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)

So what's up with the rattlesnake?

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