I fervently hope this blog is being read by others and that they find something here that is beneficial to them. Whether they have cancer or they have a loved one with cancer. Perhaps, even someone in the medical field, the social welfare field, or some other professional field may find something here they can share with their patients or clients.
And lastly, I hope someone who knows me, is reading this, as I think it will help them to understand a bit of who I am and what a person with cancer is living with. If, however, my family and closest friends are thinking, “I will read it after she is gone. I haven’t the time, desire, or strength of mind to read it now; but after… I should have all the time in the world, to read it and process it.” That won’t be the case, inasmuch as, when all the time in the world, for me, is gone, so shall my blogs, my social media sites; FaceBook, Twitter, InstaGram, and websites, disappear. After I am gone, the time for any of this mattering will be gone, too.
January 21, 2018
I will start by telling you what is happening now, today. I worry about what I shall discover tomorrow. I have a doctor’s appointment. She will tell me the results of the biopsy done two weeks ago. I fear the results will not be uplifting or alleviate the bubbling dread I am feeling. Try as I might, I cannot easily pull myself into the now, and just live the moment as I would any other “normal” day as I did before I discovered the lump near my left shoulder the morning after a mostly sleepless night of pain, spent trying to find a position less aggravating.
Within the following two weeks, I had a CAT Scan, a PET Scan and finally another CAT Scan directed biopsy. (The biopsy was fairly painful, despite shots of lidocaine.) This last Friday, four weeks after finding the lump, my doctor’s office phoned and said “The doctor wants to see you Monday. Do you want a morning appointment or one in the afternoon?” I scheduled the appointment for 2:00 pm.
Part of myself I can still identify “as me” the “normal pre-lump me.” I am the same person, the same me that I was before knowing something was amiss – but my mental perception is what I am losing control over. I am quite often glomming onto a thin thread of sanity, which I fear will snap upon hearing the words slipping from my doctor’s lips to my ears on the morrow.
I am not a stranger to health issues, I have a litany of medical diagnoses – not a must read, but a background, if interested – Additional Medical Diagnoses – as well as two separate diagnoses of breast cancer. The first in early 2002, the second in the autumn of 2009.
It is now 1:08 am. I keep returning to this first entry, perhaps as a means of avoiding the bubbling dread threatening to break my weakly held sanity. I have always found catharsis in words, and through my writing – be it joyful or sad, for venting, or as a vehicle to pull me upward; the words have always been there for me and I gladly use the gift of them. I only wish that for tonight, they were lighter in nature: beautific in prose or celestial in imagery. But they are not. In simplest terms, I am afraid.
January 23, 2018
I chose not to post the revelations of yesterday, January 22, because I wanted to take a step back and think of other things, do other things that were not related to my medical diagnosis and condition. I needed a mental and emotional break. I yearned to “feel” normal.
So, I shall post today: Prior to my appointment, I packed a notepad and pen in my purse. I did this because when confronted with what might be bad news, I have a habit of “mind-blanking” and cannot recall what I wished to ask the doctor. Nor can I remember what the doctor shared with me, including any pertinent information.
My husband accompanied me, which was extremely comforting. The other two times I was told I had cancer, I was alone. The first time, I was driving back to the office, after having completed a home call with one of my clients. My cell phone rang and my doctor asked, “Are you in a good place to hear some bad news?” That call turned my world upside down and inside out, in the time it took me to exhale and inhale one shaky breath. The same way that losing the life of a loved one will transform your world forever, killing off a part of you that held a childhood innocence which protected you from life’s ugly realities – so, too, did hearing the words, “You have cancer.”
The second time I was told, it was a bright, sunny, beautiful day, and the news didn’t hit me until I was returning to my car in the parking lot of the Cancer Center. This devastating revelation had come shortly on the heels of my then-previous oncologist having told me since I had been clear of cancer for a good length of time – seven years since diagnosis – it didn’t look as if I had anything to worry about and that I should continue to live a cancer-free life.
His declaration was like a curse – fating that just the opposite would occur. I feared this malediction would revisit me when my current oncologist had uttered the same sentiment to me eight years from my second diagnosis. Seems lightning can strike more than once. As they say, “Third time’s a charm.”
Well… I have metastatic breast cancer, estrogen related. Different than the kind I had twice before. It is in the lung, the chest wall muscle, and lymph nodes. I also have fluid in my left chest that needs to be drained, hopefully only once.
I will be taking 2 shots a month and a specific pill for three weeks on and one week off, for the rest of my life. My oncologist said her other patients have lived years with this therapy and I could, too.
No chemo! Chemo would not be as effective as this new regimen, and, my doctor said, I would only have to resort to chemo if the current regimen fails. However, my doctor does not want to resort to chemo, if at all possible, for a variety of sound medical reasons.
Furthermore, no radiation, as I have had extensive radiation in that left chest area in the past and a person can only tolerate a certain level/dose of radiation in the same area, before the levels a person is exposed to cause severely adverse consequences.
After picking up the prescription for the pill I will be taking, while reading the paperwork pertaining to the drug, I learned the pill I will take is a chemotherapy drug. When describing this drug to me, my oncologist said it was not chemo. I’m guessing it is deemed as such because, perhaps it is not as damaging, or because it is not an intravenous chemo drug. I’ll ask her and find out. Whatever I learn, I will post here.
So, there it is. I am powering forward and envisioning my path to be that of those patients who live years with this therapy. I am kind of numb, at present. I need to leave the blog right now and get back to doing those “normal life” chores and activities, and maybe take a nap. One of the main side effects of the meds is fatigue. I’m no stranger to overwhelming weariness, as it accompanies my Sjogren’s Syndrome, my Fibromyalgia, and my Hypoparathyroidism – it is just that now, I will experience a more intense exhaustion.
January 28, 2018
Just going to ramble here for a little while. Jumbled thoughts, feelings, and observations.
You know, the moments, where every time I see or hear a commercial for a cancer drug. Or watch a TV show or movie or read in a book where the character has either just learned he or she has cancer, or they are afraid of finding out they have cancer, or they have died of cancer – it burns, like a bullet festering overlong in my flesh. Having been diagnosed twice before makes it no easier the third time around. It is nearly impossible to escape those moments, if you are exposed to any type of media – it is everywhere: on the computer, the radio, the television, the movie theater, in books and magazines.
With the prior two diagnoses, after a time, I was able to deaden that fearful response to hearing or reading those words. After a while, it was almost as if I was normal; with any normal person’s reaction to the disquieting “C” word. But, the hand of fate has turned the handle on the box, while an insidious off-key tune plays, just before the “clown-like” mask of the jack-in-the-box pops up, with its unsettling grin to say, “Cancer.” You never get used to it.
Moving on: The first time I was diagnosed with cancer, I lived alone and continued to work full-time. The second time I was diagnosed, I was married and we both worked full-time. This time, my spouse if still working full time. I am not working, as I was forced into an early retirement, one year from obtaining my full pension. This action was taken, after I had worked for The County nearly 34 1/2 years, because I was unable to maintain my usual level of work while undergoing radiation, and then chemo. It cost me hundreds a month in retirement benefits, as a result. It rankles every time I think on it, but it does no good to think about it, because it is done and cannot be undone.
The conundrum – who to bring into my circle of confidence: family, friends, associates and co-workers, neighbors and anyone else I may ponder about telling them of my situation. In 2002, I didn’t want to tell anyone. I didn’t wish to burden them and I wanted to continue living life as normal as possible. It was much the same way in 2009. And not much changes, I want even less people to know now. Perchance it is because this diagnosis, on the exterior, when first hearing it, seems most dire.
What I have come to realize, no matter who I tell in strictest confidence, I must live with the knowledge that that individual may “spill-the-beans” to many persons, near and far. So I strive to be very selective – and even then, there are no guarantees. (For various reasons, I am still debating whether to tell my mother.) At present, those who know are my husband, my brother and his wife, a few close friends in the area and other friends I have grown acutely fond of through my writing and our mutual love for dogs, especially Golden Retrievers. I am held up in prayer in their prayer circles, their church prayer warrior groups, and in their own private prayers to God. For their prayers I am deeply grateful! I believe prayer can cause the miraculous to manifest. Prayers are the most effective form of healing there is, that and one’s belief in the Creator.
Another embodiment of healing is the love given to me by my furkin: My furry family member (furry kin). Like the Creator’s love, the love from my furkin is unconditional; It is a gift from Heaven. In my darkest hours while dealing with cancer, I have found solace only in their warm, soft fur; nuzzling them close, sharing my thoughts and fears, while hugging them close to my heart and soaking their necks and foreheads with my tears. They listen and love! Had they not been there for me, I would not be here, for anyone.
It is getting late, 4:25 am, and my “chemo brain” is becoming less and less lucid. I need to try to get some sleep. Tomorrow I have agility training with my Golden. A warm and bright beacon that beckons me – the training with my Golden, and the hope of getting a peaceful night’s sleep, short though it may be.
Hi Ho the Merry Oh, a Venting I Shall Go!
My response to applying for Social Security Disability and being denied twice… This is a letter I sent to the local office, both in an email and on actual paper, sent in an envelope. I KNOW they received it, though I never heard from them. I have since received my third diagnosis of breast cancer.
December 23, 2017
The Administrator of the Social Security Office
I just received my second denial letter for my application/appeal for disability. My next option would be to file for a hearing, which, in order to “win” would require me to secure the services of a lawyer – to fight to get the services I should have already been granted when I applied twice before. This would be at a loss of money, on my end, hiring a lawyer and a loss in benefits, should I be granted disability, as the payments would be adjusted to pay for the lawyer’s expenses and to adjust any benefits I’d get by deducting a certain amount in consideration of the Social Security Benefits I already receive. This is unconscionable and unjust.
I was told by your office: “Based on your description of the job you performed as a social worker, we have concluded that you had the ability to perform this same type of work…” Seriously? Is that why I was forced into an early retirement – because I was unable to “keep up” and unable to perform my job as I had been able to do, prior to my illnesses? And you deemed me able to go back and perform the same job? Furthermore, you stated: “Despite your limitations we have determined that you retain the capacity to perform a wide range of light work activities.” So, I am to go back to being a Social Worker, pushing papers or other “light work activities” while my co-workers take on my work-load. This is not tolerated at the Department of Social Services, not by a worker’s co-workers or by administration. Had it been an allowable option, I would not have been forced into an early retirement.
I would sue the individual(s) involved in making the decision to deny my disability benefits, had I knowledge of who, exactly, was involved in the decision making process. Employees of the Department of Social Service have to put their name to any decisions they make regarding their client’s applications – this makes them more accountable for their work and it gives the individuals applying the opportunity to address that DSS employee directly. I was given NO names of anyone involved in my application consideration. I am guessing, and if it works anything like processing applications at the Department of Social Services, that whoever was assigned my application and my appeal held onto the case, doing very little serious processing on my case, until near the time of the processing deadline, at which time they denied it, before it would show up on their stats as overdue.
I was told by my Rheumatologist that you would deny my initial application and my appeal and that I would have to secure a lawyer’s services and go to court. How wrong is that? The Sjogren’s Foundation has also put out literature dealing with the difficult process of applying for disability through the Social Security Administration. The reasons for this are because most doctors, let alone staff at the SSA, know next to nothing about Sjogren’s. They do not understand the overwhelming fatigue the patient experiences, and have minimal understanding of the other physical/mental/emotional/and medical issues associated with Sjogren’s. I offered to send pamphlets to you, explaining more about Sjogren’s. No one took me up on my offer.
My Rheumatologist also informed me that the Social Security Administration never contacts the applicant’s/patient’s physicians to aid in determining their disability. She said all SSA does is download the information on file. How is that considered a thorough, honest investigation into a patient’s condition? How is that allowed?
You stated I have a “Thyroid” condition. I have a Parathyroid condition, not a thyroid condition. I have Hypoparathyroidism – another medical disorder very few physicians have heard about or know anything about. Once again, I offered to send you literature about Hypoparathyroidism, but no one took my up on my offer.
I used to be a writer: I have published 5 books and contributed to other books and publications. You can click on this link to verify this: My Amazon Writer’s Page
And you can Google my name and find my writings all over the place. Now, I am unable to write, as my mind, my brain will not cooperate. I don’t have the mental faculties to write anymore, as I used to. And you think I could continue working as a Social Worker or do “light work activities” at a job. I am overwhelmed with mental/emotional/physical medical problems and my ability to function is severely impaired on many levels.
While working at the Department of Social Services, I saw through my 34 1/2 years of service, how the Social Security Department operates – how easy it is for some to obtain disability benefits, while others who have applied are denied over and over again. I have seen the nightmare of desperation this has put people through, when it is clear they are disabled, beyond any shadow of doubt, and cannot get disability. There is a disparity prevalent in the system that will allow some to get benefits for the most insignificant reasons, while others languish for years, trying to get their disability benefits granted.
To say I am angry about your decisions to deny my application and my appeal, is an understatement!
At the moment, I do not know what action I shall pursue regarding my double denial. Anger and deep disheartening clouds my judgement at present. So, until I am in a better mindset to properly pursue this, I am sending this letter to you.
I signed it and added my claim number.
Well – dilly dilly 😦
A shadowed view of the darker side of life, which is not always as dreary as it seems in retrospect, especially when it can be purged on the page and shared by the reader. Though, in the global sense, no one is alone in their loss and grief, it is still a hard road to go down — but life goes on, as does the road. These pieces represent different times in my life when I have experienced the darker edge of the soul’s existence, as well as the moments of great hope, elation, and jubilation. And through it all I have realized, with life there is deep pain, as well as deep joy – the world would be off-kilter were it not so. I hope you see the light in the darkness of my work here. Thank you for reading!
How dark the dreary morning torn
when I awake to madness born
What once held a mind said sane
now draws forth a heart in pain
I’ve need to purge my tainted soul
to look beyond that deep cold hole
My spirit clean no longer more
seeks solace past the mortal door
Soft ‘pon the mist a knell doth toll
So, weep no more my death-stained soul
When the darkness cools
when the shadows fall
light the bright candles
and scurry from the halls.
Pad silently into night’s rooms
where judgement will ne’er prevail
the shadows dash the regrets
wherein daylight’s memories dwell.
Snuggle you here,
in the shade of night’s retreat
soothing vistas await you
settle in and take a seat.
Release a breath now
o’er the candle’s flame
that you may see…
And she who is the darkness
will tease your spirit free.
Yonder lies your journey
past the walls of your night’s room.
Come roam the scape of twilight,
Darkness beckons softly…
SCATTERED AND SPINNING
thoughts tumble round in my head…
Feeling my body more and more a stranger to me… Finding my spirit more and more the vessel that carries me; than the shell of my flesh.
Failures and aspirations
Loves – of my heart, my intellect, my spirit, my past and present.
Old thoughts and young thoughts
Feeling old and feeling childlike
Those dead and those dying and those who are yet to die. My own death.
Disdain of society, the world around me.
Worry and fear for the world around me, the world in me, the world I am in – for Earth.
Loathing my own species, and hating that feeling. Wanting to love the creatures we are, the animal I am.
Needing to connect with the oneness of creation around me, fearing others won’t, fearing the demise of all creation. Hoping for the demise of man, and being ashamed for it.
Wondering if I will ever know the answers, wondering if I did in some other time, if I will in some other time – wondering if I already know the answers…
Feeling small and insignificant in the cosmos, and loving it.
Wondering if there are others out there – knowing there are…
Wondering what my part in all this is, afraid I may already have glimpsed the answer.
Scattered and spinning are my thoughts.
Expectations fail me; my own.
Loneliness and grief visit me; my own
unbidden, that of others:
For I cannot not feel them.
Frailties of the body and spirit
beat me down; my own
injure me; that of others:
For feel their anguish I do.
Hope emboldens me; my own
enlivens me, that of others:
For that light is cast outward.
Love and compassion warm me; my own
enrich me; that of others:
For we are all connected,
on different levels;
to different purposes and ends.
For life is not only one thing,
or another; it is all things:
It is more.
In each darkened teardrop,
within the watery veil
I see myself reflected;
a ghost with tales to tell.
Shadowy and light – a collage of both;
the juxtaposition of beauty and dread,
weave to complete the picture;
paint the colors the day has bled.
Yet beyond the tears of sadness,
past visions of blue-gray pain,
lies brighter memories…
in my images of the day.
E’en when twilight falls;
and shadows fill the night,
each darkened teardrop disappears,
yet… I can still espy the light.
THE NIGHT NASTIES
It is late, or early; depending on how you look at it.
You are lying on your bed… perhaps staring at a pattern on the ceiling; glowing red from the light cast by the face of your digital clock. And maybe you have the TV on, the volume low… a semblance of company… a feigned human presence. Or the radio, instead.
You lie quietly, and you begin to feel that white-hot pulse… it feels like it burns brightest in your head and neck; a separate entity from the organ, that is your heart. Then finally, the heart kicks in… a counter-beat to the pulse; pounding against the bone of your ribcage. Your breath, to your ears, sounds as if it is rushing through a tunnel. Your still body tenses.
And then they arrive… the “Night Nasties,” the demons that rob you of sleep and sanity. Just one, at first. It scampers onto the stage behind your forehead; speaks its few lines, then scurries offstage. And another hurries to take its place. They might even approach in groups of two, or three… quickly utter their disturbing words and depart. But there, in the background, they congregate… and they are rehearsing their lines… for the next act. And their garbagy spewings, like nimble fingers, abrade and gouge in the darkness backstage. You can’t hear what they are saying, but you feel them; flaying strips of your reasoning away. And they just keep coming… Auditioning for a part – in the lunacy.
After a while, you are unable to concentrate. You cannot hear the “Night Nasty.” You are aware, only, that it is gesticulating wildly; trying to get your attention. It is just as well, this one has taken a turn on the stage inside your skull already. You can finally sleep.
You slip under the gray cover of slumber… and… then… the nightmares begin.
My words… read, sound, speak no different from yours; are they foreign to you?
I respond, feel, think… reach for you – extend myself.
Can’t you hear, feel, perceive my presence?
Are you intimidated, afraid, wary… do you sense an otherworldliness in me you do not possess?
I feel it in myself, and always have. It is a blessing and a curse. Yet, it is what has shaped me, formed me.
But do not let it distance you from me. I feel what you feel – and more – I feel my own strangeness and alienation.
But do you not realize that my own foreignness is my view of reality, that it discerns you as different, and therefore alien and strange, too?
What do you think when you *hear* me?
Do you really *see* me?
Am I as invisible as you make me feel?
Would it bother you, if you were me?…
Soothe me, with your caressing touch.
Chill me, with an icy zephyr.
Push me, tug at me, with your invisible hands.
Comfort me; your whispering breath at my ear.
On that torpid, muggy summer’s day, refresh me with your unexpected presence.
Sing to me, as you brush through the limbs and pine needles in the trees above me as I walk through the forest.
Howl your inconsolable mutterings as you wend your way around the corners of my house, tear through the alleys and cement structures of the city, bend your path around boulder and hillock.
Send me words spoken in secret in places I cannot see.
Share with me the recent past: the trace of perfume worn by the woman who, moments ago, walked this same path; the scent of a candle snuffed out wafting from the open window of a dwelling now dark.
Share with me the present: the balm of rain falling a few miles away; the musty tang of damp leaves on the ground; the scent of newly mown grass; the fragrance of fragile blossoms in new bloom.
Bring me whispers of children’s voices, lovers’ secret words, the tinkle of windchimes, the splash of a fountain, the babble of a river, the beat of the tide, the pulse of the city.
Play with me, as I sprint through the meadow, as I amble under the spreading oaks, as I walk the beaches of lake and sea, as I stroll down the country path ‘neath a canopy of stars and moonlight. Swirl the tall grasses. Lift the limbs and leaves of the oaks in a dance. Tickle the water’s surface – shattering the sunlight into fractured glints of silver. Spin the cooling night’s air ’round me; full of the flavor of earth, and memories of the day.
Propel me into the future on your journey forward – for you are ever pushing on, beyond – take me with you on your speedy flight.
Companion, messenger, friend… the wind.
I WANT TO GO BACK
To the days when what worried me the most was what we were going to have for dinner. And would I get to watch my favorite TV shows before I had to go to bed.
When the days passed by with no thought to time, only child-time: measured by the rise of the sun, and the rise of the moon.
When my room, my house, my yard, and my neighborhood were my world. And, school… But back then it held little importance to me, except for looking for it to end when summer breaks and holidays came.
Playing ditch’um, and tag. Building forts in the trees; or digging them in a vacant lot, and covering the hole with canvas. Fashioning space rockets out of discarded refrigerator boxes. Play-fighting wars and battles. Throwing a blanket over the redwood picnic table in the backyard and “creating” a clubhouse. Climbing trees. Hunting for lizards and toads and pollywogs. Going to the drive-in movie, in my pajamas. Kicking around the neighborhood with friends. Sitting in the grass at night, and looking up at a sky full of bright stars, and the Milky Way Galaxy… when you could still see those things in a clear night sky. Going fishing, on a summer’s eve, with my family. Riding my bike, for what seemed like hours, but it didn’t matter, because I was “on an adventure.” Swimming on the hottest days of summer until my skin was shriveled, and my eyes blurry from all the chlorine…
I can’t even put a time frame on these moments, not a year, or what age I was exactly… or how long these activities I remember lasted when I was living them. They just are… there for me to reflect on. A spot of nostalgia. It happens every now and then, when I drive down the streets of the old neighborhood, as I did today. The air was hazy in the late afternoon light… and much of the old neighborhood looks the same, or I can make it so, in my thoughts with just a little mental tweak. And it all comes flooding back to me, compacted in a single feeling. Sometimes that feeling is a warm greeting; other times I simply want to cry with the realization of what passes too quickly, when we are too young to value it, and can only do so when it hits us in the now.
There is no going back… but every now and then, I’d like to.
A gray cold is seeping through the late afternoon, as I sit and gaze out through the chilled ice of my window. As I look out over the rooftops, my eyes settle on the ash tinged smoke pushing its way out of the chimney tops. The curling vapors partly obscure the faded and damp red tiles of the roofs.
Dead leaves of brown and ochre lay scattered on the ground below. Now and then they twist up from the ground, then drift off, urged by the invisible breath of winter. They are but castoff garments. Their former owners line the streets and walkways, and stretch their gaunt and bare appendages to the gray sky. They look vulnerable, naked as they are to the elements, but they are not. They are the sentries of winter.
On the street below pass two people, a man and a woman. Arms tucked against their bodies, heads down, shoulders hunched. The woman treads past the man, wordlessly. Puffs of frosty breath push past the man’s lips, but no sound. His breath obscures his features.
To what, or where will their silent pursuit take them? Perhaps to an inn, with a brilliant fire blazing in a stone hearth. They might enter, and gathered at a large wooden table would be their friends or acquaintances. Seated in heavy oak chairs the group would look up as they step through the door. A few might be smiling. Others are chatting, but stop when they take note of the arrivals. With a sweeping gesture to the table, they would beckon them over. Soft firelight reflects off the top of the table where a feast is spread, and steaming mugs of a dark brew await. The man and the woman nod to their friends seated around the table. They then sit down, and as if never apart commence in familiar rapport.
And yet as I watch their retreating figures do I wonder if they might not be going elsewhere. It is likely they are not together at all.
Feet cold and wet, her wrap grasped tightly round her frame could she be secreting herself to a lover? Perhaps he is waiting for her now, eager for her to arrive. Deep red wine, and silken sheets warmed by the fire near the bed wait with him in the second story flat. He is listening for her approach on the stairs. He then walks over to the fire and looks into the mirror above the mantle. He tells himself to be patient. It is difficult; he is so keen to be with her. As he waits, he thinks about the love they share and it comforts him, stays his restless feelings.
Or could he be the lover?… This man with his hands dug deep in his pockets, his head bent; seemingly not associated with the woman whose stride puts her slightly in front of him.
I will never know, it is not meant. That knowledge is theirs only, as it should be. I am just the stranger looking on, unseen. Warming my solitude with mental pictures of what may be.
The street is desolate now as I watch. Gone each to their destination, the man and the woman. And only the walls of their dwellings will know if they are present or elsewhere.
Gone now, too, is the dancing sparkle of silvered sunlight on leaves. Gone is the warm blanket of golden sun on streets and grass, on this day of winter. They are but a memory, of a past season.
But in that reflected firelight on the table in the inn… In the tall narrow glass of deep red wine, illumined from the fireplace by the bed… And in the hearts of unknown lovers… Dances the sparkling sunlight, and it heeds not the season.
Would that I were at the inn gazing into the fire, my hands round that warm mug of dark brew, the voices of my friends at my side. Or mayhap slipping neath those silken sheets, my lover at my side, the glittering red wine within my grasp.
But I am not… maybe tomorrow. Maybe.
all poetry and prose – copyrighted ©