Getting back to normal

Completing treatment is a positive milestone on our journey.  We want, and expect, life to return to normal after the disruption.  Few of us resume life as it was before.  The person who went into treatment is usually not the same person who comes out of it.  Some, like Lance Armstrong, emerge from cancer to accomplish spectacular feats.  Other celebrities find a new life balance or lifestyle and inspire many survivors.  These celebrities are good role models for hope and for what we can accomplish after cancer.  But---they are the exception.

Our health status after treatment defines our “new normal”.   Reduced physical functioning, from treatment or disease, might limit our activities.  We might have reduced cognitive capacity.  Some women report memory and cognition impairments, known as “chemo fog”, up to a couple of years after treatment.  Some of us may experience a lingering fatigue and loss of energy.

These changes can make us feel awkward, embarrassed, or even inadequate.  It takes awhile to realize that you may never get back to where you were.  Every loss creates an opportunity.  Though we have lost something with the illness, we have gained something with the experience.  Athletes with career-ending injuries often remain in their sport by coaching or managing. 

Our journey can change our perspective.  Many of us look for meaning in our cancer experience.   We might:  re-assess our priorities; try something new that we’ve always wanted to do; live a more balanced and healthy life; spend more time with family; write a book; travel the world; wind-up a career; give back and volunteer; and even do the same as before, but differently.  Cancer celebrities’ high-powered achievements result from their own search for meaning.  Unlike most of us, they are supported by publicists, personal trainers, sponsors and other resources. 

Don’t feel pressured to get back to life as it was.  Take time to accept that things have changed and then re-invent yourself.  The “New You” is the product of your new normal and your new perspective.  Have faith that you will succeed in putting the pieces of your life back together.  However, if your recovery is taking too long, or is affecting those around you, consider getting help.

Once we embrace our “New You”, we can get on with living and embrace our loved ones and our survivorship.  

Survivorship 101: Transitioning from active treatment to post-treatment

Finishing treatment is the beginning of our survivorship journey.  Our destination is the return to a normal routine and life.  Before we get there, we must make the transition from active treatment to post-treatment. 

While we’re in treatment, we have the comfort of routine and oversight.  We know our treatment plan, test schedule, appointment dates, and next steps.  We meet with our oncologist on a regular basis.  Sometimes, we develop relationships with members of our treatment team. 

When our oncologist discharges us, it’s bittersweet.  We’re happy that we can resume our normal routine.  But it’s also scary because we won’t see our doctor for three months.  Because no one is watching over us, we may develop fears of recurrence and abandonment.  We’re usually on our own to get answers to our questions about how to stay healthy and cancer-free. 

The good news is that we can help ourselves and get help from others to fill this post-treatment gap.  You’ve recently focused on the short-term goal of completing treatment.  Now focus on the long-term goal of a future of health and well-being. 

Make and follow a plan to help you transition from patient to survivor.  Your personal action plan might include these activities: 

·      A celebration of your “graduation” from treatment.  Don’t forget about family, friends and others who helped you on your journey! 

·      An “exit interview” with your oncologist.  Address the issues that might arise before your next appointment in three months:  signs and symptoms of concern and whom to call; recovery time; restrictions on activity, exercise, work and routine; updates to insurers and employers; immune system matters; managing health risks after your treatment; and addressing physical quality of life issues.     

·      Check-in with your family physician.  Request a “20-minute” appointment with your family physician to give an update on your cancer treatment and current status.   Agree on a plan to monitor your post-treatment health risks.

·      Understand your cancer, its treatment and its risks.  Inform yourself about how your cancer and its treatment could affect you during your life. 

·      Assemble your health file.  Preparing the file can give you sense of closure to the treatment phase of your journey.  Include: your updated medical history; copies of your test results; a list of physicians consulted and why; information about your treatment and medications during treatment; a list of your current medications; and your doctors’ recommendations for monitoring.  Take it to your health appointments.

·      See your dentist.  Oral health is an important part of overall health.  If your oncologist gives the ok, get that dental check-up you’ve postponed because of treatment.  Update your dentist on your cancer, its treatment, medications and your current health status. 

·      Find and use community and internet resources.  Speak to survivors and/or professionals who can help you with your transition to post-care (e.g., cancer transition programs, support groups, peer counselors, psychosocial oncology programs, supportive care programs).

·      Regain your physical quality of life.  Get referrals to resolve treatment side effects that affect your physical quality of life, e.g., lymphadema, joint pain from steroids, vision or speech problems, etc.).  Contact the psychosocial oncology program at your cancer centre.  Staff in these programs include speech-language pathologists, physiotherapists, occupational therapists, clinical dieticians, and exercise specialists. 

·      Develop an exercise and movement plan.  Work with your doctors to develop a physical activity program that is right for you.  Then just do it---regularly.

·      Learn how to prevent cancer.  A focus on lifetime health and wellness requires a preventative approach.  Learn how to reduce your risk in daily life.

·      Take stock of emotions.  Use this time to assess whether there is any distress in your or your loved ones’ emotional, psychological, and social well-being.   Your cancer journey affects you, others and your relationships.

·      Get help for distress.  Get individual, couple or family counseling for emotional, psychological and social areas of distress.  Social workers, counselors, psychologists, psychiatrists, and spiritual care advisors are members of your lifetime health care team.

·      Prepare for reintegration.  Use this time to get ready to return to the workforce or social circles.  Put the pieces of your life back together.  Don’t be surprised if your priorities, needs, goals and capacities are different now.

 If you’re busy with your action plan, the three-month wait until your next appointment won’t seem so difficult.  You can take control of your survivorship!

Tuning out and focusing on surviving

We need our energy and strength to deal with cancer.   Negative thoughts can drain our energy.  I have heard many unsettling comments during my journey from family, friends and workplace colleagues.   Learning to deal with comments will help you preserve your precious energy.

Expect odd comments.  The friend who said, “You look great.  Are you sure you’re sick?” was probably trying to cheer me.  I didn’t have the energy to reply that the steroids in my chemo gave me those nice rosy cheeks. 

Some of our loved ones habitually make awkward comments.  I still am fond of my neighbor who asked me, “Are your work colleagues jealous because you’re taking an extended vacation?” I don’t want to travel with her if she thinks medical leave for cancer treatment is a vacation! 

In spite of the survival statistics and the progress in treatments, many people still associate cancer with death.  When I heard I had lymphoma, it was my first thought.  Thinking it is one thing.  But hearing it from our loved ones is another thing.  I was quite rattled when a doctor-friend said to me, “If I ever got cancer, I’d pack everything up because it’s a death sentence.”  I was speechless when a relative remarked about her inheritance, “Someday this will all be mine.” These insensitive comments can hurt.  Don’t dwell on them.  Give the benefit of the doubt.  Your cancer moves your loved ones out of their comfort zone.  Perhaps they are uncomfortable with your situation and don’t know what to say.  Perhaps the speakers’ comments are awkward vocalizations of their own mortality. Besides, we’ve all said bonehead things when afraid or nervous.  Our family and friends love us in spite of the things we may say or do---so why shouldn’t we love them? 

If you’re working, expect to hear some harsh words.  I was devastated when my boss said to me, “We’d like you to go on disability leave”.  Our work can give us self-esteem, an identity and a social network.  Many of us want to keep working if we can---it’s one less loss due to the illness.  The boss may compel you to take medical leave because your illness can affect workplace productivity and the bottom line.  Sometimes we can negotiate special arrangements such as working from home or shorter work hours.  The boss must balance compassion with the bottom line. 

Most importantly, don’t hold your family, friends and colleagues hostage to their comments.  The illness disrupts our lives and our relationships.  If nothing else works, remember the adage, “Don’t nurse a grudge”.  Instead, focus your energy on healing and surviving.

Finding my balance with mindfulness

Finding my balance with mindfulness

When I was diagnosed with Hodgkin’s Lymphoma, I was swept into a whirlwind of activities.  I neither had, nor gave myself, time to think about what was happening and how it would change my life.  The time from diagnosis to treatment was very short.  My treatment period was filled with activities---scans, blood tests, clinic visits, chemo treatments, exercise classes.  My objective was to complete the treatment.  My goal was to be in remission at the end of treatment.  For eight months, I was “doing”.

My project ran relatively smoothly.  Though there were no complications, there were side effects, the worst of which was insomnia.   At first, the steroids were the cause.  Later, my emotions, which had finally caught up with me, were the culprit.  I lived with a paralyzing fear of how the illness would change my life and a fear that it would recur.  Despite being told that I was in remission, I panicked at every chill, pain, tender area and sneeze, fearing the disease had returned.  To add to my anxiety, a CT scan showed a mass that the doctors suspected might be ovarian cancer.  In addition to worrying about a relapse, I started worrying about a new cancer.  The stress and worry affected my relationship with my husband and our marriage.  Desperate, I enrolled in a Mindfulness-Based Stress Reduction Program offered in the community. 

Mindfulness practice cultivates non-judgmental awareness in daily life.  I became aware that my mind was like a cassette tape on fast forward---playing a seemingly endless series of worries about the future.  About mid-way through the program, the doctors told me I had a relapse.  The news so overwhelmed me that it threw me off balance---literally.  At the program’s full-day silence retreat, I could not do the ‘silent walking’ exercise without stumbling. 

I was physically and emotionally off balance.   But, I had a new tool to regain my equilibrium.  Using the mindfulness technique of responding, instead of reacting, I could gain more control and have a better perspective.  This enabled me to develop a plan to collect information and explore treatment options.  My husband and I made a decision to enjoy the summer.  We could still enjoy the moment!

When I am mindful, I am awake, and aware of life’s precious moments.  In the past, I rushed from place to place, meeting to meeting, never stopping to enjoy the moment.  Now, when I walk, I “feel” the sidewalk and am conscious of what I hear and see.  I appreciate the simplicity and beauty of walking.  I no longer take mundane activities like washing the dishes or brushing the cat for granted.  My life has more balance and I am more content to just “be”.

Practicing mindfulness requires lots of work and discipline but the rewards are great.  I fall asleep by watching and counting my breath rather than by taking sleeping pills.  I know that responding is more effective than reacting.  When I respond calmly but with certainty, I feel my energy and sense of well-being increase.  I acknowledge my emotions but try to stay in the present moment.   

Mindfulness helps me cope with the uncertainty.  The fears of another recurrence and of a new cancer will always be there.  I will acknowledge, but not dwell on, my feelings and fears.  I don’t want to miss a single moment of my life!

"I didn't know I had that in me"

"I didn't know I had that in me."
Through no one's fault but his own, Walter Robinson got in the ring at Fight For The Cure on Saturday for a third in a row and this time it was a real fight! This was no exhibition like the two previous years. George Boszormeny (Owner of Castor HVAC and President of the Entrepreneurs Organization) gave Walter all he could handle right out of the gate! I stood ringside as at about 30 seconds in, a frustrated and seemingly surprised Walter put his hands down, shook his head and reset. The two men fought it out and it was a great fight! Walter got the split-decision victory, but they both brought victory to the night. I asked Walter how was feeling the next morning and he responded "I didn't know I had that in me." This sentiment is what stands as the credo of the ORCF survivorship message. The boxing is analogous to the FIGHT cancer patients have to endure and is the reason these guys get in the ring. I think the message Walter and the Foundation is sending is two-fold: "you're stronger than you think" and "you are not alone."

Character
The event was an astounding success and something I noticed as it happened throughout the night that gave gave me a sense of enormous pride and encouragement was the 50/50 draw. We could barely keep up with sales. The attendees had purchased their tickets to be there which are not inexpensive, they purchased many items from the silent auction then went back in their wallets and bought 50/50 tickets as if they were life-jackets on the Titanic. I already knew the rock-solid character of our fighters, our volunteers, our committee, the sponsors, but how incredible is it that you can see the transparent supportive character of our attendees. I applaud you all! You blew me away. Also, the winner of the 50/50 draw donated half of his winnings right back to the event.

Volunteers
How can you thank people that come in on their own volition just to help? Guys, if you all had not been a part of this incredible event it would not have reached the level it reached. I completely demonstrated my total lack of ticket organization and you guys absolutely saved the night! Every volunteer was amazing! Thank you all!!! And I promise that we will be better prepared next year with our lessons learned. Morgan, thank you!

Sponsors
The Heart & Crown was, of course, awesome. The Hampton's Suzanne and Mowsen and the rest of the staff we're incredible. Konica-Minolta, who came to us and said "We want to help", were great and I hope had a great time ringside, thank you Andre. The OBJ, Boxing Ontario and all the door prizes that were given, thank you. In an event where I feel I should be thanking them (which of course I did), each and every sponsor thanked ME for letting them be a part of the event. I think we may have something here.
A special note, the Heart & Crown gave every attendee a $25 gift certificate to their restaurant and a $50 gift certificate to every volunteer and boxer at the event. At every turn I got a call from them asking "What else can we do?" These guys are a class act all the way!


If I forgot to thank anybody, my apologies and I owe you a drink.  I think you know where…

Trying to live well as a survivor

Nine years ago, when I was diagnosed with Hodgkin’s Lymphoma, I chose to take an active role in restoring my health and quality of life. I empowered myself by adopting and practicing nine tenets:
1. Participate

The medical literature suggests that patients involved in treatment decisions generally have better health outcomes and/or quality of life. I chose to be a partner with my doctors. I got up to speed on my disease and its treatments. When I met my doctors, I didn’t just talk about body parts---I mentioned my feelings, concerns and preferences. I asked questions. My husband spoke for me sometimes.
2. Explore options

Making a treatment decision can be especially difficult if there are many options, uncertain outcomes or significant risks. In my case, the doctors proposed the ‘gold standard’ treatment for relapsed Hodgkin’s Disease. Because it leaves the patient without an immune system for 10-14 days, I wanted to be certain that the treatment was right for me.
I was fortunate because my doctors supported my request to have additional options and because I had the wherewithal and time available to explore them. I took the appropriate, yet agreed to, time to make a decision. I obtained other medical opinions and expanded my list of options. Talking with the doctors about the options helped me adjust my expectations of what the treatments could realistically deliver, i.e. cure vs. remission vs. control. At the end of the exercise, it was clear which treatment was best for me. By the way, it was the one that the doctors initially proposed. Exploring and assessing options helped me “buy in” to the proposed treatment.

3. Commit

I committed to my doctors to follow the treatment plan. I followed their directions on infection control, activity level and medications. I got their approval before undertaking any complimentary therapies. I did everything I could to improve my chances of success.

4. Set goals

I set goals to regain a sense of control during the treatments. I got involved again with figure skating and I aimed to become a judge. I set a goal that I would be well enough at my six-month transplant milestone to attend a reception with the skaters of “Stars on Ice” which my husband had arranged. I still smile when I look at the photo of me with Olympic champion Alexei Yagudin!

5. Lead the project

I viewed my treatment as a project, much like a household renovation. I was, after all, renovating my health! I declared myself “Project Manager” of a team of specialists, nurses, physiotherapists, kinesiologists, social workers, psychologists, nutritionists, counselors, clerics and pharmacists. Our team’s objective was to make me whole again.

As “Project Manager”, rather than “Patient”, I viewed my journey differently. I was a leader. As Project Manager, I kept informed to keep my project on track. I didn’t ‘see my doctors at appointments’. Rather, I ‘spoke with my doctors at meetings’. I prepared a meeting agenda to make the most of my fifteen minutes. I asked probing questions to understand and make decisions. When I got test results, I asked about the “next steps”. I followed up if test results were delayed or forgotten.

6. Protect relationships and caregivers

It was my responsibility as Project Manager to look out for my husband. As Caregiver and Advocate, he was an important member of my team. An unwell or distressed caregiver cannot help. To address his fears and concerns, my husband spoke with a counselor at a family support program. My husband and I took a course to improve our communication which had faltered under the stress of the relapse.

7. Treat the body; mind the spirit

When I needed it, I sought support from a therapist, social workers and my parish priest. For me, the diagnosis represented losses of health, life as I knew it, career, identity and self-esteem. For others, it can mean financial pressures, role changes, depression, loss of functioning, etc. I needed help from professionals to deal with my fears, losses and feelings.

My faith sustained me. It gave me strength to know that family, friends and members of my church community were keeping me in their thoughts and prayers.

I joined a support group and programs in the community. I learned coping strategies and shared openly with others in a similar situation. Talk to survivors, not doctors, to learn what it’s really like to live with a particular cancer.

8. Maintain physical fitness

With my doctor’s approval, I joined an exercise rehabilitation program. It was a way for me to measure my recovery. I felt better. A regular fitness routine helped me tolerate and recover from multiple treatment courses and cope better with side effects.

9. Build a “survival kit”

As a lymphoma survivor, I might face multiple periods of treatment and remission. My survival kit includes practitioner coordinates, exercise, diet and nutrition, deep breathing techniques, meditations, mindfulness exercises, creative visualizations and imagery, affirmations, prayers, detoxifications, bubble bath, pictures of cute kittens, jokes, family photos and complimentary therapies. Whatever can help my health, make me feel better or help me cope with the uncertainty goes in the survival kit. Everyone’s survival kit is unique. Hopefully, this blog will end up in someone’s survival kit!

Though it continues to be a lot of work to live by these tenets, it is worth it. I’m happy to say that I am living well as a survivor.