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

Post-Radiation

I officially completed radiation therapy last Friday. I did 10 treatments total. I had to go in every day for two weeks excluding weekends. Each appointment is very quick. They radiate me in three different areas from the front and my sides. You lay on the table and the radiation machine rotates around you. The whole process only takes about 10 minutes. I explained a lot of the process in my last post so I won’t repeat myself. But, here is a helpful website and video I found about radiation therapy and how it works.

The doctor and radiologist told me that radiation has a cumulative effect. So as the treatments start to compound together, I won’t feel the side effects or benefits until up to 6 weeks after treatment has ended. I still have pain in my back but it’s nothing compared to what I was feeling before when I had to go to the emergency room.

I’m starting a new chemotherapy drug this week that is supposed to help with the bone metastasis. It’s supposed to make me really achy and sore. Let’s hope that doesn’t happen. I’ll be continuing with my brentuximab treatments once every 3 weeks probably for the next year.

I start my job on September 16. I’ve slowly been moving my things to Rome. I didn’t realize how much stuff I had. But, the move has been making me and Justin clean out all of our junk, which is good. I’m excited to start working again, especially in the field that I was actually trained for. That usually never happens. It will be sad not being able to run errands in the middle of the day while everyone else is at work. But, still excited! I can’t wait for government benefits and to be off of Obamacare.

For Labor Day Weekend, Justin and I went to Asheville, North Carolina with a few of my friends. We got a nice AirBnb so there was plenty of space for the 5 of us to relax in the mountains. We all arrived at the house late on Friday night so we didn’t do much except play some games. The next day, the guys went on a crazy, difficult hike. Amanda and I stayed back with the dogs. We explored downtown Asheville and walked around a lot. We ate at this popular breakfast spot called the Over Easy Cafe. Everything we ordered was so good. We explored around the Grove Arcade (where I bought fudge) and found a really cute bee/honey store called the Asheville Bee Charmer. We also came across some arts and crafts markets. There’s a lot of people on the street doing live music, too.

Our Uber driver later on in the weekend told us that there’s a law that doesn’t allow any chains in the downtown area. The only chain restaurants that are currently downtown are only there because that’s where the chain started (Tupelo Honey Cafe and Chai Pani). You can’t close down the original. That’s why all of the restaurants are so good!

The people there are pretty nice too. There’s a very young, hipster vibe. All of the restaurants serve tofu and tempeh. Everyone brings their dog everywhere. People are so outdoorsy. And the weather was perfect all weekend!

We hung back at the AirBnb Saturday night and made a steak dinner to watch the UGA game. Go dawgs! Then, we played some more card games and called it a day. The guys were pretty tired from the 7 hour hike. Everyone passed out pretty much before 10 PM that night.

On Sunday, we cooked breakfast and headed out to go tubing. The river was so wide so everyone could spread out and it didn’t seem crowded at all. The scenery was so pretty and the water wasn’t that cold… once you got used to it. We got back, cleaned up, and headed out again. We explored some more of the downtown area while we waited on our dinner reservations at Chai Pani. There’s a lot of cute stores downtown and a lot of places to just hang out. I bought some tea, spices, honey, fudge, books, etc. Support small businesses! Another place we hung out for a while before dinner was the Battery Park Book Exchange and Champagne Bar. We didn’t have any champagne. They also had coffee, wine, and other drinks. But, they had so many books and fancy special editions. You could also bring your dog there so there were a lot of cute pups there too. It’d be a nice place to do a happy hour and just relax.

After dinner, we went to Burial Beer Company since Asheville is known for their breweries. We caught some fireworks from the back porch there, too. Then, we walked down the street to the Wicked Weed Funkatorium, another brewery but they only had sours. Have you had a sour beer? It is… sour! Some of the beers were good. Others were way too sour for me. After that, we headed home and played BANG! until we couldn’t keep our eyes open anymore.

On Monday, Justin and I had to head home earlier than the rest of the group. After breakfast and packing up the house, we went back downtown to walk around some more while the other half of the group took the dogs on a hike. The drive was only about 4 hours for us. But, the scenery was so nice we actually stopped at one of those scenic stops along the side of the highway to take some pictures. It was a nice weekend away before more moving and starting the new job.

The whole group in front of our AirBNB.

The whole group in front of our AirBNB.

In other news, I’m doing the LLS Light the Night Walk again this year. Here are some links for that.

To register to walk and be on my team, go here. The walk in Atlanta is at Centennial Olympic Park on October 8. Everything starts at 5 PM and the actual walk won’t begin until the sun goes down. There’s a good chance I’ll be speaking at the opening ceremony too. It’s a two mile walk and it’s family and pet friendly!

To donate to my team, go here.

To buy a team t-shirt, go here. Shirts will only be sold until September 16 so that there’s time to ship them and get them in time for the walk. So there’s ONLY 10 DAYS to order!

Thanks for the support everyone! Hoping for another big turnout this year!

~SL