to catch us fish but was unsuccessful. So he started a fire on our fire pit and warmed up canned potato soup on it instead. Then I brought out the makings for s’mores, which I don’t think he was quite so excited as I was. It’s an American thing, I get.

We retired to our tent but rose around dawn to see the remnants of the night sky and the beginning of the sunrise. We then retired for another nap and then it was snorkeling time!

There was snorkeling gear for everyone on the boat and we snorkeled for hours. I saw such amazing fishes. I also tried to find an old shipwreck someone had told me about. But wait…was that a hammerhead shark? I didn’t investigate and instead swam fast in the opposite direction.

That’s when I realized I hadn’t seen Younes in awhile. Since he’s not the strongest swimmer, I was getting worried. He had gotten caught on the tide off the fort wall

and had to paddle the rest of the way around. He wore a lifejacket for the rest of the day.

We made spaghettios over the grill and then went to sleep while getting up once or twice to admire the night sky

The last morning we had to have all our gear ready for the boat at an early hour. After that, we had till 10:30 to play. Which I did, spending every possible second in the hour until we absolutely had to board the board.

Although I was sad to go, I had had fun dolphin watching and taking pictures on the way back.

Advertisement

#tbt -Lesotho

So I’m not doing so well healthwise. Which means until (if) thinks turn around, I’m not going to be doing too much out of state travels. So Tuesday’s and Thursday’s will both be dedicated to former travel.

Starting from the beginning in 2011, I left Swaziland and with a quick stop in Johannesburg, I took a mini-bus to the capital of Lesotho, Maseru. Knowing the lodge had little booked had little as far as food but a kitchen I could cook in, I stocked up on the staples – eggs, bread, cheese, etc. then I took a minibus to Malealea Lodge.

Malealea Lodge was a place so many of the guests could do overnight hiking and pony trekking, a huge tourism appeal. But once I saw the beautiful property, found out I would get a clean, simple cabin with a private bath and that the kitchen I could cook from was huge and that there was nightly entertainment, I decided to just do day trips instead.

I think it was a good idea. I made dinner (much cheaper than the backpacker provider dinner of 100R and listened to a Basotho children’s choir around the campfire, turning into my comfy cabin early.

The next day, I slept in a bit and spent the days exploring the grounds and nearby village. I brought some local produce – mostly onions and potatoes -enough for a big batch of potato soup – and I was glad I packed things in. I also made a reservation for a daytime hike the next day.

The hike was gorgeous and took us to a rushing waterfall. We we got back, I invited my guide for a cool beer at the lodge where we talked about Lesotho in general. That night, there was another bonfire and performance, where I met a Dutch family, who invited me for dinner. I already made my potato soup so we all shared and the invite,d me to a school performance in another village (they had a rental car) the next day.

It was delightful meeting the teenagers, especially the girls, who I hoped things would work out for. They were so bright but growing up in a male-dominated society would make things difficult for them. That night the Dutch family said goodbye to me but gave me their contact info for The Netherlands in case I was passing through later on. I tucked it in a safe place.

The next day was pony-trekking time. In this case I was in a small group. There were lots of mountains and cliffs but I trusted my pony -that was what they were make for after all. We saw gorgeous vistas and Basotho sketching in the sandstone and was just as happy get a shower and relax my sore body on a lounge chair afterwards.

The last day included another day hike and while I invited my guide for a cold beer afterwards, he took me for a shebeen (it was right on the backpacker groups so it was safe). Then I settled up with the front desk, took care of residual garbage in the kitchen, took a long shower, packed and enjoyed the grounds one last time. My mini-bus would arrive for me at 6:30 the next morning.

(Funny side-note. I was asked to do an exit interview at the. Order back into South Africa and got questioned on how much I spent in each category. When asked about food, I said 500Rand. “I think you mean 500USD, the agent said.” ‘Nope definitely 500R” I was impressed by my own frugality.)

Also, my pictures are on a computer I haven’t touched in years, so I will use stock photos and replace if/when I find my real pictures.

#tbt – Finally finishing the Spain narrative

How did I let this slip past me not just through the summer but through the fall and winter and almost to the spring as well? Oh well – I’ve been either busy or exhausted.

I made some mistakes planning this Morocco/Spain trip. I botched some things, did not communicate properly with the parties involved and tried to shove too many things into a small period of time. But if there was anywhere in the trip I redeemed myself as a trip-planner, it was Quentar.

You see, both my husband and nephew like the city for good food and drink, but really they yearn to be adventuring somewhere in the backwoods. So when I was looking for accommodation in Granada, I set my parameters some km out and found this gem.

Perfect! Affordable, beautiful surrounding and activities. A city bus would take us there for a few Euro. I booked us up.

The afternoon of our departure, Younes was fighting a ManCold so getting him to the bus stop was the hardest part.

But once we got on the bus, everything went smoothly. Halfway there, I emailed the guesthouse owner (who was German and spoke impeccable English) and he was right there to meet us in the town square.

We got to the guesthouse, checked into our modest but clean triple and talked to our host about hikes. With a quasi-plan for the next few days, we set out to the town center to pick up some groceries. The houses and building were a glaring white and the streets zigzagged up and down. It was very hilly and I was sweating and tired by the time we got back to the guesthouse.

Younes took his sick self to bed and Matt and I checked out the pool. The view was nothing less than spectacular and the cool water felt great on my hot skin.

I swam, sunned and enjoyed my surrounding until it was time to prepare dinner. I cooked up some eggs, sliced some bread and made a simple salad. We retired with the idea that we would see how Younes was feeling the next day before deciding whether to hike or not.

The next day, Younes was still sick, so no hiking as we were not going to venture too far afield without the only Spanish speaker in the group. I gave him some orange juice and Matt and I set out to town for medicine and beer.

We found a pharmacy where I was able to playact enough to get Younes’ medicines and a grocery store to get beer. Matt was disappointed about no hiking/adventure (although I was happy to have more downtime) so I suggested the next best thing – sangria. Yelp told me there was one open bar, called Bar Los Angeles. With that name, I didn’t know if it would “feel” Spanish but it did not disappoint. The sangria was refreshing and fruit-choked, the view was great and a cool breeze wafted through the outdoor seating area.

We chatted with a tour guide as we sipped our drinks who was also having some refreshments after a long morning. Her burro was tied up outside patiently waiting.

After two drinks, we made our way back to the guesthouse where Matt took a siesta and I gave Younes his medicine and then headed out to the pool for more relaxation. Eventually Younes felt well enough to join me. That night, we headed back to our afternoon cafe for more sangria, tapas and an amazing platter of jamon and manchego that I inhaled. It was a mild, very pleasant evening, one where I could not imagine being anywhere better.

The next day, it was finally time to hike to the reservoir. Even I was getting restless at that point. After twists and (wrong) turns, we finally made it to the reservoir. Matt and I stripped down to our swimsuits and hopped in. It was sooooo cold. But so refreshing at the same time. And once again – the view was really awesome.

When we returned to the guesthouse, I headed straight for the pool and eventually Younes and Matt joined me. We discussed dinner – there was a trout farm where we could get cheap fish caught from the reservoir. I went off to buy the fish while Younes and Matt had races in the pool. The walk to and from the farm was lovely. I was able to go at my own pace and appreciate the sights I had been too rushed to notice on our hike earlier.

When I got back with our extremely cheap fish (seriously, 5 euro for three huge whole fish), Younes and Matt treated me and took over the dinner prep. Younes cooked the fish and Matt made the salad. They both did a great job. We popped our bottle of cava to celebrate our last night in Spain.

The next day, we would split up, with Younes traveling to see his brother in a different part of the country and Matt and I beginning the long journey back to the US. But for that night, we ate, drank and fully enjoyed Spain.

#metsmonday – One year later

My father-in-law died one year and one day ago. This doesn’t directly relate to cancer but it kind of does.

I met Ba in the beginning of 2012, about six months after I met Younes. I found him to be a kind and family-oriented man, beloved by his wife, five children and many grandchildren.

I did not make it back to Morocco before I was diagnosed with breast cancer. Younes came to visit me instead. Then in late 2013 – bam, diagnosis.

Be encouraged Younes to be with me, which he did. We got married a few months later. If it weren’t for cancer, I would’ve tried to get travel visas for his family to attend the wedding, but due to cancer, we didn’t have the time.

I did a year and a half of intense treatment. It was so intense that there was not time for Younes and I to travel to Morocco. Finally, after 18 months, I got a brief reprieve. In late summer 2015, Younes and I went on the six-week trip that started this blog. We got to see Ba. Younes spent so much time talking with him and enjoying his company. I saw him hold his grandchildren and hoped for the day that I would put a grandchild in his arms – a child with a traditional Amazigh (Berber) name to celebrate their heritage that had been all too often denied by the Arab government.

That trip was the last time either of us saw Ba alive.

2016 and 2017 were swallowed up with mets. Surgery, radiation, chemo. Younes became the breadwinner. We didn’t have time to make it to Morocco.

2018 came and Younes became worried about Ba’s health. I was changing treatment and convinced him to wait until I was stable on a new treatment until we visited Morocco. I regret that now.

In mid-February, the news trickling in from Morocco made me very worried that Ba was in his last weeks. I told Younes to go without me. I was in screening for a clinical trial and couldn’t leave. He started to make preparations with his work. Since I was stuck in the US, I decided to attend a breast cancer conference.

Shortly after I arrived at the conference, I got the news that Ba was partially paralyzed on his left side. I thought “stroke”; in retrospect, he probably had congestive heart failure where blood was no longer reaching his extremities (my grandfather had died of CHF in 1995 and he had many of the same symptoms). But it didn’t matter, I knew in my heart then that he was going to die. Four years in Cancerland had taught me the signs. I only hoped I could get Younes there in time.

On February 24th, I booked Younes’ flights and he flew that night. When he landed in Casablanca, he received the news that his dad had already passed away. I couldn’t be with him because of the clinical trial screening but I knew that was the only way – to drop out of the screening could well speed up my own death and that wouldn’t help anyone. And it did pay off – I got 8 months of regression out of the trial.

But damn, the choices we have to make with this disease are so heavy. Cancer and the death of a parent at the same time? Like, can life cut us a break for two seconds here?

I am forever grateful for my wonderful friend Christine for supporting me that weekend. She distracted me, gave me advice on how to talk to Younes (having lost her own father to – guess what – effing cancer herself), and kept me track for my clinical trial screening. Even in hell, you can find angels.

Younes and Ba

#sciencesunday – Merry Zhristmas!

Also, it’s my five-year since cancer diagnosis-versary! I have no gratitude to cancer, but it’s kind of cool that I discovered that I really like science and I’m pretty good at understanding it. I mean, I’d rather be scientifically ignorant and cancer-free but when you have Stage IV cancer, you gotta take your silver linings where you can get them.

Wishing you all a blessed holiday free of medical drama!

#floridafriday – It don’t matter if we sit forever and the fish don’t bite…

OK, I gotta come up with better fishing songs then this quasi country-pop hit from the early 2000s but I’m lazy about titles.

Anyway, family fishing trip 2018 happened last Tuesday. It was a chilly (for Southern Florida) but sunny. Younes had to work but Mom, Matt and I headed out with Captain Houston around 8:30. The cool wind bit into our faces and the boat rumbled along and we shivered under jackets and sweats. But we ended up in the middle of shimmering water, far from signs of civilization. Houston prepped our rods and we cast them.

We got nibbles and a few too small to keep fish and then – bam. I reeled in a decent sized sheepshead.

Mom got the second sheepshead and it was a biggie.

I joked with Matt that if he didn’t start catching some fish he’d have to go without dinner. Well, he showed us up after we moved to a different fishing hole and he started catching trout after trout. He ended up catching the 5/8 fish we caught that day. I joked that he had earned not only his dinner but the next day’s lunch and dinner too.

The day was still mild and cool but the sun was out and warmed us. The weather could not have been more perfect. Mom joked that it was my turn to get one more but at that point I didn’t care. It wasn’t about the number of fish caught and obviously no one was concerned about “earning” their dinner – we’d all eat anyway. It was about the experience. The gentle sun and breeze, the birds skimming the surface of the water. The blue sky and green mangroves. That we only saw a handful of other little boats even though it’s busy season. The cold beer we drank on our way back to the dock. The hilarious sight of the pelicans fighting over the fish guts Houston would toss top them as he cleaned the fish. And partaking in a traditional but rapidly fading activity.

I asked Houston how many other guides there were. “About six.” I asked him if they were his age (middle aged) or if there were any younger ones. All his age or older. Most of the young people left the small fishing towns for college and better opportunities. They ones who stayed worked in tourism – but not as guides. Life for guides is difficult. Aside from normal expenses, the guides pay for their boats, gasoline, new motors, insurance, fishing equipment replacements, bait and whatever new technology (boat GPS, etc) that tourists expect these days. The summer season doesn’t bring much business because few want to be out when the heat index is 105 and a hurricane like Irma can take severely damage everything one owns. It’s no wonder young people don’t want that life but it’s always sad to see a way of life slowly disappear.

So if you ever get the opportunity to get out on a small, intimate fishing trip like this, make your guide’s experience as enjoyable as possible and PLEASE tip generously.

#metsmonday – Continuation of the beginning saga

Today, I opened my email and to my great surprise, I found an email from my employer from five years ago in NYC. Apparently there was a (very) old check sitting in their office for me – I must have forgotten to pick it up when I fled NYC right before Christmas, newly diagnosed with cancer and terrified of my future (or lack thereof). I sent in the form to claim the check and reflected on where I was five years ago.

I had already written about finding the lump. I woke up the next morning and thought “how does one find a doctor?” I was new in the city and had not expected to have find one until my annual was due in January. This was only the tail end of October. Finding a doctor seemed like such a simple #adulting thing to do, but in the past I’d either had medical care provided for me by the Peace Corps or university health services or my mom had hooked me up with someone in the practice she went to. And I so very rarely got sick – maybe a cold or a sinus infection every few years. Then there was the issue that I had never switched over my Blue Cross Blue Shield policy from Florida’s to New York’s. Would my policy even be accepted? And who should I see for a breast lump? A gynecologist? An internist? After several days of hand-wringing, I determined that I was indeed covered and looked online for gynecologists.

The first number on the list I called was accepting new patients. Score! But they had no openings until December. “I guess I’ll take it,” I said glumly. The receptionist must have heard the hesitation in my voice and asked me if this was for a general well-woman check or if I had a specific concern. I told her I had a breast lump. With that new information, she got me an appointment about a week and a half out. I felt stupid for not knowing to mention the lump at the beginning of the conversation.

I barely thought about it until the day of my appointment. I arrived in plenty of time, but sat two hours in the waiting room until the nurse called me in. It was clear she was going to be examining me instead of the doctor and I was kind of disappointed after waiting 10 days for an appointment and two hours to be seen but it again didn’t occur to me to say anything. (I look back at this five years later and am shocked that I used to be so passive). She looked over my medical history and noted that my paternal grandmother had had breast cancer. How old, she asked? 50s or 60s, I responded. Old enough that she didn’t have kids left at home but young enough that I didn’t remember. Well, which is it, she asked? I didn’t know and I was slightly annoyed that she kept asking. I mean, it didn’t matter anyway, I thought. She was old and I was young. Old women get breast cancer all the time but young women don’t. Still, I made a mental note to ask my parents for specifics over Thanksgiving.

She then did the exam. Afterwards, she said it was likely I had a cyst but I should have an ultrasound anyway. I was handed a piece of paper with the referral on the front and a list of imaging places on the back. I skipped out, happy to be one step further to crossing any nagging worries about breast cancer off my list. One more test and I’d be in the clear, just in time to enjoy the holiday season.

#tbt – Spain for the first time

2005. Age 20. I was young, skinny and drunk on both cheap beer and Europe. Ryanair flights were 1 euro plus tax to pretty much anywhere in Western Europe so I booked a puddle hopper while I was studying abroad in Ireland to go and visit a college friend studying abroad in Spain.

Being that I was still unfamiliar with Ryanair, I didn’t realize that the way they kept costs so low was by flying into airports outside of the main city (ie Brataslavia for Vienna). I landed in what I thought was my destination of Bilbao. I scanned arrivals. No friend. I waited…and waited…and waited. Now I was starting to get nervous. It didn’t help that we had forgotten to exchange foreign cell numbers. Back in 2005, smartphones, iPads and free WiFi at the airport wasn’t a thing. I didn’t speak Spanish. So I did the only thing I could think of. I called my mommy, in tears, so she could make it all better.

I don’t quite remember what happened after that, but mom managed to email my friend my cell number. She called and informed me that I was at the wrong airport. You see, all flights to Bilbao flew into the Santander airport an hour away. Since I had missed the Ryanair-provided bus to Bilbao, I would have to take a regular bus by myself. Which would be no problem if I knew some Spanish. I ran up to an airport employee, mumbled gibberish and ended up shoving my phone, with my friend on the other end, into her hand. GOOD JOB AMANDA. She talked to my friend and then directed me to the bus, where I was able to wordlessly exchange my money for a ticket and board with no further incident.

As the bus chugged along, I was taken by the beauty of Basque Country. When I arrived in Bilbao, I met up with my friend and was introduced to her host mother. That night and the next two days were filled with sightseeing, being introduced to Spanish specialties like tortilla espanol and kalimotxo and enjoying low-key hangouts with friends. Thirteen years after Ria Bilbao 2000 was launched and eight years after the Guggenheim came to the city, Bilbao still showed signs of it’s industrial past. But that was ok. I like my cities with some grittiness.

(BTW, this is a great website about the revitalization of Bilbao.)

Saturday night, we went bowling and then hit up the bars. Many beers and shots later, my friend and I stumbled to her host mother’s apartment. I woke up feeling like death but had to travel back to Cork that day. With a pounding headache and churning stomach, I boarded the bus to the airport. As the bus cruised hills, valleys and dramatic craggy vistas – different from the softer, greener vistas I was used to in Ireland – my hangover was temporarily forgotten. I could’ve sworn that the countryside was even more beautiful this journey. I vowed to return to Basque Country – a promise I fulfilled six years later.

#traveltuesday – Grand Granada

As soon as the bus made its way to the outskirts of Granada from our landing point in Seville, I could tell I was going to like this city.

It was the outline of the Sierra Nevada against the city. I was the dizzying array of ancient buildings spread out below. It was the bright blue sky. It was just the way the city felt.

At the Alhambra Zoom hostel, we checked into a cheap and comfortable triple room, next to a impeccably clean bathroom. That was all I needed to be happy – especially since the city center was steps from the hostel.

Matt was not feeling well the first night, so we got him some peanut M&Ms and water and walked around a bit. The city by night was beautiful and the weather was still cool.

The next day, the weather had turned to broiling as I realized this was the first time I had visited Spain during the summer. Hungry, we wandered around to find a place that did not have English menus. I thought that we were too close to the city center to to find a non-touristy place but alas, we found a small cafe where Younes (a fluent Spanish speaker) ordered us sangria and two big platters of tapas.

The sangria came out in huge glasses with almost enough fruit in them to make a second meal. They were perfect – light, refreshing and just enough sweetness without being overly so.

The tapas platters were massive and delicious. I particularly liked the manchego cheese, because CHEESE.

With that, we proceeded to take our overly stuffed bodies for a walk. Up the hills of Granada we chugged, the hot sun beating down on us. The views were, however, well worth it. Finally, we made it to a small park with sweeping views of the Alhambra and the city below, with the mountains backdropped against it.

After rest and picture-taking we walked back down to the city. I was hot and had one goal on my mind – cold cerveza. On our way back to the hostel, we stopped at a shady cafe to indulge.

A cool shower and a nap at the hostel perked me up and it was time to think about our night out. We wandered and had a drink here and there before ending up at the same tapas place we had been for lunch. Hey, if it ain’t broke don’t fix it, right? I indulged in a large platter of manchengo and jamon and gazpacho and of course more sangria.

The next day was our much-anticipated visit to the Alhambra. Younes and I were psyched to see the ornate palaces, the amazing intricate designs and the elegant gardens. We were not disappointed.

However, Matt was not overly thrilled with looking at a bunch of buildings, so we promised him plenty of sangria and tapas for putting up with playing tourist for hours on end – a promise we were happy to deliver on as we passed the rest of the afternoon away at a misty outdoor cafe in a lovely square.

Our time in Granada was concluded by sipping drinks – including an extra-dry glass of cava for me – in yet another square as our last night in Granada settled in on us.

#sciencesunday – ZDoggmd takes on medical cannabis

Pretty much everyone with any sort of serious or chronic medical problem has been asked at some point “Have you tried cannabis?” The idea of cannabis as a cure-all being suppressed by BIG PHARMA who wants to conceal NATURAL CURES in order to MAKE MONEY is pervasive. In a way, I understand it. The United State’s zero-tolerance approach to marijuana doesn’t make sense to me. After all, alcohol and cigarettes are very destructive drugs in the wrong hands and they remain legal. And cannabis, particularly CBD, does have some medical benefit.

I have personally researched whether CBD could be an avenue for me to either treat the cancer or side effects from the treatments. I have looked into whether cannabis could help my neurological effects from my brain mets, the nausea from treatment and the anxiety from living with metastatic cancer. The information out there is confusing and often biased one way or another.

ZDogg’s show on cannabis really helped me understand the scientifically proven benefits and non-benefits on its useage. I did find out that I would not get any benefit from using it to treat seizure-related episodes. “Particular type of rare childhood seizure disorder” doesn’t apply to me so I’ll stick with my Keppra and Western-based treatments to control the brain mets that have caused these seizures in the first place.

I have suffered debilitating nausea that stopped responding to Zofran on a previous treatment and am glad cannabis would likely provide some relief from that if I were in the situation of experiencing that side effect again. HOWEVER, due to the potential for liver toxicity and interactions with my anti-seizure meds, careful consultation with my oncologist and neuro-oncologist would be needed before I could begin exploring the possibility of medical MJ usage.

Obviously I do not want to think about end-of-life pain very much but I’m also glad that cannabis might help with that. It gives me some comfort in the dark nights when my mind goes to scary places. Again, CBD is not currently recommended as first-line and if and when to incorporate it would be a decision made with my palliative/hospice team.

Bottom line, I’m really happy that the US is finally moving towards marijuana legalization both for medical usage and just because I think it’s dumb that it hasn’t been legalized before. But as with any other substance, use responsibly. If using it for medical purposes, research and be informed as to side effects and interactions with other drugs. And please watch these videos because ZDogg explains it much better than I could (and he’s funny too!)