David's Reflections
Cancer…
On Friday, November 18th, my oncologist said, “you have metastatic prostate cancer,” then… “prognosis is not good,” (not those exact words, but that was the message between the lines), then…“probably five years.”
I know there were words and questions before and after that, but that’s all that seemed to get through.I’ve watched it on TV. I’ve read stories. I’ve leaned in as friends and family members told me their “hearing the news” story. But somehow I felt immune to being a recipient of such news.
We left the doctor’s office in shock, not only about the stage of the cancer, but possibly more disillusioned by the suggested treatments the oncologist recommended we begin immediately. It was a long drive home with many tears shed before we surrendered to fitful sleep that night.I feel that I could write half a book on what we have learned and experienced in the just the last 9 days, but here are some standouts:
I don’t think I could be married to a more loving and supportive person. Kathi’s been passionate for decades about helping people achieve optimal health and find healing from disease. She is in this with me, and her hope and optimism is palpable. Kathi, you’re amazing.
We are not seeing this as a fight against cancer, but as a journey toward healing my body. The journey will be a deep dive into mind, body, and soul healing. They will all play a part. We’re researching integrative curative methods from all disciplines, ones vetted by both science and our intuition.
We will take massive action to help my body heal. We will work with my body, not against the disease.There will be some good days and some bad days. My life will never be the same, but in some ways that will be truly be amazing.A cancer diagnosis has already helped me begin to sort out my priorities.
I want to live, and I want to live with a renewed clarity of purpose. I want to grow old with my wife, kids and grandkids. I want to be a storyteller for a full lifetime. I want to more fully appreciate time with my family and friends. I want to be more curious, loving, peaceful, to find God in places I’ve never thought to look before.
And to you, my Facebook friends, I want to watch you travel the world, enjoy great food, cheese it up with family and friends and hear about ways you find and follow the way of Jesus in everyday life. I love you all, and Kathi and I are grateful for all the support we have received already and will receive in the future.I’ll be sharing more in the future…
Scanxiety…
I’ve had several people suggest that I journal my thoughts as Kathi and I walk this new pathway toward what we believe will lead to our healing.
So here goes…
As you’ve read, I’ve titled this first post Scanxiety. It’s a type of anxiety new to me, but well known by others who have walked this path before me. I suppose the definition of the word is rather obvious. It's that deep emotion while awaiting “the news.” There are multiple scans. CAT. Bone. PET. I’ve had them all, each bearing tidings of not-so-joyous news to my world. In fact, really bad news. With just one doctor’s visit, my world changed for the rest of my life, kind of like getting a call from your CPA and finding out you owe a million dollars in taxes rather than a thousand.
Many of you have been there. I now have a new understanding…new empathy.
The CAT and bone scan typically give an almost-complete picture. But if there is anything suspicious, they bring in the big gun: The PET scan. Such an approachable name, but oh, don’t let that fool you. He’s a mean one.
Especially if you’re claustrophobic!!! I repeat, ESPECIALLY IF YOU’RE CLAUSTROPHOBIC!!!
Certain spaces are quite literally my Kryptonite.
You’ve probably seen pictures. It’s a fairly large tube, about 6 feet long, 3 feet in diameter. It’s essentially a radioactive rotisserie where you lie on a metal bed, get inserted and radiated ‘til “done.”
Back to my experience…
An hour before they got started, the friendly nurse brought in a lead box with a $16,000 shot that, once injected in my arm, would make my cancer “smile” for the camera (if that could only have been injected in my bank account $$$).
Next, they asked me to drop my pants (no zippers allowed), I climbed aboard, got covered up, then received last-minute instructions before descending into the dark tunnel. It’s only a 6-foot tube, but to me it was bigger than a 60-foot keyhole chock full of “muunstas,” as my granddaughter Caylee calls them (she lives on Long Island).
The journey begins. The Machine says, “this will only take 22 minutes.” I can do this. First, it runs me through a couple passes - in and out rather quickly. I can do this! Or, so I thought.
The Machine is a cunning bastard!
I was shuttled all the way to the top end to begin my slow descent into the abyss, feet first. I moved down about 6 inches and lay there with my whole life flashing before my eyes for an eternal 2 1/2 minutes. My personal conveyor belt of incremental terror.
I can’t do this!
I may sound glib now, but my fight-or-flight instinct was ready to launch at any moment. The slow descent continued. I tried deep breathing, picturing a beautiful ocean scene, thinking of my wife, kids, grandkids, my cat…anything. But at each 2 1/2 minute interval. Movement. Anxiety ratcheting up.
I was told the Machine would be listening the whole way. After 10 minutes, – READ: ten hours – I desperately needed some conversation; even the Machine would do at this point.
“Hello.. Are you there? Ah, I didn’t tell you, but I’m like, you know, really claustrophobic. I’m really struggling here as my head is about to go inside.” (the abyss), I said, with fake calm.
The Machine said, “Don’t worry, you’re doing fine. Only 10 1/2 half more minutes. You’ll be done in no time. Just relax.”
“Hey Machine, I’m NOT doing fine here! Ten minutes! Ten hours! No difference! I’m about to start thrashing wildly.
After a beat, The Machine said, “I can get your wife, if you’d like.”
A sense of relief came. “Ah, yes please!! And like RIGHT NOW would be great,” I said, with desperation as my head was about to be completely submerged in the dark tunnel.
In a moment, Kathi came in and started to caress my pinned-back arms. Her touch and presence was a palpable relief. I think she was quick to notice that I was at a legit DEFCON 5. Her words soothed me.
She said encouraging words, sang a bit, then said, ”All shall be well, and all manner of things shall be well,” a quote from 14th century Christian Mystic Julian of Norwich that I had heard a few days earlier and had shared with Kathi (yes, I know I’m a bit nerdy). Side note: Julian was on her deathbed, last rites had been given, but then she had a vision of Jesus. These were some of the healing words she heard. She went on to live 33 years after that. In fact, she went on to become the first woman to have a book printed in the English language.
Anyway…
Kathi just repeated those words over and over. ”All shall be well, and all manner of things shall be well.” Some calm came to my revving soul, even though I was literally shaking.
By now, I was fully engulfed by The Machine.
Kathi whispered over and over, “We are in this together, we are in this together, we are in this together. All shall be well, and all manner of things shall be well.” Repeat. Repeat. By now, I knew I could make it.
I had decided to keep my eyes closed for the final 12 minutes. It helped so much to not see the dark abyss and the “muunstas.” It was also so helpful to be seen by someone whom I know loves me. Fully. Completely. Someone who could see the light at the end of the tunnel for me.
It was at this moment that I fully realized this was not my journey, but our journey. We are one as never before. We will go through each moment, each decision, each difficulty, and each joy, together.
And yes, The Machine finally surrendered me, and with a parting gift, no less. In its bowels I learned anew that it is only love that will sustain us. It is only love that sustains us as we pass through the “shadow.”
Epilogue. (As if this wasn't long enough)
I’ll say more about the test results in Scanxiety, Part 2. But I will say this: The Machine reported HEAD: PHYSIOLOGIC UPTAKE IS SEEN IN THE BILATERAL LACRIMAL GLANDS. Kathi and I frantically googled this medical speak, and to our relief found The Machine’s findings were not at all ominous. This visible ”uptake” was probably liquid from my tear glands. The machine saw my tears! I know, right! Maybe it’s not such a scary “muunsta” after all.
Scanxiety, Part 2…
I have been blown away reading the many positive, super encouraging responses to my first journal entry. Thank you. So, I’ll keep writing about my walk on this new pathway to healing.
Leaving my near death (LOL) experience with “The Machine” behind us, we drove home to begin the even more excruciating version of Scanxiety—waiting for the results. Given that the purpose of the scan was to confirm the bad news, and possibly deliver really bad news, sleeping wasn’t easy.
Early the next morning the oncologist called. I missed it. My ringer was off. “Oh fat, oh stink, oh fat stink!”, as my dad used to say. (When we heard this as kids, we knew dad was really mad. And it didn’t take long for us to realize that these were tame Christian versions of two other, never-to-be-uttered words that begin with “S” and “F.” It makes me wonder if part of my dad’s penance before entering Heaven was St. Peter insisting he let a few “F” bombs fly.)
Anyway, a couple hours later we had the oncologist on the phone. Clearly, he blew off Bedside Manner 101 in Med school. I barely started my attempt at small talk…“You know, we were wondering about having a genetic test for the sake of my kids…” before he lunged into the report delivered by The Machine. “So let me tell you what we’ve now confirmed…” I feel certain that The Machine ratted me out on the quivering cowardice I displayed deep in its belly, prompting the doctor’s curt tone.
Trying to track with him reminded me of hearing Charlie Brown’s movie conversation with his school teacher.
One thing came through the indecipherable medicalese loud and clear: I have received a diagnosis of Stage 4b Metastatic Prostate Cancer. On a scale of 1 to 10? A 10-plus. Having confirmed the suspected bad news, the doctor then offered the good news—it’s not in my bones. Audible sigh of relief. (Kathi and I, not the Doc )
I’ve learned that there are 4 stages of cancer. Here’s how I’ve put it in terms I can understand.
Stage One: Cancer buys a home in a housing development (an organ in your body). You regularly bring him (preferred gender pronoun) Krispy Kreme donuts and lots of hot dogs (meaning your sugar and processed meats of choice). This makes him fat and happy. Over time he continues to grow.
Stage Two: Cancer loves his new digs, and he decides to buy up multiple properties in that subdivision (same organ). Before you know it (literally), he starts enticing new family members (cancer cells) to move in rent free. “And not only that, you can get all the Krispy Kreme and hot dogs (sugar and processed meats) you can eat.”
Stage Three: Cancer has filled one subdivision (organ) with family and friends (cancer cells). To keep them happy, he must start expanding to accommodate the growth. He’s ready to move on up, break ground on other subdivisions (organs) and co-opt the region's roads and highways (the lymph system) to make it happen.
Stage Four: Cancer, a total family man, has now purchased homes in multiple subdivisions (other organs) and has cut a deal with the transportation authority (lymph system) to allow his family toll-free travel to their subdivision of choice (metastasis). A new promised land (other organs and lymph nodes) lies before them, flowing with Krispy Kreme and hot dogs.
That just about covers it. (Steve Taylor and Joel Limbaun—If you’re reading this, perhaps one of you could create an animated version.)
A diagnosis of Stage 4a means that cancer is in lymph nodes near the organ where the cancer started. Stage 4b means it has spread to lymph nodes beyond close proximity to the cancerous organ.
I received a Stage 4b diagnosis. That’s the bad news. The good news is that the “involvement” seems to be only one lymph node near my stomach.
To wrap things up, the doctor said slowly and quite emphatically, “You Must! Must! Must! Must! (count them, four) start ADT treatment immediately.” I think we got the picture somewhere between the second and third “Must,” but he threw another one in for good measure.
ADT stands for Androgen Deprivation Therapy. I suspect this ADT is actually something The Machine cooked up. I’ll write more about ADT later. (Read Scanxiety Part 1 for the scoop on “The Machine.”)
A baseball analogy helped Kathi and I get perspective once the Doc ended the call. It’s like our team is down by one in the bottom of the ninth. Not good! But our team happens to be the Philadelphia Phillies. Go Phillies! And with 3 men on, no outs, Bryce Harper is stepping up to the plate.
We still have high hopes for the future.
I've got Sushi...
Cancer. A weighty, ominous word that’s associated with so much suffering and loss. The “C” word.
Each of us can likely tell stories of loved ones whose life or quality of life was cut short by cancer. My dad died at 77 from prostate cancer that had metastasized to his bones. Mom had lymphoma, and part way through her fourth round of chemotherapy her body could take no more. She was 87. A rare form of pancreatic cancer took Kathi’s dad from us at 67. He weighed 120 lbs. Heartache. Loss. Unanswerable questions. We’ve all experienced such losses.
We all have stories.
The American Cancer Society reports that in 2022 over 600,000 people will leave an empty chair at the table this Christmas. About 34,000 of those will be men who had prostate cancer. Another 42,000 will be women who died of breast cancer. Too many!
We have three amazing grandkids–Aria, Theo, and Caylee. Seven, six, and two, respectively. We’ve been very careful to not say the “C” word around them. We quickly realized that the “C” word has a vague but dark story attached for Aria and Theo. In Caylee’s world, cancer, war, hunger, hate, death, etc, have no meaning, no context that can penetrate her innocence. Maybe that’s why we need to be around these little people. We must learn from the innocence glowing in their eyes, maybe even try to see the world through their eyes. As they melt into us with their loving embrace, allow their warmth to soothe life’s heartaches.
A few days ago Theo heard me let the “C word” slip out. He immediately asked Kathi, “Is Pop Pop going to get cancer?” Kathi avoided a direct answer with some verbal sleight of hand. After a pause, he gleefully returned to harassing his sister.
Close call.
So how do we talk about “it.” How do we protect vulnerable little ones? How do we protect ourselves? Is there any way to disarm this dreadful word?
How about a code name, or maybe even a pet name? Seriously?! Yes, why not? I will never trivialize cancer, but let’s somehow take the edge off.
Somewhere in the pile of materials we’ve been pouring over, Kathi read about a person who suggested just that. A pet name. They chose Sushi because it was something they liked to eat. Sushi also worked for me–I thought it best to choose something I’m not particularly fond of.
So Sushi it is, especially around the grandkids, and even, at times, the grownups. (No doubt Theo is now wondering why all the adults have taken a sudden liking to Sushi.)
So for now, this is how we roll!
Let’s go with Plan B…
Kathi and I have heard so many stories of people who, after months or years of cancer treatment in the traditional medical community, were sent home with only weeks/months to live. But, in a last ditch effort, they found healing through nutrition and non-toxic treatments.
Plan A failed. Plan B miraculously succeeded. We’ve decided to go with Plan B.
The grim treatment options and prognosis our oncologist offered gave us all the motivation we needed to pursue a path toward healing that would attack my cancer, not my whole body. This is certainly not a concept that is new to us, especially Kathi.
My cancer is a disease, but maybe more importantly, I’ve learned it’s a messenger. It’s telling me something is wrong with the way I eat, my lifestyle, or my environment, and that things must change, or else. As my wonderfully crazy vegan friend Arnold says, “your prostate loved you so much that it absorbed a lot of bad stuff over the years and is now telling you things need to change - now!”
It seems that the traditional, evidence-based medical approach is focused on shooting the messenger rather than dealing with the root cause of why cancer forms. And for me, why my cancer is so aggressive.
Imagine if Tom Hanks in Apollo 13 said, “Houston, we’ve got a problem,” and Houston just turned off his oxygen supply. No more messenger, (or Woody) but there is still a big problem. This may be too simplistic, but I’m convinced it holds much truth.
We had the makings of a plan when I started writing a few weeks ago, but now it’s crystallized. Here is what we’ve been doing in the last month:
1. Started a plant-based diet that quickly morphed to mostly raw vegan (Sorry, Arnold)
2. More supplements than you can imagine
3. Cold pressed juice, juice, and more juice
4. Green Tea, Essiac Tea, Sir Jason’s tea
5. Smoothies. Lots. Delicious.
6. Vitamin C and Ozone infusions, Ozone dialysis, multivitamin infusions, lots of guidance and love from the amazing people at Meeting Point Health. They even give us hugs.
7. Rebounding (no Christmas tree, because we put it where our tree normally goes)
8. Monstrous green salads
9. Infrared Sauna - tons of sweating not optional
10. All kinds of other healthy stuff that our wonderful friends keep bringing to our door
And more…
Our friend John Malki advised us to “throw the kitchen sink at it.” Challenge accepted. Kathi has been amazing. At 100 MPH she’s learning a whole new way of cooking. Our kitchen and family room often resemble a hurricane zone. The cat loves all the boxes and debris.
And…
We leave on January 1st for three weeks at Hope for Cancer, a natural healing clinic in Mexico.
Phew, that’s a lot. We often feel exhausted, but also energized. Empowered even! And so much of that has been because of the support and love from all of you.
As I say virtually every day, “I’ve never felt more loved in my life!”
The H card...
Back in late November Kathi and I walked through the doors of Meeting Point Health and in a moment we knew we had found a place of healing. In a warm, inviting room we engaged with co-founders Dr. Stephen and Mary Anne Matta. Right away we felt part of the family. We wanted them on our team.
They explained their holistic approach to cancer care. Their website explains it this way:
“Functional Medicine aims at finding the root cause of any health issue. Often that will mean that we treat you from the inside out, but it can also mean that we treat you from the outside in.
We also take into account every aspect of who you are when deciding a plan – your goals, ambitions, ancestry, nutrition, vocation, resources, mental health, lifestyle – we will take it all into account with soul-centered care focused on bringing your body into alignment with your mind, spirit, and soul.”
No high pressure sales necessary. We knew we had found the right place. We never even asked about cost. They mapped out their recommendations for the next three weeks including:
EBOO dialysis - needles in both arms
High dose vitamin C
Ozone therapy
Raw Vegan diet - 90 days (Yikes!)
Juicing
And a whole lot more…
During the conversation Mary Anne said something like, “Dave you have a very serious diagnosis. Don’t be afraid to put yourself first. Don’t be afraid to use your diagnosis to draw a boundary. You must take care of yourself” I said, “Do you mean, like, I can play the “cancer card?” She chuckled and said, “yes, absolutely.”
On the way home something stirred inside me. (maybe something a little sinister) “Take care of myself…put myself first…play the cancer card. I like this!” All of a sudden I thought of Jim Carrey in Bruce Almighty when God gave him divine power and the song, “I Got the Power” breaks out.
I now have the ultimate trump card. Imagine…
“I’m sorry for speeding, officer, but I have 4th stage cancer and I’m driving home to hold my wife and be sad.” Boom! Cancer card. (hitherto known as the C card).
Late on my quarterly taxes! Where’s my C card?
Get mad, throw things. Got my C card!
Too many changes from a client. Reaching for my card.
Leave dishes in the sink. No problem, plenty of C cards handy.
I can shout to the world, “I’ve got a C card and I’m not afraid to use it!”
Heady!
Well, as my mind cleared (as they say, “absolute power corrupts absolutely”), it was a marked moment for me. I’m not sure I’ve ever been in a position where I felt full permission to be the person in need. I’ve been pretty good at the giver role in my life, especially at Christmas time, but not so much at being on the receiving end. Asking for help and that being ok? Taking time to care for myself so I make sure I am around for as long as possible to love and be loved here on planet earth? I suppose that’s legit.
I was conveying this story over tea (green tea is a big gun C fighter) with my friends Gordon and Megan. As I finally paused (with the C card I can guiltlessly dominate any conversation, LOL), Gordon said succinctly, “It sounds like you're actually playing the human card.”
The H Card. Hmmmm.
It hit me, “Yes, Gordon, you're exactly right!” Perhaps none of us are very good at playing that card. Gordon, Megan and I further discussed the fact that, if we aren’t taking good care of ourselves, we will never be able to care for others.
What does it mean to be human and to embrace your frail humanity? To be OK with being broken. To give yourself the grace you give others. To not meet or exceed expectations of yourself. To embrace that in most holiday seasons it is more blessed to give than receive, but maybe not this year. To confess you need help. (I know I need help, like never before). Kathi and I have already been blessed beyond measure by the generosity of people to the point we just hold each other and weep.
The medical path we’ve chosen is very expensive and isn’t covered by insurance. For weeks we wrestled with whether or not to go. But after much prayer, research, counsel and nail biting, we decided on a clinic in Mexico called Hope For Cancer. We leave Jan 1st for three weeks.
I Love You…
Expressions of love fill the air as the warmth of the Christmas season brings out the best in us all. Our inner Scrooge softens.
As if I had been recently visited by Scrooge’s three ghosts, I’m looking at literally everything with new eyes, new ears and a tenderized heart. I cry on most days. Not necessarily from sadness, but rather from an over-full emotional reservoir. Lately, I’m dipping more deeply into the well of my life than I have been used to. Even the simplest expression of love prompts a few tears. The experiences of these last weeks have somehow set my emotions adrift, and they are finding unpredictable places to moor.
Kathi notices this with an appreciative, “How sweet.” My grandson asks, “Pop Pop, why are you crying?” On a recent business call… yeah, that was a bit awkward.
From this deep well of emotion I’ve drawn up a desire to express love with more attention and intention—both in my speaking and in my writing.
“Love you.” “Love you sister.” “Love you brother.” “We both love and appreciate you!” “With love.” “Love ya’ man.” “You're the best, love you.” “Love you much.” “With love and appreciation.” How easily these expressions roll off the tongue or close out an email or sign a birthday card. But, is each phrase more a cultural idiom than a deeply meaningful declaration?
Thoughtful “I love yous,” for my wife, especially, and for my kids, grandkids and extended family, have always been easy for me to express. So I thought I would step up my game a bit and say/write the more direct “I love you” to more of you. The more the merrier, right?
To my surprise, putting this resolution into practice has created some mixed emotions, some thoughtful hesitation on my part. Placing the “I” in front of “love you” makes it sound much more personal. Intimate. Deeper. As I widen the circle a bit, could my words possibly be misunderstood? Unwanted? Plus, I’ve had to face my own interrogation; do I really love them? Do I show it? Why am I hesitating? What definition of love do I bring to each recipient of these words? Lots of questions.
This experiment has prompted me to take another look at love. Maybe put a finer point on how I define it.
First kiss? Last goodbye? Baby’s breath? Friendship? Puppies? Coffee? What is it? When I try to pin it down, I find that love defies definition.
Love can feel like a hot potato. True love hurts. It torments. It tantalizes. Love takes us to the depths of human experience where infinite joy and deep sorrow are constant companions. We can feel such a love for another that our heart literally hurts in their absence. People have died from a broken heart.
To love is to risk it all. A declaration of love opens the door to possible rejection, to unrequited love. Friends, children, lovers who move on without us. Love can leave us in an ocean of tears.
Still, if there was no lost love, I supposed there would be no shared love. Poetry and song can take us on a journey into love's shadow or reveal love’s light in the darkest of nights.
Jesus said that all the law and the prophets are wrapped up in this one thing. Love. Love is truth. During this season in my life, I feel Truth is leading me closer to this thing called love. To search its depths. To squeeze the juice of life from it. To say it. Mean it. Express it. Take risks with it.
As 2023 dawns this January, maybe you’ll join me peering deep into life’s well to ponder the question asked by the Bee Gees back in the 70’s; “How deep is your love?”
Happy New Year.