Editor’s note: Always, but especially during September, Childhood Cancer Awareness Month, we are grateful for Jessica Meyer and her regular articles that give a voice to childhood cancer.
5 Days of Chemo – Straight Talk
Today is day 1 of my second round of chemo. Most chemotherapy treatments are given in repeating cycles. My cycle is 21 days. I get one dose of the first drug and three doses of another drug that is scheduled within each of my cycles. My alarm goes off and I prepare for another day of being an 11-year-old pediatric warrior. Today I begin another battle round in my war on my brain cancer. I am sporting shorter hair, smaller clothes, and a big smile. I am excited to get to the hospital. I spend a lot of time there these days. It is my second home. I have made new friends at the hospital. My new friends are these awesome doctors, nurses, cancer patients and their families. Believe it or not, they are all kind of fun to be with.
We arrive at the hospital. My parents park their car in the same spot just like each previous visits. They do this each time so they will remember where it is parked many days from now when we leave. My day starts in the oncology clinic with the medical oncologist and oncology nurses. I will also get visits from social workers, child life specialist and maybe even therapists. The specialist told me she got some new games she wants to play with me later. My weight and height is checked as well as my blood pressure.
Because of the location of my brain cancer, I have other secondary issues that will be constantly monitored. One is a rare condition called diabetes insipidus. This is caused by the lack of sufficient vasopressin; a hormone produced by the brain that instructs the kidneys to retain water, which usually means my kidney pass an abnormally large volume of urine. The doctors are very careful to combat this because it causes chronic dehydration, low body temp, accelerated heart rate, weight loss, kidney damage and brain damage. Not ideal for beginning a new round of chemo.
Another secondary issue caused by the location of the brain cancer is that I have adrenal insufficiency. This is another rare endocrine hormonal disorder I have which means my adrenal glands do not produce enough of the hormone cortisol. This hormone is released when your body is under a stress such as a fever, surgery, infection, or other physical stresses. The cortisol hormone helps the body respond to stress, maintain blood pressure, balances the effects of insulin and helps to regulate the metabolism. With the treatment I receive, my body could go into adrenal crisis. The doctors are careful to combat this as well because it can cause dehydration, high fever, low blood pressure, nausea, vomiting, rapid heart rate or even a coma. Again, not ideal for starting another new round of chemo.
Notice how well versed I am in medical terminology! Yes, I rock!
Now it is time to access my port. A port is a small disc made of plastic and metal about the size of a grape that sits just under the skin. It was put there during one of my surgeries. Mine looked like a small purple heart. So cool! A soft thin tube called a catheter connects the port to a large vein. My chemotherapy medicines are given through a special needle that fits right into the port. I can also have my blood drawn through the port. I had grown to really appreciate my port. With the help of numbing cream and freez-ee spray, I barely would feel the needle going through my skin when the nurse would “access” my port. Because of my super awesome port, I can avoid the many needle pricks that one encounters when they are in a hospital, especially since my veins run and hide at the sight of a needle. Of course, a successful port access was done, which means I got to press the famous red round easy button that says to the world “that was easy”! Only, this was just the beginning and the rest won’t be easy. I still had a very difficult uphill battle to climb.
Time for fluids. While waiting for my blood counts and reports, I would be given lots of fluids through my IV. This would take a while, which was awesome, because now it is time to socialize and have some fun. I meet up with the child life specialist and we play a game against my parents. If I remember correctly, I won the game – lol. Now, I make my rounds and go visit and talk with nurses, doctors, and my hospital friends. My IV pole would follow me around like a shadow. Walking around being attached to a port catheter which is attached to IV fluids which hangs on a pole isn’t the easiest type of walking to do. But hey, I am going to be lying in a bed for several days, it is time for me to strut my stuff.
The morning has passed and now it is the afternoon. Time for me to be admitted to the hospital. You see, my chemotherapy and its effects on me means I cannot do chemo in the clinic. I will be admitted to an inpatient room. This time I was extra excited about my room. It was the corner room on the sixth floor. Woohoo! Because it was the corner room, the room is a little bigger with a killer layout. The room had this awesome view where the hospital helicopters would come in to land. I could see for miles and miles outside my window and watch how life is still moving forward outside for so many others.
We unpack a few things from my suitcase and a bag full of feel good items. We make ourselves comfortable as best as we can. I find out that one of my favorite nurses will be on staff at night for my entire days of chemo while I am in the hospital. I have prepared myself with a new set of jokes that he and I share. You see, we have a blast being silly with corny kid jokes. Plus, we can both quote lines from the movie Sandlot. In fact, he calls me Smalls. I call him Talls. The doctors come in and visit. I get a high five from them and we talk for a bit. They tell me what to expect and what time we will start the treatment. Since this is round two of chemo, my hair has started to fall out. It is getting everywhere. My hair is on the pillow, the sink, the floor and in my bed. I made the decision to get the rest of my hair shaved off. My once beautiful long hair will be gone. I am ok with that. I know many others thought it would be hard for me to lose my hair, but believe it or not, it wasn’t that big of a deal. We stepped into the hospital bathroom, my dad is on the left and my mom is on the right side of me. My mom who once would comb and braid my hair when I was little now had this humbling honor of shaving off what was left of my chemo hair. We blasted music, jammed to the tunes, and buzzed my hair away. I am now sporting the Joan of Arc look. I kind of like it. I look like a young warrior, just like Joan of Arc.
Today, like every day of my cancer treatment, I pray to God to defend me in my battles. I choose faith. Faith in God, faith in my doctors, faith in my medicine, faith in my family, and faith in myself for what I am next going to encounter. I pray. That is my thing. It is now time for the treatment to begin. My chemotherapy cycles consist of two different drugs. Two very potent drugs. It is now 9pm and we start with a drug called Carboplatin. At 10pm the drug Etoposide will begin. As the night continues, I am starting to not feel good at all. It is the middle of the night, when most are sleeping, I am not, neither is my mom. You see by now, I am throwing up. I am throwing up a lot. I am throwing up often. I am throwing up so quickly that we keep a special bucket within grabbing distance of me because we all know too well that I won’t make it to the bathroom. It almost seems like clockwork how often I am getting sick. This goes on all night and into the morning. It is now around 5am the next morning and the medical interns come in to make their rounds before the doctors get there. They are young and sweet. They ask how I am doing. I almost throw up on the young intern’s shoes. Oops. I think that answers that question. The doctors come in and give me a different medication to help with the nausea. I give it a try, but ultimately nothing helps. The morning passes and turns into afternoon. I don’t really sleep, I can’t eat, I can’t drink. It is almost dinner time. Dinner time doesn’t mean food, it means the next dose of my chemotherapy. Hold on tight! I get a quick shower in before the next dose to freshen me up. With my mom’s help, I could clean up super-fast. It feels so good to get a shower and put on clean PJs. My favorite nurse visits me and tells me a few jokes. We swap a few laughs for a bit as he checks my vitals and stuff. My dad, mom and I watch some TV. I am still getting sick all the time and I am exhausted. A volunteer came by today with a cart full of crafts and special toiletries. I picked out this beautiful pillowcase that has very cheerful designs. It goes well with the special prayer blanket a loved one gave me. I have learned to make your hospital room crazy cool, comfy and as cozy as possible. My room is now colorful and personalized with my own stuff, including a large supply of stuffed animals.
Day 3 continues the same as the previous days. The early afternoon enters and I am administered my next dose of chemotherapy. I think about how I am getting this drug and how it enters my body. It can destroy the good and the bad inside me. I am still having lots of nausea, vomiting and very little sleep. I feel a little bit of brain fog and fatigue but I am also kind of bored. I am restricted to my hospital room, so my goal for today is to try knitting. I knit a scarf. Not too bad for my first try.
Day 4 is here. Which means no more chemo! The chemo is still running through my veins, but at least no more additional chemo. My adrenal insuffiency and my diabetes insipidus is off the charts. I recite my status report to my doctor as if I am a well versed as the young medical interns. I have become skilled in medical terminology that pertains to my Germinoma brain cancer. I can even help with blood draws and know the steps of several procedures. I probably can give training classes on how to use your gastronomy tube and Joey pump. Since today I am not receiving chemo, I thought I might try to eat something. Besides it is Thanksgiving. On second thought, let me try to drink something. Downstairs in the cafeteria is a Taco Bell. I would love something cool and refreshing on my throat. My throat feels very raw. I am thinking Baja Blast Freeze. My family brought me one up to my room. The first few sips felt soooo good. But that didn’t last long because it came right back up.
Day 5. There is talk this morning that I get to leave to go home today! We pre-pack and get ready, just in case. I was so happy to take a walk today but I am not allowed to leave the 6th floor of the hospital. I cruise around the nurses’ station and talk with them for a bit. I say hi to a few of the patients. We are not allowed to enter into each other’s room because of our immune system. But we can still talk to each other if I stand on the other side of the doorway. I make my rounds and I came upon a scale. I weigh myself. I am now 46 pounds which is very underweight for an 11-year-old. I can admit to it now, but we had to buy size 4T bottoms for me because my clothes kept falling off. A 4T is a toddler size. Yeah, I got that skinny.
It is the late afternoon and I am discharged from the hospital. We drive home. I throw up on the drive. At least only once. I arrive at home and I am so happy to be there. My dogs greet me like it has been forever. The home health nurse meets us at the house. It is Neulasta shot time. Yikes! The Neulasta shot to me feels like an icepick going in my arm. This shot is very painful even with numbing cream and freeze-ee spray. I know this is something I must do because this is used to help the growth of healthy white blood cells in the bone marrow. This needs to be given to me with 24-48 hours after my last dose of chemo. I really need this to help protect me against the risk of infections especially since my immune system is almost nonexistent. After the icepick needle, I walk over to the couch in the living room. It was a short walk, but my heart is racing. I need to sit for a while. I don’t feel right. I am very tired. I am hoping to fall asleep for a little bit with a very comfortable blanket and my dogs snuggling with me. The smell of any foods makes me very sick. So, we decide to wait till Sunday to celebrate Thanksgiving. Come to find out, in a few days, the only food I could tolerate was popcorn. We had a popcorn Thanksgiving and it was the best! And we played poker. We played Texas Hold’em with my parents, my aunt, and my grandparents. That was so much fun as well. I won again! LOL! A few days later I end up in the emergency room because I collapsed at home. Very scary. But I will save that story for another time.
Next week and the week after that are follow up appointments which will probably include several blood transfusions. Then after 21 days from the start of this chemo cycle, another 21-day cycle will begin.
This article is my way of giving straight talk about a small snapshot of what it was like to experience only 5 of my days going through chemo. It is not a fancy talk, it is just realistic. And this is what it is like for so many other kids like me. I am one of the lucky ones. I survived. I cannot say enough about how grateful I am to have such a great hospital, with incredible doctors and amazing nurses. Plus, my cancer fighting treatments that saved me was a miracle.
Now what we need to do as a community, especially because September is Childhood Cancer Awareness Month, is to support these children and their families during their cancer battles. For our Big Goal is to help find a cure to end pediatric cancer once and for all. To quote Fight like a Girl, “support the fighters, admire the survivors, honor the taken, and never, ever give up hope.”
Lots of love from your grateful pediatric brain cancer survivor!