Cancer and The Diffusion of Time

It’s improbable, but not impossible, that I’ll have enough time post diagnosis to continue my PhD in quantum mechanics. Or, even begin one for that matter. My academic career ended years ago, after embarking on a failed attempt at finding the funds to eat and live while pursuing a masters degree. I gave up my dream of becoming a full time writer who traveled extensively, to actually make a living wage in marketing during the rise of the tech economic hot air balloon.

Each day, the alarm did its best to beat me awake at 4:30 am and after downing my cup o’ 5 am Cuban coffee (cortadito) and hour at the gym, I ran my young self a quick shower and took a quick drive to the office. 15 minutes took me over the causeway connecting Miami Beach to the mainland to downtown and down Brickell Avenue. And I always arrived at my desk early.

D-Day and Chronic Lateness Syndrome
Since diagnosis day (D-Day), I’m persistently, consistently late. I find myself getting distracted by just about everything and even simple tasks seem to take me longer since D-Day. However, it’s something I’ve never quite gotten used regardless of how I try to trick myself. The use of anti-dilatory tactics such as setting clocks and watches 20 minutes fast do not work particularly well, if only to confuse everyone in my house.

Since D-Day, I’ve absorbed many lectures and books on quantum physics. Cancer artificially inflates the time space continuum, and my greatest discovery yet, although I still await word from the Nobel Prize committee (who also are chronically tardy), is the following equation:
time + cancer = tardiness
Or
T + CN = D (where D is the diffusion of time)

Needless to say insomnia keeps me from getting to sleep until 4:30 am, not getting up to go to the gym before work as was once the daily habit. Due to an early and forced retirement, I look for ways to redefine my purpose in life. I’m a writer, so I’ve been able to circle back on an early career goal and I appreciate that immensely although it’s not ever going to earn a living. I’d be incessantly pissing off editors for my inability to meet deadlines. So my blog and notebooks replace professional gigs, although one day I do hope to publish a chapbook of poetry. Before I leave this conscious life that’s one goal I hope I’m not late to achieve.

A Very Important Date
Yet I’ve forgiven myself for my lack of timely arrivals and missed deadlines. Sometimes, poor health or overwhelming side effects, impede any hope st beating the clock. Mornings set the pace simply to get out of my own way and escape the house before sunset, or to even ready myself for the occasional visitor. Any of the first three tasks of the morning, after I ascertain how I feel physically and emotionally when I get up, effect how to measure out the minutes of elasticity in my schedule. Rolling out of bed, first shaking off the painful pins and needles of neuropathy, next reading and/ or writing while sitting on the porcelain throne combating turgid bowels and numb ass cheeks, while the hat trick amidst silent suffering, fumbling, squeezing and allowing my medications to take effect, thirdly, deciding whether or not shower or take a bath. Depending on my overall health, pain, and fatigue, I obsequiously send texts and make calls, if it’s necessary, to rearrange my schedule for later that day or another day altogether.

To cope with losing self worth and the care of others as I look less and less like a good friend and more and more like a Prima Dona, I use different stratagem. Aside from pure honesty, which I cannot imagine doesn’t sound like pure bullshit to some people, I pre-empt disappointing others with a written warning before accepting an invitation: “ATTENTION: chronic illness causes chronic lateness. Plans may change without any written warning or consent. Your mileage may vary”

I’m generally about 15-30 minutes late, even to see doctors – my palliative oncologist in addition to my oncologist. Although my palliative oncologist helps with most of my symptom management including the psychological impact of having an incurable disease knocking on my door day after day, she cannot help my chronic tardiness. Metastatic cancer is neither easy nor fun, and most people don’t believe I am as sick as I am. I refuse to let it dampen my optimism. Or, more truthfully, I try not to allow other’s opinions to bring me down. False Stoicism isn’t my strong suit and I tend to wear my emotions on my sleeve.

Makeup to Make Up
Yet even if I’m home all day I still get up and get dressed and put on some makeup. Mascara and a curling iron become my personal therapeutic counselors. I really couldn’t care less if people say I don’t look like I have cancer – or if they don’t even believe I have stage 4 because I still have most of my hair. It’s my internal state that makes the most difference to my overall wellbeing.

Motivation and timeliness don’t always go hand in hand. I’m relatively optimistic and motivated by good intentions every day. It’s a new day, there’s light and life and love around me and I’ve achieved consciousness after awakening from my unconscious state of sleep for the gift of another day. For that I celebrate my life and I get dressed as nicely as I can. As ridiculous as it may sound, this act seems to help my ability to find positive motivation. Perhaps I may overdress and take too long in doing so; otherwise I may not back the Mini out of the garage or dare think about walking out of the front door. Those kinds of days cause a cascade of cancellations and schedule rearrangements. It would feel awful to the people who got bumped to throw away any part of their day and some of their well-meaning hope with a bad bet that they won’t sit idly waiting on my appearance at some future point. I feel really awful when I think I’ve wasted someone’s time, knowing to the cellular level how precious and few are every moment to the living.

Writing It Down
Sometimes just looking back at the week or month or year gives me hope and also perspective that I would have forgotten had I not kept up with writing. I recall numerous times with good friends, cancer peer groups, and fundraising events when I arrived on time. To the delight of others let me add, and to my humble embarrassment.

Writing too, chases the hours like a dog after a mechanical rabbit on a race track. Once the shoot opens I sprint through an idea for an essay or a poem until it’s complete. Usually this happens late at night or early in the morning. And with that, Simon my cat has come to let me know he’s finished puking on my new rug, and my friend is driving from Reno as I finish up editing this post. My husband still in the throes of chronic depression will not get out of bed until I do.

I must wrap up this lengthy discussion by saying this: if I’m late to my own funeral I won’t be a bit surprised, because cancer also succumbs to my late arrival. I’ve already beaten the artificial deadline of my initial diagnosis. In the meantime I’ll keep smiling, getting dressed to celebrate each new day, writing, and hoping you don’t mind the days when I just can’t seem to make it.

Ilene

Female. East coast transplant living in the Bay Area of California. Living with Stage IV breast cancer. Married to the coolest guy in the universe who occasionally suffers from serious depression. Love my stepsons, although I never thought I'd have that thankless job - ever! And my best friend Simon is also my cat. How I have survived with stage IV: treatments including chemo and surgery; palliative oncology; tenacity; a dark sense of humor; support groups; and my newly reinvented career as a vintage and antiques maven. Some days I miss the old me who led a well respected and well paid life as a business strategist in high tech. So much for that. I blog to simply share my experiences and my poetic approach with others who have cancer of any kind or with their care givers and those who love them. If one person at the very least finds a little commonality or a friend out in the ether tor a smile, a common nod about this experience, or even a link to assistance, then I have accomplished a small but extraordinarily meaningful goal. Go team.

12 thoughts on “Cancer and The Diffusion of Time

  1. Hi Ilene, this article is of particular interest to me, because I’ve ALWAYS been late throughout my life – and yet, more recently, I’m learning to arrive at appointments early! For me, lateness has always been a combination of having no concept of time, and a fear of wasting time – which is why I never used to like using public transport. Now I’m no longer allowed to drive, due to having had brain mets, I have to rely on my husband or public transport – more recently my husband. Either way, I am no longer in control of my timing – and yet I seem to be timing things better. How odd!

    1. You know I think depending on others to get you to where you need to go is great impetus for timeliness. If it’s another person waiting to take us to appointments then it’s a great driver (no pun intended) to get going. When other factors control timing, I believe the tendency is to become mindful of the clock. This is an awesome point and thank you – perhaps getting a ride from a friend or my husband would put a 🔥 under my butt to get going! Otherwise my time seems to get sucked into a vortex of just not feeling like there’s much to rush for and therefore not much to drive my need for speed.

  2. Hello Ilene,

    I am sending you another hand to hold, and shoulder to lean on, and an ear when needed.
    I too have cancer but not of the breast, mine is lung cancer. This is my fourth time with cancer. I have only half of my colon, no Thyroid, and no upper chamber of my right lung. Now I have cancer in my lower chamber of my right lung. I have had Radiation, and Chemo, I am now on Immunal Theropy, a new form of Chemo. I can safely say I know what you are dealing with. I have beat cancer three times and I WILL beat it again. I have been fighting this battle since I was 37, I am now 75. I have published a book, “The Italian Thing” it can be seen on Amazon.com, I have some stories published and even a poem. You can win your battle. You know how powerful the mind is, and if you refuse to let cancer beat you down you WILL win. Yes, we have many days to battle, but we can do it, You are strong, I am here if you need me. You can email me at salpa58@hotmail.com. I will always answer you, I will also keep you in my daily prayers. Take advantage of the good days. Think of yourself as well, not sick. It’s just a bump in the road. You can do this along with me and many others. Bless you and I hope to visit you again. Blessing to you Ilene. xo

  3. Ilene, I came across your blog due to a reblog, and I am happy to meet you. Thus far, I’ve only read this post, but I’ll go back and catch up. Words cannot express the good you did for me today. You see, yesterday, I was diagnosed with aggressive, malignant breast cancer. I was given a “Pathology Final Diagnosis” that the doctor in the Woman’s Center would not explain the acronyms and “scores.” He said for me to ask the oncologist. Only, I won’t know who that is until after the “nurse navigator” contacts me, which may or may not be Monday.

    While I’m feeling sensations in my body that recently introduced themselves, and am still recovering from the pain of the biopsy, I visited the Susan G. Komen website and looked up the acronyms and scores. Now, I understand what SBR 8-9 means, and I’m ready to accept if I’m in Stage III.

    Then I wonder why is it that I seem to be the only person who wants to get the ball rolling rather than waiting for Monday to come, and then what? Another Monday?

    Yes — cancer and the diffusion of time.

    The best to you. Here’s reaching out my hand so you can take hold of it.

    1. Xena, warrior princess, 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, well, you. 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 a lot and it is. Get that pen and 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.

      But you’ll be fine no matter what the outcome. You’ll find parts of yourself you never knew you had inside, and you’ll grow emotionally, spiritually, and intellectually to heights you never knew. And no road is wrong – some 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 (we one in the South Bay Bay Area Cancer a CAREpoint) and 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 I had someone write to me. So this is my best without going down too many confusing places and I hope to have given you an asynchronous hug and I’m not letting go. Let me know how you are, what things you need a pointer to 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 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 (keep your humor because it’ll keep you going in those very dark moments) and my hubby interrupts me every time I restart writing with some inanity to look magnanimously as if he’s taking are of me – snicker. )

      ❤️❤️❤️❤️❤️❤️❤️
      Ilene

      1. Ilene, (hands firmly holding on to each other), words cannot express how grateful I am for your response. In the midst of your situation, you have shown compassion, love, and concern for me and others. Your heart is fantastic!

        I live in a small town in Illinois where, being originally from Chicago, I consider it rural. The moment I get comfortable with my primary care physician, they leave town as many other medical professionals.

        The Women’s Center gave me a book. Other than that, the most reading I’ve done about breast cancer has been associated with soy. I happened upon that subject by trying to narrow down what was causing me an allergic reaction.

        Of course, we can’t help but wonder what’s going on inside our bodies and there’s a sense of feeling helpless because we have to wait on appointments, medical professionals, test results and follow-up on test results. All weekend, I’ve felt helpless.

        By the way, I began keeping a notebook of contacts and situations when I was first given the run-a-round just to get a mammogram scheduled. I wrote a letter to the hospital’s Director of Risk Management hoping they will organize their system better so no one else has to go through that experience.

        “Thank you” are not sufficient words to express how grateful I am for you. (((((Hugs)))))

  4. Ilene – So happy to see you are able to continue to write. Great post! Thank you for sharing your cancer journey.

    Warm regards,
    -Liesl

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