Cancer, CAR T-Cell Therapy, Clinical Trials, Multiple Myeloma, Multiple Myeloma in your 30s, Relapsed Multiple Myeloma

You’re Gonna Hear Me Roar

This year has been eventful. Not necessarily good. Not necessarily bad. Just eventful. I have high hopes 2018 will start a lot better than 2017. The year started with my blood work slowly creeping up where it shouldn’t, all the while my right eye was becoming smaller and smaller. What I thought was sinus related turned out to be a plasmacytoma behind my eye. After several MRIs, a PET scan, surgery in April and radiation in May, the tumor was gone and I was starting to get used to my new treatment regimen of chemo (Pomalyst), immunotherapy (Darzalex) and more fucking steroids.

30 pounds gained and a lot of sass later, the doctors reduced my steroid dose along with the chemo in May. When my blood work started rising again this Summer, I went back to Emory in August and they increased the chemo and immunotherapy to the max doses. Thankfully the steroids are still at 30 mg per week as opposed to the 100 mg per week I was initially taking. I’m not eating six (full) meals a day anymore, but I have not lost all of my steroid sass. I am a lot less likely to actually punch someone in the face for annoying me or to pull a gun on someone in traffic for cutting me off, but I still have fantasies related to both scenarios. I’d just drive my car into vehicles that piss me off, but I like my car too much to do that to it. This is precisely why I don’t carry a weapon: you’d absolutely see my ass on Live PD acting crazy. I’d be a regular fixture just like that hotel off Bush River Road behind the old strip club. I’d be all, “What up Kevin Brown?! I love you, you can’t arrest me even though I just shot this person for driving like an idiot! Arrest his/her stupid ass!” Although if I cooperate they may let me go. They let a guy go last week who had a crack pipe between his legs and a rock on the car seat. I guess smoking a little crack might technically be a little less dangerous than actually shooting someone, but I digress…

When asked by nurses this past Spring if my appetite was okay, I really didn’t feel it necessary to garner a response. What does the scale say? I’m pretty sure I look like I haven’t missed too many meals. As Weird Al so eloquently put it, I have more chins than China. I can’t even get a good selfie angle at this point. Maybe y’all could give me some of that chemo that’ll make me puke and counteract some of this fucking overeating I’m doing. K. Thanks. I suppressed the steroid induced rage, increased by my disgust over the weight gain, and held it to a slightly saucy, “yes, it’s a little too okay.” And yes, I’m completely aware that I should be thankful I can actually eat and hold down food while I’m being treated for cancer. I realize I’m lucky (but let’s get real for a second, I’d be a whole hell of a lot luckier if I just didn’t have cancer). Regardless, I still reserve the right to be pissed that I gained 30 pounds. When I referenced eating six full meals a day I wasn’t exaggerating. I’d wake up at 3:00 am, my stomach growling, and have to get up to fix myself a snack, which usually consisted of peanut butter on a piece of wheat bread since I didn’t feel like getting fancy at 3:00 am. And I sure as hell can’t sleep well when my stomach is growling. Typically that’s when I start dreaming about eating cake. And then all I want the next day is fucking cake, which is awesome when you’re already over eating. Peanut butter on bread was probably the better option.

I completed radiation at the end of May and the treatment was simple and straight forward: 10 treatments that took about five minutes each, including the time it took the techs to get me properly situated on the table before they zapped me. My right eye is officially the appropriate size now (it’s still slightly smaller than my left when I smile or imbibe) and my follow-up PET scan came back indicating my head is clean (of tumors, anyway).

I started working out again regularly over the Summer and had lost about 12 of the pounds I gained in the Spring. I was pretty excited about my progress, but ever since they increased my chemo in late August I’ve pretty much stayed sick. I get over a cold and a few days later I either relapse or catch another. I give myself shots two to three times a week to stimulate white blood cell growth (to help my immune system), but that hasn’t seemed to keep me from catching everything I come in contact with. Being sick for roughly two months has put a strain on my ability to work out, but hopefully I’ll be able to stay healthy long enough to get back into a good routine because this moon face has got to go.

My latest health related development is that the increase in meds isn’t making me any better. I’m not getting terribly worse, but the Myeloma is still progressing. I could take this as bad news, but honestly I’m not that upset about it. I went back to Emory a couple of weeks ago and my doctor let me know I’ll be included in their clinical trial for CAR T-cell therapy. I have wanted to get in on this treatment since I read about it last year, so I’m actually excited. CAR T-cell therapy is working well for folks who have other types of blood cancers and have tried multiple treatment regimens with no success (it’s been tested a lot with different types of Leukemia and actually has two FDA approvals now), and the first phase of the clinical trial for Myeloma had pretty remarkable results, although the study was very small.

I go back to Emory December 5th to sign consent forms and learn more about the clinical trial and schedule for treatment. For now my doctor has added another chemo to the mix (Cytoxan) in order to keep me stable until I start the clinical trial. Since I’m on so many meds, I’ve arranged with my manager to work from home for a while to try to limit my exposure to sick people and keep myself as healthy as possible leading up to the clinical trial. The day of my last appointment was the same day Emory actually received their approval from the federal government for the trial, so I’ll get a lot more information during my next visit.

I will try to explain CAR T-cell therapy in the least scientific way possible (bringing this shit down to my level because science was never my thing). The doctors are going to harvest some of my T-cells (white blood cells) and genetically modify them to fight my disease. This modification is very personalized based on a person’s individual diagnosis, and the cells will ideally fight only the diseased cells and leave healthy cells alone (as opposed to chemo which attacks both unhealthy and healthy cells). The modified cells will then be left in the lab to multiply to billions of cells, a process which can take anywhere from two weeks to a month. Prior to the harvest and after the harvest while my cells are multiplying like bunnies, I’ll be getting some other type of chemo cocktail. I’m not sure yet what that will be, but I’ll know more when I go back to Emory in December.

When my cells are ready, I get to experience another extended stay at Emory Hospital where the food tastes like what I’d imagine some shit off a Garbage Pail Kid sticker tastes like (I’m guessing a very specific demographic will get this reference – I have a very vivid childhood memory of a Garbage Pail Kid sticker I put on my bedroom door that had a girl on it jumping rope with her own snot, which honestly, I feel like I could do right about now).  Well, it either tastes like that or like something from Guy Fieri’s restaurant (yes, I have expanded my hatred of Rachel Ray and Sandra Lee to also include Guy Fieri’s irritating ass). Thankfully I know what to expect and I can bring in my own groceries. And hey, maybe I’ll lose some of this steroid weight! I’ve been told I’ll be in the hospital for two weeks when they infuse the prepared cells into me, and I’ll have to stay in Atlanta for two weeks after I am discharged so the doctor can closely monitor me.

Obviously there are risks with the procedure, as there are with any procedure. My stem cell transplant could have killed me. The chemo I’m on can cause Leukemia. This is what I want to do because my actual body will be the medicine it needs to fight my disease. I can ideally stop taking so many drugs and possibly have a more normal life. I’m hopeful this will work, as it has for a lot of other people who had run out of options and were told there was nothing else that could be done for them. Average life expectancy for someone with my diagnosis is five years, and my doctors and I are working hard to turn that into 50 instead, so I’m down with trying the latest scientific advancements available, even if I’ll essentially be a lab rat. I will be a walking GMO when I’m done and I’m totally cool with that.

Meanwhile, it’s my absolute favorite time of year. I’m such a kid from October through December. I love Halloween, Thanksgiving, Christmas and New Year’s. I love decorations, lights and (real) Christmas trees. My sense of smell (which I lost last Summer) is starting to get better, so I’m hopeful I’ll be able to smell our Christmas tree this year. We’re doing our best to keep Olivia’s life as normal as possible through my treatment adjustments, so she just started ballet lessons. She’s wanted to take ballet for a while and we thought this might be a good time to get her into it so she has something else to focus on. After her first class, I was talked into letting her be in The Nutcracker this year as a mouse (and maybe a Bon Bon) and she is so excited. As a former dancer, I’m doing my best to control my inner Dance Mom. But I’m absolutely delighted on the inside.

Typically I get a case of the post-holiday blues, but this year I should be pumped for the CAR T-Cell therapy. The doctor said I’ll probably be in Atlanta in January, so we shall see. In the end, all of this is good and I feel like this is the best opportunity out there right now to get me better. I’ll rock this shit. I’ll roar for sure.

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Relapsed Multiple Myeloma, St. Lucia, wanderlust

Buy the Ticket, Take the Ride

No sympathy for the devil; keep that in mind. Buy the ticket, take the ride…and if it occasionally gets a little heavier than what you had in mind, well…maybe chalk it up to forced conscious expansion: Tune in, freak out, get beaten.

Hunter S. Thompson, Fear and Loathing in Las Vegas

I like to think of being diagnosed with cancer as forced conscious expansion. Before I was diagnosed with Multiple Myeloma in 2015, I had planned numerous vacations that John and I never took. “We’ll always have time,” I would think to myself. I planned trips to Jamaica, Whistler and St. Lucia among others. St. Lucia was originally where we wanted to go on our honeymoon, but because I wanted all-inclusive (I wanted to do as little planning as possible after planning the wedding), it proved to be too expensive. Mexico or bust!

After the diagnosis I decided we needed to get busy making memories instead of just planning to make memories. Obviously my priorities shifted after receiving the news I had an aggressive form of cancer, which is treatable but likely to return in the future. Queue the forced conscious expansion. I took some advice from one of my favorite authors, Hunter Thompson, to buy the ticket, take the ride. I forgot about comfort zones, booked a trip to St. Lucia at a small hotel and made plans to rent a car while we were there so we could go where we wanted when we wanted. I suppose I didn’t completely forget about comfort zones because I did make sure John felt comfortable sitting on the wrong side of the car and driving on the wrong side of the road before I committed to renting a car. There was no way in hell I was going to be driving us around, which was an appropriate decision because I would have killed us.

I don’t feel like it’s been nine months since the doctors told me I had relapsed, but I guess time slips away from you when you’re busy. June 2016 was challenging for our family, between increasing my chemo, catching an awful cold and then dealing with Olivia getting sick too, it could have been better. Poor John had to bear the brunt of it and although it drove him mad at times, he dealt with it like a pro. I was going a little crazy because I was sure the cold was going to turn into pneumonia, I’d get thrown in the hospital and the doctors would tell me I couldn’t go to St. Lucia. If you had seen the gunk that was coming out of my lungs, you’d understand my paranoia. I’ll spare you the details, but if I didn’t have cancer already, I would have thought I had lung cancer.

I’m still dealing with some residual effects of that cold, mainly the fact that I’ve lost my sense of smell. I guess if one of my senses has to go, that one is preferable over the other ones, but I really miss being able to smell. Not being able to smell all of the delicious food permeating the house on Thanksgiving was discouraging, but I reminded myself I’m thankful that my other senses are intact (mostly – taste is a little muted with no sense of smell). And, you know, that I’m alive. It’s the little things. I will say that with the early return of spring in South Carolina, I am not upset I couldn’t smell the Bradford Pears blooming. The trees are pretty, but they smell pretty rank. In the words of Larry David, it’s an olfactory nightmare. The smell is what I would imagine underwear smells like after someone wears a pair ten days straight without washing them. That’s the classiest way I can describe it. There is an abundance of Bradford Pears in the parking lot at work, so hallelujah, I can’t smell.

My two cycles of intensive chemo ended at the beginning of July and I went in on the 11th to have a full Myeloma panel run along with my regular weekly blood work. It takes a couple of days for those results to come back from the lab, so I stalked lab results online until the numbers were posted. I noticed the results were available when I logged in one last time before going to bed on the 13th. I saw that my Free Lambda Light Chains, which had been high and were increasing so quickly back in May, were now at normal levels. I saw that my MSpike had gone from .7 to zero. I slept that night without having stress dreams for the first time since the end of May. Now it was time to get in gear for our upcoming trip to the Caribbean!

Although our vacation to St. Lucia was originally planned as a way for us to celebrate being a year cancer free, we had a lot to celebrate on our trip after seeing the results of my blood work. John and I flew out on July 16th to go to St. Lucia for a week with the intent to celebrate life and my positive medical results, as well as to unwind from the events of the past couple of years. We had not had more than a night away to ourselves since Olivia was born in 2013. I’m not counting the week and a half John stayed with me at Emory during my stem cell transplant as time for ourselves, although I have a great appreciation for having spent that time with him, even if some of the things he witnessed there have no place in our marriage until one of us is 75 or older. He loves me a lot.

The flight to St. Lucia was relatively painless, even though we flew out of Charlotte. Every other time I’ve flown out of that airport it’s been a huge pain in the ass, but the torture was minimal this time. Charlotte has a direct flight to St. Lucia, so we couldn’t beat it on price or convenience. The biggest nuisance was maneuvering around our 70 pound bag, which was one of two checked bags. Shut up – I know what you’re thinking. I need clothing options and my shoes are heavy. The ones that aren’t flip-flops are, anyway. I wore almost everything I packed for myself. And in my defense, we also packed an SLR camera and its accessories in that bag, which accounted for roughly 10 of those pounds. Additionally, we had to pack our own beach towels, and everyone knows beach towels take up a lot of space. Next time we go somewhere for a week I’m just checking three bags. Lesson learned.

It seems that the airport in St. Lucia has one incoming and one outgoing flight per day for each major international carrier. When we landed, two other flights had landed just prior. The timing caused a huge backup going through Customs. We entered the airport, took one look at the lengthy line that had found interesting ways to twist about the airport outside of the zigzagged rope section, and we knew we would be there at least four hours waiting. That estimation is not at all an exaggeration.

Soon we noticed people being plucked out of the line and taken to a room off to the side. They would emerge and go on their merry ways to begin their vacations, skipping this horrendous line. John and I wondered what we needed to do to be selected for this special treatment. I told him I didn’t care if they were doing full body cavity searches in there; if that’s what it took to skip this line, I’d oblige. As we were not far from being last in line, I attempted to put on my most pathetic face so it might persuade the lady scanning the crowd to pick us. After about an hour of waiting and not much forward progress, we were selected to go into this special room! Luckily we were able to forego any uncomfortable searches. We handed the nice man behind the door our paperwork, got our passports stamped and were on our way! We thought. The folks just beyond baggage claim told John he needed to change out of his camouflage shorts because they’re illegal. They gave no other explanation. Several other men donning camo were seen turning around at this point to change. Uncertain of whether this is an airport rule or a national law, John decided against wearing those shorts for the remainder of the trip.

Our poor driver, Richie, had been waiting for us about two hours by the time we finally made it out of the airport. He picked us up in the sweet Suzuki Swift (it’s smaller than a Fiat, I swear) that was to be our rental car for the week and drove us to our hotel, stopping on the way to show us the locations of excursions as well as to get us a couple Piton beers to drink on the way. Apparently in St. Lucia they don’t frown upon drinking and driving quite like we do here in the States (party on).

Our sweet rental car (somehow this car got us through some really rough roads):

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Richie was awesome and definitely set the tone for all of the amazing and helpful people we would meet throughout the week. He and John bonded quickly over their mutual adoration of motorcycles. Richie let John know there isn’t a decent motorcycle mechanic on the entire island, so of course we started planning our impending move to paradise so John could help these unfortunate people.

Then I saw the hospital in Soufriere and decided I should probably try to reside close to a Myeloma specialist, or at least close to modern medical facilities. After some further research I did determine that the hospital in Castries is a bit less third world, but statistics do show a longer survival rate for high risk MM patients when treated by a Myeloma specialist. So my backup plan is to move to Salamanca, Spain since there is a Myeloma specialist at the university there. I spent three weeks in Salamanca studying Spanish in 2000 and I’d gladly go back if shit hits the fan in the US, which seems to be imminent. Plus, siestas.

The hospital in Soufriere:

We finally arrived at our hotel with just enough time to get settled before happy hour and dinner that night. We stayed at a boutique hotel called Crystals, which is set in the rainforest covered hills over Soufriere, overlooking the ocean and the Pitons. This is a family owned and operated hotel, and while it doesn’t have all the amenities of an all-inclusive resort, the personal attention we received from the staff was unbeatable. Jessica, the daughter of the owner, was waiting out front for us when we arrived. She helped me with my reservation and answered all of my questions leading up to the trip, and she greeted me as if she already knew me. John and I immediately felt welcomed. Jessica led the way to our villa and gave us the tour upon arrival. John and Richie carried all 130 lbs. of our bags up the hill to our room (again, shut up). We were the last villa at the top of the hill, so carrying the bags was no small feat. Thank you, men. I typically had no issue going up the hill, but coming down in wedge heels proved to be a challenge. I often made John walk in front of me while I held onto his shoulders as I took baby steps down the steep decline. My clumsy ass made it the whole week without getting hurt!

The only real tragedy that occurred during our trip was my flat-iron not working with the voltage converter I brought. After a little research, John found something online about converters having a hard time working with technology that uses LED lights. There is one tiny LED light on my flat iron that indicates the power is on. Ugh. Alas, I had to wear my hair curly the entire week; there was no taming my mane. Luckily I played with some curly styles before we left knowing I’d get it wet on the beach and not have a choice, and I discovered I could tolerate it if I wore it in a headband. It didn’t keep me from being annoyed I couldn’t actually do my hair when we went to dinner at night, however.

Before we did anything, we popped the bottle of champagne waiting for us in the fridge and enjoyed a glass on our deck. When I made the reservation over a year prior, I asked for the room with the best views of the ocean and the Pitons. The view definitely did not disappoint. Several mornings I found myself awake at 6:00 am (because the sun rises there at 5:30 am and I couldn’t make myself go back to sleep) just sitting on our porch and taking in the scenery. It was truly breathtaking.

We changed clothes and headed to the Treetop Bar for drinks and dinner. That is where we met the owner, Martin, and his wife, Monica. They were definitely a highlight of our trip. Martin is laid back and hilarious, and he’s more than ready to get you buzzed off his rum punch during happy hour. This isn’t your typical rum punch, either. It changed daily, according to the fruit that was picked on the property that day. That makes it healthy, right? Monica is also a character. She’s an expat from Ireland (I only wanted to say that because John hates the word expat and I wanted to get it in here somewhere to annoy him – I love you, Boots) and she was always immaculately dressed, but she took it to another level in the evenings by wearing formal wear. As in evening gowns. The hotel wasn’t all that formal, but I suppose she just likes getting that dressed up. Every. Single. Night. She’s an excellent hostess and makes sure her guests have everything they need.

We ate a fantastic dinner at the hotel while we listened to a buzzed out Martin sing and jam out on his guitar and keyboard. His musical prowess was definitely an experience all on its own. After dinner, we went back to the room and enjoyed the deck for a bit before we collapsed into bed.

So here’s a rundown of our trip…

Day One

Soufriere (Crystals is one of the dots in those mountains pictured):

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View from the Treetop Bar:

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The Papaya Cottage (that outdoor shower was amazing):

Day 2

I woke up at 5:45 am on the first full day and couldn’t make myself go back to sleep. The early sunrise mixed with all of my excitement made it hard to sleep in.  I sat on the porch that morning, read my book and watched the birds until breakfast was delivered at 8:30. Every morning, we were presented with coconut pancakes and honey, an assortment of fresh fruit from the grounds of the hotel, some of the best scrambled eggs I’ve ever had and a bread basket with butter and mango jam. We never got tired of the breakfast, and we particularly enjoyed what I can only describe as fried biscuits along with the mango jam.

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As we were cleaning up breakfast, we noticed this fellow hanging out on the windowsill:

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I might have screamed a little. This is definitely not a hotel for people who do not like nature. Only the two bedrooms were air-conditioned (I used the second, smaller bedroom to get dressed and put on makeup – it worked out really nicely to have the extra room), so you often had to keep doors and windows open to create a draft in the living area. This was fine as long as it wasn’t raining, and at night it cooled off enough outside so it wasn’t uncomfortable inside. It was also fine as long as we only opened the screened doors and windows. One morning we had the two doors open by the dining table and a bird flew in and tried to finish our breakfast for us. We learned our lesson quickly.

Once I calmed down from seeing that hairy mammoth of a spider, we headed down to talk to Jessica. She drew us a map of the area, marking restaurants, excursions and shops along with prices. This map was our lifeline while we were there. In planning this trip, we decided to stay in a boutique type hotel and rent a car rather than stay chained to an all-inclusive resort for the week. I am so glad we planned it this way (when I say we, I should really say I because John plans absolutely nothing).

I came with a loose plan of things we wanted to see, do and eat while we were there. The fact that I didn’t have this trip planned to the minute is shocking, but I really wanted to relax on this vacation and didn’t want to have to plan time for relaxation. If it’s forced, it’s not real. If we woke up one morning and wanted to spend the day on the beach, fine. If we wanted to spend all day on our deck in our pool, perfect. We had the option to come and go as we pleased without having to rely on someone else to take us places and we could really explore our surroundings. All of the beaches in St. Lucia are public, so we were able to scope out different areas and determine our favorite spots.

We finished talking to Jessica about excursions and restaurants she recommended and decided to go to lunch downtown and then hit up the beach. We went to a place called Ruby’s for lunch. We ate here two or three times while we were there. It was affordable and they had a damn good burger, good pizza and this really amazing macaroni and cheese. As a Southern woman, I can be a bit discerning about my mac and cheese, and I was pleasantly surprised that it was so good. The only thing I took a picture of at this meal was my beer:

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After lunch, we took the scariest drive I’ve ever taken to the beach at Anse Chastenet. Most people around there will tell you this is their favorite beach. The island’s most expensive hotel, Jade Mountain, is there. Don’t get me started on this hotel. It looks amazing, but I wouldn’t pay $10,000 for a week in a room with no A/C and only three walls. The beach at Anse Chastanet has black sand and the water has a blue/green hue. I liked the beach, but I was not at all interested in taking the drive again. Narrow, unpaved mountain roads are not my bag. Especially when your husband tells you he’s flooring it going up a mountain and you feel like you might actually start going backwards. Then you look over the edge of the road and realize one mistake would send you plummeting to your death. If we couldn’t make it up the steep incline, there was no turning around on this road. John is an excellent driver, but I don’t think he could have reversed it the whole way down at that point. Luckily we made it up. Barely. I tried to distract myself from the horror of the drive by taking pictures, which didn’t really work. I did manage to get a really good shot of the Pitons though:

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Here are some shots of the beach:

After the beach we headed back downtown to grab some necessities from the grocery store. Going to the store was one of the most stressful parts of the trip (other than the aforementioned drive). It was small, there were people crammed everywhere in there, and it was hard to get your bearings and determine where things were in the store without getting in someone’s way. I hated going to the store. If we go back, I’m going to request they stock our kitchen before we get there. This is an option, but because I didn’t know what they’d have at the store or what we’d really need, I didn’t take advantage of it. I think we ended up just getting bottled water, booze, noodles and stuff for PB&Js. You know, necessities.

The grocery store:

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We got back to the hotel at the tail end of happy hour. We ended up staying at the bar the majority of the night talking to Martin, Monica and some of their friends who were there for the evening. It was some really intriguing conversation with folks from all over the world: Turkey, England, Ireland and St. Lucia. They all live in St. Lucia now. Brexit and the U.S. election were the main topics of conversation, as they were dominating world news at the time (I’m not sure too much is different six months later). It was nice to get a world view on our local politics.

The folks clued us in to the fact that St. Lucia was having their big Carnival celebration the next two days and the majority of the island would be shutting down (resorts would still be open, so we took the opportunity to eat at a couple of the nice resorts in the area). We considered going into Castries for Carnival, but we made the decision to avoid the huge, drunk crowd. I think we made the right decision as tourists not familiar with the area yet.

Day 3

We spent the whole day at Sugar Beach the third day. Every time someone mentioned Sugar Beach to us while we were in St. Lucia, there was an obligatory, “It’s where Matt Damon got married!” And then all I could think about is Team America: World Police and them saying “Matt Damon” the way they do in that movie, and I’d laugh on the inside.

Sugar Beach was a little farther away than Anse Chastanet, but the drive was much less scary (as in the road was at least paved). We got a little confused about where we were supposed to park on the way in and ended up making a pit stop to visit a hot spring. The water felt amazing (as did my skin afterward), but it was a little crowded, so we didn’t stay at the spring long.

Sugar Beach lies between the Gros and Petit Pitons and Sugar Beach Resort is the only property with permission to build on that land. The beach has white sand with crystal blue water, and because I didn’t have flashes of dying on the drive in, we decided this was our favorite beach. We savored the view of both Pitons while we lazed on the beach. The food at the resort restaurant, while overpriced, was delicious. I still drool over their jerk chicken skewers. And I may have gotten half drunk off one mixed drink from their bar. I didn’t even care that it cost $16 if they put that much liquor in it and it still managed to taste good.

Here’s a shot of our view at lunch that day:

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I tried to get a panoramic shot capturing both Pitons, but this is how it turned out (womp womp):

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The small one is on the left side of the photo and the larger one is on the right. I never really got a picture that truly captures the magnificence of the larger one, although I tried. It was hard to get the whole mountain in the frame that close up.

We had dinner that night at Ladera, another resort in Soufriere. This is highly touted as one of the best restaurants in the area, as the views are phenomenal. It’s positioned in the mountains above Sugar Beach, so having drinks and dinner between the Pitons while the sun sets is truly a religious experience, even for someone like me who isn’t particularly religious. The food was impressive, but it wasn’t the best we had while we were there. We wouldn’t have the best until we went to Boucan by Hotel Chocolat a couple of days later.

View from the restaurant at Ladera (these deserve full size images):

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If there is a Heaven, it’s in those clouds.

Day 4

Tuesday we spent the whole day on our deck swimming in our pool, lying out in the sun and drinking local coconut rum and pineapple juice. Ah, day drinking in the sun; something I used to do frequently on weekends before I had a small human to look after. My how things change when you don’t just have yourself to worry about anymore.

Here I am with my finger on the Gros Piton (I couldn’t stop myself). It’s fairly overcast in the picture, and since we were staying in a rainforest, we fully expected daily rain. Luckily storms roll in and out quickly there.

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Day 5

Wednesday we decided we’d hit up Boucan for lunch and then go to the Botanical Gardens and see Diamond Falls.

Boucan is located at Rabot Estate, St. Lucia’s oldest cocoa plantation. I literally didn’t care where we ate the rest of the time we were there as long as we got to eat here. If you know me at all, you know my appreciation for chocolate runs deep. Here I am trying to contain my excitement about eating here. I’d probably look more excited if I wasn’t pissed about not being able to straighten my hair.

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The restaurant at Boucan incorporates the cocoa grown on the plantation into all the dishes. Lunch was insanely good. If my memory serves me correctly, John ate three burgers while we were in St. Lucia, but the burger he had at Boucan was the best. It sounds odd that he’d go to St. Lucia and eat a bunch of burgers, but the first one he ate at Ruby’s was so impressive he continued to order them other places. The burger at Boucan  was made up of ground beef and a twist of cacao, gruyere cheese, local smoked bacon, cacao beer onions, and it was served in a cacao pod shaped homemade bun. I had a steak panini with a similar theme: twist of cacao, gruyere and cacao beer onions. For dessert, John had the chocolate lava cake with cacao nib infused ice cream and I had the chocolate tart with hazelnut praline ice cream. Lunch ended with two chocolate truffles that melted when they hit our tongues.

After lunch, I pulled a MacGyver and changed in our tiny clown car from a dress to more hiking friendly clothes in preparation for the Botanical Gardens. I was super excited to get loads of pictures with the SLR camera my brother was nice enough to let me borrow. Unfortunately, the camera didn’t like the memory card I put in it and it stopped saving pictures right before we got to the waterfall. HUGE fucking fail. Luckily John took pictures of the waterfall on his phone, but I lost all the “pictures” I took on the way back out of the gardens.

Here a few of my favorite shots from the gardens:

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When we got back to the hotel, I took a short nap and woke up to the sweetest surprise from some of my friends at work. Jessica came to our door and let John know they had arranged for us to have a couple’s massage. John woke me up with the news of the gift and I started to fight back tears. The best thing about where I work is the thoughtful people I work with. They knew we had a bit of a rough start to our summer and wanted to do something special for us, and they figured out how to contact the hotel where we were staying because I had checked in on Facebook. On our way out to dinner at Ruby’s that night, we arranged to have the massage on our deck the next morning after breakfast.

Day 6

While we were eating breakfast on Thursday, John admitted he was a little nervous about our upcoming massage. I couldn’t talk him into a couple’s massage while we were on our honeymoon, so I was a teeny bit excited we received this one as a gift so he couldn’t turn it down. I knew if he just did it he’d like it. I was so right; it was a perfect way to start our day. Here’s to many more couple’s massages when we’re on vacation in the future.

After we chilled a bit and let the coconut oil from the massages soak into our skin, we decided to go back to Sugar Beach for the day. We wanted to go to a restaurant called Martha’s Table for lunch on the way (it’s a favorite amongst locals), but to our dismay it wasn’t open, so we had to spend entirely too much money for food at the restaurant on Sugar Beach. At least I got another strong cocktail with my lunch.

On the drive down the mountain on the way to the beach, John noticed I was a little more relaxed than usual. Typically I was gripping the “oh shit” handle or the door handle with one hand and bracing myself on the glove box with the other. This day I was singing and dancing along to music, and he commented that I must be getting used to the roads there. Although some of it might have been the massage we had that morning, I explained that I may have taken a higher dose of Xanax before we left to see if that would quell my fear of falling off the side of the mountain and dying (the Blue Ridge Parkway ain’t got shit on these roads, and it’s terrifying enough for me). Regardless of whether it was the massage, the higher dose of meds, or a combination of both, it was nice not to be all tweaked from the car ride when we arrived at the beach.

After sitting on the beach for a while, we decided we’d rent some snorkel gear and spend some time in the water. Snorkeling ended up being one of my favorite activities of the trip. The salt content of the water was so high we could literally just float there without doing any work when we got tired of swimming, so we stayed in the water a long time exploring the reef and the fish.

After a day of sun and snorkeling, we headed back to the hotel to get ready for dinner at Boucan. Because I needed more chocolate (I am in a perpetual state of needing more chocolate). For an appetizer we shared the risotto with mushrooms, local spinach, cacao nibs and pumpkin seeds. We both had steak for dinner; John had a ribeye and I had a filet and both came with a cacao-peppercorn jus. For dessert, I had the intensely rich chocolate mousse with praline ice cream and almond dacquoise and John decided not to stray from the chocolate lava cake. Like lunch, dinner was finished off with two truffles, this time chocolate with peanuts.

Day 7

Friday was by far our favorite day of the trip. Jessica arranged a day sail for us, starting from Soufriere and going up the coast to Marigot Bay and back. Marigot Bay is where they filmed Dr. Doolittle (the original, not that piece of shit remake), which was one of my favorite movies growing up. The eight year old in me was jumping with anticipation thinking about visiting the spot where they filmed the movie.

Only one other couple from the hotel came along, so we had a very intimate experience. We left in the morning after breakfast and drove down to Hummingbird Beach and waited on the jetty for the boat to pick us up. While we waited, we made some small talk with the two who were joining us. They live in Brooklyn and were on their honeymoon. The girl seemed very uneasy, and I quickly learned she gets seasick and was terrified to go on this sail. Her husband wanted to go, so she took one for the team and agreed to the outing. Good for her, I guess, but she seemed miserable pretty much the whole day. I’m positive John and I had a lot more fun than they did. To put it bluntly, we’re laid back and always ready for a good time, and these two had sticks up their asses. I’m sure they thought I was insane. I am aware that I’m an acquired taste, especially when I’ve had a few drinks (I get very intense and very loud). That wasn’t going to stop me from enjoying every minute of this day.

John and I set up camp on the bow of the boat, while the other couple stayed in the back near the cabin, so it really felt like we had the boat to ourselves. On the way to Marigot Bay, we saw dolphin swimming, stopped for some snorkeling and, of course, imbibed a little (what’s a boat ride without a little booze?). We ate lunch in Marigot Bay and spent time on the beach, where the guys had some fun on the rope swing there. On the way back to Soufriere, we stopped for more swimming and spent some time on a secluded beach while our guides spearfished. We drank even more rum punch, had a lot of fun getting to know one of the guides and finally made our way back to Hummingbird Beach. John was buzzed enough to be brave and climb about 50 feet up a cliff and jump off into the ocean. He did a bit of a backflop into the water and got a nasty bruise on his leg, but seemed to enjoy it nonetheless.

I’d be remiss if I didn’t mention the kid who approached me while John was climbing the cliff. He was about 13 and he remembered me because he sold us some fish made out of palm leaves earlier in the week when we were downtown walking around (a lot like the sweetgrass flowers you see in the lowcountry of SC). He walked up to me, lit joint in hand, wanting to sell me a little something other than decorative fish. What a young little entrepreneur. I bet he makes more money selling weed to tourists than he does selling those palm fish.

After John limped out of the water, we headed back to the hotel and ate our last dinner there at the Treetop Bar. After a day filled with rum punch and an evening of wine with dinner, I teetered back up the hill to our room to spend our last night in the lovely Papaya Cottage.

Here are some pictures of our last day in St. Lucia (and one of John’s carnage from his cliff jump):

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Richie drove us back to the airport Saturday and we headed home. We spent Sunday and Monday with Olivia, swimming in the pool and having fun at the lake. We returned to normal life after vacation and I’ve been so busy at work I haven’t had the attention span to write in my spare time. When I realized how long it had been since I last posted, I decided I needed to make some time. The fall was slammed with birthdays, our fifth wedding anniversary and trips to Syracuse and Charleston for weddings, and then we went straight into the holidays. Luckily, all of our personal commitments lately have been fun, so I can’t complain about having too much fun stuff to do. We have a couple more weddings coming up this spring and I’m particularly excited about one of my best friends getting married in May. We’ve been friends since high school, were roommates for our sophomore year of complete debauchery in college, and we still enjoy finding trouble with one another (although we don’t find quite as much trouble as we did when we were 20).

Once the schizo South Carolina weather decides to actually stay warm, it’ll be time to get back out on the boat and enjoy some family time on the lake. I’m getting antsy waiting. In the meantime, I’ve started researching our next trip, although it will be a couple of years before we take another big one. Next stop, Costa Rica! I’m thinking some time in the mountains and some time in Tamarindo…recommendations are welcome.

Focusing on the fun we’ll have this spring and summer and the next trip we hope to take will help us get through the most recent hiccup with my health. My Myeloma numbers have been slowly creeping up since January, so my doctor at home thought it might be best to move up my restaging appointment at Emory from May to next week. Restaging is when I get my annual bone marrow biopsy and bone density scan to check the status of the Myeloma. My bone density scan will have to be put off for the time being, however, as we’ve had to replace that appointment with another biopsy.

The second biopsy will be of a mass that was found during an MRI I had on the 13th. It’s located behind my right eye, which has been a bit swollen for the past month and a half. I thought my good old pirate eye (this is what it was affectionately named by my friends when I was younger, as it gets smaller when I’m under the influence) was making an appearance because my sinuses have been disturbed since having the flu at the beginning of February and then going directly into pollen season. My self-diagnosis was a bit off. The doctor suspects it’s Myeloma (and not some other type of cancer), but obviously we have to run some more tests. So I had a PET scan the morning of the 17th and will have the bone marrow biopsy and biopsy of the orbital mass the 21st. I told John the other night I don’t do anything half-assed, so if I’m going to have cancer I might as well go full throttle and get myself a tumor while I’m at it.

Bottom line: it’s totally treatable. As of now, I know the plan is to attack the mass with localized radiation and switch up my chemo. I don’t know how many radiation treatments I’ll have to have nor the frequency, and I don’t yet know what the plan is for my new chemo cocktail. What I do know is that I have excellent oncologists, so I’ll be fine.

I’ll continue to take this ride as long as I am able, seeing as much as I can while I’m here and making lasting memories with my family. If this forced conscious expansion has tuned me in at all, it’s to the fact that talking about something doesn’t mean shit unless you actually follow through with it. So I’m done talking. I’m ready to do. There won’t always be time.

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Cancer, Maintenance Therapy, Multiple Myeloma, Multiple Myeloma in your 30s, Relapsed Multiple Myeloma, RVD

Reboot…

It’s not what I wanted to hear…they found cancerous cells in my bone marrow biopsy results. I sat there and calmly absorbed the news because I knew freaking out at that moment would do nothing for me. Part of me was in shock because I don’t feel like I’m getting sick. But I didn’t even know I was sick last year until I was really sick, and that’s just the nature of this sneaky disease. Left to my own devices, I’d likely push myself right back into the hospital, unaware of what’s going on inside my body. The past few weeks have come with some setbacks and challenges, but I am staying hopeful that all will turn out okay.

I went back to Emory May 10th for my year post transplant bone marrow biopsy, axial skeletal scan and bone density scan and then returned on the 24th for my results. The bone scans came back without problems, so that is good news; however, my biopsy did not return the results for which I was hoping. They found a chromosomal abnormality – the same one that resulted in my stage 3, high risk diagnosis last year (t4:14). They told me the plan is to do two cycles of more intensive therapy followed by some more intensive maintenance than what I have been doing. I’ll be going back to RVD (Revlimid, Velcade and Dexamethasone), which gave me very favorable results last year. Previously my maintenance consisted of Velcade only, so we’re ramping things up a bit. I’ll be on higher doses of everything for the first couple of cycles, and then we’ll scale the dosage down for maintenance.

I was feeling okay about all of this until I received a call from my doctor here in Columbia on the 25th (the day after hearing my results at Emory) stating that the blood tests performed at SCOA on the 23rd looked much worse than what Emory had used from the 10th. My MSpike went from .1 to .7 in two weeks, and this is a sign the disease is progressing very quickly, which is the nature of my particular diagnosis. The moment I received that call was the moment everything sunk in for me – here we go again. Thankfully I am monitored closely and this has all been caught early, before the disease has had time to do too much damage. The doctors still believe they can get this resolved with two cycles of more intensive therapy, so that is what we are starting with. If I need more after we assess blood work, we’ll do more.

I’ve traipsed through the myriad of emotions I imagine come with hearing your cancer is back after only a year post transplant, just 9 months since receiving word you achieved remission. Devastation, anger, disbelief. I’ve made my way to acceptance because feeling sorry for myself, getting pissed and acting like this isn’t happening aren’t realistic ways of attacking this situation. Even after hearing I achieved remission I knew the chance of recurrence was very high, so I prepared myself the best I could for the chance of hearing the news, but of course I hoped it wouldn’t happen this quickly. Now that the circumstance has presented itself, although my diagnosis is not as bad at this point as it was last year, the news has hit me a little harder than it did last January after my initial diagnosis. Maybe it’s because I’ve had so long to let the reality of all of this really sink in. Last year I didn’t have time to think about anything before starting treatments and preparing for my transplant. Now I have taken back as much of my life as possible only to have that compromised again, and it has taken me some time to accept that fate. I think it’s understandable and normal in this situation, though.

This isn’t just happening to me, though; it’s happening to everyone who cares about me and I know it’s hard for them, too. I sit here and wonder whether it’s harder for me to actually have to go through this or if it’s harder for the people who love me to have to watch me go through this. I don’t have much control over what happens to me. I can choose to stand up and fight my ass off and refuse anything but positive results. I have that much control over my situation. But the people around me have no control, and I imagine it leaves them feeling pretty helpless. No one can change what’s happening to me, but the people in my life do a really good job of making me happy regardless of my situation. I’m lucky to be surrounded by such amazing people, whether it’s family, friends or coworkers. They help me remember that while the whole cancer thing sucks, I have much more positive areas to focus my attention.

So rather than dwell on the negative, I’m doing my best to focus on the good parts of my life. I’m not ignoring what is going on (it’s kind of hard to ignore when you have to go to the oncologist no less than twice a week and fill your body with poison to hopefully get better), but I’m doing my best not to dwell on the shitty parts of life right now. Because I do have so much to be happy about.

I’ve been enjoying some wonderful time on the lake with my family. My husband sold one of his motorcycles to buy a boat and I must say it’s been a wise investment. A pontoon is definitely more family friendly than a motorcycle (let’s don’t get too bummed for him – he still has two left in his brood). A little lake therapy is definitely helping my mood. We spent Memorial Day weekend at the lake with my family and it was filled with a lot of relaxation and laughter (brought on mostly by adult time playing Cards Against Humanity). It was exactly what we all needed.

My daughter is 2 1/2 now, and she’s so much fun. Watching her imagination at work and personality grow each day truly astounds me. The stuff that comes out of her mouth keeps me laughing, although I REALLY have to watch what I say around her these days. Her selective hearing seems to only allow her to hear, absorb and repeat the particularly bad things I say. Shit and fuck happen to be two of my favorite words, so I’m trying hard to get my ass in gear. The steroids I’m taking don’t aid my efforts. At all. This is also why you’ll rarely, if ever, see me drink in front of my child. Two drinks in and I start using “fuck” like a comma.

What I’m most looking forward to this summer is a trip my husband and I are taking to St. Lucia (all that lake time will help me work on my base tan before this trip – I’m not trying to get burned and add Melanoma to my list of cancers). My doctors are working my chemo schedule around my trip, so I should be in good shape for it. We leave in a little over five weeks, and I get more excited as each day passes. I planned this trip last year as I sat in the chemo room for hours at a time to give me a positive focus and something to look forward to in the coming year. Since I had the time on my hands to actually do some proper planning, we’re not going the all-inclusive route for this trip. I’m looking forward to doing a lot of exploring while we’re there. I had hoped we’d be able to use this trip to celebrate a year cancer free, but instead we’ll just use it to celebrate life in general and further our appreciation of the beauty the world has to offer. I’m looking forward to hiking the rainforest and the Pitons, taking a sail, lounging on the beach, and enjoying the stunning views from our villa for the week.

The whole cancer thing has really put mortality into perspective for me. I don’t know if I’ll be here for 2 more years or 50, and if cancer will be my demise – who knows? I do know that I’m going to make the most of the time I do have because I am in complete control of how I choose to live my life while I’m here. I don’t have time to sulk about my situation. I have to move on, continue living my life and making memories with the people I love while I can. I know I’ll have bad days; everyone has bad days, regardless of their personal situation. It’s my responsibility to move past the bad and soak in all the good. That, I can control.

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