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Symptoms & Needs

Support for post-treatment symptoms and needs (emotional, physical, functional, financial)

Weight – Nature Therapy, Survivor Story

Weight – Nature Therapy, Survivor Story

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Dear co-traveler!

How have you been? I hope you were able to spend the Holiday weekend making new memories, doing the things you love (including doing ‘nothing’!?) with people who are meaningful to you. If you had to work, then I would like to thank you for your service – and wish you happy preparations for your next Holiday weekend!

This week, I will share a bit about my weight challenges. I know I am not the only one! As we age, maintaining and losing weight might become (much?!) more challenging than when we were younger. In addition, some cancer treatments can also lead to weight gain, directly or indirectly.

And that brings it back to me! I have gained quite a bit of weight in the aftermath and it seemed that my weight was only going up and up, seemingly independently of what I tried. I tell my patients general principles that I have shared with you before. Even though I am a physician who is supposed to know how to do this (“do as I say, not as I do!”), I realized there is still a lot I need to learn and I may need a little help!

Everyone is different, and so everyone needs to find the tools that work best for them and fit best with their personality/lifestyle. And that may take some trial-and-error efforts. In the current time and age, there are so many different help tools out there. I wish for you that, with patient persistence, you will gracefully find what works for you. But at the end of the day, motivation and ability are crucial.

In terms of motivation, the following proverb says it all: “You can lead a horse to water but you can’t make him drink”. You cannot force someone to accept an offer or opportunity. The timing has to be right and only you know when you are ready.

And last but not least one’s ability is crucial. Your motivation may be on target, but you may be hindered by factors such as your physical or financial abilities. Your body may not (yet?) allow you to move or eat the way you would like or even need to. We all have to find and accept that happy medium that is different for everyone and can vary over time.

For now, I think I have found strategies that seem to be able to help me turn the course, resulting in my child-like excitement (in sharp contrast to my family’s speechless response) when the scale showed a long-desired drop in weight, even if it was only 0.2 lbs! It’s the little things that matter – babysteps!

Please keep in mind the following key concepts:

Until the next time! In the mean time, please find below a few things for education and entertainment!

I create and maintain this platform on my own. Please help by nudging me if you encounter technical problems.

Learn and Think:

Live and Feel:

It’s the little things – Finances, Marijuana, and Symptom Reporting

It’s the little things – Finances, Marijuana, and Symptom Reporting

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Dear reader! How have you been?

I have been home alone this weekend. My boys are at an out-of-town baseball tournament. And even though I love them dearly, I am sure many of you can relate if I would share with you that it can also be really nice to be home alone. And being able to take the time to enjoy routine activities as well as to explore, e.g. by trying out a new grocery store, and then coincidentally discovering a new ice-cream place…..shaking things up a bit…..being fascinated by the little things…..stimulating the senses. Over the last few weeks my existence had shrunken down to the work and home environment – and so it felt really good to be able to be ‘out and about’ for a bit….expand my world….allowing the simple things to bring distraction and joy, just like in childhood!

Until the next time! In the mean time, please find below a few things for education and entertainment!

Learn and Think:

  • Cancer care is rather expensive and not always (fully) covered by insurance, resulting in 25% (1 out of 4!!!) of cancer survivors facing financial hardship. Therefore, it is encouraging to see that there is a government-led, bipartisan initiative, Cancer Survivors Caucus, that tries to improve care for cancer survivors!
  • You should feel comfortable to discuss any of your symptoms, no matter how seemingly small or innocent, with your health care provider to allow them to figure out why it is happening and if anything can be done to provide you with (partial or total) relief. And there is now evidence to support that those who self-report symptoms may live longer!
  • Medical marijuana is a trendy modality that you may have heard of or read about and wondered whether it is something you should try? Dispensaries are popping up everywhere. It often needs to be paid for out of pocket. It is not yet FDA approved – evidence is limited. Here are a few good articles (from the CURE Magazine and NIH) to allow you to decide for yourself. And as always, please discuss with your own providers first before pursuing a medical marijuana license.

Live and Feel:

  • Article: Saturday Night Life alum Vanessa Bayer reflects on her cancer journey that started in her teenage years.
  • Movie: I saw this movie recently (Cast Away). It reminded me of how random life can be at times. And how our inner strength can surprise us at times when it instinctively rises to brave life’s challenges. And lastly, how everyone needs someone…..even if it’s only Mr. Wilson!
  • Video clip: This bird was spending quite some time interacting with my car mirror. For me it symbolizes that “sometimes when we cannot go where we’d like to go, we may discover that we already are where we are supposed to be!”.
All Goes the Way It Should Go – Dementia, Metformin

All Goes the Way It Should Go – Dementia, Metformin

team-spirit-2447163Hello you! How have you been?

I am back online after a brief silence! I had to prioritize my time/energy for work and family, while dealing with and healing from an unexpected, sudden, and fixable health issue. All should be up and onwards now!

There is really never a good time to be sick. But we often cannot control its timing, forcing us to:

  • Initiate emergency contingency plans (for childcare etc.),
  • Ask for and accept help (at work and home),
  • Improvise, and then the hardest step of all, at least for me,
  • Let go, go with the flow, stop rushing things along, and trust that all will be what it will be. I reassure myself by reminding myself that everything goes the way it should go, whether I like it or not, whether I know the reason or not. And so, I try to accept and make the best of any situation.

Now, I have a refreshed appreciation for every day that I don’t need to visit the hospital, see a doctor, or am held back by health issues!

I am grateful for the loved ones, friends, and colleagues, who took time out of their lives to provide support (whether via text, phone, or in person). It takes a village to travel through life – together we stand strong!

Learn and Think:

  • Cancer Survivors May Have Lower Risk for Dementia. Cancer survivors may report post-treatment brain fog, which is a usually mild and transient cognitive impairment. As far as know this is not a precursor for the development of dementia. In contrast, researchers have found more evidence of a puzzling phenomenon: cancer survivors seem to be a bit protected against dementia.

Live and Feel:

“Life is short. I think that you find your own way. You have your own rules. You have your own understanding of yourself, and that’s what you’re going to count on. In the end, it’s what feels right to you. Not what your mother told you. Not what some actress told you. Not what anybody else told you, but the still, small voice. Beyond that, I don’t know. And it’s the not knowing that’s the good part. To me, mystery is the most beautiful thing—the fact that you can’t figure it out—that’s it for me. That’s for sure.”

Happy Weekend!

Happy Weekend!

Hello you!? What are you doing this weekend with the summer ahead of you?

I am trying out a new blog format in which I will share a few topics that may allow you to learn and feel! Let me know what you think!

Till the next time!

 

Learn and Think:

Does Cancer Battle Bring Personal Growth? Yes and No, Survivors Say “It’s normal for people to find meaning in their cancer experience while still acknowledging it as a terrible ordeal”.

How to Talk to Your Kids About Your Cancer Diagnosis. This short read with helpful advice from experts and a mom who’s been there twice may be helpful. There is no right or wrong way, as long as everyone feels loved and supported.

The cost of cancer: 25% of survivors face financial hardship report finds – CNN. Health care providers should ask patients in a respectful and nonjudgmental manner about their ability to afford their treatments – and if difficulties, then refer patients to local resources (e.g. navigators/social workers) or regional/national resources to receive advice and sometimes even grant support. Similarly, cancer survivors should not be embarrassed to tell their providers that they struggle financially. Awareness of the magnitude of patients’ financial hardship may urge policymakers to change legalization and health care coverage.

Live and Feel:

Happy video about a Dog Becomes a Sun Flower.

Beautiful video featuring a rare albino mantras ray.

 

National Cancer Survivors Day 2019!

National Cancer Survivors Day 2019!

Dear reader,

You may have missed it….but today was the annual National Cancer Survivors Day….

This day may have different meanings for different people….which is understandable, because all of our stories are different.

But, eventually, what may unite us all is our universal goal of trying to prioritize the creation of new memories and meaningful connections, every minute of every hour of every day, despite our responsibilities (related to e.g. work, home, health).

Love!

Cancer and Brain Fog

Cancer and Brain Fog

What:

It is common and frustrating for cancer survivors to experience a condition generally referred to as “brain fog.” Some people may notice difficulties with concentration, memory, and/or thinking. They may have a hard time reading a book; repeating the same paragraph over and over, or they may find themselves needing to jot down notes that will help trigger their memory. Thinking may be slower and less efficient leading to difficulties, especially when trying to multitask.

When:

While brain fog can manifest itself both during and after treatment, you may be surprised to learn that it can even start before actual cancer treatment begins. You may have heard the term “chemo-brain” but this reference is not quite accurate in its description since the clinical entity is often the result of a combination of many factors.

Why:

Researchers have found that this condition can be caused by many different factors: the tumor itself (through the secretion of circulating agents), lingering side effects of  sedation (from procedures), changes in medications, new levels of physical activity, changes in nutrition, sleep patterns, vitamin levels, hormonal changes, cancer treatments and the emotional roller coaster that all of these new stimuli bring about. People who may have been on the verge of developing sleep apnea, may find that weight gain leads to the development of full-blown sleep apnea, which results in less oxygen to the brain overnight, and then less brain function during the next day.

Work-up:

Dementia screening tests usually do not pick up any abnormalities, because this type of brain dysfunction tends to be more subtle. The most essential part of a work-up includes talking with a provider who will work with you to try to find out when the brain fog started, which symptoms you experience and if they change over time, and what else may be going on in your life that may be a contributing factor.  Sometimes your provider may order labs, brain imaging, or even neuropsychology testing. The more dysfunction one experiences from this, the more diagnostic and therapeutic tools providers will need to explore. On very rare occasions the condition may become so bothersome that a person may need to consider special accommodations such as seeking a disability status.

Therapy:

In general, there is no one remedy that is able to correct the condition quickly and completely. Relief is often the result of a multi-prong approach which tackles the most significant problems that were identified through a variety of options. Talking with your provider is the best first step. They will be able to discern what course, e.g. correcting laboratory abnormalities, referencing sleep apnea issues, and addressing resources for emotional support is the best path for your individual situation. Surprisingly, exercise has been the one consistent and most potent intervention found to be a major factor in cancer survivors to help many symptoms, including brain function. While we do not yet understand the connection fully, current studies are underway to explore these findings (better perfusion of brain or toxin removing organs?). A smaller subset of individuals may benefit from provider prescribed stimulants and/or brain training exercises

Prognosis:

As far as current evidence tells us, “brain fog” does not represent a precursor of dementia. With the proper attention and intervention, the brain can, and and in most cases will, continue to improve. This process can take time and patience, but is an achievable result!

Resources:

Relevant links from major cancer organizations:

Breast Implant Associated Lymphoma

Breast Implant Associated Lymphoma

Breast Implant Associated Lymphoma is not a new entity and remains a relatively rare phenomenon. But it made the headlines this week due to a recent FDA advisory meeting that may trigger more research and future changes in clinical management. But until then, the bottom line:

If you have breast implants, there is no need to change your routine medical care and follow-up. You should expect swelling and pain immediately after surgery. If you notice changes in the way your breast looks or feels after you recover from surgery—including swelling or pain around the implant—be sure to talk to your health care provider about the possibility of BIA-ALCL. Although not specific to BIA-ALCL, you should follow standard medical recommendations including:

– Follow your doctor’s instructions on how to monitor your breast implants. If you notice any changes, contact your health care provider promptly to schedule an appointment.

– Follow your doctor’s instructions for routine mammography screening. Be sure to inform the mammography facility that you have breast implants so enough time is scheduled for your mammogram. Your doctor may also recommend other tests, such as magnetic resonance imaging (MRI).

FDA

This link may also be helpful: FDA’s FAQ.

Are You Happy?

Are You Happy?

All human beings have feelings, although at times we may not know exactly what we are feeling, or how to express our feelings in healthy and helpful ways. This can be particularly true when you have experienced an overwhelming and sometimes traumatizing experience like cancer, which may have forced you to face your day to day life in “survival mode” and triggered you to ignore your feelings. 

Once a cancer survivor enters the post-treatment phase, they may feel that it is expected for them to smile all the time and be grateful for the extra time they have been given. Additionally, our society and the people around us may mean well by continuing their role as cheerleader – encouraging us to be happy and strong and upbeat!

This is important in the pursuit of a healthy sense of well-being, but, as a cancer survivor, you may continue to ride an emotional rollercoaster still unsure of what lies beyond the next turn. You may be tired of the cancer treatments, angry that your recovery may be slower than you expected, and frustrated that you need to do extra activities to facilitate healing. You may be upset that you have missed certain parts of your life and perhaps continue to miss out on things you once enjoyed or planned to enjoy.  [Disclaimer = if your feelings affect your ability to function and/or your pain is so overwhelming that you are considering hurting yourself or others, then please contact your local emergency service and/or your doctor].

No one knows what your happy is, or what you feel, or what you should be feeling. Only you know how you feel, even though you may not always fully understand why you feel the way you do. But there is validity in even the confusion. We are all unique, and we cope differently with grief about what we have lost (e.g. time, health, functionality, sense of well-being and security) and how we search for new meaning and purpose in the cancer aftermath. Allow yourself the opportunity to experience your feelings; work through your emotions instead of avoiding them. This often nurtures and allows the truest and deepest of personal emotional healing. 

Sometimes, a simple change in wording can make a big difference. Rather than encouraging you to “be happy”, advise your loved ones and friends to ask outright “how are you feeling?” and then giving you (and them) permission to be open, thus creating the opportunity for a joined conversation that includes exploration, healing, and growing.

Looks Can Be Deceiving….

Looks Can Be Deceiving….

Legend: Do You See a Young Woman or an Old Woman?

Cancer Survivors may look good on the outside, but may struggle with multiple unseen functional problems that are highly unique to them.

  • Physical. Everyday experiences such as walking, standing, moving, lifting, etc. may become difficult and often aggravating, and relief factors and patterns may differ highly from day to day and person to person. Bowel and bladder functions can experience great fluctuations ranging from urgency to incontinence and thus triggering multiple bathroom visits. Still others may be unable to function without external manipulation and the use of medical equipment such as a catheter and/or lubricant, resulting in a prolonged bathroom visits and the need for discreet disposal of personal items.
  • Psychosocial. Some people may experience cognitive issues and find that their patterns of thinking, remembering, and/or concentrating may be somewhat slower than in the past. Emotionally, they may feel as though they are on an emotional rollercoaster. Others may experience the feeling of enormous duress, as medical bills and paperwork may continue to pile up while trying to heal and to manage the daily busy-ness of professional and personal life. Regular and restful sleep may be evasive resulting in being easily overwhelmed and fatigued. Work schedules may need to be adjusted to allow for adequate time to rest, heal, and take care of medical, private and financial concerns. 

Cancer survivors often may feel conflicted – they may not want to be perceived as someone needing special considerations because of their situation, nor as one who may be interpreted as abusing the situation. But it is important to embrace and speak up for the things that they as an individual need to survive and thrive during the process. Fear of being misunderstood can lead to a diminishing of their potential to thrive and heal at their own personal best. Feelings like shame and fear further perpetuate the vicious cycle of a growing distance between the survivor and people around them.

Sometimes little things make a big difference. A disabled person parking placard (for which eligibility can be determined via your not-to-be-forgotten primary care provider!) may allow you to preserve independency and energy for other tasks. Communication is essential in any relationship, whether with coworkers, families, or providers. It is up to you to speak up and care for yourself by letting others know what you need. Only through active and engaged dialogue will we begin to understand and support each other.   

At work, one may need to submit paperwork to Human Resources Department to justify your need for special circumstances that may help protect your employment. And employment discrimination laws protect cancer survivors. Don’t be afraid to avail yourself of the help the law provides for your circumstances! Vocational Rehabilitation Offices at the State level may be able to provide services to help persons with disabilities prepare for, obtain, or maintain employment. Please ask your care team to speak with a social worker or navigator to help find the services that may be best for you.

Most cancer survivors who need accommodations, do not relish this spotlight and the perceived attention it attracts; but the courage to step up and claim what we need may allow us all to gain insight into how the world can be made into a better place . Inclusion and acceptance – we are all together in this world. We can learn from and support one another. Together we stand strong! 

The Freedom to Move….!

The Freedom to Move….!

Not all of us are meant to be ballet dancers, but being fit as well as having stamina, strength, and range of joint motion contribute to one’s ability to dance through life. Cancer treatments may have affected you physically and emotionally. Pain, malaise, fatigue, low blood counts, difficulty breathing, etc., resulting in the loss of muscle mass and stiffness and painful body movements keep this vicious cycle of deconditioning going. You may not ever be able to regain your pre-cancer diagnosis level of fitness, strength, and flexibility, but it can often be improved upon.

Be sure to first discuss with your doctor if more diagnostic testing may need to be performed and which one of these following options might be a best choice for you given your health, availability of resources, and/or insurance coverage. Upon reconditioning, the eventual goal is to try to participate in a safe and consistent exercise program.

You can work with professionals to rehabilitate your strength, ability, and balance. This can be through e.g. physical therapist, occupational therapist, cancer-certified exercise trainer, or an exercise physiologist. 

It can feel frustrating when you have pain, stiffness, and a limited range of motion, especially when no clear biological explanation or helpful remedy can be found. It’s persistence can lead to dysfunction, disability, and emotional distress. One option to consider is a technique called Myofascial Release. The evidence has shown this techniques to be safe, gentle and effective.  The essence of the technique involves the professional application of gentle pressure or a pulling motion  (“telescoping”) that will allow the careful release of tight myofascia. 

Most likely you are familiar with the plastic wrap that is commonly used in the kitchen and that can get wrinkled up before you are able to cover the intended target resulting in needing to get a new piece of plastic wrap and starting the process all over again! Your body has a similar “wrap”, called myofascia, that covers your organs, bones, tendons, and muscles. It can become tight due to stress,  physical and emotional trauma, medical procedures, or injuries. These may result in stiffness, a limited range of motion, and pain in areas that may not make anatomical sense. Since this fascia is connected through your whole body like a web, you may not feel the symptoms in an expected location (for example, if you pull on the bottom of your shirt, you might feel that in your shoulders). Your nerves and blood vessels run through this web, which can produce unique symptoms, when the ‘web’ tightens.

To find relief, you can 1) try various self-help myofascial release methods that can stand on their own and/or 2) consider working with a professional. Having someone to partner with in developing a plan, such as a dedicated professional can alleviate not only your pain but also the stress. Locating a professional can be challenging depending on your location. There are a variety of providers that can offer myofascial release such as physical therapist and chiropractors. As with any field, please be sure to seek out someone who has undergone and continues in their specialized training and certifications, such as those providers trained in the John Barnes Method of Myofascial Release.

Enjoy moving through life, with grace, one dance at a time!

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