Absolutely Late, Lately: Adding up the Moment(s) of Terminal Cancer

Everyone’s got the right to question the respectfulness of someone who’s perpetually late. Or do they?

I recently commented on a blog post with regards to feeling disrespected by people who don’t respect his time because they cannot arrive on time. Ignorance of individual consideration for specific situations never whispered beneath his indignation. My question back to him: perhaps there’s a few reasons that have nothing at all to do with you at all. Some people have limitations and one of those may be effecting someone very close to you either now or in your future: people with metastatic cancer.

Time Stand Still

In several blog posts, I raise points about what changes with a metastatic breast cancer diagnosis. My self inquiry never ends with the conclusions of the posts. I still question the change from (t) time=unknown to t=0 (death=0) due to the incredible number of factors associated with our mortality. The factors are further confused by the many interpersonal relationships in our lives. It’s in those intersections between people one question stands out. It’s a question that no self respecting breast cancer blogger won’t eventually ask themselves publicly.

Probably more self deprecating than self respecting, looking back on my four years here on WordPress reveals a number of mentions of this particular affectation. The most well- meaning of us with metastatic breast cancer finds themselves running behind the clock more than we’d like. I think I may have come up with a couple of reasons, not excuses, as to why we’d get sent to the principal’s office for our tardiness.

1.”It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!” (Lewis Carroll, Alices Adventures in Wonderland)

Most people enjoy the freedom to make plans. Normally everyone lives without having to think much about plans they make day to day, week to week, month to month, and year to year. With terminal cancer, one lives on less than 24 hour notice. If you have a diagnosis of MBC or another metastasized cancer, you’ve probably had plans for the the day, and for which you have had to send the dreaded text or make the embarrassing call to say, ” I’m sorry I can’t make it, ” or “I’ll be two hours late.”

Why? There’s no time to catch up with yourself, looking at the current moment wondering how I got here and wanting to drink in all of what’s surrounding me. I can’t quench a thirst that’s infinite yet has an absolute end somewhere in sight. Trying to grab ahold of everything I drop my minutes like rain in a thunderstorm and I cannot get them gathered back up around me into a reasonable explanation. Not a satisfying one to the party receiving my lame cancellation.

  1. Dear, dear! How queer everything is to-Day. And yesterday things went on just as usual.” (Ibid.)

Nothing being the same yet all things being equal, you’ll find out just how strange life can get in a split second. People disappear who you held dear and you’ll have no reason why. People who you never thought would come through in a pinch, do. And over the fullness of time new people will find a place in your life.

For me, many of those people are either ethereal online support friends, people who are older and for whom age has presented the question of death many times, people who have similar prognoses, and those who have also brushed up against death. Aside from my older friends and not knowing the lateness of my online friends, everyone else who has stayed the course with me forgives my lateness.

If the attention you have ran at a deficit prior to a cancer diagnosis, post diagnosis you’re probably in for a special treat. If you also suffer from fatigue, this seems like a dichotomy.

  1. We’ve no time to wash the things between whiles.” (Ibid.)

Theres now the phenomenal time travel that happens while I take entirely too long in the bathroom.

I spend hours on end with good reason in the brightest room in the house: the potty. I am engaged with the toilet straining against constipation, trying to stop it’s devilish alter ego – diarrhea, vomiting from chemo or any number of reasons, or for the more pleasurable bathing to relieve pain and taking time to relax and practice self care. Additionally finding better ways to wear my bizarre post chemo hair or to cover your my of hair; and, doing my makeup and drawing in missing eyebrows can take up hours of my life, however limited my time may be.

No one wants to look sick. But the less sick you look the more people doubt your level of illness. It’s a catch 22, but a fact.

  1. I forgot.

  2. I remember!

6.”Not all who wander are lost. If you don’t know where you’re going any road can take you there.” (Ibid.)

Wanting more time before it’s all over leads me down the rabbit hole into a place where I get lost. Lost inside a book, a song, a sunrise, a hug, a poem I’m writing, a memory, or a hope for something in a future that can at any moment be cut like a scene in an editors office from a films final print. I’m not lost on my path, though. It’s winding and it’s convoluted and full of time that I’ve somehow let slip by.

Measuring the importance of what I’m up to at one moment versus doing something pedantic like the dishes or the laundry. Writing my next sentence rather than sitting in the living room where my friends are and not having any reason to sit out there with four guys who love me and take me seriously although I’ve been late or a no show on many occasions to appointments with all of them.

One gets where I’m coming from because his constant pain keeps him pinned to the bed for days on end. One has attention deficit that’d knock any 5th grader off his Ritalin. One suffers the continual strain against depression. Ones seen too much to care about time as a concept but cares so much about the people in his life you can count on him in any situation with a one word text message, “help.”

  1. “The hurrier I go, the behinder I get.” (Ibid.)

I’ve come to realize it’s so simple. If those who cannot understand make a little room to fit the different senses of what time we have to expend and not take it so personally, they may even learn something. My life before cancer was so filled with the stress of time and being punctual I have to wonder if it didn’t contribute in some way to my metastatic diagnosis.

Perhaps if I slowed down a little I might have even noticed my physical changes prior to the disease falling like a domino into stage four. But I won’t look back. I’ll simply look at the moment and breathe in all the possibilities right now has to offer. And I hope your time with me was well spent if you have cancer or not. I certainly respect your time as you read and even comment on my blog. It’s your gift and I cherish it.

The history of Metastatic Cancer: written by the losers

The documentation of metastatic breast cancer is written by those of us who lose our lives to the disease. No one gets to write the end of our story with “she lived happily ever after” – but we aren’t losers. We struggle with the language to describe how our bodies ultimately succumb to a terminal illness. No war, no fight, no metaphorical discourse makes sense. The fact that the medical community focuses on prolonging the time we get to spend in our diseased bodies, rather than prevention of progressing to stage 4, evades understanding with the exception of profitability. Each of us walks around with a dollar sign attached to our backs instead of a bullseye. There’s no gun fire heard in the end, instead the cries of pain and anguish, fear and loneliness, and finally one last breath of life exhaled into the atmosphere.

There’s parts of our stories that arise out of discourse between one another in our tweets, our Facebook posts, instagram photos, and our blog comments.

As Churchill stated: ‘History is written by the victors.’ Further, the answers to any questions regarding history are delivered to us by the living, so who can really say how truly corrupted the cannon of medical information we digest is by those treating the people suffering from this disease. The honest and most dependable information comes from the losers who leave behind the richest historical record of all. The gift of our stories tells the truth that should become the data to help inform the people who come after us. Unfortunately there’s very little light at the end of a very long tunnel to lead the newly diagnosed to a better prognosis than death.

Perhaps it was Winston Churchill’s novel thinking about his own dangerous words and bloody victory as it applied to the war through which his convictions and leadership pulled his country’s people. For the most part. Yet the end of the war left an unconscionable number of citizens dead and untold billions in collateral damage to Great Britain. None of the dead can speak for themselves about the way they died or about the atrocities they witnessed or even committed. The United States, late in entering the war, as it’s been far, far too late to fund the research to fuel its war on cancer and other interesting PR campaigns without true commitment for the good of humanity.

Cancer history isn’t written by the winners

In the case of cancer by reading my blog and the words of so many others before and who will come after me, we are creating the historical record of metastatic breast cancer. Our words will outlive us. I wonder quite often after I am dead will my words still carry any meaning. I’ll be speaking beyond the grave to what I hope are fewer and fewer people who need to know that they’re not alone in how they’re feeling.

My blog and hundreds if not thousands of cancer blogs and the recently notable rise in cancer biographical book publishing sends an awfully different message.

Losers write history, too

The songs of the dead will play long after our voices die with our bodies. During the final week of Breast Cancer Awareness month, October 2019 A.D. I decided to look back at my comments and answers to questions posed to me by readers. Some could become blog posts in and of themselves. More often than not, the comments respond to emotional reactions to the relative post.

Here’s a few of my many comments in response to those speaking out in response my posts or on other blogs I read for information, support, and even laughter, I wanted to pull together to share here (edited for brevity) and as provocative fodder for new discussions I hope in the comments on this very post.

Many contain broader ideas about metastatic breast cancer. I hope you find these quotes, though out of context, as interesting as I did. They’re not the blog posts themselves, so you won’t get redundant content but a look back at the history of a metastatic breast cancer thriver – me as well as those to whom I’m reacting.

History is therefore written by living. Here’s part of my living record, and I hope you’ll respond to some of the more provocative comments and keep this discussion alive.

Quote Me

“Cynical and bitter” – my husband remarked on a read of the first or 31st draft, of this post. I said rubbish, my peeps will understand because it’s true. (although an ugly series of thoughts generated this puddle of poesy. A physical setback created a situation where my tendon had locked up, causing the foot to painfully turn inwards and I threw myself in a hot bath, post morning pain meds and fell asleep in the tub. I woke up crying “it’s not fair why is this shit never going to end,” and then out came some inappropriate jealousy of people who got supported because they look outwardly like they’re sick. I try to make every day as good as is possible in my circumstances. Including looking good as possible to somehow trick my consciousness into believing I am okay. Some people can outwardly smile in all,that pink light shining down on thief ‘cured’ bodies. But unfortunately these diseases give us a vocabulary and emotional shorthand that we immediately understand, making rich connections, both on the cerebral and gut levels.”

“Yet it’s important because everyone has such a different experience and it’s important to understand how to deal with things when someone is newly diagnosed especially with metastatic cancer. We don’t know what tomorrow will bring – we cannot make long life plans and our time is so valuable it’s hard at times to hear about people griping about things that mean nothing in the grand scheme of things. I’m sorry you had to go through so much horrific treatment as well – I was already with my second oncologist by the time this practice had gotten back to me. If I’d waited for them I’d be dead already. “

“Everyone must learn what they can do for themselves and try not to freeze up when things seem at their worst. I am the head of my cancer care team. No one knows me better than me and a one hour meeting once a month if I’m lucky these days since my oncologist is so over subscribed. But he listens to me and responds with real solutions that we agree together based on what I want and his knowledge. Still, I wish I could do more for you to help but I think maybe just knowing we aren’t alone sometimes works wonders.”

“Oh it was horrifying and only my persistence and perseverance paid off – I called CalMed and explained my situation and I do recall not being able to hold back my tears mainly because of frustration not the diagnosis since it was difficult to figure out, which was worse. Within 10 minutes I had gotten switched back to my original primary care physician and then was given proper treatments and taken off tamoxifen and put on to aromatase inhibitors, into chemical menopause and began Xeloda at home. I did quite well and even battled my way after changing oncologists twice and finding a surgeon to do an actual lumpectomy to remove a small leftover of a tumor and to get a fresh pathology after success with Xeloda.”

“I did not fare well on many of the injections and had severe responses to them until I was put on xgeva, faslodex and xolodex monthly. That worked but my oncologist only wanted to see me once every quarter and punted my care all over to palliative who are horrifyingly overworked. I then switched to Stanford and have been there almost two years this month. Every December because my original oncologist wasn’t watching closely enough and a mishap the following year with more insurance nightmares I filled up like an oompah loompah with ascites abs was drained multiple times. I only hope this year to be in Hawaii on Kauai as a safeguard to being put in hospital – hey if I do have to go the view will be better anyway.”

“You know as well as I that no matter what country one resides in that self advocacy will get you what you need more than waiting for things to happen to you – you have to educate yourself and make it happen for you.”

“It’s a way to have the patient blame themselves for being a caring person? Everyone has stress. Everyone’s got some form of childhood trauma. Looks like an easy way for researchers to try and finagle their way into the spotlight. Pigeon holing and creating a way to have cancer patients blame themselves doesn’t seem fitting or fair, just cruel and wrong. People back in the 50s were far more repressed and didn’t openly discuss feelings around the dinner table, but the incidence of cancer was 50-60x less than it is today. I suppose those times when abuse took place couldn’t possibly have been as severe as today (sarcasm) but you get where I’m going. Environmental causes increased the incidence of cancer as well as other factors I’m not as well versed in talking about. If love to hear your thoughts- stress is on the increase for everyone women especially which is why heart disease is the number one killer of women today. Cancer is a close secondary
Pain like beauty is more than skin deep. The difference between the two is less than I’d imagined prior to cancer. Beauty takes lots of appointments – so does cancer. Beauty uses all sorts of carcinogenic chemicals to eradicate being ugly – so does cancer. Beauty can be excruciatingly painful- so can cancer. The end result of finding the best way to enhance oneself to look beautiful can end in disfigurement – so can cancer. The endless list in my head goes on for miles. My point, Nancy my dear virtual friend without whose support I’d echo in a wide Sargasso Sea of words, is tha the surface is all we can scratch here. The depth of the itch lies beyond what conventional means alleviates and we are left swimming in pills, yoga, and advice none of which will even touch the emotional break of a heart that knows it must stop beating from the ugly disease killing the body and taking another beautiful soul down with it. God. Cancer really sucks.”

“It’s hard to ask for help and mostly when I do ask it’s too hard for people to follow through on their offers of “call me if you need anything.” So I typically drive myself to and from chemo, and other appointments, etc. No one likes to feel like a burden but read my blog piece on learning to receive as well as give. I feel like it’s a hard lesson to learn that people want you to accept their help and accepting graciously doesn’t allow the giver to feel good about helping out. It’s rejection of the worst kind because neither person wants to say anything to make the other feel badly. It’s a tough one…”

“Your commentary on my blog never cease to inspire me to keep writing and always bring my heart to a quick stop. You remind me of why I started this blog – so those with terminal illness and cancer diagnoses know they’re not alone in their experiences, emotions, and high and low points. While not the same, dimensionally similar enough to feel a virtual hand holding yours and have someone to walk with even if just for a little while. I love you and I care about what you feel and how you feel. Your feedback means so much to me. What a day too – I have my last Taxol treatment Monday next week and then a little break and back on the Ibrance. Maybe the lighting of fatigue and chemo brain can give me the strength I need to write more and start the first book. I thought it would be poetry but it won’t be. And as the draft starts to take form I’ll reveal the type of book and why I chose to focus that aspect of cancer.”

“How it’s it so hard to do this some days and others it seems so easy like nothing’s ever happened, nothing is wrong. Like day into night…I slept less than an hour last night thinking a lot about where my friends are, who I am as a result of their involvement in my life, some had a huge role especially people who I’ve remained in touch with for many years, people who I can see if I hadn’t seen them in 5, 10, 15 years and pick up where we left off. I think there are people I want to see regardless of cancer but in spite of also, if you know what I mean. My relationships have shifted so much, that instead of intimacy I have people I can rely on…it’s so strange. I would much prefer intimate, warm, relationships. Some friends have that some do not. I’m naturally a hugger and a physical person and I give love to people I care about very naturally. I suppose it comes down to not thinking about it as if we have terminal diseases when we see them. That said – If we didn’t I would not be in the company of women who I’ve come to appreciate as my peers and my friends- you included – and I absolutely think I may want to get over to the UK and maybe we all can get together for a day or two and I don’t think it’s out of the relevant range to believe that women like us cannot get a weekend together some by plane, by train, by car, to laugh and talk and actually meet. Wow that’s a thought. And given six months and some funding potential for rooms and such I bet we could do it. Have a think on it…I believe in anything I want to manifest can come true if I put my all into it. And speaking of all, time to get ready for chemo and oncologist appointments! Yikes”

“Terminal diseases will turn a coward into a superhero, a shrinking daisy into a tall redwood, and push us to the edges of ourselves that we never dreamed we could see. There’s no other way than to put it all out there regardless of the facet of cancer that I might focus on that week or day. There’s a lot of layers of emotional pain and energy to explore, though the tendency is for the most prevalent to wind up on my blog. Yet there are so many issues if I have the time I will try to cover – I wonder what people want to read about and would love any feedback regarding topics you find most helpful or interesting to read.”

“A “cure” is a misnomer make no mistake. However to cure each person based on their individual types of cancer and the millions of permutations that caused our bodies to not recognize cancer cells it heretofore killed off with our own immune systems is the key to survival and treating chronic not terminal cancer probably won’t make enough money for research in pharmaceuticals but for the hospitals, cancer centers, and teaching hospitals that tirelessly and for less money work on this very problem. Maybe the arrest of the opioid pushers will bring to light the corruption of such awful people who profit financially on our backs.”

“I wish you peace in your grief. Anyone lost to cancer is one too many. I believe the journey the living make after the death of someone dear never comes easily, and no amount of words make the time go fast enough to find the day when you’re not feeling those awful pangs of the indescribable when a song or some other reminder brings their memory rushing back. I cannot listen to certain music without immediately recalling memories of my dad. I try not to become tearful when I sing along. But any fear of my own death is in leaving my dear ones behind. Love is the tie that bounds life. I’m hopeful to be certain with regards to a curative process and hope that we will find a way to access our own powers of healing through immunotherapy in my lifetime. It’s a strange case when the pharmaceutical companies cannot use a cookie cutter, one size fits most approach to maximize profits. We won’t see it soon enough.”

“As for pain – I’ve had a palliative oncologist both prior to and since I’ve been with Stanford. Palliative medicine is so greatly misunderstood- I am grateful but I am also using opioid based pain meds as well as meditation and mind body deep work. But I hurt pretty constantly. It doesn’t show but boy it hurts. Bone metastasis is just crunchy painful if you know what I mean. I think it’s deplorable your oncologists don’t look at the whole patient and palliate your pain with integrative medicine, such as ontological massage, acupuncture, medication, and CBD/THC. CBD doesn’t work well topically and – opinion only – wastes money I don’t have. Further my palliative oncologist has recommended smoking the oil 3:1 or 2:1 CBD to THC ratio. There are medical marijuana growers who specialize in these types of tinctures. It also helps with my appetite and with sleeping though it makes me a bit goofy, it’s better than most other addictive things we can ingest.”

“It’s often difficult when terminal or chronic illness doesn’t comprise ones daily work routine to remember we all end at some arbitrary time stamp in the future. While feeling sorry for myself over the last week or so, I thought a lot about my loss of identity – and the therapy of writing got my mind to shift as always to a more positive way of viewing what I honestly thought about as wasted time in a career. All the work to climb every last rung on that still male predominant corporate ladder – especially in high tech without missing a single one. But not really. To your point our strength is redirected to navigating the tangoes of paper, contracts for insurance, finances etc. it’s like being the CEO of MyCancer, Inc. Do you miss the daily grind? Maybe I just was glamorizing whats no longer available? Death is death. Everyone’s life ends the same way and it’s the only thing no one has any assurances of what happens once we do die. At a visceral level it’s hard to accept although intellectually we bravely deny any fear. It’s uncertainty I think.”

“The statistics are completely different from the reality regarding the mean lifespan from the time of diagnosis and mortality/ end of life. It’s as individual as the cancer itself. There’s too many influential factors such as stress and environment to really understand. The fear of death never weighed me down much, and I find myself interested in what happens to our consciousnesses after our bodies fail but not interested enough to lose my gratitude for the hope of another day of life. My commentary has far more to do with the questions I’ve heard from others, their fears, and their legacies. My legacy, I hope, is to depart our mortal coil with a couple of written documentations/ books reflective of my consciousness while I was here. A way to travel to the future and bring the past forward for as long as people need to read the thoughts of their predecessors. In that my respect for you and your accomplishments exponentially increases as my familiarity with your grace and your talents increases. Our lives will go on and not have been in vain for having the courage to use our voices to yell out drink the past so that others may benefit from our unnecessary and early deaths due to a disease that’s not only on the rise as a statistical result of the illness we both unreasonably suffer from but that we both use as a platform to grip those who can’t find the words to express how they feel and how precious life becomes after the gauntlet drops.”

“Technology…changes with the will of how frustrated the steel-nerved steady user can tolerate. I’m so sorry you had to go through some irritating stuff to simply post a kind comment. Imho WordPress is the best platform, after TypePad, and far above blogger and the corporate blog software I endured during my short 28 years fighting the good fight as a woman in high tech. I suppose in some ways I hope to leave a similar legacy in the works of metastatic cancer. Working with my words (see my personal tech blog https://techronicity.typepad.com/blog/ – which I no longer keep up but keep online for posterity I suppose if nothing else.) Good news: C is better, and my hope improves with each day he regains his humor and his memory. In some ways depression is a lot like the effects of cancer and chemo, the deathly combination that sticks us like a stamp on a paper envelope. Sometimes my essays ramble on because they can. But this blog comes with too high a price for the expensive toll it takes to walk on a path with the freedom to speak my mind. But speak I must, and for the kindness of your expressions of gratitude I am humbled.”

“But it’s all those yes’s that turn yesterday’s into
Tomorrow’s and waking up to say
Yes I’m still alive on this new today.”

“This particular poem was written in response to a “yes” writing prompt on the Journey Beyond Breast Cancer @JBBC blog. It’s wonderfully rich in content as it’s author is an expert marketeer, writer and one of my online #cancertribe who supports me from a distance, as so many of the writers and readers who have touched my life and for whom my blog has value in our shared experiences.”

“Say Yes, A Toast
To Hope and to help
And to healthier food
To exercise, to water are really good
To Cats no doubt oh positively
But I suppose, i guess, dogs are fine, though sniveling
To Hugs, to expressing ourselves creatively
And to Travel to places, some close some a far
And ommmm… yes to your Breath and for seeing the stars
Friends, new and old even those left behind
It’s for Advocacy and even acting immature
And binging on when you want to unwind
It’s for soft socks, sunshine, and the perfect hat
Yes for Family (including by blood and by choice) who love us and our crap
A big yes for our Carers
Even still my chemo port
To oncologists and nurses and behind the screen support
That’s including our blogs through which we’ve “met”
But pardon the pun, is it coffee time yet?
And lastly but not leastly, a big YES to Marie
For compiling our posts nearly every weekly
With wonderful, bravely honest and willing
To openly share to the lonely, the scared
And say yes we really do care about you and we dare
Through our comments and emails that we always answer
So fewer people feel must feel all alone with cancer.
And I can think of a thousand more YES’s
And probably equal a number of NO’s
But yes isn’t just about false positives
It’s about letting our lights shine and glow.”

A Metastatic Cancer Vacation

I know I’m fooling myself to believe that there’s any real break from metastatic cancer. I know that there’s no mandatory, compulsory vacation days in this new, completely abnormal lifelong career of metastatic cancer. However I recently made some decisions that take into account the enormous amount of energy cancer requires – physically, emotionally, and spiritually. Vacations really don’t cut it, so larger more life shifting actions in my own case were required. No one really seems to know the root cause of cancer related fatigue. A quick search on cancer and exhaustion comes up with sites like the Mayo Clinic and the American Cancer Society stating essentially its a number of things or none at all.

Chuang Tzsu Zen Master:
“There are no fixed limits. Time does not stand still. Nothing endures. Nothing is final… He who is wise sees near and far.”

Not only can the disease in our bodies exhaust us, but the constant activity load required truly is akin to a full time job. As rare as those of us who spend a lifetime working in a career position for a single company are those who live longer than 2.5 years with Metastatic Breast Cancer.Just the mere thought of it requires a nap. Be right back after I rest by eyes and grab a cup of fresh ginger tea.

Recently, my response to finding the energy to continue to live under current conditions and current cancer activity load is sheer exhaustion. Approaching five years de novo diagnosis I’m simply tired. Tired to the soul level. And like with a 9 to 5 job the associated tasks must be prioritized and checked off of an activity list. I knew things weren’t getting done as everything required both for life in general and for my cancer life.

Prior to about four weeks ago my list of to-dos stayed exactly the same for more more time than many things had to be completed. Many of the items on my list needed immediate tending but I just could not bring myself to finish. Simple things like phone calls to schedule appointments with my current Stanford oncologists and others to insure that my new team at UCSF was all ready transition me smoothly. My prescriptions and insurance needed tending to and my shots needed appointments. The level of procrastination simply outweighed the need. And I was creating huge problems for myself through simple denial.

I made one radical decision – to move away from the polluted, overcrowded, downright mean city of San Jose to the winding rivers and tree cover in the foothills of the Sierra mountains. We are currently in an Airbnb house half way through the three weeks we must spend waiting to close on our dream home. We are thinking of it as a mini vacation of sorts as we make circles around our new hometown. It’s a place I’ve only had daydreams of; the kind of place where friendships can spark over common interests. It’s for people who don’t mind letting others merge into traffic and tailgating is left to football game parties not for aggressive angry drivers trying to connect their bumper to your back fender.

I also made a very big decision to leave my beloved and take the available spot for a cancer retreat. I did this with guilt in tow as I left at 5 in the morning to drive north for my second week in two years at the Commonweal Cancer Help Program. I left my dear one with the last of the packing and clean up of our sold townhouse. I was on the fence about leaving him with my cat and the last of our possessions until the very last minute. See my previous post to understand why I so desperately needed to go. But it did far more than that. I’m convinced it saved my life.

Sand tray was the very last activity before I hit the road to meet him up in the area of our soon to be house and here’s the result of mine:

Said Prince Hamlet, “For there is nothing either good or bad, but thinking makes it so.”

I was indeed ready for a week of cleansing in every way. I landed exactly where I needed at a time of high volume stressors. And there’s no discounting the importance of getting away and feeling the safety of being held without guilt In the arms and the security of real love. All this from the dedication of people who helped small groups of eight people affected by cancer for over 30 years. Together they create a peaceful environment to learn about myself and get to the root causes of my cancer.

I came back with important learnings about myself and about self care. Alas I haven’t the foggiest why I stayed off technology for over a week after returning to the real world, perhaps the wandering duo and Simon the cat settling into our final Airbnb after two prior stays, having to punt my oncologist appointment from shear exhaustion and not wanting to make a drive over 3 hrs and actually finding a house all might have a bit to do with it.

The exhaustion hasn’t completely dissipated but I’m working on learning how to not allow it to build up as it had. It was also a creative boost I needed and I wrote about six poems in the past 10 days. I’m going to add to the end of each blog post a poem as a way to give the true inner space of my thinking and of my creativity. Here’s one I wrote and read to the group of leadership at Commonweal. I hope you like it as much as they do:

Why?
Why does it happen?
Because it transpired.
Why are we here?
Because we were hired.
What does this mean?
It means what’s intended.
What did you say?
You said what you meant to.
When do we go?
We’ll go when we’re dead.
What does it say?
Not a word unless read.
From where does it come?
Where everything goes.
Whom do I address?
Who really knows.
Ask any question and
expecting an answer
Is like watching a dance
without any dancers,
And the silence of an instrument
without a player.
There’s no God to question
without a prayer.
So rest your mind –
you are not your thoughts
And without your thoughts
you’re all spirit and heart.

Bone Deep: the painful reality of metastatic cancer

Imagine an unreachable itch. The unscratchable kind. Yet it’s only an itch. Imagine bone deep insurmountable, untouchable pain, like you’ve never felt in your life. Pain so constant there’s little relief but addictive medication, some forms of natural remedies, and whatever you find through trial and error, works for you individually.

Metastatic cancer pain exposes you for who you really are. It’s not for the weak, the faint-hearted, the complainer or the meek who are afraid to stand up for themselves. If your best qualities consist of empathy, neatness, downhill skiing, contact sports, or binge watching hours of television, this type of pain shan’t suit your lifestyle. Oh and if you work, metastatic cancer pain probably won’t help you get that promotion you’ve waited years to earn. In fact, you may even get fired for taking too much time off or for HR simply discovering your cancer diagnosis.

Oh, shit.

You don’t look sick. You dress up to walk to the mailbox if you must or to go grocery shopping at midnight to avoid germs and sneezing kids who can unwittingly give you pneumonia. Variably painful constapation with dangerously impacted intestines from time to time can send us to the hospital.

Constipation alone is responsible for 92,000 hospitalizations per year. (https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hospital-medicine/obstipation-constipation/) So imagine sitting in a very uncomfortable hospital sleeping contraption (the word “bed” seems too generous for the intended result, sleep), getting a jarring, “is it okay if I check your vitals,” at 3 a.m., and a roommate with a privacy curtain separating you from her and the entire extended family. One small kind of weird bathroom with a toilet and a shower stall with the water pressure of summer sun shower and about the same humidity. Now, poop!

Sure thing. No privacy, exhaustion, constant nuisances like night nurses and Telemundo Spanish language television. Everything annoys you, more so than in real life and add to it incredible boredom and it’s not the recipe for bowel evacuation.

Homeward, unbound.

Monday comes and it’s 10:30 a.m. and still I cannot rise. Having overdone it on the weekend, I pay the price of lost time on Monday. The heights of generalized pain and the burning numbness of neuropathy in my arms and hands keep me from getting going.

I lay in bed reminiscing about the days of actually earning money for working. Benefits beyond a paycheck reveal themselves like the unborn babies I lost in my 30s. I hear morning laughter and I’m reminded of the camaraderie of my office mates asking, “how was your weekend?” There’s no one asking and no one to tell about my Saturday and Sunday. No one to sit and drink a bad cup of coffee with nor to whom I can complain about Monday morning Silicon Valley traffic.

I no longer sit in traffic but in my bed and try to meditate on what I am thankful for not what I no longer can do. It’s still painful to think about all that I miss.

Money, its a bitch.

The financial fallout of terminal cancer for the afflicted causes pain of another sort. Juggling hospital bills, finding copay assistance for my $18,000 per month chemotherapy, and finding a way to spread $2400 per month of social security over 30 days of medications, doctors visits causes all kinds of stress. What Dr. Susan Love calls cancer’s collateral damage.

This cost of care presents such a highly profitable market all along the supply chain that our losses turn up sadly on the positive revenue side of so many spread sheets. Even of those companies with seemingly altruistic founders, doing this for their mom, or sister, or wife, dream of the things they can buy with the dollars they’ll reap. At my expense. At your expense. And that includes the medical marijuana supply chain from the hippie dippy growers to the seedy dispensary owner. No offense to anyone but you’re in it for the money.

So with that I’ll leave you with a clip from the movie “The Jerk,” where Navin figures out how business really works. “It’s a profit deal!”

I’m sharing this clip not only to point out the absolute abandon with which the food chain of big testing machines and cancer pharmaceuticals gain heavy profits. It’s also very funny in some ridiculous business situations. During my career as a business consultant specializing in product and service development, I took a trip to Austin, Texas to visit with a customer.

We stood outside of their offices in the Texas humidity laughing at their audacious requests for deeper discounts and free services. The laughter came from the managing engineer who was one of my favorite people to work with. He recalled the aforementioned film clip and we cracked up in mutual knowing of the film. It was so apropos of the ridiculousness of the meeting we’d just left.

That person who brought laughter through difficult times has his own pain to handle at home. I’m pretty sure this difficult client was nothing compared to the difficulty he faces at home. So, here’s to you, Mr. Horgan, for checking in on me and reading my blog, even 15 years after my departure.

Indescribably, Unforgettably, Irreplaceable

There’s no pain like cancer pain like no pain I know.