So my hair and I had a little falling out today because it did not agree with the chemo that was given to me. So we decided to go our separate ways. (get the joke?) But in all seriousness, my hair is falling out rapidly. I might be in a little bit of denial right now, because I really really wanted to color my hair red before it started falling out. Oh well, it’s all about timing. I decided to video myself going through the process of pulling out my hair, which, by the way, does not hurt one bit. It is kind of like brushing your hair, it doesn’t hurt. You always get little strands of dead hair in the hairbrush- it just so happens that mine is like massive chunks of hair as opposed to a few hairs. I did not have a freak out. I thought I was going to have more of a bad time with parting with my hair because I have lost it once before and I grew attached to it when it grew back. But no, losing hair is a small price to pay to live. I feel the need to show people what it is like to have someone lose their hair, because it can be scary to those who do not know what to expect. I now have a few bald spots in my very very thin hair. I was basically told by a relative to shave my head, but that completely defeats my purpose. I shaved my head the first time before my hair even started falling out because I thought it would be gross to have strands of hair coming out. Been there, done that. I have mad the conscious decision to not shave my head. I am documenting what it is like when hair falls out from chemo. There really isn’t a lot out there that new cancer patients can look at about what hair loss is going to be like. I feel the need to educate people about cancer, and this is one of the easy ways to do it. Shocking pictures and videos that really stick in someones mind is perfect for others to get information about what they could possibly go through. Cancer is scary, but if you already have an idea of what will happen, the unknown becomes less scary. You know that there are other people out there who are bald and insecure about it because of social norms. This needs to be stopped!
Ok, this has taken me a few days to write because I have been attempting to upload a video to it with much difficulty. I guess I should update you guys on how I have been doing. So on Friday, I had to go in for a platelet transfusion because mine were at 16. They should be around 100 or so, which means that mine are pretty darn low. I have bruises everywhere and it looks like my family has been beating me- but trust me, it’s just the platelets. The bruises form from getting my nightly Neupogen shot in the arm, and I swear, even from a tiny diabetic needle, it looks like I was hit with a baseball on my arm. My right arm has tons of little bruises, as well as one on the inside of the arm from my CT scan back when I was in the hospital. That IV did not even hurt, so I don’t understand why the bruise is still there after maybe two weeks of healing. I guess that is platelets for you!
I got to talk to my oncologist about what I have been hearing about from various Ewing’s Sarcoma groups, such as clinical trials and stem cell transplants. He told me that there are many open clinical trials in phase 1 for Ewing’s, but that is more of just testing to see side effects of the treatment and it is considered lucky if the treatment does any good. If the trial is in phase 2 or 3, it is more reliable, but I haven’t found one worth my time or my health. Stem cell transplants sound like a really good thing in theory, but there hasn’t exactly been too much success happening in that department. Since Ewing’s sarcoma is so strong and hard to kill, the stem cells that have been harvested tend to expire by the time someone’s tumors are gone. Or something along those lines, I was in Ativan Land, so the details may be a little sketchy, but we will keep that as an option as more studies are done and stem cell research has better success rates. I think it is all really about timing. Right now, we are all stalling my cancer basically until something fantastic comes along. Or, well we were until I got sick, so we are treating it more aggressively now. I trust my oncologists, radiologists, and surgeons with my life (well duh!) and I trust that they are looking into everything that they can, and if I bring something up that they did not know about, they will put time to look into it. That is why I am so happy with Kaiser, because all of the staff for oncology are fantastic! They care about the kids (including me) and they get to know us, they know what we can handle treatment-wise. They know what our goals are other than the most primal need to survive. They shape plans and change plans based on how we react to certain treatments. As long as I am getting better, I guess I don’t mind losing another year of my life to cancer, but at least I am doing something about cancer awareness that I had not even thought about two years ago when I was 18. I guess you could say that I have done a lot of growing up in that short time span, I kind of found my calling in life. I need to use my power of writing to spread childhood cancer awareness. Hey, everyone finds their niche, and I finally found mine.
I did a fair share of walking on Friday, my dad and I went to the hospital so I could get my butter-looking platelet transfusion. I swear, the platelets look exactly like clarified butter so it doesn’t gross me out. Then again, nothing really grosses me out unless it comes to smells and food. So my dad and I walked down to the cafeteria which is in a different building, kind of far from the clinic. I wanted to get my favorite salad there, but I found out the hard way that they are trying to go healthier, so my favorite ranch is no longer there, good croutons are nowhere to be found, and no more crumbled bacon. I need to gain weight wherever I go, so that low fat stuff is just not going to cut it. I was pretty disappointed to say the least. They did have the best ranch dressing… So after we got our food we quickly walked up to the other building, at an incline. I was tired, but I felt accomplished that I could actually walk that far without having to stop for air. So my breathing really is getting better. Don’t get me wrong, I was pooped, but it was a step up from having my mom wheelchair me in the hospital, rather than only wheeling me out after I had my 2mg dose of Ativan and am completely out of it, tired, and happy. I actually went to bed at 6pm on Friday because of the benedryl and ativan that I took, I just get zonked out. It takes away the nausea that I get just from stepping into that part of the hospital. Building C is what I think it is. It just has a certain smell that I perceive as getting chemo, so just the smell alone of the hospital (the in-patient hospital and the main hospital with the cafeteria do not have this smell) gets me feeling sick. I do not understand why that building along has a certain smell to it, I guess they use different cleaning products or flooring or something. I always get a big whiff of it when I first go to the steps up to it, and am blasted by this awful smell when I actually walk in. Crazy!
So on Saturday I woke up feeling uncomfortable because my hair was pretty much gone, I had some long strands that I managed not to pull out before bed, and the hair kind of pulls, I don’t know how to explain it. It just doesn’t feel right. The hair should not be there and it is giving you a warning that you need to shave it soon when it is uncomfortable to sleep on. At around 10am my mom took out her hair trimming kit and started shaving away. I no longer look like a rat or have old people, thin hair! It was really gross at the end… Now all I need to do is go out and tan my head to make it match my face! I need to get some sun anyways because it makes me happier and I plan on keeping my freckles around. My dad came over at about 1pm to hang out with me, and at around 3pm we decided that we should go to The Melting Pot because it was featured on a show that was dedicated to great places to get a lot of cheese. Cheese sounded so good to me at the time, as well as the caramel and chocolate dessert fondue. We got a Wisconsin cheese fondue, it had three cheeses and some white wine. I was so looking forward to the cheese, but the wine just ruined it for me. I was so mad, but I ate some of the meats without it anyways. It’s not anyone’s fault that beer or wine do not settle with me, so I was not going to want another cheese thing. When we got our dessert fondue, my dad and I knew we were going to be in heaven. The caramel, chocolate, and caramelized pecans in the pot was just fantastic. We dipped in strawberries, bananas, cheesecake, marshmallows, brownies, rice crispy treats- you name it, and it was sooo good. That hit my craving right on the spot! We then went home and I went straight for a nap with Panda. I did not sleep very well because the heaters in my room are on and I cannot sleep when I am too hot. When I got up from my slumber, my dad was watching a Grindhouse movie. This one happened to be one I have been dying to see, Planet Terror. It was a gory, funny, zombie movie that I enjoyed so much. I really recommend that you see it if you can handle a lot, and I mean a lot of blood and guts. When that was over my dad went home so my mom and I ended up watching the Miss Universe pageant. It was funny, only one of the top 5 girls actually answered the question they were being asked. The others skirted around the question completely, which was rather annoying. But the girls were gorgeous and most of them had on amazing, sparkly dresses that I loved. I have always dreamed of having a sparkly dress like those, but I do not do pageants so I would not have anywhere to wear it. I personally loved Miss Great Britain’s dress, her whole look was paying homage to Jessica Rabbit. That was pretty neat, so she was a knockout with the dress and the hair, I was sad that she wasn’t in the top 5 because I adored that dress and I would have been happy to look at it some more! It was memorable.
And now, here I am, waiting to upload this because the stupid video is going to take forever to load. I have a hat on because my head gets cold just because of the lack of hair. I need it to be cold to sleep, but my head gets cold. I swear that is the biggest dilemma that I have to deal with being bald. Whether or not to wear a hat, to bring one where I go, and whatever other things.