October 27, 2014
Subject: The Blossoming Tree of Life…
… or, A Very Good Lie
I lied. I didn’t wait 8 weeks to send this email because I can report on my
progress prior to the CT scan down the road.
Where I left off with the last email, my wish that my tumors expressed the
PD-L1 marker was fulfilled, so I was able to enter my preferred study (the
ATLANTIC trial) involving an anti-PD-L1 drug (MEDI4736). AstraZeneca
manufactures this drug; other companies are testing related anti-PD-L1 drugs. Such
drugs appear to work better with less severe side effects than my alternative, a
similarly-acting anti-PD-1 drug. Even better, having the PD-L1 marker portends a
distinctly better response to these types of drugs. So, in a convoluted way, all of the
delays and false starts paid off by providing the time for the preferred trial to open.
And, again, these drugs can reduce tumor size in as little as 6 weeks. Even better, in
some cases, the immune system seems to be permanently switched on against the
cancer, as tumors continue to shrink even after the administration of the drug has
ceased. And still better, the drug may eliminate the cancer completely, something
that conventional chemotherapy cannot achieve with lung cancer.
The official study title is: A Phase II,Non-comparative,Open Label, Multicentre, International Study of MEDI4736, in Patients With Locally Advanced or
Metastatic Non Small Cell Lung Cancer (Stage IIIB-IV) Who Have Received at Least 2
Prior Systemic Treatment Regimens Including 1 Platinum-based Chemotherapy
Regimen. Only 184 subjects will be enrolled in the study, which opened
internationally in February of this year. As the title indicates, subjects must have the
worst stage cancer and two previous chemotherapy treatments. With my added
radiation and simple pill treatments I could have been concerned about being overqualified. But, seriously, those are some highly undesirable criteria to meet.
However, if that’s what it takes to be enrolled, so be it.
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Why do I go through all of these treatments? As I heard myself saying to a
friend recently, it’s not that important to me that I live. (No one lives forever.) It is
that important that I give it my best shot.
I recently caught the very end of the movie, American Beauty. The final
voiceover from the deceased protagonist rang true on a few levels…
“I guess I could be pretty pissed off about what happened to me... but it's hard
to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm
seeing it all at once, and it's too much, my heart fills up like a balloon that's about to
burst and then I remember to relax, and stop trying to hold on to it, and then it flows
through me like rain and I can't feel anything but gratitude for every single moment
of my stupid little life. You have no idea what I'm talking about, I'm sure. But don't
worry. You will someday.” Alan Ball, screenwriter
Clinical update section
I’ve been dosed 2 times, have enjoyed what’s been called the celebrity style
(flights/limo) treatment, and am over 3 weeks out since my first infusion. Prior to
treatment my breathing capacity continued to decline to the point where I had to
haltingly ascend our stairs – taking each step slowly and still being winded at the
top. Within a week and a half I noticed a distinct improvement based on this
Flagstaff stair test! At this point I’m barely breathing hard after ascending normally.
I have a long way to go, but WOW, starting as soon as a few days! And my energy
level is the highest it’s been in months. All this in less than a month!
Very oddly, when I lie on my stomach I can sometimes feel a sensation in my
lungs. So strange and unusual! I can only assume it is a result of resorption of the
tumors. One night the sensation was so strong and somewhat painful that it
awakened me. I fell back asleep wondering if maybe something was amiss, but I felt
fine in the morning. These are somewhat familiar sensations, but it took my favorite
doc and nurse, Dr. Weiss and Lisa, to remind me that I experienced them in the last
clinical trial which served me quite well.
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Almost as remarkable as the improvement in my breathing is that this
wonderful outcome occurred without the cost of ANY side effects. None. Zero.
Amazing, simply amazing!
How confident am I? Well, I just bought a new phone and a new car. I expect
to be filling your mailboxes for quite some time.
Over the past few months I’ve received some more remarkable responses to
my emails. They manifest the enormous benefits of opening one’s heart to others.
Many express universal lessons and affirmations.
One great friend wrote this profound description of her reaction to
wonderful “coincidences” in her life: “I find I get unexpected comfort from the
thought that events align in ways that support my desired actions and outcomes. It
has made me start thinking about the biology of religion. As events move more out
of our control, at least my acknowledgement of the spiritual and holy increases. Or
at least my desire for a spiritual and holy realm increases...” She echoed my
sentiments about caregivers and included this quotation. “For there is nothing
heavier than compassion. Not even one's own pain weighs so heavy as the pain one
feels with someone, for someone, a pain intensified by the imagination and
prolonged by a hundred echoes.”
Milan Kundera, The Unbearable Lightness of
Being
Another special friend frequently responds with heart- and mind-felt
messages. “Your view and attitude which I see as developing and persevering
through your struggles, comes after removing the hindrances - hindrances such as
resentment, self-pity, anger, giving up, all of the bad feelings and attitudes that may
come with your plight. You have my appreciation - not for the miracles that you've
seen as your cancer comes and goes - those are from a greater source than you, but
for your steadfastness on getting beyond the hindrances so that you understand and
can share the deeper sense of life. Although, you may sense that getting beyond the
hindrances are also miracles. I in getting rid of the hindrances found in
disappointment - I found faith… after getting through the hindrances of pain, fear,
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anger, all of it, I found trust, and with that freedom. Having pain without the
hindrance of fear gives me clarity on my passion.”
And yet another great friend had this to say. “Another observation you made
[in addition to needing a positive mental attitude] and with which I fully concur –
‘coincidence.’ You are right coincidence is a lot more than chance. This I have
experienced firsthand, enough to teach me that patience is the required ingredient.
Seldom can we see the end game from our current vantage point. That is where the
faith part comes in.”
A remarkably gutsy and strong cancer survivor friend kindly reaffirmed my
list of 7 elements required for survival and added this sagely advice: “Live each day
to the fullest and appreciate what you have and control what you can and forget
about what you can't control.” Of course, this is much more than just cancer survival
advice.
I am so exceptionally blessed with truly remarkable friends and family. That
you share your spirits gives us all strength. Plus, I continue to receive extraordinary
gifts. I confess to misting when a special friend presented me with a handmade Tree
of Life quilt for my birthday. Each piece of cloth, save for the border, has some type
of arboreal pattern. It warms me in many ways.
In closing, a couple of quotations…
“If you don't go after what you want, you'll never have it. If you don't ask, the
answer is always no. If you don't step forward, you're always in the same place.”
Nora Roberts
“Beliefs are the roads we take to reach our dreams.” Jodi Picoult
With everlasting love, gratitude and faith,
Jim
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November 24, 2014
Subject: What Are You Thankful For?...
… or, Gobble, Gobble
I’m very pleased and thankful to be sending what has become an annual
Thanksgiving message. Before going further, since this is another rather lengthy
posting, I’ll cut to the chase and begin with the clinical update section. My immune
system feels to be slowly, but steadily, gobbling up the tumors. My oxygen level
keeps rising, my high altitude stair climbing keeps improving and my energy level
keeps increasing. I’ve had four treatments, and each time I return to Goodyear, AZ I
notice the improved ease in navigating through the airport each visit. It might sound
to be a small victory, but to me it’s quite huge, especially knowing that in two weeks
it will be even easier, maybe even so easy that I don’t notice. I’ve been told by a few
people that the color has returned to my face, which is great to hear especially since
I never realized how much of a paleface I was.
As I’ve mentioned many times, I owe this success to many, including all of
you. Especially to Vicki and Ned and our families. And I’d like to particularly
recognize the health care personnel that so amazingly and selfishly extend the lives
and quality of life for so many. The field of oncology is as replete with heartache as it
is with celebration. It takes special souls to extend hope to those who travel
enormous distances with great discomfort in search of such hope. I share limo rides
with these believers, these heroes of survival. I thank them, too, for their inspiration.
The blessings afforded by my new treatment entail far more than just the
side effect-free efficacy of the drug. Having to fly alone means that I don’t disrupt
Vicki’s life with long drives and tedium. With every previous treatment she insisted
on being by my side. This time, even more significantly, she doesn’t have to deal
with me feeling and acting lousy or even fatigued. I have lots of energy and can be
pleasant.
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On another note, I’d like to recognize a couple of courageous and inspiring
young women who have been in the news lately. Both shared their cancer
experiences for the benefit of us all.
Brittany Maynard, a 29-year-old terminal brain cancer patient, ended her life
in Oregon before the seizures, excruciating pain and toll on her loved ones
progressed any further. She knocked off a number of adventures from her bucket
list in her last few months alive. She had this to say about a few weeks before her
passing... “Seize the day. What’s important to you? What do you care about? What
matters? Pursue that. Forget the rest.” She added, “I think anybody that’s impacted
by a major tragedy like this… you begin to see the beauty in each day. But I really
tried to do that anyway. Beyond illness no matter who you are, it’s important to
slow down and appreciate what’s good in your life.”
Cancer recently took the life of MTV reality star Diem Brown at age 34. She
was first diagnosed with ovarian cancer 9 years ago. It returned 2 years ago and this
past August cancer invaded her stomach and colon. Earlier, she had wonderfully
created MedGift.com – a registry for ill people and their friends and family that
operates like a bridal registry. A simple, creative, enduring endeavor. “MedGift is the
complete resource tool for those facing a health related hardship or need. MS,
Cancer, Elderly, Autism, Memorials... whatever your health related hardship or need
might be, MedGift is here to help support you through your journey ... Financially,
Physically and Emotionally with our free online support tools.” (excerpted from the
website) What a beautiful legacy!
I continue to enjoy the many responses to my updates. One message
expressed my sentiments exactly. “I am honestly grateful to be breathing the same
air as these articulate thinkers and emotional warriors.“ I count this fine friend
among them.
One of the responses that I shared in my last email, “I find I get unexpected
comfort from the thought that events align in ways that support my desired actions
and outcomes,” resonated with another. He wrote, “[This one line] has really been
true for me and is a foundational premise of most advanced philosophies. You are in
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fact the creator and your collective intention which is both conscious and
unconscious is always fulfilled. So much of our conscious attention interferes and
creates the stress. Letting go and enjoying the ride and always being surprised is the
joy of life… Our intents drive what becomes manifested. Some call it faith, faith in
God, Universe ...etc.... Our being is comprised beyond our conscious awareness so
that’s why many times, outcomes seem at odds with our intent. They really aren't.
We get what we truly want. Sometimes what we want is deep seated and differs
wildly from what we claim to want. Belief in religion of any form or style liberates
our addiction to perceived control. Meditative prayer sets the true intention of the
being, because we are the reflective experience of the whole we have access to how
that is manifested by our intent of the experience we desire. That is the whole point
of existence and awareness.” Wow! Just wow!
The reference to American Beauty inspired another great friend to share one
of his favorite movie lines, one from Joe versus the Volcano: “My father says almost
the whole world's asleep. Everybody you know, everybody you see, everybody you
talk to. He says only a few people are awake. And they live in a state of constant total
amazement.”
I was touched and humbled by the words of one of my great childhood
friends who responded to the closing voiceover of American Beauty…
“Wisdom abounds in the miracle of each moment.
Each moment well worth the ‘fight.’
The eternal fight for the light of love
Endures in each man either for or against.
I stand with you as we all do.
Keep up your fight brother.
We fight with you and for you.
As you do for us.”
That voiceover prompted a number of responses. A wonderful friend of
Vicki’s who has supported me in many ways over the last few years, and is thriving
through her own health issues, had this to say. “The feelings expressed (and you
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quoted) from American Beauty I feel all of the time. I know exactly what he is
talking about. Maybe a gift from the illness and knowing now that there is so much
given to us that we usually (or in the past) didn't take time to take in. Faith for me
now is knowing that no matter what happens, all is truly well.“ She added, “And, I've
said for years - You don't ask, you don't get. That's for sure.” Indeed!
I’m thankful for so much. For the generosity of so many people. For so many
more days. For so many experiences and emotions. Love, hugs and laughter reign at
the top of the list, along with tears.
In closing, saying thank you can seem so much of an understatement, but
please accept that it is expressed from the depths of my heart and soul. Joy abounds
and engulfs me. To envision many seasons to come is a blessing beyond my
expectations. It’s pretty darn cool!
With everlasting love, gratitude, thankfulness and thanksgiving,
Jim
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December 2, 2014
Subject: An Early Christmas Present…
… or, I’m (Almost) Speechless
This will be short, I promise! Well, shorter is probably more accurate. Today I
received the first CT scan results since beginning the new treatment two months
ago. In the words of the radiologist’s report, the scan showed a “dramatic reduction
in size” of the large tumor!!! The decrease was a little over 60% in the largest
dimension, or about 80-90% in volume! I’m awestruck. Even Dr. Weiss was
surprised by such a strong response so soon. I’ve always responded well in the past,
but this is crazy!
I’ll take this opportunity to pass on some odds and ends, starting with a few
quotes…
“Let go or be dragged.” Zen proverb
“The only safe thing is to take a chance.” Mike Nichols
Good friends sent these along…
“Though no one can go back and make a brand new start, anyone can start
from now and make a brand new ending.” Carl Bard
"The free soul is rare, but you know it when you see it – basically because you
feel good, very good, when you are near or with them." Charles Bukowski
A good friend described how he met a former CEO of a few companies who is
now heavily involved with the Big Brothers Big Sisters organization. This gentleman
explained that he has evolved from a life of accomplishment to one of significance.
What a great attitude.
Yet another good friend weighed in on his thoughts about coincidences. “A
life lead in concert with, acceptance of and appreciation for the underlying, natural
and beautiful rhythm that surrounds us is a life fulfilled. Amazing ‘coincidences’
begin to occur, and these wonders we experience are the blessing of a life led in
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concert with these ‘rhythms.’ If Buddhists see these rhythms as the underlying
clarity in a swirling stream of thoughts but Christians see them as ‘God,’ so be it. As
long as they are both paying attention and living in concert with those rhythms.”
I receive many messages about love and spirituality…
“I love that life spans everything from the mundane to the divine.”
“As someone said on the radio yesterday .... life is all about love...”
“God's greatest gift is love. And it is obvious you are surrounded by his love
everywhere. What a blessing!”
Yes, I am fortunate in so many ways. I wrote this to a good friend who is also
dealing with cancer… “Isn't it amazing that we give thanks despite the cards we've
been dealt? Such blessings!” I’m not bragging, rather I’m commenting about the
wonders of life and the greater forces that engulf us.
Thanks to many of you, I am reading and watching videos about spirituality,
religion and past life issues. The non-fiction ones probably impact me the most,
though I take away wisdom from all, if only to challenge and reinforce what I
previously believed. High on the non-fiction list for recommended reading are:

Proof of Heaven: A Neurosurgeon's Journey into the Afterlife Eben Alexander

The
reincarnation
story
of
James
Leininger
http://www.iisis.net/index.php?page=semkiw-reincarnation-jamesleininger-carol-bowman (see also the Anne Frank story link on that page)

Many Lives, Many Masters Brian Weiss

To Heaven and Back Mary C. Neil
Ever grateful for the abundant blessings and sending love, health and joy,
Jim
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at
p.s. I did update my mini-memoir about the journey so far. You can find it,
Sometimes God Throws a Brick, and the latest version of Cancer Treatment Advice in
the books section of my website, jamesdlewis.com.
p.p.s. Just in case you might need to be reminded today, you are all very special
people. It’s an honor to “speak” to you.
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January 27, 2015
Subject: A Splendiferous Rainbow…
… or, Enough Already with All of the Questions
Vicki witnessed a perfect omen this morning in Flagstaff prior to us receiving
the results from yesterday’s CT scan. A full and brilliant rainbow formed over our
house, something we’d never seen before. It boded well for the outcome of the
second follow-up CT scan, which was 4 months since my initial treatment. My
situation is stable, no changes from last time. The tumors are still very small. And
I’m still devoid of side effects. Woohooo! My doc is very pleased, as are we. My
outcome is so remarkable that the marketing folks at the center have threatened to
recruit me for participation in a commercial. I’ve not heard from them yet. If it
comes to pass, I’ll be happy to publicize this form of treatment, knowing full well
that I’d never hear the end of it from many of you. Payback can be quite costly.
So, looking back, I made the right choice of clinical trial. My doc even
confirmed that today. Holding out until I could barely breathe upon exertion in
Flagstaff, waiting for my biopsy results to come in, hoping they would gain me
entrance to the study, was the right call. The other studies might have been as good,
but certainly couldn’t have been better for me. And I would have either not had the
attention and care of my favorite nurse or I would have had to take another pill for 2
months (which might not have deterred the progression of tumor growth) before
receiving this wonder drug and I would have had to suffer routine biopsies. I do
regret, however, subjecting Vicki to my vacillation and consternation that led up to
my enrollment in the study. So, yes, I made the right choice, but I now know that far
more is at play than just me making a decision. As I have come to learn, and many of
you have attested to, there are no coincidences. There have been far, way far, too
many good outcomes falling into place for them to be coincidences. Everything
happens for a reason. I don’t know exactly how or why, but I’m wholeheartedly
grateful. But I do know this, “Now faith is confidence in what we hope for and
assurance about what we do not see.” (Hebrews 11:1)
The best part of this journey is that I'm beginning to become the person I
always hoped and intended to be. I just didn't imagine that this would be the path to
get me here. That said, I can also understand why others don’t go to the lengths that
I have. I still don’t look at my saga as a fight. Many seem to have this notion that it’s a
battle. Sure, it can be if you look at it that way. And that’s okay. But it’s not okay to
consider the afflicted who don’t engage in the so-called battle as somehow lacking in
courage and strength. And it’s not okay to judge people if they’re fearful. No, they’re
simply choosing how they wish to live. Courage takes many forms. It’s just like I’m
not out travelling the planet or engaging in wild activities, trying to live it up before I
die. I’m just living each day as much as I can, like I did before, just with a few more
distractions, limitations and encumbrances placed on loved ones. But, it’s all good.
Because of my situation I’m extremely fortunate to engage in significant
conversations with people almost immediately, even with complete strangers. It’s
especially true during my twice-monthly plane and limo rides. We often exchange
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tiny tears… not tears of sadness, rather, tears of shared understanding. How cool is
that?
Acclaimed and well-loved sportscaster, Stuart Scott, passed at the beginning
of this year due to a rare form of cancer, seven years post-diagnosis. He framed the
“battle” differently. Upon accepting the Jimmy V Perseverance Award last year he
had this to say. “When you die, it does not mean that you lose to cancer. You beat
cancer by how you live, why you live, and in the manner in which you live.” Which,
of course, applies to all manners of living.
As I wrote to a good friend, I'm flattered to be able to share my adventures
with all of you. I could never have anticipated sharing them, especially in writing,
much less deriving so much learning and satisfaction from doing so. Even more
astounding are the numerous blessings bestowed upon me from so many varied
sources. I realize I know very little, yet I feel I possess much greater understanding,
as ineffable as it is.
Living with a terminal illness does cause you to reflect more than you did
before. Consider what Steve Jobs said after living with cancer… “I began to realize
that an intuitive understanding and consciousness was more significant than
abstract thinking and intellectual logical analysis.” The questions you ask yourself
and others tend to become headier and more spiritual. The answers might not be
any clearer, but it feels fulfilling to ask. I recently watched the ending of the movie,
Contact, in which the protagonist says, “I was given something wonderful.
Something that changed me. A vision of the universe that made it overwhelmingly
clear just how tiny and insignificant -- and at the same time how rare and precious
we all are. A vision... that tells us we belong to something greater than ourselves...
that we're not – that none of us -- is alone.” I like how the fundamental conundrum
that encompasses what we call life was so wonderfully expressed. It’s no answer,
but it’s a question that feels satisfying to me.
Just two days after seeing Contact unity rallies took place in Paris and all over
France in response to the terrorist attacks. The remarkable gathering numbered
over 1.5 million people in Paris alone, with over 40 world leaders from countries
including of France, Germany, Spain, Britain, Palestine and Israel walking arm in
arm, leading the way. I loved listening to Vicki throughout the day… she was
delighted with the significance of the marches. What better manifestation could
there be of the sentiment and message expressed about us in the quotation above?
These concepts and events are consistent with living a life of significance, as
mentioned in my last email. That notion struck a chord with some…
“A few things you said in this message resonated with me. I've been on a bit
of a personal journey myself of late. Mine wasn't spurred by any life threatening
event but more one grounded in the importance of living a life that is more
significant. And more aware. Every day I believe more strongly that there are
absolutely no coincidences in life. None! Everything has significance and meaning.
Life events, both good and bad, absolutely happen for a reason. It's my job to 1) be
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aware of them (some are subtle) and 2) . . . perhaps the most difficult . . . make sense
of them and apply them to my life. And maybe the most challenging piece so far is to
focus on being present; in the moment. Life is truly a present and I'm trying to figure
out the best way to unwrap it. Here's to significance, friend!”
Another great friend wrote, “I feel these days, that I've reached an apex of
sorts and while I've always been ‘looking’ I feel a greater need to do something
worthwhile with the rest of my life. That don't mean I won't go slumming with you
though.”
Giving of oneself to help others is a hallmark of significance. The Today show
hosts were asked to offer advice for others for the coming year. It’s an interesting
twist on the standard New Year’s resolution. Savannah Guthrie had a great
response, I think. Do: Practice gratitude. Don’t: Lose sight of what’s important. After
reading about that I awoke in the middle of the night thinking of the following
advice. It’s advice I’m striving to follow myself. Find a way to answer “yes” to all that
is requested of you. (And its corollary, try to find a way to turn the negative as
positive as you can, while retaining an honest response.) That lead me to recall the
quotation, “Whether you think you can, or you think you can’t, you’re right.” I
couldn’t recall who said it, so I got up and turned on my laptop. The author was
Henry Ford. He also said, “There is no man living who isn't capable of doing more
than he thinks he can do.” Philippe Petit, the man who walked the high wire
between the Twin Towers said, “Limits exist only in the souls of those who do not
dream.” But, I digress. So I ask you, what is your do and don’t advice?
I’ll wrap this up with a couple of quotes and questions:
“Doubt is not the opposite of faith; it is one element of faith.” Paul Tillich
Local Hopi artist, Ed Kabotie, described his drawing, Path to Mountain, as
“illustrating the universal journey of life: from conception to dysfunction, from
destruction to restoration, and ultimately... to balance.”
What was your childhood dream? Is it still a beacon?
With love, gratitude, and questions,
Jim
p.s. For those who are interested, I’m attaching an Addendum that provides a more
thorough description of immunotherapy.
ADDENDUM
Genentech, Bristol-Myers Squibb, Merck and MedImmune (AstraZeneca) are
among the companies conducting clinical trials, testing their engineered anti-PD-L1
antibodies. These drugs are successfully treating a variety of cancers including lung,
melanoma, kidney, colorectal and gastric cancers, despite their recurrence after
several previous treatments of other modalities. Two such immunotherapy drugs
received FDA approval in 2014 for the treatment of advanced melanoma.
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Tumor shrinkage occurs as early as a few weeks, but even poor initial results
do not preclude excellent results long term. Patients who have the PD-L1 marker
respond significantly better than those without it (in one study, 36% versus 13%),
but for reasons unknown the treatment has still been found to be effective in those
patients without the marker. Early results suggest that the treatment partially or
completely shrinks tumors in 20-35% of patients. About 2/3 of patients remain in
remission a year later. (These figures are rough estimates based on my cursory
review of the literature.) Cancer immunotherapy was hailed as “the breakthrough of
the year” by Science magazine in 2013. It is not only a highly effective treatment, but
it also is a dramatically more benign treatment than conventional chemotherapy or
radiation.
The following specifically describes the Genentech offering. “PD-L1 is a
protein frequently overexpressed on the surface of cancer cells that acts as a
disguise, allowing cancer cells to hide from the immune system. When MPDL3280A
attaches to the PD-L1 protein, the cancer can no longer hide from the patient’s
immune system, allowing the body’s T-cells to fight the cancer.”
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