Thursday, May 2, 2019

Well it's confirmed, the snake retreats!

Yay!

A butterfly, why not? I'm in a nature mood
My onco confirmed my PET's results! I even got a high five...low five, really but that's awesome in the big scheme of things. Seems the meds are working and the snake is finally finally finally retreating at a visible pace.
As you recall I posted my PET results last blog post and only awaited the doc's visit to be happier than happy. Well, I'm happy!!!
My next bloodletting and visit in two months, seems like a vacation.

Reminiscing

In the very beginning I saw docs and techs at a frenzied pace (see this blog post: http://www.jumpovertherattlesnake.com/2018/01/major-developments-frenetic-days.html.

The first three months of this surreal adventure were a sequence of visits to places I never thought I would see in my life, like the inside of an MRI. Here is an excerpt from my 2017/2018 calendar in reverse order... "those days:"

Jan 25 Lab blood test
Jan 22 Medication approved
 by insurance co
Jan 18 Lab blood test
Jan 16 Liver biopsy
Jan 12 Blood test
Jan 11 Oncologist
 Start therapy
 CYCLE 1:
 Ibrance 125/Letrozole
 Lab blood test
Jan 9 Breast surgeon
Jan 5 Bone dexa scan
 Brain CT scan
Jan 2 PET/CT whole body
2018
Dec 22 Oncologist
 Diagnosed
Dec 20 Breast/lymph node
 biopsy
Dec 19 Oncologist
Dec 13 CT scan
 abdomen/pelvis
Dec 11 Breast ultrasound
Dec 6 OBGYN pap
Dec 5 MRI lumbar spine
Dec 2 MRI thoraxic spine
 MRI chest

Nov 30 Mammogram
Nov 29 My birthday
Nov 28 Lab blood work
Nov 27 First doc appt
 chest X-ray
 chest CT
2017

Wow, I can't even remember what that felt like, day after day, all bad news making the surreal totally real and absolutely terrifying. After those 3 months, weekly visits to the lab for blood work and monthly visits, sometimes twice a month with the doc.

And now...

Two months! Every two months I get blood work and visit with doc. Wow, wow, I feel free again. Oh yeah, high cholesterol still, who cares. Still on the ketogenic diet, down to 136 lbs, next month I find out if the cholesterol thing gets "fixed" with this diet or if I have to go on statins (as insisted twice now by my worried onco).

I am a bit at a loss on what to do next. I was explaining to my hubby how the mind goes from resigned and calm acceptance "I am going to die but it's okay because I have had a great life" to a battle cry "this thing won't take me! I refuse destiny!" to a more realistic "maybe I will be one of the lucky ones..."
Roller coaster for 16 months, just like that, every day, up and down. And NOW I finally come closer to understanding the "battle." It's an inside thing, a mind thing, a fear thing, a very emotional and very real battle. During the first year, I just kept my head down and obediently went to my weekly blood-letting, to the docs, to the imaging labs as if in a tunnel with a tiny light at the end. Now the tunnel opens up and my world is vast again, limitless again.
My latest hike, spring in the desert!


Right now I am a bit lost, the battle is still ongoing but in the background, way back there. The future looks bright. Nothing is over, yet my body is hiking again, climbing higher mountains a bit more fearlessly than before. Plans for working on the cabin matter again, the forest welcomes me again, everything is as it was "before." Almost, almost. I need time to transition to life again with the fear subsiding.
A quiet place to enjoy, my front porch

Monday, April 1, 2019

I knew I loved PETs for a reason! The "tube" speaks...

  Battle is now 16 months old 


Me (left) and my oncologist (right) battling the snake
Yeah, bet you didn't know the snake had nine heads! Me either. But the latest PET has spoken and, what the heck, I'll just post it right here, check it out and dance with me! I will highlight the danceable parts and annotate in parenthesis:

POSITRON EMISSION TOMOGRAPHY WITH NONDIAGNOSTIC CT
CLINICAL HISTORY:
Metastatic breast cancer. 
FINDINGS:
On today's PET scan do not see any convincing metabolic tumor above or below the diaphragm.
No metabolic tumor seen in either breast or axilla. (the original nest of the rattlesnake)
Mediastinal small adenopathy (lymph nodes in my mid-section) stable CT appearance, in the transverse axis nothing measures more than 6 or 7 mm. No associated significant FDG uptake, maximum SUV values 2.5 or less. May be sterile (kaput, no mas, writhing in its last throes...) but would advise continued imaging surveillance.
On localizing CT do not see any suspicious lung nodules.
Below the diaphragm do not see any metabolic hepatic or adrenal metastasis.
The previously described metabolic bone metastasis in L4 and T8 are much less obvious, FDG uptake similar to other bones. On CT perhaps slightly more sclerotic.
Pelvic metastasis less obvious, no significant FDG uptake. On CT there are some small lucencies (that sounds pretty, doesn't it? Sounds like the name for a chihuahua, "lucencies" are lighter areas in the bone, probably where the snake chewed my bones away).
Proximal femur metastasis also much improved, maximum SUV value 3.3 (down from 10).
Do not see any definite new disease. (translation: the snake is sleeping, shhhhhh...)

IMPRESSION:
Continued interval improvement, mediastinal disease/adenopathy barely perceptible, may be sterile.
Bone metastasis significantly improved, most show FDG uptake similar to adjacent normal bone.

Would however advise continued imaging surveillance.
Here are some comparison images from December 3 2018  to March 27 2019, remember "shiny yellow spots" are a sign of the cancer munching on the glucose they just injected me with = BAD (except for the brain and bladder, always working).

December 3 2018

March 27 2019

Celebrate? 

Cautiously, eagerly awaiting interpretation from my oncologist two loooooooooooooooong weeks from now, I say: yaaaaaaaaaaahooooooooo!!!!

Here is another great book I just read:


Tuesday, March 19, 2019

To the tube!!! Maria paranoia, I'm working on it

A list of concerns

So this time I brought a list with me because invariably I leave the Onco's office, slap my head when I remember something that I wanted to ask. Really it is always a good thing to write down concerns and present them one by one in the scant time that these awesome professionals have with each patient.
Weight - I wanted to mention my weight loss was intentional because nothing freaks out an Oncologist more than a sudden drop in weight. Usually means the snake-beast is munching away at something important. As you recall, my primary MD put me on the ketogenic diet which has that wonderful side effect, 11 lbs. so far.
Fasting glucose - Since there was no need to and nobody asked me to, I had not been fasting for my monthly blood-letting so my glucose "appeared" to have dropped a whopping 20 points. I never really had a problem with blood sugar and it is now below the threshold for some deceased people...well, recently deceased.
Lipid profile - Since one of my superhero pills (Afinitor, everolimus) seems to be fussing with my lipids, I requested again a lipid profile be included in my blood work.

Okay! check, check and check!

Imaging vs tumor markers

Now for the doc's concerns. Apparently as I delve into the literature regarding blood tumor markers (mine are CA 27-29 and CEA, which both stand for something really medically boring), the experts concur that these are to be taken with a grain of salt as a sole diagnostic tool. Incidentally since KETO releases a lot of sodium I am happy to take in an extra grain of salt.
Aaaahhh, there you are...

But anyway, imaging shows where the truth (and the snake) lies so, as I predicted I am scheduling a PET/CT scan. My first one was the most fun, now they are just boring although I like that I get to watch "Too Cute!" on the Animal Planet channel...for an hour...after drinking a goopy thing and being injected with secret radioactive stuff (FDH or fluorodeoxyglucose). The glucose is rapidly absorbed by the tumor sites or nodes and shows up because of the "fluoro" which makes those bright images. The brighter the image, the higher the uptake of glucose by the cancer which means bad news.
By the way the CT stands for computerized tomography and it is done simultaneously because it shows the body "geography" and helps localize the bright spots. Otherwise a PET (positron emission tomography) would show some fuzzy bright spots only, so they superimpose them.
PET/CT image from May 2018

Looking forward to not shining so bright this time.
Here is a link to my first PET/CT if you want to know how the procedure goes as viewed by a first timer: http://www.jumpovertherattlesnake.com/2018/01/pets-and-cats-and-mrisoh-my.html

Perspectives...

Another one of my concerns was that my blood pressure has been erratic lately and I get paranoid about taxing my poor little heart, and it has been up to 138/85 in some days...and the bright young PA laughs at me! Laughs! First, do you have any idea how hard it is to make Oncologists laugh? Really takes some doing. He tells me to let him know when I get a 180 reading.
So I think I am a bit paranoid but it's a good kind of paranoia, I think. I will work on not being so obsessive (she writes the note on her Qardio blood pressure and weight/body fat app, which feeds to the Apple Healthkit app, which also reads the workouts from the Garmin Connect app, which shares info with the Cronometer app for analysis of dietary intake). Paranoid? Me???
Some info from Cronometer.com on my dietary intake

Thursday, March 14, 2019

ETDS and PPMS

Walks in the park are numbered


On a cool and windy morning Alegria and I took one of our last walks in the park, and, before you think gloomy thoughts, this is simply because of the seasons in Las Vegas. They go something like this:
WINTER - wind - cold - cool - sunny - cold - colder - unseasonably warm - bone chilling wind biting cold - HOT!
SPRING - rainy - windy - cool (today) - HOT - HOT - WTH happened to spring? - HOTTER than hades HOT
SUMMER - forgettaboutit HOT HOTTTTT AAAAAGH I-want-to-move-to-Northern-Colorado-HOThothothothothot - never-ending HOOOOOOOT!!!!!!!!!!
AUTUMN - drop 30 degrees in one day, usually around beginning to mid November, yes I said November, then see WINTER
So yeah, like the picture, only two "real seasons, the rest is a 2-6 day transition between winter and the long hot hot summer. We are now in those WTH happened to spring 2-6 days, it was 38 F this morning when I left for the walk and 45 F when I returned, and by the end of this week we will hit 80 F.
But that's not the bad part, the bad part is our morning "lows" will rise from 50-60 F in the next few weeks to an unbearable 80-90 F beginning sometime in April to May. No more walks in the park. We still have the mountain, of course!

Which brings me to ETDS and PPMS

The aforementioned dog, Alegria, has ETDS while walking in the park. I have now trained her (or has she trained me?) for four years with dog treats in hand. She now walks to my side when we see a person coming, pretty close to that when we see a person with a dog coming, she sits and asks for a treat with the widest smile a dog can muster (pibbles are notorious for their handsome smiles). If we see a bunny she lets me know she has seen it and has not made a move to chase it, then asks for a treat. If we cross a street, she obediently walks close by my side and then asks for a treat.
Later in the walk, she just asks for treats for no reason and I tell her she has ETDS or Excessive Treat Demand Syndrome. She tells me I'm full of BS and I give her a treat, of course.

PPMS is different and not quite so fun. I suffer from PPMS these days, or Pre/Post Measurement Syndrome. It's a cancer thing. My monthly blood draw revealed a slight rise of my tumor markers, namely CA 27-29 and CEA. Both up just a tad, one more than the other. I was nervous when I went for my blood-letting because I'm always nervous. There is no way to fool the test, there is no way to "tell" if the snake is growing or shrinking; the silent enemy doesn't let me know with pain or fever or any little sign if it is back to gnawing at me or disappearing. Seems it's gnawing again.

I'm a little disappointed at my new super-hero pill (Afinitor, everolimus), failing already after only 3 months, and I am predicting that my Onco will order a PET/CT just to check up on the beast: "to the PET TUBE, young lady!". Appointment is next Monday and I will be sure to update on the outcome. Sigh...
Meantime, this little week between the blood-letting and results and the visit with the Onco is the most mentally excruciating and emotionally draining period of my cancer life. What will they say? Stay tuned.

Incidentally, I have yet to see the results of my lipids test but after seeing my tumor markers, I honestly don't care what my cholesterol looks like these days. I continue on the ketogenic diet as ordered by my MD and hopefully, aside from the stupid cancer-snake, all else looks great.

Wednesday, March 6, 2019

Where do I start...oh yeah, breakfast!

Bit (lots and lots) more research

I continue to explore the science behind the Ketogenic Diet or, more accurately, the Ketogenic Lifestyle. I have now gobbled five books, two popular, two academic and one scholarly, in that order, and a few selected peer-reviewed journal articles pertaining to my specific situation. Some contradictions are found in the popular books so for anyone wishing to enter the lifestyle, I highly recommend more academic resources.

I have learned so very much about nutritional ketosis and therapeutic ketosis and how our cells use ketones for fuel and a bunch of chemical reactions that were a bit dusty from my college biology and physiology days. So far no quackery or miracles or lapses in logic but I vow to continue my research, especially focused on ketogenic living as an adjunct therapy for traditional cancer treatment. More to learn for sure.
A delicious KETO salad:
kale, spinach, lettuce, cheese, avocado,
olives, mushrooms, full fat salad dressing

Deep in KETO

In any case, armed with a few apps for my phone and a whole lot of kale, avocados and collard greens (did I mention eggs and bacon?), I'm now deep into the therapeutic ketogenic zone--already! Usually it takes anywhere from four to six weeks of trial and error to get there. Apparently my bod likes this particular mix of nutrients.
Oh yay! I get to eat eggs again! and chorizo...
organic chorizo that is, with spinach

So I thought I would report on the skinny of the diet (pun intended) and various aspects that seem totally fascinating to me.

First and foremost, I am eating almost twice the calories I used to, nearly 1300-1500 per day versus a measly 700-800 per day. This makes sense because fat has twice the calories per unit as carbohydrates (aaaaagh, I said the c-word!!!, for educational purposes only). The good news is...

I have lost 7 pounds and 2% body fat in two weeks and two days and no, you skeptics, not water weight! I have a cool bio-impedance scale that shows fat percentage, lean mass, bone mass and water percent. I put on weight due to the letrozole and fulvestrant therapy (estrogen blockers) and I was desperately trying to hang on to maintaining my weight. No more.
I am hoping that fat loss is also a sign that my cholesterol and triglycerides are getting "fixed" as they were before I started taking that dastardly (but life saving) cancer poison.

My blood glucose and ketones are awesome and steady as if I had been doing this for months. Who knew!? Oh you bet I bought a keto-meter, I told you I'm deep into this stuff.
Daily poking for a little while,
until I know my average numbers
for pre and post meals ow!
This is a link to the testing kit I bought when I started this thing, yes of course I researched the meters!:


Energy and Exercise

I now have more energy than ever, I think, maybe. I don't know, I have always been pretty high energy and I was missing that "high." Well! here I am again. Some days I'm right down silly and euphoric but have been able to channel that into working around the house and making art.

As for exercise, I am back to nearly full tilt, enjoying daily walks, some bike rides and indoor rowing. Aerobic exercise is a cinch, just takes the body a bit longer to warm up to the ketone-for-fuel thing but burning fat for fuel is a good thing. The first 15 minutes or so are tough to get through and then I kick into high gear.
Anaerobic exercise is a tad tougher so far. Since I am likely not totally keto-adapted yet, my muscles are not storing as much glycogen and they tire sooner. In another few months I will report again on that score.

Bloodwork

I "ordered" (politely requested) my Oncologist's office to order a lipid panel to go along with my monthly blood-letting. I go for testing next Monday and will happily report on results. I am looking forward to see if my new lifestyle can fix the cholesterol and triglyceride problem.
Also a bit nervous about telling the Oncology team about going KETO but, after all, my primary MD told me to!

Back to reading. Back to enjoying life, always always, one more day! (I think I'm out of kale, back to the market)

Wednesday, February 27, 2019

Say whaaat? Another strange change in my life

Good news, bad news

Recalling visit to the Oncologist, he worried about my horribly elevated (horribly for me) cholesterol numbers, particularly the LDL number (bad cholesterol), and referred me back to my Primary (heretofore known as PCP for Primary Care Provider) for cholesterol lowering advice or medication.
And side effects...well that was the bad news.
Good news is that my PCP is a "fix it first with diet" guy. Awesome! Incidentally he was more worried about my triglycerides than anything else and proposed my HDL/total ratio as the crucial number to watch. Okay, I'm all for that.

Now the kicker, PCP says that my options are:
1- Low carb diet
2- Medication (statins) with possible liver side effects

Since my liver is essential to processing both the estrogen blocker (Faslodex, fulvestrant) and my no-chemo chemo superhero-pill (Afinitor, everolimus), I picked choice numero uno. Anything but more poisons running around in my poor abused body. But wait...

Eat fat????

PCP promptly pulls out a neato colorful flyer with a new and strange food pyramid and the title Ketogenic Diet. KETO??? fad-diet keto? meeeeee? traditional nutrition and fully schooled Exercise Physiologist me-on-keto????
The wacked out keto pyramid
this is going to take some getting used to

Shock, sheer shock, overwhelming disbelief. First, a MEDICAL DOCTOR who actually prescribes lifestyle modification in lieu of medication. As if that is not shocking enough, take everything I have learned about good nutrition, proper healthy dietary habits and toss it out the window from a skyscraper. Aside: well, not everything, as I read more and more, this thing is actually starting to make some sort of perverted physiological "sense." Ay ay ay. 

Of course immediately I hit the books, journal articles, medical websites, studies, more books, more studies, more web searches...I'm exhausted, my brain hurts and need a PowerBar, but NO!!! too many carbs on PowerBars???
Wow, just wow... my life upside down again, as is my standard nutritional pyramid.
Sigh. Double sigh.

Poor piggies

Well, I abide by the motto "insanity is doing the same thing and expecting different results." I have faithfully watched my nutritional intake all my life off and on, and religiously since my cancer diagnosis. I read all the recommendations for good nutrition and healthy helpful diet modifications to stay healthy and keep up immunity during cancer treatment, particularly during hormone based therapies.
Turns out, in my recent binge research of all this mind boggling information, there is some evidence that low-carb diets particularly coupled with high fat intake (shudder at the thought) have been shown to LOWER cholesterol, blood-pressure and body fat. Heeeeeyyyy!!! there's a side effect I can live with! My estrogen blocker has caused me to struggle to maintain weight and I have lowered my caloric intake to levels that would make a mouse skinny in a struggle to keep my weight down.

I read more and more and find that this thing might, just might! work to lower my cholesterol without any horrible side effects. More importantly, no additional medications will pass through my lips if this works. Seems any short or long term damage evidence from the ketogenic diet is largely just not there. Seems the ketogenic lifestyle works to also have healing effects on metabolic diseases, thyroid problems and a host of other maladies. Also seems there is scant and nascent research that ketosis actually may help with cancer management since cancer cells cannot utilize ketones to grow the way they do carbs.

Lacking a compelling reason "not to" I'm skeptically diving head first into ketosis. And as everything else I do, I'm taking a scientific approach to this new "thing" and already have the apps, the testing kits, the bloodwork and the information I need to really really go ketogenic right.

Well, it is the year of the pig after all...gimme that bacon!!! Stay tuned.
Watch yourself, I'm coming after you!



Tuesday, February 19, 2019

All is well...almost all!

Let's recap, shall we?

Been a while but all is well, which I guess is why I don't post all that often anymore.
Let's see, I left you when I went hiking and took my very first pill of the new superhero Afinitor (everolimus). No horrible side effects other than some recurrent mouth sores and some gory looking rash-like "things" appearing and disappearing mostly on my hands and arms. No pain, no itch, energy up. Tumor markers are okay, one is down quite a bit, the other went up a little but still down from beginning of the year.
Here is my "cancer feat of the month," an indoor 90 minute triathlon of sorts, happy to be exercising almost like I used to:

I am still getting a monthly double shot of estrogen blocking stuff to starve the cancer cells of their favorite food. And speaking of favorite food...
Chorizo omelette, I will be having
none of those for a while

If it's not one thing...

It's another! My cholesterol shot through the roof. What a blow to my healthy lifestyle, really bummed out about this.
My blood work otherwise was awesomely normal, including the pesky white blood cells and neutrophils. Normal! Almost, but wow! it has been over a year that my immunity took the first blow and never recovered.
So when I started taking this new magic pill I read the 4,238 side effects and one of them was high cholesterol and high blood sugar. I watch what I eat like a hawk and keep a daily diary (well, on an iphone app) of everything that crosses my lips into the gullet. I carefully studied cancer-friendly foods and things to avoid. My blood sugar was unchanged and nobody was checking my cholesterol so I didn't worry. Then I got an email from the lab (Quest Diagnostics) that said patients can now self-refer to some tests. On a whim I decided to get poked and extra time early this month and check my cholesterol. Crap, sky high, through the roof, another test where I just want to go back and say: "are you sure this is me?"

Back to my primary

So today I saw my Oncologist and he said he would prefer if I treated it and referred me back to my Primary for cholesterol medication. So this is turning out to be one of those medical appointment weeks, Oncologist today after a lab visit last week, shot in the butt tomorrow and a sneak appointment with my primary on Thursday. Probably will end up on some sort of cholesterol meds...probably with some side effects of its own. I sure hope some of the side effects are weight loss and an increased likelihood of winning the lottery, wouldn't that be nice!

I leave you with another hike in which I encountered a fresh cougar track, yikes!
sunny snow day at the mountain

cut my hike short after spotting these in the fresh snow

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...