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

#MyAsianAmericanStory

I know I’m behind on posting about my last treatment. But, let’s take a break from all that cancer talk.

I hate politics. I guess that’s strange since I just got my MPA. But, it just brings out so much ugliness. And I hate controversy, people telling me my opinions are wrong, etc. But, I can’t not get involved in the conversation when it involves my heritage.

I will begin this with the disclaimer that I am proud to be an American. Don’t get me wrong here. I know that being in this country, I am privy to so many more opportunities that people in other countries can only dream of. It truly is a blessing. But, the things happening here today are just so appalling. Not just in politics, but that’s a whole other blog post for another time.

Both of my parents were born in Vietnam. Now, you know and we don’t have to have that awkward conversation. We’ve all been there. You know what I’m talking about!

“Where are you from?”
“New York.”
“But, I mean, you’re Asian. So where are from?” (Because emphasizing “from” completely changes the question.)
“I’m American.”
“Were you born here?”
“Yes… in America!”

I am American. But, sometimes saying, “I’m American,” is not enough. It’s ironic that my family sacrificed their entire lives to come to America for a better future. Here we are now, but we can’t even be considered American. Asian-American, yes. Even that term separates us from the one thing my parents worked so hard for.

My father has worked his way up by working in blue collar jobs my entire life. He showed me the benefits of true hard work. Most people I come by don’t even know what a machinist is. But, he takes pride in what he does. Honestly, I don’t get machines either. But, when my dad talks about the machines and parts, you can tell how much he values what he does. He’s turning 60 this year and he is still going to work at 5 AM and coming home at 8 PM. He still takes all of the overtime he can get because he knows that he is lucky to have a job, any job! He’s been in and out of the hospital for over a month and all he can talk about is how he needs to get back to work. My dad always told me that if you have a job, you take pride in it and you do it well, no matter what. He struggled to even get to this country. He had to leave his whole family behind. When he arrived, he had nothing. Look where we are now because of his determination.

My mother’s family was well-off in Vietnam. But, my grandfather knew they had to leave. Imagine how hard it was for my dad, one man, to get to America. On my mom’s side, you’re talking about my grandpa, grandma, their 7 kids, and 2 grandchildren. They couldn’t even get to America. They had to spend a year at an immigration camp in Malaysia before they could even come into the country. Then, they had to learn a completely new language. They had to learn about how to use money using Monopoly money. My mom said they saved up so much money because they didn’t know how to spend it. They only knew how to go to the grocery store to shop for food.

Of course, with the help of our sponsor families, my mom and all of her siblings have worked from nothing to something. These manual labor jobs that are too good for people now are the same jobs that got my family where they are today. They’re the same jobs that they’ve been working in for decades now.

This is the whole reason I am here today. When people are surprised with my strong work ethic, I tell them I get it from my parents. I remember what my dad said. Whatever I end up doing, even I don’t want to be doing it, I’m still going to be the best. I can’t imagine going through what they had to endure. I don’t want their efforts to go to waste. They came here for me.

Growing up, we all wished we were like the white kids. They made fun of us for bringing weird lunches to school or using chopsticks. So now, I hate sandwiches and I don’t know how to use chopsticks properly. People talk to my parents like they’re stupid or try to take advantage of them because they assume they don’t know English. First of all, that’s not the only language in the world! Secondly, my mom works at a bank. I’m sure she knows when you’re trying to steal her identity.

When I meet people, they still tell me that I speak English very well. Hmm… I wonder why? Maybe because I am an American?! Or when they say, “Wow! You barely have an accent.” Is that supposed to be a compliment?

I could probably rant about this for an entire novel. But, I can barely write anything that makes sense these days. So, I’ll just stop here. I am hoping and praying that one of these racist fools does not become our next President and ruin the dream that my parents fled Vietnam for. You know how I am when it comes to my family. They are my everything.

My beautiful family. We are Asian. We are American.

My beautiful family. We are Asian. We are American.

End rant.

~SL

P.S. You can read a good summary of Trump’s immigration plan here. As a child of immigrant parents, it infuriates me. Also, America was built by immigrants! Please register to vote, even if you don’t agree with me.

Round 7

I haven’t written in a really long time. Things have been kind of hectic. I’ll try to keep it short.

My dad was home for about a week before he was readmitted to the hospital. He’s been there for almost another two weeks now. He had surgery last Monday to scrape out the infection and all of the dead tissue. They also removed some of his pancreas. He’s had three drains in him since the operation. He seems to be doing better this time around. He’s finally eating solid food again. Hopefully, he’ll be discharged within the next few days and we won’t be going back. Thanks to everyone who has been checking in on him.

I got my CT scan results back from my oncologist when I had chemo last week. Everything is looking good. She can see the tumors getting smaller and said that I’m actually making really good progress. I guess I’m doing so well that she hasn’t even scheduled any off chemo week check ups for me. So… yay!

Treatment number 7 was a little rough. It was the first time I felt really sick while still in the chair. I didn’t have much time to recover. I was done with chemo at 3:30 PM and by 5:30 PM, we were on the road to Charlotte for my sorority’s national convention.

Honestly, I really didn’t feel well and I just wanted to sleep for the whole weekend. But, this was the last convention that I planned and I wanted to see it through. Seeing sisters from all of the country always makes me happy too. I’m stuck here with my life revolving around my next treatment. It was nice to get out of the routine, dress up, and be around people. I don’t want my illness to completely diminish my entire social life when it’s already taken over everything else in my life.

Convention was fun. I just wish I had a little more energy to be up and about meeting people, catching up with everyone, and going out. I’m not as satisfied with my planning this year as I was with the last two conventions that I did. But, I suppose, given the circumstances, I did as much as I could.

My sister is home for three weeks for her summer break. She’s been home for a week now and all we’ve really done is go to the hospital and sneak stuff out of the house to donate to Goodwill without my grandma noticing. My cousins are coming to visit me next week so I’m trying to get all my shit together so the house isn’t a mess. It’s frustrating. I’m moving a whole apartment’s worth of stuff into one room basically.

I got to catch up with a sorority sister who I haven’t seen in years. We weren’t the closest in undergrad and she moved overseas immediately after she graduated. She came back to visit for a couple days and we were able to meet up. She’s been a really great support, even all the way in Japan. She’s still constantly checking up on me. It’s funny how the people you thought were going to be there for you aren’t and the people you never thought would even care are actually the ones who continuously check up on you. She also brought me presents from Japan! So, shout out to you, Mirage! Thanks for everything!

Second shout out goes out to my ISM all the way in Korea. I only met him once… 6 years ago. But, he constantly checks in on me even though he’s halfway across the world and dealing with his own crazy life. Thanks for cheering me up, Antonio!

Lastly, thanks to all of the people who have joined my Light the Night team. I hope I get a good showing of people to walk with me. Thanks to everyone who has donated to my fundraiser. Your support really means a lot to me!

I can’t say that I’ve been too happy the past few weeks. With everything going on with my family and trying to readjust to being back at home, I’ve just become super depressed. I’ve read some forums and books about how you just need to sit back somedays and appreciate the suckiness of all of this. I never really imagined my life taking such a drastic turn and I guess I’m just not handling it all that well.

I remember my first day of grad school. I fell in love with my program and everything I was learning. That was the last time I really had that “this is where I’m supposed to be” feeling. I was so focused on school. I knew that I was going to do well and that after two years, I’d finally be able to graduate, land a job that actually meant something to me, and start living my life.

I didn’t expect to miss the last month of classes, to have to reschedule all of my finals and papers, to have surgery two days before graduation. I didn’t think I would be 26 years old, having to move back home because no one wants to hire you when you can only work every other week. Not sure what a “normal” 26 year old life is supposed to be like. But, I sure as hell didn’t picture it like this.

I miss the days when getting out of bed in the morning was only difficult because of all the fun I had partying with my friends the night before. Now, getting out of bed in the morning is a struggle because I know I’ll just be tired again in a couple hours. Or because I don’t know how my body is going to feel that day. Or because I’m just in constant pain all the time now. Or because Dory (from Finding Nemo) has a better memory than I do. Or because I have to take a break when walking up staircases now and people look at me funny because they think I’m really out of shape even though I was running races every month before. Or because I’m so physically weak now that I have to rely on other people for basically everything. Or because too much movement makes the foreign object I have implanted in my chest hurt like a bitch.

I wonder when things will start getting better. I know everyone is getting sick of me and hearing about how I’m sick. And I know everyone is going to say to “stay positive!” and “it’s all about your attitude!” Well, fuck it. Some days, you just have to sit back and recognize the shit hole of a situation you are in so that you can start digging your way out. And yes, I have problems. But, so does everyone else I know. The only way out is to look up and move on. It sucks that I have to do it by myself. But, that’s life.

Hopefully, my next post will be sooner and less sad and I won’t be writing it while inebriated (but you know, that’s when people are the most truthful). We’ll see. I just want to run away. You win today, cancer. I’ll try again in the morning.

To end on a good note, congratulations to my cousins Amy and Chris on their first child! Welcome to the world, Lyra Roseminh Selin! I’ve been taking pictures of people doing the “Lyra pose” in celebration. Hopefully, I’ll get to meet her soon!

Who does the Lyra pose better?

Who does the Lyra pose better?

~SL

Round 6

I never know what to write about anymore these days. There’s nothing new anymore. I’m so boring.

Treatment #6 was my first chemo in my new cancer center. It was also the first time I drove to treatment myself. I suppose it went… alright. They were training a new phlebotomist who has never worked with ports before. So that day, they decided that she would be accessing all of the ports so that she could get some practice in. Lucky me. She didn’t get my port the first time she stabbed me with the needle. She had to pull it out… and stab me again. I was getting good blood return at first, but then it stopped. So they decided to just stick me in my arm to get blood for my labs. You have to get blood work done before you can start your treatment so they can make sure you’re strong enough.

Well, she stuck me in my left arm. But, she messed it up! So she pulled that out and stuck me again in my right arm! They kept the IV in my arm in case my port wasn’t working for the doxorubicin that they have to push with the syringe. So I got stabbed 4 times and I had two IVs.

The center was so busy that day. Almost all of the chairs were filled. I managed to nap a little. Treatment itself went by pretty smoothly. I just have to remember all the nurse’s names now. I miss my old phlebotomist. Then, they put a bandaid over my port after they took the needle out. I guess I thought I wouldn’t have a bad reaction because it wouldn’t be on long. But, I was wrong. I am so allergic to adhesive! Now, I have a gross bandaid shaped rash on my chest. Great.

Afterwards, I managed to make it to lunch with my friend, Kelsey. I went to the hospital to see my dad and I fell asleep in the chair in his room. I woke up covered with a blanket. It’s so funny that he was the one in the hospital and he still ended up taking care of me. I love my dad.

My side effects were really strong for the first few days. I usually get pretty bad nausea. But, this time, I felt like I was really going to throw up. I don’t know if I would feel better if I actually did. The nausea, fatigue and body aches are getting really bad. The other symptoms are pretty much the same. More hair loss, discoloration of my nails, dry mouth, dry skin, etc.

I’ve decided that after my sorority convention, I’ll be shaving my head. It’s just getting really annoying. I wake up with hair everywhere. I shower and hair is everywhere. I comb my hair and it all falls out. I find it all over my clothes. My scalp is irritated. I’m over it! And I’m close to running out of shampoo anyway. I already started online shopping for head coverings. I think I’ll be more of a scarf person. I’ll get a wig for the 3 weddings I’m going to.

In non-cancer news… Well, I guess everything in my life is cancer-related now.

I started volunteering with the Leukemia & Lymphoma Society, Georgia Chapter. I do a lot of office work in patient access. My supervisor is an HL survivor so it’s nice to have another person I can talk to. She understands everything so when I’m not feeling well and can’t come into the office, she gets it. It’s been really cool being able to help out for an organization that has already been a great resource for me. I think my supervisor really trusts me too. She’s going on vacation from August 1-10 and she’s leaving people with my contact info even though I’ve only been there for 2 weeks, not even a real two weeks because I’m only in the office Monday through Wednesday.

My dad is finally out of the hospital after nearly 2 weeks. He really won over all of the nurses. They loved him! Hopefully, he stays out of the hospital this time. But, thanks to everyone who has been keeping him in your thoughts.

My neighbors helped us out. They noticed that our lawn had gotten out of hand so she came over to ask if everything was ok. They paid the kid who mows their lawn double to take care of ours too. My mom and I went over to her house to thank them and ended up staying there for almost an hour, catching up on the last 10 years. I don’t think we’ve talked to her since I went to middle school with her son. People in the south are so nice. That would have never happened in New York.

So these past few weeks have been hectic with my dad being in the hospital, my treatment, grandma trying to run away. Oh yeah. Grandma tried to run away again. She said she had to walk to Publix because people were picking her up to go to the dentist. She started putting on her shoes and grabbed the house keys. Luckily, we stopped her in time.

It’s been kind of lonely at home. I miss being in Athens, surrounded by people who don’t nag me about my medical bills. I really need to figure out what I’m going to do with all of my stuff I moved back home. Eventually, my sister is going to come to visit and she won’t even be able to walk into her room because it’s currently serving as my storage area. I’m thinking of hosting a yard sale, Kate Plus 8 style, to benefit my fundraising efforts for the LLS Light the Night Walk.

By the way… let’s talk about Light the Night! I’m really excited for this event after talking about it with my supervisor over lunch today. It’s a short walk to raise money for LLS and to honor survivors and those who have lost their battles. People who fundraise at least $100 will get a lantern to hold for the walk. Survivors get white lanterns. Supporters get red lanterns. Those walking in remembrance of someone get gold/yellow lanterns.

I would love for you all to join my team and walk with me! My team name is Remedy for Remedi. We’re going to get shirts! But, even if you can’t walk, you can create your own page to fundraise or donate to my page. LLS contributed to the research that found my current chemo regimen of ABVD to treat my Hodgkin’s Lymphoma. So without them, I’d have much worse odds of survival. I hope you all can join me! It’s going to be a great event!

2015-07-23 09.08.06

After being poked and prodded. Chemo #6.

I am officially half way through chemo. I have a CT scan this Friday to check my progress. Fingers crossed for positive results!

~SL

Home.

This past month has been crazy. I have been spending a lot of time back home with my parents since my dad is still in the hospital. Yet, I’ve also been trying to slowly move all of my stuff back to my parent’s house. It has seriously been such a struggle. This whole move has gotten me thinking about a lot of things.

I have to say one thing that really sucks about having cancer is not being able to do things on your own. I could have easily moved most of my belongings back home by myself if I wasn’t so weak and tired or if stairs were not my worst enemy right now. I had to rely on so many other people to move. I have never felt like such a great burden on my friends and family and I hate that feeling. I tried to move as many things as I could myself. But, with my low red blood cell count and the ridiculous heat, I moved until I nearly passed out. And stairs! I have to pull myself up by grabbing onto the railing. I was so tired from everything that I just fell asleep on my floor. I couldn’t even make it to my bed.

This is why it’s so hard to ask people for help. Everyone has their own lives to deal with. No one has time to help me. When I got sick, everyone said that I could ask them for any favor, big or small. But when it comes down to it, ain’t nobody got time for that! Let’s be for real. Being helpless is the worst feeling in the world.

I’ve had a lot of different reactions to my cancer. There are people who want to genuinely help, but they can’t. They’re the ones who are constantly checking in on me, sending me cards, and asking me questions. There are people who say they want to help, but really they just think my disease is an inconvenience for them and they’re just hoping I don’t ask them for any favors. Then, there are the people who don’t wait for me to ask for something. They just know. It’s really opened up my eyes to the people who truly care about me.

But, I got it all done with the help of a handful of reliable people.

I am glad to be out of Athens again. But, I don’t know how I feel about moving back into my parent’s house. Yet again, I am reminded of how all of my plans have been thwarted by cancer. And, if you know me at all, you know how much I love plans! I am 26 years old. I have two degrees and no job, living with my parents.

I transferred to a new cancer center closer to home. My new doctor is very peppy and nice. She uses real cancer terms with me, which is weird. My old oncologist never used the technical terminology. Luckily, I knew what she was saying because of all of the Googling I’ve done. She said that I was delightful! But, she’s not in the office on Wednesdays, so we’ve switched my chemo to Thursdays.

Since this week will be the halfway point of my treatment, I’m due for a PET scan to see how I’m progressing. Fingers crossed.

It’s been a rough month. Hopefully now that I’m done with moving, things will start to calm down. I’m done venting for now. Thanks for reading my rant.

~SL

Round 5

I am so tired.

Chemo #5 went pretty smoothly. It felt like it flew by, but I think it was because I was asleep the whole time. It was my last treatment in Athens. The nurses said they would miss me because I’m always laughing and I have “sassy hair.” My blood counts were lower than usual though. Maybe that explains why I’m so hot and dizzy all the time. But, no problems with my port this time. Yes!

I’m not sure if I’ll miss getting treatments in Athens. They don’t allow visitors. My nurses were nice though. I didn’t really get to know many of the other patients because they were all so much older. We all kept to ourselves, except that one loud, obnoxious dude. Maybe there will be younger people at my new cancer center. But, that’s kind of sad… more young, cancer patients. Who wishes for that? Me! I want a friend…

I felt so tired afterward. I had been in the hospital with my dad for the past ten days before my treatment. He was doing well recovering at home until yesterday. He started vomiting a lot so I took him back to the ER this morning. He’s in the ICU now. They’re trying to get his pancreas inflammation under control… again. He’s got 3 IVs in him! That’s crazy…. and gross. I hate medical things. Hopefully, he’ll be out in a couple days and not another 10. Fingers crossed.

My friend, Tariq, and I improvised some plans for the 4th of July. We went to the park to watch our town’s 3rd of July celebration. On the 4th, we had dinner at Tokyo Bay for my boo’s (Christine’s) birthday. It rained that night, so I just stayed home… on my favorite holiday of the year.

This post is all over the place. I blame chemo brain.

This is also my last week in Athens. I’ve got the moving truck reserved for this Sunday… and no one to drive it. I don’t know how I’m going to move… I have a crew in Athens ready to help. I’ve got a crew in Kennesaw ready to help. But, how to move the things from Athens to Kennesaw…? I’ll be driving my car full of stuff. And even if I did drive the truck, I’d need someone to drive me back to Athens to get my car. I’m just thinking out loud because I don’t know what to do. Help me. I’m so tired.

I think the side effects are getting worse and worse. Or maybe it’s because I’m stressed with my dad being in the hospital, having to move, and other work that I volunteered for. My body hurts so much… everywhere. My mother wanted to go to the mall last weekend, so I drove her and my grandmother to go shopping and left my dad to rest quietly at home. I was moving so slowly. My legs hurt so badly. And I was getting light headed just walking around.

My taste buds are changing. Everything tastes like crap, even my beloved mac and cheese. I tried! It makes me not want to eat anything. My skin is getting so dry. And my mouth. And my fingernails look disgusting, like they’re rotting. I told my sister I’m killing myself to save myself. She said that should be the name of my autobiography. I’m sure it’s already taken though.

I drove straight home after a one hour nap after chemo. My dad had a doctor’s follow up the next morning and no one else could take him. I couldn’t make it the whole way. I stopped halfway and my amazing lil sis, Jessica/Inertia, took me out for dinner. We sat there talking until the restaurant closed and kicked us out. It was great!

My lil bro, Josh/Dumbbell, treated me to dinner this week too. He let me choose So Kong Dong, but I don’t think he even likes tofu soup. My littles are the best. (You too, Anthem!)

I sound fucking crazy right now. Probably because I was at the hospital all day on 4 hours of sleep. Kelsey picked me up from the hospital to take me home on her way home from work. I met my mom at home and she drove us both back to the hospital. I had to test her to see if she knew where she was going. It was so scary. If you know my mother and her driving, you understand.

Our awesome neighbor stopped by yesterday. She said she noticed our grass was getting crazy and that my dad looked really thin. I told her what had been going on so she had her lawn care people take care of our lawn too. How nice!

My cousins sent me a care package. I think my favorite thing in there is this horse hand puppet. He’s so cute! I should name him.

I got my largest medical bill so far. It was for over $3,000. I don’t even think it was for chemo. I think it was for the echo I got back in May before I even started treatment.

I didn’t even bother to organize this post. Now, you can really see how crazy my brain is on chemo. This is how I think. Except, I can’t really remember things. So it takes me longer to type one sentence because I forget what I’m talking about.

Let’s see what pictures I have from the last time I posted.

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Chemo #5 selfie.

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3rd of July beer while waiting for fireworks. I don’t think I’m supposed to drink. But, I self-imposed a 2 beer limit on non-chemo weeks.

I’m so tired. Good night.

~SL

Oh and I just listened to this Kelly Clarkson song that made me feel better. I thought I’d share.

“No one hears silent tears collecting.”

Round 3

I wish I had more going on in my life than chemo and cancer. It’s summertime! I should be out doing things with my friends. But, all of my friends are adults now with real jobs and no summer break. This is becoming routine, but it’s not getting any easier. Things are getting lonely. At least I’m a quarter of the way done.

My last chemo session was probably the worst one yet. My cancer center made all of these changes that are completely ridiculous. I think it’s so they can treat more patients at one time. When I came in before, I would always go directly to the lab where the phlebotomist would take my blood to do all my lab work. If I was having chemo that day, she’d be the one to access my port and get it all ready to be hooked up to my drugs. Now, if you’re going into chemo, one of the chemo nurses does all of your blood work and accesses your port.

I love my chemo nurses. They’re so nice. But, she did not know what she was doing when she was stabbing me in my chest to access my port. She didn’t even look confident. My usual phlebotomist does it so quickly and she always gets immediate blood return. This time, it took over an hour to get even the tiniest bit of blood from my port. She kept pushing the needle around in my chest because she went in at an angle instead of straight. Eventually, my port wouldn’t give blood so they had to prick my arm for my blood work anyway. It left my chest a little bruised and in more pain than usual post-chemo.

My cancer center also finished a remodel so that they could fit more chairs in the infusion room. But now, the room is filled with chairs for patients so they no longer allow visitors to sit with you during treatment. I had to spend the whole time alone! Whoever thought of that was an idiot. I hope they change it back by my next treatment. At least they finally fixed the internet.

My side effects this time around were worse than my second treatment. So now, I really don’t know what to expect anymore. I had some bad nausea so I gave in and took my anti-nausea medication, which I don’t like taking. It didn’t affect my appetite like it did before though, so that’s good. I have more aches and pains. I feel like my nail beds are turning purple. My hands and feet get tingly and numb. My mouth is getting drier. Then, there’s the usual fatigue and hair loss.

I hate to harp on my hair loss, but it really messes with you. I think it’s especially hard for me because I’ve always had long hair and it’s never been a problem trying to grow it out. People look at me now and they don’t see sickness. They just see a cool haircut. I’ve gotten so many compliments on my new hairstyle. But, it kind of sucks because I know it won’t last. The hair loss is just getting worse and I know eventually I’ll just save myself the trouble and shave it all off. Then, what will people say? How will strangers look at me? People won’t have to be told that I have cancer. They’ll be able to see the sickness. I guess that’s just something I always think about now when I look in the mirror.

Now that I have successfully managed to depress all of my readers, let’s move on to happy news. Last week, I got a visit from two of my favorite people in Orlando, my syands (Dieu) and my grandbaby (Adrian). Thanks for the yummy lunch! I know you guys came up for Epik High, but I’m glad you made time for me! I had my last Taco Tuesday date with my good friend, Hudson, before he moved to Nebraska. Yeah… who moves to Nebraska? What? I went to Conyers for a mini HOA/AmeriCorps reunion. I went a couple nice walks with this really hot, but really nice weather. My parents came to visit me yesterday. They took me out for steak and then we packed up some of my apartment stuff with the help of two fellow MPA-ers. Thanks, Joseph and Vipin. It’s nice to have strong friends to carry your stuff for you. Oh and I had some really good food. Finally got to try Goodie Two-Shoes with Jaleesa and had the best BBQ in Athens at Dawg Gone Good BBQ with Joseph. NOM. I love food. And I made brownies. Yum.

I’m excited for this upcoming week. Good things happening. Always good. Always blessed. Always thankful.

I really need my life to be about something more than cancer. Then, I can write about something fun. Until next time, here are some pictures to hold you over.

Traffic selfie with my cool new hair.

Traffic selfie with my cool new hair.

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Bored during my solo chemo session.

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Doxorubicin. The Kool Aid. Makes your pee red. Gross!

~SL

Short Hair, Don’t Care

Ok. But, I actually care a lot. I love my hair! I feel so exposed. My ears. My neck. My giant forehead. It’s weird. My parents keep calling me their new son. My dad said he always wanted a son and now he has one. My parents are such jokers.

My hair loss was getting a little crazy for me. I could gather a pile of hair from the bed after waking up. I cried every time I took a shower. I’m not sure if it was the love for my hair or the traumatic effect of seeing it all.

Right now, I feel pretty good. The side effects from my second treatment weren’t as bad as my first one. In my check up yesterday with my oncologist, he said everything looked really good. My blood counts were up and I’m not in danger zone for needing a blood transfusion anymore. If you looked at me, you wouldn’t be able to tell that there is anything wrong.

Now, with the hair loss, you can tell. Well, I could tell at least. I have a lot of hair so other people couldn’t really tell how much I was losing. But, I know eventually the bald spots would start showing up and my hair would just get thinner and thinner. Then, everyone would definitely be able to tell. So why not just tackle the issue while I still look good and healthy to everyone?

Other cancer survivors will tell you that it’s better to handle the hair situation before it’s no longer in your control. It probably is one of the more traumatizing experiences because your disease is starting to physically show itself. I mentioned in one of my other posts that one of my biggest fears is that I’ll start becoming a different person. I’m scared I won’t be as bright and bubbly anymore. Honestly, this whole hair thing was really getting to me mentally and it was getting out of hand. So, I just chopped it all off!

When my oncologist saw me yesterday, the first thing he said was, “Oh, you still have your hair.” I also cleared the hair dyeing with him even though I only wanted a small streak, just to be sure. He said, “It’s going to fall out anyway, so why not?” He continued on to say, “There are some studies out there trying to prove that dyeing your hair causes cancer. But, you already have cancer.” This makes him sound mean and insensitive. He’s actually really nice and funny!

I’m feeling super self conscious trying to pull this short hairstyle off. So naturally, I did what any girl would do. I posted it on social media to get an ego boost from all of my friends. Thanks to everyone for reassuring me that I do not look like a boy and that I am still me. Thanks to my wonderful aunt for cutting, coloring, and styling my hair. She’s amazing and if you’re in the Woodstock, GA area, you should definitely hit her up for your next cut.

Making hair loss look good.

Making hair loss look good.

 

Thanks to my Mama Enigma and my twin, Christian, for sending me random, positive vibes this week. That just proves that distance doesn’t matter when it comes to showing support for someone you love. Thanks to Pinnacle for having a heart to heart with me over lunch this week. Thanks to my bestie, Kelsey, and her mom for joining me in dyeing their hair purple. Thanks to my personal nutritionist, Joseph, for reviewing my lab work and tailoring juice recipes to my needs. Thanks to my Follett family at the UGA Bookstore for sharing my story and my GoFundMe. And I said this before, but I probably have a million more thank you’s to give to everyone. Seriously, I think I would fall apart without all of you.

I’m fighting this disease from invading my body, but also my mind. I’m not sure which one is more difficult. Cancer is a part of me. It is not who I am. It will not define me.

~SL