Alex's Lemonade Cancer Symposium

This past Saturday, I attended Alex's Lemonade Stand Foundation's 3rd Annual Cancer Symposium. This was my second time going to this event, and it's grown tremendously already. This event is made up of a series of informative talks and discussions about childhood cancer. It is held at a hotel, and is filled with different sessions spanning across the whole day. You can pick and choose which to go to, and at the end of the night, they also hold a dinner and dance for the attendees - all free of charge.
Last year my mom and I went mostly to see what it was about, and because of my personal tie to Alex's Lemonade Stand. We enjoyed it, but found that it didn't have a lot of sessions that appealed to me or others in my situation; namely, that of teens/young adults with cancer, or with long-term patients. Most sessions were aimed at very young patients, or newly diagnosed patients, or survivors. I don't fall into any of those categories. There were two sessions we attended last year that we enjoyed - one was an overall look at childhood cancer (my mom and I learned a lot from this!), while the other was a fundraising talk. They were done well, but it was a shame that, out of a full day of sessions, these were the only two that I felt had any relevance to me.
After that first event, I was talking with one of the organizers. She asked if my mom and I had any feedback about it, so we told her that, while we were happy with the ones we went to, we felt like there could have been much more. We ended up talking with this organizer for over an hour, as she was very interested in hearing what kinds of events and discussions we would like to see. So, we were very excited when we got the schedule for this year's Symposium and saw that it included a ton of the suggestions we had made! There was a whole separate schedule for adolescents/young adult patients, known as AYA patients. There were also round-table discussions for just the parents, and just the AYA group. There were crafts and art therapy. There were little kid sessions. There was pet therapy. There was a session on alternative pain therapies such as massage. It was fantastic.
We got there early enough to catch the end of their breakfast, and then we listened to the inspirational speaker. She was 25 and had been diagnosed at 19, and was now involved with a Childhood Cancer committee. When she was done, my mom and I went off to our separate parent/AYA sessions and didn't see each other again until lunch. My first two sessions were given by the same woman, someone from Virginia who had worked as a teacher for a long time until she got involved with helping AYAs with cancer as an Educational Consultant at VCU Medical Center. Her sessions were Coping with Cancer and Transition: High School to College and Beyond. At first, it was just me and one other 15-year-old girl in this session. I was a little worried it would be awkward, but we ended up being able to talk very easily and openly - perhaps because it was so small. It did feel good to talk to another patient, even though we had completely different experiences and I didn't necessarily feel like I needed these particular sessions much; I somehow never had a hard time coping, and I had already gone through the transition of middle school to homecare to high school to college. Of course, in my case, that could have gone better, but I had done all I could and all that anyone could do, and just found that, at least for now, it was not the right option for me. But I picked up a few good tips, and I felt like I was at least a little bit of a help to the other girl. I hope so. Later on, a few other AYA patients joined us, and throughout the later sessions, there were maybe 7 of us who would go along to them all. Sometimes one patient might choose to skip a session, but by the end of the day, I felt like I knew all of them pretty well, and that made the day worth it for sure. We had one session that was just a round-table discussion, where we felt free to talk about anything. It was really interesting. The inspirational speaker from earlier on was there, and I found we had a lot of the same views on things now, even though we, too, had completely different experiences. Another girl was the sibling of a young boy with cancer, and I really enjoyed her take on things, since I'm not always sure how my brothers have felt. There was one 13 year old boy in our group, and I was worried he'd be uncomfortable talking with a group of older girls, but he surprised me by jumping right into our conversations and participating in everything. It just showed me how much of an effect cancer has had on us all in terms of our comfort levels and our confidence. Not once did I feel uncomfortable sharing anything with any of them, nor did I ever get the feeling that any of them felt that way. It was a great experience. Even though I've been doing this for 8 years, I really haven't had many opportunities to talk with others close to my age, so this was really exciting to me. I've exchanged emails and contact info with a few of the others, and I plan on writing them again.
I'm amazed at how much Alex's Lemonade Stand did to put this event together, and so much was added to it this year that wasn't there last year. I'm excited to see what they'll put together for the next Symposium!

Thoughts After Another MIBG Scan

This past Tuesday, I went back to CHOP for Part 1 of my usual MIBG scan. These scans occur every 8 weeks as check-ups to ensure that my cancer is not growing, and to see if my chemo is having an even better response by getting rid of the little bit of cancer I still have. For about a year now, they've been coming back "great", to use the exact word of my doctor. They actually come back "negative", meaning they do not see active tumors anymore. This is definitely great news! But it does not mean I am in remission. I do still have tiny spots of cancer throughout my body; my doctor always calls this "smut" - I don't think that's a technical term. ;) However, these spots are not showing up as active, or malignant. Of course, there's always the possibility that they could become malignant, which is why I'm still pursuing so many different treatment options. We want to make sure that I'm still fighting against it, instead of laying low and inviting it to come back and invade harder than before.

If I have to still have cancer, this is not a bad scenario. I can keep fighting but also heal a bit and continue to get stronger. Taking trial chemos means that there's always the possibility that something will work really well and completely get rid of everything; but even if that doesn't happen, which is still unlikely, I have a good chance of keeping things stable for a while. This is how it's been for over a year now, and it keeps getting better. I'm happy with that.

I got the results back for this most recent scan on Wednesday, and once again, they're "great" and coming back "negative". My doctor made sure I was doing well with this current chemo, made me another appointment for the same kind of scan in another 8 weeks, and sent me on my way. This is pretty much the way of things now. For a cancer patient, I have surprisingly little interaction with the hospital right now - and as much as I dearly love the people there, I'm terribly happy about it. Sure, it would be even nicer if I didn't have to make that appointment in 8 weeks, but it's so far away from how I started this cancer journey. Every step away is a good, strong step. And one day, the scan is going to come back even better than great, and I will take my last step out of that hospital.

8 Years, and Doing What You Have To Do

It's a bit of a startling fact to realize that I've now been undergoing treatment as a cancer patient for more than 8 years. I was first diagnosed with neuroblastoma on May 1, 2003, and today it is June 9, 2011. That's almost half my life. It's the time a student goes through college and med school; no one can argue that I have not gotten quite the education out of this! In fact, I've been at CHOP for longer than some of my nurses. Almost a scary thought.
But the thing about living my life like this is that this is my life. This is what I know, this is what I've dealt with for a long time, this is how I live. Is this how I would choose to live had I been given the choice? No, I really can't picture that being the case. But is this how I would choose to live had I been given this exact life over again? Yes, because I have learned to adapt and turn this into my own brand of normal. I don't know anything else; I have never experienced another life that I can compare this one to. That's why I can deal with things the way I do: just by living this life and taking the necessary steps to ensure that I can keep on living it.
That's what it's all about for me. Doing what I have to do. I cannot imagine that if anyone else was in my position, they'd do it any differently than I have. At a young age, I was given the choice of obeying my doctor and my parents, or making them force me to obey them, or suffer by not getting help for the disease that was slowly taking over. Really, all three of those options would have been painful! So it seemed like the best choice was to go with the one that made it as painless as possible: obeying my doctor and my parents as they told me to try this test and get that checked out. When I was finally diagnosed, it just made sense to keep doing what they told me, because they still knew what was best. Every single one of my reactions to anything that's ever happened to me is the result of me thinking that it just made sense. For me, I do what I have to do to continue my life, in every sense of the word.

Boring = AWESOME

Hey, world. I'm still here!
It's coming up to almost a year since I've posted here. Gives me a good chance to reflect for a bit. So many changes, so much the same.

The major change: I've finally stopped taking the Millenium chemo that was causing me so much trouble. It was just becoming too much to deal with, with not enough payout. Plus, I had other options; if there were no other options, I probably would have kept sucking it up and taking it! Thank God for experimental medications, though; they keep coming out and keep saving my mind right along with my life. I'm now taking another trial medication of 3 pills, with one that has a name you'll actually be able to recognize, but probably not in this context! That one, which I take twice a day, is Celebrex - yes, that Celebrex, the arthritis medicine you see on TV commercials and magazine pages. In the Weird World of Science, Celebrex somehow helps both tight joints AND cancer genes. Go figure.

The other pill that I take once a day is Cyclophosphomide, and no, I do not expect you to know that one. Try saying it, though, it's fun. Cy-clo-phos-pho-mide. If you say it loud enough, you'll always sound precocious! Don't have much to say about that one. It's a small, round, white pill.
I take the Cyclo pill at noon (my general waking-up-in-the-morning time - I don't think that has anything to do with cancer, I think that's just me and my nocturnalism), one of the Celebrex pills two hours later at 2 pm, and the last Celebrex pill ten hours later, at midnight. I could have started this schedule at any time; for instance, I could have taken the Cyclo at 8 am, and the Celebrex at 10 am and 8 pm if I wanted, but I don't wake up at 8 am, and I'm still wide awake at midnight. It works for me.

To be honest, this entire chemo regimen is pretty boring. WHICH MAKES IT MY MOST FAVORITE CHEMO EVER. Never, ever, ever, do I take boring for granted anymore. It means there is nothing to complain about at all, and somehow, I am now taking a chemo that has left me with no complaints. NO COMPLAINTS. ABOUT CHEMO. PLEASE FREAK OUT WITH ME HERE. This chemotherapy has had no bad side effects. I don't get nauseous, I don't get weird pains or sores anywhere, I don't have any kind of blood/platelet loss, I don't even lose my hair; in fact, it's growing back in again. People have been telling me that I look healthier than they can remember ever seeing me, at least in a very long time. It's crazy. I can't believe I can say that I'm on a chemo and looking and feeling healthy. I mean, what is this?? This is 2011. This is good.