Surviving Survivorship: Return of CC

Maybe society sets us up a bit.    In the popular TV series’ “survivor”, if you come through something where the odds are not in your favor, if you “win” then you’re rewarded.   Survivorship is not an easy path to navigate.  Being a pediatric oncologist mentally prepared me to navigate the medical system, whereas the challenges of survivorship came more as a surprise.  As part of being a chemotherapy cheerleader for pediatric cancer patients, I told patients “cancer therapy sucks and life is placed on pause during treatment, but then a full life is waiting for you again”.    I hope for children, the external structure of school and parents, makes this mostly true, but now I imagine even for children that self-perceptions, relatability and reinvention has to be difficult.

I have observed that teenagers with cancer seem to psychologically thrive during treatment when they find a younger patient to “mentor”, whereas the children that isolate themselves tend to have a harder time.  Now I see this is probably the same for survivors and that the ones that use their experience to take care of others do better than the ones that isolate themselves.  Initially I was on the right path, helping a good friend diagnosed with leukemia towards the end of my treatment. If there is one thing that I would have done differently in the last couple of years, it would have been to start this blog earlier in my survivorship course, because I understand how that would have helped me navigate the terrain.  Not isolating yourself during the first 5 years of survivorship is as important as not isolating yourself during treatment.   The choices that I made pre-cancer, especially in friends that I made my “chosen family” ensured that I was supported and cared for during the treatment.  To me this is the thing that I am proudest of from my “first life”.    My “chosen family” amazed me every day and never let me feel isolated.  This is why my end of therapy gift was a handmade ornament that said “thank you for my life”, because 100% I would have not be alive without all of them; my heart still thanks them every day.  After cancer, I made a number of decisions and allowed the guilt of how much I relied on others put me in a much more isolating situation.  I hope that sharing these experiences helps others navigate this complicated time that too few of us experience (those of us who medically recover from stage 4 cancer that has less 5% 5 year survival).   I know if I can just help a couple of people with their own journey, then I can finally put the last 5 years to rest and embrace life having made a full recovery.  

Strength is what you need to make a full recovery, where recovery means that the quality of your “new life” is similar to the first.  This “new life” may resemble the “first life”, but more likely it may change directions.   It is a time to reestablish (new and old) enjoyments, goals and dreams and discover your new life path.  Often people equate strength to stoicism, self-reliance, and picking yourself back up, and moving on.   To clarify, this is not my definition of strength.  Similarly to treatment, surviving survivorship is a marathon and not a sprint.  It not how fast you cross the finish line, nor an external façade.   To me core strength is essentially being honest and compassionate towards yourself and others.  Our personalities and emotional fabric influence how this is perceived externally.  We should remain sensitive to this, but we can also open ourselves up to others which can help them be less judgmental.  Furthermore, I do not believe strength requires complete self-reliance, in my opinion sometimes life is just about taking turns of supporting and asking for support.   The challenge of dealing with such a long period of illness and recovery is that there is no way to fully give back the outpouring of support, even though you can pay it forward to others, it can feel unbalanced for a while.   For me, this translated into guilt.  I measure success in life not by coming out ahead as an individual, but the give and take and using each other’s  strengths and weaknesses to grow ourselves but also just to complement one another to the benefit of our community (of friends, family, society).  

A gift of being close to death is that it is apparent which values are important to our core. I felt happy, content and proud of what I had accomplished and could smile that I had a meaningful life.   I found the self-qualities that I valued most.  I appreciated that I worked through difficult times for self-growth, never stopped changing and strived to live an examined life.  I had dedicated periods to hard work, but valued that I eventually prioritized a balanced life that was joyous and fun (filled with lots of blues dancing, skiing, travels).  My heart felt filled by connections with friends.  I valued the time I spent to foster these relationships (my friends holiday dinner was a tradition).   I felt like I chose my friends wisely and they amazed me during my illness.   I felt very lucky that I experienced true love with people who would be in my life forever (and cared for me during my illness), even without having been married or in a permanent romantic relationship.  I built a career that I enjoyed, took pride in, and had very good relationships with my patient’s families and colleagues.  I did my very little part with what I had to offer, to make society a little bit of a better place, through my career and helping both strangers and friends in times of hardship.  This karma was returned to me and so many have helped me.  Of course I had a long list of goals and self-growth left undone (it clearly identified the 3 most important ones to me), but the big picture was that I felt I used my time on earth wisely, no regrets. 

Cancer gave me the opportunity to know myself in a deeper way, this is special but at times it makes me feel more misunderstood, and less able to relate then I did pre-cancer.  I feel like society and friends have certain platitudes that I use to share (although I have always been an independent thinker).  Knowing what I truly value when facing death has made me think differently. 

One of the frustrations of survivorship is that treatment, like many traumas leads to a degree of regression.   So that besides from new issues, many of us also revisit past struggles.   For me my second life has had a bumpy beginning (similar to my first life).   Luckily, I have my first life to remind me although it requires work, I thrive and can build a very successful life after a difficult period and likely better because of it.  I am starting out young again (identifying goals, reflecting, and reevaluating myself), but without the guidance of external structure that was part of my younger life, that sometimes feels disorienting.      Survivorship is also a time of mourning, we must respect our past lives enough to do that.  This is a natural process.  This mourning period is hard on ourselves and those who love us, and hit me unexpectedly.   

I also seem to lack some of the patience that I had in my first life, wanting to take advantage of every minute.  I have always esteemed the journey as much as the result, but facing the end has made me rush at times when my response should be to slow down.   If I could restart my restart again, I would take more time to mourn and then just allow the structure of my first life guide me a little longer.  I jumped into my second life a little too quickly.  That was until life intervened and made me pause.  When I treat pediatric bone marrow transplant patients, the high doses of chemotherapy and radiation have significant effects on many organs.   I have found in caring for these patients that the worst response when they are getting sick is to make a lot of changes at once in reaction.   It is much better to make a few tweaks, watch for response, and then continue to make small changes as needed.   Too much and the body does not physically respond well.  I think a similar approach is needed after dealing with a big traumatic experience, make changes, take chances, but sit still between changes and reevaluate and find joy in the journey.  For me, I made too many changes in too short a time, overwhelming me to the point that I needed to hibernate.   Just changing our thinking from only prioritizing life and death, to re-engaging to thinking about the complexity of life is challenging enough.   Be good to yourself and try not to overwhelm yourself. 

If I look back at the last 5 years, the adjustments that I should have made are clear.   It is exactly 5 years ago at age 36 when I was diagnosed with stage 4 cancer.  At that time I was faculty at a top children’s cancer hospital (the result of 13 years of training after college), finished my certifications, and had secured my own grants and awards.   I was having fun; attending blues dance events around the country, and had great friends in my life.  Then came the diagnosis and 7 cycles of inpatient chemotherapy with complications.  Then I had two huge surgeries that had major complications resulting in a very prolonged hospitalization where I was gravely ill and multiple times told that I would die soon.  When I finally was released, I would need home health for a while, but despite this I went back to work and the gym.    I had a lot of other family and friends have crises during this time, some which affected me directly, some helped me because I was able to “pay it forward”, others were very difficult issues for me.   Then I met my future ex-husband, he came to my “finished with therapy” house concert/dance party with a mutual friend.   Soon I would quit my job to move across the world with him.  Within weeks of getting married I had a secondary cancer scare, and found out I could not bear children.   I struggled with finding a job overseas (never did).  Although I wanted to embrace just being me and not letting my career define me, it ended up the wrong time and place and found myself very alone.   I was living in a country in the Middle East, did not have my go-to activities, and felt confined by my lack of savings (due to cancer).   I was a bit disappointed because I was looking forward to a cultural experience, but found it hard to meet locals and was surrounded by my husband’s co-workers (fantastic people but a unique dynamic).  I needed a period of play to do the things that I enjoyed and a true partner by my side.  I adapted some, found other things to embrace like cooking, but for the first time since childhood, I was completely dependent financially and for health insurance on someone else.   Also making it hard to adjust were that I was still physically ill and on medications.   I had a new husband who was going through a very difficult time with his immediate family, whom I did my best to support.   Then returned to the States (I started the blog just a few months before this time) and restarted my academic career at a significant level below where I had been previously.   On my first day of work I had another surgical complication which led to another difficult surgery.  Luckily some of “team jess” from my cancer treatment helped me around this time.   Moreover, I started work in a section of a department that dealing with internal issues and personnel changes which created a crazy start.   In the midst of figuring out that situation, my husband asked for a divorce.  The silver lining at the time, was where I use to feel less equip to navigate the political aspects of working in academia, I found that at this stage in my life, I could now handle a complicated situation in manner that made me proud.  It also gave me new appreciation for the mentorship and training that I had in the past.   Coming back not burned out (as one easily gets in academic medical career), allowed me to create better work product, which I valued even though now it was without the recognition that was given to me in the past.  I can see the possibility of my “new life” and how my illness and recovery enabled me to better implement tools that I have had all along if I continue with this long arduous path despite recent missteps.  So in the past 5 years there have been lots of changes in a relatively short time and the start of a vastly different life.  I had opportunities that were worth the leap back into life, but I would have benefited from slowing down.  I needed to remind myself that I have time to cross the finish line, but I did not, so I will remind you, the reader, instead. 

The parallels in my two lives have been interesting.   At the end of my first life, I had one interpersonal relationship from childhood that was unresolved.  Because I was lucky enough to have such a rich life in other ways I accepted this.   I had to because it was not completely in my control, and that person’s choices did not let allow them to be part of my life during my illness.   Of course I bare responsibility too, and not working harder at that relationship and instead opting for the easier path for instant happiness was my one small regret.  This was nothing that I wanted to repeat and I was very careful about this in my “first” adult life.    Part of the challenge of my second life is that in divorcing, I find myself facing a similar loss.    I know that for me that loving myself in the end comes from how I act on opportunities and decisions and not the instant gratification of happiness or to avoid periods of sadness. I felt incredibly lucky when we met, to have found my future family, so I have no regrets that when given the opportunity to move overseas because of his job early in our relationship that I took a chance and gave him my complete trust. I would rather live to jump at opportunities then to miss out.   Just wish the universe presented me with a different opportunity instead, and that I was not primed for this meeting by coping with the hospitlizations by daydreaming about my future husband and child.  Although knowing us, I think we had something to learn from one another that we never got to because other things got in the way.  Even more important to me, is that I made a decision to offer complete openness, honesty, and a commitment to work through all the obstacles we faced and sometimes created, because I believe that is the only way I got anything good in my life. I already had proven to myself that meaningful connections and long-term happiness is created from the decision to work through obstacles.  For me, doing this in a relationship ultimately creates a better partnership then without having any struggles.  Maybe this exposed me to more sadness now because it was not accepted, but living according to these values bring me a peace and contentment in my life.   I understand that I will always have a hole within me to honor this loss, but eventualy my life will fill again with many other things and the sadness replaced with acceptance, forgivness and joy.  I have now learned a couple of times in my survivorship course that my sense of living according to how I see “right and wrong” could be better balanced by long-term and/or self-interested thinking.   The transition to thinking about the long game and not just the short game takes time.  Survivorship struggles are taking me time to navigate, but I have rediscovered that I am willing to seize opportunity and make the decision of commiment self-qualities that I love.  I know in order to make my second life as successful as my first I must also start creating opportunities again which is hard and scarey but doable.  I hope if others face similar survivorship challenges that this reminds them that they are not alone.

I find myself now more in awe of my young patients, because I could not image what it would have been like to reevaluate life at a younger age.   Although I can still have a career and parts of my “first” life, I recognize this life is different.   I can’t imagine the high school kid that identifies themselves with something like a sports team, and then cannot participate at the same level when they return from treatment.   They need parents to provide structure to help them redefine themselves, but they also need time for self-discovery which all of a sudden is at accelerated pace because previously they had time to grow into themselves.   To these parents I would suggest providing structure and discipline during the early survivorship years but then slowly wean this away so that their children can explore who they want to be and to encourage and support such exploration (repeating that parenting transition from a younger child to an adolescent).   I am not a parent, but I imagine this is always a difficult balance, and more so for a medically challenged child.   Encourage your children to express their thoughts (talking, art, music), ask how they think they have changed, ask them how they relate to their peers, ask if they feel a need to reinvent themselves, ask how much space and how much support they need. 

I hope that changing the direction of this blog to be even more self-indulgent, can actually help others.      Thank you for your love and support, I am hoping to provide the same.

Survival Tips for Survivorship

1)    Be easy on yourself! Surround yourself with others who are easy on you.  Avoid self-pressure.  Don’t allow survivor’s guilt make you feel overwhelmed by what you must accomplish in your “new” life.  

2)    Body image issues from surgery and medications are normal.   Stay active and know things will feel “normal again”.

3)    Chemo-brain concerns can be normal.   Take your time returning to work and gain your confidence.   Read, do logic puzzles, and keep your mind active.

4)    Even though you may feel like you used up all the support you can expect from family and friends during treatment.   Survivorship, especially the early transition is just as hard (but different).  Don’t isolate yourself and still seek support.

5)    Take the time to help those going through something similar.  Sometimes supporting others can be the best way to heal ourselves!

6)    It’s natural to mourn your past life so give yourself that time. 

7)    You might want to just leap into your “new” life and experience your new path and dreams but just allow it develop slowly, no need to rush it (it may take years).  Try to enjoy the journey and stay proud of yourself!

8)    Allow yourself to feel all the emotions that survivorship brings.   Don’t be surprised if you find a new perspective, sometimes feel misunderstood, and less able to relate.   Remember knowing yourself better just like knowing others betters, is always a gift.  Let people know how the experience changed you.  

9)    After not being able to care for yourself for a long time, seek some external structure while reestablishing yourself.

10) Don’t feel too frustrated if you found that treatment led to a little regression of self-growth that you had already worked through in the past.   You overcame it once, and can again

11) Survivor guilt is real.   I felt guilty that I required so much support.   I felt guilty people that had spouses/children did not survive and I as a single person did. 

12)  Although I encourage everyone we share the earth with to do something impactful towards their community, family or humanity, spare yourself from feeling the pressure that the universe saved your life and that now you must do something with major impact right away.    I found too much pressure from myself to be paralyzing.

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7 Responses

  1. Suzanne
    Suzanne November 21, 2014 at 5:10 pm | | Reply

    Hello Dr. Jessica,

    Good to hear from you again, even if the interim has been challenging for you.

    Elizabeth was so young at diagnosis and even relapse that she remembers little of “before”. 7th grade and her treatments effects = major difficulties, but I’ll save these helpful words from your experiences for her. 11 years from diagnosis, 7 years from BMT and counting!

  2. Shaima
    Shaima November 21, 2014 at 8:04 pm | | Reply

    the sadness replaced with acceptance, forgivness and joy…
    You r so amazingly transparent to be able to summarise a whole book in one sentence
    I hope u have no more guilt
    Keep blogging pls!!!

  3. Jerry shafer
    Jerry shafer November 21, 2014 at 8:17 pm | | Reply

    Bravo!….well said,and well thought out.You hit many nails on the head.Another reason for me to be extremely proud of you.

  4. Diva
    Diva November 21, 2014 at 9:24 pm | | Reply

    Thanks Dr. Jess for this inspiring post, especially for those of us who are still fighting the disease and have to remain optimistic, even when nauseated beyond belief, have no energy to get out of bed, or are “praising the porcelain god”. I hope you continue with your blogs. They and YOU most importantly are so inspiring to the rare adrenal cancer Warriors who remain out in the world. Blessings to you!!!!!!

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