Absolutely Late, Lately: Adding up the Moment(s) of Terminal Cancer

Everyone’s got the right to question the respectfulness of someone who’s perpetually late. Or do they?

I recently commented on a blog post with regards to feeling disrespected by people who don’t respect his time because they cannot arrive on time. Ignorance of individual consideration for specific situations never whispered beneath his indignation. My question back to him: perhaps there’s a few reasons that have nothing at all to do with you at all. Some people have limitations and one of those may be effecting someone very close to you either now or in your future: people with metastatic cancer.

Time Stand Still

In several blog posts, I raise points about what changes with a metastatic breast cancer diagnosis. My self inquiry never ends with the conclusions of the posts. I still question the change from (t) time=unknown to t=0 (death=0) due to the incredible number of factors associated with our mortality. The factors are further confused by the many interpersonal relationships in our lives. It’s in those intersections between people one question stands out. It’s a question that no self respecting breast cancer blogger won’t eventually ask themselves publicly.

Probably more self deprecating than self respecting, looking back on my four years here on WordPress reveals a number of mentions of this particular affectation. The most well- meaning of us with metastatic breast cancer finds themselves running behind the clock more than we’d like. I think I may have come up with a couple of reasons, not excuses, as to why we’d get sent to the principal’s office for our tardiness.

1.”It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!” (Lewis Carroll, Alices Adventures in Wonderland)

Most people enjoy the freedom to make plans. Normally everyone lives without having to think much about plans they make day to day, week to week, month to month, and year to year. With terminal cancer, one lives on less than 24 hour notice. If you have a diagnosis of MBC or another metastasized cancer, you’ve probably had plans for the the day, and for which you have had to send the dreaded text or make the embarrassing call to say, ” I’m sorry I can’t make it, ” or “I’ll be two hours late.”

Why? There’s no time to catch up with yourself, looking at the current moment wondering how I got here and wanting to drink in all of what’s surrounding me. I can’t quench a thirst that’s infinite yet has an absolute end somewhere in sight. Trying to grab ahold of everything I drop my minutes like rain in a thunderstorm and I cannot get them gathered back up around me into a reasonable explanation. Not a satisfying one to the party receiving my lame cancellation.

  1. Dear, dear! How queer everything is to-Day. And yesterday things went on just as usual.” (Ibid.)

Nothing being the same yet all things being equal, you’ll find out just how strange life can get in a split second. People disappear who you held dear and you’ll have no reason why. People who you never thought would come through in a pinch, do. And over the fullness of time new people will find a place in your life.

For me, many of those people are either ethereal online support friends, people who are older and for whom age has presented the question of death many times, people who have similar prognoses, and those who have also brushed up against death. Aside from my older friends and not knowing the lateness of my online friends, everyone else who has stayed the course with me forgives my lateness.

If the attention you have ran at a deficit prior to a cancer diagnosis, post diagnosis you’re probably in for a special treat. If you also suffer from fatigue, this seems like a dichotomy.

  1. We’ve no time to wash the things between whiles.” (Ibid.)

Theres now the phenomenal time travel that happens while I take entirely too long in the bathroom.

I spend hours on end with good reason in the brightest room in the house: the potty. I am engaged with the toilet straining against constipation, trying to stop it’s devilish alter ego – diarrhea, vomiting from chemo or any number of reasons, or for the more pleasurable bathing to relieve pain and taking time to relax and practice self care. Additionally finding better ways to wear my bizarre post chemo hair or to cover your my of hair; and, doing my makeup and drawing in missing eyebrows can take up hours of my life, however limited my time may be.

No one wants to look sick. But the less sick you look the more people doubt your level of illness. It’s a catch 22, but a fact.

  1. I forgot.

  2. I remember!

6.”Not all who wander are lost. If you don’t know where you’re going any road can take you there.” (Ibid.)

Wanting more time before it’s all over leads me down the rabbit hole into a place where I get lost. Lost inside a book, a song, a sunrise, a hug, a poem I’m writing, a memory, or a hope for something in a future that can at any moment be cut like a scene in an editors office from a films final print. I’m not lost on my path, though. It’s winding and it’s convoluted and full of time that I’ve somehow let slip by.

Measuring the importance of what I’m up to at one moment versus doing something pedantic like the dishes or the laundry. Writing my next sentence rather than sitting in the living room where my friends are and not having any reason to sit out there with four guys who love me and take me seriously although I’ve been late or a no show on many occasions to appointments with all of them.

One gets where I’m coming from because his constant pain keeps him pinned to the bed for days on end. One has attention deficit that’d knock any 5th grader off his Ritalin. One suffers the continual strain against depression. Ones seen too much to care about time as a concept but cares so much about the people in his life you can count on him in any situation with a one word text message, “help.”

  1. “The hurrier I go, the behinder I get.” (Ibid.)

I’ve come to realize it’s so simple. If those who cannot understand make a little room to fit the different senses of what time we have to expend and not take it so personally, they may even learn something. My life before cancer was so filled with the stress of time and being punctual I have to wonder if it didn’t contribute in some way to my metastatic diagnosis.

Perhaps if I slowed down a little I might have even noticed my physical changes prior to the disease falling like a domino into stage four. But I won’t look back. I’ll simply look at the moment and breathe in all the possibilities right now has to offer. And I hope your time with me was well spent if you have cancer or not. I certainly respect your time as you read and even comment on my blog. It’s your gift and I cherish it.

Dear Newly Diagnosed Breast Cancer Patient

My friend, hold onto my hand. I have you firmly in my heart and in my thoughts. Thank you for reading. Thank you for reminding me why I keep up this blog. Yet I’m one of many who choose to write for therapeutic reasons and to share my feelings so people who look for help can find it in the form of shared experiences. There’s a group of strong women out here who will make a strong network in which we can support you and hold you. Once the feeling of confusing despair dissipates a little, everything will fall into some random combination of slow, blurry, painful, lonely, disturbing, isolating, uncomfortable, weird, surreal, and a host of emotions no one but you and this club you joined can understand – a club we joined unwittingly to which none of us wanted to belong.

Stage III certainly is a mouthful to say, let alone think about all weekend. Call them if they don’t call you. Be the best self patient advocate you can. There’s no one closer to you than yourself. Keep a pen and notebook with you at all times – next to your phone, your bed, in the car, in your purse. Take notes, write down questions that come up. But try hard not to get too deep in the web of info on the internet. You’ll have a hard time getting rest. No two people have exactly the same cancer as the next. Genetic, environmental, and other causes, but god the one things that didn’t cause it was you. You’ve not done anything to bring this on…

As for the first few months you’ll feel like no one is taking your situation seriously and you’ll push for immediate action although it’s very unlikely anything much will change – either in the progression of your cancer or with the medical treatment you’re receiving. You have a nurse navigator and use the NN to help you as much as he or she are able – questions, answers, appointments, notes from doctors appointments, find out what they can do for you and take full advantage. Monday isn’t too far away, but by then I’m sure you’ll have gone on the internet to see what the dependencies and prognosis look like. If you can at all help trying to dig until you hear from up your oncologist.

A small but very awkward discussion is a second opinion – after your oncologist goes over your pathology with you and initiates a line of treatment protocol, get a second opinion, as I wish I had done earlier in my journey. I did eventually and I’ve changed oncologists twice – I like my team at Stanford a lot and they’ve gotten me through the hardest health challenges.

I know it feels like the world collapsed and there you are standing in the midst of the apocalypse that’s destroyed everything in your past and future and nothing is known, you don’t know who’ll respond of your family if friends, and you cannot understand why yesterday was okay and today is really the farthest thing from okay you can even imagine. Helpless, unwell, sad, frustrated, alone, angry, distressed, full of doubt, overwhelmed by fear, uneducated…

It took almost six weeks from my initial hospitalization and diagnosis as stage IV metastatic breast cancer, HR+ (hormone receptor positive where the cancer feeds on my hormones; more estrogen than progesterone). I will let you read elsewhere if and when you want to in the blog about my initial diagnosis and subsequent treatments, although I bet they want to start you in some form of chemotherapeutic medication while you go through tests, CT scans, PET scans, genetic profiling, and…

It’s going to feel like too much to take in at once, and it is. Get a pen and a sturdy notebook out ASAP. I’m here for you and I can give you as much or as little of my personal experience to guide you. Listen to some podcasts to keep your mind occupied and stay in the know – personal ones like Thanks Cancer – there’s a link on my site – a podcast that two friends wish they’d had when they were going through each of their separate cancer journey. The stuff that’s about to come up in your life will make it seem like a dream. There’s Karin Seiger’s blog and podcasts. She’s an excellent resource of both calm and strength and is a licensed therapist with two breast cancer diagnoses of her own so she knows what it truly feels like, just as Mimi and Leanna the two aforementioned cancer friends.

But you’ll be okay no matter what the outcome. You will find a way to peace with your diagnosis eventually, could be sooner or later but you will. You’ll find parts of yourself you never knew existed, and you’ll grow emotionally, spiritually, and intellectually to heights you never thought you could. And no path is wrong, no steps incorrect because it’s your path and your feet and no one can walk in your shoes. Some women immerse themselves in family, kids, etc., some in exercise and nutrition, some in writing and reading, some in meditative practices, eastern medicine, yoga, Qigong, peer groups at a local cancer center, and a you’ll find your balance using a combination of some, everything, or none at all. Invariably however, you’ll be met with open arms wherever you go.

I read my husband your note with tears and said to him – this is the reason I keep my blog going. I need to focus on writing to her what I wish someone had written to me after my diagnosis. So this is the best that worked for my journey so far. And without going down too many confusing roads, I hope to have given you an asynchronous hug from here in California to your time zone – and I will not let you go it alone if I can help you at all, I will. Stay in touch, even if it’s just a once in a while single sentence because more pressure you don’t need. But, let me know how you are doing. Ask me about things you need a simple pointer towards and if I have answers I will give them, experience I will share it openly, referrals if I know one, and love unconditionally.

I’m not the only one out here. We all love each other in a sister and brotherhood of strength and support. Use Twitter and Facebook. Feel free to check my follows and followers on Twitter especially and there are two online groups – whatsnext.org and inspire.org – I have a listing of some links I’ve used in the blog, too.

Sorry for the delayed response; having not had a good health week culminating in todays fun stage 4 spectacular. And finally, keep your humor because it’ll keep you going in those very dark moments. You’ll have some now and then but laughter’s a medicine that no oncologist prescribes and you can get it over the counter for free. With cancer neither of those adjectives pervade the situation unless you seek them out and find them yourself. But there’s sunshine after the tears subside and remember that even though daylight hides the stars, the starlight is just on this side of night ready to shine even if you have to imagine they’re there.

❤️❤️❤️❤️❤️❤️❤️

Ilene

This was a letter to a reader of my blog, who’s also a virtual friend, in response to her personal email to me. I wish someone had written this letter to me when I was diagnosed in 2015. I felt alone, afraid, and as though things were happening in a time warp. I’d love to have your comments on what you’d add to the letter or what you’d like to have heard when you were first diagnosed.

Death and the Paradox of Happiness

Recently reblogged as a follow on to Karin Sieger’s (karinsieger.com) moving and deeply honest discussion to losing a dear friend to metastatic breast cancer, was my post on hope even in times of grieving. Integrative Hope, a post I wrote back in February, touched on losing my best friend to AIDS at the age of 37 and to my father’s death as a result of a large mitochondrial brain tumor in 2013. When faced with the issues surrounding my own terminal illness and my attitude towards death, I noticed that even on such deep and weighty subjects my philosophy emotionally matured. Perhaps the processing of my evolving attitude towards death and dying came to me more quickly having been diagnosed with a currently incurable disease.

I believe this is in no small part how honest I’ve become inwardly with myself in facing the ultimate of uncertainties, what happens when we die?

I’ve had the honor of being by the side of my best friend and my father and my perspectives on death and dying were strengthened by these two life altering experiences. My mourning wasn’t so much a sad experience as it was a humbling one. Oh, I did cry for the loss of each of them in my life and occasionally still do. But I also laugh, smile, and feel lucky to have had them in my life for the time they were here. While thinking of them now during specific times of the year, hearing songs we shared a love for, or that especially reminds me of either of them, the scents and tastes of favorite foods or restaurants, or an experience in places we’ve visited together. Immediately, dear memories bring them both rushing back to my side as though they’d never died. They’re integrated into my soul in so many ways.

Time also heals and bends our perspectives. The mind protects itself by recalling happy experiences over sad ones. I think of my divorce to my first husband. It’s not the fights I recall but the great times we had, the places we traveled, and the wonderful ways in which he enriched my life. Divorce is a kind of death, too. As for those who I can no longer contact because I’ve lost them to diseases, my life in a sense extends their own, although neither is still alive. I’m grateful to have all of them integrated as part of what makes me, ‘me.’ I only hope when I die that there will be as positive an experience for the people I love in this life.

Unlike divorce, where we know what happens when a marriage dies, we just don’t know what happens when we die; the great mystery I believe humanizes all of us and is the only thing on which everyone can universally agree. No one can buy this knowledge either: what happens to all that energy we create while we are alive after our physical bodies have ceased living?

The paradox of happiness

I do believe this philosophical issue makes me more resilient in my own terminal illness and helps me survive with my disease: I’m not carrying any fear of dying. I focus instead on living. For instance, I’ve found peace and happiness where we recently moved and these feelings drive me to want to stay alive. The photo attached to this post is the view in our new home and where I will write my blogs and start writing my book. I want to live longer to see what a true state of happiness feels like. It frightens me to think it may change my philosophy of the dying process.

Therein lies the paradox. I’m grappling with this existential question now and some days it makes me quite angry and sad, which to me is counter intuitive. But that’s okay. It’s all a learning process. I suppose that’s one of the many beliefs as to why we are alive in the first place.

Well must attend to the rolling blackout here in California where the electric utility has determined its bankruptcy allows them to endanger people who need electricity to run medical devices or have air filters or heat on. Fortunately once we move to our new house we will have a generator that switches on and we are converting to solar in the next 3-6 months so as not to rely on such a horrible service. In fact it’s so costly some families have lost their homes or even their children to social services as a result of not being financially able to pay for their over expensive power bills. You legally must have power on to live inside. But bills can exceed $2000 a month and not for mansions, either.

Such a morbidly sad and strange time to live in. Yet all the same it’s still wondrous to wake up every morning with the opportunity to be grateful for another day.

Even if the powers gone out.

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