The Way Forward: Recovery from Treatment

The time from discovery of a symptom – or a polyp – and diagnosis, through treatment, will likely be a matter of a few months.  Recovery will almost certainly last far longer than that.  You will have periodic exams and bloodwork to ensure that there is no recurrence or spread.  These may be done by the team that conducted your treatment, or you may need to find a specialist for High Resolution Anoscopy (HRA).  Even as the years pass, and physical and emotional health is restored, cancer survivors have been changed – forever.  Oliver Sacks, a well-known neurologist and himself a cancer patient, wrote about it this way: “Having cancer, any cancer, means an instant change in status, in one’s life.  The diagnosis is a threshold beyond which lies a lifetime, however long, of tests, treatments, vigilance—and always, whether conscious or unconscious, a sense of reservation about the future.”  (The Mind’s Eye; Alfred E.Knopf, 2010.)  Dr. Sacks reflected about the joy of the extra years his treatment gave him, as he faced the end of his life (which occurred in late 2015), in his essay "My Own Life."   Each  of us will have strategies for coping with this tremendous change; here is one set of recommendations, from meditation to de-cluttering your home.  Paul Klein, the author of Cancer Smancer, offers another list, the "Ten Commandments for Cancer Survival,"  on Oncolink.  A simpler way to put it, perhaps, is "What Happens When You Live?"   As Cosmo beauty editor Deanna Pai says, I lLived Through Cancer and It Still Sucks."   Even returning to work can be a difficult experience for cancer patients and survivors.  And there may be financial issues arising from treatment and its complications in daily life.  The HPV and Anal Cancer Foundation offers a list of resources for financial help here.

Dr. Eric Manheim, writes compellingly about cancer recovery, having been a patient himself.  And Dr. Julie Silver, an assistant professor of physical medicine and rehabilitation at Harvard Medical School, was so impaired by her breast cancer treatment that she co-founded a national system of cancer rehabilitation; for her articles, see this.  Breast cancer survivor Judith Hooper has some cogent observations, including from Dr. Sandra J. Horning, president of the American Society for Clinical Oncology, and herself a cancer survivor here.    Don't try to be a "good patient," as one blog writer puts it.  Understand your limits and ask for help.  And take a walk with your dog! 

Cancer centers and oncologists across the US are beginning to understand that recovery from cancer is, effectively, a kind of "rehabilitation," and requires a range of reconditioning programs.  Cancer induces for many of us a kind of long-term anxiety that seems not to end with treatment and good follow-up reports.  Regardless of how good those reports are, many - perhaps most - of us are afraid of recurrence.   Talk to your medical team about this before you finish treatment - and perhaps find yourself on the side of the road, wondering what to do now.  Physical recovery is key, and the followup routine with your doctors will help both you and them know how well you are doing.  The National Comprehensive Cancer Network publishes a set of guidelines for anal cancer that discuss the series of tests that you will undergo as  you move away from treatment; they are relatively easy to read and you just have to register to access them.  Look for the link on the top right-hand part of the page.  Help your doctors, who may not be completely expert on anal cancer, understand what is best practice!  (A colonoscopy, for example, is not useful in anal cancer followup.) Recommended preparation for one of these tests, the PET/CT scan, is here.  Very likely you've already experienced the tremendous stress that goes with waiting for test results. Talk to your doctors about the anxiety that even short waits bring - and try to win their agreement to call you as soon as possible - really meaning as soon as possible, not just when they get around to it!  The M.D.Anderson site offers some tips on "scanxiety" here, and a video discussion here; Cure Magazine has some tips for coping here.   If you have continuing pain, talk to your doctors and get help.  The National Comprehensive Cancer Network has a "Distress Thermometer" to help you organize your concerns and convey them to the doctors;  add your own issues to this list!  Some more suggestions for "getting out of your own way" are here.  And here's a fine farewell to fear.  

Many accounts focus on emotional recovery and balance rather than physical.  My own experience supports that.  I am doing pretty well physically, with the exception of the still uncertain activity of my bowels every day.  But I am still not healed emotionally.  I have much work to do.  Some involves exercise, which helps combat some of the bodily effects (stiffness, osteoporosis, feeling weak) and also charges up the mind; exercise is essential for cancer survivors.  Time Magazine also reports on this.  The American Cancer Society released guidelines in April, 2012 on exercise and nutrition's role in preventing recurrence.  See also this article on work at the National Cancer Institute on the benefits of exercise, and this one.  The Economist Magazine reports as well.  Some research indicates that group exercise among cancer survivors can greatly improve both physical and emotional wellbeing.   Recognizing the importance of exercise in recovery, the Livestrong Foundation sponsors exercise classes at many YMCAs, and otherwise promotes exercise; see their recommendations here.  Cure Magazine discusses the benefits of exercise here and here, and Memorial Sloan-Kettering Cancer Center reviews the exercise issue here.   Research in Denmark suggests that the adrenilin may be the causal agent.  Some studies indicate that just simple walking can have good benefits.  Lack of sleep can also be an issue.  Post-treatment fatigue may be an issue for many; check this website for links to articles about it.  And - the elephant in the bedroom - sexual issues post treatment are rarely discussed by doctors - but don’t be shy if you need help!  Here is a handy guide to what a healthy vagina/vulva look like, so you can “see for yourself” if you need medical help.

There are many supplements whose effects have not been thoroughly researched in the US but are well known elsewhere that may help restore balance.   The role of nutrition and supplements is captured in this discussion of integrative medicine.  The National Cancer Institute has a special site to discuss Complementary and Alternative Medicine, or CAM.   

Some of what I have to do is mind work – learning to meditate, learning to let go, learning to find something to be grateful for every day. And even though the association between stress and cancer is not yet clearly established, removing sources of stress seems important to me; see this report.   I will be doing these things for the rest of my life, however long that may be.  There are numerous books on becoming centered emotionally.  Some in my own library follow:  John Kabat-Zinn’s Full Catastrophe Living (Delta Trade Paperback 15th edition 2009) is a classic, based on Kabat-Zinn’s Stress Reduction Clinic at the University of Massachusetts Medical Center).  Kabat-Zinn and Dr. Andrew Weil have also produced a instruction CD set, Meditation for Optimum Health (Sounds True).  Joan Borysenko’s Minding the Body, Mending the Mind (Addison Wesley 1987), also a classic, developed from her work in the Mind/Body Clinic at Harvard Medical School; she presents ways that you can use the Clinic techniques in your own life.  Mindfulness-based Cancer Recovery by Linda E.Carlson and Michael Speca (New Harbinger Publications, 2010) is closely related to Kabat-Zinn’s program.  One of these books could help you!  Visit your local bookstore and find one that is right for you.  When you feel really pressed for time and unable to undertake "standard" meditation, try this simple practice, coherence, explained by Deborah Rozeman and Doc Childre here.   Dr. Andrew Weil has a simple breathing exercise that you might try as well; see exercise #3 here.  Don Vaughn discusses the "Calming Effect" of mindfulness meditation in Cure magazine.  Sleeping may be a problem, and meditation or yoga can help with that; see also this Harvard Health Blog discussion, and this commentary in Cure Magazine.  And Susan Gubar discusses the role of yoga in helping you to "let go."

Another book that I found inspiring is 365 Thank  Yous - The Year a Simple Act of Daily Gratitude Changed My Life, by John Kralik (Hyperion, 2010).  Kralik's story reminds me that no matter what's happening to me, I can find someone, some action, to be grateful for - and in doing so, grow stronger myself.  UC-Berkeley researcher Robert Emmons offers Ten Ways to make being grateful part of your life; the Greater Good site has many more articles and videos on the role of gratitude and achieving greater happiness. 

And don’t forget the powerful influence of music.  Learn what music heals you or invigorates you, and listen, or play, as often as you can.  Some resources  are here, here, and here.   A CD and book package, Graceful Passages, has been created by Wisdom of the World.  If you want to try music therapy, the American Music Therapy Association can assist you in finding a therapist in your area.  Meditation is another way to instill some calm in your life - here’s a piece about creating a meditation room at home.

As we go forward, every day is a gift – that’s why we call it the present!  You will have times when you are despondent, fatigued, or fearful. You may feel abandoned once the treatment is done.  You may also feel scared from time to time - small pains or symptoms that you would never have worried about before bring on thoughts of "is IT back?"   But you can take control, and "reinvent yourself" after cancer.   Venerable newsman, Sam Donaldson, talks here about taking control by refusing to be "down."

Somehow, shift the focus to those who love you and have stood with you, especially your caregiver, whose life has also been changed; the medical team whose skill has helped you fight this disease; whatever you are grateful for.

     The past is history

     Tomorrow is a mystery

     Today is a gift.

And while we might never forget the words “You have cancer,” two-time cancer fighter David Rakoff’s last lines in his collection of essays, Half Empty (Doubleday, 2010), are worth remembering as well:

“Everybody’s got something. In the end, what choice does one really have but to understand that truth, to really take it in, and then shop for groceries, get a haircut, do one’s work; get on with the business of one’s life.

That’s the hope, anyway."

You might want to think about writing your own story - what is called an "ethical will."  What do you want to be remembered about you?  What was important to you?  What would you like to leave behind you for the future?  One key element is forgiveness - of others, and of yourself.   We will all have to face the end someday; reflecting on what is important helps us remember that every day is important, as this essay by a patient with a different cancer reminds us .

There are many survivor stories out there.  Dan Duffy tells one and connects us all to it here in his account of Zack Sobiech.  Tell yours!

And here is a medical survey where you can share your treatment and recovery experiences, and help others!

© H. M. Carter-Tripp 2012