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, Maintenance Therapy, Multiple Myeloma, Multiple Myeloma in your 30s, Radiation

I’ma Keep Running ‘Cause a Winner Don’t Quit on Themselves

Many of my blog titles are derived from song lyrics. Music is so important to me, and when I can’t find the words to express how I’m feeling there is often a song that does it for me. Some people may recognize the lyrics I choose, some may not.

This particular title is from the lyrics of “Freedom” off of Lemonade by Beyoncé. My close friends know I haven’t cared for Beyoncé since she split from Destiny’s Child, and I likely only enjoyed their music because Timbaland had his hand in some of it. Something about Beyoncé’s voice typically makes me cringe (I may have used the word “hate” to describe my feelings for it in the past), and I just haven’t felt the emotion behind her singing. Until now. I realize I’m really late to the Lemonade train, and I haven’t quite hopped on; I’m chasing after it, just out of reach. But there are several songs on this album that are undeniably great (“All Night” is another I have on repeat at the moment).

I am not lost on the meaning behind “Freedom” as I understand it is more about the Black Lives Matter movement. I can’t claim to understand what it feels like to be a person of a different race, historically chained by oppression and afraid of authority. I do understand feeling chained by and afraid of something else though. And as the cliché states, cancer doesn’t discriminate. I am living proof of this statement, as the demographic most diagnosed with Myeloma is old, African-American males. Last I checked, I am none of those things (but please correct me if I have missed something).

A lot of people tell me they admire my strength for maintaining some semblance of a life with everything else I have going on. They apologize for what I’m going through and say they couldn’t handle it like I do. I appreciate the sentiment, but I’m just doing what I have to do to survive. I know there are people out there who would crumble in a corner, their lives wilting away as they feel sorry for themselves. I am not one of those people and I have the people in my life to thank for that. I am strong because of them – because of the people who tell me they don’t know how I do it. It is true I don’t have the freedom to do everything I’d like to, but I try to maintain the most normal life I can. I break the proverbial chains; I appreciate things in a way that anyone who hasn’t had this experience can’t and I REFUSE to give up. I may have been a stubborn child, and I’m still a stubborn adult, but it’s finally paying off (I remind myself of this when my own child is displaying stubborn behavior – she will be a leader one day; she will do amazing things – this is my mantra).

People must also realize that I am not always strong. Sometimes I need other people to be strong for me when I have a moment of feeling sad or sorry that this is happening to me. These moments are fleeting, but they happen. I am not always happy, but neither is anyone else on the planet, no matter their circumstances. And of course I have my moments of roid rage brought on by the almighty Decadron. This shit is no joke and I’m no joke when I’m on it. I’m up, I’m jolted and I can strike at any moment without warning. I can actually see myself acting crazy and I have no control over it. That sounds like a total cop-out – an idiotic excuse to act like a bitch, but this is so much different. Anyone who has taken strong steroids knows what I’m talking about. I need to be more dedicated to Yoga at this point, because they just increased my dose of steroids from 20mg per week to 100mg. Woo!

I am finally healing well after the biopsy of the tumor behind my right eye two weeks ago. Most of the bruising is gone and the swelling has gone down immensely. I was a bit shocked by my appearance afterward, as the nurses DID NOT AT ALL prepare me for what to expect following the surgery, although I inquired more than once. I literally looked like I ran into Mike Tyson’s fist:

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My eye is not just closed in this picture; it is swollen shut. This was the day after my surgery, right after having an ice pack on my eye for about an hour (hence the red cheek). My dumbass was sitting in the OR prep station asking the assistant surgeon about wearing makeup to a wedding that Saturday. May I point out that had I known my eye was going to look like this I would not have been as concerned about my ability to wear mascara or false eyelashes because I look sleepy without eye makeup on? Just saying. He just said to look tired. The proper response would have been laughing hysterically at me in my face and telling me there’s no way I’ll be able to wear makeup because I’ll have a black eye that I won’t be able to open for a week. I did not attend said wedding three days after the surgery.

The surgery did not come without its hiccups. That morning the doctor and I discussed using dissolvable stitches so I didn’t have to drive a total of seven hours just to have stitches taken out. Following the surgery, the assistant surgeon started asking me about making an appointment to come back to get my stitches taken out.

“Woah, woah,” I said. “Dr. Hayek said he was going to put in dissolvable stitches so I don’t have to drive all the way back here to get them taken out!”

“Oh…well, we didn’t put in the dissolvable ones. We’ll have to take these out and re-stitch you right here,” he explained.

“Well, it feels like I’m still numb, so go ahead and do your thing. This can’t be any worse than having stitches following the birth of my child after a little tearing and subsequent episiotomy when the epidural didn’t take as well as they hoped.” The people in the area had a nice laugh over that statement. My birth story is a different one of frustration (although totally worth the frustration).

I closed my left eye (my right was already closed from the increasing swelling) and he began taking out the stitches. All of the sudden I could tell he had them out because everything got a little brighter on the right side, although I still couldn’t see anything. He stitched me back up in minutes and I was good to put some ice on it while I waited for the drugs to wear off.

John came back to my area while I recovered and let me know the doctor told him that I should expect some numbness on my head following the surgery, as the tumor was sitting up against the nerve that controls my forehead. How long it would last, he couldn’t tell me. The right side of my head is numb from the top part of my eyelid all the way back to the crown. When I get an itch in this area and attempt to scratch it, nothing happens. It feels like I’m washing a wig when I wash my hair. I’m slowly getting used to the sensation (or lack thereof), but this would have been another nice-to-know fact BEFORE the surgery. I spoke with the doctor a week post-op, and he said that I will get sensation back anytime between a month or six post-op. Because I’m already beginning to feel some pain around the edges of the numb area, he said I am progressing quickly and it will likely be closer to a month for me.

While I was in recovery I was in a lot of pain, so the nurse (who was not at all friendly) gave me some Fentanyl. And then she gave me some more. And then she gave me a Lortab. I would like to point out that I had not had anything to eat for about 15 hours prior to this moment, so all of the pain meds made me feel pretty sick. The nurse wouldn’t give me any anti-nausea meds, but instead handed me some graham crackers. Gee, thanks. Tell me again how I’m supposed to swallow food when I feel like I’m going to hurl? Tell me again how I’m not supposed to be scared shitless of puking when I’ve just been told the pressure caused by throwing up, sneezing or coughing could cause my eyeball to come flying out of the socket? Just wondering. I chewed one bite of the crackers for over a minute and forced myself to swallow. That’s all I could handle.

I got out of surgery just before 1:00 p.m. and was wheeled to a consult with Radiation Oncology for a 2:00 appointment. This appointment was added on at the last minute, so it’s all I could get. I’m not happy when someone wakes me up on a normal day; it takes me a little while to become approachable in the morning or after naps. Waking up out of anesthesia and feeling like shit because a doctor just removed half of my eyelid, took out my eyeball, scraped around behind it and then put everything back into place are not the elements that make for a happy awakening. Let’s just say I was not in a good mood. Bitchy Anne was in full force.

I was meeting with the Radiation Oncologist at Emory because it had been suggested I do my radiation there. Dr. Lonial was a little concerned about me receiving radiation on my head and wanted to ensure I receive treatment with the latest technology. Thankfully after talking to the folks at Emory they concluded I can do my radiation at home (it’s not like I go to some backwoods facility in Columbia). The conversation that led up to this point was annoying, although I laugh thinking back on it now.

“It doesn’t look from the scans that the tumor is against any nerves,” the Radiation Oncologist explained to me before I interrupted.

“Well, the Ophthalmologist just cut me open and didn’t remove it all because he said it was up against the nerve that controls my forehead, so I’m pretty sure it’s up against a nerve,” I told her, attempting to hold back my bitch tone, but not succeeding.

“Oh. Okay. Well it doesn’t look like the tumor was there in the CT scan performed by Emory last May,” she continued.

My husband chimed in, likely in an attempt to keep me from biting off the woman’s head, “The Ophthalmologist told me he looked at the CT scan from last year and he saw the tumor on the scan,” he told her, not quite as meanly as I would have.

“Oh, I see. Well, that’s his specialty, so I guess he can spot something like that better than I can.”

Okay woman, whatever. The Radiation Oncologist and her Fellow proceeded to talk to me about having a mesh mask made for radiation treatment. They asked me if I was this swollen prior to the surgery. I wanted to say, “No you fucking dumbasses, I was not. I just had my face cut open and my eyeball and part of a tumor removed. NO I WAS NOT THIS SWOLLEN BEFORE! HAVE YOU NOT NOTICED MY EYE HAS GROWN IN THE PAST FIVE MINUTES WHILE WE HAVE BEEN TALKING?!” A simple “no” sufficed.

They concluded I shouldn’t have a mask made that day – we should wait for the swelling to go down. Well look at the brains on Brad! How many years of med school did it take for you to be smart enough to come to this educated decision? Finally they stated the treatment should be straightforward and they see no reason I shouldn’t be able to get the treatment at home at SCOA. Praise Jesus. Let’s go home. Likely they just didn’t want to deal with my bitchy ass any longer than they had to.

The following week I had an appointment with my Oncologist at SCOA where we talked about the care plan my doctor at Emory put together for me. Because my bone marrow biopsy results came back with less than 5% plasma cells in the marrow, they still consider me to be clean, and I can remain on maintenance levels of chemo. I am switching to a newer chemo pill, similar to what I was on previously, but more potent. It is still a derivative of Thalidomide, so regular pregnancy tests are required so I don’t get pregnant with any mutant babies (I’d be shocked if I was at all fertile after all of these chemo treatments anyway). The pill is called Pomalyst and I take it for 21 days rather than 14 like my previous pill. I will also receive infusions of a newer immunotherapy called Darzalex, and I get to take a shit ton more steroids than I was on previously. I’m going to be such a peach! I think the doctors are trying to make my husband divorce me.

I had another appointment with the Radiation Oncologist at SCOA later in the week, and he assured me they have the latest technology as they updated all of their equipment in the past year. I have nothing to worry about. I will get 10 radiation treatments, which will take two weeks to complete. The biopsy results came back as a plasmacytoma, just as the doctors suspected it would. This is good news in that there is no other cancer causing the tumor. Plasmacytomas also respond very well to radiation, so this is easily treatable. I mentioned my waste of a copay consultation with the Radiation Oncologist at Emory and the doctor laughed, stating he’s never seen a patient that close following a surgery. It just didn’t make much sense. Yeah, buddy, I agree.

I started both of the chemo treatments this week. The pill is easy enough, but the infusion is a little more intense. I arrived at the doctor at 7:30 this morning to start my infusion. After the pre-meds of steroids, they start the infusion (1000ml total) very slowly at 50ml an hour, increasing by 50ml an hour each hour until they get up to 200ml per hour. I was at 100ml per hour for 55 minutes before I started having a reaction and they had to stop to give me Benadryl. My head became congested out of nowhere and it was so bad within minutes I had to start breathing through my mouth. No matter how much I blew my nose, the congestion kept coming back immediately. I started to develop a sore throat and I was coughing and sneezing, so they waited an hour to start the infusion back at 50ml an hour, allowing the Benadryl to do its thing. Luckily I wasn’t wheezing and my throat didn’t close up, which are possible side effects. I spoke up quickly enough when the congestion started to become a problem, before it had a chance to escalate. I was able to increase up to 200ml an hour eventually and finished the infusion a little after 6:30 p.m. I at least have remote access to my work desktop, so I was able to work while I was in the chair. Then I could work on my blog after I was finished working at 4:30. So I had a productive day, nonetheless.

I go back Thursday to have my mesh mask fitted for my radiation treatments and I’ll get my schedule made for those. Since I’ll be doing chemo and radiation at the same time, I will work from home those two weeks. I just don’t know how my body is going to respond to all of this, but at least it is short-term.

Through all of this mess, I refuse to quit. I refuse to stop trying – to stop living a life I can be proud of. I don’t think I’m extraordinary for feeling this way; I expect no less from myself. I’ve talked to the doctors about plans B and C if the current plan doesn’t work for me (CAR T Cell Therapy and/or an Allogeneic Stem Cell Transplant with my brother as the donor have been mentioned as back-up plans) and I am hopeful that I have several options to keep me around for the long haul. Cancer can’t get rid of me this easily. I never give up without a fight. Trust me, you don’t want to fight with me and neither should cancer.

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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.

Standard
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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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s

We’ll All Float On Okay

In December when my doctor told me about the abnormalities in my blood work, I didn’t immediately have a reaction to the news. I stayed numb for a few days, and then as the two weeks passed between my appointment in Columbia and my impending appointment at Emory, I grew increasingly anxious.

I started thinking about what might happen if the cancer was already coming back, which led me to think maybe I’ll never really be better, and eventually my thoughts became pretty grim. I started to wonder if I’d die before Olivia could really remember me or know how much I love her. I know that’s morbid, but I feel like if I’m writing about my experience, I need to be honest with people about it.  I try to stay as positive as I can, but in some situations it is impossible to stay positive 100 percent of the time. I don’t spend much time dwelling on the negative because that won’t benefit me at all, but I do have that occasional negative thought. That’s reality.

I found a little solace when, after some strategic Googling, I stumbled across an article in the Myeloma Beacon from 2013 about an M spike following transplants actually being a good sign. Research has shown a correlation of longer remission periods/survival rates if the new spike is different than the original. Typically most information I find on the internet is troubling, so it was nice to see that there was a possibility of good news.

Lucky for me, I received positive news during my appointment on the 22nd. The doctor is of the impression that the spike seen in my blood work is actually production of healthy cells. Emory had blood work from the week before this M spike appeared and the doctor said they saw absolutely nothing troubling. It took a few days for them to run labs on the blood work from my most recent visit, but they didn’t find any cause for concern. When blood work was run at my doctor in Columbia the week following my Emory appointment, my M spike came back negative. So all is well for now!

Fast forward to January…the 17th marked a year since my initial diagnosis. My emotions have been all over the place lately, thinking about where I was a year ago compared to where I am now. As John and I rode home from an overnight trip to Charlotte on the 17th, I realized it had been a year to the day since I was first admitted to the hospital, almost down to the hour that I had realized they admitted me to the oncology floor.

All sorts of emotions rushed over me as I thought about how I felt at that moment last year compared to how happy I had been that weekend. I wanted to scream, cry and laugh all at the same time. It’s hard to explain the way one night away in a perfect bed and breakfast feels when you’re with your favorite person in the entire world, you have an amazing dinner out, and you get to hang out with some truly fun people. It’s different than it was before. The weekend was perfection (minus the rude Panthers fan who got all up in my face flipping me off with both hands simply because I was walking to my seat in the stadium – classless asshole).

Tuesday the 19th marked a year since my first bone marrow biopsy, and Thursday the 21st marked a year since my initial diagnosis. I’ve come a long way since then, and I’m changed forever, whether I like it or not. Some of the change has been positive. I’m humbled and grateful to be here every day and to be able to spend time with friends and family. I should have felt this way prior to this ordeal, and maybe I thought I felt that way previously, but in reality I did not.

I’ve changed positively in other ways, too. Before I got sick, I never looked at myself in the mirror and felt like I was that pretty. I didn’t think I was ugly, but I never thought I was anything that special. Cute – okay. But beautiful? No. That’s a personal problem that I should have overcome long ago. So when I lost my hair this past summer, I was forced to look at myself – REALLY look at myself – both physically and emotionally. I finally grasped that beauty is made of so many things. Not to say I didn’t know this, I just hadn’t fully comprehended it in the past. Beauty is physical, no doubt. But it’s also strength, courage, humility and so much more.

I gained some newfound self-esteem the first time I looked in the mirror after all of my hair had fallen out. I wanted to put on some makeup because I knew it would make me feel somewhat normal, and I looked at myself so closely in that moment (I get really close to the mirror to put on eyeliner) and realized that I’m beautiful. I felt a little sad that I wasn’t exactly conscious of this before. My husband tells me that I finally see in myself what he’s always known about me. It doesn’t hurt that I have a very nicely shaped head, so my baldness wasn’t too offensive. The first comments out of both my husband’s and brother’s mouths when they first saw me were regarding my nice, round head.

While I’m talking about how beautiful I am, I will mention that many people have complimented me on my glowing skin lately. Now, I realize that when I was sick my face lacked any sort of color; that’s what happens when your hemoglobin hangs out between 7 and 8 on the reg. Now that I’m back up to almost normal blood levels, I have a nice, rosy glow. I also have the clearest skin I’ve ever had in my life. I attribute this to chemo drying out my normally oily face. I counterbalance the dryness with a little moisturizing after I wash (I use nothing fancier than Neutrogena) and a lot of water intake (I have to drink the water for my kidney function, anyway).

So I’ve found the secret to beautiful skin, and it’s not Rodan + Fields. It’s a combination of chemo, Neutrogena and about 100 ounces of water a day. Turns out the chemo makes the regimen kind of expensive, so go ahead and stick to Rodan + Fields if that’s your thing because it’s probably cheaper. But Proactiv never made my skin look this good.

Getting back to emotional changes, I now appreciate the smallest things I sometimes took for granted in the past; but with the positive change also comes the anxiety of not knowing if or when I will get sick again. I try not to think about it often, but it’s a reality I can’t ignore. I know what happened in December will likely happen again, and there is a chance I will get bad news at some point. I have to be prepared for these things to occur, but I make a concerted effort not to focus on it.  Focusing on it will only harm me in the long run.

I’d rather live my life while I can rather than worry myself to the grave. It’s not like I’m spending my days dancing with leprechauns under rainbows, but the Grim Reaper isn’t hanging out on my shoulder either. I’ll admit that sometimes I need a reminder to get my head out of my ass. You can usually find me listening to “Float On” by Modest Mouse on repeat when I need a reminder that life will go on regardless of the bad shit that might happen along the way…“Bad news comes, don’t you worry even when it lands / Good news will work its way to all them plans.” I will find balance in my life.

The biggest change for me has been the general reprioritization of my life. John and I are no longer putting things off because we’ll have time. The truth is, whether it’s because of cancer or something else, we may not have time to do the things we want. If I feel like I need to change something in my life, I’m going to do what is in my power to change it. If we want to take a trip and make some memories, we are going to do it now, damn it.

This is all within reason, mind you. Ideally we would have won a billion dollars in the lottery, quit our jobs, and traveled the world while homeschooling Olivia and exposing her to many different cultures. Plus, with the way the candidates look for the 2016 election on both sides, it may be a good time to pack up and ship out. But alas, we only won $7.00. So we’ll be doing what we can within our means to make sure we have the best time we can and give our daughter the best life we can while we’re here.

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Post Stem Cell Transplant

What a Difference a Day (or 100) Makes

My 100 day post-transplant appointment at Emory was last month. So much happened to me physically in those 100 days, but looking back it doesn’t seem like it has been that long since my 17 day vacation at Hotel Emory. For the most expensive vacation I’m ever likely to take, I really think the food could have been better. I realize it was all inclusive and you just can’t hold the food to a high standard, but it was really awful in these particular accommodations. At least my room had the best view on the floor.

Since I last wrote, I made it through my first several rounds of maintenance therapy. The people around me only narrowly survived my first two rounds, however. I was receiving two shots of Velcade per week, was on more than twice the dose of Revlimid I took in the spring, and I was taking twice as many steroids. Conclusions from those two cycles of chemo: steroids are the devil and ‘roid rage is real. Steroids make me feel like I’m floating outside of my body, watching someone I have no control over. I knew I was acting completely crazy but there was absolutely nothing I could do to change it. Also, I couldn’t stop eating so I gained about 15lbs over that six week period. Yay. Thankfully, I am now down to only one shot of Velcade a week and I am off the ‘roids and the Revlimid.

My appointment at Emory went well. I received a straight answer from the doctor regarding how long I’ll have to continue maintenance therapy. The Nurse Practitioner just told me last time I was there that I’d be on maintenance until I can’t tolerate it any longer. I told the doctor I needed a real answer to my question and he told me I’d continue with maintenance for three years.

I have to say this wasn’t exactly what I wanted to hear, but it is what I have to do, so I’m trying not to dwell on it. The stressful part is not that I have to go to the doctor every week for three years. The stressful part is the fact that Velcade is a tier six drug. That’s the highest tier, which means it’s the most expensive. Proving to be consistent at every aspect of life, I not only have expensive taste in shoes, cars and food, but I have expensive taste in cancer as well.

The doctor told me a generic for Velcade should be available in a little over a year. John did some research on this, and apparently a generic has been available in the EU since 2004. Really? REALLY?! Apparently Myeloma is a $6 billion industry for drug companies. That’s a lot of money for a cancer that affects less than 1% of the population. I’ll just roll my eyes and move on because getting off on that tangent will turn this blog into a novel. I realize they need to cover cost of research, but good lord.

The doctor also said that they are coming out with a Velcade pill soon. It is currently in clinical trials and they are seeing good results with it. Hopefully they will approve the pill for maintenance therapy and I will be able to take it, should I continue on Velcade. This could save me several trips to the doctor per chemo cycle, and it would give my stomach a reprieve from these really painful shots. I’m not just being a baby, either. My stomach is torn up from these shots (I bruise as a result a lot of the time), and it hurts to wear anything on my bottom half that doesn’t have some sort of stretchy waist (this just gives me even more of an excuse to wear leggings and yoga pants constantly). But things could be so much worse. I see people every week while I’m waiting for my shot who are in much worse shape than I am, so I am grateful that I am as well as I am.

Some of my recent labs have come back slightly abnormal, though. Yesterday I went to the doctor and I have an M Spike of .1, which is a spike of monoclonal protein (these are malignant cells that we want to get rid of). The level isn’t high; as a comparison, my M Spike was .6 when I was diagnosed. However, we really want the level to be zero, so my doctor in Columbia wants me to go back to Emory this month to see if my doctor there wants to change my maintenance therapy. We may switch drugs completely or just add something to what I’m currently taking. We shall see. I’m just thankful I’m monitored closely so we can catch these things and handle them before they spiral out of control. So, back to Emory I go on the 22nd. At least I’ll get to hit up General Muir while I’m there!

One final thought…I’ve been reflecting a lot on this past year lately, and it becomes more evident every day how lucky I am to have such a supportive husband. I knew I was lucky before all of this happened, but the way I appreciate things now is so much different. I can’t imagine what life would have been like over the past year had I not been with someone as amazing as he is. I would have been dealing with cancer and a divorce. He has seen me at my absolute lowest, most unattractive points, and he still finds me beautiful through it all. He also knows how to make me laugh exactly when it’s needed to help me get through a heavy moment. John is one of the most incredible people I know and I owe a lot of my badassery (yes, that’s a made up word) to his support.

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Post Stem Cell Transplant

Things Are What You Make of Them

I had my 60 day post transplant follow up appointment at Emory at the end of July. While there, I underwent my third bone marrow biopsy and had countless vials of blood drawn so they could tell me how I responded to the stem cell transplant I received this past May. It takes two weeks to process the results, so after two weeks of terrible sleep, John and I went back to get the results (bring on the anxiety dreams – I still have that dream I show up for class at the end of the semester after never having gone to the class and it’s the day of the final exam, even though I’ve been out of college 10 years and final exams have nothing to do with what I’m anxious about).

All of the test results came back negative (which is a good thing). No chromosomal abnormalities or indications of Myeloma anywhere! There was still a small trace of bad protein in my blood, but we were told this is just residual and will eliminate completely over time.

The nurse practitioner talked to us about the results prior to the doctor coming in. I knew I had stage 3, high risk Multiple Myeloma going into the transplant. I knew I had chromosomal abnormalities that indicated my high risk categorization and I know what translocation means, but I’ll honestly say whenever a doctor gets too scientific my eyes glaze over and I stop paying attention. The only sciences I excelled at in school were those of the social variety. Anyway, the NP  told me to picture a chromosome (I at least remember from high school biology what a chromosome looks like). He said my abnormality was that one of the arms of chromosome 4 had swapped with one of the arms of chromosome 14. Thanks for bringing it down to a Sesame Street level for me! Now I get what t(4;14) means on my initial biopsy report, beyond it meaning I had a more unfavorable diagnosis than many others.

He later explained what my maintenance therapy would consist of. I will have two cycles of Revlimid, Velcade and Dexamethasone (a steroid), or what my doctor calls RVD. I had two cycles of this concoction prior to my transplant, after the second change to my chemo regimen. I had very favorable results once I was put on this combination of drugs. The cycles will be two weeks on and one week off. Following those two cycles, I will cut back to Velcade only, three weeks on and one week off, until my body (or my wallet – whichever gives out first) can’t tolerate it any longer. So I basically have no idea how long that will be.

Revlimid, or lenalidomide, is a derivative of thalidomide and has some serious possible side effects. Not that most chemo drugs don’t, but it is a pill I have to order from a specialty pharmacy that I really hate even having in my house, so I’m glad my maintenance will only consist of two cycles of it. I don’t really dig on the stress of having chemo drugs in my medicine cabinet, plus the process of getting a refill is completely annoying (pregnancy test, internet survey and over the phone counseling each time), so not having to go through that every month until I’m 70 is a relief (yes, they make every female under 70 take a pregnancy test – wtf?). They don’t want me having any babies with fingers for arms, although I’d be shocked if I was actually fertile anymore after the dose of Melphalan they gave me before my transplant.

They give Velcade to me in shot form in my stomach. I remember it as one of the more painful shots I’ve had to endure, but I started the shots again today and it was not nearly as painful as I remember. I can either attribute it to feeling better in general, or I can attribute it to developing a higher tolerance for pain and general bullshit through the transplant experience. Either way, I’d rather get a shot than have to sit there for four hours while chemo slowly drips into me via infusion. Velcade is proven to be the most effective drug at fighting my particular chromosomal abnormality, which is why they have selected it for my maintenance.

The entire purpose of maintenance is to keep me in remission longer. With MM, you are not in the clear if you stay in remission five or even ten years. It has been described to me as being more like a chronic disease because it can come back at any time.

It’s hard to know what to expect because doctors tell me not to pay attention to research statistics as I don’t fall into the “normal” range of people who have this disease. There isn’t any clinical research published (that I can find) regarding the survival rate of women in their 30’s in remission who were diagnosed with high risk MM. I’ve read about the chance of relapse with a t(4;14) abnormality, and even with a complete response the research states it’s almost inevitable. But again, I’m not supposed to pay attention to any of that because most people diagnosed with MM are over 65. I need to stay off the internet. Google is not my friend.

My oncologist at Emory tells me he’s following a treatment path to ensure I live the life I want to live, which for me would involve meeting grandchildren, so he best get me another 40 years (keeping my fingers crossed John and I do a good job parenting and I don’t meet my first grandchild in like 15 years). If that’s what I want, that’s what he’s striving for, although I suppose I have to do a little work along the way, too. I’m going to lean towards trusting Dr. Lonial since he’s the one who is world renowned for his work with MM. He’s smart enough that I’d blindly follow whatever he tells me. I know I’m in excellent hands with him and I also have an amazing oncologist in Columbia.

If I want to live a life filled with anxiety, I can sit here and worry about my future. I’m making a choice not to do that, or to at least make every effort not to do it. As a planner by nature (and by trade since I work in project management), I typically find it hard not to think about my future. When I don’t have a plan it drives me crazy. Just ask my husband, because this trait of mine drives him crazy (he loves me so much, bless him). I tell him with gusto, “I just like to be prepared!” But with something like this there is no way to prepare yourself. Sure, you can stash away savings, you know…in case shit. But there’s no way to mentally prepare yourself for the shit actually happening.

First, I have to admit that I’m a control freak (check!). Next, I have to come to terms with the fact that I cannot control every aspect of my life all of the time (working on it!). I’ll do my best to live day-by-day and not to live for the future. I’ll immerse myself in exercise to alleviate anxiety. I’ll get my ass outside beyond the pool in my back yard as soon as it’s not 800 degrees with 500% humidity (exercising outside in a hat or head wrap right now isn’t ideal for me – bring on fall weather!). I’ll enjoy my family and friends. That’s my plan. It seems simple enough when I write it.

I am slowly getting back to doing normal things now that my blood work indicates I can do so. Being trapped in the house over the summer was a little harder for me than it was this past winter. Recently I’ve run some errands and gone out to eat a few times, which for most people is just normal, but for me it’s been a treat. John and I actually left the house to go to the lake and socialize with friends a couple weeks ago for the first time since May. Before that it was December, so you could say I’ve been a bit deprived of quasi-public social interaction; it’s an extremely exciting ordeal for me. I didn’t realize how much it helped me mentally until afterward, but I really needed some human interaction outside of my house.

Labor Day weekend we have plans to take Olivia to the beach and I’m beyond excited about that. A trip out of town that doesn’t involve a doctor’s appointment (it’s hard for me to imagine right now)! Fingers crossed for sunny weather because John and I have terrible luck when it comes to beach trips and weather. We’ll make the most of it regardless, and at least I’ll be able to say I’ve been to the lake and the beach this summer. It hasn’t been a total loss.

Next week, if all goes well with the start of my maintenance therapy, my life will become even more normal with my return to the office. I’ve been working from home ever since my diagnosis, so I’m excited to get this part of my life back to normal. I just want to get into my first round of maintenance chemo and see how I react before I go back. Maintenance started today and hopefully I won’t have any major issues. I’m so excited to get back and see the people from work who have been so supportive through this whole ordeal. I’m truly lucky to work with so many amazing people.

On a final note, my hair is starting to grow back. It looks to be the same color as it was previously, and from close inspection in the mirror, I’m pretty sure I have grays where they were before (joy!). Gee, cancer, you couldn’t have done me a solid and gotten rid of my grays? What are you good for (other than helping me lose the rest of that baby weight)? You can still see a lot of my scalp, so for now I’m sticking with the hats and head wraps when I leave the house. I’ll admit that I don’t look that bad bald (I’ve received several comments regarding my nicely shaped head and pretty face), so having to stick with shorter hair for a little while isn’t pissing me off as much as it did at first. Plus it takes a lot less time to shower and get ready when you don’t have to wash and style mounds of thick hair. 🙂

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