Well, as many of you know, I have spent quite a long time in and out of hospitals. If you were to add up the days that I have been impatient, it would add up to around 6 months. Six months of my life wasted. Six months of my life where I could have been out and about in the world. Six months of my life where I could be finishing up school. Six months of my life that I could be spending doing collegiate sports. But, alas, they have been spent in the hospital. Generally speaking, when I am in the hospital I am not feeling very hot. I normally have heavy nausea, have tubes attached to me, have to drag an IV pole with me wherever I go, mostly to the bathroom. I would love it if I could just get up from the hospital bed (which is actually comfortable as you can adjust the angles of it) and go to the bathroom. But, nope. I have to climb over the side and unplug my “buddy” and take it with me. Now with normal people, they wake up to use the restroom about one time- but not me! I am on fluids constantly to flush the drugs out of me and to make sure that my kidneys and liver do not get poisoned by the chemo. I end up waking up about every hour or so to go to the bathroom. I feel bad about it so I hold it in as long as I can stand it, because going to the bathroom includes waking up my mom or dad (whomever is staying the night with me) so they can help me in case I am drugged up and not very stable. When you feel so bad in the hospital, being drugged up or “high” or in Ativan Land or taking Benedryl to go to sleep. In my case, I use all of them as my night time meds. Sure, makes me sound like a druggie, and I guess you would be correct. But these all serve me a purpose. When I take pain pills in the hospital, I get itchy. That is where Benedryl comes in to take away the itchiness to a point. Ativan is just to keep me from puking and makes me go to a happy place and sleep.
I guess I will enlighten my followers on what chemotherapy drugs I am taking, along with their side effects:
Carboplatin: It works to destroy cancer cells by interfering with the cancer cells growth cycle. The most common side effects are nausea/vomiting and low blood counts. Some of the more unusual side effects (which I seem to be prone to) are abnormal liver function tests, low levels of potassium, calcium, sodium, and magnesium in the blood; anorexia, kidney damage, hair loss, allergic reaction, hearing loss, and numbness in the fingers and toes. The major warnings about Carboplatin is that it may cause kidney damage and can cause hearing loss.
Etoposide: It works in the same way as Carboplatin. Common side effects are mild nausea/vomiting, loss of appetite, hair loss, and low blood counts. Some of the less common side effects include: mouth sores, low blood pressure, fatigue, abnormal liver function tests, and allergic reaction. Also, with Etoposide, blood pressure and heart rate needs to be constantly monitored to make sure one is not dizzy or could have difficulty in breathing.
Ifosfamide: It works at the same level as the other two drugs. Common side effects include: low blood counts, nausea/vomiting, diarrhea, and hair loss. The less common side effects include: blood in the urine, kidney damage, abnormal liver function tests, confusion, and seizures (although the latter two are rare). Since the medicine has been known to cause bladder irritation, fluid intake and urine output are closely monitored. Along with that, a drug named mesna is given to help to protect the bladder.
So yeah, these are some of the things I will go through, I will probably go through all of the side effects, aside from seizures. However, this is a low price to pay considering that it WILL save my life, or at least prolonggggggg it. Why all the g’s at the end? I’m emphasizing how important prolonging my life is. When the time goes by, more research is being done on childhood cancer, including Ewing’s sarcoma. Personally, I believe they need to look more into genes and chromosomes to prevent the body from allowing tumors to grow. Basically, “In all Ewing Family Tumors, a change occurs in a cell to move a gene called EWS on chromosome No. 22 next to a section of DNA on one of several other chromosomes that causes the EWS gene to turn on. No one knows why this happens. It is not inherited; rather it occurs after the child is born. This change can be tested for in the biopsy specimen used to confirm the diagnosis.” (WebMD).
Yeah, I have done quite an amount of research on my cancer. I always want to know the answers to everything, so I am often found looking them up. I am curious in that way, it does not matter what fact or myth I want to look up, what category they belong in, whether it be stalking a guy who my friend is into to make sure that he is not a psychopath, I will find things out. What I also found out from WebMD is ” It accounts for only 1% of all childhood cancers. Although it can occur at any age, it very rarely occurs in adults over the age of 30.” So I guess if anyone was wondering how rare my cancer is, it is pretty much spelled up above. It is only 1% of childhood cancers, so imagine what it would be if both childhood and adult cancers were included in that study. We would not measure very well. Sure, breast cancer and others have hit more people, but more research has been done on the cancer because of the number of people diagnosed is way above the 250 or so new cases of Ewing’s sarcoma every YEAR. I think that there needs to be a bit more research on my cancer because it generally is more devastating and has a much, much, higher mortality rate. That will never settle with me.
Okay, now to get on with how I have been doing. It has been getting harder to breathe, however I do not need breathing tubes. (Thank goodness!) I do have a lot of pain on my left side, including my shoulder, ribs, almost to the hip, and kind of near the heart I get a pain if I move a certain way. We will come to the bottom of this with a CT Scan on my neck and chest. I am looking forward to having answers. I am also hoping that the chemo really gets going to make my tumors upset. They better, since I will have to be upset when I lose my hair again. I actually have grown attached to it… Oh well, when I go out with friends (like to a party or a bar when I am 21) I will buy cool colored wigs and rock them! Other than that, I will stick with beanies and being bald. That’s how I roll. I am confident even without hair, but it deeply upsets me when people stare at me and give me dirty looks when I walk around bald. I will have a voice this time, and they will feel sorry for staring at me. (Sounds like the start of a serial killer movie, however I am much better with the power of words, and boy have I had a lot of time thinking up my retorts.
I have had a few visitors come to my room. The first people were Katie and Julie Rundle. Their brother/son was my chemo buddy until he passed away. I will always remember his birthday as it falls on the same day as my brother, Mark. That day is October 26th, and I know I will be celebrating both of their birthdays. As Julie put it, we will be celebrating Andrew’s time being with God and being in heaven. It was really good to hear them say these positive things, they made me feel so much better about everything. They also brought me Jamba Juice (two of them!) after they consulted my mom on what flavor I would prefer. They also got me a Jamba Juice gift card to grab some for later. One of my nurses from the clinic, Renee, came to visit me on that day as well during her lunch break. It was so nice seeing her! I feel like it has been forever since I have seen her, since I would only go to the clinic every three weeks for one day, and she would not work on those days. I feel like Renee is another mom to me, I can tell her anything and just feel comfortable around her. It is lovely having nurses, or just people in general who click with you. Renee also visited me today. She brought me a copy of “The Heat” so I could watch it, and man did my mom and I enjoy that movie. Shelly, my caseworker, and Tamara, my nurse practitioner, also visited me today. That was amazing as well, we talk like we are good friends and can joke around about everything. I only surround myself with people who are fun or nice to be around, so they are totally included in that. I believe one of the social workers named Tammy (well that’s the name on my starbucks cup says) went to starbucks and got me a venti iced chai tea latte as well as a glazed donut. I was so happy because I just happened to be craving donuts! My social worker Hillary came by and we talked about getting my SSI as my cancer is considered chronic. I think it is worth it and I know I will qualify. I cannot hold a steady job by any means considering my health can change as much and as randomly as the wind changes direction. I would be working at least in the summer and I might have continued on coaching high school swim later in the season, but nope. My body is a little too unreliable. I find it hard to make plans and keep them. If that makes me a flake, then so be it.
Oh, and I was dating this guy (it wasn’t official or anything) but we spent a lot of time together and I know we were both interested in each other. He was a really nice guy and I felt comfortable around him and was able to show my secret nerdy side (oops, it is out now) and my goofiness. Unfortunately, I was having a bad feeling that something was brewing in me again, such as cancer is growing, so I drew away. After a few days I texted him and said that we could no longer see each other because my tumor is growing and it will leave my life really complicated, and it just wouldn’t be fair to either of us. Maybe if we had been dating for longer I would still date him, but at this point, I did not want anyone to fall hard in with the emotions, especially considering that neither of us are emotional people, we trust each other and are still friends, but it isn’t fair to bring someone who I am newly dating to be swooped up into my journey through cancer. We have always been completely honest with each other, and he is aware of my history. The “breakup” text (since we weren’t official, even though it felt like it) went really well. He totally understood and there are no hard feelings. I mean, there is really nothing anyone of us could do concerning my health problems. What I liked about the kind of “goodbye” text was him stating something along the line as “You are a cool girl and I hope I can meet other cool girls like you. Maybe one day we will run into each other.” And I agreed, saying “Life is funny, it is very possible! The timing was just off.” As it was. But I am glad that I did meet him and ended it well, because I am sure that it boosted up our confidence that there are good people out there who are not clingers or psychos. I will admit that I am gunna miss that kid, so I am sure I will text him from time to time. I am just glad that it was a thing that we both felt good about at the end, because it was not anyone’s fault (aside from my body who hates me). I am glad that I got a bit more dating experience because I have not been known to date many people whatsoever. I guess practice makes perfect for a relationship.
Oh, and I have been sleeping all day long basically, ok, well not all day long, but I slept through the night pretty well for having to go pee every hour or so. I feel not as tired as I have been lately. I have not been doing much other than playing on my phone or watching whatever is on tv, but I love getting the visits from people, they break up the day and make me feel loved and worth their time. *hint hint* Having people visit me also can help with an idea of what I am going through, and I am sure will make others feel much better about their lives and stop and think before causing self harm.
Oh, and I thought I would like to add something here in the end. I have been looking up foundations that are for pediatric cancer cures, and found a few good ones that are actually legit charities, with most of the money going to research, which is such a relief to me.
Above, is a link to St. Judes Research Hospital. They do spend most of their money on the treatment for kids as well as researching looking for better treatments and cures. So I recommend donating here for childhood cancer in general. (They are also doing a clinical trial for Ewing’s sarcoma. So please look into this and donate. =]
http://sarcomahelp.org/team-sarcoma.html
Basically this is a site that focuses on sarcomas, and 95% of the donations go to the research. Another great thing about it- you can specify what sarcoma you want to fund. This made me happy.
So either of these websites could help lead us to new treatments and cures for the deadly disease of cancer. Personally, I would want someone to donate to sarcomahelp, specifically to ewing’s sarcoma. Please, of course, do your research about which sites (even other ones) and choose one that feels right to you. That is all I am asking, oh, and another thing, if we can spread my blog out as far as possible by my readers and followers showing it to others, I would be thrilled. And I think all of my chemo buddies would appreciate it too, because although we might not always look sick, our bodies have a lot of damage done to them. This would help spread awareness and give people a little bit more knowledge about what we go through on a daily basis. Also, I am hoping that the more people who get educated that kids can get cancer (and be bald) that people would stop being as critical about us and the staring would come to a halt.
I am done for tonight, I am currently on hydromorphone(delotted) and ativan, and soon to be benedryl, so I am getting a little loopy, so my writing needs to stop while I can still see straight. Hehe
Love always,
Lauren McCullough (instagram: swimchicklauren) and (twitter: swimchickLM) and if you want to find me on facebook, well I just gave my first and last name. I just want childhood cancer and ewings sarcoma as much press as possible so that it is not unheard of.
So goodnight all =]
The Not-Dying Girl 