Post-Radiation

I officially completed radiation therapy last Friday. I did 10 treatments total. I had to go in every day for two weeks excluding weekends. Each appointment is very quick. They radiate me in three different areas from the front and my sides. You lay on the table and the radiation machine rotates around you. The whole process only takes about 10 minutes. I explained a lot of the process in my last post so I won’t repeat myself. But, here is a helpful website and video I found about radiation therapy and how it works.

The doctor and radiologist told me that radiation has a cumulative effect. So as the treatments start to compound together, I won’t feel the side effects or benefits until up to 6 weeks after treatment has ended. I still have pain in my back but it’s nothing compared to what I was feeling before when I had to go to the emergency room.

I’m starting a new chemotherapy drug this week that is supposed to help with the bone metastasis. It’s supposed to make me really achy and sore. Let’s hope that doesn’t happen. I’ll be continuing with my brentuximab treatments once every 3 weeks probably for the next year.

I start my job on September 16. I’ve slowly been moving my things to Rome. I didn’t realize how much stuff I had. But, the move has been making me and Justin clean out all of our junk, which is good. I’m excited to start working again, especially in the field that I was actually trained for. That usually never happens. It will be sad not being able to run errands in the middle of the day while everyone else is at work. But, still excited! I can’t wait for government benefits and to be off of Obamacare.

For Labor Day Weekend, Justin and I went to Asheville, North Carolina with a few of my friends. We got a nice AirBnb so there was plenty of space for the 5 of us to relax in the mountains. We all arrived at the house late on Friday night so we didn’t do much except play some games. The next day, the guys went on a crazy, difficult hike. Amanda and I stayed back with the dogs. We explored downtown Asheville and walked around a lot. We ate at this popular breakfast spot called the Over Easy Cafe. Everything we ordered was so good. We explored around the Grove Arcade (where I bought fudge) and found a really cute bee/honey store called the Asheville Bee Charmer. We also came across some arts and crafts markets. There’s a lot of people on the street doing live music, too.

Our Uber driver later on in the weekend told us that there’s a law that doesn’t allow any chains in the downtown area. The only chain restaurants that are currently downtown are only there because that’s where the chain started (Tupelo Honey Cafe and Chai Pani). You can’t close down the original. That’s why all of the restaurants are so good!

The people there are pretty nice too. There’s a very young, hipster vibe. All of the restaurants serve tofu and tempeh. Everyone brings their dog everywhere. People are so outdoorsy. And the weather was perfect all weekend!

We hung back at the AirBnb Saturday night and made a steak dinner to watch the UGA game. Go dawgs! Then, we played some more card games and called it a day. The guys were pretty tired from the 7 hour hike. Everyone passed out pretty much before 10 PM that night.

On Sunday, we cooked breakfast and headed out to go tubing. The river was so wide so everyone could spread out and it didn’t seem crowded at all. The scenery was so pretty and the water wasn’t that cold… once you got used to it. We got back, cleaned up, and headed out again. We explored some more of the downtown area while we waited on our dinner reservations at Chai Pani. There’s a lot of cute stores downtown and a lot of places to just hang out. I bought some tea, spices, honey, fudge, books, etc. Support small businesses! Another place we hung out for a while before dinner was the Battery Park Book Exchange and Champagne Bar. We didn’t have any champagne. They also had coffee, wine, and other drinks. But, they had so many books and fancy special editions. You could also bring your dog there so there were a lot of cute pups there too. It’d be a nice place to do a happy hour and just relax.

After dinner, we went to Burial Beer Company since Asheville is known for their breweries. We caught some fireworks from the back porch there, too. Then, we walked down the street to the Wicked Weed Funkatorium, another brewery but they only had sours. Have you had a sour beer? It is… sour! Some of the beers were good. Others were way too sour for me. After that, we headed home and played BANG! until we couldn’t keep our eyes open anymore.

On Monday, Justin and I had to head home earlier than the rest of the group. After breakfast and packing up the house, we went back downtown to walk around some more while the other half of the group took the dogs on a hike. The drive was only about 4 hours for us. But, the scenery was so nice we actually stopped at one of those scenic stops along the side of the highway to take some pictures. It was a nice weekend away before more moving and starting the new job.

The whole group in front of our AirBNB.

The whole group in front of our AirBNB.

In other news, I’m doing the LLS Light the Night Walk again this year. Here are some links for that.

To register to walk and be on my team, go here. The walk in Atlanta is at Centennial Olympic Park on October 8. Everything starts at 5 PM and the actual walk won’t begin until the sun goes down. There’s a good chance I’ll be speaking at the opening ceremony too. It’s a two mile walk and it’s family and pet friendly!

To donate to my team, go here.

To buy a team t-shirt, go here. Shirts will only be sold until September 16 so that there’s time to ship them and get them in time for the walk. So there’s ONLY 10 DAYS to order!

Thanks for the support everyone! Hoping for another big turnout this year!

~SL

Family Reunions and Tattoos

Since I didn’t have to start radiation until Monday, I decided to head up north to spend some time with my family. I had a trip planned already before I knew I would have to do radiation. Luckily, I booked with Southwest, so rearranging my dates wasn’t much of an issue. On Wednesday, my sister and I flew out from Atlanta to Baltimore. We had dinner and did some Pokemon hunting by the inner harbor. The next day we headed up to New York after breakfast.

Our first stop was my aunt’s house in Yonkers. My mom had filled my luggage with clothes for my grandma so I wanted to make sure I got rid of that as soon as possible. Luckily, my cousins were also there watching two of the kiddos, Leo and Avery, and my aunt was already home from work. My grandma is home all day, of course. My uncle is retired too. So it was already a full house. Three more of my cousins came over as they got off of work and we had a nice family dinner, while watching the boys.

The rest of the week and weekend was spent in Nanuet at my uncle’s house where my other cousins were visiting from San Francisco with their baby girl, Lyra. We hung around town on Friday and prepared for the family festivities on Saturday.

Lyra’s first birthday party was on Saturday and everyone came over to the house. There were so many babies! We had so much food too! My cousin, Vicky, and her fiancee, Ryan, also announced that they are having a baby girl due in January. It’s also my cousin, Victor’s, birthday next week. So, we had two ice cream cakes for him and Lyra. The steroids I’m on make me so hungry all the time so I ate everything… twice. Even after the barbecue, the kids wanted pizza. So we also ordered Pizza Hut… and White Castle. We always get White Castle when my cousin, Trang, comes up from Philly. It was crazy. And I ate everything. It was great.

I also got to talk to my cousin-in-law’s dad about his Myeloma. He’s already beat it once but he’s starting to get back pain just like I did. So we had a lot to talk about. It’s nice talking to other survivors who have similar experiences. He also had to do a stem cell transplant and I got to ask him what radiation was like. Please keep him in your thoughts as he goes through all the testing and processes to figure out what’s going on with his back pain and elevated blood counts. He’s been a survivor for so long and we need to keep it that way!

Since I had so much space in my luggage without all of my grandma’s clothes, I was also able to bring home a lot of food. I brought back 10 bagels for myself from my favorite place in the world, the Rockland Bakery. Best bagels ever! Sorry, Nyack Hot Bagels. I wish I could have brought home more. Ugh and so cheap. My mom also made me haul home 15 frozen baos for her. I got searched at security because of those. I also had 2 dozen of my aunt’s almond cookies that she always makes for me. So good!

Visiting Grandpa and Cau Dung.

Visiting Grandpa and Cau Dung.

Pictures with Grandma before leaving.

Pictures with Grandma before leaving.

I love going home. I love being in a loud, crowded house full of food and laughing babies. Family really is the best medicine. I wish I lived closer to them all the time. But, I know I’m pretty lucky to have such a big, supportive family. Even though they’re all across the country, they’re the best support system I could ever ask for. I can’t wait to go back.

Group picture. Still missing some.

Group picture. Still missing some.

I started radiation on Monday (yesterday). It’s… scary. I think it’s worse for me because of my fear of robots. Everyone at the cancer center is really nice though. I’m definitely the youngest patient there. But, everything runs very efficiently and I’m in and out in no time at all. Yesterday, my appointment took about 30 minutes, which is considered long, because they had to take some more scans and adjust the lasers and stuff.

When I get into the treatment room, they have my leg mold on the table. I just nestle myself into the mold and lay down on the table. Today, I didn’t even have to change into a gown so that cut down on some time too. They line you up with where they’ve marked your body for your treatment area. The first day, they marked me up and took pictures. This is so they know exactly how to set you up when you come in if there are different nurses and radiologists working.

Once they leave the room, the machine starts up. It’s so scary. Also, the room is dark so that doesn’t help. You just see these green lasers. But, those are the ones to align you. You don’t see the actual radiation beams. The machine is huge and it rotates around your body so you don’t actually have to move. It’ll zap me from the top. You know when they’re zapping you because it makes that loud, buzzing noise like when someone buzzes you into an apartment. Then, the arm rotates around and does my right side. Then, it rotates around again and zaps me from my left side. It’s so creepy. But, that’s it. It lasts like a whole ten minutes.

They said since I’m being radiated around my stomach, I’ll have some nausea and more frequent bowel movements. I have to go every day for 10 days, not including weekends. Since it’s a relatively short treatment, I shouldn’t get those radiation burns or skin irritations like other people do with longer treatments.

The treatment area on my abdomen.

The treatment area on my abdomen.

Left side mark ups.

Left side mark ups.

Right side mark ups.

Right side mark ups.

I also got my first tattoo! Not what you think. Once they find the treatment area and where the radiation beams have to go, they tattoo you in those spots so they don’t have to mark you every time. After my first treatment, I got five tattoos. They’re just little dots. I have three on my abdomen and one on each side. I always thought about getting a tattoo. I guess at least these have meaning to them now. Maybe I can make them into flowers when I’m done. But, even just the dots hurt, so I don’t think I could do it.

Tiny dot tattoos. I have two more on the sides too.

Tiny dot tattoos. I have two more on the sides too.

My radiation oncologist said I wouldn’t start feeling the side effects until next week. Right now, I just feel really tired after treatment. Who knew that getting zapped with lasers could make you so sleepy? But, I’m trying to power through because I have a lot to do before I start my new job on September 16. Yay!

I’d also like to give a shout out here to Jason, Amanda, Andrea, and Tricia for giving me rave recommendations for my job interview. You guys are awesome and I couldn’t have done it without you! I’m so lucky to have such supportive friends, managers, and supervisors who really care about where I end up. Thank you, thank you, thank you!

I'm moving!

I’m moving! Holla if you want to send me stuff.

I also have a double treatment day this week on Thursday. I have chemo in the morning and radiation in the afternoon. Sounds crazy. We’ll see how that goes.

One last thing. I’ve agreed to be a story teller at this year’s LLS Atlanta Light the Night Walk on October 8th! This is the largest crowd I’ve spoken in front of since my high school graduation. They’re expecting 10,000 people and I hope to see all of your lovely faces in the crowd! You can donate to my fundraising page here. You can join me and my Remedy for Remedi team on the walk by registering here. I’ll be unveiling a new team shirt design by the lovely Crystal Petersen at the beginning of the month, so be on the lookout for that so you can order yours and represent from wherever you are!

It’s been a crazy few days. It’ll probably be crazy for a while. Let’s do this!

~SL

Radiating

I’m officially past my 100 days post-transplant. The pain in my lower back was getting really bad. I ended up in the emergency room for it. They were finally able to see on a CT scan that there was a tumor growing against my spine. So my oncologist decided it was time to look into radiation. They sent me home with painkillers and steroids.

Today, I had my consultation with radiation. We went over medical history in depth and watched a really boring video about how radiation works and what the process was going to be like. I also met my radiation oncologist and she went over everything with me again. It was one of those nice doctor talks where you actually understood everything she says. I like her.

We did a simulation after that. This is when they put you into a CT machine to take some final measurements of the tumors so they can consult with the treatment team about how to approach the tumors. They also made an air mold of my legs so that I can stay still during treatment. That was weird. Now, when I come in, they just put my mold down on the table and I just get in. The radiologist also marked where they would be pointing the lasers. So, I have 3 x’s on my stomach.

We’ll be starting with 10 treatments, everyday for 2 weeks Monday-Friday. Each appointment is very short though and only lasts like 30 minutes. Radiation is very quick. They said to expect some nausea and fatigue with a bit of a sunburn. Everyone survivor I talked to said radiation was much better than chemo though. I’ll still be continuing the brentuximab too.

My first radiation treatment begins on Monday. So I decided to take a quick trip to New York this upcoming weekend to visit my grandma and spend time with my family before everything gets started up. That’s pretty much it for my cancer treatment at this point.

My sister has been home since she just graduated. We took a family trip with Justin last weekend to Chattanooga. We mostly walked around a lot and ate at some good restaurants. We took a lot of pictures. Chattanooga is so scenic. Everything is so pretty! But, it was a quick drive from Atlanta and it was nice to get away for a bit. We stayed at a really cute AirBNB with a really dangerous driveway.

This past month, I’ve also been interviewing for a job. I had my first interview before I went to Baltimore. I had my second interview when I got back from Baltimore. After getting fingerprinted and passing my background check, I was given an official offer. Starting on September 16, I will be a training and development specialist for District 1-1 of the Georgia Department of Public Health.

It’s been over a year since I graduated. I have been waiting to finally use my degree. Everyone told me I was paranoid about not being able to find a job after going through all this treatment. I guess they were right. But, it’s hard for me to get too excited about this because last time I got excited about graduating and starting work, I got cancer. Fingers crossed that nothing goes wrong.

But, I am excited to start working again, especially in emergency preparedness. It’s exactly what I wanted to do after I graduated. It’ll be nice to have something in my life that doesn’t revolve around cancer.

So, there are a lot of things happening right now. It’s exciting. It’s scary. I’ll let you know how it goes.

~SL

100+

Yesterday, I reached 100 days post-transplant. That’s the safe period where I had to be in isolation and on a neutropenic diet. But, my doctors weren’t too worried about me. My oncologist let me fly to Baltimore for my sister’s graduation from nursing school. I just had to be smart about it, wearing a mask in crowded places and on the plane.

I think traveling went pretty well. I was very paranoid every time I heard a sneeze or a cough. I also got tired really quickly. The Atlanta airport is LARGE. Our gate was all the way at the end of the terminal. We had to get wheelchair assistance for my dad since he’s still wobbly. Our wheelchair assist person walked SO FAST. I guess it was good exercise, but it wore me out just walking through the airport.

Baltimore was very hot. My sister took us to places that were either outdoors with fresh air or large so that we wouldn’t be on top of other people. Her graduation was pretty quick, which is always nice. She ended up being the very last person called because she got out of her seat and they wouldn’t let her back in. She officially has her Bachelors of Science in Nursing, not officially a registered nurse yet. Yay!

We also had a quick stint in Washington, DC because my dad really wanted to go to the Air and Space Museum. We never do things that dad wants to do. So we did it. We also went to a Viet shopping plaza in Falls Church, VA afterwards for some lunch. It was a quick trip, but it was good.

My cousin, Nick, also visited me the weekend before we went to Baltimore. He said he just needed a getaway. He knew I couldn’t do much. We just hung out and went Pokemon hunting. All of my younger cousins are becoming so grown up! I feel so old. But, it was nice to have family in town. He also drove us everywhere, which was a plus because it’s so uncomfortable having a port with a seatbelt across your chest.

Other than that, I haven’t been up to much. I’m excited to be able to go out and do things again. I miss grocery shopping. It’s not the same making a list and having my mom go for me. I can’t wait to eat raw sushi, soft cheeses, and soft serve ice cream again! I can’t wait to go to Target! I miss Target. I think those are on the top of my list.

I have my 3rd cycle of brentuximab next week. My sister is also coming home for a couple of weeks. Then, I’ll be going to New York for a week to see my family, the new babies, and celebrate Lyra’s very first birthday! August should be a good month. Things are looking up! Yay!

I will leave you with some pictures of me and my sister in Baltimore.

Pokemon hunting on top of Federal Hill with a view of the Inner Harbor.

Pokemon hunting on top of Federal Hill with a view of the Inner Harbor.

Following dad around the Air and Space Museum.

Following dad around the Air and Space Museum.

~SL

Plan E

UGHHHHHH. That’s pretty much summarizes all of my feelings for the past few weeks.

I went to my BMT doctor to go over my PET scan results. All he told me was that it seems like my lymph nodes in my abdomen and pelvis are “starting to warm up again.” So, he ordered another biopsy of my left axillary lymph node again. That’s my armpit. Well, I got those results back today and all it confirms is that I still have cancer. Awesome. Thanks.

I’ve still been in this incredible abdominal pain. It spreads to my back and my legs. I barely want to move. I want to sleep, but it hurts too much. I can take narcotics like oxycodone for the pain but it makes me feel so crappy and backs me up. I’m already having abdominal pain. I don’t want to have anything stuck in there either. I’m so gross. So I basically live off of tylenol. I’m probably ruining my kidneys, but I have no other relief other than all of these heating pads that Justin got for me. I can’t even eat anything because my nausea is so bad. I throw up about every other day. The most I can eat in a day is a PopTart. I’ve lost about 15 pounds.

My doctors are pretty confident that the autologous stem cell transplant didn’t work on me. My BMT coordinator said I should start trying to find a way to have a caregiver who can be with me for 6 months after an allogenic transplant (stem cell transplant with a donor). Who has time for that? Who has money for that? I’m so tired.

Until they can figure out with they want to do with a second transplant, we’ve started on brentuximab again. Today was my first day. They want me to do 16 cycles so I have an appointment in a couple weeks to get another port placed in my chest. They had to stick me 3 times today to get an IV in for my treatment. My veins are dead. If I had a nickel for every person who has called me a pin cushion, I would have… probably a whole dollar! I have had the best results with brentuximab so let’s hope that keeps up.

My doctor finally got me a consult with a GI doctor for next week to figure out what’s going on with my abdominal pain. I’ve diagnosed myself through WebMD and I think I have a stomach virus. But, I can’t fight it off because my immune system is still rebuilding.

So I’ve just been in a bad mood for the past few weeks because I’m in so much pain all the time and I can’t seem to catch a break with any good news at all. Someone give me good news!

Alright. I’m done with my rant now. Let’s hope I have some better news next time. Until then! Thanks for letting me complain.

~SL

Day 54+

I feel like all my posts start out the same way these days. I’ve been so exhausted lately. I can barely do anything. But, let’s see what important stuff happened.

I had a follow up with my regular oncologist. She was surprised I was discharged from BMT so quickly but said I was doing really well. My BMT oncologist wants me to do another 16 cycles of Brentuximab. So we’re planning to start that at my usual cancer center. It’ll take a little over a year to complete. But, since my port was removed, we may have to get a new one put in. The veins in my arms are pretty much dead. We’ll see what happens.

We were planning to start Brentuximab in the beginning of June. My oncologist said I could wait until I get my PET scan and see the results and stuff. But, I wanted to start as soon as possible.

I went into the office on June 2 for my first cycle of Brentuximab. Walking into the chemo room for a fourth time sucks. All the nurses are like, “Stephenie! Good to see you!” But, in their eyes, you know they’re thinking, “Damn… she’s back. That sucks.” But, it’s ok. I love my chemo nurses.

I was in the midst of getting set up and I was telling my nurse about this acute abdominal and back pain that I’ve been having for a week or so. I tried calling the office and the BMT office about it but no one seemed to care that much. But, the pain is so excruciating. I’ve just been living off of tylenol.

She told my oncologist and they moved me to an exam room. My doctor wasn’t even in the office yet, but she wanted to see me before starting treatment. After she got to the office and examined me, she sent me to the ER.

My mom drove us to the Northside Cherokee ER. There’s no way my mom could drive into Atlanta to get to Northside Atlanta. It was my first time in the ER. We were basically there for like 6 hours. I threw up twice. They did a CT scan and drugged me up to get rid of the pain. They decided to admit me to the hospital because they couldn’t figure out what was wrong. That same day, I also had an EKG, gallbladder ultrasound, MRI, chest x-ray. Everything.

Northside Cherokee is pretty small. I don’t think they knew what to do with a post stem cell transplant patient. So they were extra cautious with the PPE to enter my room. My sorority sister works at Northside Cherokee as a pharmacist. She saw my name on an order and came to visit me. Kelsey and Justin also came that first night I stayed in the hospital.

The next day, I was transferred to Northside Atlanta back to the BMT unit. It was my first time in an ambulance. I was supposed to get a PET scan that Monday, but they ran out of radioactive dye. I guess no one at Northside Atlanta does inventory. So I got my PET scan on Tuesday and they discharged me. They still have no idea what’s wrong with me. All of my tests came back normal. The only weird thing is that my white blood cell count is up. They just sent me home with some really weak pain meds. I think I have a high tolerance for pain meds though. It was the first time I had morphine and it didn’t do anything for me. People probably hyped it up too much. I have a follow up with my BMT doctor on Monday to go over my PET scan results.

So that’s pretty much what’s been going on with me. I’ve just been in constant pain for the past couple weeks. Even after 5 days in the hospital, my doctors still don’t know what’s wrong with me. Hopefully, we’ll find something out tomorrow.

In happier news, my cousins welcomed their baby boy into the world on June 7! His name is Avery. Isn’t he precious? I can’t wait to meet him.

Avery Carter Kish

Avery Carter Kish

~SL

My Stem Cell Transplant

This is going to be a long post.

I was admitted to the BMT Unit at Northside Hospital Atlanta on Tuesday, April 19. They took my blood and we settled in for a couple hours before they started my transplant. My mom and Justin took me to the hospital and a bunch of my sorority sisters (ECKO, Forté, Demure, AiKo) came a little bit later to be there for my transplant. I lucked out because the nurse that was performing the transplant was actually a mutual friend so she wasn’t just some random stranger.

Everyone who was there the morning of my transplant. Some more people came later on in the day.

Everyone who was there the morning of my transplant. Some more people came later on in the day.

A stem cell transplant is pretty interesting. The stem cells that they harvested from me before my high dose chemo were brought over from where they were being frozen and stored. They’re put in these huge syringes. There were 4 total. It was basically like a blood transfusion. They just pushed the syringes through my triple lumen catheter in my chest. I had a bunch of pre-meds. Most of them were to prevent nausea and an allergic reaction. Ironically, I threw up right after they gave me all of my pre-meds. I felt super sick while they were pushing the stem cells. But, the whole process took probably 20 minutes.

 

Pre-transplant prayer.

Pre-transplant prayer.

Another fun fact about stem cell transplants: you smell like garlic and tomato soup afterwards. I smelled like tomato soup for days after my transplant. When I was walking in the hallways, I always knew who got their transplant that day because you could smell it. So weird… and a little gross.

Feeling sick during the transplant. The closest thing we could reach to catch my vomit were these paper cups.

Feeling sick during the transplant. The closest thing we could reach to catch my vomit were these paper cups.

Everything was going pretty well. I got a few blood transfusions and a few platelet transfusions. About 8 days after my transplant, I developed a fever and I was feeling really bad. I basically slept all day because of all the meds they were giving me. After they tested my blood cultures, they found that I had an infection where my port and catheter were. So on April 27, they took me down to radiology to have my port and catheter surgically removed. They gave me meds to “relax” me during the surgery so they didn’t have to put me under. Justin says I was really out of it when they wheeled me back to my room. I don’t even remember the surgery or being taken back to my room… or Justin being there when I got back.

After the fever and infection were under control, everything started to get better. The only think that really sucked was that I had to have IVs the rest of the time because I didn’t have my catheter anymore. So instead of taking blood from my catheter, I had to be stuck with a needle every night. They took blood work every night at midnight. I also had vitals taken every 4 hours. So the most sleep I could get in the hospital was 3-4 hours at a time.

It was pretty uneventful once I started to recover and my blood counts started to normalized. For the first week and a half, I was throwing up 2-3 times a day. They finally changed my anti-nausea meds to something that actually worked for me. A few days before I was discharged, they started weening me off of some of my medications. So I ended up throwing up again before I left. But, it definitely wasn’t as bad as the beginning.

The nurse practitioner and doctor would come in on their rounds every morning and tell me that everything was looking good. Eventually, it was just like, “Hey. What’s up? You good? Ok. Bye.”

Eventually, the veins in my left arm were so beat up from blood work every night. I got stuck one night and no blood came out of my vein. So she tried to stick me again in my hand. No blood. I didn’t even bleed when she took the needle back out. She tried to stick me again in another spot on the back of my hand. Nothing. So 4 more nurses came in. Another nurse tried. No luck. Finally, another nurse tried and finally got some blood. They could only use my left arm because my right one had two IVs in it.

One arm. Two IVs.

One arm. Two IVs.

The hospital was really nice. I think I only had one nurse that I didn’t really like. Luckily, I only had her for one day. There were very accommodating to family members. There was even a pantry where you could get free ice cream! Sorry if you visited and I forgot to tell you about that. I had a lot of visitors too! That definitely made time fly by. My best friend, Kelsey, came every single weekday after work and every weekend for a few hours. Knowing that I was always going to see someone that day made things a lot more bearable. She also brought a bunch of pictures to brighten up my room. My LLS family brought me some decorations too.

I’ve been home since Tuesday. I’m so glad to be able to sleep in my own bed and not be poked and prodded every day. Definitely happy to not have to eat hospital food anymore. I’ve been sleeping so much. It feels so good.

I’ve had two follow up appointments at the BMT clinic already. I had some side pain but my doctor said I probably just strained something because he didn’t feel anything alarming when he did the exam. Otherwise, all of my blood work looked good. I’m supposed to be discharged from BMT and handed back over to my regular oncologist next week. They said usually people stay in BMT care a little bit longer but I’m doing so well.

It makes me nervous when they say I’m doing really well though. In the hospital, so many people were so much sicker than I was. This is the same thing that happened with my first 3 chemo treatments. They said I was doing great and when the PET scan came around, they found that it didn’t actually work. So I’m trying to stay positive. But, I’m really hoping this is not deja vu. We don’t have any scans scheduled yet. We’ll see what the plan is for that. I just can’t wait to be able to drive again. I don’t even really understand why I’m still not allowed to drive.

Even though I’m at home, I still have to be in isolation for a few more months. I won’t be able to go into public places until the end of July. Hopefully, I’m recovering so well that maybe it’ll be sooner than that. I can have visitors at my house though. Just don’t be sick.

I’ve been very paranoid since I’ve been home. Everything was so clean and sterile in the hospital. Being back home, I feel like everything is going to get me sick even though my white blood cell count is back to normal. I still need to redo all of my vaccinations since my immune system was wiped clean.

I can’t wait for things to get back to normal. I’m tired of going to the doctor every day. I’m really, really sick of being so dependent on other people. It feels like I’m being such a burden. My mom had to take off 3 months of work and my dad keeps having to take time off to drive me to my appointments. I hate not being able to do things on my own.

I suppose that’s all that’s happened. I’m just trying to get my appetite back. My taste buds are still all messed up. Everything tastes sour, even water. I’m also still very tired all the time. I’ve gotten a lot weaker too. A lot of recovery still.

Thank you to everyone who donated platelets for me. I think the lady at Atlanta Blood Services was blown away by the number of people who called for me. Thanks to everyone who came to visit me in the hospital. I felt like I always had the party room. Thanks to everyone who checked in on me and kept me company even though you couldn’t be there in person.

I don’t think these next few months will be too eventful since I’ll just be at home in isolation. But, I will keep you updated with any scans/doctors appointments. Congratulations for reading this whole rant! Most of you probably didn’t. I know I ramble.

~SL

Mobilization

I know I said before that things were crazy. But, it just keeps getting crazier! I just needed a day to relax before sitting down and writing about it. There is just so much going on. I think my last post ended with my medical evaluation day.

Since then, I’ve had to go back to the hospital for my EKG and echo. Good news! All of my test results came back great. My mother and I went back to the BMT office that following Tuesday for “patient education.” The nurse went over all of my test results and everything was great. Lungs, brain, heart – all good. That kind of pissed of my mom. “If everything is good, why is she sick!?” She gets on my nerves, but I know it’s out of love. I can’t imagine going through all of this with my own child.

We didn’t really learn much on patient education day. It really just felt like a waste of a day. That Friday, I started my Neupogen injections at home. This is the medicine that helps my bone marrow overproduce stem cells so that there’s enough to collect for the transplant. I had to inject myself every morning and evening. The first time I had to shoot myself, I had to do a countdown. I guess I got used to it pretty quickly. The syringes had to be refrigerated so it was kind of a pain to take them along during my birthday trip to Nashville. But, of course, I had to. Gotta do what you gotta do.

My birthday weekend also happened to be my last weekend of freedom so my awesome boyfriend, Justin, took me to Nashville for one last trip. It was close enough to travel with the Neupogen in a cooler and I wouldn’t get too sore from being in the car for so long. We both had also never been there before. We got there late Friday night so we just walked along Broadway (Honky Tonk Highway) and found a restaurant (The Stillery) to eat dinner. The mac and cheese was really good. Broadway reminded me of Bourbon Street in New Orleans. There were so many people everywhere. So many lights. Live music on every corner. It was so lively! I just wish I wasn’t so sore from the Neupogen (it causes bone pain since your marrow is being overworked) and that I could drink.

Saturday was my birthday so we did everything I wanted to do! We had lunch at the Peg Leg Porker, a really delicious barbecue place. We went to the Musicians Hall of Fame. They were having half price admission because they just opened a new Grammy exhibit. We walked around until I got tired, which didn’t take long (especially with stairs! OMG!). That night, we had an early dinner at 5th & Taylor. It was so good and when I got back from the restroom, Justin had ordered a dessert with a candle for me to blow out.

At the Grammy Exhibit at the Musicians Hall of Fame.

At the Grammy Exhibit at the Musicians Hall of Fame.

My birthday Elvis dessert.

My birthday Elvis dessert.

After dinner, we headed to the Grand Ole Opry. Neither of us are country music fans, but it’s what you do when you’re in Nashville. The show is live on the radio so all of the hosts and musicians are very entertaining. Even for not being a country fan, it was a really fun night. It was a full house and we bought last minute tickets. We were all the way on the end, but still a really good view. We even saw fireworks on the way back to the hotel. I love fireworks!

The Grand Ole Opry!

The Grand Ole Opry!

The next day we had lunch with one of my high school friends, Jessica, before we headed out. She swiped right on Justin on my Tinder account (gasp! We are a Tinder love story!) so we owe her. We headed home listening to Ask Me Another the whole way back. We went out for sushi that night with my parents since I won’t be able to eat raw fish post-transplant. It was the perfect last weekend of freedom.

On Monday, I had to have my triple lumen catheter placed. They said they would give me something to make me “comfortable” but I wouldn’t be completely put under. But, I just couldn’t get comfortable enough. I didn’t feel anything, but I was wide awake. I couldn’t see anything because they had me covered up with the sterile drape, but I felt when she tugged the catheter underneath my skin. Justin and my mom were with me at the hospital all day. Well, it actually didn’t take that long. We were back home by the afternoon. I’m still sore from the catheter, but I have lots of pain medication. And I’m still trying to figure out the best way to shower with it since I can’t get it wet. It takes a lot of press n’ seal wrap.

My triple lumen catheter. I have to have this for at least 30 days.

My triple lumen catheter. I have to have this for at least 30 days.

Tuesday was my first day of collection. I didn’t know what to expect. I got hooked up to the apheresis machine. One line took my blood out. It cycled through the machine to remove the stem cells and then the blood got cycled back into me through a second line. The third line was for calcium. I guess the process depletes your calcium quite a bit so they give you some IV calcium during the collection. About an hour in, my nurse, Angel, noticed my potassium was low too. So they added some IV potassium to the calcium line. We were there for about 4 hours. Angel basically stood by my side the whole time to monitor everything. My mom just watched TV. I couldn’t pee! If I had to pee, I would have had to use a bedside commode. So I just didn’t drink any liquids.

We had to hang out for two hours after the collection so that the stem cell bank could process everything and let us know if we had to do another collection day. Luckily, I stayed on top of my Neupogen because they said they collected above and beyond what they needed! Stem cells are a milky kind of color. So Angel likened my stem cells to a bag of tomato bisque. The process could have taken up to 4 days, so I got the rest of the week off!

Since the catheter placement, I’m no longer able to drive (not sure why) and I can’t go into public places because I’m at a higher risk of infection. So I have the week off, but I haven’t been able to do anything.

Next Tuesday, I’ll have some pre-chemo labs and evaluation. Then I start high dose chemo on Wednesday. I’ll have chemo every day up until my transplant on the 19th. It feels like things are moving pretty quickly.

I tried to see as many people as I could before my pre-transplant isolation. I had a last minute Rho Class brunch with my line sisters. Alana drove in all the way from Columbus, GA. Danielle got in the night before from Gainesville, Florida to surprise me! We hung out for a bit after eating. Danielle had to leave for Florida shortly after so it was really a quick trip for her. My line sisters are the best.

My beautiful Rhos.

My beautiful Rhos.

I had a last minute dinner with my sorority family line too. My grandlittle came all the way from Athens to have dinner with us. We had sushi. Again, trying to get all of my sushi in before I can’t have it anymore.

One of my line sisters, Diana, donated her platelets today! At Atlanta Blood Services, your donation goes straight to me. I think that is so cool! Justin is going to do it this weekend after he takes me to my doctor’s appointment. One of my sorority sisters is also getting her dad to go donate this weekend too. Just remember, a transplant patient needs 50 units of platelets on average. So if you have a few hours to spare, please go donate for me! Blood type is not an issue because they’re just taking platelets and not whole blood. The biggest issue people are running into is that they’ve recently gone of the country or they’ve gotten a tattoo within the past year. But, you can call ABS and they’ll pre-screen you and schedule an appointment. They have two locations – Atlanta/Northside and Cobb County. Do it! Be my hero! Save my life! Even if you can’t donate, please share the info with your friends, family, coworkers, anyone in Atlanta!

Donate Today!

Donate Today!

I’m a little high on pain meds right now. So I’m not sure if I rambled or if all of this made sense. But, that’s where we are now. Getting ready for chemo to start and then my 3 week stay in the hospital. Getting closer to the end!

I just want to thank everyone who has been there for me. All of the rides (since neither my mom or I can drive all the way to Atlanta), all of the check ins, the platelet donations, etc. It really has been so crazy but I don’t think I’d be able to get through it without everyone’s help and support.

Also, big thanks to everyone who donated to my Light the Night fundraiser. I wanted to raise $500 for my birthday. But, it’s all the way up to $1,345! Thank you so much to everyone who donated! Don’t forget to sign up to walk with me and my team if you’ll be in Atlanta!

I love you all! Thanks for reading this ridiculously long post.

~SL

The Ides of March

March has been a hectic month so far. It began with a visit from my sister and her boyfriend, John. They were here for almost a week while she was on spring break from nursing school. We didn’t do much while they were visiting. Her visit mostly consisted of eating a lot.

While she was here, we found out that my dad had two broken hips. At first, we thought he just had one. They did a couple more tests and scans and found out that there were actually cracks in both of his hips. He ended up having double hip surgery the day before my sister went back to Baltimore.

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He was only in the hospital for a couple days after that. His home health nurse and doctor say he’s recovering nicely. But since most people only break one hip at a time, recovery will be longer than usual. He said he’s already feeling better and stronger. He’s getting really good at walking. He just has to use crutches to brace himself for a while. He’s already back at work and everything. So he’s doing well.

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I gave my second survivor speech at another LLS event for the Team In Training Publix Marathon Inspiration Dinner. I put together a slideshow of pictures to play in the background while I spoke. Some people came up to me afterwards to wish me well and thank me. It was really nice.

 

I had my last Brentuximab treatment on March 14. I recovered pretty quickly. I had my PET scan on March 21. It was quick and I didn’t break the machine this time! My oncologist scheduled a follow up with me on March 28 to go over the results. But, my transplant coordinator looked up my results in the hospital system and gave me a call late Tuesday afternoon to say they wanted to begin the conditioning process for the stem cell transplant immediately since my results looked good enough to start.

On Wednesday, I had my first day of conditioning which involved my medical evaluation. I was lucky enough to be able to arrange enough people at the last minute to drive me to and from my appointments. My day began waking up at 5 am. My line sister, Diana, picked me up at 6 am to go to the transplant center in Atlanta. It was a long day!

It began with taking blood for all of my labs. They took 15 tubes of blood! Usually my lab work only takes 2-3 tubes of blood. But, she just kept going. I also had to do a VRE sample, which I’ve never done before. But, it basically consists of you taking a swab around your rectum. Awkward. I googled what it tests and I guess it’s something to do with your risk of infection… or something.

Next, I had to do my third bone marrow biopsy. I was really hoping to be sedated because it is the worst pain ever. But, they assured me that it wouldn’t be so bad this time because they’re a bone marrow center and it’s what they do. They also only took samples from one side of my hip instead of both. But, the nurse could tell I was still nervous so she gave me something to “relax.” It really wasn’t as bad as my first biopsy that I did with only local anesthesia. I still cried and screamed, but not as much. Diana was in the room the whole time, too. So that was comforting. Now, I’m just sore and it still hurts where they stabbed me. Not too bad though.

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After that, I had another pulmonary function test. Those are so tiring. Breathing is difficult. But, they said everything looks good. I had to get my brain CT after that at a different office. So, Diana dropped me off there. I already had an IV from my biopsy so I didn’t have to get stuck again for the CT. I fell asleep in the machine again. But, it was quick.

My sorority sister/syands, Christine, picked me up from my CT scan since she works nearby. We had some time to kill so we grabbed some coffee and cookies. Coffee was much needed since I woke up so early. And, the cookies were so good. They had so many flavors! I wish I could have tried them all.  Christine dropped me off back at the transplant center for my last couple appointments.

I went to the Atlanta Blood Services office. They went over the importance of platelet donation for stem cell transplant patients. So, if you want to help me out, go donate platelets! I’m going to need them. Since I’m technically a blood donor for myself through this autologous transplant, I had to do all the donor questionnaire stuff that you usually do for regular blood donations. That was a pretty quick meeting and then Justin met me when I was done.

Some more info on platelet donation: Platelet Information Flyer

We went across the hall back to the transplant office to meet with the health psychologist. She just went over typical questions to make sure I was mentally ready and stable… I guess? But, that was my last appointment and I was so ready to go home.

With Atlanta traffic, we eventually made it home around 3 PM. All I wanted to do was lay in bed. So that’s what I did while Justin moved my furniture around to make sure I was comfortable.

So now my transplant is in motion. I have a day of patient education. I have to find some 24/7 caregivers. I have about a week of preparing my stem cells for extraction. I have to inject myself with this medicine called Neupogen. It gets the stem cells out of the bone marrow into your blood stream so that they can collect them through a process called aphaeresis.

Once I’m done with the Neupogen injections, they’ll place my catheter through my port. I won’t be able to drive after that. Then, they’ll start the collection process which can be 1-4 days depending on how many stem cells they’re able to collect. It’s like donating blood/platelets. They’ll take my blood out and cycle it through a machine that separates the stem cells out and puts the blood back into my body. My stem cells are frozen until I’m ready for my transplant.

After collection, I’ll have about a week of high-dose chemotherapy to kill any remaining cancer cells in my body. This is when I’m supposed to lose all of my hair and my immune system will be depleted. So, I should be feeling really crappy by the end of that.

My actual transplant day, which they call Day 0 (because you’re born again!), is scheduled for April 19. I’ll be admitted to the hospital that day. Since I don’t have a caregiver that can take me to the transplant center every day after the transplant, they’ll be keeping me in the hospital for 21 days. After that, they’ll only need me in the transplant center about every other day for follow ups.

I won’t be completely recovered for about 3 months after the transplant. Even though I’ll start feeling better way before that, my body will still be rebuilding it’s immune system so I’ll be highly susceptible to infection.

It’s a long road ahead but hopefully this is the end.

Want to help me? In birthday tradition, I’m fundraising for the LLS Light the Night Walk this year. My goal for the walk is $1,000. So you can donate and sign up to walk with my team. The walk this year is October 8.

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My GoFundMe for my medical expenses is also still active. With this transplant coming up, things are going to get crazy. So if you want to give me a birthday present, you can help me pay my bills! That would be much appreciated.

Also, don’t forget to go donate your platelets! The Atlanta Blood Services office has two donation locations. If you donate on my behalf, then I’ll have first dibs on your platelets. You’ll literally be saving my life. That would be a great birthday present! And if I don’t need your platelets, you’ll still be saving someone else’s life. There’s a shortage right now. It’s your time to step up and be a hero for someone!

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I’ll be pretty busy up until transplant day. Hopefully, I’ll be able to keep you all updated. Things are moving now. Let’s hope this is it.

~SL

A Month Later…

Wow. So I’m super behind. I think I’m getting tired of writing because I never have any good news.

I started my third chemotherapy regimen of Brentuximab on February 1. It’s not as bad as ICE. I only have to do it once a week every three weeks. It’s actually only a 30 minute infusion. But, they have to knock me out with Benadryl to administer it. I end up passing out for 3-4 hours.

My oncologist called Brentuximab the Hodgkins Lymphoma miracle drug. Well… why didn’t I get that first?! Apparently, they only use it when everything else has failed. Most commonly it’s been used in patients who have had autologous transplants that have failed. I was wondering why I started it before I even got my transplant. My doctors said they just wanted to get the tumors as small as possible before starting the transplant.

Brentuximab is also the drug they use for maintenance therapy after a patient is in remission to prevent relapse. So I’ll probably be on it for a while. My oncologist also said that they’re looking into making it more of a front line drug and that “it could change the landscape of Hodgkins.” So I guess I’m just a guinea pig.

The side effects aren’t too bad. I still get the usual nausea and fatigue. I really wish I could just throw up. I don’t know if that would make me feel better at all but seems like it’d be better than just gagging all the time. I could get 12 hours of sleep and then take a nap two hours later. Why am I so tired?! I can barely do anything.

I had my second Brentuximab treatment this past Monday. I’ll have a third one on March 14, a PET scan on March 21 (if my insurance lets me), and then I’ll get the results on March 28. So we’ll see what happens. I really don’t think anyone, including my doctors, knows what’s going on.

It’s very frustrating and I don’t want to think about it anymore. I feel like I can’t live my life. I just want to make plans and do things like a normal person. But, I can’t because I might have chemo or they might decide to start my transplant. Who knows?!

As I mentioned in a previous post, I was honored at an LLS fundraising event at the beginning of the month. It was pretty fun. It was held at the College Football Hall of Fame in Atlanta. Justin and Kelsey came with me. The museum is very interactive so we were just running around doing all of the interactive exhibit stuff. The event ended up raising over $5,000!

Circle of Hope at the LLS Fundraising Event.

Circle of Hope at the LLS Fundraising Event.

Kelsey, me, and Justin. It was a Princess and Pirates theme so Kelsey is dressed like a pirate.

Kelsey, me, and Justin. It was a Princess and Pirates theme so Kelsey is dressed like a pirate. I was a princess. Justin was himself.

We also celebrated Chinese New Year at the beginning of the month. Then, there was Valentine’s Day. A free brunch. And more chemo.

Chinese New Year dragon dance.

Chinese New Year dragon dance.

Me and Justin at the Atlanta Symphony for Valentine's Day.

Me and Justin at the Atlanta Symphony for Valentine’s Day.

Free brunch courtesy of Dinh's bonus.

Free brunch with the crew courtesy of Dinh’s bonus.

That pretty much wraps up the month for me. I know there’s a week left. But, I probably won’t be doing much. Hopefully, I’ll have some better news in my next post. I’m just… really tired…

~SL