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

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 Standing Ovation

Last Friday, I had the pleasure of delivering my first survivor speech for LLS. It wasn’t a large crowd. I just gave a quick 3 minute speech about my experience at a private Christian school in Johns Creek called Mount Pisgah. I spoke to their Upper School, which is their high school. They’re beginning a fundraising campaign with an LLS program called Pennies for Patients so they wanted to hear from a survivor.

It was the first time I had talked about my experience. I really thought I was going to cry during the speech, which would have been bad because there’s no coming back once I start crying. But, I made it through pretty smoothly.

It was a casual assembly after lunch, that they call Fam Time, where they just make general announcements. So I was surprised that all of those teenagers were actually listening to me. They even gave me a standing ovation. That’s when I started crying. They close their Fam Time with a prayer and the girl who was doing the prayer dedicated it to me. It was so sweet!

I may be asked to do some more survivor speeches. I hope I can get away with using the same speech! But, it was a great experience. I got to brush off my public speaking skills. Everything I know, I learned from my brilliant high school speech teacher, Mrs. Millet. You would have been proud of me!

Anyway, since I shared my story with all of those teenagers, I thought I’d also share it here. But, you may hear it again if I’m asked to speak somewhere else. Also keep in mind that I was there for LLS, so there are LLS plugs in there.

Enjoy!

~SL

—–

April 28, 2015. That was the day my life changed forever. I was in my last semester of my Masters program at the University of Georgia. I had already missed a month of classes because of all of my doctor’s appointments, scans, and biopsies. At the same time, I was being kicked off of my parent’s insurance because I had just turned 26. Somehow, I still managed to walk across the stage at graduation two days after have my port placement surgery.

I was overwhelmed with all kinds of emotions. I was angry and resentful. I had been healthy my entire life. I had kale breakfast smoothies, did yoga, and ran a half marathon. While my classmates were getting ready to start new jobs, I was getting ready for chemo. I became extremely depressed. I tried to keep myself from asking why. I didn’t know what was going to happen or what to expect. My friends tried to help, but no one could really relate to what I was going through.

At the same time, I also felt extremely grateful. There was an outpouring of love and generosity from my friends, family, sorority sisters, and even from people I hadn’t talked to in years. I had a whole support team behind me. Although everything seemed like it was falling apart, it was actually coming together.

I once heard a quote. “The day you get a cancer diagnosis is the day you decide whether you will be a victim or a survivor.” Cancer has taught me so much about the resiliency of the human spirit and the human body. It has taught me to enjoy and appreciate every single person and moment in my life. It taught me to be a survivor.

Although my battle with Hodgkin’s Lymphoma is far from over, I continue to have hope. Not only because of the love I have been receiving from my friends, family, and even strangers, but also because of the support from organizations like the Leukemia and Lymphoma Society.

LLS uses the money you fundraise for life-saving research. Without LLS, I would not have such high odds for survival. The money you fundraise also helps LLS continue their other programs that help patients and caregivers cope with a cancer diagnosis. Their First Connection program allowed me to connect with other survivors and ask questions. The co-pay assistance program has also helped alleviate my financial burden.

After two failed chemotherapy regimens, my doctors have recommended a new drug, Brentuximab, a drug that was founded partially because of LLS research funding. So I thank you. The money you raise, no matter how much, will help improve the quality of life for cancer patients like me. I am living proof of that.

ICE + BMT

My lymph node biopsy last, last week went well. They did an ultrasound guided needle biopsy so I didn’t have to be put to sleep. The results came back and it’s still Hodgkin’s lymphoma. They wanted to make sure I didn’t end up forming another kind of cancer. Lucky me, still have just the one! They took the samples from the enlarged lymph node in my underarm. So, that was awkward. I could barely put on a jacket or anything afterward. But, that only lasted for a day or so. Not bad.

The next day, I had my consultation at the Bone and Marrow Transplant Center of Georgia. My best friend, Kelsey, came with me. She took notes and asked questions while I sat there in shock. It was a long appointment. Since it’s the winter time, everyone in the office has to wear masks. We met with an RN for about an hour to go over my entire health history. Then, I had a quick physical. Then, we met with the doctor. He’s the transplant specialist. He went through every single step of the process. He even explained better what Hodgkins is and how it spreads. After we talked to him, we talked to a coordinator who is in charge of basically getting all your shit together. She’s the one who works out your schedule and helps you find caregivers, etc.

So for those of you who have been asking me about what an autologous transplant is, here is the best I can describe it. The process begins with me getting these shots that make my body produce more stem cells and lure them out of my bone marrow and into my blood stream. I think I do that for about a week. After that, I’ll have my stem cells harvested through a process called phoresis. They’ll take my blood and cycle it through some machine that sorts out the stem cells and puts the rest of the blood back in me. They’ll store and freeze my stem cells for later. The process takes a few days in order to get enough stem cells and I believe I’m in the hospital for this part.

Then, I’ll receive high-dose chemotherapy. The goal of this is to completely kill all remaining cancer cells and get me into remission. This also completely depletes my bone marrow and immune system so I’m in a highly vulnerable state at this point. Once everything is clear, they’ll transfuse the stem cells back into my blood. The stem cells have to “engraft” themselves to my bone marrow to begin building my immune system back up from scratch.

While I have no immune system, I’ll be put into isolation. This begins in the hospital and once engraftment happens, I can finish isolation at home. The safe period is 100 days. I’ll have to go to the transplant clinic pretty much every day for the first 30 days or so. Then, it’ll become less frequent… every other day. I’ll need a caregiver with me 24/7 in case anything happens to me like I get a fever or infection. The cancer center’s social worker is looking into transportation programs since I don’t have anyone who will be able to drive me into Atlanta for my appointments. I won’t be able to go into public places, eat raw foods (including fruits and vegetables), etc. But, hopefully, I will be done after that!

I’m not actually getting the transplant until next year. First, I’m starting second-line salvage ICE chemotherapy. This is what lucky patients like me get when first-line ABVD chemo doesn’t work! Yay! ICE is more toxic. My doctor tells me that the side effects will be worse and I will definitely lose ALL of my remaining hair, especially with the high-dose chemo during the transplant. But, they were pretty surprised with how much hair I still had at the end of ABVD. So, we’ll see.

ICE chemo is three consecutive days of infusion. The first day will be about 5 hours. Days 2 and 3 will be about 4 hours. Then, I will come back the next day for a Neulasta shot that is supposed to help keep my white blood cell counts up. I’ve heard really bad things about Neulasta. It makes people throw up and it makes your body hurt so much because it makes your bone marrow over produce white blood cells. Just more fun stuff to look forward to! I start ICE on December 14. I only have to do two treatments. So the next cycle will be 3 weeks after that. Then, we’ll wait a few weeks for the chemo to cycle through my body and start the transplant process.

I wanted to start a vlog series about going through the autologous transplant process because I haven’t been able to find many personal experiences about it. I’ve been connected with a few people who have had them though, so that helps. But, my computer is super slow and I keep getting these weird error messages. We’ll see how that project goes.

Other than all that cancer stuff, I had a nice Thanksgiving with my parents and my grandma at home. We had a small dinner and just hung out. I had a nice Friendsgiving the night before. So much food there! It sucks that my appetite is shot because I could have eaten so much more!

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I made way too many green beans. My mom hates green bean casserole so I just sautéed them with bacon and onions.

What else has happened? I got to go on a fancy lunch with the Leukemia and Lymphoma Society staff members who raised over $1,000 for the Light the Night Walk. We went to the SunDial. It was pretty cool. But, eating while you’re spinning around on top of a building is kind of nauseating.

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Peach lemonade + shrimp and grits + a 360 degree view of Atlanta

I also went to the Atlanta Symphony Orchestra with some friends for my line sister’s birthday. It was Star Wars + the best of John Williams night. There were a bunch of Star Wars characters walking around and you could take pictures with them. They played Star Wars music. But also, they played music from Harry Potter, Jaws, Indiana Jones, etc. It was amazing!

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Star Wars at the Symphony

I had a nice anniversary potluck dinner with my line sisters to celebrate 8 years since we joined this Everlasting Sisterhood. It’s so great to see my line sisters, even though we can never get all 13 together at once. We even hung up our banner and had a mini photo shoot. It was great. Again, so much food! I wanted to eat more!

We also had our sorority’s 17th anniversary. Some UGA alums got together for a lunch. We also had a toy drive for CHOA. That was really fun because you always see people you haven’t seen in a while. Everyone comes out for the big anniversary and it’s so nice to see everyone.

I suppose that’s it. I really want to do a lot of stuff before I start chemo again on Monday. I’m not sure how I’m going to react to this new chemo and then I’m going to start the transplant. So, I want to do everything! But, I’m so tired. I can barely go shopping for 2 hours. I just have so much physical pain and I get so tired. I had to cancel my New Year’s Eve trip to New York too. I’ve only been to New York once this year and it feels really weird. First world problems.

I also kind of can’t wait to start chemo again just so these crappy symptoms will go away. But, then I’ll get a whole new slew of crappy symptoms. It’s a lose-lose… but kind of a win-win? It’s weird.

As usual, positive thoughts and prayers are much appreciated. I’m really hoping this will be it. I’m tired and I just want to be done. Thank you to everyone who has been keeping up with me and my appointments. I’m sorry if I’ve been short with you. But, it gets overwhelming trying to explain everything to every single person all the time. And, honestly, it is really difficult to talk about. Please bear with my mood swings. But, I really do appreciate all of the support and love!

~SL

Hello?

It’s me. Haha. Thanks to Adele for that opening line. She’s been stuck in my head all day! Week… month…

Anyway… it has been quite a while since I have updated. I guess I have been pretty busy. Life has been non-stop recently. I don’t exactly know why because I’m unemployed and single. How can I be so busy? Also, I’m pretty high on oxycodone right now because I’m in so much pain… all the time. So if this post is weird… that’s just how it’s going to be.

Right when I got back from Minnesota, I went right into wedding mode for my friends, Michael and Amanda. It was an EPIC wedding, to say the least. I’m so glad I was a bridesmaid because I had such a great time with everyone. I even had a great time with the hours and hours of manual labor we did before the wedding. I’m super proud of my corn hole boards that I painted… free hand! But, it rained during the entire wedding, so no one used them. If I were to talk about all the amazing and crazy things that happened during the wedding, we’d be here all day.

My masterpiece!

My masterpiece!

The rain forced us to use this storage room as the bridal suite. So fancy.

The rain forced us to use this storage room as the bridal suite. So fancy.

After saying I do! They got to enjoy some married alone time in the storage room. Haha.

After saying I do! They got to enjoy some married alone time in the storage room. Haha.

But, it was seriously such a beautiful wedding. There was so much love. Amanda was such a chill bride the whole day, which was so great! Even when we found out that her foot had been bleeding and it got on her shoes and her dress. We all freaked out. But, she was just like, “Oh.” The groomsmen all got together and did a surprise dance for her. The bridesmaids joined in at the end. Michael made this sweet video that recapped their entire relationship from when they met. We partied so hard… and it was a Sunday. I’m a little sad that it’s over. I’ve known Amanda and Michael both for 8 years. I’ve seen their relationship from the very beginning and it was such an honor to stand up there with them as they said, “I do.” Even though, I was so cold and couldn’t feel anything, the only thing I could feel was the love. They are amazing people and the best friends a girl could ask for. Love you both!

Now, on to the next wedding. #gabeandpamgoham coming in April 2016!

I haven’t been doing much lately. Last time I went to my oncologist, my white blood cell counts were crazy. She’s worried about me getting sick so I have to be super careful and not be around people.

I also got my PET scan results back. I actually got the results the Monday after the wedding, November 9. So far, I have only told my family, my close friends, and people who have asked me about it. I feel like the more I say it out loud, the more real it becomes. I’ve been dreading writing this post. I hardly know what to say because I don’t even really know what’s happening exactly.

So my PET scan showed that the tumors have shrunk. However, there is still high activity in them. That means that the chemo shrunk the tumors down but didn’t stop whatever is making them grow. However, my oncologist didn’t really have much to compare the PET to because my insurance is crap and I wasn’t able to get a PET scan when I was first being diagnosed and staged. It kind of feels like we’re starting all over again.

I have another lymph node biopsy this upcoming Monday. Hopefully, the flow cytometry will give us better insight as to the current situation of what’s going on in these tumors. Then, on Tuesday, I have a consultation with a bone marrow transplant center. Well, I guess nowadays, they’re calling it a stem cell transplant. My oncologist suggested that the next step be an autologous stem cell transplant. This is where they take my stem cells and freeze them. After that, I get high dose chemo or total body irradiation where the goal is to completely get rid of the cancer. They do this after they take the stem cells because the high dose kills everything, even the good bone marrow. After that, they’re able to put the stem cells back into my body so that it can start making healthy blood and bone marrow again. During recovery, I’m highly susceptible to infection so I’ll probably be in isolation. The transplant can be done completely as an outpatient procedure or I’ll be in the hospital during the entire process.

So this is not exactly what we thought was going to happen. And it’s not what most commonly happens with Hodgkins lymphoma patients. I guess my body was so healthy before, it just really wanted a challenge!

I’m talking to a couple of people who have had an autologous transplant. It doesn’t seem like a painful process or anything. It just takes a while to complete. I just want to do whatever it takes to get rid of this cancer for good. And I want to do it as soon as possible. Mostly because my deductible restarts in January. So if I need to be hospitalized, I’d rather do it now, while I don’t have to pay anything anymore.

So that’s what’s happening. I will update more on the transplant stuff after my consultation.

Thanks to everyone who has been checking in on me. The fight isn’t over yet. But, we’re a step closer.

~SL

Post-Chemo Life

I have not updated in a long time. It feels like nothing has been happening. But, at the same time, a lot has happened.

The weekend after my last chemo, I was in my friends’ Vietnamese wedding ceremony. I was feeling better than I usually do right after chemo. I think because I knew it was my last one. It was still a very long day. But, it was a lot of fun. We had the tea ceremony in the morning, lunch at the groom’s parent’s house, bridal party photos, and the reception. By the reception, I could barely keep my eyes open. I ended up slipping on something at the end of the night and landing right on my butt. I was sore for days. Overall, it was a beautiful day. Even though we were confused as to what everyone was supposed to do, I think it turned out well. Their American wedding ceremony is this weekend. I’m so excited!

The Tuesday after the Vietnamese wedding, I flew to Minnesota. It was my first trip after chemo. I missed flying. A couple months ago, we found out that my foster grandmother had lung cancer. Everyone was taking turns going to Minnesota to see her. I hadn’t seen her since my cousin’s wedding last January and I hadn’t been to Minnesota since my last trip in 2010. I saw her that Wednesday at the hospice. She was very weak, but still talking. She told me my hair was so short that I looked like Adam Levine. But it was ok because he’s her favorite. She loved watching The Voice. I wonder what she thinks about Blake Shelton and Gwen Stefani dating now.

We went to the hospice again on Thursday to see her. My mother was able to call her and talk to her. My uncle was able to call and face time with her, as well. He scheduled his trip to Minnesota for Halloween weekend. Unfortunately, she passed away that Friday so he didn’t get to see her in person before she passed away.

My sister and I were able to overlap our trips for a couple days so I was able to spend some time with her. We stayed with my cousin, Lauren, in Minneapolis. Her apartment is in walking distance to a lot of stuff so that was nice to explore. We also went to St. Paul for a day, which I wouldn’t recommend. There isn’t much to do there. I guess most of the places to explore were in the skyway, which was confusing. But, it was nice spending time with my Minnesota family.

I spent the next week back in Georgia. There wasn’t too much going on. I came back to flowers and a ballon from the LLS office for completing chemo. I had my PET scan. I was chosen as an Honored Hero for one of the Leukemia and Lymphoma Society’s Team in Training teams. I went to their kick off meeting to speak. Basically, it helps them put a face to their fundraising efforts. But, it’s nice that they chose me.

My mom, grandma, and I flew back out to Minnesota on Halloween. A lot of my actual family members came into town for the service. And I got to meet the rest of my Minnesota family that I’ve never met before. We spent Halloween night at my Aunt Pam’s house. It was the first time I met my cousin’s newborn baby, Lyra! She is adorable.  On Sunday, we took our typical family trip to Target. It’s just what we do when we’re all together. It was especially fitting since Target HQ is in Minneapolis. We had a giant family lunch at a pho restaurant before the visitation. We spent another night with a bunch of family at Aunt Pam and Uncle Brad’s house.

My sister, my three cousins, and I were staying at Lauren’s apartment again. We walked to a nice restaurant for breakfast on Monday before the celebration of life for Grandma Donna. The service was so beautiful. It was amazing to see Grandma Donna’s family along with all of the people she helped. She saved our lives. That was everyone’s story. Donna saved my life.

She was the one who sponsored my mother’s family into America so they could have a better life. That included my two grandparents, their 8 children, and 2 grandchildren. Even after they were all assimilated and on their feet, she and Grandpa Pete took in 5 more Vietnamese boys. They were unaccompanied minors and needed to be sponsored into the country, as well. Even after that she adopted two Native American boys and helped an African American man get on his feet. She treated everyone like her own children. She even took my mom on a trip to the Bahamas as a high school graduation gift. She kept all of the cards I made her from elementary school. She would send everyone news clippings that she knew would be of some interest to us. She sent me cards all the time. She was the most caring, giving person I knew. She was my hero. If she didn’t have such a big heart, I wouldn’t even exist today.

It was strange being around so much family, but without her. She would have loved it though. She loved being around family and having lots of people around. She was still so sharp mentally. It’s sad how your mind can still be there, but your body breaks down. It’s either that or the other way around. On Wednesday in hospice, we asked her what day it was. She said we were trying to trick her but she knew it was Wednesday because she had watched The Voice on Monday and Tuesday. She was stubborn. She even told the hospice nurse, “I don’t think so,” when she told her she was dying. We tried to take her watch off. But, she said she never took off her watch because my uncle gave it to her. She continues to give, even in her death. She donated her body to science. She really keeps giving until she can’t anymore. She was the greatest.

The whole family Grandma Donna created. Henningsens + Nghes.

Grandma Donna’s foster children and grandchildren.

My sister, mom, grandma, and me.

Grandma Donna <3

I feel like this whole post has been me rambling on and on about my Grandma Donna. I can’t believe she’s gone. I wish I had gotten to see her sooner. I wish we had lived closer so that I could have seen her more often. I miss her.

I guess that’s been the gist of what I have been up to since I’ve finished chemo. I don’t get my PET scan results until Monday. But, I will let you all know what the next steps are. Fingers crossed for good results!

~SL

Round 12

Today was my last chemo! Hopefully… fingers crossed. I have a PET scan in two weeks and we’ll see what the next steps are from there. Everything went smoothly today. The usual 4 hours. I got a special sign hung on my IV pole so everyone knew it was my last day. I kind of felt bad, like I was flaunting it in front of everyone else.

All of my friends, sisters, and family have been so awesome today sharing their support for me. Thanks to everyone who has been posting pictures and sending me messages. My running buddy, Hudson, even wore his Remedy for Remedi shirt underneath his work clothes today.

When I left, one of the infusion nurses put on a crown, got a wand, and sprinkled me with good luck. Haha. They’re so funny.

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I know I posted my post-chemo bucket list a couple days ago. But, those are things I want to do. I still can’t wait for a lot of things. Most obviously, I can’t wait to have my hair grow out again. I can’t wait for my skin to not be so dry and crackly and nasty. For my nails to go back to a non-rotting color. For my mouth not to be dry anymore. For my body not to ache all day and everyday. To be able to walk up the stairs without getting short of breath. To not be stabbed in the chest anymore to access my port. And… so much more that I can’t remember at the moment. Oh! That’s another thing. I can’t wait for to have a working memory again. Goodbye, chemo brain!

Everyone keeps asking me if I’m going to celebrate tonight. I wish I could! I feel pretty good, relative to how I usually feel after chemo. Every time you leave chemo, you have to get your vitals taken a second time to make sure the meds aren’t reacting all crazy in your body. The nurse said my heart rate was high. It was around 107. I was like, “Oh. Maybe because I’m super excited about being done!” Haha.

Here are some of the pics everyone shared in my honor today! It really gets me through the day. Thanks again to everyone today who posted pictures, sent me messages, and sent me good vibes. It really helped me get through the day.

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My cousin posted this pic of us after I made the collages below. She’s the baby. I’m kissing her. Hehe.

Everyone wearing their Remedy for Remedi shirts today!

I’ve been so blessed to have such a large support system! You guys are the real MVPs! Love you all! I’ll be needing those positive vibes again for my PET scan on October 29. Fingers crossed!

~SL

Light The Night 2015

Last night, my team and I participated in our first Light the Night Walk for the Leukemia & Lymphoma Society. It was a little hectic since it was everyone’s first time. There was probably 5 minutes of a good pouring of rain, but luckily, that was it. I don’t know why, but I’m always surprised by the amount of people who show up to support me. And I know that if my line sister’s bachelorette wasn’t the same weekend, I’d probably have 10 more people there. But, they even sent me a message and wore their team shirts while in Vegas. So sweet!

There were so many people at the walk. It was so beautiful seeing all of the lit lanterns when the sun went down. Survivors, like myself, walked with white lanterns. Those walking in support of someone, like my entire team, had red lanterns. Those walking in remembrance of someone held yellow lanterns.

The walk itself was a 2 mile loop around downtown Atlanta. I thought I could make it. But, I am so weak now. I got so tired and sick near the end. My nausea was acting up and I felt like I was going to pass out. So, we had to take a 5 minute break before actually crossing the finish line.

My team ended up raising $2,335! If you still want to donate, you can. Thank you to all of my donors and my team who was able to walk with me last night. It was amazing! I also finally got to meet Kristi, the survivor who has been my mentor throughout my entire treatment.

I really want to make this an annual event. I think it’s a great way to raise money for blood cancer research. It’s also a really touching way to actually visualize the impact that blood cancers have on everyone around you. Seeing all of those yellow lanterns light up in remembrance of someone who has lost their fight to cancer is very impactful.

Here are some pictures of my team. People were showing up at different times. So, we took 3 team pictures. Hopefully, I was able to catch everyone.

~SL

Round 11

So I have been slacking on the updates. I blame Scandal. I binge watched it all the way from the beginning. Anyway…

These past couple weeks, I’ve been really focusing on fundraising for the LLS Light the Night Walk. My team is doing pretty well. I’m only $80 away from reaching my own personal goal. There’s still time to donate! Any amount is much appreciated! Our team was just recently moved under the LLS Georgia Chapter’s team fundraising page. I’m that great of a volunteer that they wanted my team to be under the corporate team.

My home chapter in Athens had a percentage night in Athens to raise money for the walk. I think they raise over $200… through burritos! Thanks, Chipotle! I also had a sorority sister in New Jersey shave her head in my honor and to raise awareness for blood cancers. She is so brave because you know how much hair means to a woman! Now, she is a rocking a beautiful bald head for me. I feel bad because she lives in New Jersey/New York and it’s getting cold now. But, she’s awesome! Thanks, Sapphire!

I’ve also been keeping busy with all of these wedding festivities. We had a rehearsal for the Vietnamese ceremony for my friends next weekend. This is the second tea ceremony I’ll be part of. But, the first one was for my cousin so I didn’t really have to do anything. I think it should be fun. I love weddings with different cultural traditions. It’ll be the weekend after chemo though. Hopefully, I can find the strength to make it through the day.

My dad finally got his last drain out. So he is drain free. He’s starting to eat more and gain more weight. He was down to 90 pounds at one point! Now, he’s doing great. Thanks to everyone who has been checking in on him.

Chemo #11 was ok. My oncologist said I’m still doing well. The plan is to wait a month after my last chemo (October 15), do a PET scan, and see what our next step will be. So my PET scan will be the week before Thanksgiving. From what I’ve heard from other survivors, it seems likely that I’ll be starting radiation around Thanksgiving. I’m really hoping I don’t have to do anymore chemo. Recovery is getting worse and worse. I used to feel fine after 2-3 days. Now, it takes almost a whole week before I don’t feel sick anymore. But, I still feel really tired all the time. Food is gross too. Everything tastes weird. One day, I hardly ate anything because it all tasted gross and made me so nauseous.

My oncologist cleared me to travel after my last chemo. So, obviously, I went home and booked a flight. Can’t wait to go to Minnesota and see everyone again! And, of course, I’ll be going to New York for New Year’s. I usually go to New York about 4 times a year. I’ve only been once this year. I’ve been deprived! #firstworldproblems. I can’t wait to travel again!

I had lunch with one of my old bookstore co-workers yesterday. He gave me an awesome tervis tumbler with the HL ribbon on it. Thanks, Chad! I also had dinner with a sorority sister. Yummy tacos in Smyrna at Taqueria el Guero. You know a taco place is legit when they have beef tongue. Yum. Thanks, ECKO!

I feel like everyone is going to Vegas this weekend. My line sister is having her bachelorette party. I wish I could join in on the fun. But, I hope everyone has a good time for me!

Tomorrow, I’ll be volunteering in the morning at TEA Walk. Then, the Light the Night Walk that night. It’ll be a busy day. I got the shirts for my team. They look great! Hopefully, it won’t rain though. Fingers crossed.

I’ve been slacking with taking pictures. My phone is filled with wedding dress pictures from dress shopping with my friend. But, here’s a shot of our rehearsal. Also, a picture of my cousin’s newborn, Lyra. She’s so cute! Everyone loves an Asian baby.

Vietnamese tea ceremony rehearsal. Everyone is confused…

Baby Lyra! Isn’t she adorable!?

~SL