How do you choose what to do next when you know that all options will lead to pain, in some shape or form?
I went to CHOP today. Since being let go from the Millenium Phase II study, I've been off all medicine and treatment, waiting for my doctors to confer and come up with some new plans. In the meantime, I had a nice Christmas and enjoyed the temporary freedom - for "temporary" is what it is, and I've known that all along. It's amazing how quickly I can get used to not taking medicine, though.
So, now that the holidays are over, it's time to think about What Comes Next. What Comes Next is something that I'm not sure about yet. It is something that will be new and that will come with its own good points and bad points, and it is something that is a little bit scary for the sheer fact that it is unknown. I have multiple options, which is something I wasn't really expecting. The last time we talked with my doctors about new treatments, there were really only two: I could get on the trial and get medicine or I would have no medicine. The fact that there are multiple options is something to be glad about, but it also makes me nervous, because it means I now have to make a choice. The problem is that there are no GOOD options. Everything comes with some major drawbacks, so the task becomes choosing the lesser evil which is actually a greater good in disguise.
The options:
1) There are IV chemos I can go back and try again.
Pros: IV chemos help many people.
Cons: Almost too many to list, but I'll try: IV chemos have never helped me in any discernible way. They would drop my blood counts. I'd probably need lots of transfusions. I'd be very susceptible to illnesses of any kind. I'd be at great risk for infections, which would most likely land me in the ICU. I'd become nauseous. I would lose weight. It's IV, meaning I'd either have to stay overnight for up to a week at a time, or I'd have to come in every day and get an IV every day, or I'd have to come in every day and get a PIC line.
Option one is out.
2) There is a new drug being worked on by my doctor that has shown a lot of promise. In effect, it switches off cancer cells, especially ones that have a special marker. This is a very loose definition of this drug, but that's the gist of it.
Pros: It's very promising, especially with neuroblastoma. It has very mild side effects - no blood count drops, no chance of infections, no transfusions, no nausea.
Cons: They need to see if I have this special marker, but the only way to do this is by actually having a piece of the cancerous cells in my body. The way to get a piece of those cells is through a biopsy. There's no reason yet to put me through a dangerous biopsy yet. They might still have cells they can use from previous biopsies I have had, but at the moment they don't know where. Scary thought, yes? The main problem there is that they are looking at CHOP, but my largest biopsy was done at Sloan-Kettering, and they don't have such easy access there. But, my doctors are now looking.
Option two is out until further notice.
3) We continue with the Millenium drug. I know what you're thinking: what??? Didn't I just say I was off the study? This is what I was thinking too when Dr. M. told me that this was an option. But, she explained, there are ways around the study. First, they had to approach the company making the drug, and make sure that they would be willing to sell the drug without it being a part of a study. Many drug companies won't allow this. This has more to do with business and politics than anything else, which is one of the reasons I've always hated business and politics. I'm not going into it here. But, this company was willing to do it. The next step would be to approach the FDA and get it cleared there. There are many, many steps in that one step, but my doctors would take care of all of this. Another reason why we love them. Then, finally, I would continue the same medicine, but without being part of any kind of study. I would get a lower dosage so that I hopefully won't have such strong side effects as I did while I was on the study (haziness, mouth sores, blood count drops).
Pros: This seems like a good chemo. It's easy to take orally. If all goes according to plan, I shouldn't experience many side effects, and any side effects I do experience should be light and pass quickly.
Cons: When does anything ever happen according to plan?
Still, option three is a distinct possibility. If this chemo does not make it past the study phases, the company could choose to stop making it, and so this may be my only chance to get this medicine. There is no evidence that they will choose to stop making it yet, but because it is a possibility, it seems like a good idea to try an easy-ish chemo while it's available.
4) Do nothing.
Pros: Doing nothing...
Cons: ...except worrying.
Of course, this is always a possibility, but it is especially a possibility here because my cancer is so small now, and the MIBG continues to work inside of me. However, there's no telling how long it will still keep my cancer quiet, and in the past, whenever my cancer has stayed hidden for a while, it has always come back with a vengeance. There's a lot less cancer inside me than there's been in a very long time, but it's still there, and everyone knows that cancer can spread like wildfire.
As much as I'd like to say number 4 is a good option, it really isn't.
It looks like Option 3 is the dubious winner. Or is that me?
Wednesday, December 30, 2009
Tuesday, December 29, 2009
A Story of Friendship
(just a warning: this story became much longer than i expected and probably only makes full sense to the people who are mentioned in it. but it explains my best group of friends and how we came to be that way, and so it means a lot to me. it feels like something i needed to write, and it's probably something that no one needs to read. but of course, it's here if you want to and have a lot of time on your hands! i started out writing this entry with a completely different objective in mind, and instead this is what happened. funny how my writing takes over sometimes.)
It's been a while.
Life has continued to go on, and I can't decide if it's going fast or slow. Fast on the good days, slow on the bad, and that's life. Thankfully, there's been more fast ones than slow ones, I think. With the holiday break, I've had time to see friends home from college and extended family on Christmas. These times are always the highlights of my entire life! I always say that I consider my family members to be friends, and my friends to be parts of the family. I'm so thankful to have them, and I couldn't love them more. It sounds cheesy, but it's true! They have been there through everything, and know that what I need most from them is just for them to be there, and to treat me just as they would anyone else, but to listen when I ask for help. That's a great thing about them too; I feel so comfortable asking them for help when I need it, so that it never seems like pity. It's just friendship.
So it's been tremendous to have my friends home, and already I've seen them multiple times. Mostly we normally just hang out at my house, watching movies, eating, and chatting. We can do this for hours on end. My parents always make fun of us because we're such unusual teenagers, and always have been: we used to spend nights crocheting after one friend taught us how and we decided to make blankets for each other; we went to see the new Disney Princess movie even though we're 19 and 20 years old; we would rather spend an evening together, at one of our houses, than just about anywhere else. We just get each other. Completely. I have never felt so comfortable just being me before I met them. We became such good friends over our high school's Senior Trip to Disneyworld, and it happened so serendipitously that I know that it was meant to be. I would say that it mostly started when I walked into my Photography class on the first day of Senior year and found Zandra sitting there too. We barely knew each other, but it was a small class, and we were relieved to see a face we somewhat knew, and from that day forward we worked together on projects and helped each other out. Sometimes we talked about the upcoming Senior trip because it was a much-anticipated high school tradition, but we never talked about spending it together. We both had other friends. My friend Kristen and I often talked about rooming together during that trip, because Kristen was one of my best friends at the time. I had known her since around 3rd grade, but we were never really close until I was diagnosed with cancer. Seemingly out of nowhere, she started sending me small notes, just to let me know she and her family were thinking about me. It was one of the sweetest things anyone has ever done for me. She barely knew me, yet she took the time to let me know that she was there for me anyway. When I was able to start school again, we had lockers next to each other because our last names both start with "Be-", and we quickly became good friends. So it seemed natural that we would room together, and we'd eventually find two other people, since the room would hold 4. But we had plenty of time to figure that out. Meanwhile, I spent lunch periods with another best friend, Meghan, whom I had known since 6th grade. We've had lunch periods together since 10th grade, and multiple classes together. In previous years we'd also had lunch with Michelle, who was one of Meghan's best friends since middle school. The three of us all got along really well, although we didn't often see each other outside of school. Another friend of mine that year was Jackie, who I had met the previous year during a trip to the school nurse! Then in 12th grade we were in the same art and English classes - two of my favorites. We were friends during these periods, but then didn't see each other much, and it seemed like she had different friends than I did.
Near the middle of the school year, we received forms to fill out for Senior Trip roommate requests. Kristen came up to me, worriedly, and told me that some of her other friends were looking for a 4th roommate and were really hoping she could fill that position. But that would leave me without any roommate prospects. I was upset, but what could I do? I didn't want to make her say no, because then it might make the situation awkward during the trip. But then who would I room with? Meghan's and Michelle's room was full. I asked a few people but most people had been figuring this out well before the forms showed up and already had their rooms filled. Then I walked into Photography class and explained the situation to Zandra, who at that point I considered to be another good friend but one I only saw during that class period. She said that she only had a room with one other person, Claudia - a girl I had last had a class with in 3rd grade but who I remembered to be very nice. I wasn't sure if it would be a good idea to room with them, when I hadn't talked to Claudia in a long time, and only knew Zandra through Photography! Plus there was a 4th spot left to be filled, and it would probably be filled with another person I didn't know well! But at that point I would prefer to room with someone I at least knew a little than someone I didn't know at all, and besides, it wasn't like I'd have to spend the whole time with them if it didn't work out. I just had to share a room with them for a week. So they very kindly let me room with them and then added another girl named Carolyn to the room. Carolyn I knew from 6th and 7th grade, and we were actually good friends in 7th grade, so I was happy with that. I hadn't seen her since 7th grade, but that was really only because I didn't attend school in 8th or 9th grade while I was receiving chemotherapy treatments.
We got that settled, and I realized that Zandra, Claudia, and Jackie all shared a lunch table during the same lunch period I had with Meghan. I began spending some of my lunch period talking with them, and quickly felt assured that this would work out; Claudia was just as friendly and kind as I remembered, and Zandra and I were able to relate outside of Photography class! I also began meeting some of their friends, and I felt comfortable with all of them.
Finally the day of the trip arrived, and I was very excited. I felt good about my room and had lots of friends to spend the week with. Our plane tickets and buses were arranged by rooms, so I was on the same plane and buses as my roommates. When we arrived, we learned that Jackie's room is right next door to ours! With a 12th grade class of more than 400 students, this was quite a coincidence!
The first night goes fine, but we're all so tired from the plane ride that we barely had time to remove our shoes before we fell asleep on the beds. The next morning, we all ate breakfast together, but then they all took off for Epcot. I waited for Kristen, and we headed to Epcot separately. We did run into my roommates and Jackie and Meghan there, though, and joined the group. From that moment on, there was a very large group that had all of us in it, and we all traveled together. It's hard to explain why this trip was such a success, or why we all had such a good time, or why we even all got along so well the entire time. The only explanation I can think of is that it's Disney; it's magical. But from that point on, we were all great friends. We realized how well we worked together, and how much we enjoyed each other's company. There are too many individual stories to tell right now about that week, but it's enough to know that every single minute of every day, we were having a good time. I don't think it would be much of an exaggeration to say that that was the best week of our lives. Even when things didn't go the way we wanted to, we would still laugh and go along with it. I try to remember this every time something happens now that isn't the way I hope it would be.
When this trip ended, it was clear to all of us that we had a great friendship, and we spent the rest of the year cultivating it. Unfortunately I had to spend the last month or two of high school back at home when I had a sudden relapse, but whenever I could, I would go in to get homework assignments and then stop in during lunch to see my friends. We spent the entirety of that summer together. My only wish is that we had become friends much sooner, so that we would have had more summers together before leaving for college. Now it is only 2 summers later, but it feels like I've known them all since we were children. I can't explain it completely, but I know that they will always be a part of my life and that I wouldn't fight as hard against this cancer without them.
It's been a while.
Life has continued to go on, and I can't decide if it's going fast or slow. Fast on the good days, slow on the bad, and that's life. Thankfully, there's been more fast ones than slow ones, I think. With the holiday break, I've had time to see friends home from college and extended family on Christmas. These times are always the highlights of my entire life! I always say that I consider my family members to be friends, and my friends to be parts of the family. I'm so thankful to have them, and I couldn't love them more. It sounds cheesy, but it's true! They have been there through everything, and know that what I need most from them is just for them to be there, and to treat me just as they would anyone else, but to listen when I ask for help. That's a great thing about them too; I feel so comfortable asking them for help when I need it, so that it never seems like pity. It's just friendship.
So it's been tremendous to have my friends home, and already I've seen them multiple times. Mostly we normally just hang out at my house, watching movies, eating, and chatting. We can do this for hours on end. My parents always make fun of us because we're such unusual teenagers, and always have been: we used to spend nights crocheting after one friend taught us how and we decided to make blankets for each other; we went to see the new Disney Princess movie even though we're 19 and 20 years old; we would rather spend an evening together, at one of our houses, than just about anywhere else. We just get each other. Completely. I have never felt so comfortable just being me before I met them. We became such good friends over our high school's Senior Trip to Disneyworld, and it happened so serendipitously that I know that it was meant to be. I would say that it mostly started when I walked into my Photography class on the first day of Senior year and found Zandra sitting there too. We barely knew each other, but it was a small class, and we were relieved to see a face we somewhat knew, and from that day forward we worked together on projects and helped each other out. Sometimes we talked about the upcoming Senior trip because it was a much-anticipated high school tradition, but we never talked about spending it together. We both had other friends. My friend Kristen and I often talked about rooming together during that trip, because Kristen was one of my best friends at the time. I had known her since around 3rd grade, but we were never really close until I was diagnosed with cancer. Seemingly out of nowhere, she started sending me small notes, just to let me know she and her family were thinking about me. It was one of the sweetest things anyone has ever done for me. She barely knew me, yet she took the time to let me know that she was there for me anyway. When I was able to start school again, we had lockers next to each other because our last names both start with "Be-", and we quickly became good friends. So it seemed natural that we would room together, and we'd eventually find two other people, since the room would hold 4. But we had plenty of time to figure that out. Meanwhile, I spent lunch periods with another best friend, Meghan, whom I had known since 6th grade. We've had lunch periods together since 10th grade, and multiple classes together. In previous years we'd also had lunch with Michelle, who was one of Meghan's best friends since middle school. The three of us all got along really well, although we didn't often see each other outside of school. Another friend of mine that year was Jackie, who I had met the previous year during a trip to the school nurse! Then in 12th grade we were in the same art and English classes - two of my favorites. We were friends during these periods, but then didn't see each other much, and it seemed like she had different friends than I did.
Near the middle of the school year, we received forms to fill out for Senior Trip roommate requests. Kristen came up to me, worriedly, and told me that some of her other friends were looking for a 4th roommate and were really hoping she could fill that position. But that would leave me without any roommate prospects. I was upset, but what could I do? I didn't want to make her say no, because then it might make the situation awkward during the trip. But then who would I room with? Meghan's and Michelle's room was full. I asked a few people but most people had been figuring this out well before the forms showed up and already had their rooms filled. Then I walked into Photography class and explained the situation to Zandra, who at that point I considered to be another good friend but one I only saw during that class period. She said that she only had a room with one other person, Claudia - a girl I had last had a class with in 3rd grade but who I remembered to be very nice. I wasn't sure if it would be a good idea to room with them, when I hadn't talked to Claudia in a long time, and only knew Zandra through Photography! Plus there was a 4th spot left to be filled, and it would probably be filled with another person I didn't know well! But at that point I would prefer to room with someone I at least knew a little than someone I didn't know at all, and besides, it wasn't like I'd have to spend the whole time with them if it didn't work out. I just had to share a room with them for a week. So they very kindly let me room with them and then added another girl named Carolyn to the room. Carolyn I knew from 6th and 7th grade, and we were actually good friends in 7th grade, so I was happy with that. I hadn't seen her since 7th grade, but that was really only because I didn't attend school in 8th or 9th grade while I was receiving chemotherapy treatments.
We got that settled, and I realized that Zandra, Claudia, and Jackie all shared a lunch table during the same lunch period I had with Meghan. I began spending some of my lunch period talking with them, and quickly felt assured that this would work out; Claudia was just as friendly and kind as I remembered, and Zandra and I were able to relate outside of Photography class! I also began meeting some of their friends, and I felt comfortable with all of them.
Finally the day of the trip arrived, and I was very excited. I felt good about my room and had lots of friends to spend the week with. Our plane tickets and buses were arranged by rooms, so I was on the same plane and buses as my roommates. When we arrived, we learned that Jackie's room is right next door to ours! With a 12th grade class of more than 400 students, this was quite a coincidence!
The first night goes fine, but we're all so tired from the plane ride that we barely had time to remove our shoes before we fell asleep on the beds. The next morning, we all ate breakfast together, but then they all took off for Epcot. I waited for Kristen, and we headed to Epcot separately. We did run into my roommates and Jackie and Meghan there, though, and joined the group. From that moment on, there was a very large group that had all of us in it, and we all traveled together. It's hard to explain why this trip was such a success, or why we all had such a good time, or why we even all got along so well the entire time. The only explanation I can think of is that it's Disney; it's magical. But from that point on, we were all great friends. We realized how well we worked together, and how much we enjoyed each other's company. There are too many individual stories to tell right now about that week, but it's enough to know that every single minute of every day, we were having a good time. I don't think it would be much of an exaggeration to say that that was the best week of our lives. Even when things didn't go the way we wanted to, we would still laugh and go along with it. I try to remember this every time something happens now that isn't the way I hope it would be.
When this trip ended, it was clear to all of us that we had a great friendship, and we spent the rest of the year cultivating it. Unfortunately I had to spend the last month or two of high school back at home when I had a sudden relapse, but whenever I could, I would go in to get homework assignments and then stop in during lunch to see my friends. We spent the entirety of that summer together. My only wish is that we had become friends much sooner, so that we would have had more summers together before leaving for college. Now it is only 2 summers later, but it feels like I've known them all since we were children. I can't explain it completely, but I know that they will always be a part of my life and that I wouldn't fight as hard against this cancer without them.
Wednesday, December 16, 2009
Well, now it's official. It's been too long since I last took that dose of chemo, so I am officially off the trial as of yesterday, meaning I won't be getting another round. That's okay; I was probably messing with the trial results too much anyway! I always feel bad when I'm on a trial study because I know I'm always going to be the one person who makes the treatment only 99% effective because I am always that 1% that reacts completely differently!
But now I'm not sure what happens. I talked with my doctors yesterday and they agreed that I can have Christmas break without any kind of new treatment negotiations. It's good to have at least a little while completely free from any kind of medicine. We'll resume talk about where to go from here after the holidays.
For now, I'm going to finish up my schoolwork and just enjoy the freedom that comes from not worrying about my health. It's funny, I always know that I have cancer but I can still consider myself "not sick" at times. I never say I'm healthy, but there are times when I feel sick and times when I don't. Being on this chemo, I've felt sick. Knowing that I don't have to take it anymore makes me feel a lot less sick.
So now I have my classes to finish and then tomorrow through Friday I'll be in the city visiting one of my best friends at NYU. Perhaps I shouldn't be going when I have so much work to do, but I've been looking forward to this for a long time. I haven't had fun in a while. Thanksgiving and Halloween were the last two times I can remember really having fun. Between those times I've been feeling sick. I really feel like I need this.
But now I'm not sure what happens. I talked with my doctors yesterday and they agreed that I can have Christmas break without any kind of new treatment negotiations. It's good to have at least a little while completely free from any kind of medicine. We'll resume talk about where to go from here after the holidays.
For now, I'm going to finish up my schoolwork and just enjoy the freedom that comes from not worrying about my health. It's funny, I always know that I have cancer but I can still consider myself "not sick" at times. I never say I'm healthy, but there are times when I feel sick and times when I don't. Being on this chemo, I've felt sick. Knowing that I don't have to take it anymore makes me feel a lot less sick.
So now I have my classes to finish and then tomorrow through Friday I'll be in the city visiting one of my best friends at NYU. Perhaps I shouldn't be going when I have so much work to do, but I've been looking forward to this for a long time. I haven't had fun in a while. Thanksgiving and Halloween were the last two times I can remember really having fun. Between those times I've been feeling sick. I really feel like I need this.
Sunday, December 13, 2009
Week 12 out of 12
It is the last week of my online classes for this semester, and once again I'm amazed at how much can change in a few short months. At the beginning of this semester, I was feeling well and I was very excited for classes to start. Now, at the end of the semester, unfortunately I've hit another rough patch in my ordeal with cancer and I'm looking forward to the break from classes. At least I'm on a very slow upswing, finally, since taking the new chemo. My blood counts are finally returning and I haven't had to get a transfusion for a whole week. (Funny how that becomes normal...) I still have next to no energy, but with the end of the semester, I'm looking forward to lots of time to rest. Where do I go from here? Good question. Ask me another. Maybe I'll know the answer to that one. I certainly don't know the answer to this question. I'll just have to wait and see. I might continue with this chemo at a much smaller dose, or I might start an entirely different one. Or, maybe, I might take a break from chemo for a while. We'll see what happens when we get there. For now, we're here, and I have to deal with things that are here.
Which includes finishing my classes and making sure I get all my work in. This is easier said than done. With my lack of energy and focus, not to mention all those times I was in the hospital, under a medicine-induced haze, or just plain sick, I fell behind in my classes. Now I am completely caught up in 2 classes, one and a half assignments away from being completely caught up in my 3rd class, but pretty far behind in my last one. It required a lot of writing, and I just didn't have the energy to keep up. I did all the reading, but the writing was more than my foggy mind could handle. So, now I'm working as hard as I can to finish everything that I can. At the beginning of the semester, I was hoping for all A's, and I started out meeting that goal. But now I'm just hoping I pass that last class. This is something that cancer has taught me: Work hard, but you don't have to aim for perfection. You should only aim for the best that you can do.
Here is my best work. Everything I have in this blog represents me doing my absolute best. Even after this blogging class is over, I'll continue this blog and continue doing my best.
Which includes finishing my classes and making sure I get all my work in. This is easier said than done. With my lack of energy and focus, not to mention all those times I was in the hospital, under a medicine-induced haze, or just plain sick, I fell behind in my classes. Now I am completely caught up in 2 classes, one and a half assignments away from being completely caught up in my 3rd class, but pretty far behind in my last one. It required a lot of writing, and I just didn't have the energy to keep up. I did all the reading, but the writing was more than my foggy mind could handle. So, now I'm working as hard as I can to finish everything that I can. At the beginning of the semester, I was hoping for all A's, and I started out meeting that goal. But now I'm just hoping I pass that last class. This is something that cancer has taught me: Work hard, but you don't have to aim for perfection. You should only aim for the best that you can do.
Here is my best work. Everything I have in this blog represents me doing my absolute best. Even after this blogging class is over, I'll continue this blog and continue doing my best.
Saturday, December 5, 2009
What a weird past month this has turned out to be.
I knew that I was going to start a new chemo. I knew that this new chemo would be an oral medication. I knew that it would be a Phase 2 trial, and I knew that so far the medicine has been pretty well tolerated in patients. I knew that I am not most patients, but I knew that I still stood a good chance of not having any complications from this medicine.
I know nothing.
I started the chemo, I took it orally, and at first I was okay. Sure, the "euphoria" side effect was there - not so much "euphoria" as just a general feeling of being completely out of it. But that was supposed to go away. In fact, it was only supposed to last for a few hours after I took the medicine. It might happen every time I took the medicine, at least for the first week, but that's still only a couple of hours a week. I could handle that.
A few hours turned into a few days. A few days turned into the entire week. Finally the week was over and I no longer had to take the pills. I would have at least 2 weeks free. But immediately after my head cleared, I developed mouth sores. Soon I was in so much pain I couldn't open my mouth, let alone eat or even drink anything. I went an entire day without getting anything into my mouth. The next day I choked down some soup while crying. The next day I got Percocet, which sent me right back into a drug-induced fog.
Eventually the sores all cleared up. Just in time for my blood counts to drop. I then spent the next week almost entirely in the hospital, getting platelet and blood transfusions. I needed more platelet transfusions than blood transfusions, which is a shame because I'm "allergic" to platelets. Years ago, during one of my very first platelet transfusions, I had an allergic reaction while receiving the yellow liquid. My face turned bright red and it burned and itched like crazy. The nurses informed me that this is not an uncommon reaction; it was called, fittingly, "Red Man's Syndrome". The nurses very quickly administered Benadryl via IV and the heat and itch were quelled. But, so was I; Benadryl puts me to sleep faster than any other medicine I've ever taken except general anesthesia. Morphine and codeine just can't compete with IV Benadryl - it's like a thousand pounds of pressure are pushing down on my eyelids and I can do nothing but let them drop. I can feel it enter my veins and then travel through my body. It's insane. Each part of me grows heavy and weak as the medicine runs through; from my hand through my arm down my torso running through my legs to my toes and then it goes back up to my neck to my head and then I droop. I am absolutely helpless.
Every time I am about to receive platelets now, I first receive my pre-medication of Tylenol and Benadryl as a precaution against Red Man's Syndrome. Every time I am about to receive platelets I make myself comfortable because I know that I'll be asleep for the entire transfusion.
What's sad is the platelet transfusions are extremely short. They only take 15-30 minutes to transfuse. It only takes 30 seconds for Benadryl to knock me out. I will be knocked out for the entire rest of the day. A half-hour transfusion means I am doomed to sleep for the entire day.
Blood transfusions are different. I'm not allergic to them. I don't need pre-meds. But, they're much longer than platelet transfusions. They can take 2 hours to transfuse, and it takes at least another hour beforehand for the lab to screen the blood and make sure it matches. Usually we'll be there in the hospital for at least 4 hours for a blood transfusion. They wipe me out in another way; it's just an exhausting process. I'm an impossible stick for IVs, so I have to wait for the IV team to come. There's one IV team for the entire children's hospital, so sometimes it can take a long time for them to come. Then even they can't always get the IV in me with one stick. My arms are always black and blue. Then I just wait for the blood to be ready and wait for it to transfuse. Afterwards, I'll go home and sleep.
If I had known how much this chemo was going to take out of me, I don't know if I would have signed up for more college classes, or maybe I just would have signed up for one or two, not four. It's hard to make up so much work at once, and I'm still struggling. I like the classes though, and I especially like having something to do when I am feeling well, but in the meantime I just have to do what I can.
I knew that I was going to start a new chemo. I knew that this new chemo would be an oral medication. I knew that it would be a Phase 2 trial, and I knew that so far the medicine has been pretty well tolerated in patients. I knew that I am not most patients, but I knew that I still stood a good chance of not having any complications from this medicine.
I know nothing.
I started the chemo, I took it orally, and at first I was okay. Sure, the "euphoria" side effect was there - not so much "euphoria" as just a general feeling of being completely out of it. But that was supposed to go away. In fact, it was only supposed to last for a few hours after I took the medicine. It might happen every time I took the medicine, at least for the first week, but that's still only a couple of hours a week. I could handle that.
A few hours turned into a few days. A few days turned into the entire week. Finally the week was over and I no longer had to take the pills. I would have at least 2 weeks free. But immediately after my head cleared, I developed mouth sores. Soon I was in so much pain I couldn't open my mouth, let alone eat or even drink anything. I went an entire day without getting anything into my mouth. The next day I choked down some soup while crying. The next day I got Percocet, which sent me right back into a drug-induced fog.
Eventually the sores all cleared up. Just in time for my blood counts to drop. I then spent the next week almost entirely in the hospital, getting platelet and blood transfusions. I needed more platelet transfusions than blood transfusions, which is a shame because I'm "allergic" to platelets. Years ago, during one of my very first platelet transfusions, I had an allergic reaction while receiving the yellow liquid. My face turned bright red and it burned and itched like crazy. The nurses informed me that this is not an uncommon reaction; it was called, fittingly, "Red Man's Syndrome". The nurses very quickly administered Benadryl via IV and the heat and itch were quelled. But, so was I; Benadryl puts me to sleep faster than any other medicine I've ever taken except general anesthesia. Morphine and codeine just can't compete with IV Benadryl - it's like a thousand pounds of pressure are pushing down on my eyelids and I can do nothing but let them drop. I can feel it enter my veins and then travel through my body. It's insane. Each part of me grows heavy and weak as the medicine runs through; from my hand through my arm down my torso running through my legs to my toes and then it goes back up to my neck to my head and then I droop. I am absolutely helpless.
Every time I am about to receive platelets now, I first receive my pre-medication of Tylenol and Benadryl as a precaution against Red Man's Syndrome. Every time I am about to receive platelets I make myself comfortable because I know that I'll be asleep for the entire transfusion.
What's sad is the platelet transfusions are extremely short. They only take 15-30 minutes to transfuse. It only takes 30 seconds for Benadryl to knock me out. I will be knocked out for the entire rest of the day. A half-hour transfusion means I am doomed to sleep for the entire day.
Blood transfusions are different. I'm not allergic to them. I don't need pre-meds. But, they're much longer than platelet transfusions. They can take 2 hours to transfuse, and it takes at least another hour beforehand for the lab to screen the blood and make sure it matches. Usually we'll be there in the hospital for at least 4 hours for a blood transfusion. They wipe me out in another way; it's just an exhausting process. I'm an impossible stick for IVs, so I have to wait for the IV team to come. There's one IV team for the entire children's hospital, so sometimes it can take a long time for them to come. Then even they can't always get the IV in me with one stick. My arms are always black and blue. Then I just wait for the blood to be ready and wait for it to transfuse. Afterwards, I'll go home and sleep.
If I had known how much this chemo was going to take out of me, I don't know if I would have signed up for more college classes, or maybe I just would have signed up for one or two, not four. It's hard to make up so much work at once, and I'm still struggling. I like the classes though, and I especially like having something to do when I am feeling well, but in the meantime I just have to do what I can.
Wednesday, December 2, 2009
You Don't Look That Sick
There was one time when my dad and I were coming back from my regular pediatrician’s office when we stopped in at a toy store, just for fun. I found a tray of pretty rhinestone letters that could be slipped onto a bracelet to form whatever words you wanted. My dad agreed to let me buy the letters for my name – thankfully I had a short name! After carefully picking out the best 4 letters I could find, we went up to the cashier at her desk at the front of the store. Right there on the side of the desk was my picture with the Hope for Hope logo. It always amused and slightly embarrassed me to see where my friends put those posters. I hadn’t been expecting one in here.
My dad stepped up to pay and the cashier took the letters from my hand.
“Wait, ‘H-O-P-E’?” she said, examining the charms. "Your name is Hope?"
“Uh…yeah,” I replied, not sure where this was going.
“Are you Hope [Last Name]? That girl on the poster and in the local newspaper? That girl who made the t-shirts and everything?”
"Yeah," I said, feeling very weird. It's weird to be recognized, especially when you don't even completely know why you're being recognized - I mean, I have cancer. It's not exactly something I asked for or wanted to be known for.
“Huh," she said. "You don’t look that sick.”
WHAT? What the heck was that supposed to mean? Was she accusing me of pretending to be sicker than I really was? Did she WANT me to look sicker? Did she WANT me to stop trying? I could, you know. I could do all of that. I still can. I can stop bothering with the hats and wigs and makeup so that you can see how weird that looks, and I can stop buying shirts that cover all my grotesque surgery scars so that you have to look at them, and I can wear a sign around my neck that says, “I’m 15, not 10, even though I look it because cancer stopped my regular growth cycles” so that you don’t keep treating me like a little kiddie and then feel shocked when I say something intelligent, and I can stop being polite and start complaining about every single thing in my body that hurts, because there’s always something, every day, so you can feel awkward and I can give up my regular life of being a teenager and just stay in the hospital all day so that you can make quilts for me, and I can stop worrying about going out when I feel sick and just throw up all over your floor so that you have to clean it up SO THAT I LOOK SICK. How’s that?
But instead of saying all of this like I wanted to, I just looked up at her, smiled, and said, “Why thank you. That has to be the nicest thing anyone has ever said to me.”
And then I walked out of there with my dad, without throwing up once.
My dad stepped up to pay and the cashier took the letters from my hand.
“Wait, ‘H-O-P-E’?” she said, examining the charms. "Your name is Hope?"
“Uh…yeah,” I replied, not sure where this was going.
“Are you Hope [Last Name]? That girl on the poster and in the local newspaper? That girl who made the t-shirts and everything?”
"Yeah," I said, feeling very weird. It's weird to be recognized, especially when you don't even completely know why you're being recognized - I mean, I have cancer. It's not exactly something I asked for or wanted to be known for.
“Huh," she said. "You don’t look that sick.”
WHAT? What the heck was that supposed to mean? Was she accusing me of pretending to be sicker than I really was? Did she WANT me to look sicker? Did she WANT me to stop trying? I could, you know. I could do all of that. I still can. I can stop bothering with the hats and wigs and makeup so that you can see how weird that looks, and I can stop buying shirts that cover all my grotesque surgery scars so that you have to look at them, and I can wear a sign around my neck that says, “I’m 15, not 10, even though I look it because cancer stopped my regular growth cycles” so that you don’t keep treating me like a little kiddie and then feel shocked when I say something intelligent, and I can stop being polite and start complaining about every single thing in my body that hurts, because there’s always something, every day, so you can feel awkward and I can give up my regular life of being a teenager and just stay in the hospital all day so that you can make quilts for me, and I can stop worrying about going out when I feel sick and just throw up all over your floor so that you have to clean it up SO THAT I LOOK SICK. How’s that?
But instead of saying all of this like I wanted to, I just looked up at her, smiled, and said, “Why thank you. That has to be the nicest thing anyone has ever said to me.”
And then I walked out of there with my dad, without throwing up once.
Sunday, November 29, 2009
A Wish for Normality
It's been a while since I felt "normal".
I guess I could mean this in a million ways. For the most part, right now I mean it's been weeks since I felt like my usual self, without any fuzziness or weakness or lethargy or dullness. I have to fight against succumbing to it all. It would be so easy to just sleep and ignore everything in its entirety. But I have to keep going, or I'll never get back up. But it's so hard.
With the chemo, I've had a week of absolute loopiness, 2 weeks of pain with more loopiness, and another week of low blood counts. It's been a month of actually feeling like a cancer patient. Even though I've been going through treatment for more than 6 years, I usually manage to feel pretty well, and it's easy to forget that I have cancer. Maybe that's not exactly what I mean. It's more like, I can go for long periods of time without ever thinking, "I am sick", or "I have cancer". It's just, "I am me." But the great irony of chemotherapy is that it is designed to make you better while actively making you feel sick. When I'm not undergoing any treatment, I feel fine. When I go through a treatment, I feel sick. This has always been one of the most horrible parts of this whole ordeal: the treatment often makes me feel worse than the cancer does.
That doesn't mean I'm ready to stop it. Nor do I believe I'll be ready to stop it any time soon, if ever. I'll keep doing whatever I have to do to get rid of the cancer, because I know in my head that it's the real cause of my pain. I wouldn't need treatment if I didn't have cancer, and if I went without treatment for prolonged periods of time, the cancer itself would start causing pain.
I'm just really ready to start recovering.
I guess I could mean this in a million ways. For the most part, right now I mean it's been weeks since I felt like my usual self, without any fuzziness or weakness or lethargy or dullness. I have to fight against succumbing to it all. It would be so easy to just sleep and ignore everything in its entirety. But I have to keep going, or I'll never get back up. But it's so hard.
With the chemo, I've had a week of absolute loopiness, 2 weeks of pain with more loopiness, and another week of low blood counts. It's been a month of actually feeling like a cancer patient. Even though I've been going through treatment for more than 6 years, I usually manage to feel pretty well, and it's easy to forget that I have cancer. Maybe that's not exactly what I mean. It's more like, I can go for long periods of time without ever thinking, "I am sick", or "I have cancer". It's just, "I am me." But the great irony of chemotherapy is that it is designed to make you better while actively making you feel sick. When I'm not undergoing any treatment, I feel fine. When I go through a treatment, I feel sick. This has always been one of the most horrible parts of this whole ordeal: the treatment often makes me feel worse than the cancer does.
That doesn't mean I'm ready to stop it. Nor do I believe I'll be ready to stop it any time soon, if ever. I'll keep doing whatever I have to do to get rid of the cancer, because I know in my head that it's the real cause of my pain. I wouldn't need treatment if I didn't have cancer, and if I went without treatment for prolonged periods of time, the cancer itself would start causing pain.
I'm just really ready to start recovering.
Thursday, November 19, 2009
Chemo #572 or Some Other Ridiculously High Number
Once again, I am on chemotherapy. When I was first diagnosed with neuroblastoma more than 6 years ago, I was told that my "plan" was to go through 5 rounds of chemo, followed by up to 2 stem cell transplants and possibly some other radiation treatment thrown in. That seemed like so much. Now I look back on that and think how little that seems. All in all, that would have taken 1, maybe 1 and a half years.
Clearly, things didn't go according to plan.
I got those first 5 rounds of chemo, and then a stem cell transplant, just like the doctors planned, but then things went wrong. The stem cell transplant didn't take the way they'd hoped it would; I nearly died. To this day there is still a huge gap in my memory from the time that I received that stem cell transplant until the time when I finally started recovering from it. There is a whole February I do not remember.
Since that went so badly, they definitely couldn't give me the second transplant, and things were so shaky that radiation was looking like a bad idea too. But that's when the MIBG treatment came into play for the first time. That really saved me the first time around.
Since then, I've been on more chemos - at least 5 others, if not more. Most of these were oral, so they were "easier" than the first 5. But, of course, they all had their sets of drawbacks. I feel like I've had just about every side effect you could possibly have after undergoing all these different treatments.
Why do I let myself think these things? It only leads to trouble.
Sure enough, enter chemo #I've lost track. This chemo, right now called "Millenium" after its manufacturer, is, like many of my others, a trial drug. This means I'm only on it as part of a study. I had to meet many certain specifics to qualify for this study, and trust me, that was not easy. I could write a novel on that alone if I had to. Hopefully I never have to. It's not that fun. But, I ended up qualifying for a Phase II trial study, which means that Phase I has already been completed. This is actually a pretty good thing; it means that this drug has already been tested on a group of people (albeit a small group of people), so hopefully dosages are figured out and side effects are generally known. I've been on more than my fair share of Phase I trials so I've had the pleasure of being the guinea pig for chemotherapy; I've gotten to test the correct dosage and discover side effects myself. I actually always feel bad for the other people who will in the future end up taking whatever chemo I was on as a Phase I, because I skew results: no matter what, I always tend to do the opposite of what's expected, so I don't think I'm a good judge for what "should" happen for others! I probably scare them when they hear of all the reactions I've had, but in truth it's probably a good thing for them - it means they probably won't experience any of it!
So, Phase II. I was pretty happy. No fiddling with dosages! I'd have some kind of idea of what to expect!
Again, I've got to stop letting myself think these kinds of things. They're dangerous.
My doctor warned me that the major side effect of this drug is "euphoria". Sounds horrible, right? I know. My doctor explained that this chemo was a relative of Ativan and Valium, and that other kids who took this medicine would sometimes feel as if they'd overdosed on Valium for about an hour or two after taking it. Parents described seeing their kids acting somewhat drunk. While some might enjoy this effect, it's really not my thing; I don't like the feeling of not having control. But, as far as chemo side effects go, I wasn't worried. It sounded easily manageable, and that was really the one major side effect besides hair loss, which doesn't bother me at all anymore. I've been through the hair loss thing like 6 times now. It's cool. I know how to deal with that. And I figured I could easily deal with "euphoria" too. Plus, no nausea! It all sounded pretty okay to me. The doctor also mentioned a couple of other possible side effects, such as mouth sores or stomach pains, and did say that I would experience a drop in my blood counts like with most chemos, but in general the chemo was being tolerated pretty well.
So I'm given a bottle of pills and told to take 4 a day for 7 days. I take the 4 for the first day and feel a fuzzyheaded effect, but it wasn't too much. Then, instead of it wearing off, it gets worse. I start to lose focus and can't concentrate on anything; my mom says I could barely hold my head up and she watched me worriedly as I let my head drop to the side. I didn't move from the couch for the rest of the day. But we still weren't worried; this could happen, and we hoped it would wear off while I was sleeping.
But it didn't. I woke up still fuzzyheaded and unable to concentrate; I felt slow and loopy.
This went on for the whole entire 7 days.
Sure, I didn't feel nausea, but then again I didn't feel anything at all except...fog. The doctors kept saying that it would start wearing off, but in truth they couldn't know that. They did know that it wasn't really dangerous since I wasn't going anywhere, and that as long as nothing serious happened (like I stopped breathing), I'd be okay and that there wasn't much to do unless I stopped the chemo altogether. But I had worked too hard to get on that study to just give up the first 7 days I'm on it. I was well enough; I'd keep going.
As soon as those 7 days were over and I stopped taking the medicine, my head cleared up.
Unfortunately something else took its place.
It wasn't the first time I'd had mouth sores; it was just the worst. I'd had them a long time ago after some other chemo, but they were minor; it had just been a few mildly irritating bumps in my mouth, nothing more. But this time, there was pain. The first day started off as just a few mildly irritating bumps, but the second day I felt pricks of pain. By the third day, those first sores had disappeared but new, larger ones appeared, and practically paralyzed the left side of my mouth with pain. I couldn't open my mouth. I definitely couldn't eat. I was hungry, but I couldn't even get water in. I went through that day without anything to eat and with a lot of pain. It was the first time I'd cried in a while. By the second day, the left side felt slightly better; the right start had a new sore though. I managed to choke down some soup. Not much else. More pain. On the third day, I finally felt like I could try something really really soft; I think I had a little bit of mashed potatoes, but mostly ate more soup. On the fourth day, my throat developed a sore. It became near impossible to swallow. But by this point, my doctor had gotten me some Percocet. Oxycodone to the rescue! It gave me some periods of relative ease; while it still hurt to eat, it became more manageable. Unfortunately, the Percocet started making me fuzzyheaded again. It was maddening. I dealt with more mouth sores and pain for the rest of the week, and more Percocet and its effect for the same amount of time.
At the same time, my blood counts were starting to drop. This meant that I was running low on platelets and red blood, and would soon need a transfusion of one or the other or both. I had to get my blood taken and checked every other day, while I was already in pain and practically unaware of my surroundings. I was scheduled for a CT scan and MIBG injection yesterday at CHOP, and an MIBG scan today. Instead, I went into CHOP on Tuesday for a platelet transfusion, which involves me getting premedicated with Tylenol and Benadryl and being knocked out by the Benadryl for the rest of the day. More fuzzyheadedness. I can't seem to escape it. I had to cancel the CT scan because of the pain of sores I still have. I got the MIBG scan today.
The good news is that the MIBG scan showed slightly better results than even the last time, which means that at least the chemo has done something, even if it is slight. Plus, my doctor is going to change my dosage so that I receive less, and hopefully this will help alleviate the "euphoria" and pain. The bad news is, my counts are still low and I have to be careful because I'm at risk for infection. Plus, I have to restart the chemo on Monday.
All in all, it hasn't been a great two weeks, and this week isn't shaping up to be the best one either. I'm really looking foward to Thanksgiving though; I can't wait to see my friends again and just have something normal return to my life. I need something happy. I only hope that I can manage to stay well and that the lower dose of chemo works to prevent me from staying loopy for 24 hours a day. I need to believe right now that I will be okay, that things will work out, and that I will be able to see my friends for Thanksgiving. It's what keeps me going.
Clearly, things didn't go according to plan.
I got those first 5 rounds of chemo, and then a stem cell transplant, just like the doctors planned, but then things went wrong. The stem cell transplant didn't take the way they'd hoped it would; I nearly died. To this day there is still a huge gap in my memory from the time that I received that stem cell transplant until the time when I finally started recovering from it. There is a whole February I do not remember.
Since that went so badly, they definitely couldn't give me the second transplant, and things were so shaky that radiation was looking like a bad idea too. But that's when the MIBG treatment came into play for the first time. That really saved me the first time around.
Since then, I've been on more chemos - at least 5 others, if not more. Most of these were oral, so they were "easier" than the first 5. But, of course, they all had their sets of drawbacks. I feel like I've had just about every side effect you could possibly have after undergoing all these different treatments.
Why do I let myself think these things? It only leads to trouble.
Sure enough, enter chemo #I've lost track. This chemo, right now called "Millenium" after its manufacturer, is, like many of my others, a trial drug. This means I'm only on it as part of a study. I had to meet many certain specifics to qualify for this study, and trust me, that was not easy. I could write a novel on that alone if I had to. Hopefully I never have to. It's not that fun. But, I ended up qualifying for a Phase II trial study, which means that Phase I has already been completed. This is actually a pretty good thing; it means that this drug has already been tested on a group of people (albeit a small group of people), so hopefully dosages are figured out and side effects are generally known. I've been on more than my fair share of Phase I trials so I've had the pleasure of being the guinea pig for chemotherapy; I've gotten to test the correct dosage and discover side effects myself. I actually always feel bad for the other people who will in the future end up taking whatever chemo I was on as a Phase I, because I skew results: no matter what, I always tend to do the opposite of what's expected, so I don't think I'm a good judge for what "should" happen for others! I probably scare them when they hear of all the reactions I've had, but in truth it's probably a good thing for them - it means they probably won't experience any of it!
So, Phase II. I was pretty happy. No fiddling with dosages! I'd have some kind of idea of what to expect!
Again, I've got to stop letting myself think these kinds of things. They're dangerous.
My doctor warned me that the major side effect of this drug is "euphoria". Sounds horrible, right? I know. My doctor explained that this chemo was a relative of Ativan and Valium, and that other kids who took this medicine would sometimes feel as if they'd overdosed on Valium for about an hour or two after taking it. Parents described seeing their kids acting somewhat drunk. While some might enjoy this effect, it's really not my thing; I don't like the feeling of not having control. But, as far as chemo side effects go, I wasn't worried. It sounded easily manageable, and that was really the one major side effect besides hair loss, which doesn't bother me at all anymore. I've been through the hair loss thing like 6 times now. It's cool. I know how to deal with that. And I figured I could easily deal with "euphoria" too. Plus, no nausea! It all sounded pretty okay to me. The doctor also mentioned a couple of other possible side effects, such as mouth sores or stomach pains, and did say that I would experience a drop in my blood counts like with most chemos, but in general the chemo was being tolerated pretty well.
So I'm given a bottle of pills and told to take 4 a day for 7 days. I take the 4 for the first day and feel a fuzzyheaded effect, but it wasn't too much. Then, instead of it wearing off, it gets worse. I start to lose focus and can't concentrate on anything; my mom says I could barely hold my head up and she watched me worriedly as I let my head drop to the side. I didn't move from the couch for the rest of the day. But we still weren't worried; this could happen, and we hoped it would wear off while I was sleeping.
But it didn't. I woke up still fuzzyheaded and unable to concentrate; I felt slow and loopy.
This went on for the whole entire 7 days.
Sure, I didn't feel nausea, but then again I didn't feel anything at all except...fog. The doctors kept saying that it would start wearing off, but in truth they couldn't know that. They did know that it wasn't really dangerous since I wasn't going anywhere, and that as long as nothing serious happened (like I stopped breathing), I'd be okay and that there wasn't much to do unless I stopped the chemo altogether. But I had worked too hard to get on that study to just give up the first 7 days I'm on it. I was well enough; I'd keep going.
As soon as those 7 days were over and I stopped taking the medicine, my head cleared up.
Unfortunately something else took its place.
It wasn't the first time I'd had mouth sores; it was just the worst. I'd had them a long time ago after some other chemo, but they were minor; it had just been a few mildly irritating bumps in my mouth, nothing more. But this time, there was pain. The first day started off as just a few mildly irritating bumps, but the second day I felt pricks of pain. By the third day, those first sores had disappeared but new, larger ones appeared, and practically paralyzed the left side of my mouth with pain. I couldn't open my mouth. I definitely couldn't eat. I was hungry, but I couldn't even get water in. I went through that day without anything to eat and with a lot of pain. It was the first time I'd cried in a while. By the second day, the left side felt slightly better; the right start had a new sore though. I managed to choke down some soup. Not much else. More pain. On the third day, I finally felt like I could try something really really soft; I think I had a little bit of mashed potatoes, but mostly ate more soup. On the fourth day, my throat developed a sore. It became near impossible to swallow. But by this point, my doctor had gotten me some Percocet. Oxycodone to the rescue! It gave me some periods of relative ease; while it still hurt to eat, it became more manageable. Unfortunately, the Percocet started making me fuzzyheaded again. It was maddening. I dealt with more mouth sores and pain for the rest of the week, and more Percocet and its effect for the same amount of time.
At the same time, my blood counts were starting to drop. This meant that I was running low on platelets and red blood, and would soon need a transfusion of one or the other or both. I had to get my blood taken and checked every other day, while I was already in pain and practically unaware of my surroundings. I was scheduled for a CT scan and MIBG injection yesterday at CHOP, and an MIBG scan today. Instead, I went into CHOP on Tuesday for a platelet transfusion, which involves me getting premedicated with Tylenol and Benadryl and being knocked out by the Benadryl for the rest of the day. More fuzzyheadedness. I can't seem to escape it. I had to cancel the CT scan because of the pain of sores I still have. I got the MIBG scan today.
The good news is that the MIBG scan showed slightly better results than even the last time, which means that at least the chemo has done something, even if it is slight. Plus, my doctor is going to change my dosage so that I receive less, and hopefully this will help alleviate the "euphoria" and pain. The bad news is, my counts are still low and I have to be careful because I'm at risk for infection. Plus, I have to restart the chemo on Monday.
All in all, it hasn't been a great two weeks, and this week isn't shaping up to be the best one either. I'm really looking foward to Thanksgiving though; I can't wait to see my friends again and just have something normal return to my life. I need something happy. I only hope that I can manage to stay well and that the lower dose of chemo works to prevent me from staying loopy for 24 hours a day. I need to believe right now that I will be okay, that things will work out, and that I will be able to see my friends for Thanksgiving. It's what keeps me going.
Sunday, November 8, 2009
I am content.
I can say this truly and honestly, even with all of the problems I have in my life.
But being content has very little to do with your circumstances and everything to do with your attitude and the choices you make.
I am content because I choose to be.
Sometimes you're suddenly struck with an epiphany and you will forever remember your lesson. But most of the time you have to consciously remind yourself to follow what you know to be right. We have to remind ourselves to be polite, or to not be too hard on ourselves, or that winning isn't everything/the world is not a competition, and on and on.
This is something I have to do to be content and, even more than that, to be happy.
I have to remind myself how much better life feels when I'm happy, and remind myself that I always have a choice. I can choose to be happy, or I can choose to be sad or angry. While sometimes you may feel like you'd be happier getting upset or mopey, you'll remember that you're really just trying to be happy. If you're not convinced, think about which option you'd choose if you were feeling fine. Even just thinking of being happy can influence your mood for the positive.
I can say this truly and honestly, even with all of the problems I have in my life.
But being content has very little to do with your circumstances and everything to do with your attitude and the choices you make.
I am content because I choose to be.
Sometimes you're suddenly struck with an epiphany and you will forever remember your lesson. But most of the time you have to consciously remind yourself to follow what you know to be right. We have to remind ourselves to be polite, or to not be too hard on ourselves, or that winning isn't everything/the world is not a competition, and on and on.
This is something I have to do to be content and, even more than that, to be happy.
I have to remind myself how much better life feels when I'm happy, and remind myself that I always have a choice. I can choose to be happy, or I can choose to be sad or angry. While sometimes you may feel like you'd be happier getting upset or mopey, you'll remember that you're really just trying to be happy. If you're not convinced, think about which option you'd choose if you were feeling fine. Even just thinking of being happy can influence your mood for the positive.
Haze
When I have the chance to say something, I take it. Even when I'm not sure what I'm saying.
It's dangerous.
But sometimes it's helpful.
I don't know if it's better for me, or for others, or for no one at all. Maybe I shouldn't say anything.
I know I'm in a haze. But I don't realize how much until after I've already made a mistake.
Chemo brain.
Nonsense ramblings.
Or something?
I won't remember.
It's dangerous.
But sometimes it's helpful.
I don't know if it's better for me, or for others, or for no one at all. Maybe I shouldn't say anything.
I know I'm in a haze. But I don't realize how much until after I've already made a mistake.
Chemo brain.
Nonsense ramblings.
Or something?
I won't remember.
Wednesday, November 4, 2009
My brain swims.
I watch it go, from somewhere close, but far, far away.
My arms are limp.
My head is weighted down.
How can I be loose and so, so heavy?
How can I be on the other side of the room when I can't move from the couch?
I can't trust my eyes.
I know I have two brothers, but do I have two Moms, or two Dads? Or two lives?
Why is everything double?
Which one is real?
If I reach out my hand...
Use what little strength I have left to stretch my arm...
Can I grab the truth?
Or would it not be worth the effort?
I watch it go, from somewhere close, but far, far away.
My arms are limp.
My head is weighted down.
How can I be loose and so, so heavy?
How can I be on the other side of the room when I can't move from the couch?
I can't trust my eyes.
I know I have two brothers, but do I have two Moms, or two Dads? Or two lives?
Why is everything double?
Which one is real?
If I reach out my hand...
Use what little strength I have left to stretch my arm...
Can I grab the truth?
Or would it not be worth the effort?
Tuesday, November 3, 2009
Chemo in a Pill (or 4)
Yesterday morning I went back to CHOP to begin a new chemo treatment. Even though the radioactive treatment I received has worked even better than my doctors hoped it would, there is still cancer in my body. It may be the smallest it's been yet, but it's still there, and the doctors hope that by treating it now, we can keep it small and relatively un-harmful, or maybe possibly even shrink it more. While the ultimate hope for any treatment is to shrink the cancer so much as to make it disappear completely, things have always been different for me. That dream is always there, but it's a far, distant dream. The most we usually let ourselves hope for is to keep it small and treat it as a chronic disease; and for the most part, that's what we do.
This new chemotherapy I just started yesterday is part of a Phase II trial study, meaning they've already tested it on some people in Phase I - but not very many. Trial studies are always tricky; they are the most recent breakthroughs in modern medicine, but they're untested. Doctors aren't yet sure of dosages, reactions, or long-term effects. But when you've exhausted all other options, you go to the studies. I've already tried a few different trial studies.
Phase II means that they have a general idea of side effects and the best dosage. Phase II is better to be on than Phase I if you can afford to wait a bit. In the past, I couldn't, so I have been on Phase Is before. Phase II practically seems like a luxury now.
I took my first dose of this new chemo yesterday at about 1:15 pm. The dosage is 4 pills, each a little larger than an average Tylenol capsule. This worried me; I have never been good at taking medication orally, and swallowing pills wasn't even possible until I went to my miracle-worker/acupuncturist more than a year ago. She's done many things I thought were impossible, so it didn't completely surprise me when, after the careful application of a few needles, she was able to get me to be able to swallow pills. Still, I feel more comfortable with smaller pills, so the size of these pills worried me - and they wanted me to take 4 a day? I was nervous. Even my mom looked worried. But, I shouldn't have doubted the abilities of my acupuncturist. My throat was wide enough to get those pills down, one at a time.
Now all I had to worry about was the side effects. As this chemo is truly like the other chemotherapies I've had to have, I would have to be ready for hair loss and blood count drops. For some reason, though, nausea isn't something I have to worry about too much. Thank goodness for small miracles. However, there was one other side effect that many of the patients had to deal with: "euphoria". I couldn't tell whether or not I wanted this side effect! It sounded like an okay one to me! My mom jokingly asked my doctor, "Can I get those for my sons too? It would be nice to have 3 happy teenagers in my house for once! And maybe some for me too?" As it turns out, this chemo is "related" to the medicines Ativan and Valium, which both can be taken as anti-anxiety medications that mellow you out. For some people taking this chemo, they would experience a feeling similar to that of overdosing on Ativan or Valium and feeling really, really loose and "drunk-happy", and it would happen 2-3 hours after taking the pills.
3 hours later, I'm sitting on my couch back at home, and I start to realize that my head is feeling light and my brain isn't focusing on anything much at all. It takes a couple tries for me to reply to questions when asked and, although I don't feel elated or even happy, exactly, I don't feel bad either. I just feel very loose and loopy. It was an extreme chemo brain.
So now, tonight, I'll take my chemo right before I go to bed, so that I can hopefully sleep through my period of mush-brain.
Oh, and I'm pretty much banned from driving for the week.
This new chemotherapy I just started yesterday is part of a Phase II trial study, meaning they've already tested it on some people in Phase I - but not very many. Trial studies are always tricky; they are the most recent breakthroughs in modern medicine, but they're untested. Doctors aren't yet sure of dosages, reactions, or long-term effects. But when you've exhausted all other options, you go to the studies. I've already tried a few different trial studies.
Phase II means that they have a general idea of side effects and the best dosage. Phase II is better to be on than Phase I if you can afford to wait a bit. In the past, I couldn't, so I have been on Phase Is before. Phase II practically seems like a luxury now.
I took my first dose of this new chemo yesterday at about 1:15 pm. The dosage is 4 pills, each a little larger than an average Tylenol capsule. This worried me; I have never been good at taking medication orally, and swallowing pills wasn't even possible until I went to my miracle-worker/acupuncturist more than a year ago. She's done many things I thought were impossible, so it didn't completely surprise me when, after the careful application of a few needles, she was able to get me to be able to swallow pills. Still, I feel more comfortable with smaller pills, so the size of these pills worried me - and they wanted me to take 4 a day? I was nervous. Even my mom looked worried. But, I shouldn't have doubted the abilities of my acupuncturist. My throat was wide enough to get those pills down, one at a time.
Now all I had to worry about was the side effects. As this chemo is truly like the other chemotherapies I've had to have, I would have to be ready for hair loss and blood count drops. For some reason, though, nausea isn't something I have to worry about too much. Thank goodness for small miracles. However, there was one other side effect that many of the patients had to deal with: "euphoria". I couldn't tell whether or not I wanted this side effect! It sounded like an okay one to me! My mom jokingly asked my doctor, "Can I get those for my sons too? It would be nice to have 3 happy teenagers in my house for once! And maybe some for me too?" As it turns out, this chemo is "related" to the medicines Ativan and Valium, which both can be taken as anti-anxiety medications that mellow you out. For some people taking this chemo, they would experience a feeling similar to that of overdosing on Ativan or Valium and feeling really, really loose and "drunk-happy", and it would happen 2-3 hours after taking the pills.
3 hours later, I'm sitting on my couch back at home, and I start to realize that my head is feeling light and my brain isn't focusing on anything much at all. It takes a couple tries for me to reply to questions when asked and, although I don't feel elated or even happy, exactly, I don't feel bad either. I just feel very loose and loopy. It was an extreme chemo brain.
So now, tonight, I'll take my chemo right before I go to bed, so that I can hopefully sleep through my period of mush-brain.
Oh, and I'm pretty much banned from driving for the week.
Thursday, October 22, 2009
Thoughts After A Bone Marrow Biopsy, a CT Scan, and an MIBG Scan
After a hellish three days of a bone marrow biopsy and scans, barely being able to walk from a sore back, waiting for hours, a gallon of apple juice and contrast, living in the bathroom, going without food, being prodded with 3 IVs, and tasting nothing but anesthesia for a day, scans have come back even cleaner than before. My lymph nodes have always been chock full of cancer - and today they're completely clean, no signs of cancer there. Things keep getting better.
New chemo may or may not happen next week or the week after. My liver tests are still slightly high. The docs want to attack while there's so little to go after, to maybe get rid of everything, but if my liver tests don't come down, they feel comfortable with giving me a break for a little while. The new chemo is supposed to lower my counts, which means I'd probably get sick and need blood again - but so far it's had a tremendous effect on the people it's been given to. So, as always, good with the bad. We'll see what happens. I feel like, if my liver functions come down and I get the chemo, it's because that's what God wanted and it's meant to be. If they don't and I take a break from chemo/treatment, then that's what God wanted and it's meant to be. Either way, the only thing I can think is that what will happen will happen and it will be for the best.
New chemo may or may not happen next week or the week after. My liver tests are still slightly high. The docs want to attack while there's so little to go after, to maybe get rid of everything, but if my liver tests don't come down, they feel comfortable with giving me a break for a little while. The new chemo is supposed to lower my counts, which means I'd probably get sick and need blood again - but so far it's had a tremendous effect on the people it's been given to. So, as always, good with the bad. We'll see what happens. I feel like, if my liver functions come down and I get the chemo, it's because that's what God wanted and it's meant to be. If they don't and I take a break from chemo/treatment, then that's what God wanted and it's meant to be. Either way, the only thing I can think is that what will happen will happen and it will be for the best.
Monday, October 19, 2009
Things I've Learned From You, and Things I Hope You Can Learn From Me
Remember that things don’t always have to be perfect. There is always beauty to be found in imperfections; in breakdowns; even in chaos. Sometimes you have to dig for it, and sometimes you’re suddenly just struck, but it’s always there. You just have to be open to it. Experience everything. Don’t shy away. All things happen to you so something else can happen to you, and where there are low moments, there are bound to be good ones as well. Seek them.
Don’t worry. Life will happen to you anyway. Take what you are given and do whatever you can with it. Make it what you want. Build around things you cannot change but never give up on the hope that someday change will be possible. Experience things as they happen; if that means you have to slow down and stop making so many plans, do it. If it means that you need to get out of the past and rejoin the present, do that. Try a day of spontaneity: don’t plan anything beforehand, just listen to what you want in that moment and follow it. No worrying allowed. Be free. No expectations, no regrets. Listen to yourself.
Don’t judge. Don’t make decisions based on hastily formed opinions. Hear and welcome all sides. Feel compassion. Try for sympathy and maybe you’ll even find empathy. In that, you can also find healing. Discover patience. Be open and adventurous and try new things. Keep learning.
Don’t take things so seriously – including yourself. Be able to laugh at yourself without hurting. See yourself as your friends see you and remember that you are loved. You are great. Value your friends’ opinions enough to understand that they wouldn’t be friends with someone who wasn’t! Don’t feel unloved if you are not the center of attention. Attention only matters if it’s from those who matter to you, and because you matter to them, too, you don’t even need it. The opinions of others only become important if you let yourself take them all the way to your heart. It’s up to you if you want to let yourself do that.
Don’t be afraid to make mistakes. You can make as many as you want, as long as you learn from them and carry the lesson with you. The amount of lessons you carry is directly proportional to your level of knowledge and wisdom. If you know that you were wrong, be proud, because it means that you are smarter now than you were then.
Remember to take some time for yourself. See friends. Be with family. Relax. Rest. It’s all needed. Go out there and do whatever you want or need to do, but make sure you always come back to you. Don’t lose yourself. Don’t be frustrated if you can’t do all that you want to do – know that with whatever it is you do get to do, you are directly affecting others, and someone’s life is better because of your efforts. Do what you can for your section of the world, but don’t take on too much. Leave the other sections for the other people they belong to – don’t be selfish!
Laugh as much as you can.
Love as much as you can.
Live every day of your life.
Don’t worry. Life will happen to you anyway. Take what you are given and do whatever you can with it. Make it what you want. Build around things you cannot change but never give up on the hope that someday change will be possible. Experience things as they happen; if that means you have to slow down and stop making so many plans, do it. If it means that you need to get out of the past and rejoin the present, do that. Try a day of spontaneity: don’t plan anything beforehand, just listen to what you want in that moment and follow it. No worrying allowed. Be free. No expectations, no regrets. Listen to yourself.
Don’t judge. Don’t make decisions based on hastily formed opinions. Hear and welcome all sides. Feel compassion. Try for sympathy and maybe you’ll even find empathy. In that, you can also find healing. Discover patience. Be open and adventurous and try new things. Keep learning.
Don’t take things so seriously – including yourself. Be able to laugh at yourself without hurting. See yourself as your friends see you and remember that you are loved. You are great. Value your friends’ opinions enough to understand that they wouldn’t be friends with someone who wasn’t! Don’t feel unloved if you are not the center of attention. Attention only matters if it’s from those who matter to you, and because you matter to them, too, you don’t even need it. The opinions of others only become important if you let yourself take them all the way to your heart. It’s up to you if you want to let yourself do that.
Don’t be afraid to make mistakes. You can make as many as you want, as long as you learn from them and carry the lesson with you. The amount of lessons you carry is directly proportional to your level of knowledge and wisdom. If you know that you were wrong, be proud, because it means that you are smarter now than you were then.
Remember to take some time for yourself. See friends. Be with family. Relax. Rest. It’s all needed. Go out there and do whatever you want or need to do, but make sure you always come back to you. Don’t lose yourself. Don’t be frustrated if you can’t do all that you want to do – know that with whatever it is you do get to do, you are directly affecting others, and someone’s life is better because of your efforts. Do what you can for your section of the world, but don’t take on too much. Leave the other sections for the other people they belong to – don’t be selfish!
Laugh as much as you can.
Love as much as you can.
Live every day of your life.
Saturday, October 17, 2009
Which Would You Choose: CAT scan, MIBG scan, or bone marrow biopsy?
Unfortunately for me, it's not a choice; I get to have all three! Tomorrow, Monday morning, I go in for a bone marrow biopsy, which means I am not allowed to eat before the surgery and have to be at the Children's Hospital of Philadelphia (CHOP) at 8:00 am. Hopefully they take me in early, and I get put under general anesthesia. The doctors then proceed to stick a huge needle into my back hip bones to extract the marrow, checking to see if the cancer has reached it there. Once they're done with that delightful business, they slap on some cushy bandages and wake me up! Now, this may be weird, but this may be the easiest test out of the three I'm to receive this week, and this test doesn't bother me in the slightest. I am totally used to gigantic needles being stuck into my backside while I'm out cold and I don't even know it. It takes maybe 5 minutes total, and I wake up pretty quickly and easily from anesthesia, so no bother. For all I knew, I was out for days, or 2 seconds, and even "now" means very little when I wake up. Normally I want to go back to sleep, but after a few shakes from my mom I'll be up. I can take a nap in the car ride home if I want. Then I'll be sore for a few days and be good as new later.
I get to return to CHOP on Tuesday for a CAT (or CT) scan and to receive the contrast intravenously for my MIBG scan scheduled for the next day. This is probably my least favorite day of the three. First of all, I again can't eat before the test. Instead, I get to drink an entire jug of apple juice mixed with contrast - half while on the way to CHOP at 6 in the morning, half when we get there. Now, this is not fun for anyone, but it's particular torture for me. I don't like to drink...well, much of anything, really. I drink maybe a bottle of water a day, and somehow I'm not dehydrated. I almost never get thirsty, although my mouth will get dry. That's pretty much the only reason I ever feel like drinking something - because my mouth is dry. Also, I can't stand ingesting that much of anything. Putting too much in my mouth at any one time makes me feel sick. I am the slowest eater in the world because of this. So, this contrast-drinking takes me double the amount of time it would take for most other people, and it causes me physical pain. This might be the only test you've heard of, and it's the only one I really truly dislike! The actual test itself is never much fun for me either. I lay down on a thin section of the machine (which, after a bone marrow biopsy, kind of hurts my backside) and put my arms above my head, just like I'm told to. The board I'm laying on then moves backward so that my head and body is in the middle of a large open circle, with the magnetic imaging strip moving through this circle. At times I'm told to "breathe in, and hold". Just when I think I can't hold it anymore without imploding, the soothing lady's voice comes back through the speakers telling me to "breathe". Then a nurse comes in to inject more contrast into me through my IV. This dye sends heat to my throat and puts pressure on my bladder, and if it goes too fast it can make me dizzy. I have to warn the nurse of this beforehand every time. These sensations last for a few minutes until the end of the test, when the nurse comes back and flushes my IV with heparin and saline. Then, finally, that test is done. In total, it probably takes about 20-30 minutes.
I then go to the Nuclear Medicine section of the hospital, where I meet with the MIBG scan nurses, most of whom I've known since I started going there more than 6 years ago. The "MIBG" in "MIBG scan" stands for something, but even after all this time I don't know what that something is! In fact, very few of the doctors do! I do know that it's a big long word that seems to travel down most of the page when typed out, and as much as I love big words, I don't much love big unpronounceable words that are rarely ever used in conversation. I also know that it is another scanning machine, similar to a CT scan, that uses an injected contrast. However, this one's different. The contrast, which is what the MIBG actually is, is a radioactive medicine that only sticks to neuroblastoma cells, and under the scanning machine, it makes them glow. Because it only sticks to neuroblastoma cells, MIBG scans are only given to neuroblastoma patients, so the nurses working there come to know the kids who receive these scans very well, since they're always the same kids. This also means that there are only a few of these machines in the entire world. The contrast has to be injected on a Tuesday because the medicine is flown in all the way from Canada on Monday, so I will always have MIBG injections on Tuesdays! The dye then has to stay in my body for a full 24 hours, so after the MIBG injection on Tuesday, we drive back home.
On Wednesday morning, we come back for the actual MIBG scan. Just like the CT scan, I have to lay on a thin board, but this time the scanning part - a large flat surface - comes towards me. They have to get it lined up perfectly, and it comes as close as it possibly can to my face without actually touching. This is not a good test for the claustrophobic! It's a longer test, so they actually let me watch a movie while I'm being scanned; before I get on the board, I always go through their racks and pick a movie to watch, load it into the player on the rolling TV cart, fast forward through the previews, and hit play. Since they know me well there, they often try to find movies just for me now. Most of their other patients are much younger (the average age for a neuroblastoma patient is 2), so most of their movies are little kid movies. I'm allowed to keep my head tilted for most of the scan to watch it. The scan takes about 45 minutes - 1 hour, so I never get to see the full movie; sometimes I'll go out and rent the movie after watching the first hour so I can see the ending at home! Sometimes I don't even make it that long: I end up falling asleep during the scan.
Then, an hour later, that's it! Done. No sweat. Wednesday is always the easiest. My mom and I will often go out to eat in Philly somewhere once that is done. If we have time, we may even be able to make it to a museum or something. I love going to Cosi, getting a delicious salad, and then walking next door to Urban Outfitters! The last time we went, I walked into both Cosi and Urban Outfitters without my wig, completely bald, and it took my mom half an hour to notice this. I felt great. I always feel great when these three days are done.
I get to return to CHOP on Tuesday for a CAT (or CT) scan and to receive the contrast intravenously for my MIBG scan scheduled for the next day. This is probably my least favorite day of the three. First of all, I again can't eat before the test. Instead, I get to drink an entire jug of apple juice mixed with contrast - half while on the way to CHOP at 6 in the morning, half when we get there. Now, this is not fun for anyone, but it's particular torture for me. I don't like to drink...well, much of anything, really. I drink maybe a bottle of water a day, and somehow I'm not dehydrated. I almost never get thirsty, although my mouth will get dry. That's pretty much the only reason I ever feel like drinking something - because my mouth is dry. Also, I can't stand ingesting that much of anything. Putting too much in my mouth at any one time makes me feel sick. I am the slowest eater in the world because of this. So, this contrast-drinking takes me double the amount of time it would take for most other people, and it causes me physical pain. This might be the only test you've heard of, and it's the only one I really truly dislike! The actual test itself is never much fun for me either. I lay down on a thin section of the machine (which, after a bone marrow biopsy, kind of hurts my backside) and put my arms above my head, just like I'm told to. The board I'm laying on then moves backward so that my head and body is in the middle of a large open circle, with the magnetic imaging strip moving through this circle. At times I'm told to "breathe in, and hold". Just when I think I can't hold it anymore without imploding, the soothing lady's voice comes back through the speakers telling me to "breathe". Then a nurse comes in to inject more contrast into me through my IV. This dye sends heat to my throat and puts pressure on my bladder, and if it goes too fast it can make me dizzy. I have to warn the nurse of this beforehand every time. These sensations last for a few minutes until the end of the test, when the nurse comes back and flushes my IV with heparin and saline. Then, finally, that test is done. In total, it probably takes about 20-30 minutes.
I then go to the Nuclear Medicine section of the hospital, where I meet with the MIBG scan nurses, most of whom I've known since I started going there more than 6 years ago. The "MIBG" in "MIBG scan" stands for something, but even after all this time I don't know what that something is! In fact, very few of the doctors do! I do know that it's a big long word that seems to travel down most of the page when typed out, and as much as I love big words, I don't much love big unpronounceable words that are rarely ever used in conversation. I also know that it is another scanning machine, similar to a CT scan, that uses an injected contrast. However, this one's different. The contrast, which is what the MIBG actually is, is a radioactive medicine that only sticks to neuroblastoma cells, and under the scanning machine, it makes them glow. Because it only sticks to neuroblastoma cells, MIBG scans are only given to neuroblastoma patients, so the nurses working there come to know the kids who receive these scans very well, since they're always the same kids. This also means that there are only a few of these machines in the entire world. The contrast has to be injected on a Tuesday because the medicine is flown in all the way from Canada on Monday, so I will always have MIBG injections on Tuesdays! The dye then has to stay in my body for a full 24 hours, so after the MIBG injection on Tuesday, we drive back home.
On Wednesday morning, we come back for the actual MIBG scan. Just like the CT scan, I have to lay on a thin board, but this time the scanning part - a large flat surface - comes towards me. They have to get it lined up perfectly, and it comes as close as it possibly can to my face without actually touching. This is not a good test for the claustrophobic! It's a longer test, so they actually let me watch a movie while I'm being scanned; before I get on the board, I always go through their racks and pick a movie to watch, load it into the player on the rolling TV cart, fast forward through the previews, and hit play. Since they know me well there, they often try to find movies just for me now. Most of their other patients are much younger (the average age for a neuroblastoma patient is 2), so most of their movies are little kid movies. I'm allowed to keep my head tilted for most of the scan to watch it. The scan takes about 45 minutes - 1 hour, so I never get to see the full movie; sometimes I'll go out and rent the movie after watching the first hour so I can see the ending at home! Sometimes I don't even make it that long: I end up falling asleep during the scan.
Then, an hour later, that's it! Done. No sweat. Wednesday is always the easiest. My mom and I will often go out to eat in Philly somewhere once that is done. If we have time, we may even be able to make it to a museum or something. I love going to Cosi, getting a delicious salad, and then walking next door to Urban Outfitters! The last time we went, I walked into both Cosi and Urban Outfitters without my wig, completely bald, and it took my mom half an hour to notice this. I felt great. I always feel great when these three days are done.
Friday, October 16, 2009
The Cranes
She was sitting up in the bed, the head tilted forward and her back leaning against it. She had her legs under the sheets; it was a cool night.
"If I could take this from you, I would, in a heartbeat. We love you so much," he was telling her.
She was nodding. She kind of always knew, didn't she?
"Cancer," the doctor said.
Her dad was still talking.
She was twelve.
...................................................................
"What do you mean, your parents decided to go to dinner and drag you with them? Kristen, it's Relay for Life! They know about it! They know I'm the team captain and that you're on the team and that you're my best friend and that this means a lot to me! Why would they do that?" I yelled into the phone, pacing back and forth in my high school Commons room. Rain had forced the big cancer fundraiser event indoors this year, but it wasn't stopping the spirits of the people involved. People still had games and activities set up, and team members were dressed up and walking the track to raise money for the American Cancer Society. It was sure to be a great night.
That is, if my team showed up.
This wasn't the first year my friends were on my Relay team. They had all done this event for the past couple of years, and it was always a blast. They always managed to have a good time while honoring those whose lives had been affected by cancer, and by celebrating all the survivors and fighters. It was a giant celebration of life, and it meant so much to me, as I was still fighting the disease, more than 5 years later.
Then why were there only two people from my 10 person team here??
I was getting upset. This wasn’t even the first thing to upset me that day. Earlier, my Mom had driven me to the school – an hour early. Nothing was set up. No one was there except for one organizer, who was just starting to clean the area. Why did Mom drag me there so early? I had other things to do. I had to give a speech that day, and I wouldn’t mind having an extra hour to go over it. But my Mom insisted we stay. So we did – but only because my Mom had the car keys. And what did we do for that hour? We sat. We watched tables being set up. Mom helped. I couldn’t, being a cancer weakling and all. We sat some more after the organizers shooed Mom away. We wasted an entire hour.
But when the hour was up, I had hoped it would get better. My friends were coming!
Little did I know.
I tried calling my friends and teammates, but they all had some crazy excuse. Jackie's mom was sick and she couldn't get a ride there - but when I offered to come get her (after all, there was nothing else for me to do at the moment without a team!), she quickly yelped, "NO! No, no, no, Kristen's going to drive me!" When I pointed out that I had just spoken to Kristen and that Kristen was out at a restaurant somewhere, Jackie replied, "Oh, yeah, when she's done she's coming by and getting me."
Okay.
Zandra said her car broke down. Again with the ride offer, and again I got, "Oh, I'm coming with Jackie." Uhh, Jackie's going with Kristen...later. "Um, yeah, me too!"
Fine.
The others? Excuses at the ready, just as lame.
Whatever.
Later, Kristen, Jackie and Zandra all show up in Kristen's car. Once they got there, Mom stopped by. Mom says something about a red car being in our driveway and blocking my Grandma and Grandpa in, who were there to visit for the weekend.
"Zandra! That sounds like your car! I thought it broke down!" I cried in surprise.
"Oh! Um, yeah, it was starting to act funny right on the highway by your house, so I pulled into the large open space across your house, and your family helped me get it to your driveway so it can stay there for now."
Right.
But someone pulled me by the arm to another group's game, and I was too happy to pay much attention to this weirdness. More people were finally showing up, and this year's event was living up to its predecessors, despite the rain.
After a long time, other teams started packing up and leaving. I realized that it was time to get going, and, on my Mom's suggestion, I invited my friends back to my house to sleepover. Usually the event already is a sleepover, but with the rain, people decided to pack it up instead. My friends were eager to come over, but instead of packing up, they just hung around. What? Why was everyone being so weird?
We had planned that Kristen would drive me home, but I didn't want to go until I knew that everyone was actually coming. Some of these people had never been to my house before and might need directions or something.
"Come on, I have to peeeeeee," Kristen whined to me, pulling on my arm and dragging me towards the exit.
"Kris, we're in our school, go use the bathroom!"
"But I don't like these bathrooms, can't we go to your house?"
"Are you kidding? You use these bathrooms everyday! Look, use the nurse's bathroom, it's a single and it's clean."
"Noooo, your house!"
Suddenly, my friend Meghan came by and pulled me by the arm. Why is everyone doing that to me today?
“Come with me!” Meghan exclaimed, leading me…actually, where was she leading me?
They stopped in the middle of the commons. And stood there.
“Meghan, what the hell????”
Meghan didn’t answer.
People were finally starting to leave to head to my place. And now, apparently, I was not.
“Meghan, we should go, there are people driving to my house right now, and my grandparents are over and probably sleeping, so I should really try to get there first! Plus, Kristen really has to pee and WON’T USE THESE BATHROOMS!” I said with a pointed glare at Kristen, who looked back sheepishly.
But then Meghan grabbed me by the shoulders and had me in a kind of hug-lock so that I couldn’t really escape. As I struggled to get free, Meghan went, “Kristen, go drive to her house, I’ll drive her back!”
Kristen ran out the door.
There were only a few people left lingering in the Commons – including me and Meghan.
“MEGHAN! LET ME GO! We NEED to get back! We’re not even doing anything here! What are you doing??” I yelled.
“Hmmm….oh, fiiiiiiine,” Meghan said slowly as she watched the last of the people in the Commons file out. “Let’s go.”
They headed into Meghan’s big SUV – one of the only cars left in the parking lot – and drove off down the small highway that takes us to my house. This being a highway – albeit a small one – the speed limit is 50 mph. Meghan was driving 35 mph.
“MEGHAN. What part of ‘I need to get there fast’ don’t you understand???” I yelled.
“Oh, I just feel so calm and relaxed, and there’s no one around, we’re fine!” she replied easily.
“Most teenagers go FASTER when there’s no one around, did you know that, Meg? In fact, FASTER would be a good idea right now. You don’t even have to go past the speed limit if you want to, but the speed limit might be a good idea. You’ll have to go FASTER to get up to that though! So how about going FASTER?”
Meghan sang along with the radio.
The normally 5-minute drive took quite a bit longer than that, and every extra minute just about killed me
“Great,” I thought, “I’ve survived cancer for 5 years and now I’m about to be killed by impatience – after Relay for Life. Anyone else see the irony, or is this just chemo brain?”
We finally got there. But, just as I feared, every single car is already parked in front of my house – and the carriage house, where they were going to sleep, is dark. Where is everyone?
Meghan rushed out the car door and ran into the darkness towards the house, leaving me with the job of carrying all of our crap inside. This crap includes paper towels, Relay t-shirts, and a purple boa I won. Lacking 3 hands, I wrapped the purple boa around my neck and grabbed everything else into my arms, then made my way to the still-silent carriage house. On the way, I passed the back entrance to my actual house, where I saw my mom and grandparents standing on the back porch.
“Oh, Mom, I’m so sorry, did everyone wake you guys? I was trying so hard to get everyone here quietly – you woudn’t believe all the crazy stuff that just happened – by the way, have you seen Meghan, I have to strangle her – sorry Grandma and Grandpa – “
“Wait, hon, wait, wait, you didn’t wake us, we just stayed up and watched a movie, it’s fine, then we came out here for some air. Come inside for moment, put that stuff down,” Mom said, gesturing towards the back door.
“But where is everyone?” I started to say, but – wouldn’t you know it – I got taken hold of by the arm and led inside.
We all walked through the back door into the kitchen, and as we stepped through the kitchen towards the middle room, I saw, first, Kristen, standing straight in my line of view. Kristen’s cheeks were flaming red, something they do whenever she’s embarrassed or extremely excited or hiding a secret. As we get closer, I could see more friends standing crowdedly in the tiny room, and there was something that astounded me even more than that: cranes. Paper cranes, origami cranes, everywhere, hanging from the ceiling, big ones, little ones, a huge one sitting on the cabinet, the rest dangling from fishing line hung from one end of the room to the other. Four long strands crisscrossed the room, hung from the corners and the middle on little hooks nailed in for just this purpose. A hundred other lines hang from these four long strands, each one carrying ten origami cranes separated by a shiny plastic bead.
My mouth hung open, somewhere between a wide-mouthed gape and a humongous grin. I was still carrying the paper towels and t-shirts and wearing the big purple feather boa. I looked ridiculous. My room looked incredible. My friends looked at me, smiling and laughing and clapping.
“Look what we did,” they said.
“I can see,” I replied when I regained speaking skills.
When I went back to being stupefied, they explained everything.
More than a month beforehand, I had been told by my doctors that I had a sudden growth spurt – but it was not the kind I was hoping for. It was of my cancer cells. They put me on a heavier chemotherapy and I had to stop attending school, finishing my work at home instead. While this was going on, one of my friends at school decided to do something for me. She organized a school-wide creation of 1,000 origami cranes. She taught friends how to fold a single square sheet of paper into a beautiful work of art. These friends taught other friends who taught other friends and so on. Pretty soon students and even teachers were in on this plan, making them during art classes or breaks, even sometimes during class. When some of my friends went on their annual Band Trip, they even made cranes out of ripped-up Busch Gardens maps!
The weekend of the Relay for Life, people willingly gave away their free Saturday to go to school and string these cranes on the fishing line, tying a knot in the bottom and adding a bead, crane, knot, bead, crane, knot, bead, crane, etc. for hours. They even came up with an ingenious way of transporting these creations to my house later on.
But how did they get these hanging in my room without me knowing?
Well, my Mom was in on it, certainly. Even my grandparents knew. Remember how Mom got me to the Relay an hour ahead of time? Turns out that was because my friends were due to show up at my house at that time and hang those cranes. While I was sitting in my high school, staring at nothing, tons of my friends were in my house, nailing hooks and stringing paper birds all over my room.
Can’t say I expected that.
They didn’t expect it to take so long, either. They thought for sure they’d be done in an hour, and then be able to head right to Relay.
They thought wrong.
Just in case you want to know, it takes more than an hour to hang up 1,000 cranes. But my friends were determined to finish it – they had to finish it – before I got home at the end of the night, so they would finish it…even if that meant they had to miss the beginning of Relay.
That’s right. While I was wondering where the rest of my team was and making phone calls, they were all there in my own house, together, finishing their project. Those lame excuses? They were truly lame excuses. Kristen’s family never went out to dinner; Jackie’s mom wasn’t sick; Zandra’s car was perfectly fine sitting in our driveway, where she drove it to hang those cranes! Meghan wasn’t crazy; she was trying to make sure everyone got to the house and took their spots before she got there. Kristen didn’t have to pee and hadn’t developed a sudden phobia of the mostly clean school toilets; she was just trying to get out of there and push me off onto Meghan. They all had a reason for their madness; there was just no way I could have known it!
So why 1,000 cranes, anyway? A very nice plaque that now hangs on my wall explains: “Japanese legend has it that the folder of 1,000 cranes gets a wish. We’ve made 999; the 1,000th one is for you – it’s your wish!”
Right then and there, with everyone staring at me, they taught me to make an origami crane. It now hangs above the doorway to the kitchen, right at the top and in the center.
One thousand paper cranes. There are one thousand paper cranes flying around my room. There are people who love me enough to fold one thousand paper cranes.
How could life be any better?
"If I could take this from you, I would, in a heartbeat. We love you so much," he was telling her.
She was nodding. She kind of always knew, didn't she?
"Cancer," the doctor said.
Her dad was still talking.
She was twelve.
...................................................................
"What do you mean, your parents decided to go to dinner and drag you with them? Kristen, it's Relay for Life! They know about it! They know I'm the team captain and that you're on the team and that you're my best friend and that this means a lot to me! Why would they do that?" I yelled into the phone, pacing back and forth in my high school Commons room. Rain had forced the big cancer fundraiser event indoors this year, but it wasn't stopping the spirits of the people involved. People still had games and activities set up, and team members were dressed up and walking the track to raise money for the American Cancer Society. It was sure to be a great night.
That is, if my team showed up.
This wasn't the first year my friends were on my Relay team. They had all done this event for the past couple of years, and it was always a blast. They always managed to have a good time while honoring those whose lives had been affected by cancer, and by celebrating all the survivors and fighters. It was a giant celebration of life, and it meant so much to me, as I was still fighting the disease, more than 5 years later.
Then why were there only two people from my 10 person team here??
I was getting upset. This wasn’t even the first thing to upset me that day. Earlier, my Mom had driven me to the school – an hour early. Nothing was set up. No one was there except for one organizer, who was just starting to clean the area. Why did Mom drag me there so early? I had other things to do. I had to give a speech that day, and I wouldn’t mind having an extra hour to go over it. But my Mom insisted we stay. So we did – but only because my Mom had the car keys. And what did we do for that hour? We sat. We watched tables being set up. Mom helped. I couldn’t, being a cancer weakling and all. We sat some more after the organizers shooed Mom away. We wasted an entire hour.
But when the hour was up, I had hoped it would get better. My friends were coming!
Little did I know.
I tried calling my friends and teammates, but they all had some crazy excuse. Jackie's mom was sick and she couldn't get a ride there - but when I offered to come get her (after all, there was nothing else for me to do at the moment without a team!), she quickly yelped, "NO! No, no, no, Kristen's going to drive me!" When I pointed out that I had just spoken to Kristen and that Kristen was out at a restaurant somewhere, Jackie replied, "Oh, yeah, when she's done she's coming by and getting me."
Okay.
Zandra said her car broke down. Again with the ride offer, and again I got, "Oh, I'm coming with Jackie." Uhh, Jackie's going with Kristen...later. "Um, yeah, me too!"
Fine.
The others? Excuses at the ready, just as lame.
Whatever.
Later, Kristen, Jackie and Zandra all show up in Kristen's car. Once they got there, Mom stopped by. Mom says something about a red car being in our driveway and blocking my Grandma and Grandpa in, who were there to visit for the weekend.
"Zandra! That sounds like your car! I thought it broke down!" I cried in surprise.
"Oh! Um, yeah, it was starting to act funny right on the highway by your house, so I pulled into the large open space across your house, and your family helped me get it to your driveway so it can stay there for now."
Right.
But someone pulled me by the arm to another group's game, and I was too happy to pay much attention to this weirdness. More people were finally showing up, and this year's event was living up to its predecessors, despite the rain.
After a long time, other teams started packing up and leaving. I realized that it was time to get going, and, on my Mom's suggestion, I invited my friends back to my house to sleepover. Usually the event already is a sleepover, but with the rain, people decided to pack it up instead. My friends were eager to come over, but instead of packing up, they just hung around. What? Why was everyone being so weird?
We had planned that Kristen would drive me home, but I didn't want to go until I knew that everyone was actually coming. Some of these people had never been to my house before and might need directions or something.
"Come on, I have to peeeeeee," Kristen whined to me, pulling on my arm and dragging me towards the exit.
"Kris, we're in our school, go use the bathroom!"
"But I don't like these bathrooms, can't we go to your house?"
"Are you kidding? You use these bathrooms everyday! Look, use the nurse's bathroom, it's a single and it's clean."
"Noooo, your house!"
Suddenly, my friend Meghan came by and pulled me by the arm. Why is everyone doing that to me today?
“Come with me!” Meghan exclaimed, leading me…actually, where was she leading me?
They stopped in the middle of the commons. And stood there.
“Meghan, what the hell????”
Meghan didn’t answer.
People were finally starting to leave to head to my place. And now, apparently, I was not.
“Meghan, we should go, there are people driving to my house right now, and my grandparents are over and probably sleeping, so I should really try to get there first! Plus, Kristen really has to pee and WON’T USE THESE BATHROOMS!” I said with a pointed glare at Kristen, who looked back sheepishly.
But then Meghan grabbed me by the shoulders and had me in a kind of hug-lock so that I couldn’t really escape. As I struggled to get free, Meghan went, “Kristen, go drive to her house, I’ll drive her back!”
Kristen ran out the door.
There were only a few people left lingering in the Commons – including me and Meghan.
“MEGHAN! LET ME GO! We NEED to get back! We’re not even doing anything here! What are you doing??” I yelled.
“Hmmm….oh, fiiiiiiine,” Meghan said slowly as she watched the last of the people in the Commons file out. “Let’s go.”
They headed into Meghan’s big SUV – one of the only cars left in the parking lot – and drove off down the small highway that takes us to my house. This being a highway – albeit a small one – the speed limit is 50 mph. Meghan was driving 35 mph.
“MEGHAN. What part of ‘I need to get there fast’ don’t you understand???” I yelled.
“Oh, I just feel so calm and relaxed, and there’s no one around, we’re fine!” she replied easily.
“Most teenagers go FASTER when there’s no one around, did you know that, Meg? In fact, FASTER would be a good idea right now. You don’t even have to go past the speed limit if you want to, but the speed limit might be a good idea. You’ll have to go FASTER to get up to that though! So how about going FASTER?”
Meghan sang along with the radio.
The normally 5-minute drive took quite a bit longer than that, and every extra minute just about killed me
“Great,” I thought, “I’ve survived cancer for 5 years and now I’m about to be killed by impatience – after Relay for Life. Anyone else see the irony, or is this just chemo brain?”
We finally got there. But, just as I feared, every single car is already parked in front of my house – and the carriage house, where they were going to sleep, is dark. Where is everyone?
Meghan rushed out the car door and ran into the darkness towards the house, leaving me with the job of carrying all of our crap inside. This crap includes paper towels, Relay t-shirts, and a purple boa I won. Lacking 3 hands, I wrapped the purple boa around my neck and grabbed everything else into my arms, then made my way to the still-silent carriage house. On the way, I passed the back entrance to my actual house, where I saw my mom and grandparents standing on the back porch.
“Oh, Mom, I’m so sorry, did everyone wake you guys? I was trying so hard to get everyone here quietly – you woudn’t believe all the crazy stuff that just happened – by the way, have you seen Meghan, I have to strangle her – sorry Grandma and Grandpa – “
“Wait, hon, wait, wait, you didn’t wake us, we just stayed up and watched a movie, it’s fine, then we came out here for some air. Come inside for moment, put that stuff down,” Mom said, gesturing towards the back door.
“But where is everyone?” I started to say, but – wouldn’t you know it – I got taken hold of by the arm and led inside.
We all walked through the back door into the kitchen, and as we stepped through the kitchen towards the middle room, I saw, first, Kristen, standing straight in my line of view. Kristen’s cheeks were flaming red, something they do whenever she’s embarrassed or extremely excited or hiding a secret. As we get closer, I could see more friends standing crowdedly in the tiny room, and there was something that astounded me even more than that: cranes. Paper cranes, origami cranes, everywhere, hanging from the ceiling, big ones, little ones, a huge one sitting on the cabinet, the rest dangling from fishing line hung from one end of the room to the other. Four long strands crisscrossed the room, hung from the corners and the middle on little hooks nailed in for just this purpose. A hundred other lines hang from these four long strands, each one carrying ten origami cranes separated by a shiny plastic bead.
My mouth hung open, somewhere between a wide-mouthed gape and a humongous grin. I was still carrying the paper towels and t-shirts and wearing the big purple feather boa. I looked ridiculous. My room looked incredible. My friends looked at me, smiling and laughing and clapping.
“Look what we did,” they said.
“I can see,” I replied when I regained speaking skills.
When I went back to being stupefied, they explained everything.
More than a month beforehand, I had been told by my doctors that I had a sudden growth spurt – but it was not the kind I was hoping for. It was of my cancer cells. They put me on a heavier chemotherapy and I had to stop attending school, finishing my work at home instead. While this was going on, one of my friends at school decided to do something for me. She organized a school-wide creation of 1,000 origami cranes. She taught friends how to fold a single square sheet of paper into a beautiful work of art. These friends taught other friends who taught other friends and so on. Pretty soon students and even teachers were in on this plan, making them during art classes or breaks, even sometimes during class. When some of my friends went on their annual Band Trip, they even made cranes out of ripped-up Busch Gardens maps!
The weekend of the Relay for Life, people willingly gave away their free Saturday to go to school and string these cranes on the fishing line, tying a knot in the bottom and adding a bead, crane, knot, bead, crane, knot, bead, crane, etc. for hours. They even came up with an ingenious way of transporting these creations to my house later on.
But how did they get these hanging in my room without me knowing?
Well, my Mom was in on it, certainly. Even my grandparents knew. Remember how Mom got me to the Relay an hour ahead of time? Turns out that was because my friends were due to show up at my house at that time and hang those cranes. While I was sitting in my high school, staring at nothing, tons of my friends were in my house, nailing hooks and stringing paper birds all over my room.
Can’t say I expected that.
They didn’t expect it to take so long, either. They thought for sure they’d be done in an hour, and then be able to head right to Relay.
They thought wrong.
Just in case you want to know, it takes more than an hour to hang up 1,000 cranes. But my friends were determined to finish it – they had to finish it – before I got home at the end of the night, so they would finish it…even if that meant they had to miss the beginning of Relay.
That’s right. While I was wondering where the rest of my team was and making phone calls, they were all there in my own house, together, finishing their project. Those lame excuses? They were truly lame excuses. Kristen’s family never went out to dinner; Jackie’s mom wasn’t sick; Zandra’s car was perfectly fine sitting in our driveway, where she drove it to hang those cranes! Meghan wasn’t crazy; she was trying to make sure everyone got to the house and took their spots before she got there. Kristen didn’t have to pee and hadn’t developed a sudden phobia of the mostly clean school toilets; she was just trying to get out of there and push me off onto Meghan. They all had a reason for their madness; there was just no way I could have known it!
So why 1,000 cranes, anyway? A very nice plaque that now hangs on my wall explains: “Japanese legend has it that the folder of 1,000 cranes gets a wish. We’ve made 999; the 1,000th one is for you – it’s your wish!”
Right then and there, with everyone staring at me, they taught me to make an origami crane. It now hangs above the doorway to the kitchen, right at the top and in the center.
One thousand paper cranes. There are one thousand paper cranes flying around my room. There are people who love me enough to fold one thousand paper cranes.
How could life be any better?
What I Hope To Accomplish With This Blog
I hope to post at least once a week, and I want to post both new and old things I've written or have yet to write. There's probably not going to be much of an order to these posts; no chronological timeline for me! I write bits and pieces all the time, somewhat memoir-ish, but they often skip from one year to another, so working chronologically just wouldn't make sense. Plus, I remember certain things better than others - you can blame chemo brain and multiple heavy-duty drugs! I also just like writing based on what I feel right now, and sometimes that corresponds with something that happened four years ago, and other times it corresponds with something that happened yesterday. Sometimes I even like to be somewhat normal and write about my day, or my plans for the future. It's true, I do have normal moments! But I do hope to have a post up soon that will give a rough timeline of everything I've been through - and I'm using the word "everything" very loosely here.
Mostly, the posts will be snippets of things I've experienced, and things I've learned. There are many, many stories, some amusing, some upsetting, and some uplifting. I tell them to my friends all the time, and I finally feel like I really need to write them down. They may not always be happy stories, but they are my stories.
Who Am I?
So, who am I? This is actually a question I think I have the answer to. I’m Hope – I’m me, and I’m pretty happy with that.
I am 19 years old, 4’10” in my favorite (at the moment!) pair of heels, 75 lbs, and currently bald, although there’s a bit of fuzz starting to come back. I guess none of this may be too typical of a normal 19-year-old, but hey, I never claimed to be a normal 19-year-old. I have many of the same interests as any other 19-year-old female, but I also have something else many of those same teenagers lack: cancer.
It started when I was 7. I would complain to my parents about feeling sick, but it wasn’t very frequent yet. Plus, it usually happened at night, and I was notorious for trying to get out of my bedtime! But then it started to become more frequent. I would have bad stomachaches and I threw up a lot. By the time I was 10, I was starting to feel sick almost every day. There were foods I couldn’t stand to eat. I couldn’t gain weight. I was 60 lbs.
I was taken to many doctors and never received any answers. Some said it was all psychological – but I continued to throw up. I even went to psychologists, and they couldn’t find anything wrong with me either. I went to nutritionists and food therapists – but the weight continued to drop.
At age 11, I was in physical pain every single day, and I was very weak. I continued to go to school and see friends – almost all of whom didn’t know anything was wrong because I was very good at hiding it – but I did have to quit two of my favorite activities: soccer and horseback riding. I saw more doctors, who often threatened to admit me to eating disorder clinics because they couldn’t come up with a better reason for my extreme weight loss. They refused to believe that I ate without intentionally throwing up, and they even blamed my parents for not noticing the “real issue”.
Then finally we found a pediatrician who believed us when we said that there was something physically wrong. He agreed to send me off for more extensive medical tests, including a colonoscopy/endoscopy, x-rays, and an ultrasound.
It was the ultrasound that did it. Maybe that’s why I’ve never liked getting ultrasounds, even though they’re supposed to be one of the easier tests. No, actually, that’s probably not it; I definitely don’t like them because I’m the most ticklish person in the world and having that wand rolled over my stomach is torture for me. But maybe they’re even worse because my very first one resulted in the worst news I’ve ever received.
We didn’t get those results immediately. The doctor is given the results first, to go over them. Since then we have learned that, generally speaking, the longer it takes for you to get the results, the worse the news. If it’s bad news, the doctors have to consult with other doctors and specialists to make sure they’re reading it right, and they usually are.
Our pediatrician called us and told us to head to the hospital. He only told us that they found something on the ultrasound and that we should get it checked out at the hospital – but not to expect anything good. We left that night. I didn’t return again for quite a while.
After a biopsy of the mass, we were told it was cancer. My parents were crying while they tried to explain it to me. I understood. I also didn’t cry. There was sadness, and fear, but there were also two things you might not expect: relief, and hope. Relief, because finally there was a name to what I had. It was not an eating disorder; it wasn’t all in my head; it was real. We didn’t yet know what kind of cancer exactly, but cancer was still a name, and things with names can be treated. And the hope – I don’t know where that came from. Where does hope ever come from? I don’t really know if it’s something that’s always there, or if it springs up with the bad. Or maybe, because I AM Hope, it’s something I in particular just can’t escape! But I think there’s more to it than that. In any case, it was there, and I felt like I could keep going. That feeling really comes in handy.
Eventually, we learned it was neuroblastoma. “Neuroblastoma.” What the heck is that?? Even today, I’m not sure I can completely answer that. I do know that it is a cancer of the nerves, not the brain, as you might think from the “neuro-” part. What it meant for me was that there was a very big tumor – the size of a grapefruit – mostly in my abdomen, pressing against many of my organs. There were many small bits of cancer in other parts of my body too: legs, back, neck. I was kind of littered with it.
Since then, I’ve been through many, many, many treatments. I don’t think I could even write them all down. There’s been chemotherapy and experimental treatments and radioactive medicines and oral chemo and more surgeries than I could ever remember. I still have to work to keep up my weight, and it’s not as simple as “eat a donut!” Because of the way the cancer was pressed against so many of my organs, pretty much everything inside me is all screwed up. I literally can’t seem to gain weight. My body doesn’t seem to absorb fat right. I also didn’t go through puberty because of my low weight and the many chemos I have had. That’s why I’m still the same height I was in third grade. I lost a good portion of my hearing from a certain chemo that destroys the hair in your ears that feels vibrations. I will never be very strong and I will always have to work on my stamina and energy. But even with all that, I still feel good. 75 lbs. is better than the 60 lbs. I used to be. I can swallow pills now. I am no longer scared of needles. And I know that I am stronger in spirit and mind than I ever thought possible.
So, who am I? I’m me: 19, short, skinny, bald, and living with cancer, but I am really truly living.
Monday, October 12, 2009
The Beginning
It started with communication.
Or, rather, with my Principles and Theories of Communication class at Marymount Manhattan College. We kept a blog as a running class assignment; almost every week we were required to answer a question or type a response on our blogs, and comment on another student's. This showed me how easy this blogging thing is. I could handle it. It's all good.
Then I started my own blog, free of requirements. I used it only to post poetry or prose I wrote, for friends who wanted to read it. That was all.
Next came online classes. I had to drop out of Marymount and start taking online college courses at Fairleigh Dickinson because of my cancer treatments. I couldn't deal with the normal schedule of a regular college because I had no idea when I would be sick. I get sick often, and I miss too many classes. Plus, I had a new treatment coming up, and I didn't know how I would react to that one. Much safer to try something new - online classes. However, I signed up late, so I was stuck choosing from the leftovers, classes that hadn't yet become full. I wasn't upset though; there were still a bunch of interesting ones. Like this one: Blogging! I signed up immediately.
Then I suddenly just couldn't stop writing. I've always loved writing, and I keep a journal right next to my bed for any late-night inspiration. Usually that's the only time I have inspiration, actually. But suddenly I was on a roll. I wrote in that journal at all times of the day, and when I realized I needed a way to write faster and longer, I switched to my computer, typing out stories in Microsoft Word for Mac.
I posted some of these stories on my Facebook account. I let family and friends read others. Everyone encouraged me to do something. My aunt, a Huffington Post blogger, told me I should start a blog. My online class was telling me I would have to start a blog. My mom supported the same idea.
So here I am now. Blogging. It is an account of my life, my thoughts, and my feelings, as a 19-year-old girl, fighting cancer for 6 years. It is the accumulation of my time and my self. It won't be in order. My life isn't always in order. I may remember things differently than others - I spent a portion of my life suffering from something oncologists like to call "chemo brain"! But these are all true feelings. Maybe you haven't experienced the same events I have, but I'm sure we've felt some of the same feelings and learned some of the same things. I just like to do things differently. ;)
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