1. Evaluate the problem.
2. Gather information.
3. Break problem into parts.
4. Identify solutions.
5. Select best solution.
6. Take action.
7. Examine results.
8. Test and review.

Let's walk through this process:

• Instead of “evaluate the problem,” I prefer using the words “define the problem,” since I feel it is more clear. So, step one is to define what your problem is. Let’s say, for example, that my problem is that I want to speak up more when I am inpatient (staying overnight in the hospital) and the doctors come into my room on their morning rounds.

 

• To begin to tackle the problem, start by gathering information. This is where those information-seeking skills come into play. Going back to my example, I would gather information about what doctors I see while I am inpatient and what aspects of my health they are responsible for. I might also brainstorm reasons why I feel I am having trouble communicating with them. When gathering information, I really like to write things down so I can keep my thoughts organized. But, if you prefer other strategies, like talking through things with a friend or family member, you can choose whatever strategy you like. Keep in mind that gathering questions can be part of gathering information. You do not need to have answers at this stage. For example, in gathering information on why I feel I am having trouble communicating with the inpatient doctors, I might come up with questions like “why do they make me feel nervous?” or “why do I feel different about them relative to the doctor I see outpatient”? This step is meant to just flesh out what you know and what you do not know about your problem.

 

• Now that I have gathered information about my problem, I can start breaking it down. This is a key step I think because, personally, I find that feeling overwhelmed or not knowing where to start can be the biggest barrier to being able to work through a problem. While we have already been breaking things down to some extent, this step really means breaking down the problem you defined. So, going back to my example of of wanting to speak up more to the doctors I see when I am inpatient, I can use the information I gathered to break my problem into parts.

​                 Part 1: Who are the doctors I see when I am inpatient?                 
                 Part 2: What parts of my health are those inpatient doctors responsible for?
                 Part 3: Why am I uncomfortable communicating with the doctors I see                                  when I am inpatient?

• Let's start thinking about solutions.

​                 ​Part 1: Who are the doctors I see when I am inpatient?

​                 If I don not know the answer to this, I can ask those doctors directly, I can                    ask my nurse, or I can ask my parent/guardian. I can also do some research                  online to better understand what doctors come on inpatient rounds and                        what roles they play in caring for patients. From asking people or from                        researching online, I can learn that the doctors I see when I am inpatient                      possess a range of skills. I likely will be visited by one attending oncologist,                  who is in charge of caring for all the patients on the inpatient floor. He/she                  will possibly bring with him/her an oncology fellow (a doctor who is                          specializing in oncology and training to become an attending doctor), a                      few residents (doctors in training - below the fellow in the doctor                                hierarchy), and maybe also some medical students (students who are                          studying to become doctors).


                 ​​Part 2: What parts of my health are those inpatient doctors responsible for?

                 Again, I can ask people around me about this, or I can take to the internet.                  In asking around or doing research online, I would learn that the attending                  doctor is in charge of managing all aspects of my cancer care while I am                    inpatient. He/she is therefore responsible for all aspects of my health while I                  am under his/her care. This means that I can ask this doctor any questions,                  or bring up any concerns - whether they are directly related to my                            treatment or not. The fellow, residents, or medical students that the                              attending may bring along on rounds could also answer questions I have,                    but may be less knowledgeable about the details of my case, and may                        have less experience, so I should probably direct my questions or concerns                    to the attending if I have the opportunity.

                 Part 3: Why am I uncomfortable communicating with the doctors I see                        when I am inpatient?

                 This is one I can just think through. I seem to feel uncomfortable                                  communicating with these doctors for a few different reasons. First, when                    they come into my hospital room, I have trouble understanding who they                    all are and what their roles are. Second, it is difficult to tell who to ask                        when I have questions. Third, I feel like they are authority figures and                        that if they make decisions about my care, they know what is best and I                    do not need to question it.

• Select the best solution(s). In this example, there isn’t necessarily one “best” solution, so we can also rephrase this step to say select the “best solutions.” From the solutions I previously outlined, I defined who the inpatient doctors are, what aspects of my health they are responsible for, and why I was uncomfortable around them. Now that I have those answers, I can conclude that I don’t need to view them as authority figures because all but one of the doctors that come in are in training, so they are definitely not authority figures. Plus, the attending doctor I see when I am inpatient is responsible for managing my health, but it is MY health, so I can ask any questions or present any concerns to that doctor.

• Take action. Next time I am inpatient and the doctors come in on their rounds, I will better understand their roles and I will be able to acknowledge I have a right to ask any questions or present any concerns. With this new understanding, I will be able to ask questions or present concerns, thereby taking greater ownership of my health.

• Examine the results. If I tried asking questions or bringing up concerns, how did the doctors respond? How did I feel taking ownership in this new way?

 

• Test and review. If I continue trying to communicate more with these doctors while inpatient, and I feel more and more comfortable doing so, I can tell my problem-solving process has worked. If I do not feel more comfortable doing so, maybe there are more parts to this problem that I need to look into, or other problem-solving steps I need to repeat.

To recap:

Start with defining what your problem is and then gather any information you have about your problem. Gathering information can include brainstorming and coming up with questions related to your problem. Next, break down your problem into smaller, more manageable, pieces.  Once your problem is broken down, you are dealing with more specific, smaller issues for which it’s easier to identify solutions. After you have identified solutions to the various pieces of your problem, you can select the best solution(s). Examine the results of your chosen solution(s). Test out your chosen solution(s) and review whether they worked or not. If they worked, great. If not, try going back to your original problem, breaking it down again into more/different parts, and identifying other possible solutions you can try.  Whether you like to write things down as you go through these steps, or talk through these steps with someone, problem-solving can take time so be patient with yourself and be open to having to try out multiple different solutions.

You can read more about this process, and find other information about problem- solving skills, on the University of Kent website.

“Your communication skills can be applied to thoughtful interactions with your family, friends and caregivers, thereby increasing your knowledge and avoiding unnecessary misunderstandings.”
-National Coalition for Cancer Survivorship 

Communicating with your healthcare team can be one of the most difficult parts of adjusting to cancer treatment or survivorship as teens or young adults.

As children or young teenagers, you get used to having your parents be the ones to pay attention to the details for you, stand up for you when necessary, and ask questions when things get confusing. However, as older teens and young adults, you begin to understand more about your health and this can lead to the challenging situation of wanting to take greater control of it but not knowing where to start.

When I was diagnosed with my relapse at 13 years old, I had learned enough biology and chemistry in school to understand the explanation the doctors provided me with regarding what my cancer was and how it would be treated. However, I had not yet developed the communication skills to know what to say or when to ask questions in my appointments. When do I talk to my fellow? What kind of questions do I ask him versus my nurse? What is the difference in the role of the physician assistant I so often saw in the outpatient center and the fellow who seemed to be in charge of my case? And how on earth do I speak up in front of a room full of medical students and residents who, even if they don't intend to, look at me and talk about me in a way that makes me feel like I am part of some kind of zoo tour? I mean, when you're a 13 year old girl with ragged hair falling out, almost no eyebrows left, hooked up to all kinds of things that make you feel like your body is rebelling against you, and are then woken at 8 am to the knock of a pile of 20-30 somethings who are dressed in professional attire with notebooks in hand, ready to discuss your bowel movements…...it just isn't conducive to comfortable conversation and communication.
Instead of trying to get answers, I just muddled along until the answers arose or until the situation went away. I only asked questions when I was in an outpatient appointment with the fellow I knew was in charge of my case, and I otherwise let my mom do all the talking.

But, I regret that, because I let myself think that all those people in the hospital were in control, and I did not take ownership of my own health.  Being able to take ownership of your health means it's necessary to learn how to effectively communicate with everyone involved in your care.  

To develop communication skills, I think the most important place to start is in recognizing you are in charge, and your healthcare team is just there to provide support, advice, and guidance to you.  In addition to remembering you are the one in charge, there are concrete things you can do to communicate more effectively. I found a really helpful outline on WikiHow about how to develop good communication skills: http://www.wikihow.com/Develop-Good-Communication-Skills

The outline includes several in-depth descriptions of different aspects of communication, but my favorite part of it is their 10-second summary of how to develop good communication skills.

1. Make eye contact with your audience.
2. Watch your body language.
3. Be a good listener.
4. Learn to enunciate your words and to slow them down.
5. Keep your voice animated and use appropriate volume for the setting.

I'll elaborate a little on what this means for AYAs in treatment or survivorship:

• Making eye contact is definitely key. In an outpatient appointment with your doctor or nurse, making eye contact with them as they talk, or as you talk, demonstrates to them that you are paying attention and seriously interested in understanding what is happening with your care. Even though it should not be necessary for you to demonstrate such interest to them, I found it helped them to realize that even though I was only 13, I wanted to be involved in any discussions or decisions about my care.Eye contact is even more important (albeit much harder to do) when you are dealing with the med students and residents while inpatient. Making eye contact with everyone in the room, especially the attending physician in charge of them all, puts you in the driver’s seat and demonstrates to them all that you are listening and evaluating all of their discussion, so they know to watch what they say and how they say it.

• Body language. This is also key. Part of body language is eye contact, but the other part of it is how you sit while you listen or speak. While listening, leaning towards the person speaking, nodding your head in understanding or making an expression of confusion if you don’t understand can help you ensure you are learning everything you need to in an understandable manner. While speaking, making eye contact, sitting up straight (as long as you feel well enough to), and gesturing with your hands while you speak, help to engage the person you are speaking to.

• Being a good listener is super important because you have to listen to be able to understand what information is being provided to you, and then to be able to ask questions accordingly.

• Speaking clearly (enunciating) and speaking slowly ensures the people listening to you can understand what you are saying.

• Animating your voice and speaking with appropriate volume for whatever setting you are in can also make a big difference. Tired or overwhelmed doctors may be more likely to pay attention and listen carefully when you animate your voice and speak a little louder. 

Using these tactics and remembering you are in charge of your health may help you take steps towards improving your communication with your healthcare team.  This, in turn, can help you maintain greater ownership over your health and care.

Following last week’s post, I’m going to start tackling this self-advocacy puzzle by writing about the first of the 4 sets of skills the National Coalition for Cancer Survivorship outlines as necessary to be a self-advocate: information-seeking skills.
 
In thinking about information-seeking skills from a teen/young adult perspective, I think the biggest barrier to developing good information-seeking skills is simply the availability and accessibility of information. If you don’t have the information readily available to you, and/or you don’t have an easy/understandable way to access it, it can next to impossible to know what to do. That is, after all, why I started this website and wrote my book: the information I wanted was not available or accessible to me.
 
That being said, I have learned a lot about seeking information since I started this blog about 6 years ago. And, for our age group, it's still unlikely the information you want will be handed directly to you. So, I want to share my biggest tips and tricks with you to equip you with the knowledge to be a better information-seeker. Disclaimer: These are all suggestions based on my personal experience with seeking information for myself, blog, and my book...this is not professional advice.
 
To me, the most important place to start when seeking information is with defining what information you are looking for. We are used to just plugging things into Google when we want answers, but when it comes to health research, it can be useful to follow a bit more of a specific process.
 
Step 1: Define what information you want. I like to turn the topic into a list of key words/phrases. Be as specific as possible.

• This may seem silly, but using key words and being as specific as possible can make the research process a lot easier. This tactic is helpful because a lot of major organizations and hospitals use something called Search Engine Optimization (SEO), which means they fill their website pages with key words that help search engines like Google to find those websites first and filter those websites to the top of Google Search lists. By using keywords, you can take advantage of SEO to find what you want, and get Google to work for you rather than against you.

 

• For example, if I want to research web-based programs for teens with cancer, I can definitely define that as my topic. But, if I put that into Google, it might take me hours to find something useful because hundreds of results will come up. So, I like to make a key word/phrase list. In this case, I would include “online forums for teens with cancer”, “video chat platforms for teens with cancer”, “hospitals that run web-based programs for their teen patients”, and “organizations that run online support programs for teens with cancer”. You can make this kind of list based on key words/phrases you already know (as I did in this example, since I know web-based programs include online forums, video chat platforms, etc.). Or, if you are not familiar with a topic, you can make the list by plugging your general topic into Google and scanning the results to see what key words/phrases you see continually come up.  For example, if I’ve just been diagnosed with leukemia and I want to learn more about it, but don’t know where to start, I put “leukemia” into Google. Scrolling down the results page, I see words like “Causes”, “Symptoms”, “Childhood”, and “Treatment”. So, I can make a list of search ideas by combining these key words. Given I want to find out of teenage leukemia, not childhood leukemia, I come up with the following: “teenage leukemia causes”, “teenage leukemia symptoms”, and “teenage leukemia treatment”. This way, I break down my search into smaller pieces that might lead me to more direct results.

 
This brings us to Step 2: Use the internet **very carefully**. I compiled almost everything I have written about on this website and in my book from online research. So, the information you want is out there, but you must know where to look, and it is critical to understand what are reliable sources of information. This is where the **very carefully** comes into play.

• Reliable sources of information include major health organizations, academic journals, or hospitals.  My main sources of information, for both the psychological and medical aspects of treatment and survivorship, tend to be major organizations that you can see have been around for a long time and have information provided by physicians, psychologist, nurses, or other health professionals (some examples include The National Cancer Institute, The American Cancer Society, Cancer Knowledge Network, Stupid Cancer, Livestrong, or hospital websites). You can check out the resources page of my site for more ideas on where to find the information you want. These sites are very useful because they provide a very wide range of resources, but also convey the information in a way that is much easier to understand.

 

• Another great way to find reliable sources of information, particularly if you want to get into the nitty-gritty science of cancer treatment, psychological services, and survivorship, is by taking a more academic approach to your research. The easiest route for this is Google Scholar because it easily allows you to search for research articles about almost anything. You still want to be careful when using this search tool though because there are a lot of medical journals out there and not every article is reliable.

 

• In Google Scholar, a good way to be sure the article you are reading is from a reputable source is to look at the number of times the article has been cited. For example, when I search in Google Scholar for “support for teens with cancer” I get a lot of results. But, when I look at the “Cited by…” under the link, I can see how many people have cited the article in their work. Below is a screenshot of one of the results of the Google Scholar search. You can see the "Cited by..." on the bottom left.

• Choosing articles that have been cited more than 20-30 times is a good idea, just to be on the safe side, because then you can be sure multiple other research professionals found the information reliable enough to use in their own work.

 
Step 3: Use the most recent information you can find.

• Another important thing to consider when using the academic research approach (and when doing any online research for that matter) is how recent the information is. In Google Scholar, you can filter out articles by the year they were published. It is generally a good rule of thumb to stick to research that has been done in the past 5-10 years.

 

• Similarly, when using websites like the National Cancer Institute site or Stupid Cancer, you can also keep an eye on how recent the information is. For example, on the National Cancer Institute website, there is a coping guide that talks about feelings and cancer. If you scroll all the way to the bottom of the page, you will find a “Posted” stamp, which says “Posted: December 2, 2014.”  These kind of date stamps can typically be found at the bottom of information pages. Alternatively, if you check out blogs, like this one, or the Stupid Cancer Blog, the date is typically at the top of the posting, under or next to the title.

 
Finally, we come to Step 4: Developing your resource portfolio.

• Once you have gone through several searches and have become familiar with a range of sources, you will start to find ones that you like more than others, or ones that publish new information on a continual basis. For me, my resource portfolio includes the resources I share on the resource page of this website, as well as the academic sources I find through Google Scholar. I also prefer sources that have something like a blog where there is new information shared on a regular basis, so I can keep up-to-date on the information I am interested in. For example, you can get email updates from certain organizations, like the Dana-Farber Cancer Institute Insight Blog, you can follow the National Cancer Institute on social media, and you can subscribe to the electronic or paper version of Cure Magazine. By becoming familiar with the sources of information out there, you can make it a lot easier to get the information you need, when you need it.

 
The reason I have found information-seeking skills to be so helpful is because they can increase your self-confidence. When you go into doctor’s appointments or meetings with health providers, and you are armed with the knowledge about your condition, you are better equipped to ask questions, and this ultimately helps you take greater control over your health and wellbeing. Long story short Information -> Knowledge -> Self-Confidence -> Owning your health and wellbeing.

In a post for Cancer Knowledge Network that I wrote back in November, I talked about the challenges involved in the transition from pediatric to adult healthcare, and the need for more support and education to be provided to teens and young adults to be able to successfully get through this transition. In the last couple of months, I have gotten to wondering what, above all other obstacles, is the most important thing to help get young people to feel comfortable taking charge of their own care? After talking with some other young adult cancer survivor friends, and some friends of mine who have chronic illnesses, one topic repeatedly came up in the discussion about transitioning to adult healthcare: self-advocacy.
 
So, what exactly is self-advocacy?
 
According to the National Coalition for Cancer Survivorship, self-advocacy means: “…You arm yourself with the tools and skills necessary to feel comfortable about asserting yourself and communicating clearly about your cancer care needs.” They also summarize that the skills necessary for self-advocacy include: information seeking skills, communication skills, problem-solving skills, and negotiation skills. 

Through further research, I also found that perspective can play a role in enabling or disabling you from successfully advocating for yourself. I came upon an article about self-advocacy by a psychologist, who is herself a cancer survivor, in the online magazine Psychology Today.  One statement she made that really stood out to me said that many patients “…may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions or alienating their doctors by questioning them.” This highlights a perspective that I know, from my own experience, seems to be at the heart of helping teens and young adults become self-advocates: learning that your doctors are not controlling authority figures and that there are no “dumb” questions.
 
To summarize, it seems there are 3 crucial pieces to this self-advocacy puzzle: (1) Developing a range of skills that enable you to feel confident in your ability to clearly communicate your needs, (2) recognizing that your doctors are not authority figures with control over your future, and (3) it’s your body and your health, so you are entitled to ask any question at all – there is no such thing as a “dumb” question.
 
Seeing as this is a pretty complicated puzzle, I thought I’d take some time to break it down. In my next few posts, I’ll cover each of these puzzle pieces, to try to make it easier for teenage and young adult cancer patients or survivors to piece together the necessities for becoming self-advocates.

For anyone searching for resources to help with the challenges of cancer treatment, one of my new favorites is Cure Magazine.  Cure publishes a variety of articles – anything from scientific breakthroughs in cancer treatment to patient stories.  My dad works in oncology, so subscribes to the magazine.  However, you can also access all of their articles on their website: curetoday.com.  

In their most recent issue, they included a special issue along with their magazine, called Medication Adherence and Financial Support.  While every article in the special issue seems incredibly valuable to me, I wanted to highlight one: The Samfund Launches New Toolkit to Guide Young Adults Through Cancer-Related Financial Decisions (you can also find it on curetoday.com).  The article covers a new toolkit developed by another awesome foundation (and great place to find resources), The Samfund.  According to Cure's article, the toolkit is designed to be a decision-making guide to help young adults make the tough decisions involved in the financial management of cancer treatment. You can access the toolkit and other financial resources provided by The Samfund HERE.  I did a test-drive of the toolkit and it is fantastic! It asks important questions to help determine what financial issues you need the most help with and it's so easy to use.  

After looking around for similar resources, I have not found any other tools quite like it. However, I did find a great list of financial assistance organizations on the Stupid Cancer website.  You can also check out Hope for Young Adults with Cancer, The Leukemia and Lymphoma Society, or Critical Mass for additional resources!

Happy Holidays! While I know I'm a bit behind in posting here, I have written two pieces in the last 2 months for Cancer Knowledge Network.  So, I wanted to share them here! The first - from November - is about the challenge of transitioning from pediatric to adult care for young cancer survivors: Challenging Changes.   The second is from earlier in December and is aimed to be a call to action for AYAs to get involved in making the changes they want to see in the cancer centers where they are being treated: Calling All AYAs.  Check out the links and post any comments or related suggestions below!! 

This month is childhood cancer awareness month.  While I love going gold for these 4 weeks of September, I think there is a lot more to this month than awareness.  Check out my latest blog for Cancer Knowledge Network to learn what September means to me, and how I think we can use these golden days to take action, rather than just raising awareness.

I recently celebrated my 22nd birthday and was so happy to be able to go home to celebrate it with my family and friends.  Having graduated college and moved away to Miami, so far from them all in Baltimore, has definitely been an adjustment.  But, as with all the challenges in life, it is a learning experience. 

For my birthday, my mom's sister and her family were able to drive down from New York to be with us for the weekend.  I am very close with my cousin, Julia, and was so happy to spend some time with her that weekend.  The most special thing of all was that, when it came time to open my birthday gifts, Julia told me she had picked out their family's gift to me all by herself.  When I opened it, I was so excited and so happy to see what it was.  Julia had picked out a simple, silver Alex&Ani bracelet with the "Path of Life" charm.  The charm on the bracelet says "Knowledge, Motivation, and Strength" and on the back of it there is a path design that twists and turns.  I don't think such a message could have come to me at a better time.

Having recently graduated college and moved to an entirely different city surrounded by completely new people, I was enjoying the excitement of all the new things.  However, I was also trying to figure out what part of my identity in this new place I would want "cancer survivor" to be.  

I was feeling so healthy, so happy, and so free in this new place during those first weeks here.  I got caught up in all of the new things and I guess I have not posted here in a long time because, for the first time in a long time, I did not have to think about my cancer at all for over 2 months.  I was not involved in any activities related to cancer.  I was not around any people that knew I had cancer.  I felt I had developed enough other aspects of my identity that I didn't need to disclose that as a part of my identity right away.  And that felt good for a little while I think.  

But, I have missed something these past 2 months and I couldn't figure out what it was. Looking at Julia's bracelet, I realized it was because of those twisting, turning experiences 7 years ago that I am where I am now.  It is because of those experiences that I was driven down the path I am on.  Last week, I gave my boyfriend (who I met soon after moving to Miami), a copy of my book.  I felt that it was important for me to share with him those experiences that have shaped me into who I am and what I want to do with my life.  

It is strange to me how I continue to learn and realize new things about myself and my experiences with cancer as I get older.  Now, as a young adult, I think about my cancer experiences in a very different way than I did when I first started this blog.  I am realizing how challenging it can be for young adult cancer survivors to navigate the world in the same way as their healthy peers.  When you move to a new place, make new friends, date, etc., it is challenging to know if, when, and how to share your cancer experiences with others.  For some, you may feel like you don't want to share any of it, and you may feel like it has no part in your identity.  For others, you may feel it is a big part of your identity.  You may have no long-term effects from treatment that affect your health, or you may have many.  There is such a wide spectrum along which the impact of cancer on you may fall.

I graduated from Duke University this past weekend and the commencement speaker was Duke’s basketball coach, Mike Krzyzewski.  I was really moved by his speech, which was one that clearly came from the heart and surprisingly philosophical for a renowned basketball coach.

​The three phrases that stuck with me the most were:

1. Expect great things
2. Get on a team with good people
3. Follow your heart

 
The more I thought about his speech and these phrases, the more I began to think that they were just as much applicable to cancer patients and survivors, as they were to college graduates. 
 
When I sat there in the football stadium at Duke University, listening to Coach K, I had the strange experience of my life flashing before my eyes.  Clarissa at 4 years old, being too tired from chemo to run around outside.  Clarissa at 8 years old playing with friends and running through the rain puddles, as healthy and happy as any child could possibly be.  Clarissa at 10 years old, holding her first dog, succeeding in school, and beginning to become a teenager.  Clarissa at 13 having her whole world crash down around her. 

​As I listened to Coach K speak, I couldn’t help but think back to the time when I had no idea if I would make it to that seat I was sitting in.  I had no idea that I would ever reach the end of college – especially not the end of college at my dream school.  And then I thought about how I got where I was sitting, how I made it into that stadium for Duke University Commencement 2016. 
 
I think I had done exactly what Coach K had suggested, without realizing it, because of my experience with cancer. 
 
My experience with cancer introduced me to a team of incredibly supportive and talented doctors, nurses, tutors, teachers, friends, and neighbors.  Cancer enabled me to get on a team with good people who continue to support and guide me to this day.
 
Cancer taught me to expect great things because the alternative was not one I wanted to consider.  I decided that getting through cancer would mean thinking positive and dreaming big – whether or not I would see those dreams through.
 
And I learned to follow my heart because cancer taught me that life was not a guarantee and any time I spent unhappy or unfulfilled was time wasted.  This life we live is given to us to find joy when things get tough, to find fulfillment when opportunity seems scarce, and to follow our passions so that we can give back to the world and make a difference. 
 
No matter who you are or where you are at in your experience with cancer, remember to expect great things for yourself, build a good team of supportive people who care about you and expect great things of you, and follow your heart!  You might just find yourself, many years later, in a place you could never have imagined!