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

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.

Almost half of people diagnosed with cancer find it hard to ask for help, as many fear being pitied | Cancer Research UK

According to new research published by Race for Life today, nearly half (47%) of people diagnosed with cancer said they found it hard to ask for help.
— Read on www.cancerresearchuk.org/about-us/cancer-news/press-release/2019-05-06-almost-half-of-people-diagnosed-with-cancer-find-it-hard-to-ask-for-help-as-many-fear-being-pitied

Canferatu VS The Depression Devil

One night last week Canferatu possessed my intestinal tract. The inhuman noises growled low and deep, as surely once awake, I’d look in the bathroom mirror to find I’d become vampiric, zombified, even bloodless. Only the undead, at least in movies, moan as though they’ve contracted a case of projectile diarrhea. Further proof of my dance with the devil’s own son, the sounds indicated subsequent sharply intense pain each time the idea or slightest notion of eating or drinking entered my mind. I never knew 25 feet of tubing could sound so evil.

Why the thunder from down under? Invariably, this abdominal symphony of the undead crescendoed every single time the husband became angry with me or yelled. It’s decibel rating increased to 11 on a scale of 1 – 10, somewhat like Nigel Tufnel’s guitar amp goes to 11 in “Spinal Tap.”

Some days Craig’s monster depression devil slips an itchy gray Soviet-issued wool military sweater onto his already uncomfortable skin. Its on those occasions when to simply “touch” my husband could bring on a fight to the death between Canferatu and Depression Devil. What this all means is I will not be touched by anyone more than the occasional friendly hug for days, weeks, or in worse times, months on end.

Yes, relationships can wither and possibly die without physical intimacy. Every book, every psychiatrist or psychologist, and anybody who has been married will agree that the three ingredients that keep a relationship together are friendship, trust, and sex. All three elements have to be in place although sometimes not in equal parts. It’s even more frustrating because we used to have an amazing relationship. Since his depression hit hard, he rarely talks to me about anything substantial, we don’t go out alone together, and we certainly don’t have sex but once in a while. Oh but he does yell at me. That’s so comforting…to know I’ll get yelled at…

Detrimental to my health, a lack of physical intimacy can decrease my lifespan, and is scientifically proven to increase my rate of mortality by 50%. (I don’t know if it’s 50% but seems good enough number to plug in for the purpose of this blog post.) It also bothers me that instead of reading a book on depression or cancer he’s solving his past marriage psychological fallout and is reading, “Walking on Eggshells,” a book I gave him a number of years ago. It’s an excellent resource to help people who have had any sort of relationship with these inhumane, vampiric assholes who suffer from borderline personality disorder and narcissistic personality disorder. And he leaves the book out to annoy the living shit out of me. Actually, I know it’s not purposely left around to eat away at my cellular structure, but it certainly feels that way sometimes.

Anyone can get lured into relationships with these soul suckers. As long as you’re a good source for what they want and don’t have any needs of your own, they will pretend to love you. But never call them on a lie, a trick, or their own self aggrandizement. You’ll be sorry. I was made to suffer at the ugliness of my mother’s NPD symptoms, and I suppose that’s why I’m immediately sensitive to feeling my love being yo-yo’d by my husband’s depression fallout.

Feeling nauseous and in a tremendous amount of pain this past week, my mood shall we say, just hasn’t been at it’s perky best. I’m becoming very wary of the situation as it stands. Oh, there are good days. Today wasn’t a good day since Canferatu decided to do horrible painful things to my left leg and I ran out of actual ability to stand up anymore. After our dinner guests left about 11:00 pm, my body was simply too exhausted to get out of bed at all. I slept until 9 last evening and will reset my circadian clock and sleep at a normal hour tonight; I’m feeling a little better and sometimes, less is more.

Hey, many thanks for reading and stay tuned for the next installment of my adventures with Canferatu.