Living Like a Ghost…

… while the world passes her by.

That’s a quote from a book called, “Marrow” by Elizabeth Lesser. My sister asked me to read it a while back and I’m just now getting to it. The book is about two sisters who are doing a bone marrow transplant. So this is probably a bad time to be reading it. But, what else have I got to do? Other than planning my sister’s bachelorette and my wedding.

Ah! Sounds so crazy that I’m planning my wedding. But, if you really know me, than you know that I’ve already planned everything out. So it’s actually not that much work for me.

I know I haven’t updated in so long. Honestly, writing everything down means confronting my thoughts. That’s a danger zone. However, here in the hospital, there’s nothing else to do. I’ve had a lot of time to think here. I hate that. But, here is what’s been going on.

Justin and I are engaged! I told him that I didn’t want to get married until I was in remission. I vainly want my own hair for my wedding. I went to a radiation consultation. When the radiation oncologist looked up my last scan, he told me that I was in remission and there was no sign of disease. My transplant oncologist hadn’t gone over the results with me yet, so it took me by surprise.

I wasn’t happy about it though. I always dreamed of the day that I would hear those words. When I finally did, I felt scared. Cancer is never gone. It will always be in my head, my thoughts. When I feel horrible or something hurts or I cough, I can trace it back to my disease. What about when I get sick now? Is it cancer? Is it back? When I feel so fatigued that I can’t get out of bed, is it cancer? Is it back? My fellow survivors tell me that this feeling will go away in a few years. I hope so.

Anyway, back to the good part. I found out I was in remission on a Thursday. Justin left work early on Friday to spend some time at a local jeweler. When he got home, I was playing on my phone. He said, “Can you put your phone down?” I really thought I was in trouble, like I did something wrong. But, he just got down on one knee and said, “You told me to wait until you were in remission.” He asked me to spend the rest of my life with him and I said, “Yes!” Of course, he would have been stuck with me even if he didn’t ask.

I spent most of February getting as much time as I could with him and the dogs at home. I knew getting a transplant meant a long hospital stay. I love my house. I love my pups. It hurts so much to be away from all of that and Justin for almost four months.

My transplant was originally scheduled for February 27. My doctor pushed it back a day because the team wanted to change what kind of high dose chemotherapy I was going to get before my transplant. For those who are wondering, I had to do the transplant despite being in remission because there could be some more tiny, active cells that can’t be seen on a PET scan. We want to make sure everything is gone for good. My transplant oncologist informed me that my heart was too weak to take the chemotherapy they originally wanted to use.

To make a long story short, I had my tri-fusion catheter placed and I started the transplant process with total body irradiation (TBI). I had 5 sessions over the first three days. I was on the radiation table for what felt like forever, but I think each session was only about 20-30 minutes. It made me so tired. I would just fall asleep while laying there on my side. They would tape my shoulder to the board behind me so I wouldn’t move when I fell asleep. They played Justin Timberlake at my request. I love his new album and you should too.

After the radiation, I had four days of high dose chemotherapy. Then, a day of rest. The next day, my sister went in to get her central line placed to get the stem cells from her blood stream. She had to give herself Neupogen injections for a week before the the transplant. It was to make her bone marrow make more white blood cells. She said she had never felt that kind of pain in your bones. Initially, they said she didn’t produce enough stem cells so they pushed the transplant back another day. That night that I was supposed to get the transplant, they called to tell her that they were mistaken and they actually did get the four million cells that she needed to make for the transplant.

We finally had the transplant on March 1. That’s an easy day to remember. The nurses even come in with morraccas (spell check?) and sing happy birthday to you. Since they’re basically resetting my entire immune system, it’s like I’m a newborn. This transplant went better than my first one. I didn’t vomit the whole time they were transfusing the cells. I did have nausea issues for a couple days afterwards before they were able to get the medications right to control it.

I feel like I’ve been in the hospital for so long. I think it’s been ten days… I really have lost track of everything. I thought today was Wednesday. I can’t believe the transplant was only a week ago. It feels like ages. I can feel my body breaking down. I’m 28 with the body of an 80 year old woman. I can barely make it across the hall to grab snacks from the visitor’s lounge. Every movement hurts, even as I type. I can’t even wear my engagement ring! Well, maybe I can now since I’m done with TBI. Justin got me a silicone ring to wear, but I miss my real ring.

I still have no appetite. I get weighed every morning and it just keeps getting lower and lower. I have cravings, but that doesn’t actually make me eat. My mouth has been so dry. I have to do these saliva substitutes so that my mouth won’t be as dry. All of these little things that we do every single day are so hard for me to do now.

I am on day +7 from the transplant. They say that +7 to +16 is your “basement period” where your immune system is basically zero. I feel so dead, literally living like a ghost. All of my energy is gone. It’s taken me an hour to get this far in my writing. That’s another reason why I don’t update as much anymore. My hands have a tremor, too.

This is what happens when you’re in remission. It never ends.

I wanted to write more, but I’m so tired. I’ll try to update more often since I have so much time on my hands. Prayers, good vibes, and any other positive energy much appreciated. Also, a big thank you to everyone who has come to see me so far. I know Emory is a trek for a lot of people. It makes the days go by faster.

I love you all so much.

~SL (future SP <3)

Mind. Body. Soul.

I haven’t updated in six months because things have been somewhat uneventful. I feel that the quickest way to recap what has been going on is by separating it into the following three categories: mind, body, and soul.

Mind: Since I have has so many issues with my latest treatment, I went on medical leave from work in September. After three months, I still wasn’t 100% ready to go back to work full time. Unfortunately, my boss needs a full time person in my position so I knew the right thing to do for the integrity of the program was to resign. As I have mentioned before, I love what I do. I finally work in a position doing something I’m actually interested in and passionate about. I had a great working life and I really enjoyed what I did. When I first got that job, it felt like things were finally going my way. I hate that a lot of my satisfaction and happiness comes from working. But, now that I am unemployed again, I feel like I need something to reignite my passion. I want to find something that I will be able to do either with a flexible schedule or from home. I need to find a way to pay for COBRA insurance premiums in the meantime (will be looking into LLS copay help again, of course) or find a way to even get insurance if all these repeals go through. I have a mortgage, car payment, and a Netflix addiction (first world problems). I need to find my motivation again. I used to love doing so many things. I just have to get back into a routine without the nausea, fatigue, and pain getting in the way. I need to find something to keep increasing my knowledge. I need to find a path.

Body: I can feel my body physically getting weaker everyday. I’m getting slower and slower. I have less and less energy but I need more energy to do the same daily tasks. In the last month, I think I have had one morning where I actually felt well rested and energized for the day when I got out of bed in the morning. I get so much sleep, but I never feel fully rested. It gets so hard to get out of bed, especially the colder it gets. The days that I have the energy to get out of the house, I feel exhausted the next day. It’s like I need a 24-hour recovery period from any activity. Just walking through the grocery store or Walmart tires me out. I’m so happy my house doesn’t have stairs. I haven’t had any extreme pain recently. I did have another short stint in the hospital again for extreme vomiting. I just couldn’t stop throwing up the entire day. That was about when my FMLA began. Since that hospital stay, my side effects have been manageable.

**GOOD NEWS –> I did get a PET scan about a month ago and I got the results from my oncologist at my last treatment. There’s basically no sign of disease left in my neck, chest, abdomen, and pelvis except for one node that is only a few millimeters in diameter. So we know the treatment is working. My doctor is trying to decide now whether or not to do another round of treatment or go straight to transplant. It’s looking like we’ll be doing another round of treatment unless I hear from him before January 3rd. But, he’s back home in the Middle East right now so… doubt it.

Soul: I feel like the light in my soul is slightly dim at the moment. I love my life. I couldn’t be more thankful for everyone in it and even strangers who have shown their support for me. It really amazes me everyday that Justin hasn’t complained about anything because I have definitely been slacking around the house despite my lack of a job. My parents have checked in on me everyday since I got released from the hospital. We had a nice Christmas with the three of us at my house. It was the first Christmas without my grandma and, unfortunately, the end of our traditional annual family Christmas card. My sister was also unable to come home for Christmas since she was working. It’s another change to adjust to, but the holidays will never be the same.

I’ve had a lot of good times with my friends these few months with some people even making the big trek to the mountains to see me. I had a very relaxing getaway with my line sisters to Chattanooga. I feel so grateful for being able to attend my friend’s wedding. I remember being in isolation and everything the year I had my transplant and I missed three weddings. I’m glad that I was able to make this one for one of my dear sorority sisters and the first wedding with Justin as my +1. I just wanted to end the year with something more to look forward to. I also didn’t want to end another year going through treatment. Although, I will hand it to the WInship volunteers for bringing Santa around the clinic and singing Christmas carols. That was a fun day at treatment. I wanted to end the year on a high note. I usually look forward to making a recap video at the end of the year to review all the memories, but I just don’t feel as excited this year. Like I said, I just need a little boost. Something to pick me up and motivate me to get going again.

Again, thanks to everyone who has kept in touch with me despite my lack of updates. I will try to be more consistent in 2018.

~SL

Do You Remember?

I’ve been very reluctant to write anything lately. I have been in this fight for nearly a year and eight months now. I’m tired. I’m done. I also lost my username/password for a little bit. But, I remembered it!

These past couple months have been an emotional rollercoaster for me. But, like I always do, I just put a smile on my face and laugh it off. Honestly, I don’t know how much longer I can do that for. I feel like everyone is over it. I’m tired and everyone else is tired of me talking about it. Do you remember? Remember the beginning? 20 months ago. It’s a long time to pass. A long time for people to forget. Day 598 is just as tough as day 1.

I had a great turnout for my speech at the Atlanta Light the Night Walk back in October. I spoke to 20,000(ish) people about my journey. I had a great team and we raised over $3,000. I had a CT scan and the results were actually good this time around. All my tumors had shrunk as opposed to my previous scans that had mixed responses. I’d never gotten good scan results before. It finally felt like something was going right.

Team Remedy for Remedi 2016

 

I spent a nice Thanksgiving in Indiana with Justin and his family. I got to shoot a bow and arrow for the first time. I had a delicious Friendsgiving and lots of fun Christmas festivities so far. Justin and I picked out my first real, live Christmas tree. We made our first Christmas card. If I asked for your address and you were reluctant to give it to me, you missed out.

 

First time shooting!

 

Our REAL Christmas tree!

 

Christmas party with the gang.

Despite my hesitation, the few people who are still involved in my fight urged me to get a second opinion at Emory. So, I did. The doctor’s recommendations shattered my hopes a bit. But, I’m glad I went so I could hear another perspective. He had a suspicion that my cancer was still progressing even though my tumors had gotten smaller. Based on my history and how my disease progresses, it was possible that the brentuximab could be making the cells smaller, but they could still be growing at an aggressive rate. He called me a high risk patient because of my refractory lymphoma. He gave me some options that day. The first was to do some more chemo and then an allogeneic stem cell transplant with a donor. My sister has a 25% chance of being an HLA match for the donation. My parents would be a half match. The second option was to do a new drug that had little research and would ultimately eliminate any chance I would have of ever being able to do a transplant because of the increased risk of graft vs. host disease. I think there was a third option but I guess that one really didn’t seem appealing to me if I can’t remember it now. He said even with the transplant, I only have a 30% chance of remission.

Do you remember? The beginning. My first oncologist said, “If you were to get any type of cancer, this is the one you want.” He assured me that Hodgkins was highly curable and I had a 90% chance of survival. 598 days later… I am down to my last 30%. Well, I guess if you look at it, I really am beating the odds… since the odds were in favor of me surviving.

I got a PET scan because he wanted to confirm his suspicions of the aggressive activity in my cancer cells. CT scans show geography, size, the surface. PET scans show you what’s really going on inside. I went back to see him yesterday expecting a bad scan. But, to everyone’s surprise, it was relatively good. What?! How am I supposed to feel!? I’m so confused.

My PET scan showed that the activity and growth of the remaining tumors was actually a lot less than they had been previously. But, that doesn’t necessarily mean that the brentuximab is working. Again, since I am a high risk patient with a disease that does not respond typically to treatments, my current regimen could just be keeping the cancer at bay, not giving a good shot at remission or at least one that will last. So he gave me the same two options with a little bit of good news. Since my cancer cells aren’t as active as he had thought, this gives us more time to find a donor.

But, do you remember? About two or three years ago, Nina Louie was looking for a donor. But, the bone marrow donor registry lacks minority donors. Since transplant matches are dependent on your HLA match, race and ethnicity play a large role in finding a donor. Her sorority was able to get thousands and thousands of people registered, but she still couldn’t find a match through the registry. Thankfully, her life was saved by a miraculous cord blood donation and from what I gather, her and her family are doing well today. Can you imagine that though? Her doctor told her they would have to get 20,000 people registered to even have a chance at finding one match.

So here I sit, 598 days after diagnosis with a 30% chance of remission. I’m going to keep fighting until I’m at 0% (or 100%… that’d be better, right?!). I’m going to do it with a smile on my face… most days, probably not today, but most other days.  I will tell you waking up on day 598 is a lot harder than day 1. But, you can’t expect people to stick around that long, can you? You can say I’m being dramatic, but I don’t care. There is a difference. There is a bittersweet pain. I will be forever grateful for the people who have been there for me through donations, gifts, text messages, cards, food, fundraisers, hospital visits, etc. But, I will never be able to repay the ones who have been there since day 1 until day 598. Those people, and they know who they are, are my heroes.

I’ve changed a lot since I heard those three words, “You have cancer.” Part of me mourns the person I used to be. Bubbly and energetic. Always optimistic. But another part of me is happy with the way cancer has shaped my point of view. Even though I’m exhausted, I don’t let life pass me by because it could be gone in a moment. I let people know how I feel. I spread the love wherever I can because one day, I might not be able to anymore. Imagine how awful that would be.

People say the holidays are a rough time. So I hope you remember – everything you have to be thankful for. The people you love. The people who love you. If you were to die tomorrow, would you be happy with the life you’ve led? The things you’ve done? The things you’ve said? I think about that every single day.

This was a random, emotional blog post. It may not make any sense, but I think it was long overdue. I can’t leave you all without one last call to action. Give this holiday season. Even if it doesn’t help me, it will help someone. Atlanta Blood Services is in a constant platelet shortage. As some of you may recall, platelets are essential in stem cell transplants for recovery. You can also join the national bone marrow donor registry with a quick swab. Do it for me because I can’t donate myself. Do it for someone else because you could save their life. Do it for yourself because we are all capable of being heroes.

~SL

Busy September

Since Labor Day, I feel like I’ve been so busy. I spent the two weeks after we got back from Asheville packing up all of my stuff and moving it to Rome. I also had a lot to do for my parents. I think they were trying to get the most out of my unemployment before I moved out. I also tried to hang out with as many people as I could before I moved because I will probably be around less people now that I live farther away from the Metro Atlanta area.

I had my first day of work on September 16. It was just orientation. Lots of human resources stuff, going over policies, talking about insurance, etc. There were 4 of us that day, but I was the only one who was going to be working in the district office. The other 3 were also going to the clinical side of the public health department. I was the only one going into emergency preparedness (EP).

So I’ve been on the job for a week now. My first week felt really busy. Since I work in the district office, we provide support down to the county level. Our district oversees 10 counties. The only days I was in the office for the whole day were Monday and Friday. We went to Dalton, Cartersville, and somewhere else that I can’t remember. The team I work with on a regular basis is 5 people. We have the smallest department in the district, but they’re all really into food so it works out.

We have a giant EP truck. It’s a Ford F-350 Super Duty fully equipped with all the emergency sirens and lights. I eventually have to learn how to drive it… while also pulling a trailer. We’ll see how that goes since I can barely drive my Jeep.

I went to a Georgia Emergency Management and Homeland Security (GEMHSA) Area 1 meeting that had the Georgia State Patrol aviation demonstration. I went to an SNS (Strategic National Stockpile) training. Then, I went to an interstate emergency preparedness meeting between Georgia and Tennessee. Alabama was supposed to be there, but they’re pretty busy. It’s a lot of traveling, but I get to meet a lot of people. And I’ve been learning a lot! It’s crazy that I get to work in a field that I actually got my degree in and wanted to work in.

My boss is really supportive and encourages us to go out to do personal and professional development. So far, I’ve just been tagging along to everything I can so that I can learn everything about our district and meet a lot of other people in EP. My actually position is the training coordinator. So eventually I’ll be providing trainings for the district pertaining to different EP topics. I’m so glad I don’t have a job that’s just sitting behind a computer all day.

GSP Search and Rescue Aviation Demo

GSP Search and Rescue Aviation Demo

I’ve also been slowly decorating my office. Everyone knows how much I hate empty walls. I have no windows. So I have a lot of walls to decorate. Everyone in the office has been so nice and welcoming though. Sine it’s a public health office, they’re very into wellness. One of the execs even bought a bunch of bicycles and helmets for the staff to use on our wellness breaks. We’re right next to an abandoned hospital campus so there’s a lot of space to ride around and walk. There’s also Zumba classes twice a week. But, I’d probably pass out if I tried to do Zumba at this point.

Overall, it’s been going pretty well. I hope it only gets better from here!

I went to a young adult cancer meeting last weekend. A group of 5 of us met with the survivorship coordinator at Northside Hospital. We basically talked about our stories and what we liked and didn’t like about being treated at Northside. I was the only one with Hodgkin’s and who had gotten a stem cell transplant. She was very interested to hear more about my BMT experience since I told her I hated it. But, it was nice to get together with a group of young cancer survivors and just complain. The survivorship coordinator said she wants to build up a program to cater towards the unique needs of young cancer survivors. We don’t want to walk into a support group and just talk about writing wills and dying.

Young adult cancer survivors!

Young adult cancer survivors!

Other than that, I haven’t been up to much. The walk is less than two weeks away! I’m excited. I’ll be speaking at the opening ceremony this year. There’s still time to sign up for the walk!

Join our team to walk with us on October 8: https://registration.lightthenight.org/event-selected/44185/team-selected/432653

Can’t make the walk? Make a donation to our team here: http://pages.lightthenight.org/ga/Atlanta16/RemedyForRemedi

That’s all for now!

~SL

Radiating

I’m officially past my 100 days post-transplant. The pain in my lower back was getting really bad. I ended up in the emergency room for it. They were finally able to see on a CT scan that there was a tumor growing against my spine. So my oncologist decided it was time to look into radiation. They sent me home with painkillers and steroids.

Today, I had my consultation with radiation. We went over medical history in depth and watched a really boring video about how radiation works and what the process was going to be like. I also met my radiation oncologist and she went over everything with me again. It was one of those nice doctor talks where you actually understood everything she says. I like her.

We did a simulation after that. This is when they put you into a CT machine to take some final measurements of the tumors so they can consult with the treatment team about how to approach the tumors. They also made an air mold of my legs so that I can stay still during treatment. That was weird. Now, when I come in, they just put my mold down on the table and I just get in. The radiologist also marked where they would be pointing the lasers. So, I have 3 x’s on my stomach.

We’ll be starting with 10 treatments, everyday for 2 weeks Monday-Friday. Each appointment is very short though and only lasts like 30 minutes. Radiation is very quick. They said to expect some nausea and fatigue with a bit of a sunburn. Everyone survivor I talked to said radiation was much better than chemo though. I’ll still be continuing the brentuximab too.

My first radiation treatment begins on Monday. So I decided to take a quick trip to New York this upcoming weekend to visit my grandma and spend time with my family before everything gets started up. That’s pretty much it for my cancer treatment at this point.

My sister has been home since she just graduated. We took a family trip with Justin last weekend to Chattanooga. We mostly walked around a lot and ate at some good restaurants. We took a lot of pictures. Chattanooga is so scenic. Everything is so pretty! But, it was a quick drive from Atlanta and it was nice to get away for a bit. We stayed at a really cute AirBNB with a really dangerous driveway.

This past month, I’ve also been interviewing for a job. I had my first interview before I went to Baltimore. I had my second interview when I got back from Baltimore. After getting fingerprinted and passing my background check, I was given an official offer. Starting on September 16, I will be a training and development specialist for District 1-1 of the Georgia Department of Public Health.

It’s been over a year since I graduated. I have been waiting to finally use my degree. Everyone told me I was paranoid about not being able to find a job after going through all this treatment. I guess they were right. But, it’s hard for me to get too excited about this because last time I got excited about graduating and starting work, I got cancer. Fingers crossed that nothing goes wrong.

But, I am excited to start working again, especially in emergency preparedness. It’s exactly what I wanted to do after I graduated. It’ll be nice to have something in my life that doesn’t revolve around cancer.

So, there are a lot of things happening right now. It’s exciting. It’s scary. I’ll let you know how it goes.

~SL

Plan E

UGHHHHHH. That’s pretty much summarizes all of my feelings for the past few weeks.

I went to my BMT doctor to go over my PET scan results. All he told me was that it seems like my lymph nodes in my abdomen and pelvis are “starting to warm up again.” So, he ordered another biopsy of my left axillary lymph node again. That’s my armpit. Well, I got those results back today and all it confirms is that I still have cancer. Awesome. Thanks.

I’ve still been in this incredible abdominal pain. It spreads to my back and my legs. I barely want to move. I want to sleep, but it hurts too much. I can take narcotics like oxycodone for the pain but it makes me feel so crappy and backs me up. I’m already having abdominal pain. I don’t want to have anything stuck in there either. I’m so gross. So I basically live off of tylenol. I’m probably ruining my kidneys, but I have no other relief other than all of these heating pads that Justin got for me. I can’t even eat anything because my nausea is so bad. I throw up about every other day. The most I can eat in a day is a PopTart. I’ve lost about 15 pounds.

My doctors are pretty confident that the autologous stem cell transplant didn’t work on me. My BMT coordinator said I should start trying to find a way to have a caregiver who can be with me for 6 months after an allogenic transplant (stem cell transplant with a donor). Who has time for that? Who has money for that? I’m so tired.

Until they can figure out with they want to do with a second transplant, we’ve started on brentuximab again. Today was my first day. They want me to do 16 cycles so I have an appointment in a couple weeks to get another port placed in my chest. They had to stick me 3 times today to get an IV in for my treatment. My veins are dead. If I had a nickel for every person who has called me a pin cushion, I would have… probably a whole dollar! I have had the best results with brentuximab so let’s hope that keeps up.

My doctor finally got me a consult with a GI doctor for next week to figure out what’s going on with my abdominal pain. I’ve diagnosed myself through WebMD and I think I have a stomach virus. But, I can’t fight it off because my immune system is still rebuilding.

So I’ve just been in a bad mood for the past few weeks because I’m in so much pain all the time and I can’t seem to catch a break with any good news at all. Someone give me good news!

Alright. I’m done with my rant now. Let’s hope I have some better news next time. Until then! Thanks for letting me complain.

~SL

A Month Later…

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

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

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

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

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

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

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

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

Circle of Hope at the LLS Fundraising Event.

Circle of Hope at the LLS Fundraising Event.

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

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

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

Chinese New Year dragon dance.

Chinese New Year dragon dance.

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

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

Free brunch courtesy of Dinh's bonus.

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

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

~SL

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