September 20th, I had a pulmonary function test appointment. I had been having trouble breathing for about 2-3 weeks, so my oncologist wanted to check my lungs. At the appointment, they do 2 tests to check the pulmonary function. For the first test, you walk up and down a hallway for 6 minutes, while they monitor you. For the second test, they have you do multiple breathing exercises. I took this test before I began chemo, so they had base results to compare the new results to. Now we wait for the results to come back.
The next day was the fall golf outing for my family’s foundation. We had a lot of fun with friends and family. It was a great distraction from waiting around. My last chemo couldn't be any closer! I was excited to finally get back to a normal life. I wanted to visit school more and make plans!
September 24th, my last chemo day was here! I was all ready for them to start the chemo when my oncologist came by the infusion room. She explained that the pulmonary function test came back and there was a large decrease in the percentages from the first test compared to the one I just took. When this happens, it could mean that the lungs are being scarred and damaged. One of the drugs in my ABVD regiment is Bleomycin. This particular drug is known to cause extreme lung damage. When this is suspected, they take the drug out of the regiment. She told the nurses to only administer AVD, the other three drugs. She explained that she wanted to schedule a CT scan of my lungs that week. She then started talking about 4 more treatments followed by radiation treatment. I immediately stopped her and asked "what do you mean 4 more treatments? You said today was my last treatment." She repeated herself "yes, 4 more treatments followed by radiation." I was having a PET scan the following week, so how could she know I needed more? She didn't have an updated scan. I was furious.
I think she could see the steam coming from my ears because she kept repeating how great and strong I am. I wasn't sure whether I should cry or scream...I decided not to do either. Probably not the best thing to hold that in. I tried asking her to explain why she was adding these treatments, but she didn't really have much to say. Her only answer was "because of how big the tumor was." Hmmm...that's confusing because the size of the tumor before I started treatment didn't change and she originally said this would be my last treatment...so what changed?! 4 More treatments would bring me to November 19th and then I would have to do 2-4 weeks of radiation. This was the worst news.
Radiation is a controversial area in the medical world for women under the age of 30. This is because it can cause you to develop other cancers in the future, such as breast cancer. We wanted to get a second opinion about the radiation and now the 4 more chemo treatments that my oncologist wants me to do. A doctor at Sloan Kettering was recommended to us. He is the chief of oncology and was a specialist on Hodgkin’s. We were able to schedule an appointment with him on October 3rd.
September 30th, I had my PET scan. Everything went well. We were going to have to pick up the results of this test before we go to New Jersey for the second opinion. September 30th was also the cancer support field hockey game. My sister, Maddie, is a senior on the CV field hockey team. They were kind enough to say some nice things about my family and me before the game. My sister, cousin (Alyssa) and another girl on the team all made ribbons to hang up in support of me. Throughout the game the announcer would read who each player was playing for. It was a very special night.
I woke up on October 3rd with the jitters. I was so nervous to hear the second opinion. We had a three-hour drive ahead of us, so we got on the road around 10. The Sloan Kettering Cancer Institute was beautiful. It was very modern and homie. We were brought back to a room and the physician’s assistant came in. She went over my entire history with us. We had all of my reports and scans sent over for them to look at. The PA took that information and the newest PET scan to consult with the doctor. She came back shortly after to ask us how to get in contact with my oncologist. They wanted to ask her why she wanted 4 more treatments. My mom, dad and I all started sweating and trying to think of the fastest way to get in touch with her, when they called, there was no answer. The doctor finally came in and provided background information on Hodgkin’s and the treatment methods. He talked about how the methods have changed and evolved. Tumors are categorized as bulky and non-bulky. My tumor was 6cm and a bulky tumor is typically around 7cm or more. This has a lot to do with determining if they should strongly consider radiation for a woman under the age of 30. The doctor told us that my tumor is not considered bulky... he said if you want to call it anything, call it chunky, lol. He continued to tell us that he would say absolutely no to doing radiation. Yay!! We are off to a great start with this second opinion. My heart was racing… what was he going to say about the chemo's? He went on and said "now, I am saying this with a big asterisk next to it because I haven't talked with your oncologist yet. But I believe you are done." My scan showed that I was in full remission. No more chemo or radiation! I had the biggest smile on my face. He wasn't sure why my doctor wanted me to do more. He was joking around and said maybe she has some secret information that he wasn't seeing. I had an appointment scheduled with her the next day so he was going to try and get in touch with her by then. "She could continue to disagree with me", he explained that if that happens the case would be brought to the Sloan Kettering Board. This is a panel of doctors that would review the case and make the best decision. He got up to leave the room and gave me a big hug and gave my parents hugs. He was incredible. When they were gone, my mom looked at me and said "aw, you didn't get to ring the bell." I broke down in tears and said, "that's okay." It was a happy cry of course! My parents both came over and gave me the biggest hug.
We were all ecstatic and were basically skipping to the car. We were ready to go, and my dad broke down in the car...it was the sweetest thing. I was able to get the best picture of my mom and dad hugging. We stopped at a pub and celebrated a little. We basically told everyone by the time we got home.
The next day I had a packed schedule. I had hydration, a CT scan of my lungs, and an oncologist appointment. At hydration I told my favorite nurse that I was done. She put together a certificate that all of the nurses signed. I decided that I would ring the bell. I was a little embarrassed when we were walking to the bell and the nurses were yelling "we got a bell ringer!" All of the nurses gathered around to watch. I read the note under the bell and then rung the bell 3 times! My dad was crying again, and I was tearing up as well.
My CT scan wasn't for a while, but we checked in early and they were able to bring me right back. My oncologist appointment was next but when we went to check in, she was 2 hours behind. I was so annoyed. We decided to go to my pulmonary doctor appointment and come back to the oncologist after. The pulmonary function doctor wasn’t too concerned about my lungs. They seemed to think prednisone will clear everything up. There was no scarring on my lungs, and they did not look too inflamed anymore. We finally got in for my oncologist appointment and she tells us that she talked with the other doctor. She continues to tell us that she agreed with him on not having to do radiation, but she still disagrees on not doing 4 more treatments. This means the case is going to be presented to the board. I was fuming. She then started talking about scheduling more scans and appointments that I felt were unnecessary.
The happy vibe changed after this appointment. Now my parents wanted to go with whatever the board says. I know I am not a doctor, but it seemed ridiculous to not follow the new procedure for Hodgkin’s, which was 4 cycles and then waiting and watching. My grandpa called me on our way home and wanted to take us to dinner to celebrate. There was a little arguing because of our differing opinions but we got over it and went to Flinchy's. We stayed after dinner for some drinks and had a great time.
Olive turned 6 months on October 9th, I felt like I had just got her. Time was flying by. It was also my sister's senior night for field hockey. I can't believe how old she is getting. I still feel like she is so young but she has grown so much, and I am so proud of her. She had an amazing season; it was really special for me to be able to be there for her.
My cousin, Kaila, came home from school that weekend and we went to Jason's Woods with our sisters. I love Halloween time! Scary movies and attractions are my favorite.
This week was a waiting game. We hadn't heard anything from the board yet. Everyone was tense, but I know the board will make the best decision for me. If they want me to do more, I am going to freak out though. My hope is that they will side with the second opinion. I was so excited because I was planning a trip to Disney to meet up with my friend, Erin. She is a part of the Disney College Program, so she gets free tickets to the park. My grandma also has some frequent flyer miles that would let me fly for free! Everything was falling into place.
October 14th was the halfway mark of the semester. I had been taking 2 classes that last the whole semester and now 2 more classes will start on top of that for a total of 4 classes for the rest of the semester. My Chi O little, Sam, was turning 21 Wednesday the 16th. Her party was the night before on the 15th. I drove down and made it for the party just in time. I stayed at school for an entire week and had so much fun. I celebrated with my friends and was even able to make it to the best social! Seeing everyone made me so happy. The board met the Wednesday morning that I was there, but we still didn't hear from them. I texted my parents everyday asking if they heard anything. My dad finally called me on Sunday and told me that they talked with the doctor and the board came back with a split decision. Half agreed with the 4 more treatments and half didn't. The doctor we met with told my dad that they made a very strong case for why I should do the 4 more treatments and that I should do them just to be safe. My dad also said that I needed to come home Monday because he scheduled chemo for Tuesday... so we could get started. I was so upset. I was feeling great at this point and didn't want to go back to feeling like crap. I am glad that I was with my friends when I got this news, they are so supportive and helped to cheer me up and make me feel better.
The start of the 4 more treatments was on October 22nd. This really sucked because now I wouldn't be done with treatment until December 3rd. This meant no Disney, no more school visits, and It was cutting it close to the cruise. I swear I have some bad luck. I needed to breath and remember one step at a time. I still had an end date and it would be here before I know it.
Today is the day you worried about yesterday. Take each day one at a time. The past is over.