A Dramatic Start to My 54th Year

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.

Much love and happy Fourth of July,

Ilene

Closure: death and forgiveness

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 the only unconditional love most humans will ever know. So different from the lives we chose.

A parent’s love, unchosen by us, although m not always healthy but 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 remember, as the parent may no longer recognize heir own. Perhaps in some way Alzheimer’s and dementia take down the open door and board up the portal to the past leaving nowhere to find our common experiences.

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 exhibited no exception in behavior. My younger brother kept me from finding out about my mother’s death. My ex husband sent me his condolences but too late to travel to arrive in Florida from California in time for her service. 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 and my mother’s sister tried to stop her burial after a text message from me alerting them to her wishes. However, it was too late and the cemetery had 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 strong relationship between my father and I went through its share of turmoil and warmth. We were much more alike intellectually and culturally. He handed me Kurt Vonnegut when I reached 10 years of age, Stranger in a Strange Land at 12. He fed my curiosity and introduced me to art and jazz and rock n’ roll. 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. Brain surgery takes away parts of a person’s personality and can leave anger where once was joy and humor. His anger was directed at me and my brother took full advantage of the situation. He fed my dad’s anger like my father once fed my curios young mind. Lots of influence where a blank picture of me once showed his favorite kid. I took second pole position.

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 clearly see 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 it into a book that I hope to leave as a legacy if for no one else but myself and as a gift for my beloved partner of 12 years – C. Yet inter-spaced between the lines and words 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 lessen sadness and soothe our senses of loss because the dead, as far as we know, have their final closure with the exhalation of their last breath. There’s no forgiving us anymore. We can only forgive ourselves for them.

My father wanted a party for his memorial. He wanted me to insure it’s success, and what a success it was. My mother and his later ex wife both attended. Both commented that my dad wouldn’t have wanted it any other way. This was just as I knew as his medical custodian what he meant when he told me how he wanted to come out of his surgery and when to say no to life support. I thankfully never had to make that decision. I also know the gift he gave me were much more meaningful than money and more dear than any object could posthumously express for him. Giving me those responsibilities showed his confidence in my intellect, his pride in who I am as an adult and his unconditional love for his daughter. 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.

Closure with a parent may take years to happen. The end result of such healing can be expressed by his favorite song: by easing loss and sadness and leaving better memories to give, “joy to you and me.”

Cancer and Freedom, Lost and Found

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.

Cancer Personality and The Great Move of the Decade

Is there a personality type that is prone to cancer? Purportedly those who’s personality exhibit the following characteristics do have a higher propensity: highly conscientious, caring, beautiful, calming, responsible, hard-working and usually above average intelligence. One who exhibits strong tendencies towards caring other peoples burdens and was wearing for others, one who is deep seeded and there need to make others happy and be a people pleaser and often internalizes their emotions and has great difficulty expressing them. There’s also an adverse reaction to stress which the person becomes in able to cope adequately with the activities of the tasks at hand. Possibly this causes the physical manifestations one of which might be the metamorphosis of the cell beginning the course of cancer.

“Extreme suppression of anger was the most commonly identified characteristic of 160 breast cancer patients who were given a detailed psychological interview and self-administered questionnaire in a study conducted by the King’s College Hospital in London, as reported by the Journal of Psychosomatic Research. “Patients results are based on statistical comparisons between 69 patients found at operation to have breast cancer and a control group comprising the remaining 91 patients with benign breast disease. Our principle finding was a significant association between the diagnosis of breast cancer and a behaviour pattern, persisting throughout adult life, of abnormal release of emotions. This abnormality was, in most cases, extreme suppression of anger and, in patients over 40, extreme suppression of other feelings.” [http://www.sciencedirect.com/science/article/pii/0022399975900628]

I hope the current situation in which I find myself very stressed out doesn’t cause my body to respond in the extreme.

Moving Residence and Stress

How do you handle huge life events with metastatic cancer? As best as you can and with slow determination. Asking for assistance from your friends and from your family sometimes doesn’t pan out. I have a wonderful friend I made years ago at a garage sale. She was a couple of dollars short and I’d covered her so she could enjoy a few vintage ceramics and beads.

I never expected six years later she’d still be my housekeeper. Over the course of time we’d found commonality in our eclectic eye for beads and for jewelry making. We are drudging through the stress of packing, readying our 1600 square foot townhouse http://www.1481carringtoncircle.com/ , and removing the traces of 11 years of memories as eclectic and varied as the beads I collect. She’s come over to help me pack as we sell our townhouse. She also refuses to take a dime because what once were services have shifted into the kindness of a friendship. She commented that I’d give the shirt off my back, which I literally have done several times in my life. And how could she take money from me when clearly I was the one who needed help right now.

All the kindness I have shown her was reflected back at me in ways I never imagined. When we give it should never hold the expectation that we may receive something in return. But as my philosophy about karma is not to do bad in the world as it keeps you looking over your shoulder at whose anger is behind you. Then you cannot see the good that’s right in front of you and you either miss these opportunities or trip over them and fall on your face.

A change of residence is very high on the stress https://www.stress.org/wp-content/uploads/2019/04/stress-inventory-1.pdf

My stress adds up to just under having a 50% chance over the next two years of having a catastrophic health event. I think I’m already there so I’ve beaten the stress scale by four and a half years. But looking back I had a very low level of stress in my life in the years leading up to my diagnosis, so go figure. Perhaps the subconscious predicts stressors before they arrive to eat us alive. I was planning a change of career and the very day – March 15, 2015 – was the same day I was diagnosed in the hospital and the day I was supposed to start a new job.

You Oughta Be in Pictures!

The house really shows well – I’ll have it even more staged for our open house on Sunday. There is so much work to do after living a full life for 11 years in a home. And our home has been really good to us. I’m grateful to it for giving us positive memories, but it’s time to close this chapter in our lives and move onto the next chapter .

I know intrinsically that this house will be wonderful to whomever buys her next. It’s stable and so well cared for and we feel bittersweet selling her but we leave it with good love and positive energy. After searching for our new digs, I believe you can tell if people who lived in a house were happy and if it looks like a product of divorce or ugliness. Not so here!

In the state of California, if someone died in a house in the three years prior to selling it you must disclose that event to the buyers? I found it morbid and kind of strange. our culture’s obsession with first person shooter games, zombies, and horror films directly opposes the feelings of disgust when faced with real death or the dying. I’d think people would be desensitized to death rather than creeped out by it.

I don’t believe there will be anything to disclose. I’ll make it through the move and ably live to experience the next phase of this life. In just two weeks from now we shall see.