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Support for families dealing with cancer and other serious illnesses (Part II)

Started by Angela Wright · · 👁 31 views · 3.6K replies

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Participants Angela WrightTaylor Jackson14Edward Grant3stormytinker4restlessowl3Rachel Wood27silvercanyon7goldencrane3neonheron32Gregory Stewart4Brandon Lopez6copperbison4driftingsurfer14feralsurfer72Sandra Carter50Linda Patel21Maria Hughes67Nicholas MyersLisa Lopez75Bradley Scott2Kyle Lee7velvetmoose9Nancy Leemelloworca6 …
Gary Thomas13 Gary Thomas13 Member
13 messages
joined May 2014
#341 ·
Carl Kern66, things aren't any better over here either... Dad's completely checked out. He just stares blankly into space—doesn't react to anything. He spends all day lying there, and the only thing he actually does is fight us when we try to lift him up to feed him or give him some pie... he just wants to lie still and keep turning over in bed. We've been managing to get food into him through a syringe—basically just pureed oatmeal instead of mush—doing about 6cc at a time via injection. A big syringe doesn't work. Digestion and bathroom stuff seem fine... most of the time he's just sleeping, and if he's restless, it's just because he's struggling to drift off... We're using patches and ointments that seem to help with the pain... Just a few days ago, he could actually say a few words! He was agitated and couldn't sleep a wink... now it's the opposite. Nothing comes out, he just stares off into the distance and sleeps constantly... he only reacts if you give him a little pinch or something. When I try to feed him with a spoon just to see, he clenches his teeth so hard I won't even risk putting the spoon in his mouth... We finally made it to Mayo Clinic today to get a head scan and see if there's any way to make him more comfortable...
cosmiclynx14 cosmiclynx14 Newcomer
2 messages
joined Apr 2012
#342 ·
Hello everyone... I am deeply saddened to hear that your loved ones are struggling. I’m wishing you all so much strength as you navigate this fight..
My dad went in for a CT scan today—just a follow-up—so we are currently waiting on the results. He still has four rounds of chemo left before he undergoes another round of testing..

If only there were some kind of magic formula to find peace of mind during moments like these...... 🙂
Sandra Moore6 Sandra Moore6 Newcomer
2 messages
joined Jun 2009
#343 ·
I’m looking for some insight or anyone who’s dealt with this before: what actually happens when a HER2-positive breast cancer patient can’t tolerate any of their prescribed therapies (like Herceptin or Anastrozole)?

My mom is reacting incredibly poorly to the treatment and I’m honestly getting scared. She’s going to be nearly a month and a half without taking anything by the time she sees her oncologist again... I managed to get her an appointment at the Mayo Clinic for early June, but I'm terrified that something bad might happen in the meantime. Her blood pressure spikes and she gets these massive headaches and bone pains whenever she takes the pills; apparently, she feels better when she isn't taking them at all...

Does anyone know of any supplements I could get her to help boost her immune system? It was an adenocarcinoma in her left breast, but nothing else seems to have spread... Has anyone here had experience dealing with this specific type of cancer?
brisklynx51 brisklynx51 Newcomer
3 messages
joined Jun 2008
#344 ·
Carl Kern66, isn't it better this way? We're working in shifts—he’s "there" one minute and drifting off the next. Then he tries to walk—well, more like sudden lunges—and we all jump because his balance is shot and he's just so weak. He's mostly restless and would be smoking constantly if he could, which obviously would have set us all on fire—almost did once, actually.
He's still eating—if you nudge him—though I totally get what Gary Thomas13 meant about the teeth clenching 😬... and so on. It doesn't seem to hurt him—at least from what I can tell and what he tells us when he's actually lucid.
Oh, right—we got the follow-up CT results back, and they aren't actually terrible. There's some regression, but there's primary CA in the lungs and metastases in the adrenal gland. The takeaway is that chemo helped, but since it doesn't cross the blood-brain barrier—the metastases in the brain have gone rogue. So, yeah. It makes sense why I was asking the doctor about the brain and preventative radiation at the start—which is usually standard protocol—but it's NOT at Mayo Clinic (they don't touch anything involving the endocranium there unless neurological symptoms show up). But whatever, I guess it's pointless to stress over things you can't change...
I just hope the worst isn't tucked away somewhere in that messy brain of his. For now, judging purely by his expression, I don't think it is. That's the only thing making me feel even slightly okay.
Gary Thomas13 Gary Thomas13 Member
13 messages
joined May 2014
#345 ·
Honestly, looking back, I was actually happy just seeing him up and acting like an idiot. Now? He’s basically a houseplant—just staring off into space, totally unresponsive. He’s chill, doesn't even try to move unless we physically turn him... but god, when I try to feed him, he fights back with this crazy strength and keeps his mouth clamped shut... luckily he doesn't have many side teeth left, so I can just slide the tip of the syringe in and get some food in him—mostly homemade stuff I cook and mash up. It's not ideal, but it beats just being on an IV... We got him to the vet today to check his ribs, and tomorrow they’re gonna run some scans to see if there's anything at all we can do to help with the symptoms... I don't even know what's worse—when you're watching everything go south in real time and it just breaks you, or when he looks like this, like he's stuck in his own little world and isn't even here... then again, you never really know if he can still hear us and understand everything deep down inside... I'm choosing to hope and believe he can.
Gary Thomas13 Gary Thomas13 Member
13 messages
joined May 2014
#346 ·
Typo alert—typing this on my phone, my bad,
placiddrifter19 placiddrifter19 Newcomer
8 messages
joined May 2014
#347 ·
Hello everyone..

To be perfectly honest, my heart goes out to all of you for what you're enduring, yet I find myself truly awestruck by the sheer courage you all display...

It has taken me two full days to gather the strength to post here. My father was hospitalized the day before yesterday due to hypercalcemia. We had been monitoring his calcium levels ourselves—since he hadn't been prescribed any bisphosphonates, which is actually why he suffered that pelvic fracture—and over the last few days, his condition took a sudden, drastic turn for the worse. He stopped eating and drinking, became completely disoriented, and just a day before we headed to the hospital, he wouldn't even wake up. We called the local clinic, they came to check him, and then we ended up calling 911 twice. The first time, they turned us away. The second time, they finally arrived in the middle of the night and insisted on taking him to Mount Sinai, simply because that’s where our residency falls, rather than to Mayo Clinic, where my father has been receiving treatment for seven years. We tried desperately to explain to the paramedics that this was a complication of his existing illness and that we needed him at Mayo Clinic, but it was all in vain...
We didn't dare attempt to drive him ourselves...

Early this morning, the clinic finally issued the medical transport order for Mayo Clinic along with a referral for internal medicine. The woman at triage actually told us how lucky we were to have been so persistent about insisting on Mayo... Can you even believe it?...

Dad is currently in oncology. He is feeling slightly better today; he's on IV fluids and slowly starting to come back to himself..

Since his appointment for the new radiation mapping for his pelvis was already scheduled for Monday, they will handle that while he is here in the oncology ward...

On another note, I met with Dr. Miller on Monday. He was quite surprised by certain errors in the previous treatment protocols. He suggested we explore whether Gamma Knife surgery might be an option for the remaining 5mm metastasis, and as a primary therapy (given the lung involvement), he prescribed injections of medroxyprogesterone acetate (a hormone, Provera). He noted that this has shown promising results in similar cases... We are currently waiting for the injections to arrive from overseas since they aren't stocked locally here in the States.

The day before he was admitted, we had bloodwork done which showed a massive CRP level of 212, so we were all fearing pneumonia, but the doctors at Mayo insisted his lungs looked clear. He is currently being treated with Augmentin.

Wishing you all the best, stay strong!
Michelle Kelly4 Michelle Kelly4 Active Member
68 messages
joined Jan 2014
#348 ·
Hang in there, everyone... I know it’s tough...
Michelle Kelly4 Michelle Kelly4 Active Member
68 messages
joined Jan 2014
#349 ·
What's the word, everyone?
feralsurfer72 feralsurfer72 Member
33 messages
joined Feb 2014
#350 ·
Someone from the hospital just called my mom to let us know we can pick up the discharge papers, and apparently, the liver biopsy didn't show any signs of malignancy. Just to provide some context, Dad had his liver biopsy back on May 6th, but he was only given a temporary release at the time. His internist is on call tomorrow, so we’ll be heading over then to finalize everything. We managed to get his legs somewhat stabilized, though the swelling hasn't really subsided. Honestly, everything else is just falling apart; his abdomen is severely distended, he can barely make it to the bathroom, and despite the bandages and a cocktail of painkillers like Tylenol and Tramadol, the pain is constant.
Now I’m just sitting here, playing a mental loop of "what comes next" and wondering what this actually means for him.
If those weren't metastases in the liver, would there be other indicators of malignancy?
Is it even possible for him to have both pancreatic cancer and liver cirrhosis?
And does a pancreatic resection even make sense if there aren't metastases, especially considering he likely has cirrhosis—which is just my own deduction, but the imaging clearly shows significant liver damage.
Then again, it could be something else entirely. The reality is, he is visibly wasting away, and we are all reaching our breaking point.
We've been stuck in this cycle since February.
Michelle Kelly4 Michelle Kelly4 Active Member
68 messages
joined Jan 2014
#351 ·
feralsurfer72 is gonna be just fine. Don't you dare give up on him—just give it everything you've got...
Richard Sanders7 Richard Sanders7 Member
22 messages
joined Aug 2022
#352 ·
feralsurfer72, this whole waiting game without a clear diagnosis is dragging on way too long. It reminds me of when I was at Mayo Clinic with my dad back in Rochester; you just feel stuck in limbo while waiting for answers.
Linda Patel21 Linda Patel21 Active Member
108 messages
joined Feb 2014
#353 ·
feralsurfer72, I'm with Richard Sanders7 on this one. Honestly, they need to go get a second opinion. Sending nothing but strength to everyone fighting these illnesses and their families—I hope the pain and struggle stay as minimal as possible. I know how it feels; that sense of total helplessness just eats you alive.
Michelle Kelly4 Michelle Kelly4 Active Member
68 messages
joined Jan 2014
#354 ·
Hey everyone, what's the word?
Michelle Kelly4 Michelle Kelly4 Active Member
68 messages
joined Jan 2014
#355 ·
Nobody's chiming in... clearly something's up...
casualhound casualhound Newcomer
1 message
joined Aug 2006
#356 ·
feralsurfer72 said:Is it even possible to have pancreatic cancer and liver cirrhosis at the same time?

Hey feralsurfer72, I am seriously so sorry to hear about your dad. Honestly, I don’t even know what the smart or encouraging thing to say is—I just want to tell you to hang in there and give it everything you've got while you're in the middle of this fight. I totally get how much stress there is, the uncertainty, the feeling like your nerves are just about to snap.
Please, please try to take care of yourself as much as you can—though I know that sounds way easier said than done. Everyone tells me the same thing, but let’s be real, I barely get a few minutes in an entire day where my brain isn't spinning, let alone having time to actually do something "for myself."

Since you were wondering if that combination of diagnoses is possible, I wanted to share what I saw with my own dad—just based on my own experience with that kind of cancer.
With him, the symptoms started out as really intense pain in his stomach and back, plus he lost his appetite completely... basically, most food just didn't "sit right" with him anymore, so he started dropping weight fast.
As things progressed, the pain just became unbearable, the weight loss got much more drastic, and then his skin started turning yellow—and eventually, his eyes went really, really yellow too.
feralsurfer72 feralsurfer72 Member
33 messages
joined Feb 2014
#357 ·
My dear father has passed away. This song belongs to us both.

An immortal song.
I’ve always found that there’s a certain quiet gravity to the way M. Antić approaches his craft, much like watching a seasoned conductor lead an orchestra through a particularly complex movement—nothing is wasted, yet everything feels profoundly intentional. It reminds me of those slow Sunday mornings in Chicago when the fog rolls off the lake, blurring the edges of the skyline until you're left with nothing but the essential shapes of the city.

If you ever get word that I’ve passed on, just know I died exactly how I lived—unannounced and likely mid-sentence.
I’ve already given you my life story, dear.
Perhaps you’ll find yourself in that same position one day.
Suddenly, things have started to turn gray.

Everything feels like a heavy, sweeping fog clinging to my eyelashes.
There’s a faint, ashen trace lingering on my lip.
Have you ever truly sat back and given it some thought?
What does it actually mean to truly live?

It feels like snow melting in a warm palm—gone before you can even grasp the sensation.
It’s as if you grew up entirely on the open plains.
Don't worry...
Is there really anything to worry about?
It’s heavy, isn't it? Truly heartbreaking.
Is there any room for sorrow here?

Wandering through the wreckage of one's own imagination.
Climb toward your youth with everything you've got.
She’ll be waiting for you right there.
Beautiful, yet deceptively clever.

And so it lives!
It’s absolutely alive!
Don't spend your days nibbling away at life like a mouse.
He’s just blowing hot air.
Let the wind and the birds pass you by.

After all, even an eternity feels like a mere blink of an eye.

All of a sudden, there's a smile on everyone's face.
I caught a glimpse of myself in a mirror today, and I must say, the reflection was quite unexpected.
I've ended up with a face that looks like it was assembled from spare parts.

Out of nowhere: in certain corners.
Sometimes, you just need to let a few tears fall.

Trouble has a way of creeping up on you, right at your fingertips.
The years have a way of turning everything gray.

Suddenly, the whole world just shifts beneath your feet while you're mid-stride.
It seems to be getting narrower by the day.
And even the smiles seem to be growing a little more quiet lately.
And quieter, too.
And somewhat distorted, if I'm being honest.

And he’s truly living, quite remarkably so!

That’s exactly how I lived my life for a long time.
It’s been half a century, just like that.
I’ve spent some time traversing the centuries.

I’ll be the first to admit it: I can be a bit of a scatterbrain.
At times, quite the opposite.
And I never could quite find my footing, either.
I felt as though I were walking forever.
He went...

It’s essentially a matter of moving everything out from the front of your aorta.
The expiration date on this thing feels like nothing more than a polite suggestion rather than an actual rule.
And then you went and ruined everything.
What strange little wonders we find ourselves stumbling upon.

And don't you ever dare go imagining what life could be.
It feels like a frightened goodbye.
It feels less like an event and more like a permanent fixture, almost as if we’re living in a perpetual state of welcome.
It feels like a perpetual state of waking up, an endless cycle of just barely surfacing.

2.

And now, let’s finally get serious.
Take a moment to truly contemplate the weight of existence—what it actually means to live, and eventually, what it means to die.
And where, exactly, does a man vanish to?

I wonder what on earth he’s doing that keeps him perpetually distracted like this.

I wouldn't advise making any trips to the cemetery.
You just aren't going to get it.
Cemeteries are easily the most macabre part of any local carnival.
It’s a rather melancholy theater, isn't it?

Playing around with restlessness.
And my own shapelessness, too.
Don't you find yourself feeling that pull sometimes?
Maybe just take a little detour through the back alleys.
Are we truly ascending to new heights of intellect, or just rearranging the furniture in our own delusions?
In the near future?

I'll find a time to walk you through that later on.
If our paths happen to cross out there.

You know exactly what I'm going to do to you:
I might just have to break your toy for you.
What exactly is the name of that pain?
If you actually have the nerve to try.

I'm telling you the truth.
I'm just spinning a yarn here.
What truly matters, at its core, is simply what must be there.
You just haven't caught him in the act yet.
Well, you didn't exactly go looking for it.

Just remember: reality is always more real than anything else.
If you start adding a touch of the surreal to her persona, she becomes something else entirely.

You’ll know it’s me when I stop talking.
The eternal ones simply refuse to engage in conversation.

To outmaneuver wisdom itself...
I’ve always found that if you want to truly dismantle the art of listening, you simply have to master the skill of waiting for your turn to speak instead of actually hearing what's being said.

Grand conclusions.
They practically open themselves up.

After countless births, everything seems to change.
And then there are those quiet, trivial little deaths that just slip by unnoticed.
Once you finally come to terms with it.
Everything you just said was spot on.

One single life doesn't define everything.

Honestly, you should just come find me.
May I bask in your radiance for a moment?
I simply distill everything into a single thought.

And even the furthest reaches of our future.
She’s got a future ahead of her, clearly.
She honestly seems to be living in her own little world, convinced of her own greatness.
It is our own vote that shapes the future we will eventually inhabit.

And besides, there’s no such thing as an empty universe.

What we fail to realize, quite simply, is...
It isn't a matter of nonexistence, really.
The mere fact that the world continues to spin without us is quite a sobering thought.

3.

If you ever get word that I’ve passed away, just know...
I can't help but wonder what exactly this is all going to turn into.

Thousands upon thousands of vibrant, multicolored fish drifting through the water.
I can feel my eyelid twitching incessantly.
And eventually, the earth will claim me as its own.
Even the weeds will eventually swallow me whole.

And as for me, I’ll be busy tending to my own affairs during that interval.
To soar somewhere high above it all.
Just remember: there are no borders.
Let's just stick to discussing the current borders for now.

I’ll be sailing right above you as the dawn breaks.
The wind was slicing through the air, smooth and slick as a sheet of silk.
I shall broaden your horizons.
I suppose one could say that even a simple gesture like this carries its own quiet weight. It’s a polite nod to the passage of time, much like how I always make sure to tip my barista in Seattle before the morning rush truly begins.
And the visions of what lies ahead.
With the grace of invisible wings.

And like a silent pendulum, swinging without a sound.
Lost in a beautiful sort of limbo.
I suppose I shall have to speak for myself.
It’s much like that legendary championship belt everyone obsesses over.

Space is merely the velocity of the mind.
It’s like watching someone slowly unravel their own soul, piece by piece.
I’m essentially hovering in place, yet somehow, I’ll still get where I need to be.
I find myself drifting through the currents of time, lost to the passing years.

I think I’ll take a momentary reprieve from the side quests for a while.
Like a sprawling galaxy of stars drifting through the void.
Which ones have fused through pulsing?
I honestly have no idea what they’re playing at over there.

I think I’ll take a momentary reprieve from the side issues.
It’s much like those vast, endless stretches of old-growth forest you see out in the Pacific Northwest—limitless and overwhelming all at once.
What exactly are we talking about when we say things have "fused branches"? It’s one of those phrases that sounds poetic until you realize how messy the reality can actually be.
into warm embraces.

I shall find rest from the trivialities of this life,
much like those great birds,
whose wings have fused together,
encompassing the entire American sky.

I will take my rest from the secondary things,
like a profound love,
that finds its way to lips
long before the souls have even met.

Do you truly believe that my hand,
my knee,
or my head,
could ever dissolve into mere clay,
the root of a birch tree,
or simple grass?

Or that some tiny little secret,
or a fleeting, trembling fear,
might transform tomorrow into
silence,
darkness,
and dust?

You see, I am quite literally made of starlight.
I am composed entirely of light.

There is nothing within me that will
flicker out or fade away.

I will simply,
as if by chance,
on some random morning,
return to my own distant sun,
with eyes of pure gold.

I am punished for everything I think,
let alone everything I do;
I am suspected of being too tender,
and branded guilty
for refusing to quench love with hatred—instead, I feed it with new, greater love—
and refusing to extinguish life with death,
choosing instead to live in an entirely different way.

The final edges of infinity
are merely the beginning of something even more boundless.

Those who endure longer than the eternal
have no use for shallow knowledge.

Never waste your energy
asking how to survive,
but rather ask how to avoid dying
after all the ways one has already died.

4.

If word reaches you that I am gone,
do not fret. In every passing century,
someone accidentally mistakes me
for someone old and weary.

There is nowhere that holds as many people
as the depths of a single human soul.

There is nothing quite as different
as the things we consider the same.

If you search through the vast spaces,
you will find me unearthed from the wind.
I am in the water.
In the stones.
In every twilight and every dawn.

To be multifaceted as a human
does not mean to be fragmented.

I am shared with everything,
yet I am never torn apart.

And all these miraculous states,
these constant renewals of my being,
are nothing more than a vortex—
singular,
persistent,
and long.

Do you know what prophecies actually are?
They are merely the molds of past events,
the breathless repetition
of the same thing spinning in circles.

So why should we say goodbye?
What is there to regret?
If they tell you I have died,
you know better—I don't know how to do that.

Love is the only air
I have ever breathed.
And a smile is the only language
I understand in this world.

I only stopped by this earth
to give you a little wink.
To leave behind something behind me,
like a shimmering, fleeting trail.

Please, don't be sad.

I care so deeply
about remaining within you,
as something silly,
and strangely dear.

On nights when you gaze up at the sky,
give me a wink in return.

Let that be our little secret.

Despite the gray, heavy days,
whenever you see a comet
glow with a golden hue,
remember: that is still me,
flying and living wildly.
casualhound casualhound Newcomer
1 message
joined Aug 2006
#358 ·
Sending my deepest condolences, feralsurfer7 😢
🙂

And thanks so much for sharing that song—it’s absolutely beautiful.
cosmiclynx14 cosmiclynx14 Newcomer
2 messages
joined Apr 2012
#359 ·
feralsurfer72, please accept my deepest condolences... you really moved me to tears. I truly hope you find some peace in your heart and that these incredibly difficult days pass by as quickly as possible.. 😘
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#360 ·
feralsurfer72, I am truly, deeply sorry for your loss. 😢
Hang in there and try to find some peace; you did everything humanly possible. Your dad is in a much better, happier place now, watching over you.

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