Cancer in the Family

I’m fascinated by the impact our decisions create; some with major historical waves or most with barely noticeable little fluctuations in the air. Does anything really happen for a reason? My short history’s peppered with the lives of my mother and father and their parents. So here I investigate what my father gave me.

Everyone projects their life expectancy with an equation including a family history. Hoping to uncover relevant information, sifting through our historical data sometimes leaves golden nuggets in our miners pans. Some data insists on investigation although the output may never relate to an end result. Pun intended. I found a hand drawn family tree when sorting through my fathers personal notes a few weeks ago. My family going back to pre 1910 Russia, predating Stalin’s takeover and thus you’re reading my words now.

In 1941, my dad came into his life in a Brooklyn, NY posh Jewish walkup. My grandfather, Jack, born Jacob, one of four children, and the middle son of Russian Jewish immigrants. His father, Isaac after whom I am named, was a renowned Rabbinical Cantor who happened to die as the result of vehicular manslaughter committed by a Cuban National in the ‘50s. No breaking tire skid marks were found at the scene, said police, and the driver, a medical doctor, claimed he honked his horn from about a block away when he saw an old man crossing through the next intersection. This Cuban physician, although found preliminarily guilty by a Miami Beach judge and released for trial, was instead extradited and sent running 90 miles south from Miami to Havana.

Not so ironically, Jack had run rum from Cuba to New York during the Prohibition, which in turn led him to a very lucrative career as a purveyor of alcoholic beverages once liquor became a legal substance. Among Jews, four rabbinical groups were approved to purchase wine for services in the temples, which led to some competition for membership. The supervision of sacramental licenses could be used to secure donations to support a religious institution. There were known abuses in this system, with imposters or unauthorized agents using loopholes to purchase wine.

I try not to draw conclusions in the face of such coincidences. But no one ever saw Cantor Kaminsky’s music after he was killed. My grandfather left countless letters from pleading rabbis and cantors for access to the music so it may live on. Jack never relented and all that’s found is one Hanukkah liturgy, still sung today, still felt in the hallowed temples of Orthodox Jews.

His business partnership with his younger brother Morris: stores that sold alcoholism to at risk minority groups in demographically strategic locations around the five boroughs of New York. My grandparents smiled and dressed like movie stars – both good looking and expensively dressed in their photographs: at their cabana at the Fontainebleau pool, in the nightclubs of New York and Miami Beach, holding me as an infant later on in years.

My father took an entirely different approach to Cuba. Instead of capitalizing on the sugar cane fermented sweet rum, my grandfather’s wealth from such profiteering afforded his leftist son (my father was a southpaw as well as a communist) a five year run as a translator who spoke very little Spanish and a decent news caster disguised as a jazz disc jockey (or vice-versa)for Radio Free Cuba. The parallels tantalize even the worst imaginations to seek out commonality in difference. His father looked for any opportunity to show his only son his love and acceptance, while the son looked at these gifts as shadows of something he declared throughout his life as “not quite” what he needed and “never what he [I] really wanted”.

My grandmother, Lee, née Leah Fuchs, born also to Russian immigrant parents, attended high school in Brooklyn at PS 21, graduating in 1921. Leah, a popular and beautiful girl who, after her friends signed her senior autograph book, modeled hats for department stores before marrying Jack in the 1920s. By 1941 when Len, born Leonard arrived, she’d spent her adult life living through innumerable miscarriages and nearly died giving birth to my father.

Amazingly, my father never felt loved enough. Feeling short changed by parents who desperately wanted him, their beloved son experienced the best life could offer a Jewish boy in the 40s and 50s in New York City. A city he loved in return for its embrace of his defiance of his parents’ beliefs. My father became a divorced communist atheist by 1972.

Lee died when I was four years old, and photographs of her in the final years of her shortened life show her embracing me in custom little dresses she had made for me in posh Lincoln Road dressmaker shops. She had found her salvation through grandchild as daughter. I imagine the fact that I spoke full sentences by 6 months helped in allowing her to elevate my young ego and she spent little time without me. She had a radical mastectomy, chemical therapies and eventually died in the hospital and in severe pain, leaving my grandfather heartbroken.

My father eventually died of brain cancer at 71. His personality prior to the ordeal was altered significantly due to chemical changes in his brain. He became incapable of controlling his anger and cursing and mean behavior. The surgeon neglected to tell me what we might expect. Thank you modern medical professionals. Forgetting the closest people to the patient isn’t uncommon with brain surgery, either.

It’s hard not to take such outbursts personally- because it is. It is personal to the one on the receiving end. All of it. When my dad first woke up from his 28 hour brain surgery he cursed at me, yelled and sent me away. We were so close before that yet it took two years for us to repair our scarred relationship enough to have him book a trip out to California which he never got to make.

I used Hospice services with my dad, also with my best friend who died at 37 of HIV related illness. Same scenario for my maternal grandmother who died years before my father in the same loving facility and in the same exact dimly lit room. Ironically though they hated one another. Also hospice was there with my grandfather Jack at his Miami condo.

In the hospital environment for my best friend Allan and later my dad, they were helpful throughout the entire process including wishes for end of life and all the dirty shit for grieving people who do not have the emotional strength to pull it all together. It’s too much for anyone. They also offered me perspective at a time when I was angry for losing two people who meant nearly everything to me.

How can I go on – I go on. Now I’m angry for different reasons but it seems no one wants to deal with stage 4 cancer and a prolonged state of severe depression that’s taking such a toll on me I cannot keep my anger contained. I seriously don’t understand why C still cannot get out of his own way for a long enough time to give me the emotional or physical support I so desire. Then I remember he can’t help it. I feel ashamed for my lack of patience and the need to be here for him is making me resentful. Until something happens.

I know I’m angry with C for having hereditary depression. I hold out my hope like some stupid flag leading a parade of one. I seem to be the only one left in his life, since he isolated himself from everyone else. Yet he’s so much better and I’m still quite angry. Learning to drop the anger and pick up the baton of gratitude must not get lost as an objective if I’m to live a full and rich life.

You see my point. I am angry with all of them to some degree. I’ve spent too much time crying and not nearly enough time being grateful. You see, cancer takes its victims down into places so dark and ugly sometimes we even hate ourselves – we are not humans we become a cancer in a body of genetic tangles as we, the progeny walk towards the graves our greats and grandparents now and forever inhabit.

Yet we, as their hopes, fade in our dying bodies.

My Cancer Philosophy

Cancer doesn’t mean I’m broken or did anything to deserve it. It means nothing to me, actually.

And Karmic retribution isn’t something a person “deserves.”’I believe Karma represents an unclear conscience of one who’s so busy looking over their shoulder at what’s behind them, they therefore trip over what’s right in front of them. Karma doesn’t discern between either bad – falling flat on one’s face – or good – missing out on all the love and beauty that’s available in this world.

I know cancer will eventually kill me. But it won’t have made me a better or stronger person. Having a diagnosis of a terminal illness actually forced me to see the person who I always was. It’s through shear force of my own will that I gather together the very best of the essence of myself. And with that will for as long as I’m alive I’ll heal myself as best I can but not beat myself down when I cannot. Gratitude comes then through my healing in that I can help others.

Writing my experiences as plainly and as real as possible allows others to see my cobbled path and how I navigate the bumpy road ahead. In seeing what I could not see until I’ve passed those tests doesn’t mean that they’re cheating on their own but rather can provide a guide for making their road a bit smoother so they trip less often than I have. Why let anyone’s life be more difficult if it’s as simple as that. If my story is valuable enough to be shared in by others then I have an obligation to tell it as well as I can for as long as I can.

My strength wanes and waxes as my cancer does as well. If you’ve heard this quote as relating to metastatic cancer, there’s nothing said in my opinion that’s more accurate: “living with uncertainty.” Uncertainty paints a picture of my life before cancer. It’s not any different now, so my strength from my experience in dealing with change and not knowing what the future looks like, well equips me to handle this disease.

It’s called resilience.

When the gift of each new day comes in shining through my window I am grateful for the time I can pet my cat. Or hug my best friend. Or even mop the kitchen floor. I can sing while I mop. I can hear my cat purring. I can feel the love of my partner returned to me each time we embrace. And some days that’s maybe all that I can find to seek happiness within – but that’s a lot.

In fact it’s more than I can ask for because it means I have a roof over my head, clean water to mop the house with, enough money to have a loving cat as a constant companion, and love in my life that goes beyond just the requisite. I’m fortunate and richly rewarded by life in so many ways that description of these gifts seems lackluster upon review. Yet even for me, a chatterbox since birth, realizes that some things are so much bigger than me they evade my ability to describe them.

It’s true that certain famous (and not so well known) quotes by others can describe feelings and ideas far better than I. Yet certain universal ideas find their way into everyone’s mind sooner or later. Yet these ideas are informed by experience and influenced by authorities we respect, such as religion or poetry or science. Usually it’s a combination of things that create our personal philosophies.

For instance, a white supremacist believes they’re right to impose their thinking on people not like themselves. They impose their deeply held beliefs that certain religions, races, and ideologies should not be proliferated but stopped by their own hand. I won’t even kill a spider in my house. She has a right to be here as I do. And I’m not saying that if the white supremacist were in my house I wouldn’t put him out like the spider.

Here’s the three philosophical statements that describe where I’m at today. Yet my emotions change, sometimes on a daily basis, yet it’s stormy as it may have been in the past but a more gentle breeze that changes my weather. Cancer has this effect on me:
1. Forgive, and if I cannot forgive, forget.
2. Love is all that matters – in all life and the universe.
3. Death is the natural path of all life; I face my own death with curiosity and grace.

And just as that equalizing common denominator of life is death, the most curoius thing about it is not one of us truly knows what mystery lies beyond this reality or how many realities there are. We tend as a culture in the United States anyway, to dismiss alternate realities as we tend to dismiss death. We don’t discuss it much. People do love to talk though. Hearing someone say that cancer is some kind of Karma is not only ignorabt but dissmissive of alternate ways of being. By doing so we miss learning lessons about living life with grace in the face of our own deaths. Especially those with a stage four cancer diagnosis. It never leaves our bodies and turns our bodies into a machine with an invisible timer set for detonation at an unknown future time. Kind of like not having a stage four cancer disgnosis at least, well…philosophically.

And I know if you’re reading this post you probably will agree that no one deserves cancer. Not me not anyone and not anymore.

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.