Thursday, December 28, 2017

Boatload of news, results, and my "team" grows

What do you want first, bad news or bad news?

Northshore Road, along Lake Mead, Nevada...
open desert, fresh air!

More and more results are piling in.  I was enjoying a nice lull between tests, family still in town enjoying the warm desert air. Today, a flurry of phone calls. First from "my" nurse at the Breast Care Center, to reiterate the news from the oncologist. Then I  go online to see the actual results of the biopsy and, for the first time, a bunch of medical terminology I couldn't decipher. But malignancy, metastasis, rapid mitosis rate, and other nasty words are in there and I know what those mean.

Then a phone call from "my" advocate who referred me to a bunch of resources and explained how my team will be working together. Happy to see that she took a bunch of notes, promised to coordinate with my oncologist and set me up with "my" specialized breast surgeon. Wow, surgeon. I admit that made my heart jump...that scary knife... I am also promised a bunch of literature; I love reading. She was extremely capable, compassionate and caring; also a survivor.

I apparently lack proper affect and have not yet fully panicked...or at all, at least on the outside. Oh I am well aware of what has happened on this very short month, can hardly believe it has only been 30 days since I got the fateful x-ray that set this weird ball rolling.
Every test result leads to a new path and new possibilities. Some doors open, others close, but I have to believe that at some point soon (very soon?) I will get to the beginning of my healing journey; the start of the real fight. I have to believe that. And I have to remind myself I am still investigating, along with my very capable and growing team. In my sleuthing team, I now have a general practitioner, an oncologist, a breast care advocate along with an entire Breast Care Center, and this next couple of weeks I will meet "my" surgeon.
Things are actually progressing quickly, medically speaking.

State of mind these days

Sittin' pretty in the quiet Muir Woods
late July 2017

They are REALLY tall!

All so foreign to me, all this sickness...did I tell you I walked near eight miles in the bliss of the Muir Woods just this past July? late July. And three days ago I climbed a tiny little hill in Lake Mead that left me wiped out for two days. New life, for now; silently visualizing the day my old life will be new again, perhaps with some adjustments, but I will fight for that future like a lioness.

Atop...some very short hill that kicked my butt



I am told there will be plenty of time to freak out, perhaps a bit later. Right now I calmly (anxiously) await the next test, the next result, the next tweaking of my journey. Three more tests scheduled for next week, three more pieces of the puzzle. And then I am calmly (desperately) waiting for the day I can take that first dose of whatever cocktail of powerful drugs that will rightfully kick my ass, make me weak and vomit, and hopefully in the process also get this "thing" to stop eating at me.

Right now the cancer is quietly spreading and there is nothing I can do, not until I am given something! something to make it stop munching my bones, even quietly recede. Right now I am so desperately helpless.

Monday, December 25, 2017

It's Christmas! and I have Cancer

December 25 2017

We decorated!
We don't have THAT many cats, do we?

Three days before Christmas I saw the oncologist again and, after studying my latest blood test results, he told me that I probably have breast cancer, spread to the nearby lymph nodes and bones. No results from this week's biopsy yet so he, of course, orders more tests.
PET scan, liver biopsy, bone density scan and then we had this interesting exchange:
"I want you to have a brain scan, just to make sure there isn't anything there," he says.
"I'm sure you didn't mean that as an insult," I replied jokingly.
He smiled a little but didn't laugh, he's tough to make laugh. And then he said it:
"You know how serious this is, right?"

Yeah, I know. It's almost Christmas, and I have cancer. And there is no hiding it, no sweetening the deal; simply MY new normal. I am trying to talk a little about it every day at home so it becomes not such a huge deal. There are more treatments now...it can be fatal pretty quickly...they can lengthen my life...which has probably just been cut shorter. Reality is reality. I am at peace with that.

That night he calls me at home, still at it late in the evening, bless him.
"I got the biopsy results" pause "it is breast cancer"

boom!

I wished him a Merry Christmas and thanked him for calling.
Our Christmas tree well out of the way
of the six cats we don't have

Thought twice about posting on Christmas about cancer. But it isn't just me, it is for thousands of people all over the world who are struck by this snake, trying to be polite to everyone and hiding their symptoms and their pain so other people don't feel uncomfortable, so that they don't pity us, treat us differently. "Us," the cancer people.

I do wish my snake had rattled me a warning, the mass on my breast too diffuse to identify, no lumps to feel, the pain in my rib cage too easy to numb with ibuprofen. I'm active, stuff hurts all the time. The snake bit me alright, and it didn't rattle. Bastard.

My new normal won't define me. I will keep on living until the day I die, just like before the snake bit me. This thing doesn't know ME, it won't own me, I will fight it until my last breath. Don't feel bad for me, feel bad for cancer sufferers who don't get a chance to fight.

It's Christmas Day. I have cancer.
Managed an awesome meal
Mami at the head of the table

Thursday, December 21, 2017

My first biopsy and shout-out to the medical community

Wednesday, December 20 2017

I confess I am nervous. Despite having lived a full and very physical life and having had my share of bumps, bruises, sprains, strains, gashes and falls...I have never had surgery of any kind. Still have my tonsils and appendix, even my wisdom teeth. I have scars alright, a bad one on my elbow from a bicycle fall, one from a kayak scraping my leg as it fell from the roof of a houseboat en route to the water, a nasty one from the rope of said kayak wrapping around my arm on the way down. Others, but those are the most exciting. But no surgeries.
Certainly I have never had a needle perforate my skin and take a piece out, which is exactly what I'm about to allow...reluctantly, nervously. Perfectly calm on the outside though.

Impressive building, I arrive early, too early as usual which means I have to wait longer. Sign in, wait, check in, wait. Among the chatting patients, the inane day television shows, and the yelling of names, I sit and am able to meditate myself into a nice walk on the beach. I can hear the waves, smell the salt...

MARIAAAA!
Oh that's me and apparently two other women, but the last name (mispronounced again) confirms it's my turn.

I meet my wonderful, polite and very capable tech, and I mean that. Undress please, from waist up, robe opens to front, your locker, bring the key, follow me...

I am "prepped" and made comfortable and I can see the inside of my breast on the monitor in front of me, now THAT is cool! Few minutes, doc pops in, explains the procedure as she works. Bit of a sting when lidocaine is injected, a bit like at the dentist. Then I curiously watch as a needle penetrates my breast mass, then my lymph node, something clicks every time the biopsy needle closes around a tiny bit of "me" and pulls it out. The needle leaves a track like a ski on the fresh snow.
Now I'm skiing down the dry Utah snow leaving tracks...CLICK! Back to the monitor, almost done.

Those tiny bits of me go into a bottle for the lab to examine. I look at them, tiny pieces of pink, like little worms floating in lab-friendly goop.
Some bruising to be expected, instructions to ice the area all day. I dutifully spend the day freezing my side every 40 minutes, blanket and knit hat and all.
Close your eyes if you're squeamish, here is a photo of my axilla (underarm) lymph-node pokes. Why show it? Because despite not feeling too much pain or discomfort during and after the test, my body knows it has been poked. I can explain it all away, then I see the bruises in the mirror.

ICE! please

They leave a titanium chip inside me, where the mass is located, as a marker for future biopsies or surgeries. Wow! I'm chipped! just like my dog. Bee-line to the mammogram, just a gentle two-side view to confirm placement of my brand new titanium chip. Yep, I can see it on that monitor.
And that's it, now to wait the results, they will call, 2-5 business days. Dawns on me Christmas is next Monday, just a random thought.

Thank you everyone!

You hear a lot of bad things about the medical community so I want to thank everyone so far for being perfectly professional, eager to help, comforting, gentle, caring and generally making this harrowing day-to-day fright so bearable.
You would think that they would be callous, mechanical in handling their daily conveyor belt of sick people. But they aren't. And at least I am treated like I am their only patient, right this minute. Kudos to all of you. Merry Christmas to all of you, peace and love.

Sleuthing the culprit, more questions, more waiting

Monday December 18 2017

Today I had the PERFECT complete denial day! You know those stages of grief? I'm skipping over the "angry" because I need all that energy channeled into a positive mind-set, I had a two-minute "why me" but answered quickly "why not! me", no despair so far, I conveniently and efficiently package shock and disbelief with denial because I tend to not be so dramatic. Mostly I titter-totter between "a laughable medical mistake (aka denial)" and "let's get on with the chemo already (acceptance)."

I AM anxious, very eager to get to the treatment options part...but first I am forced to be patient and getting strangely curious at sleuthing the culprit of my maladies. Detached, almost, like I am investigating a medical mystery in someone else's body. And yet the bruises and the pain and the stress from test after test after test are very much real.

Today I had a great denial day! Walked in the park under chilly sunny skies, caught up on house chores (seem to take longer than I used to), napped a bit (seem to engage in this a bit more than I used to) and generally tried to keep myself calm for my first Oncology visit on Tuesday.

I did get results for my last CT scan which shows a large heart (aaaah, how sweet) and "unremarkable" bladder. I guess that's better than the other way around?! (that was a joke)

Tuesday December 19 2017

Finally! Answers will come pouring in today, I get to meet "my" Oncologist, I get to know what I have and how to fix it.
Well, not so fast apparently...
I started the day early by going to my dentist for routine cleaning and the only reason I mention this is because nobody would clean my father's teeth on the last year of his life. They just simply refused him at the door. He had a stroke in 1998 and survived for 12 years, but on the last year, no dentist would clean his teeth. So as long as my teeth are clean, I'm cool for a while.

Anyhow, afternoon comes and hubby and I head on to the Cancer Center. Cancer. Center. Cancer. Building being renovated, cracking paint and partially demolished corners and crevices here and there. I notice a lot of things now, more than before. Most patients are older than me with few exceptions, many on oxygen, wheelchairs, walkers...I consider myself lucky as I stride strongly to sign in. I am one of them, I will be on a wheelchair too perhaps someday, I am them. I am just like them. I am that lady. And then the usual, wait, fill out forms, wait, wait more past the appointment time.

Wonderful meeting with the Oncologist...except still no answers. Fortunately he has the same sleuthing instinct and he is intensely interested in everything I have to say about symptoms and such. I'm impressed. We speak casually of this disease, symptoms, causes, my husband quiet and panicked. Aaaand, no new answers, just more questions. The oncologist is narrowing the diagnosis down but no definitive yet. Finally scheduled a PET/CT scan to be done in January 2. That test shows the extent of the spread and possibly the most active part of the cancer cells so they can pin point and treat the origin.

More blood tests, this time for a specific protein that will either eliminate a possibility or confirm another. Tomorrow a biopsy scheduled of a mysterious mass on my left breast and an enlarged lymph node. Cells to be squashed and examined under a microscope.

Test, wait, test, wait, test...

Monday, December 18, 2017

Life changes to accept and embrace

Invincible!

rappelling down a cliff,
it just "looks" dangerous
There was a time when I could do anything I wanted. Young, physically fit, fearless and adventuresome, I would welcome any challenge in nature, embraced a little recklessness and came out of it all unscathed.
I rappelled down cliffs, swam across the Colorado, kayaked rivers, slept under the stars in the forest and in the desert, hiked up and down rocky washes in the moonlight, rode my bike for tens of miles in the desert heat... I climbed every mountain and hiked until my legs gave up...with a pack and a dog on my shoulders.

Changes

Just four weeks ago I hiked about 3 miles with the pibble at 8000 feet and split wood when I returned, worked on the cabin a bit and enjoyed a meal in the pines. This last Saturday I finally was able to breathe well enough to drive to the cabin, built a fire, collected a bit of kindling and thought about whittling wood...splitting wood to whittling wood, what a hoot!
a nice fire to warm up

the indispensable chestnut roaster


I managed to pick up a load of kindling
This past summer I built the last tiny corner support wall for the cabin, dug a 3-foot trench, poured about 16 bags of concrete (mixed by hand in a wheelbarrow), stacked some 40 cinder blocks and filled them with more concrete. I remember thinking then I better start acting my age because I did get a bit more tired and a bit more sore than the previous year.

But today is today and I have a busy and easy day. Ignore the pain in my ribs and spine, pack up and mail the last of the sales from my shop, go deliver some Spanish treats to my aunt and uncle, shop a little for Christmas dinner. I will take a big rest in between every task, maybe a nap in the middle of my day, but I will keep living my new life.

This is the last day before I see the Oncologist for the first time. I have questions about diagnosis, prognosis and treatment options that I desperately need answered. My head is spinning at times from reading test results and looking up information; I try to relax and keep on. Today is a distraction day before the most important day in my near future.
And although I don't want to think about that too much right now, I also have questions like: "will I live or die?", "how long do I have?", "is IT treatable?"
Yeah, that's serious sh**!

No doubt, my life has changed...just like that...

Friday, December 15, 2017

Bless the good days


at the park
Still waiting anxiously and fearfully at the same time until that first Oncology appointment. Next Tuesday! Until then I will catch up quickly on week 2 and move on to a very good day.

December 4-10, 2017

Another blur of a week, another MRI, more "things" eating my bones found in the results. Funny, I now log on to my medical app on my phone or computer every morning and await results to be added to my medical record. I continue to learn new terms and keep it all in stride.
Also a neg on my pap, finally a negative result! woohoooo! I thought the darned thing was everywhere. 
And then another phone call from my main doc's office completely contradicting the phone call I received last week with "orders" for more tests. Sweet. I spend the morning on the phone with very helpful phone clerks and nurses. Still frustrating, I'm trying to schedule everything as soon as I can and all my "orders" say EXPEDITED, which is a bit unnerving.

Made it through unscathed, I have an appointment with "my" Oncologist scheduled and a biopsy of a suspicious dot on my left breast (I'm guessing from over-squashing the poor thing). Just take the darned thing, quick way to lose 3 lbs. Which reminds me, I am for the first time of my life attempting  to maintain if not gain a little weight to give myself a cushion for things to come. Wow, it is true, "there's no ill wind that bloweth no man good." Maintain weight! YUMMMY

Friday December 15 2017



right in my front yard, good morning!
Yesterday, as I hinted, a very good day. Felt good, took an extra long walk in the park with the pibble and enjoyed this absolutely glorious sunny winter weather of the Southwest US. Occurs to me that I am noticing more beauty in my park. No longer do I look to the ground and pick up other people's trash. Now I'm looking up at the sun, laughing at my Alegria's antics and counting bunnies, birds, hare and quail as I enjoy the quiet of my nature refuge. 
and the roses just keep on giving

Thursday, December 14, 2017

Keep walking, keep hoping, keep fighting

Scrambled mind, scrambled life

I guess I should at some point insert a note about why I write this diary of sorts. First, it helps me to write down what's going on and second, I hope I help someone else by writing the day to day tedium of going through this experience.
I have read some cancer survivor's books and some help. I am just pretending I'm walking down the beach with a friend and they just asked me "what was today like?"

Thoughts are powerful and I use my mind to go wherever I want, whenever I want. While my body parts are being sandwiched mercilessly by a rather large machine, my head is up in the mountains, finding another trail, watching the herd of deer hop by...ow, that hurt! Back and forth, between a very real and a suddenly surreal world and the ultimate refuge, my mind.
Everything seems scrambled, in disorder; my mind jumps back and forth, counting sterile ceiling tiles, seeing that waterfall in the spring, another robe, another nurse, a pine guarded path...
All I can do is keep walking, keep hoping, keep fighting.

It is now Tuesday, December 13 2017

I will catch up with the second week momentarily, which blurred by in a dream much like the first week. But later today I have another CT scan, this time they want my suspicious liver, abdomen and pelvis. I have to quit eating 4 hours before the test, quit drinking 2 hours before the test, drink some 450ml of "oral prep" 3 hours before the test and another chug-a-lug of the same 1 hour before the test. Got that?
yum!
No jewelry, no zippers, no metal, no belly-button rings, no children, probably no dog except they didn't specify so maybe someday I will show up with her and see what happens. Reminds me I need to get her a "therapy dog" vest...and teach her how to sit still...nah, will never work!


Exciting, it is not

Aside from the disruption in my life, the tedium and the waiting are already wearing me down. Another drive across town, more forms, signatures, waiting rooms full of sick people...like me?! No robes this time, just an IV to enhance the contrast in this CT scan of my belly. Another consent form, this one says that the IV may kick my ass later, and it sure did! I need to get tougher.
I lay on the table, a mechanical voice tells me to breathe, hold my breath, inside the noisy tube again. Over before I can go for a decent mind-walk in the woods.

As I get home, the lack of food, the IV thinguie and the "oral prep" are all hitting me at once; I feel bloated like a penguin in the winter, shivering under a blanket and double sweats, trying to think it all away. This is only a test...I need to get tougher.

Wednesday, December 13, 2017

Accelerometer...ON! Something is eating my bones

Week of November 27th to December 3rd

First week, a blur

I am still wondering where that week went. After that doc ruined a perfectly good morning, I went to pick up my prescription for the coveted antibiotics and went home without forgetting that very afternoon I had an appointment with "my" doctor.
Before today I confess I sneered a little when people talked about "my doctor" this and "my doctor" that...I apologize.
As soon as I had his name I checked him out online, of course. As long as he was older than most of my cats, I figured he knew what he was doing. Flying totally blind, what an adventure.
Facing the music, new adventure

Visita al doctor

"My" doctor reviews my x-rays and first CT scan and asks me some medical history questions, only to find out I have no medical history. I try to explain I was just hiking in the mountains the previous week at some 8000 feet with a young energetic dog, and then I split wood just because I enjoy it. And then...
No, he doesn't care about that, only about disease. I have none...except for "whatever is eating my bones" his words, not mine. Something is eating my bones, my 7th rib seems particularly tasty, then my spine--wait! did you say my SPINE? you stay away from there, I need that.
I'm sure I am looking dumbfounded again. This can't be happening.
The nurse will help you with the referrals.

I'm given a checklist, four or five referrals for places I have to call. They don't issue you a personal medical butler/scheduler/arranger of all things, by the way, you have to do all the work. This one you call...this one will call you..., this one anytime, go give blood, that's here, get a pap, that's there, get an MRI, get a colonoscopy, give more blood...press 1 for EspaƱol, press 4 if you'd like to take a survey after you're done pressing buttons, press 2 to move on to the next agonizingly long recorded message...

Tests and tests

So, remember this is only the first day of my adventure. I'm apparently already sick, so sick that I need tests, lots and lots of tests. Okay, fine, I've always been good at those, straight A student and all...
Next day to the lab to give blood, 8+ vials, they take. I sign up for the mobile app, oh the modern world. Now the results are on the palm of my hand on demand. I remember how frustrating this all was for my father who suffered a stroke and was perpetually confused and angry; I guess I will share that story sometime.
So a week goes by and I have been instructed to disrobe, wait, talk, robe, wait, listen, disrobe, say ah, say ow, wait, wait, call, listen, eat, not eat, disrobe, breathe, hold your breath, arm up, hands down, lie still, hold breath, breast against the machine, look at me, arm up, relax (ha!), chin up, chest out, wait, wait...
Bloodwork, MRI, mammogram, more blood, CT, another MRI, pap, tiny more blood, I think that's it so far. It's week number one.

I want to leave my various body parts on the examination tables and let the nice nurses and techs handle them at will. Go ahead, I'll be at the park walking in the fresh air with my dog, be right back to pick them up!
"They" like my cheery attitude, apparently not hearing the screams inside. And amazingly, my body sits still there waiting patiently for the next instruction...to wait. All the machines look frightening, big, mechanical, why can't they make them look like trees?
Not so long ago, a totally healthy happy camper

I look up everything online, MRI, CT scan, elevated liver enzymes, low hematocrit...everything. The Mayo Clinic website becomes my best reading material. With a little physiology background I can understand almost everything and nothing looks good right now. I looked it up.
1. Diffusely abnormal marrow with an expansile lesion involving right
seventh rib. Differential; metastases, myeloma, or lymphoma/leukemia.
2. Mediastinal and left axillary lymphadenopathy.
3. Suggestion of hepatic iron overload (incompletely evaluated).

I refrain from self-diagnosis, pending more results, more tests. Got to say, the doc is right on my case, inserting comments and ordering follow up tests almost as soon as the results hit online.

Tuesday, December 12, 2017

Do you have an Oncologist?

Wednesday December 6 2017

They "popped the question"

Do you have an Oncologist? said the voice on the phone...
Of course I do! I thought, aren't those like pet rocks? Everyone that grew up in the 80s has a pet rock! Whaaaat? was my mind thinking

"no" I said quietly, dumbfounded

But that was last week, let's back up a bit to exactly 2 days before my 58th birthday.

Monday, November 27

The price of antibiotics these days...

I was fighting a chest congestion and low-grade fever for a few weeks and upon the third or fourth recurrence I decided to visit the doc's office and see if I could score some antibiotics. Two days before my 58th, I reasoned I was finally getting too old to fight infections by walking in the park and ignoring the fact that I may be sick. Before you criticize my strategy, please know that ignoring my body's silly complaints has worked all my life. Eventually I return to the perfect health I have enjoyed.

So I walk into the clinic and get my vitals checked (don't they make a person take off their shoes before weighing? sheesh...). They swipe a magic wand across my forehead and decide I don't have a fever at all; my magic wand at home says I do. But whatever, get me that medicine please and I'll be outta here.

Not so fast, they listen to me breath and send me to get a chest x-ray first, since I'm complaining of chest congestion. Simple chest x-ray, robe is too big (or I'm too small) and drags behind me. Back to "my" room for results. Antibiotics, please, and I'll be out of here.

Nobody likes to hear these news on a Monday morning

With that three minute evaluation and a chest x-ray, this clinic doc who has never seen or heard of me before throws out the "C" word. I'm looking at him incredulously, I'm sure. Trying not to. Felt like saying, "cool, can I NOW have some antibiotics?"
But I'm just sitting there. Listening.
...abnormal chest x-ray...blah blah...some anomalies...mass around the 7th rib...possible cancer...blah...need CT scan of chest...check on your insurance...do you have a regular doctor...(does he mean one that actually provides antibiotics for a recurring infection?)...

I'm helpless

Next I'm given a neato printed folder with lots of phone numbers, cool brochures, welcoming messages and other stuff I haven't gotten to yet, and I love to read. The CT scan done right then and there and I even get an appointment for MY assigned doctor, later that day.
I can't see my actual radiographs, of course, nor the suspicious spots on my bones. That spot on my rib they talk about did hurt a bit ago but I do so much physical activity (in the form of home maintenance and improvement, light construction, occasional splitting wood, towing a happy pup around the park...) that something hurts mildly nearly all the time.

I'm helpless to do anything except what they tell me to do. Except I start reading a ton of stuff at the Mayo Clinic website.

Doc's visit coming up. More fun stuff.

So what's up with the rattlesnake?

Monday November 27 2017

Rattlesnake story

There I was...surrounded by ferocious diamondback rattlesnakes hissing and rattling and slithering around me with menacing strikes...wait, that's NOT it, I get carried away sometimes, let me try again

There I was walking with a few friends on a trail in the Kolob Canyons, the (then) little-known North entrance of glorious Zion Park in Utah. My faithful mutt Cisco was with me, always with me. As I recall, we were going to hike down to the tributary of the Virgin river and spend a night or two. Cisco walked a few feet in front, irresponsibly off leash. What did I know, I was young and stupid then.

I heard the rattlesnake before I saw it, perhaps 6 feet in front of me, perfectly camouflaged in sandy patterns in the middle of the trail. Everything accelerated from that point. The thing was rattling furiously because Cisco had just gone past it completely unaware. We screamed, Cisco stopped, he started to walk back toward us...and IT on the path. I screamed NO NO NO NO!!!! 
Confused, Cisco stopped again. 
The rattling continued...
There was not much time to make a decision, if I continued to yell, my beloved Cisco would come to me and get a fatal bite. I yelled STAY! and in a fraction of a second I decided to hop two long strides, jump over the rattlesnake and save my dog.

As far as a decision, it wasn't very carefully reasoned but my thoughts rolled by like a movie, something like this: 
either I go to my dog now or my dog gets bit and dies
if I jump over the rattlesnake I may get bit or not
if I get bit I either live or die

I wasn't fearless, but fear didn't grip me motionless
I wasn't unthinking, but action rendered forethought irrelevant
In another moment, everything could have changed
In that moment, I took charge of my very immediate future

Since then, in my life, I have "jumped over rattlesnakes" using the same simple reasoning. Reality forces us to make decisions we don't like sometimes and, having both feet firmly planted in reality, looks like the most daunting jump over the rattlesnake is now in order. 

So what's up with the rattlesnake?

Monday November 27 2017 Rattlesnake story There I was...surrounded by ferocious diamondback rattlesnakes hissing and rattling and slith...