Finally, within the last two weeks, I have seen the kind of attention paid towards adolescents and young adults with cancer that I have wished for ever since finishing my treatment.  No, I'm not talking about The Fault in Our Stars (albeit a good story and worth all the attention it has gotten).

I'm talking about real-world stories and strides; fact and not fiction. 

First, there is this awesome article:
http://www.theatlantic.com/health/archive/2014/02/plight-of-a-young-cancer-survivor/283710/.  


THE PLIGHT OF YOUNG CANCER SURVIVORS.  That’s like an oxymoron isn’t it? To put plight and survivor in one sentence?  They seem like complete contradictions of each other.  Sadly, as the article describes, it is a harsh truth.

What I find the most poignant in this article are the concise patient narratives that describe the major challenges faced by adolescents and young adults (also known as AYA's) after they have completed their treatment.  Ironically, they are all issues I have written about since beginning this blog: fear of recurrence, post-traumatic stress disorder, fertility challenges, the importance of finding cancer buddies, the difficulties that come with missing school, and a host of other things.  Maybe I was on the right track after all!  I think so many people underestimate the potential lifelong impact of treatment.

But, instead of using this post for advice, as I usually do, I’m just leaving this article here as a shining example of the fact there is a huge population of AYA’s out there who are dealing with the same issues you and I face each day.  I always like to know I'm not the only one.  Maybe one day this kind of article will not be necessary, because there will be adequate psychosocial and medical support for the unique needs of adolescents and young adults.

That leads me to my next exciting find, the one that made me do a little dance in my apartment and almost cry....

Here is the article: http://www.cbsnews.com/news/program-to-help-forgotten-teen-cancer-patients/

When I first saw the title in my Facebook news feed, I did a double-take.  I honestly wondered if it was real.  It was exactly what I was waiting to see: an entire clinic dedicated to the medical and psychosocial needs of adolescents and young adults with cancer. 

I have always been a proponent of increased attention to the AYA population because of the unique psychosocial issues they face.  That is, of course, why I started this blog.

However, I never realized they were actually a medically high risk population too.  According to the article, “Since 1975, cancer survival rates for children 14 and under have increased by 25 percent. Adults over 40 have seen a nearly 20 percent gain over the same time period. Yet, survival rates among 20 to 39 year olds only increased by about 13 percent. Cancer patients ages 15 to 19 had survival rates increase by about 17 percent.”  These are major differences, depressing differences.  This clinic is, therefore, UNBELIEVABLY AWESOME because it is tackling two major obstacles all at once.  It is effectively combining the science of treatment advances with the art of supportive care, in ways that have the potential to revolutionize cancer treatment for this vulnerable population.

To learn more about the amazing work happening at UCLA and for awesome AYA resources, visit their website here:  http://www.uclahealth.org/main.cfm?id=2213 

I feel so much hope knowing that a major medical institution has made such a movement towards improving the quality and quantity of life for adolescents and young adults diagnosed with cancer.  If and when I get myself through medical school, I could only hope to work in such a clinic.  Maybe I'll be lucky and every major hospital in this country will have an AYA clinic by then.  After all, I'm giving them a head start because it will be at least 5 years until I'm anywhere close to that :)

I participate in an email thread with other cancer survivors through a scholarship program run by the National Children’s Cancer Society and one of the most recent email exchanges was about something so important I wanted to share it here:  So many young adult survivors get lost in transition after treatment.  Since I have yet to write about this major issue, this is my experience with follow-up care…

I feel lucky to have had great guidance in terms of late effects.  I am part of the survivorship follow-up program at Johns Hopkins, so see my doctor there once a year.  She follows my academic performance, physical abilities, and more.  

This was immensely helpful during my first semester of freshman year (last year), when I found myself really struggling to finish my exams within the given time.  I had never had any trouble academically, so didn’t really think about the fact that I could eventually have issues from the chemo and radiation I received. However, when I went to my survivorship appointment that winter, my doctor told me that it is quite common for survivors of many pediatric cancers to have cognitive trouble.  Typically, issues arise in either ability to process information or with executive functioning skills (i.e. planning ahead and time management).  She said it definitely seemed that I was having trouble processing information, so she helped me get in touch with Duke’s Office of Student Disabilities.  Coming to Duke, I never even knew such a place existed, so it was very helpful to learn about that!  Through that, I was able to get an accommodation for extra time on tests, and it has been extremely helpful!  For those of you who, like me, find yourself in a bit of a chemo brain kind of fog once in a while, this is a really useful accommodation!

The doctors working in these survivorship programs are also very familiar with all the current survivorship research.  This was useful to me when I was struggling to get back to a healthy weight after gaining a great deal from being on high-dose steroids during my treatment.  My survivorship doctor was able to tell me about recent research that was showing Leukemia survivors can often have decreased metabolic function, so can have a harder time maintaining a healthy weight.  Any issues like this that you find important can be better understood through such follow-up care.

For other young adult survivors, I strongly recommend becoming part of a survivorship program and to have such follow-up visits.  I have found it so useful, even just to know, year after year, that you don’t have any significant problems. 

Many major hospitals have long-term follow up services in their oncology clinics.  You can also find some useful information about follow-up care after cancer on the NIH’s website at http://www.cancer.gov/cancertopics/factsheet/Therapy/followup

As spring semester begins, and I leave home again, one thought has popped into my mind: how guilty I feel about leaving my little brother at home.  I think back to when I was going through treatment and how bad I felt about leaving him for days to go to the hospital.  Although I did not show it and did not think about it too much, I know I felt guilty for not being there for him, for having to be helped by him, when I should have been there to help him through his late elementary school and early middle school years.  Siblings are so important and yet so lost in the whole cancer treatment process.  

I don’t know why it has taken me so long to make a post about siblings, knowing how important they are and how they play a role in our lives.

I know I wanted so much to hide my brother from the depressing hospital atmosphere, from the scary trips to the ER for fevers, from the prospect of loss.  But I was powerless.  Life had to go on whether I was happy about it or not, whether he was ready to handle it or not.  And honestly, I think I found myself more saddened and angry about the impact my treatment was having on his life than the impact it was having on my own.  

However, now that I really think about it all, and see the amazing, mature young man he has become, I try to convince myself that maybe the whole experience was not as damaging to him as I thought.  Maybe, as it was for me, cancer became a chance for him to turn adversity into opportunity.  His Emergency Medical Technician (EMT) training and interest in emergency medicine have become his passion, and I am so proud of how far he has come.

I often wonder how other patients feel, especially if, for example, his/her sibling donates his/her bone marrow or takes part in some other serious procedure.  I can see how cancer can easily tie siblings together in an incredibly strong bond, or break them apart.  Thankfully, the former was the case for me and my brother and I are very close.

If you are just beginning this roller coaster ride, I suggest this: do not worry for your siblings, do not spend your increasingly more precious emotional energy on worry.  Rather, act positively by letting them know you care about them.  Let them know that, despite the 24/7 attention you require, they are still loved and valued by you and your family.  Let them know they are not forgotten.  As much as we would all like things to be different, cancer is a family disease and impacts everyone involved.  

Joking about cancer with your siblings and answering questions they may have is a great way to keep them involved and relaxed.  I don’t think I did that as much as I should have.  Reflecting on it now, I think that can help them be less worried about you.  I know in my own case, my brother never showed he was worried about me, because he didn’t want me to worry about him, but his worries were expressed much more in the year or two after I finished treatment.  His most notable statement was, “I felt like the only child of divorced parents.”  So, I know it affected him even though I failed to see it during the fact.

To further help your siblings and your family as a whole, try to make jokes about everything you are going through.  My dad, with his ever—present sense of humor, joked about everything from my my bald head to my many medicines.   The silliness we incorporated into everything I was going through, always lightened everyone’s outlook.  Additionally, just chilling with your siblings or playing a game with them can let them know they matter.  Siblings bonded together in friendship and mutual support makes for a much happier family and stronger support system.

While I realize my goal with this blog is to focus on the emotional and social issues of teenage cancer treatment, I did want to make at least one post about the physical issues.  Recently, a good friend of mine was diagnosed with a leukemia relapse, and a late one at that, just as I had been.  When I found out, I immediately wanted to help her and decided that the best way to do that would be to come up with a list, a list of the 20 most important things to consider and keep in mind when first diagnosed.  Since I think it might be helpful to others, I am sharing it here!

So, here it goes!

1. If you don't agree with what your doctors are deciding, or if you have concerns about something, TELL THEM AND DON’T BE AFRAID TO PUSH BACK.  You know yourself and your body so much better than they do, and what works for others may not work for you.  Don't worry about making them do things differently than they otherwise would.  
2. If you are struggling with nausea, ask your doctor about Emend.  It is a medicine only approved for adults yet, but if you are adult size it is safe.  It saved me so many days in the hospital because it enabled me to eat during my chemo stays, so I did not lose intense amounts of weight as I did in the first months of my treatment.  It can be used with Zofran, Ativan, etc. if necessary. The entire combination was necessary for me sometimes!
3. Make sure you talk with your doctors about fertility.  If you don’t feel they are guiding you in the right direction, ask to see a fertility specialist. 
4. Drink at least one bottle of water before going in for chemo to ensure that your properly hydrated!  Many chemos require that you be pre-hydrated since they are unusually toxic and your kidneys will need extra fluids to help flush them out safely.  It has been my personal experience that hydrating yourself  will speed up the process quite a bit because the nurses have no problem making you wait to get chemo until they have deemed you hydrated enough!  So, you’ll get home sooner if you expedite that process!
5. Be mindful of allergic reactions to chemo or blood products.  I experienced anaphylactic shock multiple times over the course of my treatment, from platelets and from two types of drugs, because my body had developed an intolerance to them.  These reactions can be scary, so just be aware that they are possible so you aren’t entirely terrified if they do happen.
6. Be wary of spinal taps.  I had one done so badly that I ended up with a terrible spinal headache for over thirty days. The pain became so debilitating that I could not stand or even sit up straight without vomiting and feeling excruciating pain in the front of my head.  If you de get a spinal headache, just make sure you let your doctor know.  If you feel it has been more than a week since it began, ask your doctors about an epidural blood patch, a procedure that instantaneously closes whatever hole was allowing spinal fluid to leak and takes away all the pain.
7. Keep careful track of your meds. I had something dosed wrong once, because no checking system is perfect.  More importantly, it can be easy to forget what meds you need to take, since there are usually so many and they are all taken at different times or different days.  
8. This one’s a little weird but I wanted to mention it anyway.  With some of the drugs I got, I ended up with a lot of mucus building up in my mouth and throat, which made the nausea worse.  If you find yourself with that kind of strange side effect, don’t worry!  Let your nurse know and she can get you a suction tube to keep in your mouth.  
9. Get a TV show on DVD or something you can bring to the hospital to watch.  I brought “Friends”, and it is still one of my favorites!  There is no doubt that you are going to feel really bad sometimes, and lying there will be one of the only things you can do.  In those cases, it's great to have something funny to distract you!
10. Eat pop tarts when having trouble eating!! They are dry so do not upset your stomach, but are yummy!  Saltine crackers and peanut butter is good too!
11. Eat whatever, even if it is not necessarily healthy food, whenever you can during these first months because it is going to be difficult to keep up your weight when not eating much during chemo.
12. Your hair will probably come in and out several times!  You can see from photos on this blog that my hair definitely did weird things!
13. Get lots of cozy hats or scarves.  It is nice to be bald in the summer, but come fall and winter, it’s amazing how much heat is lost out of the top of your head when there is no hair there for insulation!
14. Go outside when you can, the fresh air can be rejuvenating!  Just be careful of mowed grass or dead leaves!
15. If you are getting steroids as part of your treatment, be prepared to look like a chipmunk :)  They make you insatiably hungry and thirsty.  I ate half of a medium pizza when I was on steroids!  Needless to say, it made me gain weight too.  The most of it is from water weight though, because the steroids cause you to retain more water than normal (hence the swelling of your face).  Just roll with it, and try to be aware that you may not actually be hungry for that entire half pizza, your body may just be fooling you!
16. Find a hobby, you have to do something with your time!  I did crafts and painting!
17. If you get constipated from Vincristine or other drugs, eat apricots.  I’m serious!  I was prescribed all kinds of anti-constipation pills at one point or another, but the only thing that ever really helped was eating apricots!  They are much more tasty than pills too!
18. Keep a journal.  You can include what your emotions and reactions to the different stages of your treatment were, but you can also just record what happened.  I kept journals during my treatment, and I am so glad I did because now I can look back at them and remember exactly how I felt!
19. Spend time with your family, whether that means hugging your brother, sprawling out on the couch next to your dad, laying on the floor and snuggling with your pets, or curling up and watching a movie with your mom!
20. Read more of my blog posts for more information!