A Month Later…

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

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

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

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

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

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

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

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

Circle of Hope at the LLS Fundraising Event.

Circle of Hope at the LLS Fundraising Event.

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

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

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

Chinese New Year dragon dance.

Chinese New Year dragon dance.

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

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

Free brunch courtesy of Dinh's bonus.

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

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

~SL

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

Farewell, 2014! Hello, 2015!

2014. What can I say? It was filled of weddings. I went to a total of 7 weddings this past year. I was originally planning for 4. At least they were all spread out. I was part of one wedding party officially as a bridesmaid for my best friend. I did the reading for my cousin, April’s, wedding. And, of course, with any family member, you’re always involved in planning and helping out the day of. My sister and I also did rap remakes at the receptions for our cousins, Amy and April. Amy and Chris got a remake of the Fresh Prince of Bel Air theme song. Too bad there wasn’t a video for that one. April and James got a remake of Baby Got Back. Shital’s wedding was my first Indian wedding. Since I was a bridesmaid, I got the whole package with henna and all of the Indian outfits. It was basically a three-day wedding. Very cool! I also went to my first Kenyan wedding. There were also a lot of interesting, cultural traditions. And yummy Kenyan food! Also went to my first Thai wedding. They do a water ceremony for blessings on the new couple. The outfits were so regal! It was nice that all of the weddings I went to were so different and unique. Next year, I only have one wedding lined up so far. I’m excited because I have the honor of being a bridesmaid. Yay!

Going to all of these weddings not only made me super poor, but they also taught me a lot about love and the kind of love I want for myself. I think the most important lessons about love and relationships I learned is that everything is a two way street. Relationships can’t work if one person is giving more than the other. There has to be compromise and mutual decisions and understanding. Relationships matters should only be kept between the two people involved. Everyone outside of your relationship should just think that everything is great. Problems should be resolved amongst the two of you without involving everyone else. Not only does that make other people think negatively about your relationship, but it doesn’t help the two of you become stronger in solving your own problems. Luckily, I’ve gotten to the point where I’ve accepted that I will probably never get married. So, I have nothing to worry about!

I feel like I didn’t get to travel that much this year. I still went to New York four times. Twice for family weddings. Once for my cousin’s bridal shower. Once for Thanksgiving. I went to Orlando four times. I only flew once so I got really used to that solo 7-hour drive. At least I don’t have to do that anymore. I went to Miami for my best friend’s bachelorette. It affirmed my decision that I hate Miami. But, I still had a good time with the girls for her send off into married life. I also took a weekend trip to Oxford, Mississippi to visit my line sister. There’s not much to do there, but we had a good time together. I took two cabin trips, one in the north Georgia mountains and one in Helen, GA. The one in March for my sorority sister’s birthday was my first! I also went to Chicago for the first time for my sorority Convention. It was great! I want to end up there one day.

I didn’t get anything crossed off of my bucket list. I did run my two 5K’s and my first 10K in preparation for my half marathon in February. Shout out to my running buddy, Hudson, for helping me stay on track and train with me! Such a bad idea. I suppose I didn’t focus much on my list because I was busy with weddings and school. I think I mentioned this before, but in graduate school, full-time is 9 hours. This entire year, I took 15 hours both semesters. I completed my disaster management certificate. I also completed my Community Emergency Response Team training and joined UGA’s Medical Reserve Corps. I interned with the Keep Georgia Beautiful Foundation, The American Red Cross, and the Northeast Health District Office of Emergency Preparedness and Response. I got all A/A-‘s. I also exceeded my goal of raising $250 for the American Lung Association for my 25th Birthday Fundraiser!

I received and accepted an offer for a one year fellowship program with the National Nuclear Security Administration that starts after I graduate on June 1. So I will have a salary, benefits, and not be homeless after graduation! Mission accomplished… contingent upon my federal security clearance. Fingers crossed.

There were also some rough moments of 2014, expectedly. The end of a relationship I thought would have lasted longer. The loss of an old high school friend. The loss of a close friend’s mother. My costochondritis during my 25th birthday. Injuring my ankle and having to take a few months off from running. Managing volunteers, data applications, and public financial management. My first maymester class for geographic information sciences. But, no home robberies or car break-ins this year!

2015 has a lot going on already. I’ll be turning 26. I’ll be graduating from school. I’ll start my new job on June 1. I’ll be celebrating the marriage of my two dear friends Amanda and Michael. I also want to plan an overseas trip for the weeks between graduation and starting the fellowship. We’ll see how that goes. I’ll also be going to Las Vegas at some point and going on a cousins trip somewhere. I’m excited that I’ll only be taking 9 hours during my last semester. I feel like I’ll have a lot of time and 5 days weekends.

As for resolutions, I have one that kind of encompasses everything I want to do. That is, to take better care of myself, mentally, emotionally and physically. That includes eating right, exercising more, not letting people’s opinions get to me (especially my super judgmental parents), not losing myself in an unhealthy relationship, not wasting my time on useless and mindless activities, etc. I didn’t blog as much this year either. So, I guess I could resolve to do that more. But, I don’t know how interested people are in reading about my life. Maybe I’ll just keep my own, handwritten journal.

As for the 2014 resolutions I made, I think I did a good job with them. But, I think they can still be improved upon. I did take more pictures of people than food. I was actually struggling to find enough food pictures for the introduction of my recap video. I also did a better job of taking more videos of things, hence why my recap video is longer this year. I wish I did take more videos of things. Either way, I hope you enjoy my video recap of 2014! Let’s see what excitement 2015 will bring!

Shout outs to Jessica W. and Michael L. because I stole pictures from you both for the video. I think those were the only two people…

Cheers!

Cheers to 2015! And to a successful hand at a bold eye with a nude, matte lip.

 

~SL

Wedding Season

I officially have one month left of summer before classes start again. I feel like I’ve done a lot of things this summer. Yet, at the same time, I feel like I haven’t done anything. For one, I haven’t completed anything on my summer bucket list. I have finished one book so far out of my three. I read Divergent in case anyone was wondering. That’s a trilogy, so maybe I’ll just finish all of them so I can meet my goal.

In other news, I’ve pretty much just been busy with wedding festivities. During the last weekend of June, I went to my cousin April’s wedding in New York. I got to see all of my family again and had a great time at her city wedding. We even had a bachelorette dinner for her at Freemans. So good. Then we had a family picnic in Central Park the Friday before the wedding. It was nice to give both of the families time to mingle with each other. For the wedding, we stayed at a boutique hotel in Queens, the Z Hotel. The wedding was at Attic Studios, which was very spacious and had a lot of windows so there was great lighting. Both places had great views of the city. I also had the pleasure of doing the reading for the wedding. I read a poem called, “On Your Wedding Day.” And, of course, my sister and I performed our own rendition of “Baby Got Back” at the reception.

Here is a recap video of April and James’ Wedding. The song I chose was the one used for the processional. They used an instrumental version though. Welcome to the family, James!

Kish Table for 2 from Stephenie on Vimeo.

I got back from New York on Tuesday night. By Wednesday, I was already prepping for the next wedding for one of my best friends, Shital. We started with wedding festivities on Thursday night with Mehndi (Henna). It was so cool! The girl who did my Henna was so young, but her Henna was so pretty and intricate. It was amazing. On Friday, we began with a Pithi ceremony in which the bride is covered in turmeric paste. It’s said to lighten the skin and cleanse the bride to make her pure for the wedding, I believe. Later on that night, we had garba! Very fun! Lots of dancing that I couldn’t do. Her cousins even bought fireworks to set off in the back of the venue since it was the Fourth of July. Saturday was the wedding ceremony and the reception. I didn’t understand what was going on during the ceremony, but it was all very interesting to watch. The reception, of course, was very fun. She had a great DJ so everyone danced all night long.

Here is a recap video of Shital and Jitendra’s Wedding festivities. The song is the one they used for their first dance.

Shitendra752014 from Stephenie on Vimeo.

After her wedding, I had a quick stint back in Athens and then I was off to Orlando for a quick getaway for the weekend. I rounded off my summer wedding festivities with a bridal shower for my sorority sister, Manida, today. I had a great time. The food was delicious. The games were fun. The drinks were good. The decorations were so cute, I even took one of the centerpieces home. Her bridesmaids did an awesome job.

Hopefully, I can use this last month of my summer to get some stuff crossed off my bucket list. Otherwise, you probably won’t hear from me. Hope everyone is having a wonderful summer!

~SL

And so it begins…

So this is the beginning of my personal blog. Took me forever to figure out how to get my URL linked and set up. Blah. I”m still tweaking the look of the site and looking for a template I like. Bear (is that right? or is it bare? I dunno. Stupid homonyms) with me.

I really don’t know what I’m going to fill this with. Hopefully something entertaining that people will enjoy.

It’s a work in progress. We’ll see.

-SL