Pause

Bad news. My PET results were not what we had expected. I was supposed to see my transplant doctor on July 3. But, the results were so bad that he just decided to call me to discuss them. The lymph nodes in my stomach are enlarged again and they seem to be very active on the PET scan. So we can’t go through with the transplant just yet.

He wants to do two cycles of another chemotherapy regimen of Gemzar and Bendamustine. I don’t know how long that will take. I think I may lose my hair again. He has to discuss the plan with my regular oncologist to see when to start up the new treatment, etc. I guess this explains why I’ve been having so much abdominal pain and I haven’t had an appetite.

Since the end of April, I’ve probably been to the ER ten times. I spent a week in the hospital. Don’t tell my parents! They’ll overreact and make me move in with them or something. I feel like I’m just poisoning my body with more and more drugs and nothing is working. It’s really frustrating. Every time I get a little glimpse of good news, it’s followed with something worse.

I don’t mean to sound pessimistic or negative, but Hodgkins is supposed to be relatively easy to cure. But, somehow mine is so stubborn that nothing is working. I think we should all prepare ourselves for the worst case scenario. I’ve accepted the fact that I may die sooner than I’d like. It’s not that I’m giving up, but I’m just being realistic here and looking at the statistics. I’m so tired. I wish I could just take a break and come back. Could we just put all of this on pause for a little bit so that I can breathe a little easier? Just for one day. That would be a dream.

I’d like to be cremated. No need for me to take up space in the ground. Put my ashes into a firework and let me light up the night sky over the ocean. Play “Dog Days Are Over” by Florence and the Machine at my celebration of life. No black clothing. Do NOT play “If I Die Young.” So cliche. I think those are my only requests that I can think of so far. I’m just putting this information out there because I want you all to be prepared. Better to know what to do.

In other news, Northside Hospital chose me as one of 4 survivors to represent them at their cancer survivor celebration at the Atlanta Braves game this past Saturday. I got to be in front of the pack during the pre-game survivor parade around the field. Then, I got to go onto the field during the special presentation. They had me on the big screen with my name and everything! It was pretty cool.

My 10 year high school reunion was this past weekend. I couldn’t make it but they gave me the 10 year superlative of “Most Likely to Kick Cancer’s Ass.” That was pretty sweet of them.

My sister came to visit this past weekend too. We didn’t do anything too exciting, but she got to see my house and where I live. She was able to see me at the Braves game too. It was a short trip, but well worth the time. We had fun.

I have my first physical therapy appointment today. I had my consult last week. It should help me with my pain and keeping my strength up. I hope it helps.

This was a quick post. Slightly depressing, but realistic. I promised to keep everyone in the loop so that’s what’s going on.

Maybe my next post will be a little more upbeat.

~SL

Give Me Strength

Today has been by far the worst day of this 2+ year battle with cancer. I have been struggling with extreme side effects from this pre-transplant treatment of Rituxan and Revlimid. I may have mentioned before, but I’ll repeat myself for those who haven’t read my recent(ish) posts. Rituxan is an infusion that I get once a month. Revlimid is a chemo pill that I take for 21 days straight with one week off in between cycles. It’s not a typical treatment for Hodgkin’s patients so there’s not much research about the side effects specifically for Hodgkin’s.

I have been in so much pain. I came home from work one day unable to walk or move at all. I refused to go to the hospital so I just took as many painkillers as a could and went to bed. But now, I wake up in the middle of the night crying because everything hurts so much. My first ER visit within this month was because I woke up in the middle of the night in excruciating pain. It felt like someone was crushing all of the bones in my legs. I couldn’t walk at all. Justin had to carry me to the car basically and immediately get a wheelchair when we got to the ER. Of course, no one at the hospital knew what to do. My history is complicated so that’s understandable. He called my oncologist’s office to talk to the on-call doctor. She said to call when they open the next day to get an emergency appointment. They gave me more medications and discharged me.

I had already told her my legs had been hurting for a while now but she just said it was a side effect of the new chemo and it would get better after my body got used to it. There was just some hardening on my L 1 vertebrae from radiation.

When I got to their office the next morning, no one knew why. She had me get an MRI to see if there was something they were missing. But, it came back fine. So we just kept going with the treatment. The pain just got worse and worse. Then, they ordered a PET scan to check if the cancer had spread.

At my next infusion, the LPN said that my PET results were good but not much else. I told her I was still having pain. My white blood cell count also came back very low. I was still able to get my Rituxan infusion, but she said to take an extra off week for the Revlimid.

Just filling the Revlimid was a pain. You have to be registered with Celgene, the only company that makes the drug. 21 pills costs around $30,000. I had to call my mail order pharmacy with only 30 minutes to spare to get my pills in time after a runaround with authorization codes anyway. I finally got my 20 mg pills scheduled for delivery in time for my next cycle. But since my oncologist decided to change my dosage to 10 mg, I have to go through the entire process again. My LPN sent the prescription to a Publix pharmacy nowhere near where I live. When I got that corrected, they called to tell me that they’re not part of the Celgene program so they can’t dispense the medication anyway. I called Celgene and they’re not even sure the insurance company will pay for this one because I just got it filled and they can’t take medications back.

Last night, I woke up again in pain. This time it was all in my back, pelvis, stomach, and sides. I had tightness in my chest. I threw up twice. It didn’t feel right at all. So I woke up Justin to go to the ER. They did a chest x-ray and a CT. Everything came back fine. They gave me some potassium, prescribed me some more pain medications and anti-nausea medications and discharged me. I decided to go to work because I was just going to a training today. I was struggling to stay awake. I wish I could tattoo my forehead with, “Please don’t judge me. I have cancer.”

I feel like a giant burden on everyone: my family, my friends, Kelsey, Justin. I feel like people are tired of me complaining about cancer. It’s so hard. I know I’m saying I’m tired all the time, but this is just too much. Just waking up in the morning is such a challenge. I feel like I’m not myself anymore. I can’t do any of the things I used to love. I can barely walk. I try to stay positive and not allow it to affect my work and relationships, but it’s so hard. I just cried so much today.

What kind of life is this? How do people do this with kids? Why won’t the doctors just listen to my complaints the first time? I feel like they’re not listening to me. I don’t want to do this anymore. I want to live a normal life. Even after this is all over, there’s so much more that could happen. It’s hard not to think about. This will never end for me. I just want to live my life.

People keep calling me a hero. I’m not a hero. I’m not a fighter. I’m just trying to hold on. I’ve accepted that I may not make it. I hope other people will too. I’m not saying that I’m giving up. But, sometimes there are other plans in your future. But, I will keep going. I know that the more I endure means less for someone else.

Two years. I have had cancer for two years when my first oncologist told me it would take 6 months to cure. I want this to be over so badly. I want my life back. It’s getting harder and harder to put a smile on every day. I just need some good news that’s not immediately followed by bad news. I need something. I need anything. I can’t live like this anymore. It’s so hard. I just couldn’t be happy today.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

~SL

Spring Awakening

So it’s been quite a while since my last post. A lot of people have been asking me about it. I have been exhausted lately, but that’s nothing new. As this journey goes on, I feel like it gets harder and harder to write about. It seems like every time I get a bit of good news, it doesn’t last long. But, let’s see what’s happened since December.

We found out that my sister is a perfect match for my stem cell transplant! There was only a 25% chance that she would be a perfect match because… genetics. So we were all really surprised about that.

I started my new treatment of Rituxan and Revlimid. Rituxan is an infusion that I get every 4 weeks. It takes a while to infuse because the rates have to be slowly increased over every 30 minutes. My first treatment took a little over 4 hours. It’s a lot rougher than the brentuximab. The side effects are still the same. Nausea, fatigue, etc. It’s just a little more this time around.

The Revlimid is a daily chemo pill. I take it for 21 days and then I’m off for a week. It’s mostly been used in non-hodgkins patients so the side effects for hodgkins aren’t really known. But, I’m sure they’re similar.

I developed a really bad cough after I started this treatment. It is a side effect of the Revlimid. When I went to see my transplant doctor this past Monday, he sent me to radiology for some chest x-rays. It turns out that I have pneumonia. So now I’m just stuck at home resting.

Right before I started this new treatment, I got word that my grandmother had a very serious stroke. Justin and I flew to New York the next day. They took her off life support that Saturday around 3:30 PM. Justin and I weren’t going to land until Saturday night at 11:15 PM. The doctor told my mother that my grandma wouldn’t make it until then. We finally landed and I heard from my cousin that my grandma was still hanging on. They said she was waiting to see me. My uncle said the day before she had the stroke, she was talking about how she was excited for me to visit in April and how she wanted to meet Justin. I guess she hung on long enough to see us. She finally passed on Sunday afternoon, despite the doctor saying she would only last a few hours after they removed the ventilator. We held her funeral and burial on Tuesday.

 

She has been ready to go for a while. We all knew it was coming. I’m glad she could finally be at peace now. But, I’ll miss her so much. It was nice to be around family. There’s so many new babies and everyone finally got to meet Justin. I think he was a big hit. I’m sure grandma would have loved him too.

Justin and I moved into our new home in February. It’s been great. We’ve had a few people over here and there. We’ve still got some organizing and unpacking to do. But, it definitely feels like home already. Our pups love the backyard and they get to run around a lot more. Our neighborhood is nice and quiet. We’re having an official housewarming in a couple weeks. I only have pictures I took at our inspection back in December.

Other than that, things have pretty much been the same. I’m just trying to take it easy and rest as much as I can. Things are still moving. I’m just getting frustrated with all the treatment and everything. It gets tiring. So that’s all… we’ll see how long it takes for another update. Thanks for checking in!

~SL

Do You Remember?

I’ve been very reluctant to write anything lately. I have been in this fight for nearly a year and eight months now. I’m tired. I’m done. I also lost my username/password for a little bit. But, I remembered it!

These past couple months have been an emotional rollercoaster for me. But, like I always do, I just put a smile on my face and laugh it off. Honestly, I don’t know how much longer I can do that for. I feel like everyone is over it. I’m tired and everyone else is tired of me talking about it. Do you remember? Remember the beginning? 20 months ago. It’s a long time to pass. A long time for people to forget. Day 598 is just as tough as day 1.

I had a great turnout for my speech at the Atlanta Light the Night Walk back in October. I spoke to 20,000(ish) people about my journey. I had a great team and we raised over $3,000. I had a CT scan and the results were actually good this time around. All my tumors had shrunk as opposed to my previous scans that had mixed responses. I’d never gotten good scan results before. It finally felt like something was going right.

Team Remedy for Remedi 2016

 

I spent a nice Thanksgiving in Indiana with Justin and his family. I got to shoot a bow and arrow for the first time. I had a delicious Friendsgiving and lots of fun Christmas festivities so far. Justin and I picked out my first real, live Christmas tree. We made our first Christmas card. If I asked for your address and you were reluctant to give it to me, you missed out.

 

First time shooting!

 

Our REAL Christmas tree!

 

Christmas party with the gang.

Despite my hesitation, the few people who are still involved in my fight urged me to get a second opinion at Emory. So, I did. The doctor’s recommendations shattered my hopes a bit. But, I’m glad I went so I could hear another perspective. He had a suspicion that my cancer was still progressing even though my tumors had gotten smaller. Based on my history and how my disease progresses, it was possible that the brentuximab could be making the cells smaller, but they could still be growing at an aggressive rate. He called me a high risk patient because of my refractory lymphoma. He gave me some options that day. The first was to do some more chemo and then an allogeneic stem cell transplant with a donor. My sister has a 25% chance of being an HLA match for the donation. My parents would be a half match. The second option was to do a new drug that had little research and would ultimately eliminate any chance I would have of ever being able to do a transplant because of the increased risk of graft vs. host disease. I think there was a third option but I guess that one really didn’t seem appealing to me if I can’t remember it now. He said even with the transplant, I only have a 30% chance of remission.

Do you remember? The beginning. My first oncologist said, “If you were to get any type of cancer, this is the one you want.” He assured me that Hodgkins was highly curable and I had a 90% chance of survival. 598 days later… I am down to my last 30%. Well, I guess if you look at it, I really am beating the odds… since the odds were in favor of me surviving.

I got a PET scan because he wanted to confirm his suspicions of the aggressive activity in my cancer cells. CT scans show geography, size, the surface. PET scans show you what’s really going on inside. I went back to see him yesterday expecting a bad scan. But, to everyone’s surprise, it was relatively good. What?! How am I supposed to feel!? I’m so confused.

My PET scan showed that the activity and growth of the remaining tumors was actually a lot less than they had been previously. But, that doesn’t necessarily mean that the brentuximab is working. Again, since I am a high risk patient with a disease that does not respond typically to treatments, my current regimen could just be keeping the cancer at bay, not giving a good shot at remission or at least one that will last. So he gave me the same two options with a little bit of good news. Since my cancer cells aren’t as active as he had thought, this gives us more time to find a donor.

But, do you remember? About two or three years ago, Nina Louie was looking for a donor. But, the bone marrow donor registry lacks minority donors. Since transplant matches are dependent on your HLA match, race and ethnicity play a large role in finding a donor. Her sorority was able to get thousands and thousands of people registered, but she still couldn’t find a match through the registry. Thankfully, her life was saved by a miraculous cord blood donation and from what I gather, her and her family are doing well today. Can you imagine that though? Her doctor told her they would have to get 20,000 people registered to even have a chance at finding one match.

So here I sit, 598 days after diagnosis with a 30% chance of remission. I’m going to keep fighting until I’m at 0% (or 100%… that’d be better, right?!). I’m going to do it with a smile on my face… most days, probably not today, but most other days.  I will tell you waking up on day 598 is a lot harder than day 1. But, you can’t expect people to stick around that long, can you? You can say I’m being dramatic, but I don’t care. There is a difference. There is a bittersweet pain. I will be forever grateful for the people who have been there for me through donations, gifts, text messages, cards, food, fundraisers, hospital visits, etc. But, I will never be able to repay the ones who have been there since day 1 until day 598. Those people, and they know who they are, are my heroes.

I’ve changed a lot since I heard those three words, “You have cancer.” Part of me mourns the person I used to be. Bubbly and energetic. Always optimistic. But another part of me is happy with the way cancer has shaped my point of view. Even though I’m exhausted, I don’t let life pass me by because it could be gone in a moment. I let people know how I feel. I spread the love wherever I can because one day, I might not be able to anymore. Imagine how awful that would be.

People say the holidays are a rough time. So I hope you remember – everything you have to be thankful for. The people you love. The people who love you. If you were to die tomorrow, would you be happy with the life you’ve led? The things you’ve done? The things you’ve said? I think about that every single day.

This was a random, emotional blog post. It may not make any sense, but I think it was long overdue. I can’t leave you all without one last call to action. Give this holiday season. Even if it doesn’t help me, it will help someone. Atlanta Blood Services is in a constant platelet shortage. As some of you may recall, platelets are essential in stem cell transplants for recovery. You can also join the national bone marrow donor registry with a quick swab. Do it for me because I can’t donate myself. Do it for someone else because you could save their life. Do it for yourself because we are all capable of being heroes.

~SL

Busy September

Since Labor Day, I feel like I’ve been so busy. I spent the two weeks after we got back from Asheville packing up all of my stuff and moving it to Rome. I also had a lot to do for my parents. I think they were trying to get the most out of my unemployment before I moved out. I also tried to hang out with as many people as I could before I moved because I will probably be around less people now that I live farther away from the Metro Atlanta area.

I had my first day of work on September 16. It was just orientation. Lots of human resources stuff, going over policies, talking about insurance, etc. There were 4 of us that day, but I was the only one who was going to be working in the district office. The other 3 were also going to the clinical side of the public health department. I was the only one going into emergency preparedness (EP).

So I’ve been on the job for a week now. My first week felt really busy. Since I work in the district office, we provide support down to the county level. Our district oversees 10 counties. The only days I was in the office for the whole day were Monday and Friday. We went to Dalton, Cartersville, and somewhere else that I can’t remember. The team I work with on a regular basis is 5 people. We have the smallest department in the district, but they’re all really into food so it works out.

We have a giant EP truck. It’s a Ford F-350 Super Duty fully equipped with all the emergency sirens and lights. I eventually have to learn how to drive it… while also pulling a trailer. We’ll see how that goes since I can barely drive my Jeep.

I went to a Georgia Emergency Management and Homeland Security (GEMHSA) Area 1 meeting that had the Georgia State Patrol aviation demonstration. I went to an SNS (Strategic National Stockpile) training. Then, I went to an interstate emergency preparedness meeting between Georgia and Tennessee. Alabama was supposed to be there, but they’re pretty busy. It’s a lot of traveling, but I get to meet a lot of people. And I’ve been learning a lot! It’s crazy that I get to work in a field that I actually got my degree in and wanted to work in.

My boss is really supportive and encourages us to go out to do personal and professional development. So far, I’ve just been tagging along to everything I can so that I can learn everything about our district and meet a lot of other people in EP. My actually position is the training coordinator. So eventually I’ll be providing trainings for the district pertaining to different EP topics. I’m so glad I don’t have a job that’s just sitting behind a computer all day.

GSP Search and Rescue Aviation Demo

GSP Search and Rescue Aviation Demo

I’ve also been slowly decorating my office. Everyone knows how much I hate empty walls. I have no windows. So I have a lot of walls to decorate. Everyone in the office has been so nice and welcoming though. Sine it’s a public health office, they’re very into wellness. One of the execs even bought a bunch of bicycles and helmets for the staff to use on our wellness breaks. We’re right next to an abandoned hospital campus so there’s a lot of space to ride around and walk. There’s also Zumba classes twice a week. But, I’d probably pass out if I tried to do Zumba at this point.

Overall, it’s been going pretty well. I hope it only gets better from here!

I went to a young adult cancer meeting last weekend. A group of 5 of us met with the survivorship coordinator at Northside Hospital. We basically talked about our stories and what we liked and didn’t like about being treated at Northside. I was the only one with Hodgkin’s and who had gotten a stem cell transplant. She was very interested to hear more about my BMT experience since I told her I hated it. But, it was nice to get together with a group of young cancer survivors and just complain. The survivorship coordinator said she wants to build up a program to cater towards the unique needs of young cancer survivors. We don’t want to walk into a support group and just talk about writing wills and dying.

Young adult cancer survivors!

Young adult cancer survivors!

Other than that, I haven’t been up to much. The walk is less than two weeks away! I’m excited. I’ll be speaking at the opening ceremony this year. There’s still time to sign up for the walk!

Join our team to walk with us on October 8: https://registration.lightthenight.org/event-selected/44185/team-selected/432653

Can’t make the walk? Make a donation to our team here: http://pages.lightthenight.org/ga/Atlanta16/RemedyForRemedi

That’s all for now!

~SL

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