Straying the Course

Posted on: March 4th, 2016 by
19

I’m the kind of person who always starts what I finish. When I have a goal in sight, nothing — and I mean nothing — deters me. I am willing to do what it takes to stay the course. I am not a quitter, not by any stretch of the imagination.

But I quit taking Aromasin about halfway through my regimen. I felt like a failure then. Still do.

A disclaimer: This post chronicles my experience with aromatase inhibitors (AI). I am not suggesting that people quit their AIs, nor am I offering medical advice.

***
After chemotherapy and radiation ended, my oncologist put me on the aromatase inhibitor Aromasin. The plan was for me to take this AI for five years. My hopes clung on these pills; I never skipped a dose, and always took the pill at the same time each day. Understandably, I was so afraid of the devil called cancer, nothing would stop me from taking this medication.

At first, I tolerated Aromasin well. I was happy to be taking a drug that could improve my odds of not getting breast cancer again. I clung to these pills as someone in the ocean clings to a life raft. Aromasin seemed a salvation of a sort for me, and I felt I had an extra security net. At that time in my life I was athletic, and I jogged, swam, and did weight training.

Several months into my medication regime, I started feeling joint and bone discomfort. I didn’t know why. The discomfort wasn’t enough to deter me from living a quality life. I had an active social life and kept exercising, my workouts averaging two hours each.

One thing to know about me: I have a relatively high pain tolerance. I hardly needed pain medication after my bilateral mastectomy with reconstruction. With all the procedures done to me in my lifetime, I have felt pain, but I tend to tolerate it well. That’s not to say I’m a pain addict and a hero: if I need dental work, I tell the dentist to maximize the novocaine. I had a pain killer readily available after my DIEP flap procedure. I just like to have pain killers around — just in case.

So when the bone and joint pain started and continued, I easily ignored it.

Then it got worse. I started taking Tylenol, but I continued exercising. I didn’t yet realize that the pain might be a side effect of the AI. Fear was starting to plague me; I wondered, did I have a recurrence? The pain worsened over time, but I refused to call my oncologist because I was scared he’d tell me I had cancer again. And that fear was greater than the discomfort of the pain.

The bone and joint pain got significantly worse after the one-year mark of taking the AI. It was affecting the quality of my life, but I kept exercising and continued being active. The next year would find me in quite a lot of pain, excruciating at times. I still refused to tell my oncologist, fearing the worst.

After the two-year mark, the pain became unbearable and crippling. Even breathing hurt like hell. At this point, I was in anguish and became an animal trapped on a never-ending Ferris wheel of pain. I remember driving, crying all the way to my destinations because even the most minimal motions were excruciating. To relieve the pain I tried weightlessness — floating in the pool. I remember painfully stepping into the shallow end and floating, with no relief. It hurt to float in the pool.

I had no quality of life.

I finally summoned up the courage (or the smarts) to tell my oncologist, who immediately put me on Femara instead. The pain, however, didn’t let up, so he made the executive decision to take me off AIs completely, saying, “This isn’t the class of medications for you.”

I felt a combination of relief and fear. I was relieved that the pain would go away, but I was so scared to lose a possible protection against a recurrence.

Was my oncologist taking a calculated risk?

Was he a gambling man?

Did he know that I could stay healthy even without an AI?

I know my oncologist does not make his decisions lightly, and he puts lots of thought into what he decides.

I didn’t choose to go off the AI; he made the decision for me, so that took some pressure off me.

Still, I don’t like being an aromatase inhibitor drop out. It’s not something I’m proud of. Sometimes I feel shame and blame myself for not being able to finish what I started, especially a medication that could protect me against a recurrence. I feel like a failure. A quitter.

As the pain eventually subsided, I felt grateful. But to this day, I don’t know if going off the AI was the right thing to do. In the world of Cancer Land, there are no guarantees.

My friend Nancy Stordahl recently posted two excellent posts on her experience with aromatase inhibitors, which inspired me to write this post. You can read them here and here.

Ferris wheel

How do you feel about aromatase inhibitors or any other kind of medication you are taking to hopefully ward off cancer?

Did you ever have to stop a certain treatment? If so, how did that make you feel?


Random Acts of Kindness

Posted on: February 17th, 2016 by
12

“In the end only kindness matters.”

— Jewel, “Hands”

Last week, I participated in a tweetchat about the value of kindness in medicine. While this topic is a no-brainer — yes, doctors and patients should be kind to each other — unkindness is rampant in medicine.

Being on the patient side of things, I’ve seen firsthand the harm caused by unkind medical personnel — from administrators to physicians. What amazes me is that so many unkind professionals (I realize this is an oxymoron) are face to face with patients every day. I’ve been treated so poorly by some medical people, it’s disgusting.

As my readers know, a second-opinion oncologist told me that I was in danger of dying (I was newly diagnosed with breast cancer then. Duh.). He flippantly told me that I shouldn’t even consider fulfilling my dream of having a child because I would orphan him or her.

How could he be so cruel? Couldn’t he see how frightened I was? How could this self-important, arrogant ass live with himself after making such a comment?

After that appointment, I got in the elevator and sobbed uncontrollably, as I fell to the bottom of my bottomless world.

A surgeon sneered at me when I tried to explain my fears to him. Another surgeon scolded me like a bad little girl for not removing organs he felt should come out. He was angry that my primary care physician and oncologist didn’t agree with him and he blasted me for it. A receptionist announced my business so loudly that everyone in the waiting room could hear it. Even before she opened her mouth, that day was an especially bad one for me. An MRI had revealed a possible recurrence in the breast that had had cancer a few years before, and I was weighing my chances of life and death. Luckily, the mass was benign — unlike the receptionist.

On the flipside, patients can be rude. A couple of doctors have told me that some patients have treated them harshly — from arriving to appointments late and then expecting to see the doctor immediately to just plain having a nasty attitude.

Kindness should reciprocal between patient and doctor.

In fact, the tweetchat I participated in got me thinking: kindness also matters outside of medicine. I know this is no grand epiphany, but it amazes me how often people are unkind to each other. So when the tweetchat moderator asked us to commit to one random act of kindness, I immediately thought of many random acts of kindness I could commit to. Of course, with only 140 characters to type per response and other participants wanting their say, it would have been unkind of me to dominate the tweetchat with all my ideas. So, here on this post, are five random acts of kindness that have been done to me and five random acts of kindness I’m committing to doing from this day forward. Not all of these are cancer-related, which is fine, and they are not listed in any particular order of importance.

Random Acts of Kindness Done to Me

1. In a chemotherapy room, when a nearby family saw that I was receiving chemo alone, with no loved one by my side, they took care of me. Although their daughter had a grim prognosis, her parents focused their attention on me, as well. They got me apple juice, a warm blanket, offered me treats, and so on. I was their other daughter for the day! I thanked them then, but I wish I could thank them again, in an e-mail or something. What they did that day was extraordinarily kind to me, and I will never forget them.
2. When one of the radiation machines was getting repaired, the wait to radiation treatment was understandably longer than usual. My radiation oncologist and her staff handed out potted violets to each of us patients for the simple act of waiting. I don’t know how they got so many violets so fast, but the doctor and other medical personnel worked their magic.
3. After my failed stereotactic core biopsy, my surgeon magically appeared and did the biopsy then and there. The nurses rubbed my legs and held my hand. For that act alone, I love them.
4. At times students or alumni write me an e-mail or a note telling me how much I’ve meant to them. I treasure these communications.
5. My daughter is kind. One time, I couldn’t help it but cried in front of her about the situation with my dad breaking his hip. We were in my parents’ home in Florida at the time after a stressful few days, and as I cried, she wiped my eyes with a tissue and told me that it would be okay.

Random Acts of Kindness I’m Committing To

1. I hope to make a positive difference in my students’ lives and help them.
2. I’m going to say something nice to a cancer patient and/or their loved one(s) while we are waiting to see our oncologists. This is the one I committed to on the tweetchat, and this random act of kindness will be the most difficult for me. Normally, I stay to myself, paralyzed by fear and sick to my stomach. But I want to reach out and talk to someone else who might be afraid. Maybe this will backfire — after all, everyone handles the waiting room wait differently, but maybe I can provide some comfort to somebody else.
3. I will tell at least one doctor how much I appreciate him or her.
4. I will reach out to others whose hearts may be heavy, just to see how they are doing.
5. I will be kinder to myself each day. I won’t berate myself for not exercising hard enough or for not accomplishing every goal. Instead, I will show myself the same kindness I show others.

Tree and light

Is there an act of kindness you received or gave? Please feel free to share; I would love to hear about it.

Is there any random act of kindness you’ve committed to? If so, please share.


Let’s Talk Bones

Posted on: February 8th, 2016 by
13

A few weeks ago found me en route to Florida again, this time for an extended weekend. While I wish I could say the weather and a relaxing vacation were beckoning, I came to the subtropics to comfort my mother, visit my father in the rehabilitation center, and meet with rehab staff.

As you know, my father broke a hip. He has osteoporosis and had fallen out of bed onto a carpeted floor. While my brother and I were in Florida together a couple of weeks before my latest visit alone, we were industrious — we ordered and installed various home equipment for my dad for when he returned home to recover even more from the surgery. Such equipment included a shower seat and a guardrail on the bed.

When my dad was in the hospital recovering from surgery, I asked the charge nurse what his prognosis might be. (I missed the doctor who stopped by earlier.) She gazed through me and gave the same rote answer I’m sure she gives everyone, “If he works hard in rehab and builds up his strength, that is key. People who do this tend to do well.”

Yes, but still I wondered, how many people actually do this? I could read between the lines on her face that he was not going to do well.

At rehab, the occupational therapist taught us the best ways for my dad to move in order to heal and how to move when he is at home.

We anticipated that he would eventually make a full recovery.

Then, as my brother and I continued to get and assemble the proper home equipment for our dad, I realized that perhaps the very act of assembling the equipment was our way of holding onto hope that he would make a slow-but-full recovery.

We hoped he would be able to walk again. Prior to the fall, he and my mom were ballroom dancing two to three times a week and, in their younger days, won awards for their dancing.

I now realize that their ballroom dancing days are over. And perhaps his walking days. He is wheelchair-bound, with dementia and Parkinson’s disease. He is now home with aides there to help for much of the day. My mom is just living one day at a time, coping the best she can. Therapists are working hard with my dad, but things are not going so well. One doctor said the bone break and surgery “really set him back.”

I’ll say.

****

A few weeks before my dad’s fall, my mother was diagnosed with osteoporosis, with 50 percent bone loss. She had been so involved taking care of my dad these last few years, that she forgot to take care of herself and complement dancing with other bone-strengthening exercises, although that’s not all to the story. I think she has a genetic predisposition to the condition.

Luckily, she is now exercising and taking better care of herself.

I worry about her falling, too.

****

My latest dexa scan this winter showed me still stuck in osteopenia land. Oddly, this is good news. My bone density hasn’t worsened in two years. But I know osteoporosis is an unwelcome next-door neighbor, thanks to the collateral damage of cancer treatments and early menopause.

Add the genetic osteoporosis component, and my bone health is hanging by a thread.

When I first thought about possibly having osteoporosis in the future, I was angry. And afraid. I still am, actually. Bad gene pool, bad chemo pool. I remember having had slight bone fractures over these post-cancer years, and I wonder if they were due to low bone density.

Sadly, it seems I will always have osteopenia. But I will fight my hardest against getting osteoporosis. I’ve heard and seen too much about this condition to just not try to fight back.

I must make adjustments to my diet and be more vigilant about eating calcium-rich foods, balanced by calcium and Vitamin D supplements. Weight bearing exercise is key. This includes walking and lifting weights. I’ve started a new exercise regime, and I’m hoping it pays off.

In the meantime, my brother and I will try to help my parents out as much as we can long distance. I’m reassured that today my brother and his family are at my parents’ house to help out in any way they can.

In the meantime, I will continue to take preventive actions. And I will hopefully break the family osteoporosis legacy.

Palm trees close up

Have cancer treatments adversely affected your bone density?

Do you have any tips to increase bone density?


10 Ways to Cope With PTSD

Posted on: January 26th, 2016 by
9

Going through cancer and its treatments causes physical collateral damage, but the debilitating psychological impact of cancer is not as often discussed — particularly Post Traumatic Stress Disorder (PTSD).

I know this firsthand, as my readers know.

I’m a card-carrying PTSD member.

I first disclosed my struggles with this disorder a year ago, and have been open about how my cancer trauma resulted in PTSD. For years I hesitated to reveal this aspect of my life, as I know there’s still a stigma associated with mental disorders. Luckily, I’m part of a wonderful online community that has accepted and supported me, and I have many other support systems in place.

Many people with this condition are not so lucky. And that’s why I wrote this post: to help those who find themselves with PTSD and those who may not know how to begin turning their lives around.

This post is proof that someone can live a quality life with this disorder.

Here’s my disclaimer: I’m not a psychology professional; I’m sharing what works for me, and my advice is solely based on my own experiences. This post is not a substitute for professional help. In addition, everyone is different, and methods that work for some may not work for others.

That being said, here’s my list of 10 ways you can cope with PTSD; these are not presented in any particular order of importance, and this list is not all inclusive.

1. Don’t allow the stigma of having a mental disorder imprison you. Seek the help you need. Society can be quite judgmental and attach a stigma to mental disorders, but you need to think of your own psychological needs and take care of yourself. Just as you’ve gone through cancer treatment to hopefully eradicate cancer, it is crucial that you be proactive in your psychological well-being. And it’s up to you whether to share with relatives and friends what you are going through.

2. Reach out to professionals who can help you. This may include a psychiatrist for medication and/or a psychotherapist skilled in treating trauma. Besides medication and traditional cognitive psychotherapy, I’ve worked with my therapist through EMDR (Eye Movement Desensitization and Reprocessing), a treatment used to combat PTSD. It’s been highly effective for me.

3. Practice mindfulness. Slowing down and focusing on our actions or inactions can cause a feeling of serenity. This is a cliche, but you need to savor each moment. As difficult as this is to do while in the throes of depression, try your best to slow down and focus on basic actions, such as eating, moving, or just observing a beautiful seascape.

4. Exercise. People exercise for a variety of reasons, such as losing weight and getting into better shape. These are valid reasons, but I have found exercise to help my mental state. Exercise calms my mind, and I feel mentally and spiritually strong for days after a workout. By “workout,” I mean any kind of exercise your body can handle, depending on your body’s strengths and/or limitations, as well as your desires and goals.

Exercise can include tai chi, yoga, walking, swimming, running, ice skating, dancing, shoveling snow, mowing the lawn, or even cleaning the house. My gym offers aquatic tai chi, and it’s wonderfully gentle. Right now I’m looking for a yoga class I can tolerate: I’m admittedly a three-time yoga-class dropout, but I’m hoping the fourth time is the charm. Particularly, I’m looking to join a yoga group for elderly people.

The key is just to get moving and to be creative with your exercise goals.

I’m convinced that if the endorphins from exercise could be bottled and sold, they would be one of the hottest-selling items.

5. Have an active social life. Stay in touch with friends and family who lift you up. The worst thing one can do is isolate him or herself and open the door to depression and anxiety. Meet a friend for coffee, another one for dinner, and so on.

6. Conversely, avoid toxic people who drain the life out of you. To determine whether someone is too draining for me, I use the metaphor of a cup. My imaginary cup measures how much stress I can take daily; the key is to end each day without the cup being full. I evaluate whether certain people fill up that stress “cup” faster than others. To my dismay, some people have consistently filled my stress cup. They are no longer my friends.

I’ve even ended my affiliation with a breast cancer support group filled with toxic individuals who made my cup runneth over. In fact, I remember a “friend” in this group who stole my time through her negative gossip about others, endless diatribes about her life, and complaints about everything. After I parted ways with her, the quality of my life improved dramatically, and I never looked back.

Toxic family members are often more difficult to avoid. If you can, minimize your precious time with individuals who drain you.

7. Keep a writing, art, or music journal. Use a creative outlet to help you sort out your feelings. Many people do not think of themselves as creatives, but truth is, we all have a spark or two of creativity. Use the medium of your choice regularly, and chances are you will find it cathartic to write, draw, or even sing about your experiences and what is bothering you and lifting you up.

8. Meditate. You can meditate the traditional way, or through creating art, writing, sewing, crocheting, arts and crafts, and/or coloring in the popular coloring books for adults. These are all meditative, relaxing activities. I know I am terrible at traditional meditation, but when I oil paint or write, I am transported to a relaxing place, and I’ve come to realize that my hobbies allow me to meditate my way.

9. Tap into/avoid social media. Social media venues such as Facebook and Twitter help me reach out to other people affected by breast cancer. The online support community is important to me. That being said, too much of a good thing is actually not a good thing. Limit your social media time. If you’ve been diagnosed with PTSD, it’s even easier to get overstimulated by social media than the average person.

My goal is to allot certain times for social media, including shutting down all my access to social media and anything technology-related at least two hours prior to bed. Facebook and sleep simply don’t mesh well.

10.Finally, and related to point #9, get enough sleep and rest. Insomnia has historically been my Achilles’ heel, but each year I get better in my sleep goals. Rest is vital for your body and mind. Being short of sleep is a recipe for poor mental health.

These tips are not intended as “quick fixes,” but they can still help anyone who’s coped with trauma. Those with PTSD have to work extra hard to stay mentally healthy. Hopefully, this post will make coping with trauma a bit easier.

Ocean

Which tip(s) resonate with you the most?

Do you have any advice to add to this list? What helps you spiritually and mentally?


Setting the Bar Low

Posted on: January 8th, 2016 by
17

This year, my goal – not my resolution – on fitness is to set the bar low.

I was never a super athlete. But prior to cancer, I was in great shape and enjoyed exercise. Now, after years of grieving what I’ve lost, I have finally accepted my physical limitations and, with some creativity, have turned them into opportunities.

***

After diagnosis and after radiation and after chemotherapy ended – and I’m lucky to say “ended” – it understandably took me awhile to regain my strength. An aromatase inhibitor (AI) didn’t help matters, as I could barely move due to crippling joint and bone pain. Yet, after my oncologist took me off the AI, I still recovered sufficiently to start exercising again.

In the year leading up to my bilateral mastectomy with DIEP flap reconstruction, I was in the best shape of my life. Physical fitness and healthy eating would be paramount to helping me get through the surgery and the difficult recovery ahead.

So by day, I ran, walked, did weight training, and swam. Every night, I listened to a guided imagery CD by Belleruth Naparstek, titled Meditations to Promote Successful Surgery. This CD helped me visualize surgical success and thorough healing.

Exercising My Demons

The healing process, though, was excruciatingly slow. Walking was painful. Running would be out of the question forever.

I continued to swim, but I wanted another physical outlet, as well. I decided to ride a bicycle again after a long hiatus from this activity. So I bought a beautiful, brand spanking new bicycle.

You know that saying that once you learn to ride a bike you never forget how? Well, I actually “forgot” how to ride. Biking used to be such a joy, and now I could not balance, thanks to cancer’s collateral damage, including the side effects of my PTSD medications. Meanwhile, my two-wheeled nemesis is gathering dust in the shed.

In fact, lack of balance has been one of my many post-cancer surprises. The few times I go down a flight of stairs, I hold onto the banister for dear life. And I’m no longer able to ice skate, something I previously enjoyed a lot. My daughter recently went on an ice skate play date, and I had to stand on the sidelines cheering her on while she held onto the wall. Eventually, her friend’s mother came over and held her hand, encouraging her to move away from the wall. I experienced great joy watching my daughter find her way, but deep down inside I felt I should have been on the ice encouraging her, and my daughter should’ve been holding my hand instead.

Skater Ari

And, until recently, fear of lymphedema in my right arm kept me from bowling. Period.

Truth is, I have spent too many years grieving my former athletic self and focusing on what I can no longer do. Now it’s time to stop feeling sorry for myself, accept my limitations, and embrace the activities I can do.

Seizing Opportunities

In the world of exercise, setting the bar low is not a bad concept. To me, it means a change in perspective – setting achievable goals rather than lofty ones.

The first step was to renew my gym membership. The next step was on the indoor track, which I especially love during the harsh Midwestern winters. I still swim regularly, but recently I added another activity to my exercise repertoire: bike riding.

Just yesterday, I took the stationary bike at my gym for a spin. And it was a great experience, as I got a bicycle workout and didn’t have to worry about balance. As I write this, my out-of-shape legs are sore, but I’m happy.

Stationary Bike

I plan to start lifting light weights in small increments. I now bowl left handed. I’ve adjusted my routine and now think creatively to embrace activities I never thought I could do again.

I’m done grieving the things I can no longer do. I’m just an ordinary person trying to cope the best I can with what I’ve lost – by focusing on the abundance that I still have.

Do you fare better setting the exercise bar high or low or in-between?

What are your challenges in taking care of your health?

How have you overcome limitations?


Mindfulness, Uncertainty, and Courage

Posted on: December 30th, 2015 by
15

As I write this, my brother and I are on an emergency trip to Florida.

Our dad broke a hip.

***

Also suffering from Parkinson’s Disease and dementia, our dad had surgery and is now in a rehabilitation center.

The future is uncertain. And I am scared. My mom is also understandably frightened about what 2016 holds. If I think too much about this upcoming year, I jump to hasty conclusions about my dad’s outcome. Despite my fear, though, I realize that while I cannot control what ultimately happens to my dad, I have the power to choose how to handle this situation.

With 2016 right around the corner, this is time to recalibrate and transform myself into a more mindful person. My last post was all about mindfulness and living in the present. Now I must practice what I preach, starting here in Florida.

I take long early morning walks here. I savor everything I sense: from plants, flowers, animals, and palm trees, as I slowly breathe in the subtropical scents. Slowing down to appreciate all the beauty as I get my exercise in is incredibly calming to me. And it helps me collect myself on the many visits to my father.

Now, during this crucible, it is more important than ever to live in the present moment and not jump hastily onto the road of future possibilities. I can’t help anyone if I don’t help and take care of myself first. That’s partly why I have forced myself not to slip into the abyss of depression. I eat all my meals, get enough sleep, and exercise. I’ve got to ignore my inner voices that tell me I’m selfish for thinking of myself so much. Truth is, if I succumb to depression and anxiety, then I cannot be helpful to my parents.

I must also sit with uncertainty. This is incredibly difficult to do. Jonathan Fields’ excellent book Uncertainty: Turning Fear and Doubt Into Fuel for Brilliance has taught me the importance of being able to accept — and even embrace — uncertainty. Easier said than done, I know. But the reality is that nobody is exempt from the unknown. Rather than panic about the future, I choose to “lean into uncertainty,” as Fields recommends.

I continue to seek courage each day. In 2016, I will need it in abundance. I hope I can be brave enough to help my mom make the right decisions on my dad’s behalf. I must draw on courage and strength to sit with uncertainty and to advocate for my parents.

And I don’t mean to sound selfish here, but prior to my dad’s breaking his hip, I was working diligently on my manuscript for an upcoming book. I’d been planning to launch my book in summer 2016. I’ve been working on the book for years and I want to finally publish it. But with my dad’s medical situation, I feel like shelving this goal altogether.

But I need to draw on mindfulness, as well as coping with uncertainty and courage, to continue with my book with the goal of launching in 2016. Perhaps this will be a good distraction from all the emotional pain I’m in right now.

So my three words for 2016 are mindfulness, uncertainty, and courage. I may falter, but I will be faithful to these words.

To all my dear readers, have a wonderful New Year filled with health and joy.

What are your words for 2016?

What are your plans/goals/resolutions for the upcoming year?

Palm Trees


20 Mindful Experiences

Posted on: December 18th, 2015 by
9

The holidays are wonderful, but all too often our society is so caught up by decorations and gift-giving that we forget to slow down and appreciate the beauty of quiet mindfulness.

Don’t get me wrong: I enjoy giving and receiving gifts. But here are 20 priceless experiences that cause me to pause – and take notice – of things that money can’t buy.

1. My daughter’s smile and laughter. How we came from opposite ends of the world to form a family is a mystery to me, but I am humbled by the universe’s randomness that somehow got it right.
2. Snow-play such as snowball fights, snow angels, and sledding. As I write this, it is sunny with beautiful snow flurries. I’m not a winter person by nature, but Ari has taught me to be.
3. The crunch of snow under one’s feet.
4. My inner child sparked by my daughter’s sense of fun, wonder, imagination, and her belief that anything is possible.
5. Changing seasons. Here in Illinois, we have the privilege of seasons that range from blazing autumn colors to downy-white snow.
6. Sunsets and sunrises with their explosive colors. Looking skyward is a great comfort to me.
7. The planet Venus. My favorite celestial body is remarkable to behold in the early morning and evening. If I’ve had a bad day, Venus’ presence reminds me that I’m really having a good day.
8. Animals. Ari and I recently met an owl at a local nature center, which rescues and houses injured animals. And there we stood, transfixed by the bird’s beautiful eyes and feathers. Those precious few moments gazing at the owl gave me peace.
9. My cats. These domestic creatures enjoy cuddling with their human pets. I especially love cuddling with them over coffee and a good book.
10. A good cup of coffee, to be savored.
11. And a good book.
12. Hot chocolate with my daughter after playing in the snow.
13. Music. I’m so grateful for all the composers and artists who create music. My taste ranges from classical to rock, and I am able to savor each song in the moment.
14. Oil painting and sketching and the phenomenon known as flow. More on flow in a future post.
15. The scent of flowering trees in spring.
16. The scent of a freshly mowed lawn.
17. Good friends and family.
18. Nice brisk walks on a crisp autumn morning.
19. Swimming.
20. Each moment, which is a milestone in its own right.

To you and your loved ones, have a wonderful holiday season!

Owl

20151011_145905-1

Do you practice mindfulness?

What experiences do you treasure?

Sunrise


Running On Empty

Posted on: December 11th, 2015 by
17

Pressure.

I’m under the pressure of living up to others’ expectations of what a cancer survivor should be.

Over the years, well-meaning people’s comments have stirred these feelings — from saying I was courageous to have faced cancer to telling me there was a divine reason I survived.

Got Courage?

I don’t.

I want to run away from that hero-on-a-pedestal sculpture people have made of me and now worship because I am oh-so-tough and a cancer-slayer badass and all of that.

Truth is, if I’ve survived thus far, it’s through pure random luck. I’ve done nothing extraordinary or heroic. Throughout treatments, I’ve done what most other cancer patients do: show up.

Truth is, I’m a chicken when it comes to cancer. I was terrified from diagnosis to treatment to survivorship. In fact, I’m even more scared as a survivor (I hate that word) than I was when going through treatments. While in treatment, I didn’t know how insidious cancer really is. Although I initially believed the disease would kill me, eventually I felt that, if I were lucky, I’d be treated and then be “done.”

Boy, was I wrong. I now know I will never be done with cancer. People are dying of metastatic disease, and I can’t feel that good about surviving if others are dying. Don’t get me wrong: I’m grateful to be alive, but I’m beside myself with all these never-ending losses.

Then there are my own demons. Every. Single. Day. I never “won” the battle (I dislike the war metaphors) against breast cancer. In fact, the battle still rages on, inside me, day in and day out. Every day I must battle my fears, depression, and anxiety.

This is the legacy cancer left me.

I yearn to run away. Not only physically run away from my doctor’s appointments and tests, but to run away from my fears and despair. To run away from PTSD. To run away from my pre-cancer life because I naively believed I would remain in good health. I’m trying so hard to run, and one leg is leading the way, but the other is stuck in the quicksand of memory.

It’s a good day when terror releases its grip on my mind. I do have good days. But they are a struggle to come by sometimes. I work overtime to maintain my psychological health.

In the land of survivorship, I’m like Humpty Dumpty: I can see the writing on the wall — I am broken and nobody can ever put me together again.

Divine Intervention

I have a strong faith most of the time, as I explained in a past post. Interestingly, all the times I prayed during diagnosis and treatment, I oddly never prayed for my own survival. Just prayers.

It’s true that my post-cancer life is better than my pre-cancer one in many ways. But some well-meaning folk have mistaken my gratitude for all the wonderful things that have come my way for my gratitude to God for divinely intervening on my behalf — by giving me cancer so I could be a better person. And so I could help others through my writing.

First of all, that’s a bum rap, an unnecessary burden and pressure on God. I do not believe cancer was a divine gift to help me turn my life around and/or help others.

Secondly, while I hope I can help others through my writing, in no way could I ever believe I was the one chosen to survive thus far (and I grieve that I can only say “thus far”) because I have more value to add to the world than people who did not survive. This is utter bullshit nonsense.

I have no more value than anybody else in this world. Yet some religious nuts people believe I’d been blessed with cancer so I can help others and that is why my life has been spared thus far. That this is what lends meaning to my life.

I want to set the record straight: I’m no modern-day hero leading the world on a self-help harmony ride.

Truth is, for the past couple of months, I’ve been the antihero. I’ve allowed myself to sit in the backseat and let PTSD drive.

Telling me I’m courageous and/or that my having cancer was divine intervention pisses me off doesn’t sit well with me. Plus there’s pressure because people perceive me as someone I’m not.

Frankly, I don’t like pressure cooker living.

I’m more of a crockpot gal.

After all, to me, the metaphor of the courageous, blessed cancer survivor is a crock.

Artist: Pawet Althamer

Artist: Pawet Althamer

What kinds of pressures do you feel in relation to cancer?

Has anyone told you a shocking interpretation of why you got cancer?


My Caregivers

Posted on: November 21st, 2015 by
5

It’s November, National Family Caregivers Month. I don’t usually write about months attributed to certain causes, but in this case — and in the spirit of the upcoming Thanksgiving holiday in the US — this is a chance to honor those who took such excellent care of me during cancer diagnosis and treatment. As my readers know, at-home support during the darkest time of my life was nonexistent, and I went through treatments and mental agony alone.

But, now, looking back, I realize I was never really alone. I had many caregivers who tended to me as a family member.

They were my medical team — doctors, nurses, and other medical personnel.

***

When I was diagnosed with cancer, my then-primary care physician became a superhero. She called me several times to see how I was coping. I could tell she cared deeply about me. She had recommended my surgeon and medical oncologist. She followed up with them and with me, keeping up with my treatments, health, and emotional well-being.

Years later, when I underwent a prophylactic bilateral mastectomy with DIEP flap reconstruction, she visited me in the hospital. I had a rough time in ICU, and I was stressed and depressed, even though I was now in another recovery unit. She showed up at my bedside one day and held my hand. And right there, she gave me the pep talk that gave me the stamina to get through my hospital stay. “I know this is difficult for you,” she said, “but you need to hang onto courage. You need to be brave and get through this.”

And with these words, she nudged me through the darkness.

My internist’s medical group unfortunately became affiliated with another hospital, so we had to part ways — but not before I told her how much she meant to me.

At first, my surgeon seemed to lack emotion, and I didn’t think he cared about me. But that changed on the day another doctor botched my stereotactic core biopsy, leaving me understandably shaken. But then, that very day, my surgeon seemingly materialized out of nowhere and performed the biopsy himself. We spoke while he worked, not as a doctor and a patient, but as human to human. The nurses and medical assistants rubbed my legs and held my hand to comfort, calm, and nurture me.

“I don’t want it to be cancer,” I told him pleadingly. And he responded, “I don’t want it to be cancer either.” That comment showed he cared about me. When he called to give me the news that I had breast cancer, he was enormously kind, telling me that I could drop everything I was doing and see him that day if I wanted to. I declined his offer, but I appreciated it.

My mastectomy surgeon, a cancer survivor herself who had had a single mastectomy, spoke to me, not just as a doctor, but as someone personally touched by cancer. She totally “got” me. We had so much to talk about, and I instantly knew that I wanted her to do my bilateral mastectomy. After the procedure, she visited me in the hospital often and advocated for me.

My medical oncologist took wonderful care of me from the very beginning. He spoke to me, not only as a patient, but as a fellow human being. When I was having cognitive dysfunction from the chemotherapy and feeling sorry for myself, I told him I was stupid. He held my hand and told me that I was not stupid and then explained why I was intelligent. Each follow-up visit has been rough for me, given my PTSD, but it’s wonderful to know that he is always in my corner, encouraging me to write, and is generally interested in me as a person.

My radiation oncologist was a ray of sunshine. She smiled often, with a positive, authentic demeanor. We spent a lot of time laughing, which is amazing, considering that I was there for cancer treatment. Once one of the radiation machines was undergoing maintenance, causing a delay in patients getting treatment during their allotted time slots. To lift patients’ spirits, she and the wonderful staff handed out small flowering plants to each patient. One time she was chatting with another doctor, and I appeared, sick with some kind of infection. She immediately left her colleague to take care of me.

One day she said, “I love you,” as she hugged me. While some people might think that is crossing the doctor-patient boundary line, the context of this statement was not lost on me. And neither was the impact of hearing these words at a low point in my life.

Doctors weren’t my only caregivers, however. Nurses were so kind to me. I fell to pieces in front of a nurse at a time when I was so overwhelmed with my diagnosis and starting radiation and chemotherapy. The nurse sat down besides me and held me, rocking me like a baby as I sobbed. She gently wiped the tears off my face and glasses. She nurtured me with dignity.

And, of course, Ann. My beloved oncology nurse. Knowing that I was alone for treatment, she gave me the extra doses of TLC I needed to get through treatments.

Overall, doctors and nurses communicated with each other so well, it seemed everyone knew whenever I entered the Cancer Care Center.

Organizations were also carers. A volunteer with the American Cancer Society’s Reach to Recovery program called me every week, and we talked and talked. She regularly got me through the darkness. Gilda’s Club Chicago was a safe haven, where I learned that I could have fun, even though cancer had entered my life.

My brother and aunt were my familial heroes. Although their being out of town meant they couldn’t be there for me physically, they took great care of me by calling me often and talking me down from the ledge of absolute terror and despair. And they came in for a couple of my surgeries and cared for me afterward. I remember after diagnosis my brother calling me and crying with me. Friends also supported me with their calling and stopping by. My parents had difficulty coping, but they tried by calling me each week to see how I was doing.

I am so grateful to so many people; I know I can’t list them all. However, I realize caregivers are not just those we live with, but those who care for us in any capacity. While I had no at-home support, my medical and support team made me feel special and rallied behind me — reminding me that I was never alone.

Caregivers Nice Scene

Who were your caregivers during cancer diagnosis, treatment, and beyond?

Feel free to share how you were/are taken care of throughout your illness. I would like to hear about this.


Tami Greenfield Boehmer

Posted on: November 11th, 2015 by
11

We didn’t always agree.

Tami Greenfield Boehmer was more hopeful than I was.

So much more hopeful, in fact, that she wrote a book titled From Incurable to Incredible: Cancer Survivors Who Beat the Odds and another book titled Miracle Survivors: Beating the Odds of Incurable Cancer.

Despite my skepticism about the idea that a positive attitude can help fight cancer, I saw value in the Miracle Survivors books, something that spoke to me.

It was the message of enduring hope.

So despite our philosophical differences, I was inextricably drawn to Tami. Perhaps it was her sheer candor. Or her seemingly endless realistic optimism. Or the fact that she marched to the beat of a different drummer than so many in the blogosphere. Perhaps it was because she always held her ground by speaking with integrity and advocacy.

Perhaps it was because of her positive thinking. I marveled how she could be so hopeful, considering all she faced.

Heck, I loved her blog because it was so beautifully written.

And thus we became online friends who were destined to meet. It started when we spoke on the phone, which led her to graciously profile me on her blog. A few years later, Tami was going to go on a cruise for those affected by breast cancer, and she invited me to consider going. She said she would like us to meet. I wanted to go on that cruise but was unable to.

A few years later, December 2014, Tami and her family traveled to a Chicago suburb for a clinical trial appointment. As luck would have it, I live in a Chicago suburb. And so her family and my family met at a restaurant for dinner. Arielle is incredibly shy and didn’t want to talk, so the gift of gab was reserved for me, Tami, her husband Mike, and their daughter Chrissy.

Tami (right) and me

Tami (right) and me

The Boehmer family is a loving family with great integrity, authenticity, support, courage and joy. Chrissy is beautiful and kind. Tami and Mike raised a great young lady. And that evening I had the privilege of meeting a lovely family that, until that day, I saw only in Facebook pictures.

What surprised and delighted me was how spiritual the family was. And I was also pleasantly taken aback by Tami’s and Mike’s irreverent sense of humor. I’m on the irreverent side myself, so we had good fun and laughed a lot.

A week ago, on November 4, I saw the dreaded news on Facebook from Mike about Tami passing away, worded so spiritually: “Heaven gained a powerful angel. Tami made a peaceful transition at 8 pm with Chrissy and Me at her bedside. Her spirit lives on in the hearts of many.”

I know her spirit lives on in my heart. And my heart goes out to Mike and Chrissy, who must go on without Tami’s physical presence.

Tami made the world a better place for having been in it. And she and her family taught me the power of hope, optimism, grace, and sheer courage.