This is the first post in a series by Megan Santa Croce, who at the age of 24 is battling cancer for the second time.
Hello everyone. My name is Megan Santa Croce, and in honor of Ovarian Cancer Awareness Month, I wanted to share my story. So, here it is.
And as of late, this is my current status in life: a woman of 22, no ovaries, fallopian tubes, or uterus, and fighting cancer for the second time. Oh, the joys of youth! My first diagnosis was at 15, when they found a sertoli-leydig tumor in my abdomen attached to one ovary. During the removal, they left me with an ovary and my uterus, because without that ovary, I would not have the ability to produce my own hormones or have children. However, kind as this idea was, this past June I had a recurrence, and the remaining ovary was taken out.
In my case, I can say no, it wasn’t traditional ovarian cancer. Traditional ovarian cancer grows inside the ovary, whereas my tumor grew on the outside of the ovary. Many people don’t realize that there are so many types of cancers other than standard ovarian that can affect your ovaries.
Chemo is like ice cream
At 15, my tumor was actually attached to my ovary, yet not labeled “ovarian”. It started at the ovary and grew outwards in my abdomen, much like a tree. It created these “branches” that wrapped around my large intestine, my appendix, as well as touching my other ovary, uterus, and a few lymph nodes. With the recurrence, the tumor was not like a tree. This time, the cancer was growing in over ten different places, all individual to one another. The tumors were found on my ovary, uterus, bones, lymph nodes, even my bladder. But again, can’t say “ovarian”. Yet, here I am, 22, with a tumor that has affected my ovaries and brought menopause upon me much like any other ovarian patient. It’s like you almost fit in something, but not quite. What it boils down to, in my mind, is that I did face what many ovarian cancer patients deal with, just didn’t have the official label.
In both of my cases, 15 and 22, I received chemo treatment. As a child, I received chemo 9am to 5pm five days a week with two weeks off in between. Fun fact: many people don’t know that when someone says they are getting chemo, it’s not just one drug. The word “chemo” is like the word “ice cream”. In the same way that ice cream has different flavors, chemo does too. At 15, I was on Cisplatin and Etoposide. Now currently facing treatment, I am on Taxol and Carboplatin. Each of these chemos have different side effects. For example, cisplatin hits your kidneys harder than others, making you more nauseous, whereas taxol can cause numbing and tingling to the fingers, which can lead to nerve damage. I have been fortunate enough to not have too many side effects, but I am well versed in nausea, fatigue, the tingling of fingers.
Don't eat your favorite food.
Nausea hits everyone at different times. Some feel great for a week, and then it hits. Some it never hits. Others, it’s always present. At 15, my nausea was terrible for the first three or four days directly after chemo. Anything I ate I would have to take a few bites of and throw it up. Only then I could continue and eat the rest of the meal. I learned very quickly that bland foods go down the easiest. I also learned to choose food wisely. You should never eat anything you love while getting treatment, or in your nauseous days. For example, I was in love with macaroni and cheese, and couldn’t eat it for three years after chemo because I ate it while getting treatment. What a rookie mistake!
On top of nausea, remember that with any treatment you will experience fatigue, and you need to be prepared for it. Truly. My normal day before chemo started with jazz band practice at 6:30am and ended with theatre till 11:00pm, with school and sports also added in that time frame. On chemo, I was lucky to read one history chapter in a week. It was hard to accept that I couldn’t do everything. In fact, the first time I cried was when my doctors told me I would not be able to go to school or participate in after school activites.
Be prepared for fatigue
My busy life became a boring one. I couldn’t be up an entire day without a nap. I had trouble taking a jog around the block. Chemo took a lot of my energy away. But it was a necessary step. I started to learn my body and soon find when in my chemo cycle I had the most energy. For me, that was always towards the end of each cycle. When that happened at 15, I would go out and rake leaves, my favorite thing to do! Or, I would go to a small state park and take a mini-hike, because I could. This time around, two days before chemo I went to Thousand Islands with my mom and amazing sister for a boat tour, which was amazing! So with fatigue, I let my body show me the way. I let the fatigue take me when it comes, and enjoy the days it doesn’t.
Nausea and fatigue came with both my treatments, but this current treatment threw me for a curveball. As I said, Taxol can cause tingling in the hands, which can sometimes lead to permanent nerve damage. I have had two cycles of Taxol, and during the first, the tingling was prevented using ice on the hands and feet during treatment. The second time, however, I was in such a haze from my pre-chemo medications that I didn’t even notice they had switched from pre-medications to the Taxol. Needless to say, I have had tingling in my hands and feet for over a week now. Let me tell you, it’s not fun. I feel like my feet are asleep, but they never are! So even if you don’t want to, force yourself to use that ice, because having done it both ways, I think I would prefer having no side effect!
Now all of that sounds very technical, but regardless of what kind of chemo you get, you have to get it. So, what is a day of treatment like? Well, honestly it’s very low key. To start, you always get blood work to make sure you are healthy enough to start chemo. Once that is taken, the process all depends on your treatment.
Chemo is a full-time job
For me, at 15 I had five days straight of chemo, 8-5, and the doctors had me on hydration 24/7 through that entire five day period. Some chemotherapies need hydration because of the toll it plays on a specified organ, like the kidneys in my case. On top of that I would get my anti-nausea pills, which were pre-medications for chemo. Then of course, you receive the chemo, which would last three to four hours, then finish with hydration. After a day of chemo, I would have to bring a hydration bag home with me that was connected to my IV or PICC line in a backpack, so that I was constantly being hydrated. Then, I’d go back in the hospital the next day with my backpack and do it all over again.
This time around I have a whole new set up. Woohoo! I spend about 7 hours in the hospital for each treatment. Blood is taken, and I receive my pre-chemo medications, which are two anti-nausea, Benadryl, and a steroid. Then after, I am given my chemo, which takes about 5 hours of the total time, and I can leave right after, no bags attached.
Your bag of goodies
This is once again, doctors stuff: but I promise you it gets better. As a patient, especially at 15, I did not stay in my room sad during this boring treatment. I brought my bag of goodies, and I had FUN!! Everyone’s “bag of goodies” was different. I would bring my blanket, all my schoolbooks, and coloring books and crayons. When I wasn’t studying or coloring, me and my friends went crazy. We would intentionally tangle our tubes and tick off the nurses. We would pour apple juice in a clean pee bottle and drink it to see how many people fell for it. We would hang out in the teen room, dance with our iv poles, and watch endless episodes of Glee. We also had the world’s longest running Jenga tournament going on, probably having recorded over 50 games by the end!
My last treatment was around Christmas, so we even got lights and decorated our individual treatment cubicles with lights. I even had a little fake tree. Treatment was made fun, and I knew that going into my second, it had to be the same way.
This time around, it’s not as crazy, but I still come very prepared. I bring my blankets, my coloring books, my phone, and always a surprise board game! I have friends and family visit and chat. I watch them lose as I beat them at Bananagrams or Boggle. I take a nap or two, or watch my favorite game show Family Feud! Although there is no dancing, and quite honestly no one else there my age, I still manage to bring the fun to my treatments.
If I have learned anything in regards to treatment through my first and now second time, it’s that you need to be positive when facing your treatment schedule. You need to take your treatment and do something special with it. Tell yourself: “by the end of treatment I will have knitted a scarf”, and do that every chemo treatment. Or, tell yourself you’re going to dress up funky every chemo treatment to make it more fun. I have six treatments, so I dress in a different color every treatment, so that over my six treatments I will have dressed in the rainbow! This helps remind me that things aren’t as dark as they seem. It’s only people’s perspectives that make it that way. So I go into chemo with crazy colorful makeup, determined to kill a new candy crush level and to beat my opponents in my board games while my body beats up disease. Bring it on, cancer!