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

The Fighter Still Remains

I’ve been home from Emory for about two weeks, and now that I’ve had some time to recuperate, spend some much needed time with my daughter, and get back into the swing of working, I’m ready to talk about my stem cell transplant experience. Overall I did very well, but that doesn’t mean there weren’t some challenges along the way.

I headed to Atlanta Memorial Day weekend, as my pre-admit appointments started that Sunday morning. For the three days prior to hospital admittance, I had to receive injections of a drug called Kepivance. This drug stimulates cell growth in the mouth and helps prevent mouth sores that can occur from the high dose of Melphalan (Chemotherapy) they would be giving me on Wednesday.

In the days leading up to my hospital admittance, my father and I pretty much ate our way through the Decatur and Inman Park areas of Atlanta. I wanted to eat as much good food as possible because I knew eating would become a challenge during my stay in the hospital, but I completely underestimated how challenging it would be. I was so thankful for the binge after tasting the food at the hospital (literally the worst hospital food I’ve ever eaten – I suppose that’s the price you pay for high quality healthcare) and dealing with what I call “Kepivance mouth” in the days that would follow. I’ll explain my mouth issues later.

Saturday night we had some tasty Neapolitan pizza at Fritti. Of course, we hit up General Muir for brunch on Sunday after my appointment at Emory; I seriously can’t get enough of this place (I’ve now eaten breakfast, brunch, lunch and dinner there). I had a cracked pepper and Gruyere biscuit covered in pastrami gravy and pink eyed peas. It was delicious. We also scored a chocolate babka from the bakery, which was insanely good. It’s obvious they use high quality, dark chocolate (I am a chocolate fiend). You have to get there early in order to get one because they sell out fast.

Later that day we went to the Krog Street Market and I had some of the best Kung Pao Chicken I’ve ever eaten. It had the perfect amount of spice and garlic. Unfortunately, Columbia doesn’t have much to offer in the way of Chinese food. We have Miyo’s restaurants all over town, which are about the best Chinese restaurants in Columbia (better than PF Chang’s, at least), but Miyo’s isn’t this good.

Monday night, we had reservations at The Iberian Pig. This Spanish tapas restaurant is top notch, and it has one of the coolest ambiances of any restaurant I’ve visited – dark wood, Edison lights – totally my style. We split a couple cheese trays, a meat tray and some pork cheek tacos. I did have an unfortunate incident involving some truffled honey in that I ingested some, but it didn’t ruin my evening. I did have to get a new fork, though, as the flavor wouldn’t come off. I am a fan of most mushrooms, but I can’t stand truffles. Personally, I don’t get why anyone “loves” truffles. I’m of the mindset that people only like them because they are expensive and they think they are supposed to like them. Let’s get real – truffles taste like ass. I almost vomit every time I try something with truffle in it.

Tuesday, my dad headed home after my morning Kepivance appointment and my husband, John, arrived in Atlanta. When he first saw me, John immediately noticed my face was completely red. The redness and irritation was not limited to my face, however. I did some research earlier in the day because I wasn’t completely sure what was going on, and apparently Kepivance can irritate certain parts of your body. Most of the irritated areas basically felt sunburned. A month later, I still have some darker than normal sections of skin due to this side effect. Luckily my face and a couple other areas cleared up quickly.

I attempted to cover my red face with some makeup, and John and I headed to dinner at Cakes and Ale where we indulged in some really magnificent food. We split a crab cake appetizer that was SO good. The crab cake had very little filler and I even ate the peas that came with it (they were crunchy and so sweet), and I usually hate peas. For dinner I had a whole roasted trout with bacon aioli. They brought out the fish whole and de-boned it at the table. John had a ribeye cap, which is the top part of the ribeye that is by far the tastiest, most tender piece of any cut of beef. Both dishes were outstanding. I always get nervous when John orders steak when we’re out because he’s almost never pleased with it. That’s the price you pay for being able to grill a bomb ass steak at home (seriously, I’m so lucky I am married to someone who is such a ninja on the grill).

Seeing as how you can’t skip dessert at a place called Cakes and Ale, John finished his meal with a piece of strawberry cake and I finished mine with flourless chocolate cake. The desserts at this place are ridiculous (throughout my Emory journey, I’ve eaten dessert here three times). I am on a mission to determine how to get my buttercream as light and fluffy as theirs. When I’m allowed to cook again, of course (I’m not allowed to handle raw food at this point). Although I wanted to do it up right on my last night of “freedom” for a while (3-6 months), I decided to do the responsible thing and not show up to the hospital hungover the next day. I guess that’s what it means to be a grownup.

We did have one final drink at Iberian Pig before heading back to the car because I really wanted John to see the inside of the restaurant. John received a text telling him his parking was about to expire, so he rushed to the car while I settled the tab with the bartender. On the way back to the car, I saw an old Triumph with a sidecar parked outside of Victory Sandwich Bar (another seriously tasty restaurant in Decatur), and I stopped to admire it. I love old motorcycles with sidecars; I can’t help it. When I got to the car and mentioned the bike to John, he told me he swore he saw Alton Brown leaving Victory Sandwich Bar on his BMW (the BMW had been parked right next to the Triumph). I was so pissed I didn’t get to see if it was him because I totally would have dorked out and asked for an autograph. It was just like that time last Summer when John saw Owen Wilson in the bathroom at the Beck show in Asheville (Kristen Wiig and Charlie Day were also trying to blend in at the show). I was so jealous I didn’t get to see him. Lucky for me, before we left the next day we saw him walking down the street with his girlfriend. I got my picture from across the street and was satisfied.

Boom. Owen Wilson (I promise):

On Wednesday we checked out of the hotel and wasted some time at Lennox Square until the hospital was ready to admit me. I figured I’d use the opportunity to buy some much needed scarves and hats for my impending hair loss. We ate lunch and then headed to the hospital to be admitted.

I was pleasantly surprised with my view when I got to my room at the hospital. The room looked out over the Emory track, and in the distance I could see the downtown Atlanta skyline. The entire wall was made up of windows. Apparently I had the best view on the floor because nurses were constantly commenting about it. It was really awesome to watch storms roll in from the distance while I was there.

Once I got settled in, it was time to check my vitals. There was one problem: I had a fever. They use these thermometers they rub from mid forehead to your neck. I was pretty certain my elevated temperature was being caused by my extremely red face. I could feel the heat coming off of it just as it does when skin is sunburned, but the rest of my body (with the exception of a few other irritated areas) felt fine. I finally convinced someone of this, and later that evening we proceeded with the Melphalan infusion. They took some blood for cultures just in case, but they found no infection.

The Melphalan was going to kill off any remaining cancer cells as well as my left over, healthy bone marrow. I was going to be completely wiped out so I could start all over again. It has also wiped out my medical history. I literally have the immune system of a newborn baby. I have to be re-vaccinated for everything starting next May. It’s as if I never had the chicken pox when I was four. I am not immune to any cold. I can’t be around any children who have had live vaccinations, as there is a chance I could contract the disease in the vaccine. Luckily our daughter, Olivia, has had her required live vaccinations. She just can’t get the flu vaccine this year (thankfully she’s not in daycare).

The infusion took about 30 minutes. I was asked to eat ice and popsicles for that 30 minutes and for the two hours following the infusion. In addition to the Kepivance, this would also help against mouth sores by constricting the blood vessels in my mouth. Here are some photos John took of me to document the Melphalan experience:

Before Melphalan:

During Melphalan (me with my ice!):

 After Melphalan (at least he picked a photo from one of my favorite movies):

The Fighter Still Remains

The infusion was complete and the next day was considered a rest day. They require that you get up and walk at least a mile each day while you’re in the hospital for a stem cell transplant. The exercising helps stimulate stem cell growth following the transplant. Lucky for me, the rules were changed the day I was admitted and I was allowed to take my walks outside (in a surgical mask, but what the hell, I was at a hospital) until my white blood cell count got too low for the outdoors to be safe any longer.

White blood cell count is an important indicator of how strong your immune system is, so this is monitored very closely for cancer patients, as many chemotherapy drugs have an adverse effect on blood counts. The drugs stop cells from dividing, especially those that divide quickly, like blood cells. I’ve been dealing with lower than normal white blood cell counts for months now, with the exception of the month I was off of chemo prior to my transplant, but the high dose of Melphalan would eventually cause my count to get down to .01 (super duper low).

So for several days, I was able to enjoy some time outside and stroll around the Emory campus. The time outside definitely helped keep me from getting so stir crazy that I went completely insane, although it didn’t help entirely. When you’re stuck in the hospital for 17 days, you’re bound to get a little depressed and crazy. Thankfully the hospital had a stationary bike on the transplant floor that I was able to use while I was limited to inside activity. I much preferred riding a few miles on the bike each day to circling the floor 21 times to walk a mile. The exercising not only helped me to stimulate stem cell growth, it also helped me feel better physically and mentally. Even if I felt like crap, I forced myself to get up and exercise and it always made me feel better. There was only one day I didn’t feel well enough to get out of bed, but I’ll get to that a bit later.

Friday, May 29th was considered day zero. I was going to have my stem cell transplant this day, a day which also happened to be my husband’s 40th birthday (party on). They consider the transplant to be a new birth, and later that day the nurses on the floor came in to sing me happy birthday restaurant style, complete with balloons and tambourines. I let them know it was actually my husband’s birthday, and that he was now even more guilty of robbing the cradle, as he’s officially 40 years older than I am.

Here are my two favorite nurses, Jenna and Justin, getting me set up for my transplant:

The transplant itself is fairly anticlimactic. It’s just an infusion of the stem cells I donated to myself earlier in the month. It took less than 30 minutes, and that was that. Towards the end, I did have a weird tingling, almost burning sensation in my throat. The nurses told me this was most likely the preservative they put into the stem cells to store them. They said most people complain that it tastes like creamed corn. First of all, it tasted nothing like the creamed corn I’ve ever eaten. Second, creamed corn is delicious, so if it had tasted like it, there would have been no complaining from me. Thankfully Justin had a piece of gum to offer me, and that helped with the strange feeling/taste in my throat.

Once the transplant was complete, I got ready to take a walk outside:
4d9e1-post2btransplant
John told me one night as he was changing the dressing on my trifusion catheter that with my blue hair and a surgical mask on, I looked like a Mortal Kombat character. Being the nerd that I am, I responded by telling him it was one of the nicest things he’d ever said to me. John took this picture of me before I was going to take my walk after my transplant and decided to name my Mortal Kombat character Myeleena (obviously I’m related to Mileena and Kitana).

Over the next few days, I felt okay physically, but the Kepivance mouth really started to kick in. This made eating a real challenge. As mealtime rolled around each day, I became increasingly more anxious. I hated eating at this point, which was really unfortunate considering how much I love to eat on a normal day. The chemo had wiped out all of my taste buds (I could faintly taste sweet flavors) and the Kepivance had created this film in my mouth that made everything feel like a slug or a raw oyster in my mouth (my whole mouth was white). It was really awful. The hospital food was so terrible I couldn’t even deal with it on a good day, but luckily they allowed you to bring in your own food as long as it was in line with a bacteria controlled diet. All I wanted was a salad with raw vegetables because I knew the texture would be crunchy and tolerable, but on a bacteria controlled diet all of your vegetables have to be cooked.

I experimented a lot and found that granola, sweet cereal, pudding and milkshakes were all tolerable. John went to the grocery store and loaded up on cereal (Fruity Pebbles and Cracklin’ Oat Bran were my top requests), and he bought me my own milk so I didn’t have to drink the lukewarm, non organic, disgusting hospital milk. Amazingly,the hospital actually made really good milkshakes, so I ordered a chocolate milkshake with a banana added (so it was at least a little beneficial to my health) on most days.

My taste buds haven’t completely come back yet, but I no longer have a film in my mouth and I can taste much better now than when I was in the hospital. Eating isn’t as stressful; I’m still on a bacteria controlled diet which does limit me a great deal, but I’m dealing with it and eating what I can. I’m looking forward to the day when I can have a thick, juicy, rare to medium rare steak grilled by John Boots himself (picture me drooling Homer Simpson style). For now I’m sticking to meats that aren’t completely ruined when cooked well done. My new mantra: This isn’t permanent. THIS ISN’T PERMANENT!

All I really wanted while I was in the hospital was Korean and Indian food (and Atlanta has plenty of it), but I was trying to keep my diet somewhat mild because I did experience some stomach issues. I’ll spare you the grave details, but I ended up with C. diff. This happens to about 25% of transplant patients, according to the doctors and nurses at Emory.

Everyone has this bacteria (among many others) in their digestive tracts, but when something causes an imbalance, such as a high dose of chemo coupled with several antibiotics, the normally harmless bacteria can grow out of control and cause issues. This experience is what really vindicated my decision to have my stem cell transplant inpatient at Emory rather than outpatient at MUSC, because had this happened to me outside of the hospital, it could have turned into a more severe, even life threatening situation. I would have thought it was just a normal reaction to the chemo and no big deal, but I was monitored so closely in the hospital that I was tested and diagnosed quickly. I was put on another antibiotic immediately and was ordered to wear an awesome yellow paper dress over my clothes and gloves along with my surgical mask every time I left my room. I am happy to report that all is well now.

John stayed with me in the hospital and took care of me until June 5th. He ran back and forth to the grocery store and restaurants, braving Atlanta traffic, getting me food I thought I might be able to stomach. He ran back and forth to the vending machines, using the nickels the change machine had given him for his $5 bills to get me Powerade to keep my electrolytes in check. He bought DVDs and games to keep us occupied (I wish I had known ahead of time that there was a DVD player in the room). He kept me sane when I started losing it because I was stuck in a hospital 3 hours away from my friends and immediate family. For a while, I felt fine physically (minus the C. diff, but it didn’t get me down). I was able to get up and exercise each day and I was starting to wonder if my hair was actually going to start falling out.

John left on the 5th when my mom came to relieve him of his duties. He needed to get home to our daughter and get back to work. When my mom got there, I was still feeling fairly well. The next day, my white blood cells hit the nadir, so there was nowhere to go but up. Or so I thought.

I started having some pain in my throat, which made it hard to swallow. Over the next few days as the pain increased, I wouldn’t even be able to swallow water. I’d suck on ice and let the cool water drip slowly down my throat; that’s about all I could do. As a result, they had to keep me hooked up to fluids 24 hours a day (minus shower time) until I left. I tried several different pain killers until they finally had to put me on a morphine pump. It was the only thing that worked to somewhat dull the pain.

On Sunday, my mother left to run an errand and the doctor who had been on call for the majority of my hospital stay walked out of the hospital with her. He told her he hoped to let me go a couple days early on Wednesday, based on how well I was doing. He also told her he hoped to let me go straight home rather than have me stay in Atlanta for another week or two. He knows my oncologist in Columbia well, and he felt completely comfortable with him providing my follow up care. When I heard this news I got so excited!

Fast forward to Monday night, and all of the sudden I start running a fever. At one point during the night, the thermometer was reading a fever of over 104. Needless to say, I felt like total crap on Tuesday. I had started Neupogen shots again to help stimulate cell growth, so I was having body aches, and my stomach still wasn’t acting right. I basically felt like I had the flu. They took some blood for cultures to see if I had an infection, but I wouldn’t know the results until Tuesday night.

My hair had slowly started to fall out on Monday, and by Tuesday I was pulling it out in chunks. I felt  bad enough physically that I didn’t even care that my hair was falling out all over the place. I pulled most of it out and all that was left was a patch of hair on the top of my head along with a little around the edge of my hair line. I looked in the mirror and laughed hysterically and asked my mom to shave off the rest. Now my biggest problem was that I itched everywhere because hair was all over me. I called the nurse to unhook me from my infusion of constant fluid so I could shower and rinse everything off.

I took a shower to stop the incessant itching and afterward I was completely exhausted. Like totally out of breath, I need a nap exhausted. I knew there was no way I could get up and go ride the bike this day. I hoped they could get my fever under control and I’d start to feel better soon.

Tuesday evening I was informed that I didn’t have any type of infection. I had what they call a Neutropenic fever. In non-scientific terms, my body was producing stem cells at such a fast rate it didn’t know how to handle it and my fever spiked as a result. They also managed to get my temperature low enough that night to give me some much needed platelets (I think the count was down to something like 13). That was all great, but I knew there was no way I was going home the next day at this point.

Wednesday came and my fever was now completely under control. The doctor told me I would be going home the next day and he would release me to Columbia. YES! My throat was starting to feel a bit better, so I decided to eat some chicken and wild rice soup for dinner that night. BIG mistake.

The soup screwed with my stomach so bad, I lost all kinds of electrolytes over night and they had to give me Magnesium, Potassium and Phosphorous the next morning. The nurse practitioner said she couldn’t let me go home that day because of what had happened over night. They ran a test to see if I still had C. diff. Luckily, that came back negative. But the lining of my stomach was so screwed up from having it that introducing food again made it go completely bonkers. The nurse practitioner and the doctor told me to stick to fluids for the next few days and introduce food again slowly. They told me I would be going home the next day for sure, but I was so pissed about not going home then that I didn’t even care.

I was kind of a pill that day. I couldn’t even pretend to be happy. I went to have my trifusion catheter taken out that afternoon and I flipped out on the doctor for not giving me a sedative prior to the procedure. In my defense, however, I almost had a panic attack while he was pulling it out. He gave me some shots of Lidocaine for a local anesthetic, but when he went to pull on the cath the first time, I wasn’t completely numb yet. I screamed in pain. He gave me more shots. I lay there shaking, gripping my fists as tightly as I could, closing my eyes and pursing my lips so I wouldn’t completely lose control. He continued to pull and I could feel an immense amount of pressure. That wasn’t the terrible part though: there were sound effects, like a sucking noise, as the catheter was coming out. I couldn’t handle it.

When he was finished, I looked up at him and asked in my signature bitch tone, “Y’all don’t think about sedating people before that procedure? Because that was absolutely horrible.”

He replied, “Really? I’ve never had anyone complain before. You’d have to be down here longer if we administered a sedative.”

“Oh, I don’t think I’d care about being down here longer,” I told him. “I would seriously rather have 10 bone marrow biopsies than ever deal with that again.”

He seemed shocked by my statement. The next morning when I told the nurse practitioner I had a suggestion for her, she asked if it had to do with sedation prior to getting the trifusion cath taken out. Surprised that she knew what I was going to say, I told her yes. She told me almost everyone says that. I find that so interesting considering the doctor had “never” heard that before. Maybe no one feels like they should complain to the doctor about something like that. I was so pissed at life that day I couldn’t filter shit. Everyone was going to know if I had a problem with something.

So on Friday, June 12th I was all set to go home. The nurse came in to go over some release papers with me and let me know she’d send for a wheelchair. Forty-five minutes later, my mom went to check on where the hell this wheelchair was. The nurse had asked my nurse tech to get one and take me downstairs, but he thought she asked him to take my vitals again (don’t ask me how this gets confused). I thought it was weird when he came in right after I was told I was leaving to get vitals again. I even asked him if he was sure he needed them (I could tell this guy wasn’t dealing with a full deck when he came in my room the first time that morning). When he left after nervously taking my vitals again, I told my mom I didn’t know how he functioned at life.

A few minutes after my mom checked on my wheelchair, the genius nurse tech showed up outside my door with it. My mom went to go get the car and I had to direct the nurse tech the correct way to get me to the parking circle where my mom was to pick me up. I’m sorry, but shouldn’t he know how to get there? I try to be polite and controlled most of the time, but I couldn’t even pretend with this guy. I wanted to punch him. At least I controlled myself from doing that.

So I finally made it home late Friday afternoon in time to hang out with Olivia before she went to bed. It felt so good to see her after three weeks of being away!

My follow up appointment was the next Monday with my doctor in Columbia. My blood work looked good (or as expected) for the most part, which was great news. I was shocked I didn’t need some sort of infusion. My next follow up, which is my 30 day follow up, is this coming Monday. I am hoping for more good news.

At 60 days (late July), I will go back to Atlanta for restaging. I will have another bone marrow biopsy to see if I am in remission and cancer free. I will have to wait at least a week for those results, so I hope to know by early August. Waiting is going to suck.

In the meantime, I’m kind of stuck at home. If I go anywhere in public, I have to wear a surgical mask, and that’s not really my bag. Once my white blood cell counts get back to normal, I’ll be able to venture out again. Run errands! Go to work in the office rather than work from home! Be around larger groups of people! The past six months have flown by, so I hope the next few months go by quickly as well, because I’m ready to get my life back to normal!

For now, I’m thankful my transplant went as smoothly as it did; it could have been much worse, but I have age on my side. I am continuing to fight my way back to the old normal. Fuck this new normal. I’m going to be me again soon. Me but much stronger than I was before.

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Cancer, Cancer hair loss, Multiple Myeloma, Multiple Myeloma in your 30s

An Ode to my Hair

The other day I was sitting outside enjoying the weather, and it hit me that I am going to be bald in several weeks. I have known this for a while now, but it seemed to really sink in a few days ago.

I must admit, I’m not looking forward to saying goodbye to my hair. I know it isn’t permanent, and I know it will grow back. I think about how superficial it is to be so upset about being bald, but for some reason, I am becoming more and more bothered by my impending baldness. I’m not necessarily sad and I’m definitely not looking for pity; I’m just angry.

For the most part, I haven’t looked too sick throughout this whole charade, and I think it’s been easier for me to deal with everything by making sure I look good (at least when I’m having visitors or going out in public). I just feel better when I’ve done my hair, put on some makeup and made sure my eyebrows aren’t overgrown. This is the part of me I can control right now and it makes me feel normal. But I’m about to lose control of one of my best (physical) features: the hair on my head. I don’t know yet if my eyebrows and eyelashes will fall out too, but it is a possibility. If any hair below my head decides to fall out, I bid thee farewell and I hope you never grow back. I really hate shaving.

I realize I can draw in eyebrows, I can wear false eyelashes, and I can put on a wig, a hat or a scarf. But I still have to take it all off at night and wake up in the morning and look in the mirror at a person I did not choose to become. No one chooses cancer. No one chooses to lose his or her hair. It happens to so many people, yet I’m sitting here pissed off that it’s about to happen to me, and I wish I could just let it go. But I know it’s about more than just my hair.

Maybe because I haven’t looked sick, I haven’t completely dealt with the fact that I am sick. I haven’t always felt great, but taking care of my physical appearance has made me feel better mentally and it has helped me stay positive.  I think what makes me the most angry is that I’ll be losing my hair so late in the game. I’ll be on the mend, yet I’ll look more sick than I have for the past several months. I’ll feel better, but I won’t look better. I’ll be reminded every time I look in the mirror that I’ve been sick because now I’ll be able to see it on the outside instead of just feeling it on the inside. I’m good at leaving things inside, but I’m not so good at letting them come out. I’m picky regarding who gets to hear and see my actual feelings. People will now know just by looking at me that I must have cancer. I don’t want strangers to know. I don’t want people to look at me and feel sorry for me. I somehow have to deal with the fact that I have absolutely no control over this.

Then there is dealing with my hair when it starts to grow back. I’m lucky because my hair grows fast, but I’ll be in a constant battle of cutting off a mullet. This is so ironic considering my obsession with mullets that started back in high school, during the days of dial up internet, when mulletsgalore.com only had like eight mullets listed on their website (is that website even still around?). I realize I now have the advantage of knowing how awesome or terrible my hair looks at any length. I have warned John to ignore me when I’m in the bathroom in the mornings yelling at my short hair because I hate it and there’s nothing I can do to it to make it look good but put a hat over it (I also look terrible in most hats).

So now I would like to take a moment to apologize to my hair for every time I complained that it is too thick. I am so sorry; I love you and I will miss you. There is no such thing as too thick because I can always get you thinned out at the salon. I am thankful that you grow quickly and I hope you do not change too much when you grow back. If you do change, please consider getting rid of some or all of my grays.

And now, I end this post with some of my favorite hair moments in chronological order:

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We’ve had some good times, hair. Until we meet again…

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Stem Cell Harvest

One Step Closer

This past weekend, I traveled to Emory to have my Trifusion catheter placed in my chest and to complete my stem cell harvest.  Just to explain, this particular catheter can be used for the rapid withdrawal and return of blood, which is necessary for apheresis (the collecting of cells). The tip of the catheter is in a large vessel near my heart. The other end exits othe body below my collarbone. The portion between is tunneled under my skin. The catheter is three tubes in one inside the body and separates into three tubes outside the body. It’s quite lovely. I’ll spare you any selfies with my catheter on display.

Prior to the harvest, I had to put on my big girl panties and give myself shots of something called Neupogen twice a day. This drug stimulates stem cell growth so the harvest goes well (the more the merrier). Side effects can include some bone pain. The bone pain really didn’t feel much worse than growing pains, but that pain might have been dulled by the killer headaches the drug caused me to have. Luckily I’ve dealt with both migraines and spinal headaches in the past, so I’m no stranger to head pain. These headaches felt a lot like the spinal headaches I suffered after my epidural when I had Olivia (the epidural was worth the headaches, in my opinion), but these didn’t go away if I lied flat. They also did not go away after taking my painkillers. It did help when I reminded myself this was only a temporary side effect, and I powered through. I can completely understand someone who is not used to bad headaches complaining a lot about this side effect though.

I also had to go on a high magnesium, high potassium, high calcium diet leading up to the harvest. I did not balk at my diet filled with scallops, halibut, cheese and other tasty goodies the week before. Although it was an expensive diet, it was quite satisfying for my palate.

My father and I got to Atlanta on Saturday night since I had labs in the morning on Sunday, and we were supposed to be there until Thursday. Everything went so well, however, they cut me loose on Tuesday to come home. I followed the directions they gave me for preparation to a tee, so I know that helped.

We had a hell of a time reserving the type of hotel room we needed  (a two bedroom since I’m not keen on sharing a bedroom with my Dad), and now I know why. I knew some of it had to do with Mother’s Day on Sunday, but Emory graduation was also being held Monday. I did not know this until Monday morning when I turned on the Today Show as I was getting ready and caught the local traffic report. Everything was moving great except all traffic around Emory because graduation started at 8:00. I had to be at the hospital at 7:30. It was 6:15 that morning when I got clued into everything. Great.

I showed up to the area of the hospital I needed to be at 7:32 (not too bad considering the cluster fuck of traffic in the area). Then I waited. And I waited some more. At 9:00 they called me back to the prep area for my Trifusion cath. I hadn’t taken any pills that morning (no Xanax and nothing for pain), my head hurt like a mofo because of the Neupogen injections I’d been giving myself, and I had not eaten because I was not allowed to. It literally took everything in me not to kill everyone around me. All I could think about was the episode of Curb Your Enthusiasm when Larry gets pissed because he’s always having to wait so long at his doctor’s office. What’s the point of making appointments?  I thought to myself, “What would Larry David do? I probably shouldn’t do what he would do. Just sit here and keep playing Candy Crush” (because that’s not frustrating at all).

So the nurse began to prep me, and she tried three times to access the port in my arm. The more the port is messed with, the more uncomfortable it gets. They tell you the port won’t bother you, but they are liars. It’s really annoying and I hate it; I can’t wait to have the thing taken out. After the nurse’s third attempt, gritting my teeth, trying not to yell at her or punch her in the face, I asked her as politely as I could muster for an IV. PLEASE. Just don’t blow a vein. Thankfully she got the IV on the first try. 

A little after 10:00, they came to take me to the OR. This was about fifteen minutes after some woman was brought back to the prep/recovery area, was put in the slot next to mine, and continued to moan like she was dying for like 15 minutes. I overheard she just had the same procedure I was about to have done. Before they came to get me, the doctor came to see her and decided to give her enough Benadryl to knock out a small horse. Thank you; now she can stop scaring all of the other patients in the area into thinking this procedure is going to kill them.

Once again, the sedation did not affect me quite like they thought it would. The nurse who administered my drugs right before the Trifusion cath was put in was taking me up to Hemapheresis afterward, where they were to complete the harvest, and he told me I must be an expensive date because he expected me to fall asleep during the procedure. Yes sir, I can hang all night with the big boys. I was way more relaxed than I was when they performed my last bone marrow biopsy, but it was nothing that was going to knock me out.

When I arrived at Hemapheresis, they hooked me up to this machine:

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I stayed hooked up to this machine for the remainder of the afternoon. Blood was coming out of me in one tube, another was returning my blood to me (after the machine separated the stem cells), and the third tube returned calcium to me. The red bag in the picture is my bag of stem cells. The bag that looks like pee is actually platelets, with which the stem cells will be stored. I requested not to be photographed since I want everyone to think I look perfect every day (yeah, right – I pretty much live in yoga pants and t-shirts right now), but I’m in that bed on the right, wearing yoga pants and a hospital gown :-). I was able to harvest a greater number of stem cells than I will need for three transplants. This all happened in four hours. They thought it might take me three days. I am a bit of an overachiever.

Luckily everything went smoothly, for the most part. My labs looked good on Tuesday morning and they didn’t have to give me any infusions, so they sent me on my way. I won’t lie and say I felt absolutely perfect; I was very tired after the stem cell collection, and this Trifusion cath is even more uncomfortable than my arm port. It will only be in me until I’m done with my transplant, so I’m going to do my best not to complain about it. I keep reminding myself things could be so much worse and I kick myself back into gear.

So, while we were in Atlanta for a few days, I had some very tasty food (and not so tasty food). I’ll keep this part short since this isn’t really a food blog, although those who know me well know I LOVE food. 

General Muir, a Jewish deli near Emory, is definitely worth a meal (whether it’s breakfast, lunch or dinner) if you’re in the area. They have one of the best burgers I’ve ever eaten (only slightly under salted, but the texture of the burger was perfection) and they have a really great breakfast. We also had a delicious lunch at Chai Pani, which is also in Decatur. Go here if you like Indian food (and if you don’t like Indian food, I don’t understand you, my husband included). I could get into great details about why people should eat at these establishments, but that could be its own separate post, so just trust me.

I also wanted to try Legal Seafoods since I had never been. A lot of seafood is high in magnesium, so this was going to be great for my pre-harvest diet. I have now been, and I will never return. Service was terribly slow, and I would have been fine with this (I could have excused it as being relaxed), except my food came out cold. If you’re going to charge what they charge for their food, you better serve the shit hot. My crab cake tasted really good, but it would have been excellent had it been hot. My shrimp and scallops, however, were both overcooked, and I find this to be completely unacceptable for a restaurant that is as highly touted as Legal Seafoods. Conclusion: this place is a tourist trap; do not go.

Since we got to come home a couple days early, we didn’t hit everywhere we wanted to eat. The next trip is only a day trip, so I doubt we’ll go anywhere then, but I will be there the weekend before I am admitted to the hospital for prep visits, so I’m going to try and eat as much good food as I can before I’m trapped in the hospital for 2.5 weeks.

Two weeks from today is the day I will be admitted to the hospital and the day I will be receiving my chemo. I then get my transplant on the 29th, which is my husband’s 40th birthday. We’ll be partying in the hospital room, celebrating  his 40 years on Earth and a sort of new birth for me.

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s

I Had Almost Forgotten What Hearing Good uNews Feels Like (So Good)a

As many folks already know, John and I received some really good news this week regarding my progress.  Last week I went to Emory for a multitude of pre-transplant tests, one of which was a bone marrow biopsy. I had a really good feeling about the results afterward because about two days after the procedure, any residual pain I experienced from it was already gone. It took me about a month to get over the pain from the first one I had in the hospital back in January. I felt like this was a good sign that the cancer was losing the battle and my bones were getting stronger.

Side note: Apparently the nurse practitioner who performed the biopsy thought I was some sort of lightweight. The “sedation” meds they gave me didn’t even phase me. They noticed I was totally lucid, gave me a little more, and I was still completely lucid throughout the procedure. I was so lucid, in fact, that I could have driven out of the place following the procedure (they require you bring a driver when you’re being “sedated”). They kept me for observation for about five minutes afterward, as opposed to the 30-60 minutes they had quoted me prior to the biopsy. Obviously they had no idea who they were dealing with ;-). Luckily the local anesthesia worked, otherwise I would have been screaming at someone. They also took (literally, this is not an exaggeration) 20 vials of blood from me for blood work. When results came back, my hemoglobin was really low and they were like, “You need to get a blood transfusion this week!” Well no shit; you just took like a whole unit of blood from me to run freaking tests.

So…fast forward a week, and John and I are heading to Atlanta to discuss the biopsy results and the plan for the transplant. The trip down was super pleasant, as Pandora was rocking some really good 90s music the whole way (took me right back to the days of my Doc Martens and my obsession with guys on skateboards). When we got there, they took only three vials of blood from me for labs (score), and then we headed over to see the doctor. After watching about an hour of HGTV in the waiting room, we finally got called back.

We chatted about my lab results, which looked good, and I signed the consent for the stem cell collection. We were about to adjourn, and I was like, oh shit, I need to ask about my biopsy results! The doctor let me know the results were very favorable. Over 90% of the cancer has been eliminated with the chemo treatments. They will move forward with the collection and the transplant at 50%, but it’s not the best outcome. Part of me was a little scared going in that my results would be closer to that figure, given my initial diagnosis. The doctor was very satisfied with my reaction to treatment, and John and I were elated. We haven’t been that happy in a long time.

We grabbed a quick bite before heading home because I was getting hangry (the struggle is real, y’all). We sat outside, enjoyed the weather, I drank a margarita to celebrate and ordered a burrito that I swear weighed five pounds. I did not finish said burrito. I did, however, finish my celebratory margarita. John and I haven’t had a moment like that in a long time, so it was really nice. Almost surreal.

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So, I’m all set to start the stem cell collection on 5/11 and I’ll be admitted to the hospital for my transplant on 5/27. I’ll be back and forth between Columbia and Atlanta a lot during the month of May, and I’ll be there until at least 6/12 after my transplant. There is a possibility I will be released straight home from the hospital, but they don’t typically do that. I may have to stay in Atlanta an additional week for follow up visits. Either way, I’m excited we’re moving into the next phase of treatment and that my life will eventually return to normal. The recovery from what the Melphalan (super dose of chemo) will do to my body will take a few months, but after that I should be able to return to life as I once knew it.

In other exciting news, John and I get to go to a wedding this Friday night, which I am super excited about. I can’t wait to see some friends in a social setting, eat some good food (yay for foodie weddings!), and have a couple drinks (because two is all I can handle at this point without getting shitfaced). It’ll be so nice to celebrate two awesome people and get out of the house!

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s

It’s the Little Things (That I Will Never Take for Granted Again)

Flu season has subsided and pollen season has begun. With a little help from allergy meds, I’m trying to get out of the house more often, taking precautions on where I go and how crowded it is, and making sure I wash my hands like a million times a day. I never thought I’d have an appreciation for running errands like I do now. I will never again take for granted the ability to run an errand anywhere, especially to be able to do it by myself. After you have a kid, errand running changes and going to the grocery store by yourself is a huge treat, but now going anywhere, whether it’s with someone or by myself, is pure excitement.

I have to be extra cautious right now so I don’t get sick. I can’t be around anyone who is or has recently been sick because a cold for one person could be a hospital stay for me. Chemo would have to be put on hold, and that would impact my entire treatment schedule. So for the past several months, I have not been anywhere outside of my house besides a doctor’s office or the hospital. Thankfully I love my house, especially in the Spring and Summer, but being a hermit starts to take its toll on you after awhile. I’ve had many friends come hang out with me at my house, and for that I am eternally grateful. I certainly would have lost my mind by now if it weren’t for my friends and their visits!

One weeknight a couple of weeks ago, John and I decided to scoop up Olivia and take a family field trip to the mall. Olivia was in desperate need of some new shoes (as in she had one pair that fit and she can’t wear Nike’s with everything) and I was in desperate need of socialization. I knew the mall would be dead at night in the middle of the week, so I felt like it would be a good chance to get out. And what a pathetically magical experience it was!

Unfortunately, my child has abnormally wide feet, so we came home empty handed in the shoe department. I did manage to find her a new outfit and a swimsuit, though. A little retail therapy never hurts. Side note: Two weeks later Olivia now has a pair of Crocs (I HATE Crocs, so there’s some bitter irony there) and a pair of shoes that squeak when she walks (appropriately named Squeakers – thank God you can remove the squeak) because those are the only things that will fit her fat little feet. Tootsies in Forest Acres is apparently the only place in town we are going to be able to find her shoes that will fit, which doesn’t bother me because they are super helpful there. I highly recommend going there if you are in the Columbia area, have little ones and need actual help finding shoes. Anyway, back to my super exciting mall outing…

I wasn’t ready when it came time to go home and get Olivia to bed; I just wanted to sit in the mall and bask in the glory until it closed. The elation I felt after having been out of the house to go somewhere besides a doctor’s office was inexplicable. The fact that I wanted to hang out in a mall says a lot because I typically don’t like shopping very much. I do all of my research online before I go so I have an idea of what I’m looking for and can get in and out as quickly as possible. But I got a taste of normal life and I wanted more.

Later that week, thirsting for more normalcy, I baked a cake. My mother recently found some of my grandmother’s old cake recipes and I was itching to attempt one. We have been searching for these recipes for years now and when my mother found them it was literally the best thing that has happened to me all year (so far – here’s hoping for a successful stem cell transplant!). Helping my grandmother bake birthday cakes was one of my favorite things to do when I was younger and baking always makes me feel better. I was now up to performing two normal tasks in a week’s time!

I’ve decided that as long as I’m feeling okay and my blood work looks good, I should try and venture out somewhere other than the doctor at least once a week. I still can’t go anywhere crowded, but at this point it’s exciting to go anywhere. What I wouldn’t give to go to Target, but that is still pushing it at this point (so many germs up in Target!). Plus I’d end up buying like everything in the store out of excitement, and I need to practice some restraint.

I am now on my last cycle of chemo, heading into the home stretch for the stem cell transplant. I will take my last dose on 4/13! I travel to Emory on 4/20 and 4/21 for a myriad of pre-transplant evaluation tests, one of which is another bone marrow biopsy (cheers to the Ativan and Dilaudid cocktail I’ll get before that – those of you who visited me in the hospital the day I had the first biopsy know how with it I was that day, haha). The biopsy will tell us how successful the chemo has been. I travel back to Emory on 4/28 to discuss the results and (hopefully – as long as the results are good) sign the consent for the transplant.

I don’t have the schedule for the rest of the process, but I estimate I’ll be in Atlanta towards the end of May for the transplant. Happy 40th birthday to my husband, by the way. A party in the hospital was not how I envisioned celebrating his big birthday. John doesn’t care at all because he just wants me to get better, but I have been thinking about his 40th for many years now. Probably since his 31st, which was the first birthday I spent with him. We drank a lot of beer that weekend – I’m amazed sometimes that I lived long enough to get cancer at 33 ;-). We threw some pretty epic birthday parties in the years following, although the year he proposed to me on his birthday will probably never be beat. He surprised the hell out of me, even making sure to piss me off in the process of hiding it from me, just to make extra sure I wasn’t on to him. I love that man. He can just stay 39 for another year and I’ll throw him a big party next year. Because I said so.

Anyway, after I sign consent, I will have to come home and give myself shots (correction: my awesome neighbor, Alice, will give me shots so I don’t have to do it) to stimulate stem cell growth. I will take these shots for a week before going back to Atlanta for the stem cell harvest. The harvest will take anywhere from 1-3 days, as they will be collecting enough stem cells for three transplants. I will likely have to have another transplant in the future, as they can’t guarantee I’ll stay in remission forever, so they want to collect as much as they can up front.

The harvest won’t be too bad. I do have to get another port put in (I have one in my left arm and they have to put another in my chest for the harvest – the arm port is where I’ve been getting all of my intravenous drug drips, fluids and transfusions so they don’t have to prick me for an IV like every week). They will hook me up to the same machine that is used for plasma donations, my blood will come out, spin around in a contraption that will separate the stem cells, the stem cells will be collected and my blood will be returned to me. I’ll keep the chest port in until I come back for the transplant and they’ll transplant the stem cells back via that same port.

Following the harvest, my body gets a couple weeks to rest (woohoo!) and then I’ll be back in Atlanta for my super duper dose of chemo and the actual transplant. I will be in the hospital for 2.5 weeks for the transplant and recovery. Depending on how well I recover, I may get to go straight home from the hospital. However, they may have me stay in Atlanta for another week and a half for follow up appointments.

After I come home from Atlanta, I’ll basically be on lock down again for a little while. My immune system will be equivalent to that of a newborn and it will take a few months for it to build back up. So I fully expect my friends to come hang out with my bald ass by the pool this summer :-). I’ll have lots of sunscreen for everyone since I don’t want to add Melanoma to the list of cancers my friends and I have been diagnosed with lately (because no, I am not the only person from my group of friends who has been diagnosed with cancer this year – seriously, FUCK cancer).

So that’s what I know right now. I know I miss running errands and I know I have some tests coming up once my fourth cycle of chemo is through. I also know I’m throwing an epic 40th + 1 birthday party for John next year. Also be on the lookout for Anne’s Fuck Cancer Party to be scheduled for the end of the Summer when my immune system has recovered.

When I get the biopsy results back I should have the rest of the plan laid out. Until then I’ll try to continue cooking here and there and getting out of the house some!

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Cancer, Multiple Myeloma, Multiple Myeloma in your 30s

ATL, Here I Come

I received word today that insurance is approving me to go to Emory. A big thanks goes to the awesome Case Management team over at BlueChoice for getting my exception request through so quickly!

This news is a huge relief to me. I mentioned in my last post that I had been to both MUSC and Emory to talk about treatment. I first went to MUSC, and at the end of my visit they suggested I get another opinion from the doctor at Emory, just to make sure everyone was on the same page as far as a treatment plan. I left MUSC feeling uneasy and depressed and it took me several days to get out of that funk.

A couple weeks later I had my appointment at Emory. I went in thinking there was no way I’d choose to come to Atlanta over Charleston. Those who know me well know how annoyed I get when I’m in Atlanta. I’m not saying Atlanta doesn’t have plenty of cool shit to offer (food, arts, good music scene), but I don’t even have to be driving and I get road rage there. And don’t even get me started on that time I was there with some friends during college, we went the wrong way down a one way street, got pulled over, got lost and ended up in East Point (I would like to point out I was not driving). Not that driving in downtown Charleston isn’t a complete pain in the ass too, but at least it’s near beaches.

Anyway, after waiting an hour past my appointment time and catching a nap in the waiting room, we were finally called back to see the doctor. I probably would have been more annoyed, but these days I fall asleep pretty much anywhere so I was thankful for the nap. The conversation we had with the fellow at Emory went much better than the conversation with his counterpart at MUSC. The fellow at MUSC was a complete idiot who compared my cancer diagnosis to his wife’s early diagnosis of diabetes. Umm…thanks, you’re not making me feel any better about having cancer.

Then we met Dr. Lonial and heard how his plan for treatment varied from the plan at MUSC and we were blown away. He seemed really surprised that MUSC recommended I come see him. His reaction made me wonder if MUSC even knows what to do with a case like mine. Dr. Lonial, on the other hand, does have experience treating people with similar cases to my own. Myeloma is all he does. According to his nurse, he “eats, sleeps and breathes” it. I immediately changed my mind. I will come to annoying ass Atlanta because these people are going to get me better. I left Emory feeling upbeat and hopeful, which was a complete 180 from the feelings I had when I left MUSC.

So, that’s one thing checked off the list of crap to worry about. It was at the top of my list, so now I’ll just continue with my last two cycles of chemo and move on towards the transplant. I’m feeling much better about things now, and hopefully everything else will fall into place from here on.

Most of you on Facebook have probably noticed my purple hair by this point. The dose of chemo they are going to give me prior to the stem cell transplant will cause my hair to fall out, so I’ve decided to have a little fun with it before I lose it. The plan is to shave it into a Mohawk (long enough to spike it up and take a picture) before we shave it bald. I’m looking at the bright side, and at least my head won’t be hot this summer from all my thick ass hair. I’ll get some scarves and some hats and maybe an awesome wig and rock it as well as I can. I’m just interested to know what color/texture my hair will be when it grows back. I’m keeping my fingers crossed it won’t all be grey. Please don’t let it grow back grey. 🙂

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