LIFESAVING STRATEGY: Finding Strength

I'm in love with Brad Fountain. Not romantically, of course. Something better. He's one of my heroes and he gives me strength. I will never bike 112 miles, run 26.2 miles, or swim in bad ocean currents for 1 hour 55 minutes. All in ONE DAY. But the MENTAL STRENGTH it takes to bike with needles in your feet, take off your shoes and ride barefoot with your shoes underneath...against a strong headwind, run farther than most people drive in a day, and then conquer ocean dangers...THAT'S COURAGE. And IRON-WILLED DETERMINATION.
 
I cannot be an IRONMAN. Or WOMAN. Not technically, of course. Something better. I'll fight beyond my limits. I'll push to learn to ride a bike again after falling off twice. I'll train to run a half. I'll swim, even when a PT calls the shots, I'll endure. All these things are small victories, my personal IRONWOMAN routine, but never all on the same day. That would almost kill me. I'm not THAT strong.

Because I have IRONMAN heroes like Steve Dembo, I've become an IRONWOMAN. Not exactly, of course. Something better. Like the Ironman Contest, cancer pits you against yourself. It tests you. Every.day. It forces you to find something inside that pushes you past the impossible. And in the process through pain and torture, physical and mental, you find strength. And you leap forward. Because your everyday heroes inspire you. Everything is possible. It's that simple.

#tblgratitudechallenge #savingyourlife #ironmanchallenge #bradfountain #stevedembo

LIFESAVING STRATEGY: Finding Normal

Cancer robs you of your dignity. Not all at once. So you need to cultivate mindful awareness. Of your body. Inside.Out. Not looking at what isn't but what is. Realizing your set point within your journey. Celebrating what is, even tiny pieces. Parade them. Like learning to walk again in heels, leaning on my llama. A month later, no tether.

Living with cancer is a series of celebrations. Making memories of moments. And soon enough, you realize you are fighting back. Finding strength in the small. And one day, despite where you have been or what lies ahead, you kick in, Finding.Normal. It shapeshifts, different daily. But each gain gets you closer to the life you had.

And with the help of a true friend, Meg Blue Griffin, I finally got my life back and found normal running a 5K with her, my cheerleader.mentor.coach. A month ago. I'M BACK. 

#‎tblgratitudechallenge‬ ‪#‎megbluegriffin‬ ‪#‎dangriffin‬ ‪#‎savingyourlife‬

LIFESAVING TRANSPLANTS: No Pain, Great Gain. No Lies.

To get to the transplant stage, your cancer needs to be in control. Not necessarily completely gone, but close. Wipeout chemo will do the rest. Worst.ever. Exhausts, debilitates. Takes you to the brink. When your body is "clean," your cells are harvested. Frozen. Saved. Several days later, bombardier chemo again. Short wait. Your cells are returned. Hospitalization for a month or until your levels return. Complications interrupted and extended the time frame three months because of surgeries to save my finger. Since you cannot receive chemo with an open wound, we had to wait for a nail to regrow.

I remember during the harvest chemo thinking this is what dying must feel like. I am not afraid of death; I grew up in a funeral home around the corner from a beautiful historic cemetery. So I'm not skittish about such things. But this chemo does take you to the edge. Then brings you back. To go through this chemo again in 8 days, after 2.5 years of chemo before--not sure I would have made it. But the delays for surgery were as lifesaving as getting my transplant.
Without a doubt, I would do this again. May even have to. Your transplant statistically should "work" for five years. Most last for life. At my age, I may not ever need that second batch they harvested (they always pull enough for two transplants in case the first doesn't "take"). But if need be, I'm game. After all, it saved my life and I am very grateful.
‪#‎tblgratitudechallenge‬ ‪#‎stemcelltransplant‬ ‪#‎savingyourlife‬

First image is how they package your cells, in small batches. They are thawed just barely, enough to push through this tubing. I took pictures during the process.

LIFESAVING BIOPSIES: Fear No Needles

Instead of doing the #tbgratitudechallenge for 30 days, I decided to share what I learned during my cancer journey. Payback. Trying to show my gratitude to all of you in a different way. And who knows, it just might save a life.

LIFESAVING BIOPSIES: Fear No Needles

Blood can detect many things, but in my case, when chemotherapy was failing me, we turned to a core biopsy. While you are awake but numbed (lidocaine), a needle probe extracts tissue. That determined I now had a second cancer, Diffuse Large B-Cell Lymphoma, a killer cancer. Aggressive, fast growing. Fatal if not defeated. Without the core biopsy, I would not.be.typing.this.
#lifesavingbiopsies #corebiopsies #savingyourlife

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.

R.E.C.O.V.E.R.Y.

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.

BEATING A TRIPLE THREAT

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.

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. 

Related articles

• What is Reiki?
• Acupressure and Reiki
• An Evolution of Reiki Thought
• Reiki Benefits Mood & Well-being

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.

1 Picture = 1000 Words

Thank You!

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?