This Week! “Light The Night”Kickoff Luncheons for Leukemia & Lymphoma Society

Tomorrow and Thursday. The annual Leukemia & Lymphoma Society’s Light the Night Walk kickoff luncheons for Houston and Montgomery County are coming up this week:

Houston, August 9, Royal Sonesta

2222 W Loop South, Houston
11:30 a.m. Registration and Fundraising Fair
12:00 p.m. Program

Montgomery County, August 11, Woodlands Waterway Marriott

1601 Lake Robbins Drive, The Woodlands
11:30 a.m. – Registration and Fundraising Fair
12:00 p.m. – Program

Your extraordinary efforts help fund lifesaving cancer research and provide hope to thousands of patients – young and not so young – and their families. Thus far, I’m a cancer (CLL) survivor. Won’t you join me this year?

Kickoff Luncheon image

The annual Leukemia & Lymphoma Society’s Light the Night Walk for Houston will take place this year at the University of Houston, October 8, 2016 and for Montgomery County at Market Street in The Woodlands, October 16, 2016.

Information and registration are available at:

lightthenight.org/txg

832-463-3636 

Your moral and financial support of Joe’s participation in this year’s Walk would be greatly appreciated. Thanks for whatever you can do!!

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Life in a Sandbox

Ever play in the sand? Sure you have, admit it! We all have, even if we won’t admit it.

Unlike Seth Godin who posts his blog entries every day, I don’t. Today, however, I felt compelled to do something special.

My journey has taken me in various directions these past few years and, frankly, I’m still not sure where the hell I’ll end up. Life is painful and hope is elusive. My wife Pam and I have had many conversation about our collective travails. I’ve shared some of those times here in these blog posts and I’ll try and share more.

I know I want more out of life than just wondering what comes next. There’s got to be some joy in there somewhere. We need it to survive . . . and live . . . and prosper.

Recently, I attended a weekend conference on imagination at The Jung Center in Houston. You can read about my experience in the ideasnmoreblog post, my other blog for creative endeavors.

One of the exercises we did that weekend involved playing in the sand. We were exploring what hidden treasures await us that can be accessed through our imagination. Led by Michele Lees, this Playing in the Imagination session involved using a sandtray and symbolic figures (I called them toys).

This was one of those workshops that you could not be in a hurry or on a tight schedule; you’d do yourself a disservice.

After all, it’s “become one-with-the-sand time.”

But, it’s more than just playing in the sand. Sure, we spent some time running our fingers through the sand and spreading it all over the sandtrap, er, sandtray (I’m a golfer; I know traps!).

We even discovered the bottom of the tray was a light blue (think water as in the Atlantic, not the Gulf of Mexico). This would come in handy when we eventually made lakes and streams on our soon-to-become-imagination (fantasy?)-island.

Once we selected out toys, er, symbols as Michele calls them, we began the process of placing them in and around the sand. This was an odd feeling because it felt more often than not, like the toys knew exactly where they wanted me to place them – just like they seemed to call out to me to select them.

Once I completed my newly landscaped island, I took some photos and then wrote what I was feeling at the time.

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The phrase “two sides to every story” was uttered and, thusly, entered my mind. I then thought, “there are most likely more than two sides.” A different perspective, I thought, was also on display. Soooooo, . . . I snapped another photo from a different angle.

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Then as I gazed onto my island, the sandtray began to convey what I was feeling. I know, I know, that just sounds weird. Well, hells bells, we are exploring imagination, ya know. It can get weird.

This is what I began to write before time expired and we moved on.

I’m a reflection of your mind and memories, feelings, opinions expressed. These items called out to you, kind of like Snoopy falling into your arms (that’s another story). The Christmas Tree is a center of a preferred peaceful universe – you want that again – treasures under the tree, but near water. And my boat, half-beached, may be symbolic of your not having had a boat for a long time now. Crayons are still part of your landscape, even a fallen crayon at the foot of the Eiffel Tower (leaning, sad, in mourning). “Voodoo” doll nears a Halloween-like tree but is also next to Eiffel Tower (terror/evil still lurks). The owl seems pensive in his “looking up”at tree. Lighthouse, ever faithful, keeps watch over the landscape. Court jester is at rest and is comfy with his Kaluha bottle and crayon – he doesn’t need lantern at present so it rests by his side. The sleigh resting in Christmas Tree branches is just like what you did in your front yard holiday display.

Upon further reflection, I thought “I’m missing a small golf club, sand wedge, no doubt, and, maybe, a regular size golf ball. This is a sand trap, after all.”

What does all this mean? I’m not sure. I felt several emotions run through me during “construction” of my island and afterwards. I felt relaxed, sorrowful, sad, wishful, expectant, curious, somewhat satisfied – glad I had done it, and captured it on “film.” Other participants in my group got very emotional (angry) about some of their “toys.”

Perhaps some of you will want to try out this exercise if you have not already played with it before. It’s worth it. Contact the Jung Center for more info.

As for me, writing this blog post is a form of therapy. Among other things, I’m a writer, this is what I do. I also like to help people, to share experiences that may also impact their lives. Amidst all my questions about my life and its challenges and frustrations, sometimes the only nurturing outlet, aside from prayer, is my writing. And participating in weekend conferences like this one.

Lemme know what you think of this exercise and any experiences you’ve had.

Now, back to the sandtrap, er, sandtray. Sheesch!

The “little ones” actually mean it. Why can’t we?

This photo captured my heart. I can’t stop looking at it. And wondering . . .

Little white boy offering a flower to little black girlPhoto: Maggie Andresen/NOLA.com  The Times Picayune via AP

Lucien Novak, 2, shares his flowers with La’Nae Hartford, 5, at Lee Circle in Center City during a protest last week in New Orleans. Many protests were held nationwide after police killed two more black men in Louisiana and Minnesota.

Oh, the wonders of children. Their innocence is, perhaps, a blessing.

Sometimes I wish I had it more than I feel I do. I miss my age of innocence.

Each one of us grown-ups has a “little kid” in all of us even if we don’t want to admit it.

Shame on us for stomping it down into submission.

Shame on us for pretending it’s no longer apart of us. Inside us.

Shame on us for ignoring our “little kid.”

We need to tap into him and her more often.

We need to pick some flowers and extend them in an innocent gesture of friendship.

We need to say “Here, my friend. You matter.”

Regardless of where hatred and racism occur and regardless of from whom utter stupidity erupts, we the people are better than that. The nut jobs, I’m afraid, will still be hanging around some corner or some parking lot or some high-rise regardless of what we, as civilized people, do.

We can not let it get the best of us. Our “little kid” inside really doesn’t want that.

If picking flowers and offering them to a total stranger sounds weird, a bit naive and even uncomfortable to you, then try this: How about simply extending your hand in a gesture of friendship and, maybe, just smile.

It’s not that hard! It won’t hurt. Trust me. Try it.

The racist bigot next to you may not care. But you will, as will the person smiling back.

This Is The Last Day

Today, June 30, is the last day of National Cancer Survivors Month.

June is national cancer survivors month

I posted about this celebration a few weeks back and even got a fair amount of attention because I included a photo of me and my oncologist, Dr. Iyer, at last year’s Light The Night Walk.

Well, just because this is the last day of the month-long celebration, doesn’t mean that the celebration stops after today, nor does it mean that research stops after today, nor does it mean that people won’t stop dieing after today (boy I wish that were not true!), nor does it mean that the Leukemia and Lymphoma Society stops needing your money after today, nor . . . !

Earlier this week I spent half the day at The Methodist Hospital in Houston’s Texas Medical Center (for those of you unfamiliar with this medical institution) getting a CT scan and lab work done, as is periodically required by my clinical trial. I won’t know the results until after Dr. Iyer reviews them. Generally, though, I feel alright and hope that my “almost complete remission” status remains so, if not, goes to CR (complete remission) status.

Thus far I’m one of the lucky ones; I’m still alive, and kicking (mostly). Sure, I have my aches and pains, especially from a cracked vertebra in my lower back, and a supposed allergic reaction to the chemo pills I take daily.

There’s not a day that goes by that I don’t think about where I would be were it not for the advances in research of blood cancer and the knowledge of physicians like Dr. Iyer and others about clinical trials. Or these four magical chemo pills, Venetoclax.

Simply stated, if it weren’t for the clinical trial in which I participate, and sponsor companies like Johnson & Johnson and Genentech, I would either be bankrupt, dead or both. Believe me, there’s nothing like a stiff bout of depression to cure what ails ya!

If you have a cancer and/or know of someone who does, join me in registering for and walking in this year’s Light The Night Walk. The Kickoff Luncheon for Houston is set for August 9 while the actual walk is on October 8. If you’re not in the Texas area, just contact the nearest office of the Leukemia and Lymphoma Society and they’ll help you out.

Here’s to a better, more positive outlook for all of us.

Onward!!

LLS Logo-blk002

 

Happy Dad’s Day and Birthday Wishes!

Today is bittersweet. It’s Father’s Day. I lost Dad back in 1978. I miss him terribly.

It’s also my birthday. Please, no applause.

Yeah, it happens every once in awhile; my birthday on the same day as Father’s Day. I do, however, appreciate all the gracious FaceBook and LinkedIn birthday wishes. I may yet get some actual printed birthday cards – in the mail. Miracles still exist.

My emotions today seem to be all over the map. True, my wife, Pam, and I have been through Hell and back these last couple of years, and life’s been most trying these last couple of months. Today is no different other than being very quiet. Maybe that’s a good thing.

Maybe if Dad were still with me, we’d share a cocktail or two (him, Jim Beam, me, Jack Daniels). I’m sure a little philosophy would be tossed into the discussion while we watched the final round of golf’s United States Open.

Dad, you see, was my golfing partner and buddy. Though we did not live on the course, I felt I practically grew up on it – back in Lake Charles, LA.

He was also my advisor, along with my next-door uncle, June (my second Dad). Given what I’ve gone through as an adult and where my Journey has taken me thus far, I so miss his advice and counsel.

I usually spend a special hour every year on August 20 at 4PM, CDT. That was when he died. I prepare two drinks in two special glasses, filled with the afore-mentioned bourbons. We spend the next hour together, talking, crying, reminiscing.

I imagine I will do something similar today, but he’ll have to make do with Jack rather than Jim.

I don’t mean for this post to be a downer but I gotta tell it like I feel it. I’m sad and yet feel blessed that I’m still here. Cancer has not killed me! Now, if I can only get Pam to walk again with little help and be fully recovered from that insidious stroke.

That would make one helluva birthday present; hmmm, hers is coming up next Friday.

Meanwhile, Happy Dad’s Day, Daddy – even if it is on my birthday!  🙂

 

The Latest Cancer Fact Sheets & Treatment Info

In keeping with the fact that June is National Cancer Survivors Month, the Leukemia and Lymphoma Society is rolling out a bunch of information regarding blood cancer. Since this blog is evidently viewed by a variety of folks who either have cancer or know someone who does, I take it as a personal responsibility to share with you what LLS shares with me.

June is national cancer survivors month

The Leukemia & Lymphoma Society (LLS) is pleased to present these updated fact sheets for patients and caregivers:

Cord Blood Stem Cell Transplantation Facts

Sexuality and Intimacy Facts

Chronic Myelomonocytic Leukemia (CMML) and Juvenile Myelomonocytic Leukemia (JMML) Facts

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Also recently highlighted by LLS is the webinar “Clinical Trials or Standard Treatment? Understanding Options for Blood Cancers.” Audio replay, transcript and program slides are available at the link.

Topics Covered

The role of clinical trials in blood cancer treatment

How clinical trials are designed

How to determine the best treatment option for you

Talking to your healthcare team about treatment options

Speaker

John P. Leonard, MD
Associate Dean for Clinical Research
Weill Cornell Medical College
New York, NY

You can obtain more information by calling one of their Information Specialists at               1-800-955-4572 or email infocenter@LLS.org.

Remember . . .

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Join the Cancer Experience Registry

I receive numerous emails about a variety of cancer topics and subsequent treatments. I try and pass them along to you when I think they may be useful and, in some instances, provide some hope. H-O-P-E . . . that’s a big deal that’s not in great supply.

The Leukemia & Lymphoma Society is pleased to share information with you about a valuable program of the Cancer Support Community. We encourage you to read this message and join the Cancer Experience Registry and help the CLL community.

Have you been diagnosed with a Chronic Lymphocytic Leukemia (CLL), or are you a caregiver for someone who has CLL? If so, you know how important it is to share your experience with others and get information and feedback.

The Cancer Experience Registry is a place to help you make sense of your cancer experience.  The Cancer Support Community has launched a special, new community for people living with CLL. To add your voice to the Registry, just follow these simple directions.

  1. Log on to the Cancer Experience Registry. Take some time to explore the free site and see how it can work for you.
  2. Register. Then you will be directed to the CLL Cancer Registry.
  3. Fill out the questionnaire. This is your opportunity to share your experience and talk about emotional, physical and social issues. The questionnaire takes 20-40 minutes to complete. All information is totally confidential.
  4. Set up your personal page to connect to the CLL and general Registry communities (common topics for ll types of cancer), and to customize the information and updates you receive.

If need be, you can also call us at 267-295-3003 and we will walk you through the registration process.

someday is today - LLS logo

The Cancer Experience Registry is a program of the Cancer Support Community. The information you provide as a member of the Cancer Experience Registry brings power to your individual voice and to the collective voice.

Please join today at Cancer Experience Registry and share this information with your network. Together we will make a difference. So that no one faces cancer alone. ®

:: The Leukemia & Lymphoma Society, Texas Gulf Coast Chapter | 5433 Westheimer #300, Houston, TX 77056 | www.lls.org/txg |

OH, Orlando!

I have a lot of emotions running through me right now. A lot of personal, business and family matters are troubling me. Yet, I can’t let anymore time go by and not express something about the horrific tragedy in Orlando this past Saturday night.

But, words in and of themselves are not the answer. Rhetoric is fine to a degree. We do that every time one of these events hits us like a 2×4. We must not stay silent but a part of me feels absolutely numb.

Prayers are plentiful. Sorrow is everywhere. Emptiness abounds. The world is in mourning . . . again. This time in and for Orlando.

Enough, damn it! Enough! These senseless acts must stop.

But we know it won’t.

I pray that our nation’s leaders have the guts to wake up and make mature, intelligent decisions rather than their usual, pitiful politicking in doing the politically correct thing.

Just do the right thing, you morons.

Lord, grant unto us the strength and courage to endure and to find some answers.

Bless the souls who perished. Bless the souls who survived. Bless us all, good and faithful servants. Onward.

Amen!

Peace. Harmony. Solidarity. Community. Love. Pride.

 

This post is also being published on my ideasnmoreblog.com site.

June is National Cancer Survivors Month

I like the month of June. It’s my birthday month (19th), Father’s Day and this year is a month-long recognition for cancer survivors – like me (so far)!

June is national cancer survivors month

National Cancer Survivors Month was established to recognize those who have fought or are in the process of fighting the disease. During the month of June, The Leukemia and Lymphoma Society’s Texas Gulf Coast Chapter is taking time to celebrate National Cancer Survivor Month by featuring local survivors’ stories.  Join us in celebrating survivors as we also look to inspire and support those fighting blood cancers!

Want to be part of the Celebration?

Share your story with us on our Light The Night Facebook Page:

  • Like our Facebook Page
  • Post your photo and story on our page during the month of June or                                 fill out our Survivor Survey

Join us on Walk Night:

  • Survivors and Patients are our guests at Light The Night Walk
  • You receive a special Survivor T-Shirt and a White Lantern to carry proudly
  • Register to participate online or by calling 832.463.3636
Joe & Dr. Iyer (Houston Methodist Cancer Center)

This is me and Dr. Iyer before the 2015 Light The Night Walk

Save The Dates for 2016

Houston Light The Night Walk – October 8th, University of Houston

Montgomery County Light The Night Walk – October 16th, Market Street,                            The Woodlands

Risk-Care-Dream-Expect

While I was attending a special weekend seminar at The Jung Center in Houston, I walked into the gift shop and found a greeting card of sorts. I had no intention of sending it to anyone, except perhaps, personally delivering it to, well, me.

I showed it to my friend and weekend host, Mr. Felix Scardino, author of The Pebble and the Canyon, and Felix suggested a one-word tweak in each of the four lines you see below. I modified those same lines ever so slightly but the meaning still resonates.

Risk-Care-Dream-Expect

In each of the “more than” phrases, substitute “I” for “others” and see how that feels.

Let’s face it, Risk – more than I think is safe has a more profound feel to it than the way it is phrased on the card. Do we really care what others think? I’m sure we do a little, but we’re the ones who have to traverse our lives.

Both versions have an impact; putting “I” in the phrase makes it more personal and, perhaps, more meaningful, possibly even more powerful.

Dream – more than I think is practical.

It does for me, anyway.