Friday, January 30, 2015

What They Didn't Tell Me About Cancer

It wasn't a secret.
It  just didn't register.
It was the hardest part of the journey.


In--and of--itself, recovery is a blessing. You made it. Celebrate. But the way back is far harder, or at least it was for me. I never quit, but I remember so many setbacks.

It's all about pacing yourself. I never learned that. When you fly at life full tilt, it's hard to pull back. Cancer pulls you back, never down, but recovery teases you with a level of wellness you want -- but it's still a "not yet."

A year later and I think I finally understand. Limits are not a bad thing, just a new thing for me. I'm getting there with your support and prayers. Without you, a black hole. With you, life bursting with joy, possibilities, happiness. Life is so good!

I was not supposed to live.


I was not supposed to live. 

In April, 2012, my Non-Hodgkins Lymphoma needed treatment, but nothing worked. By the second core biopsy in October, 2012, we learned my blood cancer transformed to Diffuse Large B-Cell Lymphoma (DLBCL), an aggressive cancer, terminal if not defeated. Time is not your friend with DLBCL. Nothing worked until the 7th chemo cocktail in January, 2013, when my clock was ticking loudly, and believe me after all the salvage chemo I had, this effort was a shot in the dark, I think. It worked.

The problem with things not working had to do with an uncommon c-myc oncogene, a pathogen in my body that enables rapid cell growth. NOT good for someone with an aggressive cancer. My lymph nodes under my arms were literally softball size. Scary. So, I have two B-cell cancers in my body which is just bad luck, plus the c-myc oncogene. A triple threat.

I think if I can beat cancer, almost anyone can, given you do not get an always-terminal cancer diagnosis. How did I do it so far. YOU! Without you and your daily support, your "likes" and your comments (I treasure them) and your PRAYERS, (would be lost without them), and gifts (visits, card showers, and thoughtful things, soul food for a cancer fighter), it would have been a hard haul. YOU make the difference EVERY DAY. Early on, I faced how much time I would have if nothing worked, and what death would look like. And then I lived. I am one determined person who always believed I would be cured and given some more time, and I have great plans to do good with that time, God willing. God bless all of you for helping me everyday on my journey to wellness. I love you all! YOU keep me strong.


Originally posted to Facebook as BEATING A TRIPLE THREAT on March 16, 2013. It received to date the most likes and comments of anything I have ever posted, anywhere. I am venturing into blogging again and wanted this to be my "first" post on my blog, After Cancer. I am still grateful to all of you for giving me the gift of life.

Thursday, February 14, 2013

Sharing My REIKI Story

Allie and RJ at neighbor's farm
Although I have experience with yoga and mediation, my introduction to reiki began with my cancer journey to wellness at the Hospital of the University of Pennsylvania, in the Abramson Cancer at the Perelman Center for Advanced Medicine in April 2012. At the onset of my first protocol to treat Non-Hodgkins Follicular Lymphoma, I was asked it I were interested in meeting with a reiki master. My history of openness to and success with stress reduction using alternative healing practices made me a natural to try reiki. I continue to seek reiki sessions during my chemotherapy cycles, and I have always had significant benefit. 

But on admittance to HUP for a fourth (salvage) option with RICE and a potential Stem Cell Transplant to defeat NHL's transformation to Diffuse Large B-Cell Lymphoma, reiki also transformed with the appearance of a new reiki master, Vincent Gilhool. My first session (12-11-12) transported me with physical sensations heretofore unknown. I always feel a lift, as if my body floats, but yesterday it contained a gentle rocking sensation, in suspension. All parts of my body experience the sensation of interaction with the energy force, creating an alternating pressure and lightness of being. Mentally, I always participate in aspects of a journey to another place, and they are as varied as the climate. Going into a session, I have no preconceived notions of what I desire or expect. I just willingly suspend my disbelief and enter, at one with the mind-body connection. Yesterday, my upper BP number dropped from 156 to 115 after reiki. I returned with an inexplicable sense of quietude within and energy outside. Definitely oxymoronic, but definitely what happens. 

Pole Dancing at University of PA Hospital
Mr. Gilhool said that my benefit level is both high and unusual, so what I describe, albeit far-fetched sounding, is simply my story. I should add that in 1980 I underwent thyroid needle biopsies, a procedure that requires anesthesia. I opted for meditation and brought Dr. Jan Fergus with me to "bring me back." My biopsies were done successfully, and the physician later contacted me to discuss the process and benefits of my experience. 

Today (12-12-12), another transformative session. I felt like the healing hands of God were reaching out to me. It began with my eye, which was irritated, uncomfortable, a likely chemo-related side effect. I could feel the pull of the eye without it moving, and sensed the irritant slowly removed. My experiences are always very visually colorful, but today, a whiteness enveloped my inner being, and as Mr. Gilhool moved toward my Smart Port and chest (another unusual aspect was sensing his presence; I usually disconnect from my reiki master during a session), I saw thin black laminate shards of edgy irregular shapes move from my chest into the white light, adding shades of grey. Metaphorically, you could make a case for a cancer metaphor, but on the level of being inside the moment, it felt as if a higher power was guiding healing hands, bringing me to wellness. 

Friends make all the difference in beating back cancer!
If the RICE regimen works, I will give much credit to my oncology team, Dr. Sunita Nasta, Annie Berkowitz, Bernadette along with Dorethea, their secretary. And I will laud the UPenn Medicine teams on Rhoads 7, 6 and 3, which like all of Penn Medicine, is second to none. But I will always also believe that the day the hands of God reached inward was the true beginning of my journey to wellness. Time will tell. 

A Postscript:
RICE did work, and for about 2 weeks my tumors had virtually disappeared. Then, unfortunately, they found an escape mechanism and returned. I am currently undergoing treatment with an off-market use of Gemcitabine and Oxaliplatin. I remain totally optimistic that this regimen will work and I continue to receive amazing benefit from reiki sessions. 
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Friday, January 4, 2013

Beating NHL: The Big Four

Whether you're chasing the race for Super Bowl XLVII, in a gripping fight for academic honors, prosperity, or just dealing with the vicissitudes of daily life, you cannot win without attitude, a game plan with a backup, and cheerleaders. And a sprinkling of luck. Wherever we land in life, we're all fighting for that Superdome victory.

My fight is cancer, my Superdome--Penn Medicine (HUP), my battleground--daily life, beating NHL one day at a time. With an stadium of followers, I am frequently asked how I rebound after being hit with a series of defeats. Like any athlete, I just get back in the game, fight harder, stay tough. And I have the luck of God's presence in my life. Here's my game plan.

People who know me, have worked with me, and my BBFs will tell you I was born with attitude. Although that has not always bespoken a compliment, I am grateful for my OCD attitude because it's a lifesaver. The mind-body connection is strong, and I believe relentless determination is pivotal to winning, whatever the endgame. Staying power--positive beyond infinity--is the key to living mindfully. No scientific evidence exists to prove that attitude can defeat cancer; what it can do is create a lifestyle change, defeating stress and myopia.

Beautiful but DEADLY NHL Cell
Yesterday I began my 5th regimen to beat my cancer, but my tumors are smarter than the drugs and keep finding escape mechanism to regrow the cancer cells after the chemo temporarily wins the battle. So, do I lose the war? Not unless it's God will. And yes, I'm not politically correct where God is concerned; you may call it fate, karma, or something else, but 12 years of Catholic school reminds me that prayer might bend God's will, but will not alter His plan. So, on this one, either way it's a win-win.

Beating NHL with the Best in the Nation
Thumbs Up for the BEST Staff & Meticulous Care
My plan is victory over cancer. To achieve that goal, I began with a serious research initiative, vetting 9 different cancer wellness providers by creating a spreadsheet with rigorous criteria. Fortunately, I did not need to consider geography. I did, however, consider ranking of institutions, clinical research trials, grants awarded, outreach via social media and conferences, access at multiple levels, staff, including support staff, facility appeal and cleanliness, physicians credentials (publications, conferences, awards, grants acquired, field trial initiatives and participation, evaluations), equipment, and overall, how much the institution of my choice was an aggressive leader in its field. And very importantly, how did my future selection support my cancer, which is not a celebrity cancer. I always and forever want the very best; my life is worth PennMedicine Health Systems. Never overlook support staff; they are the backbone of an institution, and I can attest that I have found the very best. As a backup plan, I have considered the Gerson InstituteTherapy, and continue to use alternative therapies like reiki, meditation, yoga, mindful living, and healthy eating with juicing raw foods.

When it comes to a support system, beginning with my husband and friends, I have an army of supporters, and some of the very best are my Facebook friends I haven't even met F2F. People encourage me every day with comments, cards both digital and hard copy, PMs, phone calls, texting, and emails. I've been the recipient of thoughtful creative gifts from friends and fellowship groups, and each one has a special meaning to me. Without cheerleaders, I would find it difficult to move past some of the setbacks I've encountered, but after each failed protocol, my friends encouraged me enthusiastically. Cheerleading makes a difference in my mindset and my wellness.

If I could offer any advice, it would be 4 simple things:
  1. Research and find an institution and support network that is best for you. Online and personal advice is a good way to begin, but visit your potential sites when you narrow them down and get a sense of the pulse of the facility and its people. All the people. Best for me is not necessarily best for you. If you feel that you are safely landed when you select your site, your experience will be much better.
  2. Maintain a sense of humor--it's healthy.
  3. Help others--because it helps you too.
  4. Explore alternative options for de-stressing yourself and your caregiver(s).
Although this post is geared to cancer, the concepts work for just about anything. Happy, Healthy New Year.

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Sunday, April 22, 2012

Vote for your favoite Kiss Lead Goodbye Video

Below are the three finalists in the Kiss Lead Goodbye Video Contest. You can vote for your favorite by clicking this link.

Here are the top 2 in no particular order. Definitely worth watching.
Entry 1: Get The Lead Out

Get the Lead Out from Alana Steinberg on Lead Stick Beware!

I just voted. Will you?

Kiss Lead Goodbye in your Lipstick!

Did you know...that most lipsticks contain lead. Let's join the Campaign for SafeCosmetics campaign to raise awareness.  Want to get involved? Here's how:
At the simplest level, just stop wearing lipsticks with lead. Make wiser choices. Read labels. 400+ lipsticks contain lead. Let's kiss it goodbye!
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Wednesday, April 18, 2012

Real Reform NOW!

Sustainable agriculture, organic, the "good guys"
Self-regulation of a billion dollar industry simply does not work. Given that caveat, I am upset that industry labels at large cannot be trusted, which is why I continue to shop with small businesses like organic South River Miso who have an eco-certified digital footprint (Twitter, YouTube Channel, Facebook, and website). For 3 decades I have watched their eco-footprint, applauded their wise land management and production, and continue to support them.

But unfortunately, billion dollar business cannot be trusted with self-regulation, as this most recent and shocking informations shows. Enter the bad guys--because they lie with their labels. From the Campaign for Safe Cosmetics:
Did you hear the news? On Tuesday, California’s Department of Toxic Substances revealed that a variety of nail polishes contain high levels of hazardous chemicals despite product labels claiming otherwise. These chemicals, dibutyl phthalate and toluene, have been linked to birth defects, asthma and other chronic health conditions.
Labels shouldn’t lie, and whether you’re a nail salon worker or taking your daughter out for a mani-pedi, you should be able to trust that the products you’re using are safe.
This is yet another example of industry self-regulation gone wrongtell Congress it’s time to fix our broken cosmetics laws now!
The good news: Congress is finally paying attention. Last month the House held the first hearing on cosmetics safety in 30 years and is considering updating our 70 year old cosmetics laws.
The bad news: The big cosmetics companies are pushing hard and spending big to keep the broken status quo in place—and we need your help to push back! Help us tell Congress, enough is enough! We need real reform now! Our message is simple: Any new laws must get rid of the worst chemicals in cosmetics that can cause cancer or reproductive harm. They must also require companies to be transparent and honest about what’s in their products and they must include a strong safety standard to make sure decisions about ingredient safety protect the most vulnerable populations – babies, children, pregnant women and workers. New laws must also ensure that states, like California, keep their right to regulate toxic chemicals to protect people’s health.
P.S. We’re a lean, mean, grassroots-powered machine but are in the midst of a David and Goliath battle in DC--can you chip in $10 today to help us push back against the cosmetics industry’s multi-million dollar campaign to stop real reform in its tracks?
Check out the video that began the campaign. AND check out their YouTube Channel. Game changer, I promise you. Not to overwhelm you, but your cleaning products are toxic too, likely. But that's another post.

So here's the skinny. Make safe choices. In a tight economy, it might be hard to send $10 to a watchdog organization that works to make cosmetics safe. But you can make wise choices and choose to use cosmetics that ARE safe. I recommend Josie Maron's 100% pure Argon Oil; been using it for half a year and look younger than ever. Get over the industry's hype about oil; whether you have oily skin or acne, the oil works to balance, smooth, and improve your skin's overall texture. Begin simply and start throwing out the toxins you spread on your largest organ--your skin.

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Thursday, April 5, 2012

Countdown to Chemo with South River Miso

With the certainty of sunrise and sunset, I know that on April 17, 2012, I will begin my journey to remission via chemotherapy. While doctors suggest that there is no connection between my wrist surgery and a cancer flare, I am not a believer in coincidence (read too many John Corey novels). Cancer spike and surgery--a definite link. With a clock counting down to C-day, I have been getting my life in order on the possibility that the experience won't be a good one. And I've begun to realize just how large my life really is, how much there is to get in order, even in retirement (which btw has been a good busy).

The River, the logo, and the concern for the human spirit
When I was diagnosed with Non-Hodgkins Lymphoma 3 years ago, I began in earnest moving toward organic living (again), something I had dallied with throughout my life. We live on a farm so every decision impacts the land and neighbors in our distant periphery. I began studying the toxicity in our life choices at every level and then returned to tried-and-true standards from the inside out. South River Miso has been a part of my life (almost) since their beginning. Found them in my then favorite health food store and never looked back. Buying all of their products, I can guarantee that their products are wonderful, organic, and healthy. While you can cook with them, and I do, I also enjoy drinking them as an AM hot beverage or a PM pick-me-up.

What I love about South River Miso is a company with roots to the land and their philosophy of manufacturing their product. Their ecological footprint shows a wisdom in land sustainability. A self-contained business that begins, grows, matures, and is harvested on their farm has endured and thrived for 33 years with consistency in product output.
AND THEY ARE CERTIFIED ORGANIC! But what I truly admire beyond all of the above is their smart use of social media. You can find them on Facebook, Twitter (@southrivermiso), and YouTube.

Martha Stewart took a field trip to SRM in 2001 and remarked that stepping foot onto their land was like stepping into another world in another time. See if you agree.

 You can watch and learn from their Rice Planting at South River Series. Here's the first in the series.

For the rice in flower, watch this video.

Harvesting the rice is a fascinating video.

You could spend hours watching the series of videos related to the production of South River Miso, and admittedly I have skimmed over the process, but I heartily encourage you to watch the videos on their channel.

So, by the post's title, you may be wondering if there is a connection to beating back cancer with miso. The research is certainly not conclusive (but suggestive), nor am I promoting that using it will cure any cancer. But what I AM supporting is simple: chemotherapy robs your body of just about everything, or so I have heard from friends who have survived treatment. Putting something as wholesome as South River Miso in your body during before, during, and after this time is definitely helpful. I will continue to monitor and write about my journey, but I can tell you now that SRM will be an integral part of my life and I wouldn't have it any other way.

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Monday, March 19, 2012

Do Things Scared

At 7 AM and 70 degrees, I had to work outdoors. Three+ hours later, exhilarated but exhausted, I settled down with (very late) morning coffee. Turned TV to The View's Special Tribute to Mentors. I'm not a fan of frittering life away as a couch stuffer, so this way of relaxing was a departure from the norm, but meant to be. Sherri Shepherd's segment was viewing with
Pastors Holly and Phillip Wagner. Pastor Holly caught my attention when she said, "Do things scared." Author of the best seller Warrior Chicks: Rising Strong, Beautiful and Confident, Pastor Holly believes when you are afraid of things happening in your life, you have to do things scared but with faith and hope in God's plan for you that all will turn out well. A breast cancer survivor in remission for 7 years, Pastor Holly serves as an inspiration to those of us with cancer. Her message: rise up strong with a belief in God's plan for you, because "...some battles we choose, others choose us. The world is looking and waiting for a company of women who will rise in the midst of hard times."

The Big C is a scary experience, but sometimes you just have to do things scared, using the fear to work beyond. I'm not looking forward to treatment, if/when I require it, but each day I rise offering my day to God, asking for strength to make wise choices, finding joy in life on the farm, an organically renewing experience, grateful for the gift of a wonderful life, fully lived.

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