by Carolyn Thomas 
Heart Sisters (on Blue Sky)
“We don’t need bigger lives – we need to feel more present in the ones we already have.”
That’s how Los Angeles physician and author Dr. Alona Pulde opened her column last month in Psychology Today.
I could immediately relate while reading these words:
“We move through our routines. We do what’s expected. We check the boxes. We keep going. But over time, something inside starts to ache. It’s faint at first. Easy to ignore. We call it ‘normal’.
“We often tell ourselves we’re just tired”, Dr. Pulde adds. “Just busy. Just overwhelmed. But beneath the surface, it doesn’t announce itself. It comes quietly, in the form of numbness.”
I’ve learned to embrace that numbness, my initial reaction to the new diagnosis I hadn’t seen coming in April. My regular Heart Sisters readers will already know that I’ve been diagnosed with breast cancer. Apparently, living 17 years with heart disease wasn’t quite enough on my plate.
Numbness may sound dull and boring, but at the time, it sure beat the frantic feeling of drowning in this new diagnosis. I recall, for example, weeping on the phone to a friend one morning early on, while wailing: “I don’t think I can DO this!”
Numbness, in fact, has been my friend since the day I heard that cancer diagnosis, because I wanted and needed to stop 24/7 fretting about having cancer. Period. I knew I’d get around to acceptance and reality some day – but not today.
As Dr. Pulde observed, I was just doing what was expected of me. I was checking boxes (especially while deciphering the complicated drug spreadsheets I needed to follow at home in between Chemotherapy Days). These meds are as important as the I.V. chemotherapy drugs, because they’re prescribed to protect me from suffering the dreadful side effects of that chemo. And every pill I take at home needs to be tracked and accurately recorded on that spreadsheet.
This does not feel “normal” to me.
Take chemo brain fog for example: (Please! Take it!)
This is a term used to describe memory and/or thinking problems caused by a number of cancer treatments. Mayo Clinic describes this condition accurately::
- trouble recalling what you’ve said to others
- trouble recalling what’s happened recently
- trouble finding the right words
- trouble doing more than one thing at a time
- mental fog
- short attention span
- taking longer than usual to do routine tasks
For example, chemo brain fog means obsessively checking and re-checking that drug spreadsheet on my kitchen counter. It is utterly exhausting.
It’s extremely stressful to keep asking crazy-making questions to myself, like: “Did I take that pill already? Why isn’t that box ticked off? Did I forget the pill, or did I just forget to tick the box? What if I forgot the pill? Should I take another one?”
That’s an endless conversation with myself I’ve had every day since my treatment plan began.
I know that my brain is not functioning as if any of this is normal at all. Because nothing around here feels normal.
As Dr. Pulde explains:
“Psychologically, emotional numbness is often a natural response to chronic stress or disconnection. It’s the nervous system’s way of saying, ‘This is too much. Let’s shut it down.’ ”
Yet she also offers this cautionary warning:
“Numbness is not peace. And comfort isn’t always the same as safety.”
True safety, she adds, isn’t the absence of feeling – it’s the capacity to remain present with our experience, whatever it is:
“Joy or sorrow. Feeling still or feeling ill. Safety means knowing we can face what arises without being undone by it. And that kind of safety doesn’t come from control or perfection. It comes from trust in our own resilience.”
And that’s my problem right there. I don’t even know what I can trust or not. If, for example, I can’t trust my own capacity to write down when or even if I take my anti-nausea pills as directed, how does that make me “safe”?
Neither do I feel confident in my ability to “face what arises without being undone by it.” In my short stint so far as a cancer patient, I’ve already had a number of interactions, conversations and phonecalls in which I did feel completely undone, and where I simply didn’t know how to face whatever gut punch was heading my way – my most recent undone moment just three days ago in the hospital.
I do, however, have some hope.
Not a full load of hope at the moment, I must say. But I’ve already survived other medical crises that many do not (like that misdiagnosed ‘widow-maker‘ heart attack in 2008). I can do hard things, but it’s exhausting. I’ve had some bad news so far, and I’ve had quite wonderful news. Good news feels better.
But when I was first diagnosed with a malignant form of cancer called invasive ductal carcinoma, feeling numb was all I knew. It may have been a type of temporary denial that in fact can serve a useful purpose, giving our minds the opportunity to unconsciously absorb reality at a gentle pace that won’t send us into a psychological tailspin.
Yet people who face an overwhelming diagnosis often feel pressured to swiftly adjust to what now looks like their “new normal”.
Here’s how one of my Heart Sisters blog readers described that “normal’:
”A lot of people at my Cardiac Rehabilitation classes have talked about this NEW NORMAL that I’m supposed to get used to from now on. I hate that term! I want my OLD NORMAL back again. I don’t want to have to adapt and adjust to what seems like a stranger’s life, not my own anymore. To give in to this NEW NORMAL would feel like just giving up hope.
“I am a competent, successful, active, outgoing business owner, but since my double bypass open heart surgery, I feel weak, anxious, weepy and frightened at every little twinge or pain. THIS is what I’m supposed to get used to? No way!”
When I was first diagnosed with heart disease in 2008, I too felt like I was expected to get used to living somebody else’s life from now on. It’s almost as if I went to bed as one kind of person, but woke up the next morning as an entirely different person (the kind of healthy person who has never, ever seen a cardiologist – but now apparently needs one!)
I’m with Dr. Pulde when she says: “We don’t need bigger lives – we need to feel more present in the ones we already have.”
Even during this overwhelmingly surreal time, a part of me does carry that shred of hope that the day will come (soon please!?) when I can respond by simply staying more present, no matter what.
Cat image: Guvo59 at Pixabay
♥
NOTES FROM CAROLYN:
1. You can read about my breast cancer treatment updates here.
2. You can find my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). Ask for it at your local library or bookshop. Please support your favourite independent neighbourhood booksellers, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
Hi Carolyn,
I forgot to mention that I use pill minders, those little weekly pill contains you can get from any pharmacy. I use one for breakfast, one for dinner, one for bedtime and one for my once a week bone pill for me and one for breakfast, one for lunch and bedtime for my husband. I fill them up once a week. That way I know if I’ve taken a pill or not. I do this with antibiotics as well as I’ve had several UTIs since January, on top of everything else!
Linda
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Hi Carolyn,
I’ve been meaning to reply to many of your posts since April; but, my life has been crazy, medically, emotionally and physically, some good grandchildren time; but, a lot of “ugly”: a bout of debilitating vertigo that landed me in the hospital for 5 days in mid April, followed by significant “brain fog”, followed by surgery in mid-June to remove a huge hematoma in my breast that I’d had for almost 20 months following breast cancer surgery. (Originally measured at 6.8×6.4×4.6 cm, my Toronto Breast Specialist Surgeon estimated it to be 8x8x10cm, and I’m small breasted! He’d never see one this big!)
I actually sent you 3 emails, but you were in the midst of your diagnosis, I figured you didn’t have the energy to reply and I didn’t have the energy to follow up until now.
I know what you mean by “brain fog”! That is a residual effect of vertigo. I could have written the description that is on the internet. Although many of the symptoms are similar to those of “chemo brain”, mine also included other symptoms of ADHD, poor memory, difficulty focusing, constantly having your thoughts derailed and then forgetting where that choo choo train left the line! On the ADHD scale of 0 – 10, I’m normally about a 3; but, post vertigo, I was a 10 our of 10! It was driving me crazy!
I understand what you mean about the “New Normal”. I had heart bypass surgery in June 2010 and a pacemaker in 2020, which was moved 18 months later as it was butting up against my arm.
My husband was diagnosed with melanoma in the lymph node of his arm pit in Dec. 2020. He had a spot removed in 2019 which was said to be shallow, early stage, clear margins and no further treatment recommended. This time he was on immunotherapy for a year, Mar. 2021 – Mar. 2022. We got COVID at the beginning of July 2022. By mid-Aug. he started not feeling well. His TSH (thyroid) number went from 4.3 (just above normal) to 42 in 3 weeks. It took 6 months to get that in line; but, instead of gaining weight, which is normal for one with hypothyroidism, he was losing weight. Despite 4-5 boosts a day on top of what he could ingest, he was losing weight. We thought he had long COVID. It took a year to diagnose him with a low functioning adrenal gland by which time he was down to 115 pounds from his normal 153, was so weak we took him to the hospital and the hospitalist, along with our RN daughter, found a study out of the UK connecting the immunotherapy drug he’d been on with low adrenal function without the involvement of the pituitary gland. His cortisol number was 15 when it should have been over 150! He was dying of malnutrition. We had him on the waiting list for a nursing home and had PSWs coming in to help bathe, dress and shave him! He started on hydrocortisone and it’s been like a “miracle drug”! He started that in Aug. 2023 and then in Sept. our basement flooded when the intake pipe to our washing machine burst and the water was squirting up to the ceiling.
Then I was diagnosed with breast cancer (invasive DC). I had a lumpectomy and sentinel node dissection on Oct. 31, 2023. Only miniscule cells were detected in one of the 3 nodes they removed; so, I opted not to have chemo; but, had radiation. Ten days after my surgery, I developed a horrendous rash that was 4 inches wide and extended from my breast to my waist and was starting to move around the rest of my body. I have sensitive skin and am allergic to adhesive. We think my skin reacted to the cleaning fluid that was used and went crazy! I realized that my breast never became soft after surgery and by Mar. 2024 was very swollen. I had it drained on 6 separate occasions and initially was told by my local surgeon that it would resolve. Well, it didn’t and her story kept changing; so, when I was in the hospital with vertigo I had time to think and decided that “I was so done with this huge swelling, sought out a Breast Cancer Specialist Surgeon at Princess Margaret and the rest of the story I’ve told.
During most of those awful 5 years, I was surviving by pushing myself out of the door to go for a walk, having a few life-lines in place: my faith, my family, especially my grandchildren, my choir, my virtual “coffee hour” friends, a lovely retired minister and of course Heart Sisters.
My day would be focused around my after-lunch two hour nap. It was “if I can just get through the morning by walking and doing something to distract me”, I’ll make it to naptime, then coffee hour when I’d read the newspaper, then some little task, followed by dinner, working on a jigsaw puzzle, followed by a TV show followed by bed. I wasn’t sleeping well and would lay-in in the morning as I couldn’t face getting out of bed! We went on our first holiday since COVID March 14 – 31, arriving home to the devastation of an ice storm. Despite that, I felt that I had finally emerged from my depression and could see the light at the end of the tunnel. Unfortunately, that light turned out to be a freight train called Vertigo!
Now, I’m 6 weeks past my surgery to remove my hematoma. My surgeon sewed the upper and lower sides of the cavity together; so, it won’t fill up again. Those sutures are in for 3 months before they dissolve. So, now I feel like I’ve emerged from another black tunnel and am basking in the bright light of a lovely summer’s day.
So, the “New Normal”, isn’t the end of the story. Even though you won’t necessarily ever be back to your “Old Normal”, there are stages of the “New Normal”: recovering from surgery, getting treatment, dealing with the side effects of treatment (the hormone suppressing drug I’m on can cause depression and bone loss!), recovering from treatments, building up your strength and resuming your former activities, one at a time. Being distracted by grandchildren has helped my husband and I through all the stages of this and continue to bring great joy to us.
I wish you all the best as you move through all these stages. I found a “listening ear” in the Cancer Connection blog, which I highly recommend. I taught communication skills in a high school tutoring credit, and what is described as “Co-Listening” I taught as “Reflective listening”, with the exception that with the tutors, the tutors were listening to the problems of their students; but, not the other way around, which is a lovely addition!
Sincerely,
Linda
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Hello Linda – Oh, WOW! Those were five “awful years” indeed! How on earth did you and your husband cope during that avalanche of health crises? I’m so sorry you had to endure all those diagnoses and procedures and surgeries (and missed diagnoses as in your husband’s adrenal gland issue). You have officially reached your lifetime quota of dreadful medical crises and I hope the years ahead will include much more “basking in the bright light of a lovely summer’s day.” You and your family deserve that!
READERS: You can read Linda’s remarkable story of convincing her surgeon to replace a too-big pacemaker 18 months after it was implanted.
I heartily agree that grandchildren are absolutely the best therapy! Over the past two days, for example, my lovely daughter-in-law Paula has taken me and our 4-year old Zack for long seaside scenic drives. Even just sitting in the back seat of the car, laughing and reading his Curious George books together was like a tonic. One of my current chemotherapy side effects, unfortunately, is called Hand-Foot Syndrome (painful peeling blisters on the soles of my feet which make standing and walking difficult). But for those few ‘driving holiday’ hours, I could just relax and focus on my family! I will look into the Cancer Connection site – thanks for that recommendation. I need all the support I can find just coping with these horrid chemotherapy side effects!
Linda, I wish you all the best too. It’s amazing to me what the human spirit can survive – and when we have family support and other important resources, it makes all the difference.
Take care. . .❤️
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Something called CO LISTENING …..? Used to work for me…will try again…..
THANK YOU for bringing this up Carolyn….I too am experiencing something similar in that a lot of ‘stress’ currently seems to activate old bits of me still ‘unhealed’…..I am seeing a deeper layer this time as I go through several difficult ‘endings’ in my own life… the latest of which is our dear little dog Ellie – age 14 is now in heaven….she was in so much pain for reasons not clear that it was obvious to help her and the vet agreed thank goodness.
What my husband and I are noticing is that this latest series of ‘challenges’ is uncovering a deeper protective at the time in the past way of now Having to be resilient has some kind of vested interest in keeping anger, sorry feelingness, bitterness, hard done-by ness simply BECAUSE it arouses some ancient FIGHT FLIGHT mechanism that worked for thousands and thousands of human years in the past….
MY HEART does not resonate with fighting or fleeing or freezing anymore —– sooo what works and is working although NEW is for me to acknowledge HOW VULNERABLE I FEEL and ask OTHERS to hear me out and hold the space for ME to hear myself and my HEART be witnessed in the ‘horrors/sadness/grief/endings’apparent in my body’s and my feelings reaction.
CO-LISTENING is a technique invented by a woman named DINA GLOUBERMAN in New York who founded SKYROS HOLIDAYS in Greece. You can download the process from her current website. THIS PROCESS REALLY HEALS and so I am going to now engage a few friends and ask them to help me move through this by following the technique.
One friend from London that I met in 2001 does this with me over the years but it is time to ask others to help me in this way.
Basically — it is a twenty minute process….for the first five minutes one of you speaks about what she feels and is experiencing in the NOW…then the other person says what she HEARD you say and that is IT! Then you switch and the other person speaks for five minutes about what she is feeling and going through in ‘I’ statements and you then do the same.
NO ADVICE is given === no stories about solutions — JUST really being present with ourselves as we speak from our hears and then witnessed by the other person who says back what she HEARD.
Marvin Gaye – the soul singer from the 1960s – song: I NEED A WITNESS says it all really.
As a result of your sharing Carolyn — I am now going to email my friend in London and ask to set a time and then see if I can ask a few friends to learn the process so we can share with each other — as life lives within us and we face scary as well as lovely life experiences.
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Hello Isabella – first of all, my condolences on the sad loss of your Ellie. You must miss her terribly.
Thanks for introducing me to the work of Dina Glouberman and co-listening. So simple, yet so profound. What a gift to be truly seen and heard like that.
Speaking of listening, this past week I had a port implanted in my chest (for chemotherapy access to replace I.V.s every 3 weeks) – a long day in the hospital, 8:30-3pm with nothing but time to eavesdrop on the nurse- and doctor-conversations beyond my curtained cubicle. Basically: non-stop griping – about their paystubs, their bosses, their work schedules. But there seemed to be no LISTENING to those gripes. The minute one person stopped griping, another would jump in with his/her own list of grievances. It was exhausting just to overhear all that – not to mention unprofessional to be openly gossiping where all nearby couldn’t help but hear too.
I love your idea to ask your London friend to share your co-listening future.
(PS: I knew you meant “NOW”, not NOT so I fixed those…) 🙂
Take care. . . ❤️
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