Friday, December 28, 2018

Day One of MY New Year

New Superhero?!

It's Captain AFINITOR!  My new chemo-not-really-chemo but comes-in-a-chemo-bag pill. With my cancer taking a plateau and threatening to go back to the dreaded "progressive" mode, my Onco decided to change course. I am now attacking the evil M-TOR, another cell proliferation and growth pathway just to battle the beast in a new and improved way. Yeah I didn't understand a word of that either.
Along with the Afinitor (generic: everolimus) daily pill, I am now receiving my new estrogen blocker Faslodex (generic: fulvestrant) as a monthly shot on the "hip." Now I know that the nice nurse wants to be proper and all, but it's the butt, trust me, I have a Masters of Science in Exercise Physiology and one my fortes was an uncanny accurate knowledge of anatomy. The double shot is definitely on the butt, one on each cheek, once a month.

So far so good

I just literally took my very first Afinitor pill, no side effects yet! LOL Here is a picture of the complete sheet of instructions, cautions, dosage recommendations, chemistry, studies (with some cool graphs), more cautions, horrible and mild side effects with percentage of probability, drug interactions, foods not to eat, resources for dealing with all that and oh, so much, so much more... Looks like nearly for sure I will be getting some mouth sores so I am going to ztart p'actithing zpeeking wit a zlightly thoft tongue. And rinsing with saline water, and brushing with Sensodyne, and drinking smoothies.
Makes for awesome reading, honestly, let me know if you want to borrow it to cozy up by the fire with the 2x4 foot sheet of tiny print. And the most amazing thing!: it folds to a mere 1x2 inch thick-ish bundle. Wow.
So anyhow, I am on the way to a new and exciting adventure. To quote Van Halen, "might as well JUMP!" that next rattlesnake and keep going up the trail.

Speaking of hiking

Awesome hike with family this last weekend, nearly empty desert, cool and sunny and all the desert plants just loving the winter. Saw some wild burros, jumped over a stream, climbed some sandstone, followed a neat narrow trail up Sandstone Canyon and took major gulps of the freshest cleanest air in this beautiful land. I leave you with this desert awesomeness:
Looking up Sandstone Canyon, Spring Mountains, Nevada

Thursday, December 13, 2018

Looks like a change in course is in order...

Rugged Trails

When hiking, as in life, sometimes you have to change course. I personally like steep and rugged trails but only because they are less crowded and I enjoy nature in silence and peace.
My very recent PET scan showed some areas diminished and some new "nodes" as we call them. This means that the cancer that has spread is now full of life and spreading on its own. How very rude of it. I guess I'm about to embark in a slightly tougher trail.
Me, doing my best impression
of a cancer patient...waiting for
my PET scan and sipping
on Mocha flavored Barium, yum
Since my tumor markers had been creeping up slowly, we (my Onco and I) sort of knew this may happen so we already talked a little about either changing magic pills or going straight to chemo. I guess I will know in about five more days after I see him. Is the suspense killing you? It's sort of taking a toll on me too. But we have options and that's what's important. Can't wait!
I got a PET scan for my birthday, maybe I'll get a new magic pill for Christmas, what else does a girl want?!

The images aren't really clear this time, they don't look any different to the untrained eye than the last PET in July, and the interpretation even less clear with a conclusion "mixed impression" which means nothing to me. So I must wait for the wisdom of the Oncologist. All organs still clear, apparently my particular cancer likes to munch on bones. Stay tuned.
New "nodes" appeared in
my spine, hip and femurs
PET 12-2018

Fun and Art

Meantime, I made Christmas cards out of some of my artwork. That was fun! Ever had a fight with a printer and won? No...me either. They are s'posed to print all sizes and cardstock and etc...but they just don't. They say they have paper jams and they don't, they claim the paper tray is empty and it isn't...I can't think of a more irritating piece of equipment in my humble home office. Sigh.

Here is an image, cool huh?:
Nature's Peace
And since my PET disagreed with my own feeling like a million bucks, I decided to purchase and spread 10 tons of rock in front of the house with my ailing hips and femurs. Shoulders too. I'm a little tired but no ill effects thus far and my house looks great with new rock in front!



Sunday, November 25, 2018

Gracias a la vida - Thankful for life

Thanksgiving come and gone

Never thought I would have so very much to be thankful for as this year. Coming up on one year survivorship anniversary.

Gracias a la vida

...is one of my favorite songs written by Mercedes Sosa and a version sung by Joan Baez. My favorite verse goes like this:
Gracias a la vida que me ha dado tanto
Me ha dado la marcha de mis pies cansados;
Con ellos anduve ciudades y charcos,
Playas y desiertos, montaƱas y llanos,
Y la casa nuestra, nuestra calle y patio
Translation:
Thanks to a life that has given me so much
It has given me the march of my tired feet;
With them I walked cities and puddles,
Beaches and deserts, mountains and plains,
And led to our house, our street and patio
Here is a YouTube video with both author and singer:
https://www.youtube.com/watch?v=rMuTXcf3-6A 
Mercedes Sosa and Joan Baez live

And many more

On my last visit with the Oncologist we discussed my finally! stable white blood counts, creeping tumor markers and discussed options. But first, oh joy!!! I am getting a PET/CT scan for my birthday! How wonderful to actually see where the beast resides these days. There is no other way to find out, there is no pain, no symptoms other than some tiny lumps on my lymph nodes appearing out of nowhere in the last month.
So to the scan we go in about a week or two, have yet to schedule.

Options, options...there are now "second generation" magic pills which will give me probably another easy year or maybe more. Apparently the cancer, being as resourceful as moi, learns how to deal with magic pills after a while. So we change course and maybe take other magic substances. Then there's always chemotherapy, which my Onco wants to postpone until all the other treatments are exhausted. Will know more after the PET, I'll be sure to publish the awesome images here.

And feeling particularly good these days and being an eternal optimist, who's to say that research won't come up with something even newer in another year?! And I don't have to bloodlet weekly from now on! How joyful is that! First time in a year that I do NOT have a lab appointment weekly. I am freeeeeeeee...

Here's to science and a long(er) life, gracias a la vida, que me ha dado tanto...






Monday, October 22, 2018

My "noots" are tanking, I'm on a "cancercation" :-D

Ups and Downs

That's EXACTLY how the cancer adventure goes!
Last month my Oncologist dumped me because I'm on auto-pilot, that is, all is going smoothly. But that was last month...Oh and he didn't really dump me; every other month I see a very bright and capable Physician's Assistant who dispenses the wisdom of the day and sends me on my way.
My blood contents seem to be problematic, the chemo is killing my "noots" nickname for Neutrophils which are a type of white blood cells. My white blood cells are down too.
Apparently there is no magic pill to get those puppies back up where they belong. When my "hemes" were down (hemoglobin) I was able to take Procrit to spur my bone marrow into making more. Not so with the "noots." Nothing to do except to quit taking the poison.

This brings up an interesting thought, I WANT to take poison. I want to keep killing, or "managing" as we say, the cancer cells. Me! A short year ago I never wanted to take even Ibuprofen for headaches, preferring instead to quiet down, drink water and let them naturally dissipate. Sigh. Now I want my poison and I'm not allowed to take it yet.
So I have $11,585 worth of 100mg Ibrance pills sitting in my pill box. And now they want me to lower the dose to 75mg, which means another $11,585 this month charged to my insurance. I'm a bit nervous about that, don't want to get dumped.

Incidentally, my tumor markers were up last month so I'm nervous about that too. If I didn't feel as good as I feel right now I would be panicking. But I'm also told "we don't look at those" so I'm eagerly awaiting my end of year PET/CT scan (Oncologist promised me one for my birthday). As I scour the web for info on these tumor markers, I find they are notoriously erratic, sometimes showing hugely high levels due to the medication, sometimes due to something not related to cancer, sometimes as high as 5000 in some people only to drop over a month or two. Great.
CEA marker range is 2.5-5.0 and CA 27-29 marker should be under 38. They are both crawling up slowly...which means... NOTHING! NOTHING! Sigh again.


Cancercation

Hanging on and enjoying the ride, weeeeeeeeee!!!!!
Meantime, I'm on a vacation of sorts. No pills except the estrogen blocker which goes down without any side effects (aside from hot flashes which are very bearable when the weather cools off). Without the poison I almost feel like a normal person. I still go into a lab and take weekly blood-lettings. But it does feel like some sort of a vacation to let my body recover for a bit.
I feel it, the poison, not so much when it is there but definitely when I'm off it. I feel refreshed, energetic, like walking and riding and hiking and doing house projects. I feel like the old me, almost.

Coming up to my cancer-versary in another month! Still alive and feeling much much better than I felt last year about this time. A thousand times better. I'm having a party on my cancer-versary for sure. Every year from now on.

Sunday, September 23, 2018

A new gig and learning how to listen to people stories

New Gig

During my travels across the wonderful sights and sounds of every gosh-darned diagnostic and/or cancer center in the city I confess to eavesdropping on waiting room conversations. What can I say, people talk loudly and sometimes even I, the master of self entertainment, get bored. So while I work out my Sudoku and read the latest zen wisdom on my phone Kindle, I can't help but hear words from the vast variety of fellow cancer survivors.
Salient among such conversations was the difficulty that traveling to cancer appointments pose for some. Being completely functional and able bodied, I neglected to think about such things about my companions in this journey.
Some don't have family or friends to take them, many appointments require a driver due to immediate side effects, some patients no longer drive or never did, some have lost their ability to drive, no car, no eyesight, not good enough health, no gas money, no Uber money, not able to get on public transport, no English, no way to get around, no way to get to treatment, think how awful that would be.
Out here in the West, a horse has always been and still is indispensable. Big cities, especially in the Eastern US, have endless forms of transport. Not out'ere! Vast distances to cover, even in a modern Western city. Our much improved bus system still requires plenty of walking to bus stops and we have one (1) public bus system. Many appointments are recurring, some daily, most at least weekly.

So I thought I would help and starting about four weeks ago, I got a new gig driving cancer patients to their appointments. Turns out the American Cancer Society has a volunteer program called Road To Recovery that accepts (eagerly!) volunteer drivers and matches them with the urgent need of patients to make sure people with cancer can at least get to their treatments. ACS also partners with Lyft but most of the people I drive say their Lyft benefits dry up on the first week of treatment.
No no no, not like this...

People Stories

Like THIS! My faithful steed, now official
ACS Road to Recovery
transport for those who can't 
So after a grueling background check and many applications to get more applications, a bit of self-learning online, I am now officially an ACS volunteer driver. I drive once or twice per week and always in wonder about how many more rides are there to give than volunteers to give them.
Another learning experience for me since I usually keep to myself and wondered how I would handle listening to people talk about their experience with cancer. I've never been one to enrich dry facts with people stories and most of the time I just want a good dose of succinct reality, dry and cold. A hard life will do that to you.
Turns out, I'm a pretty good listener! And also surprising, I really enjoy hearing the amazing stories of my patient's experiences.

Near everyone I meet has a different cancer story, near everyone is at least a little freaked out. Many are simply unable to drive, arthritic, poor eyesight, no car, retired, no family, no money. I knocked on a door once to find a boarded up apartment and my patient having been kicked out the previous day...no address to be picked up from!
Most are truly needy, much more so than I thought they would be. Many have daily appointments across town. Some are in the diagnostic stage, some have quit their jobs to get better and have no income now or in the near future. Some don't understand this thing that is happening to them, some in denial, most vow to fight, some vow to challenge their doctors, near all question the justice of this blow they've been given.

I'm very happy I get to help. My own battle is completely in auto-pilot, pills daily, blood weekly, tumor markers steady, next PET scan not for two months on my one year anniversary...and all that is a very good thing.


Monday, August 20, 2018

Thoughts and art on the journey, homage to the people

Not too far to walk

Here is a glimpse of my next wood engraving, work in progress. With the main lines and elements laid out, now I get to bring forth the light and character of the piece. Keep working.
One of my reference photos
somewhere in the desert...

Drawing on the block with my
engraving arsenal on the right

I was going to call this piece "promised land" but being a realist I understand there is no such thing in life. All we have is our respective journeys and our feet. Once the walk begins, there is no place that is too far to walk if we just have the stubborn inclination to keep walking. The light guides us, surrounded aloft and afoot by prickly, sharp, hard and biting things, we bear all, we move onward to the destination, distant yet attainable and somehow irrelevant. Walking the journey is life, one step at a time.
How is this related to my cancer journey? In every way...in every way...keep working.

BTW "Not too far to walk" is a a song by John Huling, largely unknown master flutist who publishes most inspiring native nature revering Southwest music.

Meanwhile back at the Cancer Center...

After a milestone week in which I swam my first full mile since the snake bit me, I am feeling as good as can be. Grateful, always grateful that I am able to live a new-normal life so fully.
My trusty Garmin stats
first full mile!

Another thing to be thankful for,
someone built this old pool exactly to
100th of a mile!
100 laps = 1 mile

So today I got to visit my friends at the blood-letting lab and the oncology office. I get a visit with the lab techs, always hard working and professional. I get to visit with a budding medical student on a residency rather than with my oncologist, he is also very cheery, nice and professional and I like that he does his homework on my case before uttering some words related to my steady state. He will make a fine doctor.
And I am in a steady state, cancer tumor markers are steady and perhaps a bit down from last month, blood work shows better recovery from the poison pill during recovery week. No more pain, no more rashes, no more digestive troubles (as long as I eat berries), no fatigue other than perhaps a tinsy bit tired at the end of the chemo cycle. All is well.
Then I see my scheduler, who mentioned the shock at seeing people "disappear" after a few visits. She can't get used to that and I am reminded that these folks behind the phones and the reception counters and the needles, behind the scales and blood pressure cuffs and stethoscopes...these people are very much human. Perhaps they don't have the deadly disease but they feel it, just as much as everyone else.

My hat off to them today, thank you for all you do.

Friday, August 10, 2018

Wait, WHAT?!

Insurance notes

And oh let me just start by saying that I LOVE my insurance and all that it pays for and how quick and wonderful they are and am totally amazed that I am still under their tender loving care. Having said that, July will be heretofore known as SHOCK MONTH!!!

So if you know how insurance works, and I barely do, there is a mysterious and rather humongous "deductible" that I never really worried about prior to my rattlesnake bite (cancer, please see first post and name of blog and...where was I?...) Ooooh yeah, insurance reset month, aka SHOCK MONTH is upon us, that month when the deductible, the family deductible, and the out of pocket expenses amounts all reset to zero and you have to start spending in order to save later. Never in my life did I think I would get near those huge deductibles and out of pocket expenses. Well...butter me up and call me a biscuit! Here we are...
One of my favorite artists, Edvard Munch "The Scream"

If you recall, I got a PET scan last month, that puppy's so-called "co-pay" was $950... co-pay...wonder what the test actually costs. But never mind that! That was actually easy and painless.

Fast forward to August, month after SHOCK MONTH, heretofore known as WAIT, WHAT??-MONTH. Yeah, my very first month of palbociclib, the horrible/wonderful drug that is slowly but surely strangling the deadly rattlesnake, without the deductible. I think I mentioned before that this marvel substance costs $11,585 per month or roughly $566.61 per pill. YOOOAUOUCH!

So now it is WAIT-WHAT?? MONTH and I just ordered my next dosage at the tune of $2385 co-pay. CO-FRIGGIN'-PAY!!! Wait, what? There goes that vacation in the Florida Keys...sigh. I went to the drug-ordering website and sat helplessly staring at my "shopping cart," then I went away, then I came back, then I cried a little, then the shopping cart crashed. I ended up talking to a very nice lady who kindly completed my order. Even she cried a little.

I think I'll sell that stupid cat that ate one of my pills last week, she won't get a job. Too bad, she could probably keep an entire household free of crickets, roaches and scorpions. Anyone? ANYONE???
Another favorite, Vincent VanGogh and everything he does

Sigh...
Well, good news is my deductible is met in one "convenient" payment of $2385 plus the $950 for last month's PET.

All in jest, really, very grateful for health insurance. Just thought I would point out some of the unexpected expenses of owning and operating a live rattlesnake inside your bones.

Monday, August 6, 2018

Cycle number 7 just another month in paradise and a cat story

"Normal" again

A bit scary to slip back into my new routine, no PET scans planned, no major events, no expectations...I'm beginning to understand now. These modern days, cancer is being managed as if it were not the deadliest scariest disease that has stricken humankind. "Managed" as if it were diabetes, I am told. "Managed" as if it were high cholesterol, hypertension or any of the other "manageable" lifestyle diseases.
Except of course it isn't a lifestyle disease, oh how I wish it were. How many times I have wished that I brought this upon myself and a strict regimen of diet, exercise and a harmless medication would be enough to "manage" and perhaps eradicate the disease. Nope, it is still cancer, it is still inside my body, a little over here, a little over there...invisible still, unpredictable still. Manageable, they tell me, a whole different kind of scary.
I started a new engraving, called The Promised Land, shows a few bumps on the road to the light, here is the block with my drawing and my arsenal of engraving tools.
The promised land, an engraving in the works
might as well make art while the energy level is low

Cycle 7

So I'm managing my seventh cycle of palbociclib, the deadly poison that is killing the deadly disease. Aahhh, that's too depressing, let me try again: So I'm managing my seventh cycle of Don Quijote pills like the champ I am!
I know what to expect now. Nothing the first week. Curiously my blood values were just about normal before I started since I took that long (long!) two-week break from medication. I was proud of myself for rallying up my white blood cells to resemble any other 58 year old healthy woman out there. Second week brings a bit of fatigue and low blood counts, third week I'm just counting the days until the last pill so I can recover. I get the sniffles, sometimes a bit of a temperature, I sleep a lot! I still haven't had to shave my legs, a blessing, really, but my head hair seems to be healthy as ever.

Also curiously, the first bloodletting showed a bit less lowering of the values than previously. Oh there is hope. And eagerly awaiting my second bloodletting values, which will be posted on my account tomorrow sometime. I write them on my calendar now so I can see at a glance how my blood reacts to the poison. And of course, I wish upon the cancer cells the same fate as my Neutrophils, which are most horribly affected by the mysterious substance.

Damn cat...

Hazelnut, the cat in question, looking very guilty
Speaking of mysterious substances, funny story...
I gather my pill from the organizer box that I swore I would never use in my lifetime. This particular organizer box has 21 days in one color and 7 days in another color so I always know which day of the cycle I'm on. Also no fear of taking more than 21 pills and not "resting" the other 7 days.
Anyhow, I usually prepare dinner, go get my pills and set them on the table on my napkin. I forgot a fork so I went back to get one and when I got back to the table....AAAAAAGH!!! horror of horrors one of my cats had cracked the capsule open and yellow powder was spilled everywhere, including on her mouth fur.
The palbociclib pill says not to get it on your skin! skin! the damn cat ate half the capsule!!! Of course we rush her to the vet in a panic and put her through some horrific detox cycle which includes vomiting and charcoal and bloodletting and a night of observation.
Of course the stupid cat is okay but our wallets get hit with not only the $566 pill wasted but another $501 of vet bill. Bring her back in seven days for another blood count, yeah, that's going to happen...
Sheesh, will the fun never stop?!

Monday, July 23, 2018

I heard two "R" words from my Oncologist today...

PET/CT results

So yeah, last you heard, I was prepped for 50 minutes with an injection of radioactive mCi F-18 something or the other, gobbled some cappuccino flavored Barium, and then crawled into a humming tube with my eyes closed for 18 minutes while the tube took 3-D radioactive pictures of my body. Lots of pictures, it turns out. With the magic of modern medicine and availability of results I learned that each of the PET/CT combined pictures are really a composite of 150 +- individual images, or slices of my body. How cool is that?!
Here are two of my favs, not shining so bright these days and that's a good thing. By the way, I do have arms, they just don't appear in the pictures.



Even cooler than that, ALL my organs are clear ("unremarkable" in doc-talk) and everywhere else the beast is either slightly receding or stable, even after reduced dosage of poison and three weeks completely off the palbociclib, my Don Quijote, the big badass cancer-cell poison.

Even my Oncologist was optimistic

And, boy, he's a tough one to please! But he actually said two "R" words to me today. First he started talking about "partial Remission" although I'm not there yet, which is defined on WebMD:  Partial remission means the cancer is still there, but the tumor has gotten smaller. 
Wait wait, don't start dancing, I'm NOT THERE yet!
But he talked  a bit about my cancer "score" which takes into account number of cancer nodes and their size as measured by a mysterious PET-scan-scoring computer no doubt. When the score hits half the beginning score, they start talking about partial remission and possible discontinuation of medication. Making steady progress toward that goal!

Good news is my score is down from the beginning and this last PET shows everything stable, and THAT means we can discard the P-word, or progression phase. Whew! Yay! And the other "R" word he mentioned was Remarkable! He said my stable state was remarkable! Well, heck, I think so too then!

Back on the poison now

I can't hardly believe I'm saying this but I'm happy to be back on the palbociclib starting with tonight's dinner. Yummy. We talked a bit about my very tolerable side effects and long-term quality of life, which in my case are respectively, minimal and new-awesome. I liked it that he used "long-term" quality of life, as opposed to (for example) "have you filed a will yet?" Just a little cancer humor for ya.
So we proceed as before and looking forward to "stable," a very remarkable-stable BTW, and perhaps more "R" words down the line. Meanwhile, I'm going hiking...remarkably hiking...

Friday, July 13, 2018

I'm getting another PET!

Oh how I love pets...

 

 

Wait, no, not those pets, this PET!



I am scheduled for a follow up PET/CT scan on Monday, yeah, that was quick! Let me back up to events preceding. Went to see my Oncologist this week and we had a nice chat about my tumor bio-markers being a bit wacky, in his words "schizophrenic." Turns out one of them (CEA) is now "normal" and by that I mean normal for a normal person not for a cancer person and that is fantastic news. But another one (CA 27-29) is slowly rising again after being down and has really always been elevated. I dunno, I'm thinking manic-depressive more than schizophrenic, but he's the doc. 
Here is a pic (hint: green=good, red=not so):
Normal!

Not normal...
Soooo...yeah, no, Oncologist is not worried, not "too" worried, could be several explanations, some cancer patients have levels in the thousands that drop mysteriously after a while, test not considered very reliable as a standalone marker, bio-markers lag behind actual cancer presence or absence...BUT JUST TO BE SURE let's do another scan.
Okay, I'm game for PET/CT scans, they tell the truth. Good or bad, the truth is the best thing.

Nervous? me? naaaah (she says while she nods head up and down). There's no hiding from the PET/CT scan, no amount of oatmeal and green smoothies between now and Monday will make that pesky monster not show up. If it has receded more since last scan, then we're in good shape to ignore the bio-marker for a while. If "it" has grown or spread...well, I'm not thinking along those lines but, you know, could happen, the bastard is sneaky that way. So yeah, I'm nervous.

Meantime, I'm off the poison chemo-pill for another week until we see what's up. I predicted that since my WBC count is still down and I had a tiny fever twice last month. Hopefully my superhuman blood-making stuffs kick into high gear and get me back up to where I can restart the regimen (Ibrance/Letrozole, or in my case Don Quijote/Sancho Panza). 

My Zen books tell me if I'm going to make up stories about the future, make up nice ones. So that's what I'm doing and looking forward to those images with my live-in "beast" looking a bit smaller and a bit more beatable on this coming scan. Hey, stay tuned, images coming next week!

Sunday, July 8, 2018

One of my docs doesn't want to see me anymore...

...and that's good news!

I had a follow up appointment with "my" breast surgeon who is very knowledgeable and pleasant. She quotes results from recent research to help me arrive at some decisions, which really help. Of course I go home and Google all of it later, but it is refreshing to have such a communicative doctor who includes her patients in the decision making process to such an extent.
Anyhow, I like research studies and enjoy the austere language in which they approach such dreadful subjects as "should we remove your breast now or not?"
In short, we are not yet considering surgery, mainly because there is a diffuse mass disappearing in my breast and the chemo-hormone-therapy is working slowly but surely.
Besides the life-long consequences of taking out the main lymph nodes are not exactly bright and sunshiny, in fact most women don't miss the breast much but the removal of lymph nodes seem to cause all kinds of problems later in life.
I'm keeping all my body parts for now and she deferred decision of surgery to my oncologist or for at least a year. A year. So many of my fellow survivors don't have a year. I may have many, how lucky am I?

Learning many new things

I also learned that some studies are showing that if we take out the origin site of the cancer, my immune system (what's left of it, more of that in a sec) won't "learn" how to combat possible occurrences of the cancer. Yeah, I'm looking forward perhaps too far to remission and recurrence, but I was born an optimist. Not there yet, I know, I was raised a realist.

And the therapy is working, I learned that slow growing cancers such as mine also recede slowly. My own must have started about one to two years back, unbelievably enough, spreading through my bones while I wasn't looking.

Trouble in WBC world

So yeah, meanwhile back in the world of immunity, my white blood cells seem to be stuck in low-key mode and aren't even responding to my week of rest. I mean really? 
I can add another "condition" to my collection: agranulocytosis secondary to cancer chemotherapy (say that 3 times fast)

I  feel fine, I did run a tiny fever this month because of an increase in the dosage of Ibrance (palbociclib) but I felt "normal", new normal, but normal. Exercised almost every day, got a new Garmin Vivofit 3 to help me stay true. Sleeping fine, eating great especially since my hubby started to lower his blood sugar, we're both human bovines right now eating carrots and greens and other marvelous things.

But back to the White blood cell puzzle, I searched and searched and couldn't find anything else I can do to bump them up aside from getting proper rest, avoiding stress, light exercise, great nutrition. So this Wednesday I defer back to my oncologist for help on that. According to the web there is little to be done except maybe discontinue the cancer meds to let my blood recover, a prospect that terrifies me. Allow the beast to grow again unfettered? Agh, hopefully it won't come to that. We got my hemoglobin up with Procrit and lots of steaks, maybe there's some magic WBC potion? I'm a bit tired of green smoothies, I confess.

Nothing to do but wait. And now you're all caught up!

Thursday, June 14, 2018

So, how are you...REALLY?!

Support is so awesome

I have mentioned that I receive emails, texts, phone calls and cute little gifts from the world over and everyone makes me smile and connects me to my friends all over the world. It's really awesome to be thought of, more so to be wished well and prayed for. I can't thank everyone enough, you know who you are!
Here are some of the latest batch, a "chicken soup" get well card, a good luck horseshoe card, a "fearless" Buddha statue to inspire fearlessness in me, a happy dancing nun, some origami birds...
Fearless


So how are you really?

I laugh every time someone asks me that, usually direct message after I post one of my happy posts on Facebook (Maria's page). How am I really? I am REALLY fine, just like I say I am. I am not hiding a deep dark depression and I am not hiding a horrible prognosis from the docs. Really not, I really am just like "I sound."

"MY" Datura garden at the park

Take today for example, I started my day early and took a walk in the park with the pibble Alegria, checked on "my" Datura garden in the wash, growing like crazy! Then I got back, cooled off, shipped some Peace Puzzle books to a friend who is exhibiting the Peace Puzzle project, shipped two prints to collectors, prepped the studio for printing on Sunday, drew a Datura flower on a tiny engraving block. After lunch (no nausea here so I eat heartily and healthily!) I rested, went for a swim, roughly 35 minutes and 1/2 mile, showered, caught up my art database and here I am! Fine as wine and aging even better. Really.

Last onco visit was good, one of my tumor markers are still up but my health is improving, red blood cells are in the superwoman range and white blood cells coming along, putt putt putt slowly but surely. We increased the dose of poison again so I can continue to kill cancer cells; the tradeoff is that I still have to blood-let every week but I'm used to that by now. Let's publish another gruesome medieval blood-letting illustration, shall we? heh heh yep, just like that!


Luckiest woman in the world

Does that sound like your typical cancer patient? I don't know, I don't know how to be a typical cancer patient or if there is such a thing. I don't think of myself as a cancer patient, I think of myself as the luckiest woman in the world: Maria with a tiny bit of cancer rummaging through my body. Yeah, it's more than a tiny bit but it is receding slowly. And yeah, it may kill me any year but not today, not this week, not this month...not today, I have today. I say that every single morning.

But why lucky? My friend Suzanne just got diagnosed, she already has MS and now has to go through chemo, probably radiation and maybe surgery. Another case I'm following, a lady online, her hormone therapy stopped working and she is too weak to go through chemo, her cancer is growing slowly and there is nothing anyone can do; she thinks of life week by week, soon day by day. A relative passed recently after being diagnosed with pancreatic cancer, spread to the lungs, five weeks to live, they said. How horrible, how sad this disease that mercilessly attacks the weak, takes good people suddenly, spreads silently. Direct your prayers and good wishes to them.

I am the luckiest, I am the luckiest. I walk and swim and am able to enjoy life. I hike to 8000 feet in a meadow I marked with my GPS and named "Fuzzy Meadow" because the grass is 3 feet tall and fuzzily bends with the wind, long strands like mountain spirit's hair flowing and cooling off the ground. This very forest burned in 2005 and it is now greening every spring with grasses and new tiny pines, fir, gamble oak and a myriad of tiny flowers.
I breathe this air after climbing 2 miles, I am tired but I fill my lungs with this air, something I was unable to do all year. I am tired but it's a good tired, a "I've been working on getting better type of tired." That's how I am, I am well, I am hiking, I am enjoying every tiny flower, every piney breeze, every broken ray of sunshine and blade of fuzzy grass.
Fuzzy Meadow, at Mt Charleston Nevada

Monday, June 4, 2018

Going for the long haul

They tell me it's a long race

So yeah, I've never been a sprinter anyway, ridiculous when the warm-up is longer than the race...just kidding just kidding...
My last hike, if you look real close
you can see a deer's butt (how poetic, huh?)
But seriously, good news to report as my hemoglobin is roaring into the "normal" range even for non-cancer people so that's one checked off and I don't have to inject myself with poison number 3.
Poison number 1 (the chemo nucleus killing stuff) proved to be a bit challenging for my white blood cell count so the dose is now lowered. Result is more energy even for me! Hopefully my sneaky cancer cells don't feel as good as I do.
Poison number 2 is a life-long commitment and I hardly have hot flashes anymore (that's the estrogen blocking thing), although with the temp outside starting to reach into the 105 F, it's going to be a long hot summer.
Oncologist visit this Friday, let's see what my annoying tumor markers have to report. As you can see, spirits are good...so there!


Nature and Art

I was meditating upon the nothingness of empty space, okay maybe I was just vegging on the sofa for a bit, when the thought occurred to me that those are the two things I really enjoy and could do for the rest of my life regardless of how long that may be. Nature and art. I'm enjoying everything about life much more now, funny that...
Bee good, bee busy, bee happy!

Flowery meadow behind the cabin
you know what they say:
"the grass is always greener
over the septic tank" :-)

Saturday, May 12, 2018

Solving the puzzle

Sudoku

On some of those "fatigue" days when no energy is to be found, even for a fighter like me, I let the body rest and try to keep the mind from falling apart.
Enter: Sudoku!
Sudoku puzzles are very engaging, easy to learn and have escalating levels of difficulty. There is a unique solution to each puzzle and all the pieces (numbers) fit together in just ONE way and are all interdependent on three dimensions: rows, columns and boxes. I'll get back to them in a sec.
Note I'm up to the Super Grand Master section!


Oncology visit

So my oncologist was cautious to say anything extremely positive about both the results of my PET/CT scan and the latest blood work. Here I've been trying like the devil to raise my hemoglobin and he points out my white blood cell (WBC) count is too low. Well, heck, man! shouldda said something earlier...
Also apparently he didn't experience the thrill that I experienced upon looking at my improved PET scan. Well humph...I liked it...
Seriously, apparently I'm progressing "in the right direction" (how bland is that for enthusiasm) but  I'm in grave danger of catching some bug that will put me in the hospital, as I am currently unable to fight infection with much might. Sigh, double sigh.

The trick is to get the right amount of cancer fighting poison in the body without killing the patient, let's not throw the baby out with the bathwater. As I have learned, every patient is different and the balance is very delicate. The end result is that the oncologist lowered my dosage of Don Quijote pills (as in the legend, Sancho Panza is largely harmless and a good companion, so no change there).

I had not experienced harsh side effects from the higher dose and I liked my progress on the scan, but the boss says what the boss says and I'm a good soldier. Apparently WBCs are very important, he's sort of a blood-guy so he knows his stuff.

Back to the Sudoku puzzles, there is really only ONE solution and there's no use going forward once a conflict is found because only the right number in the right place will solve the puzzle. Every number is dependent on every other number.
Back to the blood problem, there is ONE delicate balance that will work in my case and only the right dosage will solve my pesky cancer problem.

I suppose with the lower dose I'm looking forward to my rash going away!? Still blood letting weekly, sigh...


Monday, May 7, 2018

I'm really new at this cancer thing

PET/CT Results show...

Progress! I had to read the report two or three times. The first time seemed gloomy, second time I saw the progress, third time I was pleased. I still don't know how fast I'm supposed to be shrinking my tumors and metastases or how fast I'm supposed to be rebuilding my eroded bones.
January 2 2018

May 3 2018
I like to say to nurses and doctors when they ask me questions, "I'm really new at this cancer thing." I guess I'm a bit less "lit up" which is the whole point. The brightness corresponds to metabolic activity, which corresponds to cancer cells "getting busy" and reproducing. I will see the Oncologist in two days and ask if the progress is appropriate.

So the spread has diminished, the activity is a bit less, especially around lymph nodes and the original "mass." Hallelujah! Also the report says nearly all the metabolic activity has been cut in half. Or in doc lingo:
"There continues to be axial and appendicular osseous metastatic disease less intensely hypermetabolic overall when compared to the prior evaluation consistent with positive response to therapy."

I'm focusing on the "positive response to therapy" part!

Strong

This morning I had an insight that I am getting stronger. Few times these past days I had gotten discouraged off and on, and I just have to keep thinking about that word and what it means: "strong." Strength of body is important to me and I am regaining quite a bit of physical might.
But the main thing is to be mentally and emotionally strong. I refuse to be a burden to anyone, mostly, even to myself.
Strong, stay strong...strong.

Tuesday, May 1, 2018

You just have to laugh...

Chemo brain and a rash?

I have learned a ton about cancer and why I probably shouldn't have it, but that's just my opinion. The reality is that the beast is lurking still, probably, I don't know really. But Thursday is PET/CT Scan day! So I'm jazzed about that in a terrified sort of way. What if the cancer isn't going away?
What if the chemo-brain I have at the end of each chemo-pill cycle is just killing my brain and not the beast? Ah, inquiring chemo-minds want to know...

Chemo-brain is just another name for fuzzy-stupid-brain, kind of like a hangover with fuzzy vision and teary-eyes as if I had horrendous allergies. Did I mention lots of snot? Hey I'm feeling a bit "realistic" so I'm taking you with me down this road of humorous side-effects. I have praised all the gods daily for NOT giving me horrendous side-effects, aside from a bit of nausea and THIS RASH!!!
Was that really necessary?
...as a side-effect, I mean
Yeah, like I really needed a rash. Fortunately just on my arms, a bit on my face, some on my shoulders, leg...but just the left leg, oh and chest. Attractive, I must say and it doesn't even itch, except all the time. I'm thinking of coloring each dot a different color with permanent marker. Or maybe drawing a maze between the red blotches, I don't know, chemo-brain makes me feel artistic.

Sigh, well, the chemo-brain made me write all that. Tomorrow I take the last chemo-pill of this 21 days and then I get a week to recover that other Maria. And I get to go blood-letting...

Seriously

Blood-letting is going well and I haven't had anemia for about 3 weeks now. I feel stronger and more energetic. I have hiked the pines, I have walked the park, I am enjoying the bit of rain today, refreshing and renewing. I am using my fuzzy brain as an excuse to just sit outside and enjoy the cool weather and rain-music on the driveway. Desert plants love the spring rain more than any other plant, and will later reward me with countless blooms.
Turkish glory-of-the-snow

Gamble oak

Papi's cactus

mountain mahogany
Thursday the PET/CT follow up...did I mention I'm terrified in a very good way? Stay tuned and wish me luck.

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...