Those diagnosed with any form of cancer immediately are thrust into a world known as “the new normal.”
It is anything but normal.
“The new abnormal” would be a better name.
Normal will never happen again for me. My reality of attempting some form of normal for the last seven years doesn’t mean life is normal for me. It means I’ve learned how to exist in crazy. Maybe I should refer to present-day life as my old crazy because I’ve existed this way for so long. The new normal phrase has always rubbed me the wrong way because normal was ripped away and replaced with nothing of the sort.
Is calling what I do the new normal supposed to somehow make me feel normal? It doesn’t. Instead, it makes me feel like I can’t even do the new normal normally. Is it meant to make me or others feel better? It doesn’t make me feel better. I’m not sure if it makes others feel better. It potentially minimalizes what I do in the eyes of others. It invalidates my struggles in what really is abnormal because of the language that this is the norm.
The new abnormal is a topsy-turvy world of back and forth. It’s a world of opposites. I have felt wonderful and miserable.
I’ve gained and lost weight even though my level of exercise has remained about the same.
I’ve had my share of down days plagued with fatigue and others with more steroid induced energy than I know what to do with.
I’ve had no appetite and other times where I’ve eaten everything in sight.
Diarrhea. Constipation. One word sentences here are fine.
The medical world is a potpourri of repeating abnormalities. There are more one word or near one word sentences coming.
Labs. Office visits. Treatments. Side effects. Repeat.
Scans. Anxiety. Regrouping. Repeat.
I call insurance companies and billing departments far more often than is necessary. I rarely did when my life was supposedly normal.
I’ve gotten to feel at home with nausea. Ondansetron works well for me when it hits.
I’ve gotten to feel at home with many other drugs and supplements. I know what works for me and what doesn’t. I know my body well. I think I have finally broken through and convinced my team NOT to give me one particular drug used during MRIs that causes a worsening reaction. Every office visit begins with a review of my long list of medications.
How is any of that normal whether it’s the new routine or not?
In between all of this complete abnormalness are all the attempts to squeeze in any normal moments that are possible. ME time. I exercise and plan activities I enjoy that will keep me moving. Time with family and friends fill in normal moments. Football season has started. Go Badgers! Special occasions are sprinkled into my schedule when possible. There still is meaningful work that matters to me. Whereas my schedule had always been fairly rigid, I love the flexibility I now have. Being able to focus on purposeful work has been one part of my new abnormal that feels pretty close to my old normal.
The only constants are change and the need to live in the moment. Cancer has taught me lessons in change repeatedly. I am more present. It’s why I like #NotTodayCancer so well because I can be pretty definite about certain things as I go through my day.
The new normal is not the right term for how I live. Life is abnormal. Calling my life permanently abnormal is the best fit.
I ran into a friend of a friend a little over a week ago that I haven’t seen in a long time at a local restaurant. One of the things Laurel and I have in common is that we have both lost people we’ve loved due to cancer (my mother and her husband). She was with a group of about six or seven others. There was nothing remarkable about anyone’s appearance. Everyone looked normal. I stopped by her table for a quick hello as I left the restaurant and learned she was eating with her grief group from hospice. Her husband died around three years ago and although they do not meet formally as a group anymore, she explained they still get together every so often to check in on how everyone is doing.
“So, how are you doing?” I asked her.
“I’m vertical,” she told me.
She looked great. I know. Even though I heard it in my head, it was my first reaction. Looking great has nothing to do with how a person is feeling. I even used the word “normal” above to describe her.
I was thankful I hadn’t said it out loud. I know so well that someone can look like they have it all together on the outside when the inside is a hot mess. This is true whether the inside is slammed with treatment side effects, pain from sickness, anxiety, depression, or grief. The inside often is in some state of constant churning. It may be such a present feeling that it is normal for you. Normal always fluctuates for me and has an overpowering element of uncertainty of the future. Normal has to be rooted in the NOW. I’m good at holding it together on the outside. Most of the time.
Grief is messy.
Being vertical shouldn’t be so hard. But it can be.
There is something comforting about being with others who have similar experiences. Support groups are great for this if it fits your comfort level. I went to one after my mom died. It was more of a workshop setting. It gave me a better understanding of my feelings and explained a few things that I wouldn’t otherwise have attributed to grief. Individual counseling is another option to support someone through grief.
Running into Laurel made me pause to revisit what I’ve learned about grief over the years. I reminded myself of many points worth remembering.
Grief is physically and emotionally exhausting. A grieving person needs more restorative sleep.
Grief is hard. It’s tougher to make decisions and trust others, including trusting your own abilities while grieving.
Many question truths in their personal belief systems such as religious beliefs, the meaning of life, and ideas of fairness.
There is a sense of having no control over anything.
Grief is distracting. Functioning in day-to-day activities or at work can be affected. There is a tendency to forget things.
Some people may bump into things, drop stuff, or be prone to accidents. They do not attribute these events to grief and wonder what in the world is wrong with them.
Some people find it easier to be at work and like having a focus away from grief, while others find it difficult to be in their work environment. Some who find an escape from grief at work find that it overwhelms them again as soon as they get home where the memories live.
Dates such as birthdays, anniversaries, holidays, and other important events will be bittersweet. The anniversary of a death will be dreaded and the day after will feel better again because there is a whole year before it happens again.
Grief is real and ongoing. A person doesn’t just get over it. The goal isn’t to get over a loss but to find a way to get through it.
People grieve losses other than death. Loss of jobs, a move, divorce, a friendship or relationship, failed plans, and changes in health are all sources of grief.
It doesn’t mean someone is over their grief if they are having a good day. They may just be getting through the day vertically.
Grief spurts come out of nowhere. They may not last long but can be intense.
There is no timeline. There are as many ways to grieve as there are people. What works for one person may not work for another.
Grief can teach us about life.
I find a lot of strength in affirmations. I’ve read and collected many, blended them together, and written my own when I have a specific need. I have close to one hundred in my affirmation file and I’m always coming up with more. Here is my group of affirmations on grief. Perhaps one or two will jump out as applicable to a situation in your life.
Affirmations That Acknowledge Grief
I allow myself to fully feel my feelings, both happy and sad.
I can still feel love in the world without my loved one.
I seek the help I need and accept help when it’s offered.
I hold on to love and will let go of the grief when I’m ready.
I am surrounded by seen and unseen love and support.
I am kind to myself while I grieve and heal.
I honor my lost loved one by living my own life in positive and beautiful ways.
I move away from memories that bring me pain and focus on memories that bring me happiness and peace.
Grieving is a part of life and I am doing okay.
There are many feelings involved with grief and loss and it’s okay to feel all of them.
I still feel my lost loved one’s presence and it comforts me.
I grieve loss in healthy ways that are right for me.
There is no timeline for when grieving is done.
Grieving ebbs and flows differently for everyone.
I recognize difficult moments and know they will pass.
I choose to grieve my loss and move forward at my own pace.
It is okay to feel happy again.
Moving on with my life does not mean I have forgotten someone I loved.
I am grateful for the time I shared with my loved one.
This experience has allowed me to discover new truths about myself.
I am done being sad for today and I move on to other emotions.
My life has changed and I will meet these changes day by day.
There are many people I can talk to who will listen to how I’m feeling.
I feel supported during this difficult time.
I am learning how life works for me with these new circumstances.
After I’ve given all this unsolicited advice, I think it’s also important to avoid offering easy answers or clichéd expressions to someone who is grieving. As an example, I often hear people say God needed another angel when someone has died. It’s meant to be comforting. I don’t believe this. Heaven has enough angels. Keeping people around longer on Earth that spread goodness seems like a better idea to me. We need those people to stick around. Someone who is grieving needs to feel listened to and feel comfortable enough to cry and express their feelings with the support of their friends. Telling someone how they should be feeling or dismissing their feelings with some tired or cute remark invalidates grief.
I have grieved my parents and other family members, friends, neighbors, and people I have never personally met who have died from cancer. I don’t think I’ll ever be done grieving some deaths, and that’s okay. It’s there. I can still be happy. I’ve grieved a child and an unfulfilled dream when cancer put a screeching halt on plans to become an adoptive parent. I’ve grieved relationships that have changed. I’ve grieved my teaching career when it became clear it was in my best interest to retire. I’ve grieved my past because I can’t reclaim my life and health to what it was before cancer. I’ve grieved my present because of disappointment and anger and changes that still don’t fit my plans. I continue to grieve my future because of fears. Although it isn’t what this post is about, I also have hope for my future and I will not let go of my hope.
There are many parts of myself that I grieve. I choose to keep many of those thoughts private for now. It’s my work to do, difficult to share, and very hard for me to put into words.
Grief is universal but everyone does it differently. There is no one right way to do it, but it needs to happen in its own time and in its own way. I don’t want to forget my loved ones who have died. I do want to quiet memories that haunt me. I do want to remember all the happy times I’ve shared with people who’ve died.
Laurel is incorporating grief into her life as she keeps living and moving forward. Looking fine on the outside doesn’t tell the whole story. It seldom does. I hope I can meet people with compassion and empathy to offer whatever support is needed.
Three affirmations from my list jump out at me as I write today:
I honor my lost loved one by living my own life in positive and beautiful ways.
Moving on with my life does not mean I have forgotten someone I loved.
My life has changed and I will meet these changes day by day.
Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Writing is a way to self-reflect, express my beliefs, and share my voice with others. Tara Parker-Pope wrote an article in The New York Times titled Writing Your Way to Happiness. One path to happiness is through writing a personal story.
The goal is to create an “optimistic cycle that reinforces itself.” She explains that although our inner voice is choosing the words as we write, we can go back and edit our story. For example, I may choose to write a story about a session with my trainer, or planting morning glory seeds, or being kept awake by a thunderstorm. Rewriting it can bring about behavioral changes, improve happiness, and lead to better health.
Bringing about behavioral changes, improving happiness, and working toward better health are all important to me as someone trying to live well with cancer. I’ve written quite a bit about the progress I’ve made with my trainer. Through the rewriting process, I discovered how negative self-talk hinders me in my training sessions and then I made some changes. Maybe I’ll write a story about morning glories and understand why they make me so happy. Writing about sleepless nights during bad weather may motivate me to sleep in my basement where I can’t hear anything which in turn makes me feel a lot better the next day.
Stories lead us to better understand ourselves.
For anyone interested in journaling specifically about health, consider the following prompts:
What changes do I want to make in my behavior? Why do I want these changes? What is it I am hoping to gain? What is my plan? How can I take the first step?
What things make me happy from the inside out?
What small goals do I have that can lead to better health?
Or write a story about morning glories or something you think is entirely irrelevant to your health. After it’s written, you can look for possible connections that you didn’t see at first.
Timothy Wilson has researched writing as a way to change core narratives successfully and calls the process “story-editing.” His background is in social psychology and focuses on self-knowledge and behavior. I recommend one of his books, Redirect: Changing the Stories We Live By, for further reading if interested. He sees writing as a pathway to bring about change. A writer writes for about twenty minutes a night for three to four nights, and each night goes back to edit the narrative. The outcome is that a more honest narrative is written through reflection on consecutive nights.
It’s an enlightening process.
Try it out: Think of a recent situation where you felt some anger.
Anger is a wonderful feeling to use for this exercise because you have automatic conflict.
On the first night, just write a very brief account to get the bare bones of the event written. It’s nothing fancy. Focus on your feelings another night and how to convey those through descriptions or specific actions. Add dialogue another night. Or just see where the writing takes you each night. You really don’t need a plan if you don’t want one. Just write.
Sometimes I wind up with an entirely different piece of writing than when I started.
I see writing your way to happiness as much more of a “revisioning” of a core narrative than editing, especially where endings are concerned. Revising involves bigger changes. Some parts stay, some go. Ideas are expanded. You try things out and see if they work. In Wilson’s book, one of his exercises is called “The Best Possible Selves.” He asks a writer to imagine his or her life twenty years from now and write about how everything has gone as well as it possibly could. Details about how the events of things happened are to be included, as well as meaning, hope, and purpose. Again, writing for twenty minutes a night for three to four nights is part of the directions. It gives your subconscious time to ruminate and work through whatever needs more thought so you can make more progress the following night. I think this is the same reason you are asked to write in the evening.
The part about including details about how future events happened is important. Being specific helps you form a picture in your mind of what you want. It makes a picture with words. Adding meaning, hope, and purpose also makes your vision super clear. Clarity in meaning and purpose makes what you want more probable.
I can tell you in my version I am completely healthy, retired, and enjoying every day doing the things I love. Writing sets a powerful intention more than thoughts or spoken words. It involves being really clear on what you want and organizing your words in the best possible way to express your specific intentions. I found that reading what I wrote out loud to someone after I completed the exercise also very revealing because my soul really responded to the core beliefs that I hold the dearest about my future as I put it all out there to the universe. Writing your way to happiness is one positive affirmation after another.
Writing something down tells your brain that your ideas, thoughts, and goals are important.
Writing engages us with our thoughts and helps us process emotions. It makes those thoughts concrete. It prepares those thoughts for becoming actions. Writing really serves as a blueprint or map for all that unchartered emotional and mental territory. Regular journal writing about feelings or uncomfortable events can help lower anxiety and help a person sleep better.
In the world of living well with cancer, I have both read and written. I am still learning how to write what I know and believe about cancer.
This is how I break down words about cancer:
Medical journals/scientific articles on cancer findings/advancements. I’ve avoided reading many of these articles and journals as they aren’t written for patients. Once it was suggested I read one per month, but I found them confusing. Or upsetting. Or not applicable.
Test results also can be confusing (or upsetting, or have unclear applications), however, these are much more important to understand because they affect the patient intimately.
A personal health journal to document the factual side of a cancer diagnosis. Surgeries, treatments, radiation, medications, side effects, tests, appointments, and schedules fall into this category.
Diaries/journal writing from survivors, thrivers, lifers, however a person best identifies. There are narratives filled with tips. Some write about living with cancer. Some write about beating cancer. Some write about dying from cancer.
Fictional stories where characters have cancer. They read differently than biographical accounts but contain many of the same sentiments of life and/or death. Some hit the mark – others do not.
Advocacy writing that argues for better research and treatments for later stage cancer patients. In my opinion, the world needs more of this kind of writing. People focus on the wrong drivers of “awareness” or accuse women and men of being “negative” if they write about the hard, scary, and ugly parts of cancer. Change will come through advocacy. Current widespread attitudes need to be challenged.
Celebrities sharing their “I never let cancer get the best of me” stories. How courageous . . . and . . . inspiring? I think it’s just ducky if they never experienced one moment of fear, doubt, or anger. If you can’t tell, I don’t believe them. I would be more impressed if they used their platform in the public eye (that is much more far-reaching than mine) to put a mark on metastatic breast cancer that can’t be ignored or dismissed. It makes me sad. I feel like they don’t understand. Maybe they can wear pink and that will make it all better.
Private writing reflecting on some of the questions above or your own.
A few write blogs. 😉
Am I missing any?
Writing forces a person to process a pesky thought that has been floating about unrecognized or undefined. Once on paper (or the computer), it lets you see what you were thinking or feeling. If it isn’t quite right, you revise until your inner voice has spoken.
I end this post how I began it: Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Sanoviv Medical Institute is situated on the Baja Peninsula in Rosarito, Mexico. It’s built on a cliff looking out at the Pacific Ocean. Every day seems sunny. A lulling symphony of rolling and crashing waves repeats itself over and over. It’s a small hospital that specializes in functional medicine and both integrative and alternative treatments. Many guests visit for a health retreat. A smaller group of guests are patients with more serious health conditions. Research there focuses on how immunity can be supported at the cellular level in fighting disease and optimizing one’s best health. The physical, mind, and spirit are all important components of a healthy individual.
I left Wisconsin for Sanoviv almost as soon as my school year ended in 2016. My goals included strengthening my immunity, detoxing my body, and learning more successful ways to deal with stress. I was open to hearing what they recommended in terms of treating cancer. My oncologist at home was curious and doubted anything would interfere with my current protocol. I wouldn’t be missing any treatments at home by going. Neuropathy had taken a toll on my poor feet. I was also suffering from painful hand-foot syndrome. Of particular interest to me were the options for treating disease from a cellular level after disease had already happened. I signed up for a three-week cancer support program. If nothing else, I was off to Mexico in an idyllic setting and getting away from my life at home. It was even better if my health improved.
There are many moments from that trip etched away both in my memories and in a book that exists in a forever state of revision. I met people from as far away as Nigeria, Australia, and China, and as close to home as Chicago. My days were scheduled from 6 AM to about 7 PM. Some of it was not pleasant, but many parts of it were filled with beauty, purpose, and deep lessons. What I want to share briefly are my memories of the pelicans.
Pelicans flew along the coastline daily. I had never held any affection for these birds. I thought them big, ugly, and dirty looking. If a bird could be fishy, pelicans were fishy as well. My opinion transformed at Sanoviv watching these strong and graceful birds. I admired how they would pass by in single file while floating on an air current. It was like each bird was connected to another with an invisible string. They reminded me of bikers drafting behind a lead bike so as to block the wind and use less energy, an idea which bikers got from birds no less. At other times the pelicans arranged themselves in groups of four like in fighter jet formation. Wings tucked in for increased speed, yet they still managed to stay in unison with each other. These birds had an unspoken quiet beauty no matter how I saw them.
I had a very special pelican sighting on my last full day. I was sitting up in a special care area receiving IVs, looking out at the ocean in a bit of a daze, lost in thought. Far out on the hazy horizon, I saw a somewhat shapeless form. I wondered if they were pelicans, but they were too far away. Whatever it was resembled the v-shaped way a child draws birds flying in pictures. As the shapeless form drew closer, it moved off to the left and changed shaped, now reminding me more of a swarm of bees. From where I sat, I temporarily lost sight of the changing shape and figured that was the end of it.
But it was not. The shape was a small group of about four or five pelicans who were just hugging the coastline. Soon enough, they came back into view and flew by my window in a single file in one long, continuous silent flow. It was as if the pelicans were saying goodbye and purposely saluting me with their waving wings. It was a beautiful and peaceful moment that I will never forget.
Here is one of those perfect times where everything fits together magically. In the animal spirit world, pelicans symbolize regeneration and resourcefulness. I was at Sanoviv to heal and re-energize. The pelican population had dwindled in the past but presently has bounced back. Pelicans also represent resilience and determination. My spirit is filled with this same resilience and determination. My mindset is of one determined path just like the single line of the pelicans’ flight. A greater force was absolutely at work in bringing pelicans to me day after day after day. Signs are always there. I don’t believe it’s all a coincidence.
I didn’t get all the answers I wanted at Sanoviv. I arrived home feeling healthier than I had in a long time. My energy was better, my cholesterol was lower, and I felt happy. New scans were scheduled at home. These showed that returning to a more traditional form of chemotherapy was in my best interests. I would have had the same results if my scans had been scheduled before I went to Mexico. It’s interesting that one of the things I’m currently receiving today is what they suggested as my best option almost three years ago. The drug was not being used in the U.S. in exactly the same capacity as in Mexico, so I got a big fat NO from my oncologist at home. It was an FDA thing. Now it’s FDA approved.
I quickly made decisions and turned my life upside-down once more. Nothing was how I wanted it. Very little seemed the same. Life looks very different to me now. I have been resourceful, resilient, and determined, just like the pelican. Where everything isn’t perfect, I am still here. I am finding a way.
Lessons of resourcefulness, resilience, and determination are important for all of us. We all have stories where life hasn’t turned out as we planned. Many events are outside our control. We almost always think we have more control over events than we actually do. How we respond when life becomes hard is important. There is always a choice to respond positively or negatively. We all have opportunities to adapt, regroup, and come back to either try again or go in a new direction. We rest and give it another go, approaching challenges from new angles and perspectives. We all have more grit, strength, and determination than we think we do.
We are an awful lot like pelicans.
Many times we glide with grace.
Other times we need to be in fighter jet formation.
When have you needed to depend on resourcefulness, resilience, and determination?
Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.
He is leaving the UW health system.
He is moving to Florida.
He said he had to go.
What does that even mean?
I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.
He is a GOOD DOCTOR. The best.
I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.
Whatever the reason, I am losing my oncologist.
I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.
My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.
He’s gone to bat for me on more than one occasion.
He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.
He suggested supplements that have helped me feel healthy and strong.
He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.
My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.
Where do I go from here?
I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.
I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.
Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.
The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.
My oncologist needs to be:
Personable yet professional
Up to date on current research and new treatments
A lot like my current oncologist 🙂
My oncologist must:
Have a breast cancer specialty
Keep a very close eye on me
Advocate for me
Remember I am a person and not just a patient
Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).
Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.
I am confident I will find the right fit.
Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.
It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.
I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.
What helps you when you need to make a difficult transition?
What qualities or characteristics do you look for in your doctor?
Summer arrived right on time. Last weekend brought a picture perfect day. Little clouds scattered themselves across the blue sky. Green leaves danced on tree branches, delighted with the sunshine. Green grass swayed in the warm breeze. Frogs on the ground sang to one another but still went unseen. Birds called out to each other from branches with their song. Everything was fully alive again.
I went for a hike in Pheasant Branch Conservancy.
I enjoy hiking there for many reasons. Sometimes I enjoy the shade and protection of the trees in woodland areas. When phlox blooms, it can almost completely cover some places in shades of purple and white glory. Other parts are wide-open prairie. The watershed is of particular interest to people and wildlife alike. The area even has geothermal springs.
I love the hill the most. It offers unparalleled views of the watershed as well as of the Capitol building in the distance. It’s never crowded. After the climb and I’m on top looking out at the conservancy wetlands, I take a well-deserved rest for a few moments. I’ve even done warrior pose on the lookout platform to remind myself of my strength and celebrate my accomplishment.
The path leading to the top had been closed earlier in spring because it was too wet to have people hiking it. My understanding was there was a mix of safety concerns for walkers and also concerns to protect the trail from damage caused by people stomping all over it before it had hardened from the spring thaw.
My hike last weekend held challenges for me. I didn’t know if the hill path was going to be accessible or not, so I parked my car farther away so I could do a long quality walk if it wasn’t open. My hike wound up being a little longer than I wanted and I got hotter than I hoped. I don’t function well when I overheat. I was warm from the start but I refused to wimp out on the first truly warm day when there would be months of summer heat ahead of me. I enthusiastically convinced myself this was conditioning and I could do it.
I could do it, albeit not very enthusiastically or convincingly.
I discovered the hill path was open and thought I could manage it. I wanted to make it to the top. It’s never been terribly steep or long. However, my walk was plenty long already not including the hill. The ground was still muddy from recent rain in a few spots. There always are uneven parts and I need to watch my footing. I had about five minutes or less left to reach the top when I decided I should turn around and make sure I had ample energy to get back to my car. A tinge of disappointment tugged at my heart, but I know my body well. It was time to head back. I knew I would come back soon.
On my trek down, I met a man going up. He was about my age, give or take a few years. He hiked on crutches. He wore a boot on his left foot like you’d see on someone who had had surgery or had injured his foot. A smile on his face exuded cheer.
I didn’t need to see this man. Or maybe I did.
Crutch Man was obviously fit and strong. I was amazed by how steady he appeared. The nearest parking lot was already a good distance away to have traveled on crutches. Here he was taking on a climb. I marveled at his confidence. I wanted the kind of will power he possessed. It appeared like this hill was no big deal to him. It was too big of a deal for me to push myself with two strong legs and on two feet. The image of him accomplishing something that I wasn’t doing stuck with me for the rest of my walk. It stuck around for the rest of the day.
I felt I had invisible crutches.
How did he manage? What kind of mindset did he have? How could I get it? What was the lesson for me to learn?
Crutch Man, if you’re by chance reading this, I’d love to talk and ask you these questions directly.
What’s easy for one person is challenging for another and vice versa. I imagine I do (or have done) things that others can’t fathom. Teaching a room full of second graders could fall into that category. Living well with cancer could be another. I deal with a lot of medical stuff. I travel on my own. I support myself. We all have something.
Crutches are there to support you while you need help, not keep you less mobile indefinitely. Someone wouldn’t use physical crutches longer than what was needed. Invisible crutches are often used longer than necessary. They are comfortable and safe. They can’t be seen so the owner may not fully realize they are even using them. They are that little voice that nags we better not do “x” for any number of excuses but most of all because then there would be no use for the crutches anymore.
What are other names for invisible crutches people have that are harmful rather than helpful?
There is fear of being hurt, physically or emotionally. There is fear of rejection. Fear of failure is a big one. Failures only keep us from success if we don’t try again. Fear of change is another possibility.
Getting rid of this invisible crutch lets you live more boldly. What if you don’t meet a goal on the first try? So what? I see two possibilities. You try again or move on. What if everything does go as hoped? Wonderful! Do not fear success. Abandon worries and enjoy your moment in the sun.
Comparison is an invisible crutch if you compare yourself unfavorably to a colleague at work, another’s diagnosis, progress, another relationship, or some type of success that you haven’t experienced. There seldom is enough information to make a valid comparison. Why do we do this? I know I’m not the only one. Getting to the top of the hill may have been a goal of Crutch Man’s for some time. Perhaps he had been chunking together small successes for months. Maybe he is part bionic. I have no idea. I don’t know his story. The story I initially told myself was he was better than me and I must be a loser. He very well could have been more capable than me at that moment, but I am definitely NOT a loser.
I know I can hike the hill. I just can’t hike the hill, include a long walk, and do a little gardening all on one hot day (which is what I tried). People are always comparing themselves to others with results that usually find they don’t measure up. I need to stop. Who’s with me? The only thing I need to compare myself to is my own progress. Even then it’s silly because comparing myself to the “me” of my past doesn’t help with the “me” of my present.
Live in the now and forget about comparing.
Limiting beliefs and negative self-talk get you nowhere. They may cause regression. If you think you can’t do something, you probably can’t. If you think small, you may be successful but you might not fulfill your potential.
If you think you can, you may very well succeed. If not, you will learn something that will help you move toward your goal. A positive mindset propels you toward success. An “I can” attitude goes a long way, even if you aren’t entirely sure. How I see myself as a success or failure is part of my identity. I choose to see myself as a winner.
A few of those limiting beliefs may be opinions others have thrust upon you. I have gotten a lot better at not listening to these, but one creeps in every once in a while. Then it’s harder to give it the boot. I was told earlier this week I couldn’t do something. I did it.
Focus on those around you who are supportive. These helpers are not crutches. They are the ones who teach you to fish rather than give you fish. They teach you how to do something rather than do it for you. They encourage instead of criticize. They pick you up, dust you off after you fall, and tell you to keep trying.
Sometimes an invisible crutch is that everything is just fine. Nothing needs to change. Why push to hike a hill when flatlands are much easier? Why make life harder? Life is plenty hard already.
True, but without the hill, I don’t get the panoramic view. I don’t get to be where Native Americans chose as a location for burial grounds long ago. I don’t get the feeling of satisfaction I get from many things when I don’t do the work. Being at the top is worth the effort. The view is worth the work.
Crutch Man wasn’t there to show me up and make me feel sad about turning back early. I may not have encountered him at all had I kept going and looped around the top of the hill before heading back down.
I was supposed to see him.
He reminded me I am stronger than I think I am.
Sometimes I forget.
He was there to show me if he could do it, so could I.
Patient and Family Advisory Councils connect patients and family members with employees in the healthcare system. Members provide input on how to improve the patient and family experience in a specific area. PFAC is the shortened name for these groups. Patients and family members who have been caregivers for patients are called PFAs.
PFACs are a way for providers to gain viewpoints from the perspectives of those on the receiving end of care. Participating in patient and family advisory committees gives patients and family members the opportunity to become advocates for their own health care and that of others. It is also an opportunity to give back and stay involved in the health community.
I joined a PFAC oncological group in the spring of 2015. It focuses on any aspect of oncology and welcomes participants who have been affected by any kind of cancer as a patient or family member who has received care in the UW Health system. My understanding of what happens on more of a business level of health care has been deepened. Surveys are often used to gather and then aggregate information from PFAC members ahead of scheduled meetings. I have completed many. There usually is a guest presenter on a topic.
Truthfully, I often feel as though final decisions have already been made and the purpose of patient/family input is simply to agree with what is being presented. As a result, I often feel somewhat disagreeable when I say something different from what I think they want to hear. Yet, I’m not there to make them feel good and/or validate their work. I’m there to offer my honest feedback and to advocate for the best patient-centered care possible. I’ve also gleaned a few insights into possible options from which I could benefit. Those are added benefits to my participation.
I am one of two members in my group who receives care at a building outside of the hospital that offers cancer treatment in a smaller setting. I find smaller is much more personalized and this is the right choice for me. I am also the only member of the ENTIRE group who is under current treatment. It strikes me as odd. I would think there would be a higher need to recruit current patients for input when it’s THEIR CARE being discussed. My status gives me a unique perspective where I can lend my voice to what I currently experience and my observations.
I thought some readers might be interested in some of the topics we’ve discussed over the past four years. I do not feel I am violating any privacy policies by sharing in general terms. I will not refer to anyone by name. My purpose is to provide a glimpse into the world of Patient and Family Advisory Councils. Sure, I have some opinions and they are mine to share. I am confident you’ll know those when you read them.
The following are a few of the PFAC topics that have been discussed:
A speaker was brought in to present information with an accompanying PowerPoint. The presentation on clinical trials was largely informative. Time was spent providing feedback on the cancer center’s website dedicated to trials. Feedback was solicited on how to raise awareness of and participation in clinical trials, and discuss reasons why patients may not choose to be involved in them.
I perceived the hospital perspective was that patients often do not want to be involved in trials. I believe there are reasons that validate that perception. Personally, I would not choose to be involved in one if I may be in a group that is not receiving the strongest medicine available as compared to another group. It’s too big of a risk for me. Many trials are changing so all patients in a trial receive the drug being tested. If patients understand that, then participation may rise.
Trials have also become very specific because of targeted treatments. Often times, it’s the trial sponsors who have restrictions that exclude interested patients because patients do not fit a sponsor’s requirements for the ideal sick patient. Patients are too sick, not sick enough, or something else. Patients would like the opportunity to participate (and potentially greatly benefit), but they are told they cannot. In the end, it’s the sponsor rejecting the patient, not the other way around.
One evening, oncological pharmacists presented information on why patients wait so long for their chemotherapy drugs. There have been days I’ve waited three hours from the time after an office visit until my drug drips into my body. It takes considerable time to make chemotherapy for an infusion. Pharmacists can’t make it until the oncologist has released the order for it. This is dependent on the patient’s office visit and dictated by results from labs looking at blood counts and metabolic functions. Kidney function, white cell counts, liver enzymes, and other numbers or functions out of kilter could delay or cancel a treatment. Each drug is made specifically for a patient. Dosing is specific to a patient’s needs and once made it can’t be used on another patient if the intended patient is unable to use it. It expires after about twenty-four hours. Money is lost if it goes unused. My blood boils a bit at this economic consequence because in my world patient care outranks profit every single time. Hiring more pharmacists would lessen the time a patient has to wait. Patients would get what they need more quickly. An on-site facility to make the chemo would be helpful, but apparently this isn’t deemed essential. Again, financial factors are at the root of these decisions. My blood pressure can only climb because of them. Don’t mind me, I’m just a patient.
On another evening, a presenter gave an overview of genetic counseling and progress in identifying genetic markers that increase a person’s cancer risk.
The benefits of DNA banking were shared. I was somewhat unimpressed as it seemed the biggest benefit would be to the company providing this service. DNA banking is an option available outside of genetic counseling. Many questions float around in my head concerning how my DNA would be used.
At first, this didn’t seem like a terribly pressing topic, certainly not one to take an entire PFAC meeting to discuss. But it did.
The chemotherapy managers and oncology directors were gathering input on which patients needed to be seen by oncologists and which patients could be seen more routinely by nurse practitioners. Who was considered urgent? I get good information and a slightly different perspective when I see my nurse practitioner, however, I will always prefer to see my oncologist over her. He has more expertise.
Other members in the group nodded their heads and quickly agreed that this was a great idea to see a nurse practitioner more frequently. It isn’t from my perspective. This is where my situation as a current patient is so important. Doesn’t every cancer patient think his or her care is urgent? I am just as urgent and as important as another patient. It seemed to me like some patients were being labeled as more valued than others. The thought was perhaps patients who were further out post-treatment could be seen by a nurse practitioner if they only came in once a year. Well, no, these patients need to be seen by an oncologist, too. Recurrence happens even when patients have passed a five-year cancer-free benchmark. I’ll say it again: the oncologist has more expertise. A nurse practitioner may miss something that an oncologist may notice.
New Clinic Design Planning
A new campus is being designed on the far-east side of Madison. An interior designer presented current design plans that were extremely comprehensive and detailed. I was impressed with what is being planned. The plans are patient-centered and inclusive to coordinate many aspects of care in one setting.
Input was sought after for any aspect of this clinic. I felt the designer presenting genuinely considered all comments were important whether they were about parking lot locations to what kind of treatment room options would be enjoyed or needed (open, semi-private, or private). I seemed like the lone voice expressing how important private treatment rooms were for patients. As a patient, I have intensely private discussions about my health with my treatment nurse while receiving treatment. I don’t want to share that information with others, nor do I want to hear their confidential conversations. HIPAA laws exist to protect patient health information. I expressed very strongly that privacy must be ensured in treatment areas. I was thankful someone agreed with me who had called in for the meeting. Even if privacy were not a concern, cancer patients have compromised immune systems and should not be sharing space with others or others’ family members who are sick and may or may not be showing symptoms of a virus.
The recommendation in my group is to serve in a PFAC group for five years and then make room for someone else. I don’t know how closely that guideline is followed; some members in the group have been there more than five years already. I do enjoy the other members who have been former patients or caregivers for family members. Everyone brings something different to the table. We volunteer our time because we feel we can make a difference. We all advocate for the same thing – the best care for patients.
Have you ever advocated for change in your health care or that of a family member? How? What happened?