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.

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

One More Time!

It’s time to celebrate!

I had a wonderful pre-chemo weekend. When I left the LLS office on Wednesday, my supervisor advised me to spend the weekend having fun with all of my friends and family before I had to start treatment again. I would say it was a success! I love my friends!

The weekend started with our Friendsmas potluck. I made a really good apple crisp. I also brought a box of assorted alcohol for my white elephant gift. It was stolen once, so I consider that a desirable gift. Win! I also won one round in Cards Against Humanity. That’s also a win for me because no one ever picks my cards.

Everyone at our Friendsmas Celebration!

Everyone at our Friendsmas Celebration!

The next day, we went to do some holiday volunteering at MedShare, a non-profit organization that takes surplus medical supplies and ships them to third-world countries. It was tiring because we were on our feet the whole time. It was cool because we were sorting catheters. It sounds gross, but it’s interesting to me since I have one inside of my body at all times. That sounds weird too. We even found the surgical trays that the doctors actually use to place my Power Port. I wonder how they became surplus. I was very amused to see what they used in my surgery and what’s inside of me. Creepy! Oh and then we had Korean BBQ afterwards. I ate a lot considering how low my appetite has been, which is good.

This is what I have inside of me! I have this booklet.

This is what I have inside of me! I have this booklet.

Power Port surgical kit.

Power Port surgical kit.

This morning I had coffee with one of my old high school friends, Sarah. I love catching up with her because we always have so much to talk about, even after years of not seeing each other. She’s always checking in on me still. She and her parents parents have been so supportive of me throughout everything. They are all around amazing people.

Then, one of my favorite couples (JR and Christine) took me out for Italian food at one of our favorite restaurants, Provino’s. They have these crazy good garlic rolls. I brushed my teeth and rinsed with mouthwash, but I can still taste the garlic. So good. We ended the meal with this delicious panna cotta too. Nom. It was like my last supper before chemo wipes out my taste buds.

Not only did I get to hang out with a bunch of my friends, but I was super productive. Since I have no income, I made a lot of my Christmas gifts. So, I finished all of those. I also finished all of the actual Christmas shopping that I had to do. I finished all of my financial aid applications, which makes me feel like I’m in school again. I mailed some gifts. I fixed the Netflix app on my Smart TV that my dad bought me in preparation for my post-transplant isolation. My mom and I also did a test run on getting to my cancer center since she’s going to be dropping me off in the mornings. My cancer center is on her way to work, but she’s not that great of a driver so we had to do a test run so she doesn’t get lost.

My line sister and her husband (Amanda and Michael) gave me this adorable card wishing me well on my next round of treatment. One of my other sorority sisters mentioned me in one of her YouTube videos, which prompted a bunch of strangers to donate to my new GoFundMe page. The new page was set up by my best friends to try to ease some of the financial burdens for when my deductible starts over in the New Year. Stem cell transplants don’t come cheap! My best friend, Kelsey, volunteered to take me home from treatments over her lunch breaks. Her mom also called to remind me that she’s also available to help out, too. So nice! And my little bro, Josh, volunteered to take me to my Day 4 appointment for my Neulasta shot. So I’ve gotten lots and lots of support over the last couple weeks, which I really need because starting this new round of chemo is still super scary. Thank you to everyone who has been reaching out. It is much needed and appreciated.

One last thing before I go. The other day I came across someone on Facebook who had posted a status that deeply offended me. This wasn’t the first time she’s posted something like this either. It said something along the lines of illnesses, such as, cancer, diabetes, and obesity are caused by a poor lifestyle and eating habits so people should just eat better and take care of their bodies in order to avoid getting these diseases. Yes, that is true in some cases or specific types of diabetes and types of cancers. But, there’s not just one reason that something happens. There are genetic pre-dispositions and environmental effects. Some causes are still unknown, even to the best doctors and researchers. For you to just roll everything up into one simple solution just because you got your degree in dietetics or nutrition or some shit does not mean you’ve found the cure all for every disease.

Yes, people should take care of their bodies. But, don’t you dare tell me that I brought this upon myself. I have had my fair share of kale breakfast smoothies, salads, salmon and black bean quinoa burgers. Yes, I indulged in fast food sometimes. But, I wasn’t eating cheeseburgers, fried chicken, and milkshakes for every meal every day. I was playing tennis, going to the gym regularly for yoga and weight lifting. I was running. And let’s be for real. No one likes running. I think in the past year I’ve run at least two 5K’s, one 10K, one 15K, and a half marathon, plus all of my training. Even all of my doctors were shocked to find out that I had cancer because I was so healthy.

You can’t oversimplify the cause of a disease. If it was that simple, we wouldn’t be sick! Don’t you dare tell me that this is my fault and that I didn’t take care of myself! I think people should do a little more research or specify when making such assumptions that can offend people. You’re not a doctor. You’re not an oncologist. You have no idea what it is like to be a cancer patient. You have no right to oversimplify my disease and make it sound like it was self-inflicted. And that’s all I have to say about that.

Day 1 of my 3 consecutive days of ICE chemo starts tomorrow. It’s going to be a very long treatment (5-6 hours). Wish me luck!

~SL

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.

2015-10-15 13.43.09

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