I'm a poet. I am a writer. I am a woman with metastatic breast cancer. Like me prior to March of 2015: Incurable and alive. My life prior to diagnosis at stage IV consisted of the wobbly first steps of my life's spiritual journey. I do not believe cancer is a "gift" or a "war." It's incumbent on me to share of myself with anyone who cares to take a peak at the moments in my life by..
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 introvert 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.
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.
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!”
Profit - YouTube
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.
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.
(To)live on borrowed time
to continue living after a point at which you might easily have died:
Since his cancer was diagnosed, he feels as if he’s living on borrowed time.
to continue to exist longer than expected:
It is unlikely that serious decisions will be made by a CEO living on borrowed time. Definition of “borrowed time” Cambridge Dictionary Online
The value of living on borrowed time bears an interest rate that’s unpredictable and unpayable. Apparently last December, my body had an amount of cancer physically insurmountable by standard oncological metrics. My disease probably should have killed me by now. How do I find a find a way to absorb such potentially life altering information? I’m unsure how to feel about it, since my recent scans showed that 26 weeks of Taxol had gotten rid of my tumors, and my bones revealed not cancer but the mesh-like scars of healing?
Since last week a cloud of oxymoronic amazement and fear hung low and put a bit of a fog over my generally happy convivial personality. Introspectively and quietly I digested the news my doctor delivered on July 1st. He didn’t expect me to make it to sit in his exam room through much of this year.
As I quickly scanned my mind for clues to his unrealized prognosis, I could only recall a few subtle cues. He became more empathetic generally and more concerned with my stressors at home. He’d say “bless you, Ilene, you’re a very strong woman.” He’d force smiles sometimes. I thought he’d been overwork and just tired.
This week a very competent nurse practioner took my vitals and we discussed my health in general, my increased neuropathy, my overall issues with pain from fulvestrant, and how I’m tolerating Ibrance and fulvestrant combined treatment. If you’re not familiar with Ibrance, it’s a targeted therapy used to treat metastatic breast cancer in patients who are hormone receptor positive by going after CDK 4/6 receptors that basically stimulate the growth of malignant cells especially in metastatic breast cancer. In studies the drugs that are chemotherapy, although taken in a pill form at home has shown an extension of time without new cancer growth and a halt of current cancer growths by about two years. In metastatic terms we like two year life extensions.
However the drug still costs $18,000 per month. I lost my Ibrance after the second dose spilling 26 capsules down the toilet. Yet here I am alive and with my disease stable and poof like that once again Ibrance gone. I cried from frustration and worried for my life again. But the nurse practitioner put my mind at rest and called Stanford’s pharmacy where I am now getting my eyebrows from and got me in an emergency prescription through my new Medicare part D insurance company Blue Shield and all is right in the world. I am back on the medication. Borrowed time indeed.
During the same visit my oncologist came in to see me. He revealed that he didn’t think I’d make it through March of this year. He said, ”keep continuing to amaze me.” I, his miracle kid, amazed him? The clues of his grave and real concerns about my mortality started before the commencement of my appointments. He projected and telegraphed this through his change in facial expression, with the bounce in his step and via the quickness of his pace when entering the exam room. He looked at me quizzically and it seemed to me quixotically in the fanciful way one might peer into a lions den and hope the big cats weren’t hungry.
Prior to May’s PET and June’s CT scans he quietly would sneak up on me with his lips pursed and brow furrowed. “How we doin’, ” he asked with hesitation. ”Great!” I’d exclaim. And given the circumstances it was true. My white blood cells and liver function both responded by remaining stable even with Taxol for 26 straight weeks.
Yet there’s another twist to my life extension and projected expectancy. If you’ve read my earlier posts from December of 2018 regarding my hospitalization it was due to a complete cluster fuck by the Medicare part D insurer Silverscript, Pfizer, a nurse practitioner at Stanford Cancer Center, and the problem of the drug costing so much money that no one without insurance except the hyper rich can afford it.
It was due to a fax that the Stanford nurse practitioner never sent to Pfizer for a three month hardship supply because my insurance was dropped by Silverscript and the CVS Specialty pharmacy (both owned by CVS talk about the Fox guarding the henhouse!). I went four months without treatment and landed in the hospital for over a week until I went poop. And as all of you who have cancer of course any kind know, your digestion is of utmost importance to your oncology team!
Today was a bed day. Never got up once. I did bathe and fell asleep in the tub, but I needed to rest my body in the transition from one poison to another and from the psychological internal melodrama of finding out I should be dead. I’m glad to be here writing this post at the four year four month mark since diagnosis. I’m pushing hard for year number five, and here’s three things I’ve learned through this waking nightmare called metastatic cancer:
Meditate. The mind truly is connected to the body and I know along with everything else I do this is mission critical as much as keeping stress to a minimum.
Cancer is about money and metastatic cancer patients are loose slot machines that pay out consistently like the ones near the entrance to a Vegas casino to lure people inside. Follow the money if you need something like medication.
Trust your instincts and listen to your body. For instance right now I know my ascites is acting up and I’m going to push for a draining periocentesis since sleeping morning to morning is one way my body tells me to get a move on with the procedure.
Ah, dear friends, if drama comes in cycles, I hope this spin round the sun is a mere blip in time. But aren’t all things in the end?
First, my friend who lost her job and since living here with us instead of in her RV on property owned by her uncle. The property sits so close to Yosemite that it it left with with no internet access and little cell service after being simultaneously booted from her house in Reno by her landlord who is selling the house, has landed three high level tech recruiting positions in the span of two weeks, with two of her three kids). The third child is my cancer god daughter and illustrator of my book based on the blog with more of my musings on life with stage 4 cancer. She recently married Autumn her wife. I met her and her family while she dated my 21 year old step son and now she’s married to a girl, which says all it must about my stepson.
Meanwhile, C had a rare yet bad reaction to his strong MAOI inhibitor after three great months and started passing out and doing very unnatural things for his usual conservative public persona. Just when we were in Auburn, CA for house hunting where he lost our car key and my god daughter and wife drove him home shirtless in the back seat of their Prius. Upon arriving home my neighbor and ex-realtor came running from her garage pawing him and exclaiming are you alright? Did she do something to hurt you? Are you okay? He said get off me I just need to sleep and god daughter yelled as she ran interference like a linebacker got him successfully inside safe from the claws of said neighboring ex-friend.
He went stumbling upstairs to open the safe to retrieve the key fob and fell asleep right there. Said newlyweds drove the key 2.5 hours back to me where upon I got dressed and had to cover one eye to stay on the road due to bad eyes from 26 weeks of taxol chemotherapy. This trick wound up turning a 2.5 hour drive into a 5 hour drive with lots of eye drop stops and bad coffee. The next day after arriving home to take care of tippy canoe I received my Ibrance CDK3/4 inhibitor.
I was so unnerved and sleep deprived, battling my neuropathy and loss of feeling in my hands which is at an all time high, that while attempting to take the second dose, I dumped them all in the toilet. God is telling me “too soon for more poison put it down for this month.” $18,000 down the drain. Teary eyed I kept C in the upright and locked position for a day or so more until he could walk without falling over from a brain flooded by serotonin.
We finally have a contract with a wonderful and experienced realtor to sell our house. This comes after my 10 year supposed friend and neighbor refused to quit splitting my spouse and I apart telling us both different stories, flirting with C and pissing me off royally. Now we must find a house in the trees to make a better life for us both away from the nasty people in San Jose and where I can write, make art, run my Etsy shop and decorate in light, life embracing colors rather than the goth chic look of of our current dwelling.
Oh, and I turned 54 in the midst of this shitstorm. A fine way to get all the drama out of the way good and early this year.
None of us thought we’d die before our “time.” I think it means our presupposed allotted lifetime into old age, perhaps our 70s or 80s. Seeing grandchildren grow. Watching as our bodies change with age, seeing our partners creases form around the same eyes into which we’re used to gazing. Death from stage four cancer didn’t occur to me as my ultimate decider. It did erased the path to the future I’d laid out in front of me. After diagnosis I could find no place to land my next footstep.
I miss my parents these days. The path I’m on no longer leads home to them, either. Their presence represented home for me, which I only realized after they died. No longer could a path carry them back to me, either. The warmth of parental love would be welcomed. That love a parent usually feels for a child no matter what age or stage in their relationship. Death ends an irreplaceable bond and three only unconditional love most humans will know. So different from the lives we choose in our lives.
This unchosen love, not always healthy though biologically necessary in childhood, becomes evident at some point in our adult lives. Hopefully we work out any resentment or negative emotional turmoil and reach a mature understanding of one another before they die or as in my mother’s case, before memory becomes only the child’s to know as the parent no longer recognizes them as their own. Perhaps in some way Alzheimer’s and dementia take away the open door to close on the past, the one to hang a big sign on that says I love you.
My mother died from Alzheimer’s just before her 74th birthday. Too young for my family, and too soon for me. Money somehow takes over the priorities in many families. My family showed no sign of exception. Unable to get to see her or to get to Florida from California in time for her service, my brother kept me from finding out about her death until too late. She wanted to be cremated, and many times in my life had me swear I’d not bury her. Mom was terribly afraid of being buried. My brother tried to stop her burial after a text message from me alerting him to her wishes. However, it was too late and the cemetery already embalmed her. The embalming process made cremation no longer an option.
There’s a bond between a first born daughter and a mother. At least that’s what mom told me. Do you ever hear yourself speaking your mother’s words or her idiosyncratic phrases sometimes? I know I think to myself, “god, I sounded just like Elaine!” And I look like both of my parents. There’s no doubt a genetic blender swirled them together to create me. But they had very different deaths. As
different as their lives.
The relationship between my father and I went through its share of turmoil and warmth. Never did I doubt his love for me until after his first, and only, 18-hour operation to remove about 50% of a huge benign mitochondrial tumor. The big ugly thing grew slowly and lodged itself against his brain stem. It also grew tendrils that wrapped themselves around his cochlear ear bones making balance a trick – and showing us the need for an MRI. Those tendrils seemed to reach out and give us the finger giving new meaning to #fuckcancer as if it were tweeting #fuckhumans – as if.
I flew to Miami after a rousing bout with prediabetes and an annoying loss of mobility of my left foot. A neurologist asked if my blood sugar got tested and if diabetes ran in my family. Yes it ran rampant on my mother’s side and my sugar tested 265. I dropped 25 lbs and looked rather grayish. A swift change of diet and no more wine (gasp!) took care of that problem.
But my family is prone to rumor mongering. My brother used it as an opportunity to convince my relatives that I had to be a drug addict and they’ll choose to believe a good yarn before the truth. Most of them doubt I have cancer, so on some level it’s conceivable. Hey, you know it’s easy to hold down an executive level job for nearly three decades as a full time drug addict.
It’s not easy being a woman in a male dominated field and my long and successful career abruptly ended the day of my diagnosis. Dense breasts kept me from early detection and stress spoon fed cortisol to the hidden tumors growing beyond my breast and into my bones before it was caught. Now four plus years later, my mother has been dead for about half of this time, I consider why she was told it would be too upsetting to see me and I was not given any information about the facility in which she lived. If my life were any indication of overcoming hardships this wasn’t one I could put up a fight for from way across the country and without any family willing to support my need to see her. I never intended to relate my cancer to her, but somehow I believe she’d have known regardless of her brain turning her into someone who might not even recognize her own daughter. Maybe it was for the best I didn’t see her that way, but I’ll never know.
I do want to say this, terminal cancer allows me to see clearly through fine tuned lenses the importance of love and forgiving. And if you cannot find forgiveness then to let go and forget. I’m equally as imperfect as both of my imperfect parents. And long ago I forgot those wounds left unhealed. I forgave my own foibles as I forgave them theirs. And as quickly as that — my wounds surfaced and began to heal. As I am the delicate mix of those two who raised themselves more so than me, both abandoned me at different life stages, they also tried to return to heal their guilt, which I admit now I was not ready to completely forgive. But if they saw me now I know they’d both be very proud of me. Grace under pressure exhibiting empathy for others and a spirit of giving where there’s need.
I leave these words in this blog, and hopefully expand to in a book I hope to leave as a legacy if for no one else but myself and for C. Yet inter spaced between the lines are my parents. Having closure with them came to me as I’ve taken a long time to think about what to say in this time of my life about such a difficult topic as this. Closure happens as it should when we are ready and cannot be forced by funeral, cremation, burial or memorial. It may happen while they’re living or not. Either way closure happens for the living to make us feel less sadness and soothes the loss of someone as because the dead, as far as we know, have their final closure. There’s no forgiving us anymore. We only can forgive ourselves for them.
My father wanted a party for his memorial. He wanted me to insure it’s success and a success it was. My mother and his other ex wife both attended. Both commented my dad would not have wanted it any other way. And just as I knew what he meant without words how he wanted to come out of the surgery and when to say no to life support, which I thankfully never had to do. I also know the gift he gave me was much more meaningful than any money or object could express for him posthumously. Giving me those responsibilities showed me his confidence, his pride in who I am as an adult and his unconditional love. I can still feel it as I can still recall so brightly the 250 or so people at his memorial singing with me, “Joy to The World,” by Three Dog Night.
When I think about it, anyone with cancer or who’s had cancer suffers from many losses. Can we boil it down to a loss of freedom? In a way we’ve lost many of the freedoms they once we took for granted.
We’ve lost the freedom to make plans long or short term. Gone is the freedom to have a week where we don’t have to worry about our ability to keep an appointment. Further, we’ve lost our freedom to plan on vacations too far out in advance. And in some cases we lose the freedom to make certain decisions for ourselves. And what I mean by decisions, I mean our cancer actually makes the decisions for us.
For instance, can we really decide, as I am in the throes of right now, to move to a new house in a new city? Perhaps cancer slows us down so much that we can’t even meet deadlines required to sell and buy a new home? The Many mornings when I can’t wake up to take the 2 1/2 hour drive to see the new city and to experience it that’s a freedom that I wish I had. Maybe we could’ve even moved even further but alas I don’t have the freedom to travel quite as far as I used to. I need to be close enough to a hospital and to a cancer center and find a good oncologist. I’d also like to be close enough to an integrative health center, but I know that’s asking for a lot.
Most people can enjoy freedom in their lives day today week to week month to month even year to year. With cancer one lives on 24 hour’s – or less – notice. Have you ever had plans for the following day, waking to know you had to make that call and say I’m sorry but… fill in your excuse here. The excuse of pain. The excuse of exhaustion and fatigue. The excuse of just not feeling up to it. That is not freedom that is prison.
Cancer puts us in a prison behind the bars of our bodies. Ironically, our bodies become the thing that holds us behind bars shackled to a disease that’s inside of us. A disease that’s using our own bodies try to kill us.
Essentially were on death row.
Yet even people on death row sometimes receive a pardon with a state elected governor intervening in their impending execution. Sometimes I wish I were on death row instead of having metastatic cancer. Frighteningly as it seems it may be a lot easier than living in this body that creates this jail and causes this lack of freedom.
I suppose it’s not all that bad. Death in someways is the biggest jailer of all. We lose our freedom to be here with our family and friends. We lose our freedom, as far as we know anyway, to do anything wonderful and to be with the people that we love. Yet we are strong and beautiful no matter what has been cut off or cut out of our bodies, or how deep the cuts go in such painful and violent surgeries and therapies.
But there’s an upside to all this. I must believe things aren’t so abysmal. And it’s not so much that freedom been taken from us. We also have freedom from certain things, too. We have freedom from people walking all over us, people taking advantage of us, people being disingenuous to us. It’s sad that it took cancer for some of us to realize we didn’t have to put up at some of the crap we used to put up with. So we do have some new freedoms as well. We have the freedom to get in front of the line if you’re not feeling well. We have the freedom to ask for an upgrade on a flight. We have the freedom to ask for an extension on a bill since our financial freedom‘s have all but left us, taken away by the astronomically high price of cancer. We don’t have anymore financial leeway or the freedom to spend any money on items that it might just be small luxuries for ourselves. We’re too busy trying to figure out how to pay for our medications and our visit to the doctor and for chemotherapy and other types of therapy.
But we do have the freedom every day to wake up the new day and say hello to the morning. And we do have the freedom to walk in the sunshine or in the rain, or in the dark or in the light. We also have the freedom to think for ourselves and that freedom is the most cherished one of all. We can be our own best advocate. We reserve the right to say yes and we are liberated to say no to what’s being offered to us. So as we get near the first day of summer, which is also my birthday, and the longest day of the year which makes sense if you know me, and as we get closer to independence day in the United States let’s think about how independent we can be from cancer and from the negative perspectives we may have had prior to our diagnoses. I think about how independence and freedom are absolutely and intrinsically connected in my heart and your mind.
Perhaps use your cancer card this summer to just take a break once in a while. Just relax and remember we all have the freedom to breathe in the air and to love without boundaries. How lucky we are to be alive and still enjoy that freedom.
Walking up to my weatherproof face
Say, “you look great,”
(With the implied italics on the great.)
My invalidly clear skin,
Such wise wild eyes,
Naturally open up wide,
“Wow, you look great!“
Could you spare a surprise?
Shuddering at the danger of such a storm
Surging through my veins like an impulse
Holding back the invisible force
As you to recoiled.
Do you recall the dress I wore that lemonade colored afternoon?
How I make lemonade from such a sour fruit?
I don’t think
About my v-neck or recall how I flowed by you
Last time we met.
Unlucky chance as
Uncomfortable yet innocuous. Maybe
A mall or a supermarket?
In an aisle with its Chia seeds, with its quinoa,
With its turmeric or with its masala, or with its free green tea?
Did you try some new found red fruit
Ubiquitous and misspelled as often as the word misspell.
Say it again:
You look so shocked that we must do lunch.
Face red over the menu
Its dishes unpronounceable.
Those one named joints like Spoon or Fork.
Those restaurants where everything on the list you exclaim and pronounce, expertly.
If it came down to the question of my looks,
Would you reply
Why thank you
Oh, you’re too kind.
Leave for home alone
Or ask me
“why do you ask me?”
As though you were the sick one.
Overrun with a malady,
Melodiously, waltzing to
A “thank you” with a sing song voice,
High and staccato
But sad sad
Rememorys of quotes,
Reaffirming how strong, how beautiful, how positive?
Stop – the compliments overflow in my former cups.
How good do I really Iook?
Is it true or
The way shock looks good on you?
How good does it look not to be sick?
Not to lose?
I want to win the rights
to own my identity.
The right to keep my hair.
“You kept your hair!
I look fabulous.
Would you recoil if I retorted
Out of some joke at the expense of your boundaries?
Your fence affronted
At my acerbic wit.
To whit without bullshit.
You commend me for my strength.
And then worse than all the worlds’ compliments:
“I’ll pray for you.”
As god walks away to hit the drugstore
Along the weathered path home
No kneeling at the counter of
Optimal opioids and malcontents.
So, gaze inside every
Each shop window along your route.
Let the looking glass take you to the other side.
Take a snapshot of yourself inside
After the infusion.
It’s not permitted by punishment
By subcutaneous injections
I do look great.
Tonight about 7:00 after chemo, I fell asleep leaning back in the driver’s seat of my Mini in the car park adjacent to Stanford South Bay Cancer Center. A deep, unpredicted snooze just after my second to last Taxol infusion. * Apparently, I’m deathly allergic to yucca, the tree Taxol is extracted from, and I stopped breathing during my first full strength dos back in January. As a result of this not breathing nonsense, my oncologist’s orders now include 50 mg. of IV Benadryl through the three pronged port in my right chest wall.
Then comes a hard, dreamless nap. Sitting snoozing the clay gray recliner, tucked under a nice clean warmed blanket, a soft gentle breeze of the air conditioner woos me toward unconsciousness. 30 minutes later, the nurse wakes me to ask if I will, “recognize my name and date of birth by reading the print on the bag,” which I slur aloud for her to decipher and back to lala land I go.
Waking to the sharp beep beep beep of the monitor letting everyone in the four story building know I’m done, a nurse I’ve never seen before rushes over startling me. She asks if I’m okay to drive. Then she begins the process of unhooking my port and rushing me out of the center. I can hear the always annoyed charge nurse asking her, “is she still here?” “YES!,” I answer for her. Jeeze. Even five boxes of gourmet brownies and blondes weren’t enough to make my twin final infusions more pleasant. No brownies for you, lady!
In the car park, where my second nap took place, sometime between 7 and 8:15 as I slept, my neighbor texted to warn me, after I’d visited last night with her and her teenaged son, that there’s a very very bad flu infection that her son caught and that I should stay home and out of public for a while. A week she advised. Her son had a 101.8 degree fever and projectile vomiting, so as they waited at urgent care with other flu sufferers, she texted me. Her tone was somewhat panicked; likely he was contagious the night before seated a foot from the television with headsets on playing a first person shooter online video game. I sat with mom about five feet away yapping for about an hour begging her two dogs to stop jumping on me and scratching the shit out of my legs.**
I arrive home about 8:45 starving but sit down to write a poem, sandwich instead of a proper dinner in hand. I’m immediately happy with the result, inspired by a post on Robin McGee’s blog, the book eponymously named for it, The Cancer Olympics, she includes a song with each post to evoke a mood or her feelings or to create a more upbeat environment. The post is a goodie and so is her book. Recovery, Homecoming, and Gordon Lightfoot’s Your Love’s Return”
This life with cancer, with it’s forced retirement, compromised immune system from the treatments, fatigue, pain, and a life full of unknowns and mysteries, stress and anxieties, I still have hope. A wonderful writer and psychological counselor, Karin Sieger ‘s blog includes a post from a request to submit favorite inspirational poems and I submitted three. Read her inspiring quotes from cancer survivors and thrivers here .
This is for you Robin and for you Karin, for enriching my metastatic and making it a little more livable.
Invading my body with water
Washing my mind with a drink
Cancer infuses by rushing to slaughter
Every cell, every organ, everything.
My dreams rust and squeak as I walk
In a dream impossible and unknown
By erasing misbegotten memories
Ugly faces of the impossible and unknown
Whose lifeless bodies lie dead in an armory
Too heavy for the metal, I’m warned.
Sickness steals sleep under conditions
Of cancer, impossible and unknown,
Squatting inside cells without permission
Living on the land of the corpse I called Home.
A map I drew of places impossible and unknown
Lines and roads point directions to one light towns
Etched by the hand of a writer in stone
Furiously chiseled before the words “we found…”
Passing by shores waves slap and erase
My memories of flights touching down
Furiously scrawling recalling the places
Using hands, now impossible and unknown.
Using hands, now impossible and unknow.
*As I sat writing this post, I find a new spell checker auto correct update forgot to learn the name of my treatment, now changing “taxol” to “taco.” Who wouldn’t rather eat tacos then get chemo infusion of a derived therapy from the bark of the yucca tree.
**Why do people feel the need to defend a pet thats untrained and causing some damage to a houseguest? How about it takes me 2-4 weeks to be rid of the blood blisters caused by those nails.
I contend, against what some might disagree with, that the fundamental rules of the road still apply to relationships even after a cancer diagnosis. Mind you, special circumstances arise like depression for either partner, Post Traumatic Stress Disorder for the patient, anxiety, survivors guilt (if you’re not stage four), and an inability to partake in sexual activities as you once enjoyed. This is true especially if you’re undergoing treatments like chemotherapy or radiation, and during healing from surgeries.
The endless list of caveats, not excuses, swirls around the bedroom like the static electricity before a storm – it’s invisible but we can all feel its effects. Sex in the time of metastatic breast cancer can leave women feeling awkward, shy, unattractive… In some cases sex can pose a medical danger due to the suppression of the immune system by treatments. The act of intercourse or the insertion of (fill in the blank) can tear a very delicate vaginal lining allowing bacteria to enter the blood stream. I’ll leave it here for you to draw your own logical conclusions.
A host of various challenges beyond physical intimacy can create a hurricane gale force wind of yelling in the living room, too. Not to mention the generally debilitating fatigue and insomnia causing scheduling mishaps. Financial burdens cause cancellations of plans and much needed vacations that must wait, or in some cases never ever come to fruition.
Those two examples, complex and full of emotional heaviness, are just a few in a list of “collateral damages” as Dr. Susan Love refers to all the plights caused by gynecological cancers . But cancer doesn’t have to pull up the roots of a strong relationship, nor does it effect the ability to execute on the basic blocking and tackling of keeping love alive in every couple’s relationship playbook. I keep a laundry list of things in my mind that I know require my attention to protect whatever got us together and keeps us together.
We like to believe cancer changes certain aspects of our personalities, generally for the better. We also must differentiate between chemo brain when applicable, fatigue juxtaposed against raw intelligence, common sense, and kindness. If we were jerks prior to cancer, chances are we are nicer but still jerks after cancer. Irrespective of side effects, cancer probably cannot make you a complete idiot either sans a few IQ points from whole brain radiation, god forbid, either.
For example, there’s no excuse for not keeping the anger and hostility in check in lashing out at your mate. That’s a stupid use of your cancer card. A mate who didn’t ask for the role of caregiver and primary earner, if these weren’t your beloved’s role as it probably became on the day you got handed your cancer card and membership in a club you never wanted to belong in the first place.
I try to live by how I wish to be treated, though god knows it’s not always possible. On the days when I find myself in a bad mood I stow myself away with apologies in advance, or if I’m up for it I vacate the premises for a while. Generally speaking, as was in life before cancer leaving for a spell makes the heart grow fonder and stupid arguments forgiven if you can even recall what the tiff was about in the first place. A short term memory lapse may be indeed be the single upside due to chemo brain when it comes to silly arguments. A nice thought anyway.
Yet, cancer can tear apart even the most stable of relationships. That is prior to diagnosis. In my own case, the C’s depression nearly did us in but I’m not the kind of person to cut and run when the chips are down. And he’s been better for a couple of months now and I’m certain I made the right decision, although it was difficult at times to do the right thing.
Reversal of Fortune
Many people disagreed with my reversal of caregiver duties. I’d been advised he should be taking care of me. I thought long and hard about it and I found a very counterintuitive conclusion: my mind was not on my cancer and by defocusing my energy from thinking about my own illness, I didn’t succumb to self pity. The pity party never got started, and as we do not know how long I had cancer before my stage four diagnosis, it’s been at least six years very likely I’ve been walking around with breast cancer.
Prior to four years ago, the C had a very high stress job at the worlds most prestigious and popular company as a senior scientist. For 10 years I played a key role in keeping him and my stepsons healthy and happy while holding my own in a career that ended the day cancer began. He’s still supporting me with a home, an automobile, money when I absolutely need it, etc., and for lack of some of those kinds of stressors I’m very, very lucky. And I know it, and now that the big D (depression) has ended he doesn’t ever think to bring this up as a point of contention. During the big D, C resented me having to rely on him. For now, we are past the big D, and we are getting along better than ever. With caution and the proper medications, that is.
Ilene’s golden rules of a peaceful relationship
The following comprise a list of free, no-cost high value things you can do to strengthen your relationship at a time when many fall apart for various reasons and whose fault can be either person.
So try as I can, I:
Hug and kiss
Be a best friend
Hug some more
One little bit of smack talk is treacherous to a marriage. One little bit of love right now – even a knowing look of “it’s me, don’t worry I got you,” will play in Peoria every night. There’s some very basic things my 53+ years have provided me through experiences in my understanding of men, helping me find a peaceful way to travel from Venus to greet my martian and meet him half way.
A few good general lessons make sense whether cancer invaded or not:
Don’t ask “what are you thinking sweetheart.” He’s not thinking about anything. Really.
Change yourself, not him. Help him be a better him, with augmentations like a shirt he’d buy himself. If he needs you to help out, he will ask what to do eventually.
Those two round things in a bag in his pants are his to enjoy . Let him keep them. He has to protect them to protect you and that’s his job because we aren’t that evolved as a species yet.
This keeps me out of the cool feminist refrigerator but I couldn’t care less.
You do look fat in that dress/ skirt/ shorts/ jeans so don’t ask him to take the beating for it.
If you don’t have your own interests get cracking or crafting and pursue them outside of one another and outside of work. Life’s not dull, the same memories replayed and infinitum, are.
Privacy is an indelible right for anyone so do not go through anything of his ever. Never ever. Not a cell phone, not email, not the glove box of his car.
If you don’t leave for that place you intended to chances are you probably,y never will, either. Fun must become part of your routine both together and apart.
We will survive
Without the few aforementioned best practices, a couple won’t develop the foundations for a future and for love to find a higher ground above any kind if illness. You can call me a romantic because I am. And I brought breakfast in bed to him 90% of the days we’ve been together. I also follow my own advice. I didn’t fail, but yet for a marriage go on while starving it of love one may lose their life as well from the stress level brought on by a breakup. Know that to go on whatever path or direction your lives may take together, remember to be BFFs first because everything else will follow in the footsteps of your good choices…
The forest of cancer and the trees of love
… even in the wildest winds there will be one last twisting deciduous leaf on a fragile white fir branch way in the back of the shallow foothills. If it’s alive you’ll find it. The leaf reminds us in the forest there’s a tree with hope of life clinging to it as we must cling to one another even in the harshest storms. As the tree seems reborn in the springtime, love can withstand wintertime, too.
Who wants to die without seeing everyone you’d want to see and saying all the things you want to say to the most precious gifts life has to offer: of friends you make along the “long and winding road,” to quote Lennon and McCartney. I’d venture to guess very few people, if anyone, would pass up such an auspicious opportunity. Or would they?
Receiving a terminal illness diagnosis, like metastatic cancer, can cut the human heart out like a serial killer with a hunting knife. Stunned we watch in horror as in his hand your life quickly fades to black as he shows your heart to you, blood through his fingers right before the light in your eyes burns out, extinguished forever.
Why do I imagine such a vividly gruesome metaphor for what should be a series of happy reunions?
A day in a life
Ahhhh. My bath time. The time of each day when I reflect on my self care and I give myself a physical and mental check up. Some time to meditate, listen to an audio book or music or both. Or do a Zentangle focused drawing tile. If you’re not a visual artist like me but want to learn to draw, try the Zentangle methodology. It’s great for concentration and for relaxation and it truly improved my confidence in my ability to create hand drawn artwork. I’m even proud of a few of my pieces!
Stumbling into my peaceful bath ritual came The C. Innocent as the slightly autistic driven snow, he offered,”If you need to travel to say goodbye to some old friends don’t worry, I will take care of your travel costs,” offered C last night as I sat in a hot bath. I sat with tears falling into a bathtub of steaming water. Such a thoughtful gift brought about a tearful response. He tore at my heart while giving with his own. He left me alone shutting the door, quietly walking away, feeling upset and confused.
Why did I cry instead of showing my gratitude? His generosity shattered me into a hundred little shards of painful fragments. Pieces of sharp broken promises of a future. Another day in my life, post-terminal illness diagnosis. I’d heretofore avoided the subject of visiting old friends. There are people I frequently daydream of seeing again, who pop into my minds eye along witht the feeling that I might not see them befor I die.
*See stage 4, that’s my survival chance beyond five years but I could never play by the rules so these numbers are mere poo flung out to scare me from Dr. Mary’s monkey cage. It’s been four years and two months since my diagnosis and likely much longer since I’ve had my chance to begin with before it went raising my body like a pirate.
On our way home
I hesitated due to the ravages of chemotgerapy to visit with an old friend who came from Paris with his 22 year old son to the Bay Area. He and I last saw one another 12 years ago when he dropped me at the train station in a small town down in the southern mountain region of France. We were not too happy with eachother at the time. But maturity and sense took over in the span between then and now. Meeting him for an hour before he had to check in I was not nervous but excited to see him.
Funny how cancer gave me a strange confidence in knowing it didn’t matter how good I looked. It didn’t matter what I wore, because neither of us will remember our relative fashion sensibilities as the highlight of our brief yet meaningful encounter. We will recall how it felt to hug one another and to feel the connection of a true friend and the kind kind of love that’s without beginning or end.
Moved to feel the connections we make along the way with those who travel along life’s path with us, authentic and deeply touched and indelibly changed by that very beautiful place only we know while joined with another spirit. Through the years we expand on our experiences together and fold them in on our consciousness. Our expression then takes on a higher power, two squared if you will. We better ourselves because of an instinct to find other souls in a sea of possibility. This I believe is where our instincts must take over.
I trust my instincts more than ever because sometimes that in and of itself is what was changed by another person. The innstinct infuses us with life and light and love. For what is love but the purest form of human instinct.
Ticket to Ride
Try as I could I couldn’t but cry for being happy to have seen him… knowing it may be the last time. But perhaps not so until we meet again…I am here and as long as I am alive there is hope. With hope comes possibility. And I have hope there will come a day when we can hug again.
Yet we can only live in this moment. It’s all anyone can do. And I ripped the bandaid off of my fear of the next time I see an old friend, perhaps being the last time we may see eachother. Maybe C’s right and it’s time to get traveling and live again to see those people who have meant so much to me over the years, and to the person I’ve become. Because whether or not they know it, I would never have the strength of spirit to dig up the tenacity required to go the distance with metastatic cancer.
Never underestimate how you’re loved. It’s more than you think and never too late to find out.