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

 

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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.

Info for Patients with Chronic Lymphocytic Leukemia (CLL)

Hey there, World. It’s me again. Just can’t seem to get back in this space as often as I would prefer. However, this time I wanted to spread some recent news about a webinar I attended last month on my type of Leukemia, CLL.

Leukemia and Lymphoma Society logo

Sponsored by the Leukemia and Lymphoma Society (LLS), Dr. Susan O’Brien led a 90-minute session on a variety of issues pertaining to CLL, its treatments and effects on patients, as well as strides being made in medical research and clinical trials.

Here’s the link to the broadcast and accompanying materials. I truly hope this helps inform and educate some of you out there.

“Live long and prosper!”

Saints and LSU Tigers Fan Favorite Dies of Rare Cancer at 56

I didn’t plan this post as a follow up to the War on Cancer blog I just published. But as I read of the passing of Hokie Gajan (pronounced “guy-jean” as in Jean-Luc) at such a young age, I was unnerved. I’m just a few years older and, thank God, I’m beating cancer. Granted, I have a different type (CLL), but still – it’s cancer, damn it!

Nevertheless, I felt a need to pay respects to a fellow Louisianian. And a fellow Tiger.

Gajan died of Liposarcoma, a rare cancer that, according to Wikipedia, arises in fat cells in deep soft tissue, such as that inside the thigh or in the retroperitoneum. Liposarcoma is a rare type of cancer that bears a resemblance to fat cells when examined under a microscope.

Patients usually note a deep seated mass in their soft tissue. Only when the tumor is very large do symptoms of pain or functional disturbances occur.

Retroperitoneal tumors may present themselves with signs of weight loss and emaciation and abdominal pain. These tumors may also compress the kidney or ureter leading to kidney failure.

I didn’t know Hokie although I watched him play in Tiger Stadium in the late seventies when both of us were attending LSU. Later I followed his distinctive style on the New Orleans Saints’ radio broadcasts after his NFL playing days.

Evan Woodbery, NOLA.com | The Times-Picayune does a nice job in his story.

Hokie at mic

Hokie Gajan                  Hokie @LSU

Photos credited to AP Archives, Baton Rouge Advocate and WWL AM/FM

The New War on Cancer

News is not always bad. There’s some good out there; you just have to sniff it out sometimes. Such is the case with cancer.

Unlike the infamous war on drugs, we may actually be winning this war. This new war on cancer, that is.

AARP March 2016 Bulletin

AARP released a fairly comprehensive story in the march edition of their Bulletin. The state of the cancer fight is promising and hopeful. We may indeed defeat this bastard.

As for me, I’m doing alright. The only signs of trouble seem to be the allergic reactions I’m having from the chemo pills I take each day for my Leukemia (CLL). Hopefully, I can get some medicine from my new dermatologist to alleviate this.

Otherwise, I’m still fighting the various potholes into which one falls when discussing life’s challenges with insurance companies, bureaucrats and miscellaneous idiots.

Don’t you like the diplomatic way I phrased that. Trust me, I have my days when I don’t care to do anything. That’s why you haven’t seen that many posts from me recently.

When I read this AARP report, I felt encouraged and wanted to spread the word. There have been other times when reading about incidents involving people, like me, fighting with and being rejected by insurance companies that just make me livid.

I can’t dwell on the negative. It’s not healthy! The story of our convoluted health care industry is being told and needs to continue being told.

The new war on cancer seems to be moving in the right direction.

Let’s pray it progresses.

Onward!