Dear fellow traveler, it has been a while since I have last posted. And it may be a while before I resume posting again. I am on experimental therapy for a genetic degenerative disease. I remain hopeful that I will be able to resume. Until then, please follow me on social media. BIG hug to you from me!
I did a medical test. I think I am fine. It doesn’t really matter which test it was, because all tests, whether screening or surveillance, whether imaging or laboratory, have the same underlying shortcoming. None of them are perfect. There is the scientific side of medicine and then there is the artistic side. A health care provider uses research data, experience, judgment, wisdom, and intuition to interpret, diagnose, and create a treatment plan.
Cancer tests. Should I do them? If I do the tests, when do I do them? Before or after my vacation? Before or after a work deadline? Before or after the holidays? If you decide to submit to a test, beforehand, during, and after your mind can go down rabbit holes. If the results are not normal, you may be presented with further tests, which will lead to more questioning. If the results are normal, though, you often wonder, Can I believe the results?Are they truly normal? If you accept the encouraging results, it’s not long before you start wondering how long this peace of mind will last — an hour, a day, a week, a month?
We desire to know with certainty that we are clean and will stay clean forever — or at least until the next test. But having certainty about anything in life is an illusion, in particular for cancer survivors who live in fear of recurrence. We long so deeply for comfort and reassurance that we will be fine and will go on living, but nothing will ever give us the certainty that we are looking for.
As survivors we have to learn to become comfortable with a larger degree of uncertainty than we may have ever experienced before. That acceptance takes time, a lot of soul searching and perhaps talking with others. Every now and then your mind may wander through the mental door to the dark place. Rather than shutting this door with massive nails and locks, we should aim to be comfortable having this door open. This is easier said than done, asking our minds to not wander into the dark place too often and too far but just enough to briefly remind us of the grief and pain we have been through, to renew our sense of clarity, to not suppress fear, yet also not let it overwhelm us. In short, to find that sweet spot.
Giving in and allowing yourself to fret and think of the worst-case scenario, but only for a well-delineated period of time per day (perhaps 5, 10, or 15 minutes) will hopefully allow you to fill up the rest of your day with healthier coping mechanisms (such as altruism, suppression, transformation, and humor). There is a time for everything — a time to worry and a time to “Eat, Pray, Love“, as a famous writer once said. Try to find that dynamic balance that works best for you and your loved ones.
Many of my patients understandably wonder and ask, “Why did I get cancer?” I do not necessarily have a medical or scientific answer. I wonder if the question behind the question is, “Why me?” From that question comes others: “Why now? Can it happen again? What can I do to prevent that?”
There are certain risk factors that predispose one to cancer. These factors (including genetics, environment, and lifestyle) are also associated with poorer outcomes for certain patients. However, there is not always a cause-effect relationship.
My late mentor taught me a simple way to explain the different levels of cancer risk; it can also be applied to those who carry a cancer diagnosis. On the one end is the general population for whom gender/age appropriate cancer screening guidelines apply. On the other end are those whose families transmit the cancer gene. For this group, we have proactive and comprehensive approaches to try to decrease the risk. Lastly, is the in-between group whose cancer risk is unknown. These are people who have had one cancer diagnosis. This puts them at an undefined higher risk than the general population to get another cancer, but at lower risk than those who harbor the cancer gene. (Unfortunately, data is lacking for those “in-between” individuals, so we resort to general population guidelines).
Even though we are in the 21st century, nature and our bodies remain a mystery with many unknown variables. Sometimes we just really don’t know why cancer happens to you or why it happens when it does. Questions that probe the why are good, though. Our why questions reflect how we cope with our diagnosis and try to make sense of it. They indicate our curiosity to try to understand the mystery of life. This is healthy as long as we acknowledge that life’s mystery is one that likely won’t be unraveled entirely for another few generations, if ever.
A cancer diagnosis never comes at the right time. (If not now, when?) It can happen to anyone. (If not you, who?) As the current pandemic teaches us, we are not invincible or immortal. Life is not fair. Embrace your curiosity and let it empower you without letting it overwhelm you.
Recently, I heard a speaker discuss the concept of “horse racing” in context of an academic setting where one’s career progress depends on one’s ability to compete at the national and institutional levels for recognition of one’s worth and legacy (grants, papers). It struck me that the same concept happens to some degree in our society as a whole. We often find ourselves in an exhausting rat race where luck comes into play. We all strive for a delicate balance between fitting into society’s mold and standing out from the crowd. A certain degree of peer pressure is healthy, but no matter how hard we try, success is not a guarantee. Many factors are outside of our control.
A cancer diagnosis may impede one’s ability to perform and compete due to lack of time, energy, or motivation. Plus, cancer survivors may find themselves in an additional race with life that may lessen their sensitivity to judgment and societal pressures. This may have its own anxiety-inducing aspects, initially. At the end of the day though, the race is never completed. Sometimes we change our definition of success. At other times, we realize our goals are unrealistic or that there are bigger and better goals to achieve. Realizing it’s about the journey rather than the destination may provide comfort by allowing you to enjoy the here and now, rather than focusing on the past or future. In some strange way this may allow you to be less restless and conflicted and more able to listen to your inner voice which can guide you to find the peace and courage to serve a unique purpose in this world. Don’t be afraid to ask for support from loved ones or professionals while on this journey.
Once upon a time, I wished there were a magic wand that would:
Take all the pressures, stress, and worries away and allow me to be in peace.
Fix it all.
Make me feel invincible again.
Remove the dark cloud hanging over me, push away the fear of recurrence that was always in the back of my mind.
Prevent me from needing to see so many health care providers and do so many tests.
Make the simple things easy again, such as using my body to get around in life.
Allow me to be comfortable with my own body.
Enable me to keep up with work, family, friends.
Prevent me from asking, ”How do you know?” when people tell me that all will be fine and “Do I have a choice?” when people tell me to hang in there.
Make my medical bills disappear.
Remind me to go through life walking like a tortoise, with occasional little sprints like a hare.
Reduce my use of the words “I should” and make me less hard on myself.
Teach me to accept not having made the healing progress I was told to expect, rather than fighting it.
Help me grieve for my old me and find the new me.
Make me feel I belong and am accepted for who I am as a person, rather than for what I do professionally or what I cannot do emotionally and physically.
Even though there is no magic wand, I believe humans have magic powers. Over time, sometimes with the help from loved ones or professionals, we can find our “happily ever after”. It may not be in ways we imagined, but it may be more happiness than we would have found without having gone through cancer. It often takes hardship to be humble and appreciate the good.
Colon cancer screening guidelines have been updated to reflect the new advised starting age of 45. Katie Couric has televised one of her prior colonoscopies and provides logistical and practical guidance on this site.
Sometimes my life feels a bit complicated, like a chess game in which I’m always trying to anticipate and strategize. I guess everyone’s life is like this, but dealing with a chronic health issue adds another layer of complexity. If your health causes you to have less energy at the beginning of your day, if that energy is drained faster because your body is less fit and if you have extra tasks to take care of your health (e.g. doctor’s appointments, medical tests, paperwork for e.g. leave/disability/accommodations), life can become overwhelming. At times it may even feel like you’ve been checkmated!
It can sometimes feel like you can’t win. You take two steps forward and one back, or one step forward and two back. It may help to remember that life is a marathon, not a sprint. When you find yourself spinning your wheels without clear purpose, stop and breath. Be kind to yourself. Rest, sleep, watch a movie, anything to allow your brain and body to rest and gain a new perspective. We’re not the only ones who have a hard time making sense of life. Even though we live in the 21st century, the medical community still has a lot to learn about our bodies, this ‘black box’ in which many systems are closely balanced and interrelated.
The internal tension you may feel forcing you to ‘fight for your survival’ after you have faced a traumatizing diagnosis like cancer is (in most cases) a normal and healthy response. You may need to find ways to distract from your own thoughts and feelings and navigate your internal energy outwards into more productive channels. I have listed a few examples to get you inspired! Please note that I intentionally did not list exercise, sleep, and diet, since they can become more a source of stress than relief in cancer survivors. Also, I did not list much about relaxation techniques (e.g. yoga, meditation), because when you have so much inner energy boiled up, it may be quite difficult to relax. First try blowing off some steam by actively doing any of the following:
Invest time each week in creating a calendar that visually outlines your schedule. This may allow you to recognize conflicts and/or reorganize days that may prove to be rather hectic. Break tasks down into smaller steps and rank them by priority — in terms of what you need as well as what you want! Perhaps ask a loved one to help you plan your calendar so you can identify opportunities for them to support you or join you in social activities that you can both look forward to and enjoy. (Feel free – or better yet – I challenge you to make plans to spend a few hours together doing nothing!)
Absorb nature (even if you only sit) and allow all your senses to be stimulated. It can be a calming and humbling experience!
Distract yourself by getting a new hobby. (What were your favorite activities to lose yourself in when you were younger?)
Express your thoughts and feelings to yourself (e.g. by writing them down or typing them into your phone) or to others. Sometimes it may feel safer to express your worries to people you don’t love (such as a healthcare provider) since you may not want to hurt your loved ones with your worst thoughts/feelings.
Control is an illusion. Please allow yourself to accept the things that you cannot change, since fighting them only makes your life harder. Life is not only about the destination, but also about the journey. Please be kind to you along the way by acknowledging that no matter how hard you try, you cannot always win!
A review of publicly available apps for cancer survivors.
Live and Feel:
A fascinating movie (The Biggest Little Farm) tells the true story of a young couple who left Los Angeles to successfully start a farm for a barking rescue dog whom they had promised would never change families again. Enjoy going back to nature while you watch this!
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How has your week been? My highlight of the week is that I did something that I had promised myself I would never do. I gave in to a minimal and natural amount of highlighting to camouflage my more than average amount of gray hairs…and to my surprise, it boosted my feeling about myself more than I had anticipated! I even purchased a few hair accessories which helped me to feel human and feminine.
Sometimes our health struggles can make us feel less attractive or desirable. In fact, sometimes I feel crooked! Crooked, because I feel that my body must be broken since it developed cancer to begin with and then was further damaged by therapies. It may seem that cancer is the gift that keeps on giving in terms of nature and frequency — even though it may be hard to tell whether your medical issues developed due to your genes, environmental exposure, cancer treatments, etc. You may feel like your list of medical issues is never ending and continues to grow with late- and long-term effects. You’re probably tired of constantly going for testing and seeing doctors. (If you’re like me, your health care team has grown drastically.) Do you find yourself wondering when this will slow down, stop, or just normalize?
Some of you may be more like Tigger, trying to be proactive and on top of your health, while others may prefer to be more like Eeyore, forced to react when things hit him in the face. (Ignorance is bliss.) Both perspectives and anything in between are what make all of us different, unique, and human. As with everything in life though, it’s best to pursue moderation and avoid being on the extreme end of the spectrum which may lead to paralysis from anxiety or procrastination.
You’re only human. We all find our own illusionary balance in managing our medical issues. What works today, this week, or this month, may not work forever. The trick is to keep an eye on the big picture by remembering that you don’t live to go to the doctor, you go to the doctor to live! Your health may control many aspects of your life and at times may try (and succeed) in making your mind become your own worst enemy. Illness can bring you to a dark place of anger, sadness, and frustration. In that case I hope you will be open to getting professional help (yes, adding another provider) to help you grow through the rough spot to arrive at a better space where there is room for little joys, new memories, and the pursuit of meaningful activities, regardless of how small your world has become due to your health and the amount and severity of medical issues you are juggling. It’s the little things that matter and can bring a gorgeous smile on your loved one’s faces that will brighten your mind and warm your heart!
This balance will allow you to be more resilient when life throws yet another inevitable curveball! And remember that the opposite holds true. The darkness and rain allow you to be more appreciative and grateful of the sunny periods in your life. The good and bad go hand-in-hand, keeping us in line and life in perspective.
You may feel guilty that you are complaining while you should be grateful for being alive, but the cancer journey can be complicated and overwhelming. It may help if you make it simpler by breaking it down into smaller steps, asking your health care team members to prioritize your appointments and testing, and asking loved ones to help you schedule your appointments, as well as drive and accompany you so you can have some distraction while there. Perhaps you can combine a doctor’s visit with doing something that touches your soul or makes you smile, no matter how small!
Thank you for visiting me. Below I’ve included a few things to educate and entertain you. Remember, I share ‘extra treats’ if you follow me on Facebook, Instagram, Twitter, or Pinterest!
Learn and Think:
This week, since we are about to head into Breast Cancer Awareness Month, I would like to recommend a few resources that might help the women amongst us. (Sorry, men. However, parts of these books may be helpful to you who have women in your lives.)
The summer is passing quickly. Many of you are likely already starting to prepare for the next 6 months – health, school, work, family, house, car, travel, and the Holiday season….etc!
Life can feel like a never-ending whirlwind at times – pulling you in many different directions, leaving you to organize and streamline the chaos.
Having been told that you have cancer, one of life’s “worst case scenarios”, you may have, unconsciously, lost trust in your body or life, and started to be more ‘on guard’, ready for “the other shoe to drop” or deal with whatever or whenever the next ‘worst case scenario’ may be. You may also know this as the Fight-or-Flight response. But this response can go into overdrive at times, affecting all aspects of your life, even the routine ones. Perhaps you used to be a glass-half-full person, but now you may have become more of a glass-half-empty person.
I hope this writing will allow you to try to Stop-and-Think-First before you act, when you feel your body tensing up for a ‘fight’….(unless, of course, there truly is a life-or-death emergency, like a lion chasing you!).
Pause to get yourself e.g. a delicious meal, a good night’s rest, a meaningful conversation with a loved one, whatever it takes to regain a more neutral and realistic perspective….and then rethink your decision-making again….you may discover that your glass is neither half-full, nor half-empty…..it may actually be refillable, maybe even to the top….!
Life is not always fair….some people may have more suffering on their path than others….but some may also choose to keep their suffering more private….please don’t give up hope….and find “neighbors” who can help you carry your backpack!
Won’t you be my neighbor…please? Please…find below a few things for education and entertainment!
Learn and Think:
Certain breast implants have been in the news this week due to a FDA recall:
Based on the currently available information, our analysis demonstrates that the risk of breast implant associated lymphoma (BIA-ALCL) with Allergan BIOCELL textured implants is approximately 6 times the risk of BIA-ALCL with textured implants from other manufacturers marketing in the U.S.
At this time, the FDA does not recommend removal of these or other types of breast implants in patients who have no symptoms due to the low risk of developing BIA-ALCL. The FDA will continue to evaluate any new information and may, as a result, take action regarding other breast implants, if warranted. Source
If any questions or concerns, it may be best to contact your plastic surgeon.
Live and Feel:
Lately, I have become fascinated with Mr Rogers’ legacy, probably encouraged by the upcoming release of the Its a Beautiful Day movie in which Tom Hanks portrays Mr. Rogers. Mr. Rogers courageously displayed his own vulnerability/sensitivity and preached “love” to encourage “being”, acceptance, respect, confidence, and health. His award-winning messages and poetry are simple, yet deep, and just as helpful as they were 50 years ago, independent of your age! His thought-to-be-last video message to his grown-up fans gently encourages “the expression of feelings in ways that will bring healing”.
Fred Rogers once said:
“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” Source
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Great to see you have stopped by to check in – always appreciate the company! This weekend, my family (thank you!) assembled a few pieces of furniture….which inspired me to write about ‘patience’….!
When my patients express concern that their medical care is moving (too) slowly or their recovery is taking longer than expected or desired, I often ask them if they know why a patient is called ‘a patient’. Usually this results in an inquisitive, speechless gaze. The word patient is derived from Latin:
Adjective: Able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.
Noun: Person receiving or registered to receive medical treatment.
The precise meaning of the medical definition of patient continues to be inconsistent, likely as the medical field and society continue to evolve. As such, a renowned medical journal had even devoted an article in 1999 (!) to the discussion of the pros and cons of finding a new word for patient. The article’s conclusion was that the massive undertaking of changing the word ‘patient’ to something else (requiring it’s own research, implementation, and distribution efforts) is likely not worth the diversion of time, effort, and resources away from providing and innovating patient care.
The reason for your impatience may change over time:
Initially, when you are newly diagnosed (and undergo testing, await treatment plan decisions and insurance authorizations), being impatient may be a reflection of a fear of the unknown, lack of control, or feeling overwhelmed. Starting cancer therapy is usually the best remedy to provide some relief. But in the interim, it may help to know that only a few cancer types and situations represent a true medical urgency/emergency. Even though anyone would like to have their cancer treated as soon as humanly possible, for the majority of cancer diagnoses, it is more important to be strategic. The quality performance of a number of strategically selected and rapidly evolving imaging, laboratory, and pathological tests will facilitate informed decision-making and the creation of a personalized cancer treatment plan that aims to optimize benefit and minimize harm. Furthermore, it also may help to know that there are many official organizations that hold cancer centers accountable for administering cancer treatments in a timely manner (e.g. the Commission on Cancer in the USA).
Next, as you transition from the active treatment phase into the post-treatment phase, impatience may become more reflective of a frustration with the slow or incomplete recovery process, a need to gain more control over your life (and survival), or a desire to catch up on life that was abruptly put on hold for the cancer treatments. With respect to a frustration with delayed/incomplete recovery/healing, I would like to refer to a previous post on acceptance. The instinctive urge to catch up on lost time could be interpreted literally, since some cancer treatments can be really intense and prolonged. But it can also be interpreted figuratively: the cancer experience may have increased one’s awareness of their own mortality and ignited an urge to get certain things done ‘before time runs out’. It may help to know that your priorities will often change after a cancer diagnosis, allowing you to live closer to the essence of your life, catch up with (and perhaps even surpass) your pre-cancer trajectory!
Please try to be more patient with yourself…..this is not a sprint, but a marathon! And I sincerely hope you will feel comfortable enough to ask your health care providers for help, if you feel ‘your mind is becoming your worst enemy’ and leads to dysfunction. There is no need for shame or embarrassment in this current time and age. You are only human – everyone has a breaking point!
Together we stand strong! Please find below a few things for education and entertainment!
Learn and Think:
Health maintenance alert! The American Cancer Society recommends that most people – those at average risk – start regular colon cancer screening at 45. People with an increased risk may need to start screening before age 45. Please discuss this with your health care providers!
Live and Feel:
This non-profit organization, Action for Happiness, is devoted to making the world a happier place by providing various insightful tools and resources that promote the 10 essential keys to happier and more resilient living (for free or low cost).
The original Lion King movie from 1994 is one of my favorites. Its music and story themes (circle of life, the good prevails) resonate with me. [The Lion King 1 1/2 movie is hilarious, which tells the Lion King story from the perspective of Timon and Pumbaa]. This weekend the Lion King movie’s remake premiered – I didn’t get to see it yet – did you?! I love the Circle of Life song – click here for the video, see below for the lyrics!
From the day we arrive on the planet
There's more to see than can ever be seen
More to do than can ever be done
There's far too much to take in here
More to find than can ever be found
But the sun rolling high
Keeps great and small on the endless round
It's the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life
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As a cancer survivor, you may have lost trust in your body. When you notice things happening in your body, you may become concerned that it signals that your cancer has returned, or you have developed a new cancer or a treatment complication. You may turn to an internet search to research your symptoms, which may only further increase your level of concern and lack of sleep! You may not know when to reach out for help and which one of your multiple providers to call.
When educating my patients about the seemingly endless list of sign and symptoms of cancer recurrence, I prefer to avoid specifically identifying them. Instead, I advise my patients the following: if you should develop symptoms that are not acute (meaning life threatening or intense, i.e. a stroke, heart attack or an severe belly pain) and these non-acute symptoms last for one or two weeks, and these are either new symptoms or chronic ones that are different now, then it may be advisable to reach out to a provider whom you feel comfortable speaking with. Ideally, your cancer provider since they may be more skilled to evaluate whether it may or may not be related to cancer. This provider can advise you several things that usually translate to one of following messages:
This does not sound suspicious, please see your PCP for assessment and management.
This sounds a bit concerning. Why don’t we do some testing (like labs or scans) and have you come into the office to discuss the results.
Most commonly, you may be told that your symptom is real, but not yet specific enough to be diagnosed. In this case, you may be prescribed an empiric therapy such as medication to support your symptom(s) and be scheduled for a later reevaluation. Most commonly the symptom(s) will resolve and were therefore likely not related to cancer.
It is most important to remember that you are not alone! You are part of a team; you are the “monitor”, since you know best what is happening with your body. Your medical providers can help you make sense of your symptoms.