MAMMA MIA!

I have now spent over a year living with and caring for my slowly crumbling, now 99 year old mother. During a global pandemic. A bittersweet and challenging honour to say the least.

This COVID Pandemic has exhausted me so I am turning my back on it. I could be journalling about all the crazy/funny shit that I have experienced or seen. But I shall let all the meme-makers cover it.

I have spent more than a year trying to be good. It sucked.

I hate trying to be good. If you have read my posts thus far, you know how my DNA is twisted on a slant that makes sainthood for me as likely as me ever shopping at Goodwill to retrieve my button pants.

And speaking of DNA, I am afraid that I may have inherited the longevity gene of my parents. I look at my mother and see how much I fear growing old.

Because I didn’t plan my life well. I chose to not reproduce. I didn’t have a daughter who would choose nursing as a career. Who would feed me, mix my drinks, and wipe my arse when I could no longer manage. A female offspring who would freely navigate the financial/medical/equipment-requiring/long term care nightmare with me. Failed again.

Mitochondrial DNA (or mDNA) is inherited strictly from the mom. Because mDNA can only be inherited from the mother, meaning any traits contained within this DNA come exclusively from mom—in fact, the father’s mDNA essentially self-destructs when it meets and fuses with the mother’s cells. So my claim that “I am truly my father’s daughter” only really goes so far as my brown eyes and skin with lots of melanin.

So given how weak (and purposely unaccountable?) male DNA appears, I guess it stands to reason that people assume that breast cancer (like thinning hair) is inherited from our mothers. If you recall, I wondered this myself when I was first diagnosed. Narrowing my eyes and whispering “Why me? Who should I blame for this crap? Who else peed in our family gene pool?” I found a sister, some aunts, and one uncle. Not enough for any kind of pool party, gene or otherwise.

My mother? Nope. Nada. (Other than some basal cell skin cancer that a redhead who never wore sunscreen could expect.)

So my research indicates that the mDNA may have carried the handgun, but the shooter acted alone. I was the trigger-puller.

MY life choices, MY stress, MY alcohol consumption, MY hormones, My cigarette smoking, MY consumption of all things fried or sugary. MY love of foods containing monosodium glutamate, artificial colouring, sodium nitrite, guar gum, high-fructose corn syrup, artificial sweeteners, carrageenan, sodium benzoate et al. MY free handling and inhaling of insect sprays and fertilizers. MY sleeping in a crib that likely had leaded paint. (Ok THAT one I’ll put on Mom.)

I also think that there is also the possibility that NONE of the above has shit-all to do with my getting breast cancer.

Maybe it was just a matter of a couple of normal cells who decided to become asshole cells that got together and decided to have more baby asshole cells. No promoting was required. No offer of a free toaster. It was just a slow Saturday night and there was nothing on Netflix for them to watch.

So I will not look back.

I will not try to find the answer to the “What did I (or my mother) do wrong?” question.

I also will not try to find the secret to a long life. Because I don’t really want to have as long a life as I thought I once did. And because if a 99 year old doesn’t know the secret….

I will instead try focus on and celebrate what each day of my life will hold. A laughter-filled and horribly played game of (distanced) golf with a friend, a self-applied facial, a joke shared with my Mom, the removal of a chin hair on the first try, a sunny sky with heat enough to bring spring buds alive, a cocktail in the afternoon, or any one of a thousand different things that make being alive actually worthwhile.

Pandemic or no pandemic.

Maybe THAT is something I inherited from my mother. And I will be grateful for her no matter how long a life I live.

MARK TWAIN Said it Best

 

I was 30 days delayed by COVID-19 restrictions in getting my annual mammogram. Going into the hospital (even though there hasn’t been a significant number of COVID cases reported in the Comox Valley) illustrates a “new normal” that I have no doubt will remain for a significant period of time.

As I said earlier, I do still consider myself immune-compromised, so I am grateful that as an RN, I understand the proper way to distance, hand wash, wear a face mask/shield, and the difference between cleaned/disinfected and sterilized.  I was rather impressed with the semi-well-oiled precision of designation for people movement into and out of the hospital.

As always, the radiology technicians are kind and professional. Mammogram completed on May 26th.

As is my perverse, prying manner, I had to sneak a peek at the images on the monitor as I dressed.  As the technician said, “Well I don’t see anything worrisome here”,  I noticed a rather light coloured/irregular circle on the edge of one of the images.

I pointed it out to the technician with a knot in my stomach. I knew I hadn’t seen this white blotch on my previous scan, so of course, I immediately began to hear distant machinery groaning and grinding as the Tit-O-Whirl ride begins to power up.

“Oh“, she said, “It’s just an enlarged lymph node. Nothing to worry about I wouldn’t think, but the radiologist will have the final say. You should hear from your doctor in 2-3 days”.

I had my first diagnosis in 2016. This is 2020. My mind jumped to the “5-YEAR survival rates charts”. (I did warn you earlier of my potty mouth, right?)  Shit. Fuckity, fuck, fuck, fuck.

Two days later (28th)  my family doctor called to inform me that the radiologist wanted me to return for an ultrasound of an “irregular shaped and enlarged lymph node in the LEFT breast.”  (You’ll recall that my original cancer was in my RIGHT breast), but as docs so often do, he added that it was “likely nothing to worry about and they are just being cautious, considering your history“. Now make no mistake. I adore /admire/respect my family doc. But THAT sentence is just about the biggest waste of air and words that can be strung together and delivered to anyone who has been on the Tit-O-Whirl.  Which is now humming loudly as I am approaching the ticket window.

As usual, now the wait begins to be called by x-ray for an ultrasound. I asked them to call me on my cellphone (as I am living with my 98 year old Mom during COVID restrictions) and made sure they had the number. I turned up the ring tone. I set it to vibrate. I carried it with me to the toilet and to bed.  I didn’t work with ANY loud machinery like lawn mowers, hedge trimmers or leaf blowers.

Then at 4:30 in the afternoon, three days later, my husband says a message has been left on the house phone from x-ray bookings. (!!!!!) When I tried to reach them, the message machine informed me they were closed for the day and would re-open on Monday. Please return and read the last sentence three paragraphs back. (Never mind, I’ll save you the trouble. Fuckity, fuck, fuck, fuck. )

They called me early on Monday morning as a result of the message I had left on their machine Friday afternoon.  I had my ultrasound two days later at 11 AM.  Ok. I may have left four messages.

My doc called me 4 hours after my ultrasound (!) to tell me the ultrasound report  had just come through and he happened to be at his computer. (I am going to imagine him sitting there waiting for it. HAHA!)  He quickly reported that there was absolutely nothing to worry about. The irregular shaped /enlarged  node had now become “A small,  and insignificantly enlarged axillary lymph node that does not even require follow-up and that all mammogram breast tissue was clear.”  

I took a deep breath and mentally ripped up the “worry” ticket. The mechanical noise of the ride was silenced.

Then my doctor shared with me a gem that I will try to hang onto for quite a while.  He said he had been reading Mark Twain and was struck by one of his quotes.

“I have been through some terrible things in my life, most of which never happened.”

I laughed and agreed but afterwards all I could think was 1)  Wait! My doctor reads Mark Twain!??  (Guess it helps him pass the time while he is waiting for my test results to come up on the computer…)

And 2) While I admit he had a great way with words, I bet Mr. Twain never really knew a woman with breast cancer.

 

 

 

 

 

 

What The Actual %$#@ ??

It is April 2nd, 2020.

An entire year since what I planned to be my “final” entry in this journey’s journal.

I waited until today to write this in the hope that what is happening in our world at the moment might possibly be announced as some extremely elaborate April Fool’s prank, and we would all be happily busy organizing the lynching of its creator.

Alas, there was no such announcement and here we are.

Since March 13th, all Canadians have been advised to “social distance for 2 meters” and “self-isolate” – stay home and avoid ALL non-essential outings.  (I have been living with Mom who is 98 years young since our return from Mexico on the 1st of March, and we have actually been self-isolating since the 9th.)

On March 30th, I received a call from the Radiology department to inform me that “because of COVID-19, your annual diagnostic mammogram scheduled for April 30th has been indefinitely postponed“.

I can’t say I was shocked to get the message.  Non essential dental appointments,  eye exams, hair cuts, pedicures, physiotherapy appointments, exercise classes et al had all been cancelled in the past few days.

What did surprise me is that a repeat cancer check would be deemed “non-essential”.

“Consistent with the Ministry of Health’s recommendation that all non-essential health care services be delayed in light of the COVID-19 pandemic, the BC Health Ministry is recommending that all routine cancer screening tests be deferred.”  

I scratched my head that I ,or anyone who has been on “the ride”, would ever consider ANY part of this annual or semi-annual check to be ROUTINE.  I told her that I believed it to be a MANDATORY receipt of a small bit of reassurance that should never be dismissed.  And that the “indefinitely” postponed statement that equally troubled my soul.

The caller tried to reassure me that “when we start doing mammograms again, your name will be at the top of the list“. (I know everyone else was told the same thing so this Mammogram List must be an odd looking thing with everyone’s name at the top).  I realized it was not this woman on the phone who made the decision.  It was merely her job to deliver the shit sandwich.  I (surprisingly) remained calm and respectful and thanked her for her time.  I didn’t keep her on the line to rant, argue or cajole.  I knew she had a lot of shitty calls to make, and that she didn’t need/deserve to hear my opinions.

After I got off the phone, I felt a deep sadness. Interestingly, not for myself  but for all those who would be AFTER me on the list. All those who have not had the displeasure of the ride and not yet earned their place at the TOP of the list.  Those who would not be having a diagnostic mammogram, but rather their first scheduled screening one.  Women who had perhaps, like me, an interloper too small to be detected without an x-ray or CT.  Because their tests will no doubt be moved back even further.  Sadly, those creepy, uninvited squatter(s) will have even MORE time to settle in and send relatives beyond the confines of the original site before detection and eviction.

That evening a story was on the news of a woman who had her DIAGNOSED cancer surgery (mastectomy) postponed for an undetermined period of time. I actually gasped when I heard the health minister state that “Only life or limb-threatening cancers will be addressed for now“.  How is ANY cancer not considered potentially life threatening?  Do many people actually get “limb-threatening” cancers?  He went on to say “Patients with solid tumours, including breast and colon cancer, may wait up to four weeks.”  Jesus.

And those who have HAD their surgeries and are now bracing their minds and dropping white blood cell counts to frighteningly receive repeated chemotherapy treatments in a COVID-19 virus-laden world?  Even MY heart is racing madly at the mere thought!

And those who have ALMOST completed the ride and are waiting for radiation treatments? !  Breast Cancer statistics show that when the start of radiation was delayed more than 50 days after surgery, medial overall survival dropped to 6.5 years.  And studies show those who miss radiation sessions during cancer treatment have an increased risk of their disease returning, even if they eventually complete their course of radiation treatment.

Visits with oncologists now MUST be done through video conferencing. A blessing if no other option exists, but definitely not as clear and enjoyable as one done face-to -uninfected face.

And if it IS determined that your breast is a threatened limb? And you are invited to join the ride at this time? You WILL have to go through much of it alone. No one is allowed to accompany you into hospital or treatment center.

Some breast cancer treatments — including chemotherapy, targeted therapies, immunotherapy, and radiation — can weaken the immune system and possibly cause temporary or lifelong fibrosis-like lung problems.  So like many, even though it has been a few years since the end of my treatments, I still consider myself “compromised” in regards to a lung killing virus that spreads so insidiously and indiscriminately.

The Breast Cancer Websites are busily “updating” information trying to re-write previously held dogma.  What once read “Delayed surgery, administration of cytotoxic systemic therapies. and radiation can decrease the benefit of these treatments.” is now trying to reassure that “If this is happening to you, know that you are not alone — many people diagnosed with cancer are having their treatments rescheduled right now. Any appointment can be delayed or cancelled if in the doctor’s judgment, it does not risk harm to the patient.”  So having all mammograms and most treatments delayed tells us that what they told us before about delays was bullshit?

Psychologically? This is all pretty fucking cruel.

I feel guilty at the relief I feel that MY ride happened 4 years ago and not 4 days/weeks ago.

I couldn’t help but wonder who is going to track the statistics after this chaos ends (WHEN it ends!) and complete the studies of how COVID-19 affected so many different kinds of cancer treatment outcomes?

I wondered how many women will be devastatingly affected by NOT having a tumour found early; or having treatment begun/ completed in a timely manner; or have followup testing delayed to check for recurrence?

And I wondered if we/they should succumb to the beast, will the cause of  death be considered “COVID-19 related”?

STAY WELL, dear reader!

STAY HOME! WASH YOUR HANDS OFTEN AND WELL! KEEP YOUR HANDS OFF YOUR FACE! STAY 6-8  FEET AWAY FROM OTHERS IF YOU HAVE TO GO OUT!

Oh. And do your self-breast exams.  You will have plenty of spare time.

 

 

 

Final Outcome

I promised a “final” update after my oncology visit so I will keep my promise to those who still have any interest in this seemingly never-ending story of mine.

I shared a lovely drive to Victoria (takes about 3 hours) to see my oncologist yesterday with my sister Anne. She likes to drive so I was thrilled to sit and enjoy the spectacular vistas of “earth’s rebirth” on Vancouver Island on what was a sterling spring day.

The visit was about reviewing my options in the oral hormone/chemotherapy category.  The Tit-o-Whirl rides slows but never really stops.  I did a bit of reading before the trip so as not to appear uninterested to my oncologist.  If you recall, I was not filled with warm fuzzies from my medical oncologist when we first met, so I wasn’t really looking forward to having this chat. But I was determined to at least have some REAL hard questions for him that I would not let him pass on answering.

My tumour was a hormone-receptor-positive (fed on estrogen) little bastard.

So for those who have taken Tamoxifen (or who have read up on it), you can skip this little educative bit if you like.

Since its approval in 1998, tamoxifen has been used to treat millions of women (and men) diagnosed with hormone-receptor-positive breast cancer.  Tamoxifen can (so we are told) reduce the risk of breast cancer coming back by 40% to 50% in postmenopausal women (me) and by 30% to 50% in premenopausal women.  It can reduce the risk of a new cancer developing in the other breast by about 50%.  And most importantly (especially for me…..) if any breast cancer cells escaped past my lymph nodes and are lurking elsewhere in my body, Tamoxifen can slow or stop their growth.  It is usually taken for 2-3 years (followed by an aromatase inhibitor for another 2 years) in Canada.  In the US  and Europe, it is now common for a 10 year treatment of oral hormone therapy for cancer treatment.

What I didn’t know is that it can also be taken by those who have not actually been diagnosed with cancer, but are at high risk of developing it!

Tamoxifen offers other health benefits that aren’t related to treating cancer. Because it’s a selective estrogen receptor modulator or SERM, it selectively either blocks or activates estrogen’s action on specific cells. While tamoxifen blocks estrogen’s action on breast cells, it activates estrogen’s action in bone and liver cells. So tamoxifen can: help stop bone loss after menopause and lower cholesterol levels!  YAY!

However, as you may be sure….there is always bad with the good, right?  So Tamoxifen, along with the potential for a MYRIAD of shitty, annoying fuck-with-you side effects (like weakness, memory loss, vaginal discharge or extreme dryness, vision problems, mood swings, depression to name ONLY a few) also brings the risk of blood clots, stroke and cervical cancer.  YAY!

So after Cousin Tammi has her way with you, you move on to an aromatase inhibitor  for 2-3 years.

The ovaries, while they are our main source of estrogen, are not the ONLY source.  Our adrenal glands, located at the top of each kidney, make small amounts of estrogen and so does fat tissue and brain tissue through the activity of an enzyme called AROMATASE.  So even us old peri and post menopausal dames are capable of making enough estrogen to feed those cancer cells that thrive on it. (Some factors known to increase aromatase enzyme activity include age, obesity, insulin, and alcohol…. YAY! That covers most of us peri and post menopausal dames!!)

So the smarty-pants scientists decided to develop an aromatase enzyme inhibitor (Aromasin, Anestrazole or  Letrozole)  which are meant to stop your body from producing ANY estrogen through enzyme activity. Because these meds lower the amount of estrogen in the body, less estrogen reaches bone cells, which can lead to significant bone thinning and weakening and a higher-than-average risk of broken bones. It also has a long list of side effects that mirror Tamoxifen, especially heart problems (27% higher risk).

Because I am osteoporitic (already have shown bone density loss), and I have had NO side effects from the Tamoxifen, my oncologist feels that I should continue with “cousin Tammi” for the full 5 years and likely continue for another 5 after that. And that the results will be virtually the same as if I had switched to an aromatase inhibitor.

I am happy to stay with the “known”.  I am happy to have me back.

So dear reader, my ride seems to be done for now, and so am I.  Thank you for sharing and bearing it with me.

Spinning Into ANOTHER Year

It is April  23, 2019. I was initially diagnosed with my breast cancer (with Lymph node involvement) on April 28, 2016.  It has been ANOTHER spinning, circle of the sun made by the earth AND this survivor.

I am so grateful that I am feeling so well.  So…. myself.

Pilates, TRX, dog walking, golfing, Mexico holidays, lunches with dear friends, taking care of my Mom, laughing with my sister, mundane tasks, and just….being.

So I had my “annual” mammogram this AM (23rd).  I have an appointment to see my oncologist in Victoria on the 29th. I believe he is planning to perhaps switch my oral hormone, and I am not sure how excited I am about this as Tamoxifen is proving to be an easy ride for me. He also may just want to “see” me and make some easy coin.

As usual, the mammogram (after a cancer ride) is an appointment that is filled with equal amounts of  spinning optimism and dread….I was happy to hear the sweet little technician say, “See you next year!” as I went out the door.

She reassured me that the pictures would be read by end of the day and I would be contacted no later than tomorrow if “anything” was seen. that would require me to return for ultrasound.

“ANYTHING”.  HAHA! What an odd spin of words of trying not to scare me. But bless her for trying.

I didn’t see the message light flashing on the phone until 5:05 PM.  My doctor’s office left a message at 4:50 PM to “call as soon as possible and ask to speak to the office nurse”.  As my heart rate picked up, I dialled the number and waited for about 10 minutes for someone to speak with me. “Sorry”, I was told, “The nurse goes home at 5 PM, you will have to call back tomorrow.”

Well now.  Sound familiar? Are you imagining me going into a spin?  A potty-mouthed-laden rant about the fucking ignorance of this?  HAHA! Oh…..I confess, it crossed my mind. But just for a second or two.

But….instead, I said I would call in the morning, and I actually found my heart rate had settled almost immediately.  Whaaaat? Who IS this stranger feeling calm and resigned to wait a whole evening and night to hear what it is that they want?

Weird! But kinda cool at the same time. Does it mean that I have evolved? Learned? Changed?  Grown? I realize that I could still chew my arm off for a smoke, and I still am having my two cocktails everyday, so not EVERYTHING has changed! But my sense of what “needs my wrath” has indeed changed, apparently.

I proudly present to you a 63 year old woman (who thought she was indelibly set in her ways) who seems to have climbed a step.  I am still PROUD to be an annoying asshole who speaks out against almost everything that does not fit into my sense of what the “world-order” ought to be,  but the tit-o-whirl ride has somehow spun a new mental path for me. Some of the synapses in my brain seem to have found new options for me to disseminate and digest things.

I find myself wondering if this would have happened if I had NOT taken the cancer ride. Whether it is Tamoxifen, a survivor mentality, or simply a growing older kind of thing, I am welcoming the growth.  I will add another journal entry after I have seen the oncologist.

I am happy to let the earth do the spinning on  its’ own for a change.

NOEL

WOW! December 2018.  Merry Christmas!

SIX months since I last made an entry! My bad! My life seems to be moving forward at “WARP” speed. Again. Not sure if that is good or bad!

My life has returned to pretty much its’ old self. which is perhaps why I am not journalling as often.  I turn around and the day/week has simply dissolved.

The Tamoxifen that I take daily seems to be more of an inconvenience than a problem…..no side effects that I can point to as being “completely unacceptable”.  I always had chin hairs; often had night sweats; usually had a hard time managing my weight; never could do a sit-up……

I have started doing Pilates Yoga and TRX.  TRX stands for Total Body Resistance Exercise.   “Yes!” They said. “TRX training helps to lose weight! It’s an intense workout that will help you to build and tone muscles, but you’ll also lose fat so that these muscles will be more visible. …  the muscles you build will burn more calories between workouts!”

I have no idea why I believe this when “they” couldn’t even get the acronym right….But I tried to find an image of “TRX and fat woman” but happily they don’t exist. So sign me up, Scotty!

Then I am told that Tamoxifen will “inhibit muscle growth”.  The fucker. I do feel the stretch (sometimes uncomfortably) under my left arm pit where the lymph node was removed.  I wonder if TRX would be even harder if I had had more nodes removed.

.

Just to be clear. THIS mage is not me. (HAHAHAHA! Like I had to tell you.)

Here I am…or at least it is likely how I appear in class. As God is my witness.  I think it is because my outfit and sneakers do not match the straps. Or maybe because my boobs are off balance. Nah. I’ll go with the colour coordination failure.

But I DO feel “stronger”. Whatever THAT means…. I wish I could mesh the physical with the mental.  People keep asking me …. “How ARE you”?  (STILL with the head tilt).  “GREAT”!  “FABULOUS”! “NEVER BETTER”!  I can’t bring myself to tell them what is often the truth.

Inside, I often feel older, more tired, and a bit anxious.  The old “after cancer treatment” remnants still linger, I fear…..

I realize that my “time” with my Tamoxifen is ticking away.  I will meet with the oncologist and be “switched” to a new medication in about a year. I wonder if I will have as little “problem” with the new one.

I keep my hair wicked short, and rather chuckle when people who barely know me say” “Wow! your hair is starting to grow back in!” (It has been 2 years. I have a black-humored heart, I know.)

I realize that this coming spring will signal three years (!!)  since my diagnosis.  It seems a long way in the past but also seems like only a few weeks ago.

As the Christmas season speeds by, I am trying to slow down my mental processes enough to recognize and be thankful. A hard thing to do when assaulted continuously with the “Material Merry Christmas Messages” that bombard us starting in October. I want to think about “my life experience” a little more deeply and see what makes my days ( that fly by)  worth remembering at the end of the year.  Or at the end of my life.  I want to try and extend myself a bit more so that those “worthwhile” memories are more abundant.

See what it is that I am missing and understand what I can change.

I recognize and am thankful that I am surrounded with blessings all year long and that most of them come in “angel” form.  Souls who touch mine when it cries to be touched and souls who need mine to touch/soothe/tickle theirs from time to time.

I recognize that it is more often than not a wonderful world I live in and I’m glad and thankful I am still here.

So dear Santa, you can feel free to not worry about what I “want” or ” need” for Christmas this year.  I recognize that I have enough money to buy the colour coordinated TRX outfit, and am thankful that I prefer not to.

I’ll get that “sit up” done on my own, eventually. And if I don’t?  I’ll still be OK.

 

PS: I got to get a photo this summer that made my day! Even better that Mom took it.

 

 

 

 

 

 

Re-defining and Moving Forward

So last night I was blessed to have attended a lovely gathering of valuable and grace-filled souls.

It’s the best way I can describe the colleagues and friends I have gathered along my journey as a nurse.  Women who are strong, smart (some, brilliant), wickedly funny, caring, and insightful.  Some live alone; some are married; some with partners; some have children; (some even have grandchildren!) I have known some of them for decades, others for only a few years. some are retired and others are still slogging through the arduous shifts in the recovery room, operating room and various supportive departments that we all depend upon to “move forward and get ‘er done”.

Some of our conversation was about how stressful retirement can actually be! Even though it is something we all SAY we are happy to reach!

A friend texted me this morning and asked me to try and write out the things I said in our conversation together as she found them to be “right on” and they struck a chord with her. It made me revisit my thoughts and I thought maybe it was worth a journal entry.

So. I wrote on Facebook:   “It is MY philosophy/belief that nurses often DEFINE themselves by their work. Over the years we often push partners, children, sleep, food, (and especially OURselves) into the background as we immerse our heart, hands and brains completely into our passion/gift/art of helping strangers. It is WHO WE ARE. Why would it not be expected that for some, having to “re-define” all of that would be such a challenge? (Even our own nursing college refuses to let us keep our “RN” status after our names if we are not part of the “work force”!)
So I think it is important for RNs to support, honour, and help each other keep a healthier “balance” throughout our careers (and into our retirements) so that we can see ourselves for ALL that we are, not just simply what we do (or did!). Once a nurse, ALWAYS a nurse, true….but we are so much more. And we deserve all the happiness life has to offer when our shift is done.”

I find myself wondering today, why and how it is that I let myself be morphed into a creature who defines herself almost exclusively by what I did for a living?  And NOT what I am doing NOW to live?  Sometimes I worry it may even be to the extreme extent that I may have  lost important parts of myself along the way.  I am such a “selfish” person (something I say usually with a tinge of pride) that I am surprised at how easily I seem to have slipped into that woman who often defines herself by her nursing career or what I do for others…. Kind of stuck in a role and a personae that was (is) just a small part of who I truly am.  So even though I have totally adjusted to my retirement from nursing, I STILL often “define myself” as a nurse. A care provider. THAT is kind of set in stone, and I can “carry” that.

But I DO want to re-define/ re-adjust other parts of who I am. Especially the part that sometimes feels I am not doing “enough moving forward” with my life. My left brain, who wants me to be musical, creative, volunteer, meditate, exercise (et al).

But what if I “dance like nobody’s watching” and someone gets it on video and it goes viral? What if it turns out I can’t dance worth shit? I can’t read music. I hate exercise.

What if “I can’t”? What if?

So. How is it that I have become so engaged (if not married) to the thought that I actually have the power to control situations? And be so disappointed in myself when my expectations don’t always materialize?  My right brain tells me, ” Shit will not ALWAYS turn out the way YOU want it to.  Deal with it.  It’s perfectly all right. Move forward. ”  But still, I often struggle to embrace the wisdom of that part of my brain.  (It is too opinionated and fact-based in my opinion.  I also suspect it has been colluding with my left brain.  I may start an investigation.)

But curiously, even though I have almost adjusted to my Tit-O-Whirl ride, I still find myself “defining” and “re-defining” the ride.  It’s that “re-defining” that has me fascinated. And seeing that things can be viewed differently.

I am creeping forward (sometimes at glacial speed) and discovering that the more I let change “in” and see the impermanence in my life, and that sometimes shit happens for no reason (or at least as a result of something I did or didn’t do) the happier I actually am.

Embracing change (allowing for some re-defining”) has brought newfound strength into my life. And 44 years of nursing isn’t what did it. It was having cancer.  How fucking weird.

I won’t say it has brought me inner peace because it hasn’t.  I am still the chaotic, fearful, interrupting, outspoken control freak. ( I would miss her if she totally went away.  Feel free to re-visit the journal entry on why I shall never obtain sainthood.)

But I can see  now that when life fails to ruin you with its’ ride’s twists and turns, you realize that changes can’t break you. And THAT makes it possible to listen to my right brain’s wisdom. (At least from time to time!) And tell my left brain to be patient.

And continue to move forward. In retirement AND life.

 

 

What the Dragonfly Said…

Where Is The Instruction Manual For Life After Cancer?

I am including a VERY well written article by a woman who blogs named Dragonflyangel. Worth a read if it may apply to you and to those who live with/love someone who has experienced cancer. Or you can go to her blog for more bits of insight…. It was shared with me and it resonated.

She wrote:

“During cancer, you get books and pamphlets that have information on treatments, doctor appointments, etc. But then there is the life to go back to when you are done. What now?

Those nagging words – “You have cancer” – can really feel like a sucker punch to the gut. They are unwelcome, unnecessary, and just flat out mean. I heard those words when I was 32 years old when I was told I had breast cancer. I remember I cried about three tears…okay, maybe four tears, put my boxing gloves on, and never looked back. I cried only one other time and that was when I was told I was going to lose my hair. I knew that was a given, but come on! Cancer had taken everything from me – my breasts, my peace of mind, and my calm. It was going to take my hair too? That was my last straw. However, I kept the boxing gloves on and moved forward, because what choice did I have?

I finished my six months of treatment and although it was rough, tiring, scary and overwhelming, I made it through. I was now a cancer survivor. Yippee! But that feeling of joy never hit me like I thought it would. This was the day I would run out of the office with my hands up, cheering and happy. Instead, I walked out more terrified than I was the day I was told those three dreaded words. What was wrong with me? I later came to find that nothing was wrong with me. The “now what?” side of cancer had just hit me and I didn’t know what to do. I did the only thing that came to mind – I cried.

Where was the manual for life after cancer? Where was the pamphlet on the “what now”? How come no one told me about this world? I went from seeing doctors every week to now every three months? I had chemo running through me for four months and now there is nothing. I got a certificate for completing chemo, a pin, and I was sent off on my merry way.

About a month later, the emotions of everything all came crashing down. I felt like I had literally stared death in the face. That was obviously an emotion I was not prepared for. The survivor’s guilt set in too. Why was I lucky to have survived? What do I do with my life now that I have a second chance? Everything became too overwhelming. I saw a therapist a couple of times to help with my emotions. It felt good to talk about it and realize the feelings were normal. The problem was I didn’t want a “new normal.”

It took a long time to find that “new normal” and officially accept it. Sometimes I still don’t want to. I am over five years out now. When will cancer officially crash into a brick wall and stop tailing me? I walk fast, it speeds up. I run, it keeps pace. It hasn’t caught me yet and I hope it never does. I look forward to the day where I turn around and I don’t see it keeping up. I have been working hard at that and believe it will eventually happen. In the meantime, I keep working on my “new normal.”

From one cancer survivor to the next, things truly do get better. It’s harder for some than others, but you do move forward. Acceptance is the key. Mourning your old self is a fine way to start. Allow yourself that. I did not initially. I am in the process of accepting now and it is a good place to be. You don’t have to forget, but you do need to move forward.”

Forces Outside Ourselves

Three months have come and gone. I am in a whole new YEAR!!!

I have thankfully recovered from my ” flu/pain issue” at Christmas and have been getting back to feeling well.  A trip to Hawaii, some weight loss, starting pilates YOGA, volunteering at a dog kennel, and some sunny days have forced me back on “my” track.

You may or may not remember my mentioning  a friend/ nursing colleague with ovarian cancer whom I shared some Chemo session laughter with (see my blog of November 3rd, 2016).  She passed away this January.

It was hard to see her just before she died. It sucked. I experienced a strange emotion  that forced itself into my heart.  Not in my HEAD, but into my heart. I felt it break a little.

Guilt that I was feeling so well.  Guilt that I have survived.

My head was, as always, rational and told me that I should “not allow” it in.  It came anyway.  Forced its’ way past my common sense blockers.

But where the fuck did it COME from? Why should I feel (of ALL things) guilt??? I meditated, prayed, and did some soul searching on my walks.  I even shared it with a few friends and they reassured me that it was merely “stinkin’ thinkin’ “.

I never found the answer and thankfully the guilt slowly snuck away as my memories of Kathy stopped being of her final day, and returned to those of when we laughed and worked together for so many years. ( If anyone who reads this has any ideas on why I felt “survivor guilt” here, I am open to hear your theories….)

 

Today, I got a text from my dear “ObiWan” who just went through a scare with HER annual “sister squeeze”.  My Tilt-O Whirl guide (interestingly, also named Cathy buy with a Cee) calls the annual check up, appropriately,  “The Black Legacy of Terror“.

This has stirred me to journal today,  as I realize that there are so many things in this life that can suddenly force us to our knees. Unknown and unwelcome forces that seem to multiply when you have been on “the ride”.  The loss of anyone else you know that had cancer; irritating pharmaceutical side effects; surgical scars; altered body image;  weight gain; weight loss; hair loss; memory loss; fatigue; and especially overthinking that every “sideways fart” is somehow indicating Death is lurking around the corner.

Cee had to undergo extra pictures, hushed consultations between technicians and radiologists, hurried ultrasound, and then ANOTHER ultrasound…..(no doubt more of a “I will need to burn my underwear after this ” experience than simply a “scare” experience).  She was finally given the somewhat reassuring phrase of  “nothing to worry about”  but those who go through these annual breath-holding exercises after cancer treatments will understand her agony.

I can almost FEEL the expulsion of air as she allowed herself to breathe again. And somehow, you just force yourself to your feet, step out again, go back to work, get on with your day, do laundry, interact with strangers, family and friends as if your world is not still spinning madly.

My guts tighten up and a not small number of butterflies take flight in my stomach with the thought that my own  “annual (second!) check up with mammogram” is only days away.  While I am pleased I have made it to TWO, and am fairly confident that it will be fine, I am journalling to perhaps connect with those others who are also forced to “mark their years” now not only at their birthdays.

To let them know that we totally are with them (and know they are with us) as we are forced to step up to the ride again, forced to hold our breaths, and forced to wait (and hope) to hear, “Sorry, Miss, but you will have to go to the end of the line until next year. No ride for YOU t’day!”

May “The Force” (…. only the good, strong kind) be with us ALL on our journeys and rides.

So sad to see you go Kathy.  God speed.

So, SO happy to hear you are staying in line with me Cee.  I am not done laughing with you.

 

It Ain’t Over ‘Till It’s Over

So Christmas is ten days away and I am going to be celebrating not only a “joyeux Noel” buy also a full year since ending my chemotherapy.

I wish I could say I was feeling 100%, but a flu a few weeks ago ( I usually get a flu shot but this hit me before i had the chance!) had me “out for the count” for a full two weeks and it culminated in “something going on” (sorry….it’s the best description I can do) on the right side of my chest immediately below the breast.

It started with a very mild little pain when I coughed (I would simply hold my side) that progressed over about four days into a monster.

It has been a pain that is so intense (like a rib fracture) with any slight deep breathing or God-forbid…a sneeze that it has had me pretty much immobile for about three weeks now. Along with a phlegmy cough that has me almost weepy when it hits.

I even got so bad that I went to the local ER at 6 AM when even regular breathing seemed too difficult.  They gave me a shot of Toradol (anti-infalmmatory which hurt worse than the chest pain) and four hours later in a department with only three other patients, I managed to have an ECG (cardiogram), a chest x-ray and blood work. The doctor informed me that there was nothing to be seen in any of the tests except for a “very minuscule tear of the outer lining of the lung. There is also likely some torn ligaments or muscles along the chest wall that would not show up on x-ray.” “(thank you Captain Obvious” )

So no broken rib, but at least an understanding of what was causing the pain.  I am told it could well be as a result of the radiation treatment to my right breast.

How long to have it heal?  Could be “a while” I am told.  Instructions to rest, take Tylenol and Ibuprofen sound particularly lame. Especially at THIS time of year.

So while I am resting, I begrudgingly re-visit my information on radiation.  Among the words, I find stuff I knew and some stuff I probably was told, but it was down-played to a point that I didn’t pay close attention.

“Radiotherapy makes tissues less stretchy. Doctors call this radiation fibrosis. How this affects you will vary depending on which part of your body was treated. Fibrosis may cause any of the following:

• fractured rib due to a weakened rib cage
• inflamed lung tissue”

Yup. Nice.

So.

Here it is, time to be putting up and decorating trees, lights outside, going to Christmas parties, shopping for gifts, planning and having get togethers of our own.  What is Sally the Sloth doing?

Same thing as this time last year. Mattress surfing, wasting the days, and feeling like a complete burden on everyone around her.  Watching as THEY do all the Christmassy tasks for her and realizing how lucky she is to have such loving, supportive family and such understanding friends.

I think I am also feeling cheated in a way.  A lump of coal (more like a lump of shit, but I will go with the “seasonal” description) has been dropped in my stocking and I am NOT amused.

I knew going into this ride of treatment that it would be long and dreary.  I was not disappointed. It was everything I imagined it would be and more. This time last year, I fantasized about “next year”.  All the things I would do at Christmas ….when I had energy and hair.  The radiation vacation was almost enjoyable and as my energy came back, I was starting to see the return of …..me.

Every time I met anyone they would say “Gee you look great! How are you feeling”?  I would respond (sometimes with more enthusiasm that I felt), “Just great! Wonderful!”

Now I realize that what has returned is, in fact, me….but the “OLD” me.  I feel like I have aged more than just a year.  I seem to be moving through thick, knee-high grass.  I can do it, but it takes more effort than it should.  I am envious of those around me who are seemingly unencumbered by any aches or pains.  I can’t remember being this whiney before the ride.

So I am now going to “buck up little soldier”.  Enough self-pity.  Push through the discomfort, and put on a smile.  There may be some residual dizziness after the ride, but this “mental caging” is unnecessary and completely of my own doing.

I am planning a dinner party tonight and to go out this weekend.  Anne helped me get my tree up, it looks great, and we will do a bit of out door lights today.  Christmas IS here and I am done with my treatments. I am being greedy wanting more perhaps and I intend to see the season with the knowledge that some are unfortunately still on their ride.

Joyuex Noel everyone! And Happy New Year!