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

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