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:
During Melphalan (me with my ice!):
After Melphalan (at least he picked a photo from one of my favorite movies):
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:
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.