Give Me Strength

Today has been by far the worst day of this 2+ year battle with cancer. I have been struggling with extreme side effects from this pre-transplant treatment of Rituxan and Revlimid. I may have mentioned before, but I’ll repeat myself for those who haven’t read my recent(ish) posts. Rituxan is an infusion that I get once a month. Revlimid is a chemo pill that I take for 21 days straight with one week off in between cycles. It’s not a typical treatment for Hodgkin’s patients so there’s not much research about the side effects specifically for Hodgkin’s.

I have been in so much pain. I came home from work one day unable to walk or move at all. I refused to go to the hospital so I just took as many painkillers as a could and went to bed. But now, I wake up in the middle of the night crying because everything hurts so much. My first ER visit within this month was because I woke up in the middle of the night in excruciating pain. It felt like someone was crushing all of the bones in my legs. I couldn’t walk at all. Justin had to carry me to the car basically and immediately get a wheelchair when we got to the ER. Of course, no one at the hospital knew what to do. My history is complicated so that’s understandable. He called my oncologist’s office to talk to the on-call doctor. She said to call when they open the next day to get an emergency appointment. They gave me more medications and discharged me.

I had already told her my legs had been hurting for a while now but she just said it was a side effect of the new chemo and it would get better after my body got used to it. There was just some hardening on my L 1 vertebrae from radiation.

When I got to their office the next morning, no one knew why. She had me get an MRI to see if there was something they were missing. But, it came back fine. So we just kept going with the treatment. The pain just got worse and worse. Then, they ordered a PET scan to check if the cancer had spread.

At my next infusion, the LPN said that my PET results were good but not much else. I told her I was still having pain. My white blood cell count also came back very low. I was still able to get my Rituxan infusion, but she said to take an extra off week for the Revlimid.

Just filling the Revlimid was a pain. You have to be registered with Celgene, the only company that makes the drug. 21 pills costs around $30,000. I had to call my mail order pharmacy with only 30 minutes to spare to get my pills in time after a runaround with authorization codes anyway. I finally got my 20 mg pills scheduled for delivery in time for my next cycle. But since my oncologist decided to change my dosage to 10 mg, I have to go through the entire process again. My LPN sent the prescription to a Publix pharmacy nowhere near where I live. When I got that corrected, they called to tell me that they’re not part of the Celgene program so they can’t dispense the medication anyway. I called Celgene and they’re not even sure the insurance company will pay for this one because I just got it filled and they can’t take medications back.

Last night, I woke up again in pain. This time it was all in my back, pelvis, stomach, and sides. I had tightness in my chest. I threw up twice. It didn’t feel right at all. So I woke up Justin to go to the ER. They did a chest x-ray and a CT. Everything came back fine. They gave me some potassium, prescribed me some more pain medications and anti-nausea medications and discharged me. I decided to go to work because I was just going to a training today. I was struggling to stay awake. I wish I could tattoo my forehead with, “Please don’t judge me. I have cancer.”

I feel like a giant burden on everyone: my family, my friends, Kelsey, Justin. I feel like people are tired of me complaining about cancer. It’s so hard. I know I’m saying I’m tired all the time, but this is just too much. Just waking up in the morning is such a challenge. I feel like I’m not myself anymore. I can’t do any of the things I used to love. I can barely walk. I try to stay positive and not allow it to affect my work and relationships, but it’s so hard. I just cried so much today.

What kind of life is this? How do people do this with kids? Why won’t the doctors just listen to my complaints the first time? I feel like they’re not listening to me. I don’t want to do this anymore. I want to live a normal life. Even after this is all over, there’s so much more that could happen. It’s hard not to think about. This will never end for me. I just want to live my life.

People keep calling me a hero. I’m not a hero. I’m not a fighter. I’m just trying to hold on. I’ve accepted that I may not make it. I hope other people will too. I’m not saying that I’m giving up. But, sometimes there are other plans in your future. But, I will keep going. I know that the more I endure means less for someone else.

Two years. I have had cancer for two years when my first oncologist told me it would take 6 months to cure. I want this to be over so badly. I want my life back. It’s getting harder and harder to put a smile on every day. I just need some good news that’s not immediately followed by bad news. I need something. I need anything. I can’t live like this anymore. It’s so hard. I just couldn’t be happy today.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

~SL

Spring Awakening

So it’s been quite a while since my last post. A lot of people have been asking me about it. I have been exhausted lately, but that’s nothing new. As this journey goes on, I feel like it gets harder and harder to write about. It seems like every time I get a bit of good news, it doesn’t last long. But, let’s see what’s happened since December.

We found out that my sister is a perfect match for my stem cell transplant! There was only a 25% chance that she would be a perfect match because… genetics. So we were all really surprised about that.

I started my new treatment of Rituxan and Revlimid. Rituxan is an infusion that I get every 4 weeks. It takes a while to infuse because the rates have to be slowly increased over every 30 minutes. My first treatment took a little over 4 hours. It’s a lot rougher than the brentuximab. The side effects are still the same. Nausea, fatigue, etc. It’s just a little more this time around.

The Revlimid is a daily chemo pill. I take it for 21 days and then I’m off for a week. It’s mostly been used in non-hodgkins patients so the side effects for hodgkins aren’t really known. But, I’m sure they’re similar.

I developed a really bad cough after I started this treatment. It is a side effect of the Revlimid. When I went to see my transplant doctor this past Monday, he sent me to radiology for some chest x-rays. It turns out that I have pneumonia. So now I’m just stuck at home resting.

Right before I started this new treatment, I got word that my grandmother had a very serious stroke. Justin and I flew to New York the next day. They took her off life support that Saturday around 3:30 PM. Justin and I weren’t going to land until Saturday night at 11:15 PM. The doctor told my mother that my grandma wouldn’t make it until then. We finally landed and I heard from my cousin that my grandma was still hanging on. They said she was waiting to see me. My uncle said the day before she had the stroke, she was talking about how she was excited for me to visit in April and how she wanted to meet Justin. I guess she hung on long enough to see us. She finally passed on Sunday afternoon, despite the doctor saying she would only last a few hours after they removed the ventilator. We held her funeral and burial on Tuesday.

 

She has been ready to go for a while. We all knew it was coming. I’m glad she could finally be at peace now. But, I’ll miss her so much. It was nice to be around family. There’s so many new babies and everyone finally got to meet Justin. I think he was a big hit. I’m sure grandma would have loved him too.

Justin and I moved into our new home in February. It’s been great. We’ve had a few people over here and there. We’ve still got some organizing and unpacking to do. But, it definitely feels like home already. Our pups love the backyard and they get to run around a lot more. Our neighborhood is nice and quiet. We’re having an official housewarming in a couple weeks. I only have pictures I took at our inspection back in December.

Other than that, things have pretty much been the same. I’m just trying to take it easy and rest as much as I can. Things are still moving. I’m just getting frustrated with all the treatment and everything. It gets tiring. So that’s all… we’ll see how long it takes for another update. Thanks for checking in!

~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

Family Reunions and Tattoos

Since I didn’t have to start radiation until Monday, I decided to head up north to spend some time with my family. I had a trip planned already before I knew I would have to do radiation. Luckily, I booked with Southwest, so rearranging my dates wasn’t much of an issue. On Wednesday, my sister and I flew out from Atlanta to Baltimore. We had dinner and did some Pokemon hunting by the inner harbor. The next day we headed up to New York after breakfast.

Our first stop was my aunt’s house in Yonkers. My mom had filled my luggage with clothes for my grandma so I wanted to make sure I got rid of that as soon as possible. Luckily, my cousins were also there watching two of the kiddos, Leo and Avery, and my aunt was already home from work. My grandma is home all day, of course. My uncle is retired too. So it was already a full house. Three more of my cousins came over as they got off of work and we had a nice family dinner, while watching the boys.

The rest of the week and weekend was spent in Nanuet at my uncle’s house where my other cousins were visiting from San Francisco with their baby girl, Lyra. We hung around town on Friday and prepared for the family festivities on Saturday.

Lyra’s first birthday party was on Saturday and everyone came over to the house. There were so many babies! We had so much food too! My cousin, Vicky, and her fiancee, Ryan, also announced that they are having a baby girl due in January. It’s also my cousin, Victor’s, birthday next week. So, we had two ice cream cakes for him and Lyra. The steroids I’m on make me so hungry all the time so I ate everything… twice. Even after the barbecue, the kids wanted pizza. So we also ordered Pizza Hut… and White Castle. We always get White Castle when my cousin, Trang, comes up from Philly. It was crazy. And I ate everything. It was great.

I also got to talk to my cousin-in-law’s dad about his Myeloma. He’s already beat it once but he’s starting to get back pain just like I did. So we had a lot to talk about. It’s nice talking to other survivors who have similar experiences. He also had to do a stem cell transplant and I got to ask him what radiation was like. Please keep him in your thoughts as he goes through all the testing and processes to figure out what’s going on with his back pain and elevated blood counts. He’s been a survivor for so long and we need to keep it that way!

Since I had so much space in my luggage without all of my grandma’s clothes, I was also able to bring home a lot of food. I brought back 10 bagels for myself from my favorite place in the world, the Rockland Bakery. Best bagels ever! Sorry, Nyack Hot Bagels. I wish I could have brought home more. Ugh and so cheap. My mom also made me haul home 15 frozen baos for her. I got searched at security because of those. I also had 2 dozen of my aunt’s almond cookies that she always makes for me. So good!

Visiting Grandpa and Cau Dung.

Visiting Grandpa and Cau Dung.

Pictures with Grandma before leaving.

Pictures with Grandma before leaving.

I love going home. I love being in a loud, crowded house full of food and laughing babies. Family really is the best medicine. I wish I lived closer to them all the time. But, I know I’m pretty lucky to have such a big, supportive family. Even though they’re all across the country, they’re the best support system I could ever ask for. I can’t wait to go back.

Group picture. Still missing some.

Group picture. Still missing some.

I started radiation on Monday (yesterday). It’s… scary. I think it’s worse for me because of my fear of robots. Everyone at the cancer center is really nice though. I’m definitely the youngest patient there. But, everything runs very efficiently and I’m in and out in no time at all. Yesterday, my appointment took about 30 minutes, which is considered long, because they had to take some more scans and adjust the lasers and stuff.

When I get into the treatment room, they have my leg mold on the table. I just nestle myself into the mold and lay down on the table. Today, I didn’t even have to change into a gown so that cut down on some time too. They line you up with where they’ve marked your body for your treatment area. The first day, they marked me up and took pictures. This is so they know exactly how to set you up when you come in if there are different nurses and radiologists working.

Once they leave the room, the machine starts up. It’s so scary. Also, the room is dark so that doesn’t help. You just see these green lasers. But, those are the ones to align you. You don’t see the actual radiation beams. The machine is huge and it rotates around your body so you don’t actually have to move. It’ll zap me from the top. You know when they’re zapping you because it makes that loud, buzzing noise like when someone buzzes you into an apartment. Then, the arm rotates around and does my right side. Then, it rotates around again and zaps me from my left side. It’s so creepy. But, that’s it. It lasts like a whole ten minutes.

They said since I’m being radiated around my stomach, I’ll have some nausea and more frequent bowel movements. I have to go every day for 10 days, not including weekends. Since it’s a relatively short treatment, I shouldn’t get those radiation burns or skin irritations like other people do with longer treatments.

The treatment area on my abdomen.

The treatment area on my abdomen.

Left side mark ups.

Left side mark ups.

Right side mark ups.

Right side mark ups.

I also got my first tattoo! Not what you think. Once they find the treatment area and where the radiation beams have to go, they tattoo you in those spots so they don’t have to mark you every time. After my first treatment, I got five tattoos. They’re just little dots. I have three on my abdomen and one on each side. I always thought about getting a tattoo. I guess at least these have meaning to them now. Maybe I can make them into flowers when I’m done. But, even just the dots hurt, so I don’t think I could do it.

Tiny dot tattoos. I have two more on the sides too.

Tiny dot tattoos. I have two more on the sides too.

My radiation oncologist said I wouldn’t start feeling the side effects until next week. Right now, I just feel really tired after treatment. Who knew that getting zapped with lasers could make you so sleepy? But, I’m trying to power through because I have a lot to do before I start my new job on September 16. Yay!

I’d also like to give a shout out here to Jason, Amanda, Andrea, and Tricia for giving me rave recommendations for my job interview. You guys are awesome and I couldn’t have done it without you! I’m so lucky to have such supportive friends, managers, and supervisors who really care about where I end up. Thank you, thank you, thank you!

I'm moving!

I’m moving! Holla if you want to send me stuff.

I also have a double treatment day this week on Thursday. I have chemo in the morning and radiation in the afternoon. Sounds crazy. We’ll see how that goes.

One last thing. I’ve agreed to be a story teller at this year’s LLS Atlanta Light the Night Walk on October 8th! This is the largest crowd I’ve spoken in front of since my high school graduation. They’re expecting 10,000 people and I hope to see all of your lovely faces in the crowd! You can donate to my fundraising page here. You can join me and my Remedy for Remedi team on the walk by registering here. I’ll be unveiling a new team shirt design by the lovely Crystal Petersen at the beginning of the month, so be on the lookout for that so you can order yours and represent from wherever you are!

It’s been a crazy few days. It’ll probably be crazy for a while. Let’s do this!

~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

Day 54+

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

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

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

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

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

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

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

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

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

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

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

Avery Carter Kish

Avery Carter Kish

~SL

My Stem Cell Transplant

This is going to be a long post.

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

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

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

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

 

Pre-transplant prayer.

Pre-transplant prayer.

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

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

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

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

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

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

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

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

One arm. Two IVs.

One arm. Two IVs.

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

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

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

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

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

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

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

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

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

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

~SL