After three rounds, I think I'm getting the hang of things. Initially, I was under the impression that I would feel better and better with each round. In retrospect this sounds really silly, but I thought that I would be feeling better as I was getting better. I realize now that a lot of the side effects are cummulative and I'm slowly learning to listen to my body and be happy with doing the best that I can.
The second round was the hardest for me because like I said, I thought that I would feel better after each round. When I realized that the fatigue, taste changes, and other side effects would be cummulative, I was disappointed. But after about a week I was back to normal and feeling pretty good. The three weeks between rounds two and three FLEW by.
After this past round last Thursday, I have less energy but still feel like I'm doing better than after the second round because I was prepared for the side effects this time. My mom and Bryan were disappointed that I didn't say or do anything funny while on the Benadryl. I passed out as soon as it hit me this time. During the second round I was apparently very amusing.
I'm still skating and coaching at practice. I run/bike/swim when I feel up to it. I try to take it easy for about a week after treatment and then ease back into things. I think that it's mostly the fatigue that makes things difficult. It's hard to explain though because I don't feel bad, I'm in a great mood and I'm honestly not disappointed about anything anymore. I'm proud of myself for being able to keep doing as much as I am! It is the anemia that is hard to deal with because it makes me fatigued and light-headed. After each round it feels like I won't get back to normal and I adapt to my energy level and get used to the symptoms, and then one day I just feel better. I sort of think of it in percentages. After the first round I was knocked down to about 70% for a few days and then got back up to like 90%. After the second round I went down to 60% for like 5 days and then got back up to 80%. This time I think it dropped down to like 60% again, but it took about 8 days to get back up to maybe 75% of my energy. I don't know if that makes sense to anyone but me, but it helps to write it out like that. Yesterday was the day where it snapped back to feeling good for me. I wasn't able to do much because of the light-headedness for a week, but then all the sudden I just felt fantastic!
My boss told me, during all the fatigue, that I'm just getting a taste of what it's like to be "mortal." She said that now I have the energy of a normal person as opposed to a superperson. I guess chemo is my kryptonite, it knocks me down for awhile but eventually my powers return.
The way I see it is that I'll be so used to fighting through the chemo that when it's all over I'll feel better than I could have ever imagined before! Plus, as much as it's killing me not to do contact, I know I'm going to hit twice as hard just to make up for lost times.
Right before I went in for the third round we received GREAT news. And when I say GREAT, I mean it! After just two rounds of chemo my PET scan was clear! Which means that I still have to finish treatment, but the prognosis is awesome!
My name is Eva Paxton. I've also been known to respond to Buster Skull (my roller derby alias) and more recently, Chemo Sabe. I'm 19 years old and on December 20, 2010 I was diagnosed with non-Hodgkin lymphoma.
On December 11th I ran a 5k (and got my best time, I might add). That night I went to sleep and woke up at 3AM with shortness of breath and chest pain. I knew something wasn’t right, so I went to the ER. As soon as I arrived they gave me toradol, which is like Motrin, and my pain immediately subsided. They did a chest x-ray and a CT scan, but I was feeling fine. I was ready to pack up my stuff and go home. My boyfriend, Bryan, and my mom were with me and I told them that I was embarrassed for coming to the hospital with (what we thought was) muscular soreness from the run. Then the doctor came in and told us that there was a fleshy tumor in my chest. We called my dad, who was on his way to the hospital, and my sisters. Pretty much immediately we all realized that there were two options: malignant or benign. As we waited to find out the next step, we made jokes to pass the time. There is no point in facing anything without laughter. I wasn’t scared because I didn’t know what to be scared of at that point. They discharged me from the hospital with some pain medicine, that I never needed, and an appointment to come back on the 14th to meet with the tumor board.
The ER visit was very early on Sunday and I met with the tumor board on that Tuesday. During those two days, I started preparing myself for every possibility, but we still had hope that it was benign. At the appointment I met with the thoracic surgeons and they discussed the options with me. I could have had a needle biopsy, which would have been less accurate, or I could do an incisional biopsy so we would know for sure. From the start, I just wanted to get started and get better. I can’t stress enough the importance of good health care workers during something like this. The thoracic surgeons were honest, caring, and incredibly assuring. They told me that if it was benign I would have to have a large surgery to remove the whole tumor, but if it was malignant then I wouldn’t need a surgery because chemotherapy would take care of it. Obviously, surgery sounded more appealing than chemo, but the doctor’s told me that they would take care of me either way. They said that my prognosis is the same whether it’s lymphoma or if it is benign and requires surgery. I could tell that they thought it was lymphoma because the tumor was baseball sized and in my anterior mediastinum (front of my chest), and both of those things suggested lymphoma. I went in for the biopsy that Thursday, the 16th and got the results on the 20th. They told me that I had B-cell lymphoma. I still wasn’t scared because I was prepared for it to be lymphoma and I knew that with treatment, I would be okay. To me the only difference was how long it would take for me to get better. I would have started chemo that day if I could have.
I’ve never asked “why me” because I find it pointless. A friend and survivor told me “No one deserves it, but some people just get it.” Since my diagnosis, I have been surrounded with support from my family, friends, everyone on my roller derby team, and more people than I can even think to name. I prepared myself for a fight right away: I went to the library to stock up on books, contacted people with lymphoma and everyone I could find who had been through chemo, went to the Cancer Support Community, started journaling, kept working out, and stocked up on my “chemo food” recommended in my books and from survivors.
The first thing I wrote in my journal was a quote from Hugh Downs, “A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes.” I have always lived by that philosophy. I see my battle with cancer as an affirmation of my beliefs. Instead of facing chemo with dread, I decided that I am excited for a challenge. I work as a physical therapy tech and I see how successful people are when they have a good attitude. I always wished that I could convince people that they can choose to be happy regardless of their situation. But it’s hard to convince people of that when you haven’t been through any really trying circumstances. So when I found out I had lymphoma I decided that I would show people that you can remain happy and in good spirits no matter what. The way I see it is that everyone has a limited number of days, and I choose to make every day a good day. Of course, I know that I’m allowed to feel sad, but I just don’t. Being sad is a waste of time and I choose to be happy. The day I went to the ER with pain was a good day, because of that pain we found the lymphoma while it was still in stage one. The day I had the biopsy was a good day because we were making progress and because I was surrounded by people who love me. The day I started chemo was a good day because I was one step closer to being cancer free. And I’m happy that all of this is happening now because I start my clinical classes in the fall.
I knew right away that I wanted to show everyone that happiness is a choice and that by being positive I will have strength and success. After the diagnosis I got my PET scan, bone marrow biopsy, second opinion, got my port, had my tonsils biopsied, and started treatment. My actual diagnosis is “primary mediastinal B-cell lymphoma,” because the only tumor is in my chest. It is a relatively new type of lymphoma (named within the past two years), so there isn’t much information about it in my books. In the PET scan, only the tumor in my chest and my tonsils lit up. My doctor was pretty sure that the tonsils were lit up due to a slight infection and she was right. If the tonsils had turned out to be cancerous, then it would be diffuse B-cell lymphoma. The only differences in primary mediastinal are that it starts in the chest and tends to be more aggressive.
I remember the day after my diagnosis I was on the phone with one of my favorite teachers and he asked me what my prognosis was. I had already been reading up on everything, but somehow I hadn’t read about the prognosis. It hadn’t even occurred to me that there was a chance I wouldn’t be okay. After I got off the phone, I looked it up. Some sites said as low as 50% and others said as high as 90% (for the five year survival rate). Everything I read said that being young and healthy would benefit me, so I decided my prognosis is 100%.
I wouldn’t change anything if I could, but I know that the only reason I am able to say that is because of Rituxan and the other drugs that are saving my life. Other cancers aren’t as treatable, but I have no doubt that they will be because of the funds we are raising for research. I am fundraising so that others can have treatment and have the same prognosis as me- 100%. I’ve never had any doubt that I would beat this, but I think it’s harder for my family. I can’t imagine how worried I would be if one of my loved ones had cancer. I know that my parents, sisters, boyfriend, and friends are worrying about me constantly. I am fundraising so that when a child is diagnosed with cancer, their parents first thought can be of hope instead of fear. I hope that one day everyone can face cancer with the same attitude as I have been able to, and I know that through research, that will be possible.
We can’t control our circumstances and our position, but what we can control is how we handle our circumstances and our disposition. I can’t prevent other people from getting cancer, but I can do everything in my power to help them get better and provide them with support. That is what I’m doing with Team in Training and that’s what every member of TNT is doing. Life is too short not to enjoy every minute and to help other people enjoy their lives.
I have had one round of chemo so far and go in for my next round on Thursday, February 3rd. Getting treatment is a lot like participating in an endurance event. I roller skated in the NYC skate marathon last year. It was a 5k loop eight times, I remember telling myself “one down, seven to go.” And after my first round of chemo I did the same thing, “one down, five to go.” I should be finished with treatment April 27th and the triathlon is June 12th.
I’m training for the Eagleman 70.3 triathlon during chemo because I can, because I feel good, and because I want to help everyone else with a blood cancer. I’m training for a cure.
(Photos by my good friend and supporter, Chloe Ferber: http://cfphotos.yolasite.com/)
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