Passive-Aggressive

When I got my diagnosis, I felt like I was in that scene from Mel Brooks’s High Anxiety where he’s falling, spinning, screaming. Meanwhile, back in the sterile room, I was speechless, listening to the two hematologists from the Huntsman Cancer Institute explain to me the pathologist’s report and insisting I drop everything and get admitted into the VA Hospital right away. My life was about to start spinning out of control – specifically, my control – for quite some time. And the kicker was, no one really knows how long that period of time is.

“What would you do if this were your son,” my mom asked. The doctor said without any inflection, “Admit him and treat aggressively with chemotherapy immediately.”

Did he really say immediately? Why, yes he did. He repeated the pathologist’s finding that 50% of my bone marrow had some nastiness, something called monoblasts or promonocytes that shouldn’t be there. They should be maturing into full-fledged blood cells, but for some reason, they’re not. And that reason, crime-stoppers, is acute myeloid leukemia and he pretty much laid out the stunningly good news that if I did nothing, I’d be pushin’ up daisies in about 90 days. Be sure to invite this guy to your next party!

That night, I began the odyssey. I remember closing my eyes in the claustrophobic confines of the MRI tube mulling over the new reality that something inside of me that I couldn’t feel, see, taste, hear, or smell was trying to kill me. No sci-fi monster waiting to jump out of my chest, no parasite from an exotic destination vacation, no comeuppance from a life of self-abuse, just an anti-climactic lab report with some really bad numbers. Throughout that hour of solitary confinement, broken up by unpleasantly loud clicks, bangs, and weird noises, I realized that I didn’t even know the questions to ask. The only thing that went through my mind was, “What’s going to happen to me next?” Maybe that was a good thing as I broke the news to my immediate family because I didn't know the answers to the questions they had and I wouldn't have to prolong this awkward and quite frankly very disturbing conversation punctuated by gasps and pregnant pauses. In reality, what came next essentially was getting smart about what this leukemia thing is and what I can do (and not from the Internet which takes you from a commonplace symptom to death in about three easy clicks!). 

During my first week in the hospital, one of the hematologists came in and asked, “How are you doing today?” Trying to be friendy, I jokingly tossed back, “Well, I don’t know, you tell me!” The discussion that followed really drove the point home that he wanted my input, my involvement. He wanted to know the details from my vantage. It was in that moment, I realized that more than my positive attitude, I needed to really be engaged with my own treatment, not just cognizant of what was happening. Paying attention to what the doctors were prescribing, what the nurses were doing procedurally, and how my body was responding and feeling all became vital to my healing process.

I’ve stopped things from happening that weren’t OK, refused unnecessary medication, or prevented additional procedures that caused extra unpleasantries from being inflicted just by paying attention and asking questions. No doctor or nurse has yet to be offended. From what I’ve seen, they’ve used them as teaching points for me and it reinforces that I’m in good hands.  If they don’t know the answer, they’ve stopped what they’re doing and gotten the answer from someone else, but in the end, I’m still being taken care of very well. The bottom line is you know your body and what ‘normal’ should feel like. When you’re under the care of a medical professional, it’s important to communicate in a way that you both understand what’s happening and the nature of the discomfort or feeling you have that’s not quite right.  Here are some examples of things I brought up.



• My blood sugar showed an alarmingly high reading (>500) when it was normal every other day. I noted that during my first round of chemo, I was given a constant drip of something called D5-half (the “D” stands for dextrose, a form of sugar). This was given at the same time as the chemo drug. While an inpatient, I had my blood drawn every morning for something called CBC (where the types of cells are quantified, essentially) and chemistry. The blood is drawn through my PICC line – the same line where I get the IV and chemo.  If those other drips aren’t stopped, guess what gets mixed with the blood? A couple of days’ lab tests were skewed as a result and I had my fingers unnecessarily pricked on the hour to test my blood sugar, all readings being normal. My questioning the procedure stopped the finger pricking.
• I was beginning a session of chemo one morning and when the nurse flushed my PICC line, I could hear it in my ears, which was very odd. When the pump started, I could feel it in my chest, something in the many IV pushes I had never happen, so I stopped things right there. It wasn't uncomfortable, but it wasn't right. A quick trip to X-Ray showed the PICC line had diverted away from my heart and into my jugular vein.
• After three rounds of chemo, my body is pretty consistent in the way it responds. For example, at about day 10, my neutrophil count starts to plummet and by day 12, I’m in a neutropenic condition, meaning my immune system is pretty compromised and I have to take certain precautions. During my first round of chemo, I asked for prophylactic drugs to keep me from coming back through the Emergency Room. The hem/onc fellow at the time called me every day following my lab tests to let me know what my counts were and when to start taking the antibiotics / anti-virals. It worked great; the second round, not so much. I didn’t get the calls from the hem/onc that had rotated in and I ended up with a neutropenic fever that got me admitted for a lovely 4 days. Lesson learned: just take the meds when you know the numbers will tank. The new hem/onc fellow who rotated in agreed with me…and I’m doing very well even though as of yesterday my neutrophil count was a big goose-egg! No fever, feeling great!





This was right after the nurse had
exerted some serious pressure on
the hand.  You can see the beginnings
of what looks like a bruise.

• 

  

  Thankfully, it doesn't hurt as the
  nurse said it would. Just a little
  discoloration.

  This Monday, I asked to get a blood type and screen because on day 14 of the chemo cycle my platelet count falls to the floor and without sufficient platelets, you have this nasty tendency to bleed. My request was politely declined and as I was driving home, I got a call from the physician’s assistant I’ve been working with to come back for a – yes, you guessed it – blood type and screen because I’m critically low on platelets (4k/μL – normal is 150k-450k/μL). So, as instructed, I went to the lab to get it drawn. The lab folks are pretty damned good at what they do and have a way of keeping the needles from hurting.  I don’t know how they do it, but they do! The first stick didn’t work. My vein collapsed around the needle apparently. The second stick went in my left hand and he was able to get the sample. On my way home, I felt an itch in that hand and looked down and saw the top of my hand where the sample was drawn swollen about the size of a golf ball. It was really quite amazing. So, at the very place I had taken a U-turn to go back the first time, I made yet another U-turn and went back to the ward and asked, “Is this serious or will it go down by itself?” The nurse’s gasp said it all.  She escorted me to a chair rather quickly and put all her weight on the hand to stop the bleeding. I won’t say, “I told you so, but…” Here are some before and after pictures. I had the presence of mind to come back to the hospital, but I didn’t get a chance to take a picture of the swollen hand.

My point in these examples is not to accuse anyone. We all make mistakes and none of these are really serious even though it did cause me some discomfort and inconvenience. It just drives the point home that regardless of how small the procedure, no matter how trivial the detail, I have to pay attention and if I don’t understand something, I should ask.  I have to manage my care because it’s my body and it’s my life; and I’m responsible for it and I have others available if I'm not coherent to do the same for me. I trust the doctors and nurses to do their job of course, but I have to work with them to fully bring about my healing.

Note that I use the word healing rather than treatment. That’s because I see this whole adventure as more than something happening to me.  It’s beyond restoration to a previous state.  We’ll get there, of course, but the medical aspect of cancer treatment is only part of the big picture. And that’s where my involvement, as the patient, is critical.

You see, this isn’t happening to me although technically that is the case.  Something this big is transformational and it requires participation, my participation. I can’t be passive, but with the same urgency that the doctor who sat across from me insisting I be admitted that night, I have to be aggressive in my own healing.

Be well, stay strong, and much love to you all.

Today’s music – Fix You by Coldplay

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you

Always Look on the Bright Side of Life

I have been pretty vocal about my role in my own healing process. The more I experience and the more I read of other’s experiences, I become progressively more convinced that this is true. I don’t think it’s rocket science to grasp that some stress is good to get us to move outside of our comfort zones and toward something positive; too much stress, of course, produces some definite negative consequences. In my case, I got high blood pressure, acid reflux, and I was just plain unhappy. I’m beginning to wonder that as a result of the years I was in such an unhappy place, the leukemia I’m experiencing now was my body’s ultimate rebellion or outright surrender. There is certainly some conjecture about that, of course, but again, I can't help but wonder.  I came across this as I was reading this morning:

Increasingly, in the medical press, articles are being published about the high cost of the negative emotions.  Cancer, in particular, has been connected to intensive states of grief or anger or fear. It makes little sense to suppose that emotions exact only penalties and confer no benefits … creativity, the will to live, hope, faith, and love have biochemical significance and contribute strongly to healing and to well-being.  The positive emotions are life-giving experiences.
          - Norman Cousins, Anatomy of an Illness

Since moving home to Utah, working at a job I really enjoy and where I am appreciated, being around family, living in a place where I’m more acclimated, I’ve found myself much happier and aside from the obvious, healthier.  I haven’t required high blood pressure medication and haven’t experienced the chronic acid reflux that has plagued me for many years. My response to the chemotherapy has been  very good and from everything I’ve been told, my prognosis is also optimistic. In short, I have a positive outlook and I have much to be grateful for, things I’ve also been pretty vocal about. But it does bear repeating.

And it bears repeating for all of us, seriously. While there are some who look forward to another incarnation and others who hope in an afterlife, the fact of the matter is that this life we’re living here and now is the only one we can truly be certain. No one, to the best of my knowledge, has come back with a slide show of the hereafter! The point being is simply that living a life, a full life, now is not just a part of the fabled “American Dream,” but rather something we need to pursue. It’s part of our physical as well as mental health. It's even constitutional!

Being around people that build you up rather than sucking the life out of you, finding the vocation that fulfills you rather than bleeding your soul, and participating in activities that make you feel complete are things that are imperative, not just things we should tick off on a bucket list. They have to be part of our daily lives. True, we all have circumstances that may prevent us from making immediate changes, but if you’ve surrendered to an existence of habit and becoming comfortably numb on the weekends to deaden the dread of the workaday week, what kind of life is that? I’ve written before that “normal” should never be the goal, but rather you have to redefine normal to be exciting and revitalizing. You can do that, right? And again, don’t wait until you’re lying flat on your back and unable to make the changes in your life necessary to be happy. Do it today!

A good friend of mine owns a number of day spas in the TwinCities. Her attitude toward business has made her not only a successful businesswoman, it has made her an absolute delight to be around.  Suffice it to say, the attitude and success are inextricably entwined.  Her corporatecreed is, “…knowing that right thoughts and right efforts ultimately bringabout the right results.” It’s that kind of attitude I have adopted personally and if I’m ever even a fraction as successful as she is, I’ll be very well off.

But her success isn’t surprising at all considering her corporate credo and neither is the accelerated healing because of a personal attitude that mirrors that positive outlook. It’s the kind of thinking that any of us can adopt for any reason for any occasion in spite of any negative circumstance. Sure, there’s reality and I’m not some Pollyanna and I have no desire to be a martyr, but neither will I be a prisoner to negativity…and I hope you won’t either.

I had a good conversation with a guy named Dennis today. At the suggestion of the hospital social worker, he stopped by during my first round of chemo to fill me in on some of his experiences when he was in Seattle for his bone marrow transplant a few years back. He stopped in for purely social reasons today and it was good to see that he’s doing well and thriving and maintaining that edge of attitude that keeps us both smiling. Even though he's in his 60s, he typically wears a t-shirt that brings a grin.  It gives me all the more hope that not only will I be OK, I will thrive when I’m through my treatment. I recognize, too, that the road ahead of me is not going to be an easy one. In fact, it’ll be damned hard and involve a lot of discomfort and sickness, the likes of which I’ve never seen and wouldn’t wish on anyone, but it’s a road I can walk and complete. It’s also one that I will be able to help someone else down at some point, someone who will need a bit of help to take the next step.

As always, I thank you all for helping me take the next step and be positive throughout this rather long and tedious journey. As the button my friends and high school classmates, Jeff & Jane gave me on my table in front of me says, “No one fights alone.” I believe that!

Now, for something completely different. Fair warning, if you’re at all sensitive to religious sensibilities, you may not want to click on the video.  Monty Python’s Life of Brian is a parody and not for everyone. I don’t want to offend, but the words to the song, Always Look on the Bright Side of Life are what I’m smiling at today. I’m a die-hard Python fan…so with that disclaimer, I offer my deepest admiration and genuine gratitude to all of you who walk along with me...and if you enjoy Monty Python, sing it with me!

Be well, stay strong, and of course, much love to you all! J

Golden Scars

At a low point in my life, someone very dear to me shared a little quip that, under the wrong circumstances, might be misconstrued as glib or insensitive. Yet the words were true because they carried the import of experience. She told me something to the effect that “Scars are beautiful because they prove that you heal.” Lately, those scars have a twinge to them much the same way people who have broken bones will tell you that certain weather will induce aching in the same areas as the break. I think the aching I feel is because I missed the mark again. It’s not like I missed the lesson from the first blunder…I got closer to getting it right, but I ended up hurting someone else in the process, something that heaps hurt upon hurt.

I find it ironic and infuriating that these circumstances make me want to be surrounded by people and at the same time left alone. Having been a tad under the weather as of late, the scales tipped in solitude’s direction. So I’ve had a lot of time to myself to ruminate in my own self-imposed ‘time-out.’ In my quiet times, thoughts either tend to spin out of control until they implode on themselves or they resolve into a core idea that has been chugging in the back of my brain for a long time. During these times of clarity, I get physically weary, emotionally fragile, and just plain spent. Suffice it to say, it doesn’t take much for a movie, a song, or nothing in particular to bring that familiar lump to my throat and I’m again finding myself wanting to be simultaneously with people to lean on and alone to ‘get it out of my system.’ Yet, the real thing that that pushed through lately is that it’s not that I want to be around people, but that I want to be around people who have a scar or two.

You know you’ve been around someone with scars because they come off as wise beyond their years; they impress you as authentic, and their encouragement doesn’t have a pitch at the end. Their time with you is truly selfless. Their smiles seem to communicate more than their words, yet they don’t let you simply vent without some sort of accountability attached—you can kvetch all you want, but be prepared to do something about it! These are the people I truly treasure.  Admittedly, as much as I wouldn’t complain about having a chiseled physique, a wrinkle-free face with gleaming white, straight teeth, and all the high-dollar toys, the people who typically have those things aren’t the ones who make me feel whole. The kind of person with scars doesn’t tell you what to do, how to do it, or heap guilt upon you for not doing it, but rather is there for you when you make the same mistake over and again, when you feel like you’ve fallen for the last time and don’t have the strength to stand back up, let alone, sit…but their enigmatic smile is there and they have a hand outstretched when you are able to finally muster enough strength to roll over and get your face out of the cold, fetid mud. The real kicker is that someone with one of these scars will probably not call attention to it; they may not admit to having one. And they’re the ones that lift you to their shoulders to publicly cheer you when you get it right.

No, the people who have the innate ability to put me back together are typically those who have been folded, spindled, and mutilated a time or two and rather than having let circumstances beat them into some pink slime, they have been refined into something beautiful yet malleable; and inexplicably, they find a way to become part of you. The best way to explain that kind of selflessness is in the Japanese art of Kintsugi—using gold to fill in the cracks in a piece of pottery and thus restoring the piece. The piece isn’t without blemish of course, but the original break now becomes beautiful. Its scar has, indeed become a beautiful thing, and has in effect made the original piece worth much more. I find that to be the case in my own life and in those who have survived emotional and physical ordeals.  After all, the old proverb, “Smooth seas do not skillful sailors make,” didn’t come about without a few storms or shipwrecks.

These people are all around us and they don’t typically stand out, but their examples do. Their courage isn’t the kind of thing that makes Hollywood movies, but rather the scorn of the self-righteous. They are the recovering alcoholics; they are the young women, caught in flagrante delicto, overcome shame and raise the child with great grace and dignity; they are the awkward gay kids who push past the bullies and get their degrees and decent jobs, even after being kicked out of their fundamentalist parents’ home; and they’re the people like you and me, who just made a wrong decision that had long-term consequences or even just happened to be in the wrong place at the wrong time and performed the great alchemy of turning sour grapes into vintage wine!

 

Healing is a miracle, and never more so than when you feel like you’re going it alone. But the great gift of healing is a beautiful mark left behind to remind everyone that you have become the miracle and now the agent for healing in someone else. That empathy born from your own pain is a powerful thing, but even more so is the wisdom of knowing what to do with it and when to let it rise up within you. It’s risky, it’s sometimes painful, and it’s often awkward, yet to the one who is broken, you are to them priceless, immeasurably beautiful, and permanently part of their beautiful scar…you are golden and restore someone to wholeness.

 

I encourage you to reflect back to the golden people in your own life and let them know how you are whole because of their gift to you.