The Other Side

Now that I’ve passed the ten-year mark for ending up on the right side of the dirt in spite of a terminal cancer diagnosis, it’s easier to see the positive things that came out of it – especially since the “terminal” part of my diagnosis turned out to be mistaken.  Still, the cancer part was real enough and I went through the experience being treated as a goner, based on my doctors’ prognoses.  S**t, as they say, got real – and it got real right quick.

 

As it happens, I get complimented on being real and I take a bit of pride in that because I didn’t always get a lot of reinforcement for being myself when I was young.  It appears, however, that I simply can’t help it.  And, happily, getting real when you’re facing cancer – and death – may be the single best ability you can have.  Another thing I had going for me is a trust in the wisdom of life, in spite of having maintained the outrageously contradictory smoking addiction to which I had succumbed in my youth.  I had to get real about my responsibility to my own health, illnesses and – finally – my own death. While I was going through it, though, there were a lot of things I know now that I wish I’d known in the beginning.  With hope that these things will be helpful to someone in the middle of a cancer diagnosis and treatment, here are:

 

The Top Ten Things I Learned About Being a Cancer Patient

 

  1. You need to partner with someone to deal with cancer because one set of ears isn’t enough to hear everything the doctors are telling you. Call Gilda’s House or another advocacy support organization if you need to.  Then, learn all you can to educate yourself and your advocate on how to look out for you every minute before surgery and every minute after surgery until you’re out of the hospital.
  2. Some doctors will respect your right and ability to learn as much as you can about your cancer and its treatment and communicate with you accordingly.  Some will be astoundingly oblivious to you as a thinking, feeling person.  If they have the expertise you need, just remember that their considerable expertise may be the very thing that blunts their emotional intelligence.1
  3. It will break your heart to hear this – but you can’t rely on all doctors to put your best interests before theirs.  Some of them will provide outdated, unnecessary, or incorrect treatment because it’s what will profit – or be easy for – them, not you.2
  4. This is putting it too bluntly, but people want to be able to find a reason to blame your cancer on you, your actions, your environment, or your genes – because it makes them feel safer.  If you’re a smoker, you’ve made it real easy to do.  But, remember that true compassion doesn’t judge.3   
  5. If you’re a smoker, some people (even doctors) will rub it in, not realizing that we smokers with cancer are excruciatingly aware it’s our own fault.  Still, it’s never too late to quit smoking and, if you do, you stand a better chance of living – or a better chance of dying with dignity.  And it’s going to go one way or the other.
  6. The Internet is a blessing beyond price in educating yourself and connecting with others who have experience with your cancer.  If you’re as fortunate as I was, you will find that it’s possible to deeply love people you’ve never even met.
  7. Some people will think they know what’s best for you and will insist on doing things that are unwelcome or even downright stressful. Be grateful for their intention but trust your heart.  If it’s not something you want – and it really matters to you – now is the time to claim your power.  Seriously, if not now, when?
  8. When people start to call you after your diagnosis, accept sincerely caring and supportive calls from those who love you as the blessings that they are.  And, do your best to be polite to callers who speak to you in hushed, mournful tones as if you’re already laid out at the mortuary, and get off the phone as quickly as possible.  They’ve done their duty at that point and probably won’t be calling back.
  9. People will tell you that having a positive attitude or sufficient faith are the main keys to surviving cancer.  There’s no doubt both are important but, think about it.  If that were all there is to it, there would be a whole lot more dead mean, faithless people.
  10. Prepare to be surprised at what you can get real about once you finally have to. You’ll be surprised by who brings you comfort.  You’ll be surprised by how much you can learn about your cancer and current treatment options in a short time – perhaps more than some of your doctors.  You’ll be surprised by how much love and compassion people can have.  You may be surprised at how much passing through your dwindling days can distill gratitude for your life into its very essence.

 

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Footnotes:

 

1.  OMG – there were so many examples of doctors’ insensitivity that, as stunning as they were at the time, finally became funny (and, perhaps, what I perceived as stunning insensitivity on their part was actually their version of getting real).  The first doc told me how hopelessly agonizing my death from cancer, in 6-18 months, was going to be and then told me to get a flu shot.  Yeah, like dying from the flu didn’t sound like a far better option at that point.  Another doc (head of the university oncology department) immediately told me I had not just the one metastasis (which turned out, after surgery, to have been benign) in my lungs but five (reducing my five-year-survival chances from 20% to 0%).  That doc then sent me on my way to the next doc for a bone scan to see if they could find more mets.  And then, that doc told me, yes, they’d found metastatic cancer in my rib cage (which turned out to have been a false positive).  At this point, I finally broke down and cried (but, I’m proud to say, only a little) at which point he asked, “What’s the matter?”  Like, godamighty, man – did you not hear what you just said?  I sure did.  And, finally, adding outrageous paternalism to the mix, the laparoscopic surgeon who told me during his consult not to worry my pretty little head about the surgery; he’d have me back on the beach in a bikini in no time.  Like I was EVER a candidate for sporting a bikini or that being bikini-worthy was my motivation in pursuing non-disfiguring surgery that wouldn’t leave me with a bulge on my side that I would brush with my arm with every step I took for the rest of my life (however short it might be).  I know all of that sounds like I’m just carping but my point is this:  get real clear that some of what docs “know” may be a very well educated guess – but it’s still just a guess.  

 

2.  There were many examples of doctors putting their interests above mine.  First, the internist who first diagnosed me with terminal kidney cancer referred me to an oncologist, from whose practice I later surmised, he benefitted financially (and I suspect this is common).  The oncologist, in turn, referred me to a urologic surgeon to whom, as I later discovered, he was related by marriage.  The urologic surgeon provided the best evidence that not one of them was – foremost – looking out for my best interest.  Since I was facing kidney removal as part of my treatment, I had read all about nephrectomy before my visit with the urologic surgeon.  Let’s just say that the traditional procedure for kidney removal severs tissue, from the navel all the way around to the spine, in a way that can be most succinctly described as “the magician’s accident” that might occur just after he says, “Watch me saw this lady in half.”  However, a newer and far less invasive method, laparoscopic nephrectomy, had been in use for several years and was available in the area.  When I asked this particular surgeon about having this kind of surgery, he said, “Why should I have to work through keyholes?”  Clearly, not to spare me from ending up with a permanently protruding bulge that results from traditional nephrectomy.  God forbid he would have to inconvenience himself by staying current in his field and learning to perform procedures in a way that produce far less disfigurement.  Again, I’m not trying to complain but rather explain how real I had to get when thinking about recommendations based on how much it would profit the people making them. 

 

3.  Yes, smokers are second-class cancer patients.  Have you ever seen a fundraising event being held for a lung cancer patient that doesn’t include the phrase, “non-smoker?”  I never have –and can’t image a jar in the minute mart with a sign that that says “Lifelong smoker with cancer needs your help – please donate.”  In fact, if you ever see a fundraiser for someone with lung cancer, it will emphasize that the person is a non-smoker.  It’s hard for people who’ve never been personally touched by a tendency toward addiction or compulsion to understand that not everyone can overcome their tendency toward addiction.  Please pray that you will be able to have strength and compassion – for yourself or for others – to give or to receive, as needed.

 

It is my prayer that anyone reading this who is experiencing a cancer diagnosis also discovers deep reservoirs of strength filled with the help of old friends, special family, compassionate doctors, attentive nurses, and the people you find through the Internet, going through what you’re going through, who become best friends you’ve never met. 

 

 

 

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The Prequel to the “Last” Christmas

I’ll start with the punch line:  The doctors were wrong and I’m still alive.

But, they could easily have been right and the terminal diagnosis they gave me finally made me walk the walk of the philosophy that I had embraced in every major aspect of my life but one:  Off and on (but mostly on) ever since I was fifteen, I had smoked.  I could not possibly have done anything more antithetical to the way I lived and approached most of the rest of my life.  Well, except for food but that’s another sad tale, though it does play a part in this one.

So, there I was, minding my own business, trying to see a new doctor about some middle aged menstrual hijinks I was dealing with, when the doc ordered a chest x-ray because I was smoker.  Let’s call that x- ray the first domino in the cascade of medical encounters I was about to experience.  It came back showing a suspicious lung nodule.  The subsequent CT of the suspicious lung nodule came back showing a suspicious kidney mass consistent with renal cell carcinoma.  Put the two together, the kidney mass and the lung tumor now consistent with metastatic disease, and they equal a cancer that is considered incurable.

I was told that I had six to eighteen months to live.

So, I went for a walk.  Fortunately, I had recently begun a campaign to improve my lifestyle habits mainly because smaller fat women were starting to orbit me.  Walking and healthy eating had become my weapons for improving my life.  I knew smoking and overweight were interferences that had prevented me from remaining healthy.  The irony is, even as my new doc was telling me that I had incurable cancer, he was also telling me how healthy I was because my blood work looked fabulous, I had low/normal blood pressure and was completely symptom-free.  How mind bogglingly insane is that?

My understanding of health – an understanding we at Life University call vital health* – was already serving me well because, as a fat smoker with cancer, I understood the fact that I was unhealthy as hell.  On the other hand, the doc’s way of thinking allowed him to tell me I was a dead duck in one breath and how healthy I was in the next.  It was clear to me that, in my doctor’s mind, all my “health” would do for me would be to extend the inevitable for a few months – I had no chance to survive.  At that point, there was little chance for survival in my own mind.  I did know that if I had any chance at all to survive, I would have to remove the outrageous interference from cigarettes.  My understanding of vital health told me that life could find a way but I surely had given death a head start.

Smoking had interfered with the expression of health in my life and now I was determined not to let it interfere with the expression of health in my death.  Vitalism had always told me that death is a natural part of life and has its own wisdom, just as life does.  In order to die a healthy death, I would not be one of those people who pull poison from a cigarette with her dying breath.  I would walk and be as active as my performance status allowed.  I would give my dying body the best foods in their most unprocessed state.  If doing all that allowed me to survive, it would be a gift.  But, I was more motivated by the desire to not interfere with the natural process of dying.  If my body’s life was designed to express health without interference, I trusted that death was designed the same way.

So, facing a terminal cancer diagnosis, I stopped smoking.  I’m told now by many ex-smokers that a terminal disease would be like a ticket to smoke again.  I’m told by current smokers that there is no way they could stop smoking under that kind of stress.  For me, the possibility of dying a healthy death finally congealed the vital health truth I’d always known but had been unable to live.

As a spectacularly slow learner, I salute each and every one of you who are able to live your lives free from self inflicted interference with your innately engendered health.   And to those of you who have come to your health through the side door, welcome.

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*Vital health” is a model of health care that includes modern vitalism or neo-vitalism, which Life University defines as the “…recognition that the universe itself is self-conscious and, as such, continually creates itself as a dynamic system wherein living organisms are self-developing, self-maintaining and self-healing.”

Post Script to the Prequel:  After several weeks, from Thanksgiving to the end of January, I underwent a multitude of doctor visits, tests, scans, consultations, culminating in surgery on February 5.  I had simultaneous thoracotomy (removing a lung tumor) and nephrectomy (removing the cancerous kidney).  Pathology showed that the lung tumor was benign, meaning my kidney cancer was not Stage 4 Renal Cell Carcinoma that had spread to my lung, as the doctors had thought.  It was actually Stage 1b and thankfully still confined to the kidney.  I am starting on my eleventh year in remission – still trying to learn how to be so grateful for my life that I can be grateful for all its lessons, even death.

Post Post Script to the Prequel:  How is this about the Happy LIFE and the year of living positively?  Well, for one thing, after this experience, you’d think I’d be the most grateful person on the planet, wouldn’t you?  And, I believe that I was indeed thankful to God and every person who graced my life during that time.  Ten years later, a simple little program of “happy habits” has made it clear that gratitude cannot only be something that we feel; it must be something that we do.  One of the simplest actions of gratitude is to count our blessings and, by committing to writing down three of them each day, I learned how much richer my life could be.  And, just so you know, I count each person who reads this far as a blessing.  Thank you.

(Note:  This post, aside from the countless postscripts and notes, was adapted – only a little – from one of the “Vitalism Signs” columns I had the great privilege of writing for Today’s Chiropractic Lifestyles, a publication of Life University.)

My Last Christmas

As some of you may know, this holiday season has been a real milestone for me because this is the tenth anniversary of “My Last Christmas,” as in my final Christmas on earth.  Ten years ago, the week before Thanksgiving, on the day before my 45th birthday, I was told that I would not likely live to see another Christmas because I had terminal kidney cancer.  I spent the entire holiday season – and beyond – in doctors’ offices and hospitals, reading medical journals, finding hope, then losing hope after having tests that always seemed to bring worse and worse news.

Now, at this point, let me say, I can hear you thinking.  And what I hear is:  “Well, this is certainly uplifting.  What’s THIS got to do with the Happy LIFE?”  Well, please bear with me just a bit longer because here’s what I hope:  that thinking about what kind of Christmas you’d have if you knew it was going to be your last one, might help make this the best Christmas of your life.

Here are the top ten things I learned from my “last” Christmas:

1)   When you don’t know what else to do, go for a walk.  Or, take a bath.  Depending on how cold it is outside.  And don’t confuse the two because good walking shoes are not waterproof – and the neighbors won’t appreciate seeing you naked

2)   It’s OK to pray for healing but you’d better pray for strength and acceptance, too.  And the simplest act – from cleaning the kitchen to walking around the block – can become a prayer of gratitude for each moment that you have

3)   No matter how hard it is to wait for the right time, and no matter how far away they are, deliver bad news to the people who love you in person

4)   The people you’ve always laughed with before, may – or may not – be good at finding the humor in dying.  And the people you least expect may end up being the most comfort

5)   As hard as it is, dying is a lot harder on your family than it is on you – and they will become a whole lot closer to one another over the prospect of losing you

6)   A final family portrait is a good idea – and giving each other rabbit ears in a photo booth is the best portrait of all

7)   When it comes to spending your time, “who” is far more important than “how”

8)   Happiness really is a choice – and we can make a different choice every second of every day

9)   Christmas is about what’s in your heart, not what’s under the tree

And the biggest thing I learned from being told – ten Christmases ago – that I’d never live to see another Christmas:

10)  Don’t believe every freaking thing you hear.

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Note:  This post is adapted, just a little bit, from the remarks I was asked to give as “Holiday Sunshine” at a local Kiwanis Club (of which I am honored to be a member).  This is something I’ve been thinking about since I realized, around the time of my birthday this year, that it was the tenth anniversary of my “Last” Christmas.  Since this is also the year of “The Happy LIFE” project, it occurred to me that the Happy LIFE isn’t always sunshine and lollipops, either – so this is what came out when I sat down to write my Holiday Sunshine remarks.  And, in the interest of full disclosure and painting the fuller picture of the things I learned during that time, I’ll add this:  according to our daughter, one of the things I learned is how NOT to be such a [jackass] about putting up a Christmas tree.   I’m not fully cured of that one yet, though. 

Duckling

What does it take to make us grateful? 

I heard today about a group that puts on what might accurately be called “Homeless Camp” for kids to experience what homelessness is like.  The kids are outfitted, just like homeless people would be, in donated (usually secondhand) clothes and footwear, given a blanket and 80 cents a day, and they sleep in a public park.  They eat in soup kitchens, which may or may not also provide limited restroom facilities.  These 14-16-year-old kids, of course, do have “camp counselors” looking out for them but, essentially, they are living as homeless people do.  Talk about your experiential compassion learning!  And, not surprisingly, the kids report being a lot more grateful for what they have in life after completing the experience.  I guess you could say it’s a gratitude immersion experience.  I’ve had one of those myself that made lasting impressions on me – both positive and negative.  I’d like to share a bit about how the Happy LIFE helped me flourish today, as I continue to navigate the aftermath of my own immersion experience.

In my case, nearly ten years ago, a terminal cancer diagnosis and surgery – followed within four months by another major surgery – created a major immersion experience in my life.  If there’s anything that anyone out there who has had a medium-to-major medical condition knows, it’s this: from the time of discovery to the end of treatment, treatment becomes your whole life.  It’s all you do – doctors, tests, scans, procedures, examinations, preparations, follow-ups – and eventually, treatment for the condition just takes over and becomes the sum total of your existence. 

I can’t adequately express my awareness of – or my gratitude for – how fortunate I was that my cancer was not as advanced as it was initially believed.  I’m also thankful to have greatly benefitted from (then) state-of-the-art procedures performed by highly skilled surgeons.  Still, the whole experience left me feeling marginalized, patronized, utilized and, yes, sanitized on more than one occasion.  There was precious little humanity in it.  Dignity was in short supply in the medical marketplace, too.

Except for one shining beacon:  Dr. Johanna Whalen.  I have used her real name so as not to protect her from my appreciation.  I am still likely to cry at the very thought of how much she meant to me, in treating me like a person who had feelings.  Moreover, she treated me like a person who was capable of asking intelligent questions and educating herself enough to form valid opinions about treatment options.

Flash through the intervening nine-plus years to the present and you find a woman who had yet to discover another doctor who actually seems to like people or, perhaps even more challenging, to like me, especially as someone whose opinions are based in vitalistic (or, more accurately, a “neo-vitalistic”) philosophy.*  Let’s just say that I’ve been like a little lost duckling who imprinted on Dr. Whalen and who has been looking and looking for another one just like her.

Today, I am feeling very grateful – like a little duckling – to have finally found a doctor who likes people and who, to all appearances, likes me.  We made jokes, we traded mild barbs about the recommended wellness exams and tests that I’m not convinced are necessary or helpful and, wonder of wonders, she even let me keep my clothes on while we met and got to know each other a bit.  At this point, I am willing to believe she is so saintly that she will not die but will descend bodily into heaven.

I think that my newest doctor is indeed different from most of my old ones and, thanks to the Happy LIFE, I’m different, too.  More accurately, thanks to the Happy LIFE, I did something different today.  Because my previous medical immersion experience left me with more than a little stress at the thought of breaking in new medical professionals to me and my “stuff,” I knew that I needed to find a new approach to medical visits.  So, while I was sitting out in the waiting area, I decided to practice the “happy habit” of meditation.  It had already occurred to me to do it in the preceding day or two – so I guess I’d steeled myself a bit against the self-consciousness I felt at the thought of meditating in public.  Plus, I’m kind of old so it’s easer to not give a fat rat what people think.

Here’s what I think happened:  In true vitalistic fashion, meditation allowed me to express a more authentic version of myself by helping me remove the interference of anxiety.  By meditating, I was able to put a bit of space between me and the stress I was feeling.  It helped me stay in the present and keep out of the future where anxiety, fear and doubt live.  Seth Godin, social marketing guru, “define[s] anxiety as experiencing failure in advance.”  I’m thinking that meditation may be the antidote – and gratitude may be the reward.

*I’m using the terms “vitalism” and “neo-vitalism” a la Life University (www.life.edu) to refer to a philosophy that honors the wisdom of life.  It’s a view that respects both birth and death – along with the life that happens in between them – as natural processes that nature has been developing over millions and millions of years.  As a vitalist, I prefer the most conservative, life-respecting and life-affirming choices in health care.  In short – I trust that, when it comes to running itself and healing, my body is smarter than I am.  It knows when and how to run a fever.  It knows how and when to make new cells to heal.  And, when something goes awry, it’s usually from some interference that is preventing my body from operating as it’s designed to.  My vitalistic view suggests that I always start with the most conservative intervention option, addressing disease and/or dysfunction by identifying and removing the interference(s) to my health – with the least invasive option – before going to more radical or invasive options. 

Why Not Me?

Several years ago, I was diagnosed with terminal cancer and given six to eighteen months to live.  Clearly, I was fortunate in a lot of ways since I’m still waking up on the right side of the dirt nine years later.  From what I’m learning now about positivity, I was also very fortunate to have stumbled onto an attitude that, as difficult as that time was for my family and me, made all the difference.  Interestingly, in a way, it was a negative attitude.  For whatever reason, whether it was divine providence or simply accepting my responsibility for my history as a smoker, I never got hung up on asking myself (or God or the Universe), “Why me?”  Instead, I asked myself, “Why NOT me?”

In a way, asking “Why me?” is also to ask “Why not somebody else” – and that felt uncomfortably close to wishing my cancer onto someone else.  I’ve had a similar feeling when praying for safety during terrible storms –  as though asking for safety for my family or myself might be asking to send the storm on some other path that would be dangerous – and potentially more dangerous  for the diversion from its intended path – for someone else.  So, I always add a kind of “tag line” to a prayer for safety by including the idea that I’m not asking for my safety at someone else’s expense.  Selfless concern for others?  Or narcissistic belief that my safety might cost someone else theirs?  Either interpretation bears consideration.

The thing that reminded me of all of this was a passage in Beyond Religion by the Dalai Lama:

“The role of our minds in determining our happiness can be easily illustrated. Imagine two people diagnosed with the same terminal illness, say an advanced form of untreatable cancer. One of them responds to this news with anger and self-pity, obsessively focusing on the unfairness of the situation, while the other responds with calm acceptance. In both cases the material condition, in terms of physical health and suffering, is the same. But the first person incurs additional psychological and emotional pain, while the person with a calm mind is better equipped to carry on with life and continue to experience the things that bring joy— family perhaps, or dedication to certain causes, or reading. The only difference between the two is in their state of mind.” *

So – why NOT me?  As a touchstone for making the best of bad situations, it’s a thought that may bear repeating often…

*Dalai Lama, H.H. (2011-12-06). Beyond Religion: Ethics for a Whole World (p. 38). Mariner Books. Kindle Edition.