My treatment isn’t finished. I look at my diagnosis as a chronic disease that has to be managed as best as possible and with as little disruption to normal life as possible. –PG

Coping with treatment can look different for all of us. The type of illness, surgery, or experience can affect how we manage. Yet, there are many commonalities among all.

Finding Information

Over the years, organizations promoting education and understanding of specific diseases and situations have emerged. Now, with the proliferation of internet use, we can search out, for example, the American Heart Association, American Cancer Society, or the Multiple Sclerosis Foundation of America. On these types of sites, valuable information is given about side effects, medications, treatments, support groups, and more.

Working with Medical Personnel

If confusion and distress dominate, I take more time to try to get a handle on exactly which part of what I said is having this impact and try to address that directly. The best approach is to be honest and clear, but to define what can be done and where it may take the patient.
–Dr. Ted Lee, hematologist and oncologist

I wanted to be a positive patient for those caring for me. I knew I had to stay strong and take my journey one day (one hour?) at a time. I wanted to be supportive of the people who were taking care of me to save my life. –GM

I do my best to understand what exactly the patient wants to know about the diagnosis and what aspect of it is the most important for him or her (e.g., the details of the treatment, the prognosis of the disease in specific terms – am I going to see my child graduating, would I be able to work). –Dr. Vadim Gushchin, surgical oncologist

Harry survived eight years following his kidney cancer diagnosis — nothing short of miraculous. The twists and turns of his medical journey took him through a range of treatments, some traditional and others experimental. Not only did he outlive the statistics and projections given for his specific situation, but he also embraced every moment he was given.

The “Harry stories” friends and family shared at his funeral illustrated his engaging personality and ability to put others at ease. Harry was one of those patients whom all the staff wanted to work with. He was appreciative, funny, respectful, and truly cared about those who cared for him. He could fight while maintaining the best of himself.

I hope to be a patient like Harry, but I know that we can’t always be. Sometimes the pain, worry, and unknown grab us by the heart and soul, yanking us into being cranky, whiny, sad, and angry.

If we hide our emotions and reactions, we don’t always get the help we need. Masking how we feel doesn’t give the medical team a chance to grasp the depths of our concerns and side effects.

While we all could use a little Harry in our behavior and intentions, it is important to share who we are and what we’re going through to gain the best support and advice from our medical team.

Be Prepared for Your Visits

1. Make a list of your questions
2. Identify the two most important questions for that visit
3. Make a copy and give your list to your practitioner
4. Have a complete list of your symptoms, concerns, recent changes, etc.
5. Have a complete list of medications, along with over-the-counter supplements you’re taking, so it can be determined if there are any interactions
6. List any medication side effects
7. Ask for suggestions on how to lessen side effects
8. If you need more time, ask for another appointment or to have an extended appointment ahead of time
9. If you don’t understand, ask for clarification

Professional websites (e.g., American Heart Association), physician offices, and hospitals often have a list of what to know and suggestions for appointments.

Remember what you identified as your trauma reaction tendency and utilize those suggestions.

Courage, faith, and good doctors will get you through. Listen to your doctor, and if you don’t like the doctor, find another one. –KM

Trust your gut feeling. If it doesn’t feel right, get a second opinion. –GW

Be an advocate for yourself. No one takes better care of you than you do. I kicked a stupid doctor on call out of my ISOLATION room at the hospital when she came in sick. I was running a high fever and experiencing some other scary symptoms and she was going to give me an infusion of some kind. I insisted on calling my actual oncologist (in the middle of the night) and it turned out I didn’t need the infusion, I needed something else. –LL

I requested that only doctors I trusted were allowed to check on me. –GW

My breast cancer was found during a mammogram. I was contacted by the radiology center. I never received a phone call or message from my gynecologist to see how I was doing. Needless to say, she never heard from me again. –MB

I find the most helpful approach when working with individuals experiencing a medical crisis is to independently research their history and medical information after hours. This allows me, as a provider, to better understand the various physical, emotional and psychological aspects of a patient. This ultimately enhances trust in the relationship and allows a greater ability to provide for the patient’s well-being. –Dr. Leeshi Feldman, M.D. psychiatrist

Nurturing a Positive Mindset

Be tough. Force yourself to believe that you will get through it. Recognize that the person you are with this illness is not who you will always be. Focus on the positive and surround yourself with positive people. ­–JN

Hippocrates, considered the father of medicine, believed health is influenced by a balance of the mind, body, and environment. Over the millennia, the mind-body connection has been studied and valued, eventually emerging into our everyday language.

An idea behind the mind/body connection is that positive thoughts alter brain chemistry and not only help you feel better but reduce stress. Over time, stress can negatively affect health and interferes with the immune system, which is needed to combat simple diseases (colds) as well as more complex ones. Thus, managing stress is an important goal.

Having a positive mindset can be challenging. It is natural to feel upset, angry, sad, anxious, or detached. Creating positive messages and using them during the day can help balance out less desirable thoughts and feelings.

I lie on the radiation table awaiting the blast of radiation to destroy the tumor. The machine emits a whir. It is the sound that the radiation is being sent. “May the force be with you” echoes through my mind. I am not a Star Wars groupie, but the well-known idiom connotes wishing one well, to be given strength and protection. Every morning as the machine whirls three times, I think “May the force be with me.” –CS

Don’t give up. Believe, even if the odds are against it, that you will survive. –MF

Mental outlook will have a huge impact on how you respond to therapy and recovery. Imagine yourself as a warrior vs a victim and DO BATTLE! –BK

Make the decision to live. –SR

Watch comedies, try to laugh, and eat what you can/whatever you want! –LT

DON’T try to read everything you can get your hands on or on the internet.
There is so much out there, and everyone is different. –DH

Before my surgery, I recorded hours of uplifting music and played it continually while in the hospital. –GW

Cindy’s Journey  I Like Apologies

I like apologies. There are all different types. Some apologies acknowledge a mistake: “I’m sorry I broke your phone.” Other apologies express sorrow: “I’m sorry that happened to you.” Still others express regret over unintended consequences: “I’m sorry I hurt your feelings.” And the master of all: “I am sorry, I was wrong.” These are apologies I like. When they are delivered sincerely, they strengthen bonds of relationships and understanding. They ease the burdens of others by becoming shared experiences. They serve as a reflection of one’s inner self. It takes inner strength, self-confidence, and a good soul to express an apology.

Preparing for the day, I open the drawer containing my wide selection of head coverings. The chilly winter temperatures and my self-consciousness demand that I cover my bald head; I search through the stacks of colorful fabrics, deciding which one to wear. I opt for a covering that can be a neck warmer or a headband that covers my head. With a mere twist of fabric, it serves various functions. Pulling it onto my head, covering my ears, and stuffing the excess fabric underneath my favorite Vineyard Vines™ baseball cap, I am off to my physical therapy appointment.

Climbing onto the physical therapy table, I toss my baseball cap onto the chair. The oversized headband flops to the side, revealing the top of my bald head. “I’m sorry,” slips out of my mouth.

What?! I’m sorry? Why would I apologize for being bald? While explaining the sources of my back pain to the physical therapist, I carry on a private conversation in my mind, admonishing myself for apologizing for something that needs no apology. My mind digs deep to find what evokes such an apology, only to find it originates in my sense of vulnerability with my altered appearance. So I give the most important apology…to myself. “I’m sorry I said I am sorry.”

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Finding Supplemental Support

Seek support from peer groups, books, alternative therapies, and all the people in your life who are willing to give it. –MF

Throughout this journey, as well as in life, it’s important to find ways to reduce and handle the stress in life. It’s important to find what works for you. What might work one day versus another can change, so having a variety of options is helpful.

When it came to treatment options, I signed up for all of them. Anything that made sense, I did. Radiation, chemo, stem cell transplant, yup, I would do it. The research showed that in cases like mine, they could help prolong and restore the quality of my life. Yet, I wasn’t going to depend solely on Western medicine. I embraced other interventions; for example, acupuncture and EMDR (Eye Movement Desensitization Reprocessing) for the emotional impact of what I was going through.

To help reduce stress and increase overall well-being, many seek out meditation. When some think of meditation, they think of clearing their minds of every thought or repeating a mantra. While these are particular types of meditation, there are many forms. Having taught meditation to a wide variety of people over the years, I find guided meditation the easiest approach for many. In guided meditation, a leader uses words, progressive relaxation techniques, and/or specific images to lead the meditator through an experience. Quality meditation sites include Headspace™, Calm™, Jason Stephenson on Spotify, Oprah and Deepak Chopra’s 21-Day Meditation Experience, and MeMoves™. MeMoves™ is particularly helpful for those who find moving calming.

Guided mindfulness meditations help me handle the pain. –CK

I felt such anxiety. I think part of it was due to medication. There are some good psychiatrists and other physicians who should be able to help you with your anxiety. Some medications can mitigate anxiety. In certain cases, you could also benefit from therapy. –GM

Acupuncture was a godsend. –BK

The pain and PTSD that I experienced got me into yoga. My first teacher was so inspirational that I trained with her for two years and went on to teach. The pain I experienced led me in this direction. –GW

I am not a religious person. I am, however, spiritual. When we lost our 23-year-old son in an accident in 1999, religion pretty much left me. I have since found that meditation and Buddhist writings are a comfort to me. I don’t think any of that changed during my battle. I just think that the meditation helped me keep a perspective that was healthy and manageable. –SR

Cindy’s Journey  You’re Doing Great

My life is carved around doctor appointments. Traveling there, sitting in the waiting room, the weigh-in, blood pressure check, the blood draw, each usurping precious moments of my life. Then there is the verbal check-in:

• Trouble breathing? No
• Coughing? No
• Numbness? Some
• Nausea? Some
• Diarrhea? Yes
• Constipation? No
• Pain? Some

As the checklist routine marches on, I blurt, “I try to walk a couple of miles a day.” My doctor’s eyes brighten as he exclaims, “That’s great!” I smile, feeling I earned the Patient of the Week Award. My inner joy fades as I want him to ask about the nonphysical impacts of treatment, but he helps me sit up and announces, “You’re doing great. Really great!” I nod my head in compliance. I am doing great… until I’m not.

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Support Team

It is typical to have more than one medical professional involved in our care.  For me, my internist helped me through.

There were moments and days when tears came quickly, sadness set in, and I wanted to hibernate. All else was pushed to the background when these feelings took center stage. As the upsetting days linked together, I knew I needed something more. I called my internist, described how I was feeling, and announced, “I need drugs.”

She told me she often sees around the third month of treatment, patients have a surge in emotions. When first diagnosed, adrenaline is pumping. The focus is on gathering information, scheduling appointments, and creating a plan to deal with the ensuing changes and needs. Around the third month, the adrenaline abates, side effects find their place, and how life has changed becomes clearer. She prescribed Wellbutrin, which thankfully has helped. It has given me an emotional foundation again, so when the distress comes, I don’t go as low. I periodically see a therapist, who is also a support. Medication and therapy lessen the frequency of the times when I am not “doing great.”

Knowing how to seek out support is easier for me due to my profession, but I know many people don’t know where to begin. I worry about them. Many medical teams don’t want to discuss or hear about emotions. I’ve seen it. I start to ask a question about the unsettling feelings I am having and the PA unconsciously takes steps backward, signaling her discomfort with feelings.

I want treatment teams to ask about our emotional well-being as part of the weekly checklist. Diseases don’t just affect our bodies. It would be simple. “How has this affected your emotions?” “How has your treatment impacted your daily life?” I imagine some patients sighing in relief that the question has been asked, whereas others might utter a blanket, “I’m fine,” quickly scurrying to more comfortable territory. Regardless of our responses, asking such questions would affirm the normalcy of our emotions and the impact of the treatment.

When my treatment journey is said and done, I might go on a mission to enlighten and teach those in the medical profession how to better support their patient’s mental and emotional health during the healing process. Who knows? I might just do it. What I do know is we are all doing great… until we’re not.

Changing Your Ways

Learn to say YES to help. –BK

We get set in patterns and routines because they bring us comfort. When in crisis, the patterns and routines of the past are often shattered. Medical challenges often force us to live differently.

Lisa Cohen, who seeks to empower women with multiple sclerosis in her 2005 book, Overcoming the BS of MS: A 3-Step Plan for Women Living with Multiple Sclerosis, suggests setting goals you might have previously thought were impossible, such as “I am not a person who wears red” or “I could never write a blog”. Cohen suggests taking one of your impossible goals and begin to chip away at it, acting as if this behavior suits you. She points out that doing something you didn’t think you could can lead you to discover you can!

The whole notion is to step beyond what you used to do and discover a new part of yourself that might otherwise stay buried if it weren’t for the challenges you face.

If you can, get a bed that adjusts so you can sleep better. –SR

This was more than a health issue for me. In the end, it was an indication that I needed to improve the way I handle “life situations”, as they are inevitable as I age. I can rise to any challenge with family, business, and life activities, but was woeful in a case that had me at the center. –DP

I know that loneliness is one of the worst things. Feeling isolated, alone and depressed has led me to appreciate friendship far more deeply. –DC

I made a list of all that I was grateful for.  It was easy to get absorbed in the challenges. –TE

One of my mother’s perspectives on challenging times is, “It could be worse.” How true that is. We can always look around us and see others who face more significant challenges but staying grateful when our worlds turn topsy-turvy is a challenge in and of itself. As turmoil pulls our attention inward, it is natural to feel the tug of emotions and pain. Yet, focusing on something we feel grateful for helps buoy us during these tough times.

To encourage my gratefulness, I hang cards and pictures that others sent wishing me well on my home office wall. While my crisis has subsided, their wishes remain on my wall. Seeing the cards continues to encourage me and warms my heart.

In a moment when you feel grateful, create a list of what you are grateful for, even during this time of challenge. Then, when you feel down or out of sorts, you can look back at this list to help regain some balance. To help start you off, below are suggestions from others that helped them experience gratitude.

Workbook Chapter 12 Pathways to Coping Grateful

Write down the people in your life you are grateful for and what it is they bring to your life to make it better.

Person	What they bring to my life

 

List things you like about yourself.

List experiences for which you are grateful.

Due to osteoarthritis, I can’t do a lot of what I would like to do. I watch others run, do aerobics, get up and down from the floor with their children, and I feel envious. I am not a fan of envy, so I thank God that I can walk and work in my yard. –LE

Faith

I got angry with God. It was just too much. I still don’t understand it. –LF

Shifting out of the initial shock of our crisis gives us some time to reflect. Why did this happen? Could I have done anything to prevent it? What’s going to happen next? These questions tend to spark a review of what we believe. We look for cause and effect.

It is human nature to seek patterns in our lives. Seeing patterns allows us to connect the dots of what we experience. Connecting the dots helps us attach meaning to our experiences. Finding meaning can give feelings of comfort and control or force us to question what we thought was true.

For example, if a dog bit us when we were young, we might be afraid of dogs. The dog bite (a dot) connects with the idea that we could be bitten again. The possibility we could be bitten creates fear. That knowledge and fear lead us to cross to the other side of the street when we see a dog approaching. When we walk on the other side of the street away from the dog, we aren’t bitten, which reinforces the idea we should avoid dogs.

As we reflect on this example, we can see how walking on the other side of the road would make someone feel better, as well as not getting bitten. On the other hand, we know if we stay on the side where the dog is, there is a good probability we won’t be bitten then, either. But when it comes to fear and trauma, risks are not what we usually want to take.

While the example is simple to understand, it applies to a variety of challenges. Simple or complex, our brains seek out reasons why things happen the way they do because if we understand the underlying why, we believe we can avoid bad things from happening in the future.

For many, religion, faith, and beliefs serve as a foundation to understand the world beyond what we can see. Crises increase the brain’s desire to understand, often causing us to reevaluate our beliefs. This reevaluation leads some to stronger religious beliefs, while others experience a departure from their faith. Still, others seek reason and comfort outside of organized religion.

My struggles forced me to contemplate what brings purpose and meaning to my life, and that included evaluating my faith. –FE

Strengthening Faith

This experience brought us closer to each other and faith in God’s plan for our life. –SJ

Many religious organizations provide comfort through traditions, beliefs, and community. While the value of religious organizations can support individuals through typical days, they can take on deeper importance during challenging times.

My faith grew immensely. I didn’t fear dying. I felt an astonishing peace that comes from my faith. –BK

I pray daily and needed to talk to God a lot during this journey. –LW

My faith played a large part and I totally believed that it would be over soon. –KM

On a daily, hourly, and sometimes minute-by-minute basis, I begged God, Jesus and the Blessed Mother not to let me die. When I prayed the hardest, the prayers were answered, even if it was just in a small way, like the relief of a particularly bad symptom or fear. –MF

My faith helped me face my challenges with strength. –MR

I always considered myself to be a spiritual person, and that quality intensified during diagnosis, treatment, and afterward. My religious community and leaders were very supportive. I continue to see myself as a more spiritual person post-illness. –JN

I know that people were praying for me and my recovery, and I truly feel that it helped in my healing. –DH

Losing Faith

To be honest, I was angry at God. I couldn’t understand how this could happen to such a good person. I guess that means I still believe in a God/force, but maybe not. –BS

When challenges are faced, it can create an upheaval in one’s belief system.

My faith and/or spiritual outlook are “diminished.”–LT

I have to say that when it all first happened, I felt as if I were being punished. –GW

I wonder if miracles are real and if we may ever be spared one. I question my faith, especially when I see others with the same diagnosis embracing theirs as their child improves. –RR

I have a hard time going to church these days. –AR

I struggle with my faith. We did everything right. Why was she targeted? She had just gotten married and had her whole life ahead of her. –JG

Spirituality

I’m a spiritual person rather than religious. I talked to God a lot, thanking him/her for the good fortune that it was found. I feel I’m the luckiest person. –MT

Spirituality usually refers to a belief in something beyond what can be seen. Nowadays, when defining oneself as “spiritual but not religious,” it usually means the person believes in some spiritual force and the power of connections with others yet doesn’t observe any particular religion.

From this experience, my perspective is that God, or a God-like being is all around us. A good feeling. –GM

I have become more spiritual over the past five years. –RZ

I had some unusual experiences that reinforce my belief that there is an energy/power beyond our earthly existence. When I was in the hospital, I felt a presence on the right side of my bed that I can only describe as angelic. Its presence gave me a sense of comfort and that I wasn’t alone. –CS

Faith was not that important to me during my treatment, but I know that all my friends and family prayed for me to live. It made me realize prayer is helpful and that you don’t have to pray to God. You can pray to comfort yourself. –LR

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Featured image courtesy of ELG21 on Pixabay.