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.
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