I started this blog and wrote my book with the aim of trying to help young people going through cancer treatment and living life as survivors to maintain a positive attitude in spite of the many challenges they face.  While I have tried to share many of my own stories as examples of how to actually do that, I thought it might also be helpful to share some examples and resources that also advocate for and demonstrate a positive attitude in the face of cancer.  

So, here are some favorites of mine!

First, StupidCancer has a great blog where young patients and survivors share thoughts and experiences.  A recent posts is one of my favorites of all time since it conveys positivity and acceptance in a genuine, hopeful, and all-around wonderful way.  "Celebrating the Cancer Way" is the name of the post and in it cancer patient Ali Powers writes about how cancer kept her and her friends from celebrating New Year's Eve in the city like any young adult should be able to do - yet Ali writes about this setback in a way that makes it sound like it was  blessing and something that enriched her New Year's Eve rather than something that ruined it.  This perspective is so important and I highly recommend reading her post!

​Second, Cancer Knowledge Network also has a fantastic blog where young patients and survivors can share words of wisdom.  While the types of posts are diverse, as on the StupidCancer blog, there was one recent post that stood out to me because of the positivity it fostered.  The post is called "Top 5 Lessons Learned in 5 Years of Cancer Survivorship" and in it cancer survivor Steve Pake shares his lessons learned in an amazingly positive way.  I definitely encourage you to check out Cancer  Knowledge Network and Steve's post!

​Finally, I recently found a really cool blog by a young cancer survivor named Alexandra Spain.  I read through a few of her posts and I love the positivity and forward-thinking attitude she conveys through them all! The blog is called Battling Roses and Thorns and it's definitely a site I recommend looking at for some great examples of turning the adversity of cancer into opportunities to better yourself and your life!

Happy holidays and happy new year to all! As we start 2016, I am resolving to write more frequently here and work to share more relevant articles and information! To start that resolution off on the right foot, I wanted to share 3 great articles/blog posts with you that cover important questions and topics for teenage/young adult cancer patients and survivors.  So, here we go :)

1.  Dana-Farber Cancer Institute has an awesome blog called Insight, where they regularly post about topics and questions relevant to people living as cancer patients or survivors.  Recently, they made a post about the question "How Long Does Chemotherapy Stay in Your Body?"  I always wondered about this and was interested to read that the length of time during which chemo remains in your body can be variable.  "A variety of factors can influence how long it takes for the drugs to leave your body, including the type of chemotherapy you’ve received, the presence of other medicines in your system, your age, and how well your liver and kidneys are working."  You can read the full post here.

2. Livestrong's We Can Help resource site is a great place to check out for questions related to particular treatment or survivorship issues.  For example, they share a really helpful review of potential body image issues you may encounter during and after treatment, as well as suggestions for ways to improve your body image if it is something you are struggling with.

3. Young Adult Cancer Canada's Community Stories page is wonderfully original site, full of posts from young adult patients, survivors, and caregivers covering a range of topics.  One of my favorite posts there is called "Time to hang up the cape" by cancer survivor Carina Cameron. In it, she discusses the challenge of staying positive for those around you when you yourself are struggling to come to terms with your diagnosis.  She also provides 6 tips for how to hang up the superhero cape you are seemingly forced to wear after diagnosis, and how to find ways to balance your own emotional needs with the emotional needs of those around you.  You can read the full post here!

Finally, if you have not yet seen my book, check out the Amazon link above, where you can look inside the book, check out reviews, and buy the paperback or kindle versions!  You can also follow me on twitter at @CESchilstra for updates about my book or blog :)  That's all for now! Happy New Year and Best Wishes for a healthier, happier 2016!

​I know it has been a while since I’ve posted something original here, and as I have just finished my classes for the semester I figured now would be a good time to do so!  It is also opportune timing because I’ve yet again been dealing with some survivorship issues that I think are important for others to know about.
 
So, to get to the story.  About two years ago, I was hiking with some family in the snow and slipped and fell on some ice (classic clumsy me).  I bruised my right hip but felt fine otherwise.  That being said, about a month or two after that fall, I started having lower back pain that grew into nerve pain that shot down the back side of my right leg.  After going to my primary care doctor, I was prescribed some steroids for anti-inflammatory purposes and referred to physical therapy.  After a few weeks of physical therapy, my therapist told me I should get involved in yoga to work to strengthen my lower back muscles.  Following her instructions, I started going to yoga class at least once a week.  Miraculously, my back pain, and the nerve pain that extended down my legs, stopped completely.  I continued to do yoga regularly for about a year.  Last winter, the nerve pain came back briefly, but I again worked on exercising and stretching, and it went away.  Then, about 3 weeks ago, I was babysitting and sitting on the floor with the toddler I care for.  As I turned to reach something behind me, something happened and I suddenly felt pain return to my back and cause stiffness and nerve pain down my lower extremities.  I got up and fortunately was soon done babysitting.  As I went back to school, I could barely walk and knew something was really wrong.  I took lots of advil and did lots of stretching exercises for the next week and a half.  Nothing helped and I found myself waking up at night from the pain and continuing to have a lot of trouble walking. 
 
Then, I went on Thanksgiving break.  I had my annual physical the second day of break, so I told my doctor about my problem.  He again put me on steroids for 6 days, which did help temporarily with the pain.  He also referred me for an MRI of my back to try and find out what may be causing my pain.  About 3 days ago the results of that MRI came back.  It turns out I have a slightly herniated disc and a bone spur in my lower back, both of which are pressing on a nerve.  I was told I should go have a consultation with a spinal surgeon.  I proceeded to google what “herniated disc” and “lumbar bone spur” meant and what typically led to these problems.
 
It was quite shocking to find out both herniated discs and lumbar bone spurs are typically found in people over 50 who have osteoarthritis.  That basically means my lower back is about 29 years or more older than the rest of me.  This is particularly evident in the presence of the bone spur, which is a bony growth on my spine.  According to spine-health.com, “osteophytes are a radiographic marker of spinal degeneration (aging), which means that they show up on X-rays or MRI scans and are by and large a normal finding as we age.” So, my spine is apparently degenerating but I’m only 21… So, that brings me back to how this relates to survivorship.
 
As I’ve mentioned before, leukemia treatment involves spinal taps in which they inject intrathecal chemotherapy.  In my treatment as a toddler, I had about 19 spinal taps.  In my treatment as a teenager, I had about the same number.  That means there has been a lot of chemotherapy going into my spine – and from my 28 day spinal headache during my relapse treatment, it is likely some of that chemotherapy leaked out into the bones/tissues of my lower back.  While I make the disclaimer that I have no idea if this is actually a possible cause, I believe it is related at least in some way.  The MRI report from last week showed significant degradation of the health of the two discs in between the bottom few vertebrae of my back.  So, something definitely happened there. 
 
I thought I had encountered enough with the cognitive challenges I confronted at the beginning of my college experience, and I definitely was not expecting physical complications more than 6 years after my treatment ended.  I thought by this point if I didn’t have any problems I would be ok.  Clearly that is not the case and I don’t think I realized that my treatments may have impacted the internal structures of my body in a way that I can’t see and that might manifest in various new problems, like this spine problem, as I get older. 
 
Therefore, I wanted to write a PSA to survivors to remind you to get regular physical exams through a primary care provider, have an annual visit with a long-term survivorship specialist, and most importantly, to listen to your body.  I could have attributed my pain to a pulled muscle or something and chosen not to do anything about it.  However, I went to my physical appointment and requested my doctor refer me for an MRI (he was only going to give me the steroids but I knew I needed to find out what was really going on and the MRI was the way to accomplish that).  And that brings me to my final point – just as you should during your treatment, remain informed and active in your care as a survivor.   By doing all these things, you can be more proactive in ensuring your long-term wellbeing. 

This past week, I had the opportunity to write a blog post about my experiences with cancer survivorship issues for Cancer Knowledge Network, an awesome organization that works to keep patients and families as informed and supported as possible.  You can find my post here if you would like to read it!  It's especially relevant to young survivors who are navigating the challenges caused by the long-term impact of cancer treatment!

Dear readers,

I am incredibly excited to announce that Riding the Cancer Coaster: Survival Guide for Teens and Young Adults is finally here!  It has been an unbelievable journey getting to this point, and I am so excited!  This blog was my step towards my dream of writing a book, and it feels so unreal now that the book is actually complete!

For all of the teenagers and young adults out there going through treatment or living life as a survivor, I hope this book can provide a tool to navigate the twists and turns of this crazy cancer coaster life we lead.

If you would like, you can purchase the book HERE.  Please help me by posting a review of the book, since the more reviews it gets, the higher it sorts in Amazon's search listings!  You can also get to the book by clicking on "The Book" tab above!  

This past weekend proved to be an eventful one, so I am excited to share some updates here!  I not only managed to take the GRE (the exam required for applications to PhD programs), but I also SUBMITTED MY MANUSCRIPT TO AMAZON! 

What does this mean? It means that Amazon has approved my document as printable and they have allowed me to order a proof of the book, which is basically a test copy.  I received an email that the proof was shipped today, and it should arrive here within the coming week!  When it arrives, I will review it and see if it requires any last-minute edits.  If it does require corrections, I can correct the manuscript and complete the same submission/review process again.  If, however, it does not require any edits, I can make it available for purchase on amazon.com!

Therefore, the book will most definitely be available by November!  I will share the link and related information here as soon as it is all finalized!! So, keep checking back! Until then, have a good weekend!

This past week has been an awesomely eventful one.  I had the privilege to speak at an event for a student organization here at Duke, called Harmonies for Health.  My presentation was providing a patient’s perspective on the importance of empathy in provision of healthcare.  With so many pre-health students at Duke, it is definitely an important topic that does not receive enough attention.  For me, it was really special because I have not yet had the opportunity to speak at Duke, and it has been a while since my last patient ambassador speech!

I was also grateful that Harmonies for Health let me talk a little about my book plans!  Speaking of which, I am excited to say that the Riding the Cancer Coaster manuscript is complete and I am just putting the finishing touches on the cover design and other aesthetic things this week!  So, I am hoping to have the book available on Amazon by the start of November!

In the interim, I want to keep sharing awesome articles and information I find related to life as a cancer patient or survivor.  Today, I read an article in the Huffington Post called “Learning not to be a cancer-surviving control freak,” by two-time colon cancer survivor Danielle Ripley-Burgess. 

I loved the article both because it was incredibly moving and because I related to it on almost every level.  My favorite passage from it was the section on reality checkups:

I had this very thing happen to me a couple of weeks ago.  I was finishing up my book manuscript, I was starting my independent study on the efficacy of group support for adolescents with cancer, and I was feeling like I was off to a good start as I began my senior year.  I was working on my book and my independent study – which encompass my cause, as Ripley-Burgess refers to it – and they continue to help me heal my internal wounds from my own cancer experiences.  I had barred my doors and was full of positivity. 

Then, I heard my good friend had relapsed for the fourth time.  Having experienced my own relapse eight years ago, I was overcome once again by the prospect of having no control over my future.  As suddenly as I had picked up my reigns of control, they once again fell out of my hands.  I consistently find myself in this cycle of gain and loss of control.
 
I also ironically have trouble following my own advice because as I continued to read through Ripley-Burgess’s article I found a statement all too familiar to me and so similar to what I have written in this blog so many times.  Ripley-Burgess writes: “It’s not in my power to stop polyps from forming or my genes from mutating.  I can’t control what scares or realities will or will not come my way, now or in the future.  But I can control what’s around me that gets me through.”

So, as I have emphasized in the past, and as Ripley-Burgess so articulately and movingly points out in her article, surround yourself with people and things that will get you through and don’t focus so much on the element of control.  I thought I had learned that lesson, but I clearly have not and I am glad to have awesome survivors out there who can write articles like this one to share such reminders.  

​We may not be able to control how cancer impacts our present or our future, but we can ensure that we are surrounded by meaningful experiences and uplifting people.

My website homepage shows one of my favorite quotes: "Become a possibilitarian.  No matter how dark things are, or actually are, raise your sights and see possibilities - always see them for they are always there." - Norman Vincent Peale.

I have come to know many amazing cancer survivors since my diagnosis 6 years ago.  However, one of them stands out above the rest: Karen Shollenberger.  She has beaten cancer not once, not twice, but three times.  No matter how difficult it got, she constantly showed this sense of hope and positivity that simply amazed me.  She is awesome and I am so grateful to have her as a friend.  Yesterday, however, I found out this amazing young woman has yet again relapsed.  

I don't know how I would have handled news like that, if I were her.  Yet, once again, she has displayed this incredible sense of possibilitarianism.  She may not know what the next steps are for her - or even if there are next steps - but she continues to hold her head high and sets her sights on possibilities.  


When I heard her news yesterday, I was mad, sad, angry, frustrated, you name it.  I continue to be amazed at the new and terrible ways in which cancer touches my life, day after day.  I may be a survivor, and I may be physically healthy, but this roller coaster of cancer seems to be endless.  No matter how far away from my own experience I get, I continue to find myself on another downhill drop - whether that be from my own struggles with late-effects or with emotional challenges like hearing the news I heard yesterday.  Cancer simply sucks.

So, I write this post in an effort to help pull myself together and sit up straight again in my roller coaster cart.  I sit up straight and try and hold my head high, as Karen has so gracefully done, so that I can see possibilities ahead.  While I believe I see possibilities ahead for me, I hold on tight to those around me as I hope and pray those possibilities are there for Karen too.  If you find yourself in the same position as Karen, I encourage you to check out Karen's blog at http://theworstbestthing.weebly.com/blog, where she shares her journey and awesome outlook.  Let's all be #Karenstrong.

If you are looking for some inspiration this week, check out the video below :)  I came across this awesome little guy while watching some clips from Ellen, one of my favorite shows!  Her guest was a special one for sure, and has certainly showed me the positive power of dancing!