Dear Me,

Ilene, may you find it in your heart to forgive me. It’s harder to forget than forgive for you, yet you may be better off, if you cannot forgive, to forget. Some wounds become scars. Do your best to forget the scars, some of which only you can see. They’re not from your cancer but the way your life changes because of your cancer.

The people you love will fall away, but they don’t know how to see you anymore. They feel guilty talking about their problems with you. Its guilt that stems from what they realize is pettiness. But you can’t hang onto those people no matter how hard you try. Letting go gives you a more solid foundation on which to heal. It’s hard enough with negativity and trying to explain your situation. Some will believe it’s based on something you did or did not do. Neither is true and there’s absolutely no point in wasting time.

Time is the commodity you have so little of, but don’t worry. You’ll have exactly as much as you need. Don’t waste it waiting for that is the one thing you’ll regret.

It’s not your fault -ironically – you’ll forget a lot in five years. For instance I’m so late in writing this letter to you because I’ve forgotten so many times. I meant to sit and write it 100 times but I forgot or time slipped away from me. And you’re the most important person in my life and you know me better than anyone, don’t you? Please forgive me for not writing this long ago. I’m still as distracted as ever maybe more so. Don’t worry the cancer’s not gotten to your brain yet. We are doing pretty well all things being equal given five hospital stays, five types of chemo and five different oncologists. You have a lot to look forward to.

But there’s a few things I want to tell you. It’s been about five years since the diagnosis came down on you like a boulder even Sisyphus hadn’t the strength to keep pushing up that hill. Do you recall Albert Camus’ version of the myth of Sisyphus? Ridiculously, because he has accepted his fate, he’s happy. His punishment is only horrible if hope of a better life enters his thinking. If he continues to focus on his absurd task then he cannot fear the punishment, extreme given its grounded in of his lack of trust in his widow left behind to carry out his wishes upon his death, but he’s dead. No longer in charge of what happens to anyone whos alive. Camus grinds his pencil point to a sharp by alluding to Oedipus and that, although both situations are absurdly tragic, both Sisyphus and Oedipus are ultimately happy. But how can a boy kill his father, marry his mother and live with all that guilt?

They both “conclude that all is well.” And all is well. You’ll use this to mediate countless times in the coming years but you’ll never leave hope out of your thoughts. I’m doing well so all can’t be that bad.

The moment you give up, the stone will roll back and crush you. Don’t give up hope because all is well. I never break promises to you. I promise this is true.

You’ll keep dreaming of bigger better things. Throw away your lists of things to do before you die. You can hardly count on making a phone call these days why then put a constant state of anxiety upon yourself for what you’re not getting don’t – when you’re achieving so much? I say this to you with all your expectations boiled it down to ONE SINGLE thing… the northern lights. Don’t forget that’s the one thing you’ve dreamed of your whole life. Find a way to go!

If you get to Scotland and Britain, awesome. You must try to hug those amazing people who have loved and supported you from afar.

However it would be great if your friends and one or two family members who physically can – would find a plane ticket to come out and see you??

There isn’t a lot left except loving more fully and learning to accept love better and know when to let go. There are a couple of places I’ve not been yet and maybe learn to fly or horseback ride. But I’ve not seen these as regrets but just life and living and finding the budget. I realized tonight in fact that if not another thing I wanted to do happened, if not one single trip to see and photograph the Aurora Borealis never came to be…my life would be a success.

This life is all you get and not having died as an infant, toddler, teen, or any other age is certainly an accomplishment as noted by our current global health crisis.
I loved with all my heart.
That’s the life you wanted.

I continue to live with love as the guide for my actions. You know by now all that’s mattered until this point is love and by shining your light you’ll attract amazing people to help support you through the most difficult time you’ll ever know. Leading the emotional rollercoaster is uncertainty, and coming in at a nose to nose tie is fear.
I was fortunate to meet people and travel and learn and become a success in my career and break a lot of glass so other women wouldn’t understand the shards that stay under your skin, I took the bullet. Many women around my age +/- 20 years did too.
In general I’m happy.
But most of all…there was and is LOVE. Einstein even was quoted as saying e=LOVE. A joke, but you get my sense of humor.

He and other scientists, ancient and later in the end said love mattered most.

“Tell your son to stop trying to fill your head with science – for to fill your heart with love is enough.” Richard Feynman

“One word
Frees us of all the weight and pain of life:
That word is love.” Sophocles

I suppose that’s about it for now. More later but remember one thing, I love you.

Love, You

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.