Day 54+

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

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

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

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

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

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

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

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

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

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

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

Avery Carter Kish

Avery Carter Kish

~SL

My Stem Cell Transplant

This is going to be a long post.

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

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

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

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

 

Pre-transplant prayer.

Pre-transplant prayer.

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

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

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

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

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

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

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

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

One arm. Two IVs.

One arm. Two IVs.

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

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

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

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

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

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

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

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

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

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

~SL

Mobilization

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

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

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

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

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

At the Grammy Exhibit at the Musicians Hall of Fame.

At the Grammy Exhibit at the Musicians Hall of Fame.

My birthday Elvis dessert.

My birthday Elvis dessert.

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

The Grand Ole Opry!

The Grand Ole Opry!

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

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

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

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

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

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

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

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

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

My beautiful Rhos.

My beautiful Rhos.

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

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

Donate Today!

Donate Today!

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

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

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

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

~SL

The Ides of March

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

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

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

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

 

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

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

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

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

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

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

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

Some more info on platelet donation: Platelet Information Flyer

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

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

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

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

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

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

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

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

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

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

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

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

~SL

A Month Later…

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

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

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

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

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

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

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

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

Circle of Hope at the LLS Fundraising Event.

Circle of Hope at the LLS Fundraising Event.

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

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

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

Chinese New Year dragon dance.

Chinese New Year dragon dance.

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

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

Free brunch courtesy of Dinh's bonus.

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

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

~SL

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

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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.

Another Round

These past few weeks have been kind of crazy. At my follow up 2 weeks ago, my blood work showed that my hemoglobin was extremely low. I ended up getting a blood transfusion that week. I found out my blood type is AB+! The blood transfusion wasn’t too bad. I was at the hospital for 6 hours. But, my nurses were really nice. They were able to do it through my port, so I didn’t have to get stabbed in my arm. My hemoglobin is still low, below the normal range. But, I do feel a lot better. Hopefully, it stays up and I won’t have to do it again.

My parents and I went to the transplant center to meet with the coordinator. She went over the entire schedule with us. I don’t have a definite schedule yet. Everything is still up in the air as to when I’ll actually be starting my transplant. I got a huge binder of materials and a book that I’m supposed to read through though.

Me and my parents at the transplant center.

Me and my parents at the transplant center.

I hosted my line sister, Pam’s, bridal shower last weekend. It was a little crazy because Georgia got an inch of snow and everyone was freaking out. But, we had a great turn out and everything was amazing! She said she had a great time so we accomplished our mission.

Everyone at Pam's Bridal Shower!

Everyone at Pam’s Bridal Shower!

I was supposed to have my PET scan last Friday. I had already been injected with the radioactive dye and drank the barium. I was in the machine and it ended up breaking. The technician tried to restart the computer twice but it just wasn’t working. After 5 hours at the hospital, I left with no PET scan. I was rescheduled for this Monday and got my results when I saw my oncologist on Tuesday.

The PET showed mixed results from my last round of ICE chemo. The lymph nodes in my neck and chest had decreased in size and activity. However, the lymph nodes in my abdomen and pelvis actually grew in size and intensity. So basically, it’s not working the way they had hoped.

Now, my oncologist and transplant doctor want me to start a third round of chemotherapy. This time I’ll be on Brentuximab. I have to do another 2-3 treatments. It’s only once a week every three weeks. But, this means that my transplant is now pushed back another 6-9 weeks. UGH.

I guess now I have more time to spend with everyone. But, I really just want to get this transplant over with. I want something to work. It feels like nothing is working. I would like to get some sort of good news after a scan.

Anyway… I’m being honored at an LLS fundraising event next week for anyone in the Atlanta area. I’d love for everyone to make it! You just have to donate to Wendi’s personal fundraising page to RSVP or you can buy your ticket at the door.

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Princess and Pirates Fundraising Event Invite

I suppose those are the big updates. I’ll be starting my first treatment on Brentuximab on Monday… hopefully, if my insurance cooperates. Let’s hope that it works. Fingers crossed.

Thanks to everyone who has made time for me these past few weeks. Spending time with everyone really helps me stay positive and keeps my mind off of all the crap. Love you all!

~SL

Recovery Recap

This week has been rough. However, compared to my first ICE treatment, I think it has gone a lot better. My doctor adjusted my pre-chemo anti-nausea meds so I didn’t get as sick this time around. By the third day of chemo, I was still feeling pretty horrible. They gave me the really strong stuff, Phenergan, on the third day of chemo and on my fourth day of fluids. I was knocked out the entire time. Phenergan is good because I just fall asleep the whole time. But, then I wake up all drowsy and disoriented. I go home and sleep for hours. It takes forever to wear off. And when it does, I just feel nauseous again. Plus, the neulasta shot burns so badly when they stick me with the needle. I guess that’s the trade off with the Phenergan. I’m so drowsy that I don’t feel the pain as much.

The bone pain from the neulasta shot kept me up last night. But, I just popped some pills when I woke up and it was manageable for the rest of the. I really think that bone marrow biopsy last time was a big part of my pain. Thank goodness I didn’t have any of that again. Bone marrow is still clean! I don’t know if I mentioned those results last time.

I had an awesome caregiver team this week. I totally forgot to bring lunch on my first, long day of treatment. Lucky that my best friend, Kelsey, came through and didn’t let me starve. And, of course, her mom took me home twice. My line sister, Holly, drove all the way from Lawrenceville and took a half day from work to take me home from treatment. I was feeling well enough to grab lunch with her and she even bought me cheesecake. Yum! My grandlittle, Jaleesa, and little, Tracy, took me to and from my fluids treatment right after Tracy got in from New York. Then, I got greeted by 3 more of my sorority sisters from UNCC after I got done with getting fluids (GGlil Pamela, Camarin, and Ann). I felt so bad because I was so drowsy from the Phenergan. They all wanted to get pictures with me. I felt like a celebrity! Definitely a lot of love this week.

I should be getting a PET scan in a couple weeks. If the tumors are small enough, I’ll be transferring my treatment over to the bone marrow transplant center. If they’re not down to a good size yet, I’ll have to do one more 5 hour ICE chemo session. I haven’t scheduled the PET scan yet, but fingers crossed!

I’ve already been bouncing back from treatment, which is surprising because it’s only been a few days. I think it’s really good because I’m keeping active. I slept a lot on Friday, probably 80% of the day. But, I went on a fun double date on Saturday night with Christine, JR, and Justin. Tacos, gummy bears, and Black Mirror. What more do you need for a fun, yet relaxing, night? Yay! Glad I got to see JR and Christine before they left for Vietnam!

I got to finally explore Ponce City Market today with Justin. I was a little tired and sore from the neulasta. But, walking around and getting fresh air makes me feel better. Good thing he was there to pull me up the stairs and keep me from falling. That’s always good. It was very windy, so we literally went into every store just to keep from freezing. PCM just reminded me of a wannabe Chelsea Market with a wannabe Eataly and everything. But, I guess that’s the New York City snob in me. Still a nice addition to Atlanta.

I wanted to end this post by asking everyone who is reading this to keep a new friend, Christina, in your thoughts and prayers tomorrow. I met her a while back in Athens when we were out with friends. She is also 26 and recently diagnosed with cancer. She begins her first chemo treatment tomorrow. She is so positive and so strong. Talking to her this past week has even given me the energy and strength to keep fighting. Her attitude is just amazing. Another young, cancer survivor beginning her battle and I’m so happy that we have found each other for support. So, please send her some positive vibes tomorrow. She already has such a massive support system behind her and seeing all the love just reminds me of how lucky I am to have my support system behind me, as well. Her hashtag is #IStandWithTeena or #WeStandWithTeena.

Until my PET scan, I don’t really have much happening. So there may be a lack of updates. But, you all will be the first to know once all the PET scan stuff happens! Thank you again to everyone who has been checking in with me and making sure I’m ok. I really couldn’t do it without all of you! Love, love, love <3

~SL

Post-Holiday Coma

Christmas and New Year’s went by so quickly this year. Maybe it was because it was like 80 degrees in Georgia. Christmas is always small with my family. I miss being in New York with the extended family. Now, everyone has babies and I’m missing out! We didn’t do much. I made my traditional Christmas morning breakfast for everyone. We opened presents. Then, we watched Inside Out, Divergent, and Insurgent. We refused to let my mother make us watch another Lifetime Christmas movie. My sister made a nice Christmas dinner and that was it. My mom took us shopping the next day because she didn’t actually get us any gifts. She claims she doesn’t know what to buy for us.

Christmas with the Family

I spent New Year’s Eve with my friends. We had a chili cook off. There were 5 competitors and a lot of food! I think we all wanted to take a nap afterwards. But, to make it to the countdown, we played a card game called Werewolf. It’s basically like a fancy version of Mafia. I didn’t make chili. But, I made a peach cobbler for the first time. I didn’t get to try it but I heard good reviews. After I got home, I spent some time on the phone with my drunk, long distance best friends. It was a good way to end the night.

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NYE with the gang

I spent these past couple off chemo weeks catching up with a lot of friends who were in town for the holidays. I’m so glad everyone was willing to make the trek to my side of town to hang out with me. I know I live kind of far from everyone. So thanks to Sunny, Hudson, Christian, Pam, Sean, Nicole, Josh, my Rhos, grandbiggie and family, my Doc Fam line, and Justin for spending time with me during my good weeks. Sorry if I missed anyone. It was a busy couple weeks.

My sister was also in town for a couple weeks. We did a lot of stuff. We went to another sip and stroke class, ate lots of sushi, hung out with her high school and college friends, went to the giant Sweet Hut in Duluth, and probably a lot more.

Our New Year's paintings.

Our New Year’s paintings.

She left on New Year’s Day and took my grandmother back to New York with her. Grandma has been having more dementia episodes lately. I literally had to pick her up on the side of the road one day. She left because she said she had to walk to some office so “the people” would take her to redo her dentures. She also threw a plastic bag of pine straw into the bushes before she would get into my car. Later when we got home, she was going crazy looking for that plastic bag because she said there was money in it. My sister and I went back to find the bag. It was just filled with pine straw. So, she’s back in New York with my family there for a while. I wonder if she’ll come up with different stories up there.

I start my second and final round of ICE chemotherapy tomorrow. I’ll have chemo on Tuesday, Wednesday, and Thursday. I’ll get my neulasta shot and probably some fluids on Friday. I hope this time will be better since I don’t have a bone marrow biopsy right after. I also hope that they’ve increased my pre-med anti-nausea meds so that I don’t feel so crappy.

My hair has begun to fall out so much more than the first time I did chemo. The entire left side of my head was basically bald because that’s the side I sleep on. I spent 30 minutes each morning lint rolling my pillows because the hair was everywhere. I didn’t even want to wash my hair because it just made a huge mess in the shower. So I finally gave in today and had my aunt shave my head. No more clean up! Now, I just need to get some more hats and maybe another wig, just because wigs are fun.

New year, new hairstyle. Or no hairstyle?

New year, new hairstyle. Or no hairstyle?

I’m so glad that 2015 is over. It was definitely a very difficult year for me and my family. Not only was I diagnosed with cancer, but my dad was in the hospital for 3 months, my foster grandmother passed away, and my mom was robbed at gun point at work. It has been crazy! But, there were also a lot of good things that happened. I got to see Alton Brown live, Kelly Clarkson, PTX, and Boyz II Men. I graduated from my MPA program. I saw two of my sorority sisters get married (one of which I got to be part of the bridal party). I ran my first 15K and half marathon. I still got to go to New York at least once for my spring break. I went to Minneapolis twice. I planned my last DPhiL National Convention. Despite all of the craziness, there were still a lot of great memories made. Best of all, I’m still alive. Still fighting, but still alive and that’s all that matters.

Happy New Year! Love you all!

~SL

The Most Excruciating Week

I finished my first round of ICE chemotherapy last week. It was not as bas as I thought it would be, but it was still pretty bad. I had chemo on Monday, Tuesday, and Wednesday. Monday was the longest day. I was at the cancer center for 6 hours. The next two days, I was only there for about 4-5 hours. I got really nauseous. It was the worst it’s ever been. They even gave me a barf bag just in case. I guess they didn’t realize that I would need more anti-nausea medication for 3 straight days of chemo.

I had to go in on Thursday for fluids since the chemo dehydrated me. I also got a Neulasta shot. It’s supposed to help when your white blood cell count drops. The normal range for white blood cells is something like a 4.8-10.8. Right now, mine is a 1.4. So I’m highly susceptible to getting sick and infections, etc. But, since the shot makes your bone marrow overproduce white blood cells, it makes your bones hurt. Your actual bones! And… it really hurts. On Thursday, they also realized how miserable I was with the nausea. So, they gave some extra strength stuff. It knocked me out for the whole two hours I was getting fluids. I literally woke up and felt like I was drunk. I didn’t know where I was. It was great.

My white blood cell count on Monday was unusually high, over 20. So, my oncologist wanted me to get a second bone marrow biopsy. They said they could do it in the office like I did the first time or I could go to the hospital. I definitely did not want to same experience as before. I went to the hospital on Friday to be sedated during my bone marrow biopsy. It was quick and definitely a lot less pain. But, I was still sore for a few days after the biopsy. The soreness from the biopsy plus the bone pain from the neulasta shot was unbearable. I could barely walk. I just didn’t want to move at all.

I had my follow up with my oncologist this past Tuesday. She says I’m doing well considering what I had just been through. I didn’t get my bone marrow biopsy results back yet though.

In non-cancer news, my sister is back in town for the holidays. We went to a really good Hawaiian/Asian fusion place in Marietta called Ronnie John’s Beach Cafe. It was so good and the people are so friendly. We also watched Sisters. She’s definitely Amy Poehler and I’m Tina Fey. We did some shopping and eating around Marietta Square. So, we’ve been busy. I also saw Love the Coopers with Kelsey. I cried. It was good. My two favorite guys, Hudson and Nick, came all the way to my side of town to have dinner with me last night. Driving has been a pain for me recently so they took the brunt of it to hang out with me.

Ronnie John's Beach Cafe

Ronnie John’s Beach Cafe

Tomorrow is Christmas! My sister and I are sleeping in the living room by the Christmas tree, our annual tradition. I hope everyone has a wonderful Christmas! Thanks again to everyone who has been checking on me last week and this week. My mom has changed her routine to take me to treatments in the morning before work. Kelsey and her mom have picked me up from treatment. My lil bro, Josh, even drove an hour in the morning to take me to and from my appointment on Thursday. My sister and my mom took me to the hospital on Friday. It’s definitely been a team effort. But, I’m so thankful for everyone who’s taken the time out of their schedules to take care of me because I definitely couldn’t have done it myself this time around.

My next round of ICE is the first week of January. Hopefully, it’ll be better since it won’t be followed by a bone marrow biopsy. Stay tuned.

~SL