Who are the true patriots?

Patriotism in this country used to be linked with sacrifice. During WW2, Americans endured government-regulated rationing, food and product scarcity, water and utility limitations and many many other sacrifices. They turned off their lights after a certain time of evening. They collected metals and other products soldiers needed. All of this was done willingly and without complaint. 

When polio struck, the entire world reeled.  No one knew where it came from and who it would infect. Americans were terrified. When the polio vaccine was created in 1955 and distributed a few years later, we were tearfully relieved and thankful.  We all gratefully accepted the vaccine. Today, polio is all but eliminated from the U.S.

The smallpox outbreak of 1947 in New York City was another medical crisis. It shocked residents, many of whom had been previously vaccinated. (In some, the vaccine didn't work or had expired). Since the vaccine was available and refined, 6 million New Yorkers were vaccinated in less than a week. No weeping, wailing, or gnashing of teeth required. Thanks to the success of vaccination, the last natural outbreak of smallpox in the United States occurred in 1949. In 1980, the World Health Assembly declared smallpox eradicated (eliminated), and no cases of naturally occurring smallpox have happened since.

https://www.cdc.gov/smallpox/index.html

https://www.nytimes.com/2020/12/18/nyregion/nyc-smallpox-vaccine.html

Long ago, Americans knew the importance of supporting one another and sticking together to fight a common foe. 

We live in a very different country today. Many Americans only care about themselves. And they are proud of their self-gratification. They besmirch patriotism by acting in completely unpatriotic ways. They pretend that their refusal to be vaccinated or masked is somehow upholding the “American Way”.  

Sorry, they’re full of merde. It’s doing the opposite. Their behavior is prolonging a worldwide pandemic, stressing hospitals and medical people and adding unnecessary risks to the already immune-deficient.

Plus, they look profoundly stupid. 

Their patriotism is fake, bordering on treason. The true patriotism of long ago has reverted to complete insubordination and selfishness. 

 

The dreaded "news", Part 1

This week I received the news that all cancer patients dread to see:

"Considering the extent of her visceral involvement, I also recommended that she engage palliative care because her status could decline quickly depending if she does not respond to the next line or two or treatment, and because it is helpful to have discussions about goals of care and quality of life when she is in a lucid pain-free state."

The "this might be the beginning of the end" news. Ugh. I'm not surprised. I have metastatic ascites, from breast cancer, which has a prognosis ranging from 0 (nada, zilch, zippo) to 50 months (4 years, 2 months by Gregorian calculations) And that upper range, or surpassing it, is as likely as winning Powerball. Or, seems like it, anyway. My 50 months expires this December. 

I hate to admit it but the first thing I thought about was, “Now that bottle of 360-count Vitamin D (that I take every other day) will be wasted.” Then a massive wave of memories, people, and sights washed over me, making me a blubbering mess.

I'm not afraid of dying. Seems quite peaceful. But I’m going to miss so many things and people and that makes me sad. The blue-blue skies of the Pacific NW (shhh, yes we do have them, many of them). The majestic snowy mountain peaks. The thrill of seeing a wood duck in the wild, its reds, blues, and greens peeking out. Walking, biking, hiking and exploring the nooks and crannies everywhere I go. Hearing honking seals. Playing with a neighborhood doggie. Baking my muffins. Reading Laura Lippmann and others. Eating cheesecake. Sharpening a pencil. Having friends delight me with visits and small gifts. Dancing. My music. “There’s a Place in the World for a Gambler” is a lovely Dan Fogelberg tune, one of my favorites, and I dedicate it to Rick, my husband. 

Rick. 

As Dorothy said to the Scarecrow, “I’m going to miss you most of all.”  

OK, pardon me for a few moments. 

I cherish my friends and family. You all are the best. I wish I could spread my arms long and wide to hold all of you tight. You’re all so talented, bright and funny and I love all of you to pieces.

Good news is that they are coming up with new drugs all the time. Next Tuesday I start a new chemo that was only approved here last month! Of course, it’s IV chemo, I’ll lose my hair, blood counts will bottom out, crushing fatigue will set in. 

I also mourn the loss of my current relative functionality. We’re going to ride bikes later this week and that might be it. 

But, who knows, maybe that “Powerball” has my name on it. I can always hope. 💝

Gratitude party!

 It seems like the earth is spiraling off its axis. I decided this was a good time to thank my lucky stars for all the good things in my life, instead of railing about all the bad.  Railing becomes exhausting. 

1. I am so thankful for my hubby. He takes such good care of me and we're so simpatico in many ways, I feel like we're related.  (other than the married thing). Something-something-once removed or whatever. Actually, we ARE likely remotely related but I haven't figured it all out yet. 

2. My family and relatives are the best. They all live hundreds and thousands of miles away but I always feel them hovering over me. A good, loving hover. 

3. I love our yard bunny who comes and goes and amuses us with his Zen-like stillness and concentration.  What is yard bunny thinking about? Probably something along the lines of "Who is going to try to eat me next?" Well, not us, yard bunny--you're safe here (I think he knows)

4. I'm thankful that I'm not dead. Truly. I'm doing well on my medications and currently my cancer is not progressing. Xeloda has been good to me so far. Brain drain is becoming comfortable. Corroded feet and hands are becoming comfortable. As long as the crap is keeping me alive, I'll take the body and mind blows. Ascites is still my nemesis, but it seems to be subsiding somewhat. 

5. I have the most wonderful friends! They check in with me regularly and help keep me positive and in good humor.  

6. My neighbors are great! Although we don't always see eye-to-eye on everything, they continue to be friendly, kind, and compassionate. Awesome! 

7.  I am thankful for Ruth Bader Ginsberg.  'Nuff said. 

That's it for now. Long posts, especially lists, can quickly lose their luster. 

But I'll add more later. 

So, what are you all grateful for? 😍

"Just dropped in to see what condition my condition was in......"*

How is everyone doing? I wish I could bundle you all up and bring you to a big party at our house. I would love to catch up with everyone and share smooches. Coronavirus-free smooches, natch. (Although I’m a Tecate gal myself 😂. If we must drink Mexican beer….)

OK, enough about you—here’s what’s going on with me. Healthwise, I’m doing pretty well. I had a CT scan earlier this month that showed my condition is basically stable. Yay!! I still have the annoying ascites (Fluid in my abdomen) that I have removed every so often (paracentesis). Sometimes it’s a week, sometimes a month between removals. Lately, it’s been 10 days. They’ve been draining anywhere from 3 liters to 5-1/2 liters. My next appointment for that is Monday. Luckily, they’ve been supplementing me with albumen infusions after each paracentesis. Albumen actually comes from plasma donations, so if any of you are able and so inclined, that’s an example of where your donation goes. Eat a nice juicy ribeye before you donate, so there’s lots of yummy protein in your plasma donation. Just a suggestion. 😉

The biggest plus about my condition is that I’m FINISHED WITH IV CHEMO for the time-being. That is so exciting to me. Nearly 2 years of that brain-and-body-depleting stuff. While I’m glad n all that it kept me alive, I was getting disheartened and even a bit bored with the tick-tock sameness of every day. 

I didn’t even put up a tree this Christmas, too tiring. And I usually love to place all my nutty ornaments. 

If we didn’t have medical appointments, we’d never go anywhere!

No, it’s not that bad. I love that we live within an hour or two of lots of interesting places so we can do quickie day trips to see the ocean, mountains, lakes or endless bland & ugly tree farms. I told you about the tree farms, haven’t I?

While I am no longer doing the IV chemo, I’m still using oral chemo, this time a drug called Xeloda. Sounds like a love interest in Star Trek. “Oh, Xeloda, we must link our inter spacial antennae at once!" I hope it kicks butt. It’s 4 pills twice a day. I’m on the 10th day of my first cycle, 14 days on, 7 off. I feel my lovely brain and energy returning. I might even be able to ride my bike soon…

Which brings me to……

MY BACK IS KILLING ME!!!!!

I had a brief hurty incident earlier this month but recovered quickly from that. But as I breathed a sigh of relief, I felt another sharp snap in my back. (Well, it was actually from something a little more strenuous, uh, washing my face. I can’t even have amazing stories to tell about my injuries. Like, I ran into the street to save a litter of kitties from an oncoming steamroller! Nah, just washing my face, regular soap, regular water).

After a visit and x-rays at Urgent Care, I found I have a compression fracture at L1 and possible mets sprinkled along my spine. This past week I had a bone scan and a MRI. Bone scan confirmed fracture but was unclear about the mets. MRI seemed to be pushing for mets. 😟

Darned MRI. Have you ever had one? It’s the highly-stressful test in the tiny tube that bangs out a series of clangs and bongs and boops that does everything to make you insane. 

BUT…

I have figured out a way to make it tolerable. Set the beeps and boops to music!! 🎶 
Here’s what I came up with:

1st series: Badda bump, bah bah bah bah (Stayin’ Alive)

2nd series: Doodoo doodoo doodoo (Beat It)

3rd series: Bamabamabamabamabama (Helter Skelter)

4th series: Ding da ding da ding da DIIIIIIINNNNG (Funeral for a Friend)

5th series: Ba bom bomp. ba bom bomp. ba bom bomp (I can’t dance)

6th series: darnt darnt darnt darnt bam a lam (Black Betty [Ram Jam])

Now that you’re totally convinced that I went insane anyway, I guess I need a brain MRI. 

Meanwhile, my oncologist is setting me up for a PET scan and an appointment with a neuro-surgeon to get a possible kyphoplasty for my spinal fracture. Look it up, it's an interesting procedure and relatively un-invasive. If it’s mets, I’ll probably have what they call palliative radiation treatment. Which is an oxymoron if I ever heard one.

Wish me the best!!!

Love you all!

* Thanks to Kenny Rogers and First Edition

I had a dream....

I dreamt last night that all my friends and I had colonized the moon. We had created little villages, and built cute little bungalows of pastel colors; soft pink, sky blue, grassy green. Our kids played games outside: basketball, softball, kickball, hopscotch. We all felt such relief at leaving the damaged earth. We gazed up at the earth, like we now gaze at the moon. We watched as it burst into a blazing ball of fire. 

This was not an uncommon sort of dream for me but was a little more specific than usual. My dreams usually involve me floating, flying, or sliding through the air or in the water, but generally do not occur in any identifiable location. Vague waterparks in the sky are the foundation of many of my dreams. They are wonderful.

I feel lucky because I know folks who consistently have awful dreams: they are being chased by someone with a gun or a knife, they're being abandoned in a lonely town, they are falling off cliffs. My dreams are rarely, if ever, like that. And if they are, I'm experiencing it as an adventure. As a cool place to explore. As a mystery to solve.

But, still, the MOON? Where in heaven's name did that come from?

Then I remembered that the last thing I read before I fell asleep was an excerpt of Carl Sagan's A Pale Blue Dot from The Sun magazine. With the NASA photo:  

(Google it and you'll find a better photo, in color even)

Many folks might disagree, but I find this photo to be very comforting. Rather than being the center of the universe, our Earth is but a minuscule dot, barely the size of the period at the end of this sentence. We just aren't that important. Whatever "stuff" we're going through doesn't mean a hill of beans in the grand scheme of the cosmos. 

As many of you know, I'm undergoing treatment for metastatic breast cancer, or MBC. Will my next scan show progression? Will my next treatment cause worse symptoms? How many drugs are still available that can help me? How many years do I have left? When I run out of drugs, how will I die? Who will take care of my husband? All are heady questions and all cause me great anxiety

But for some reason, when I look at this photo, I feel my anxiety melting. It's as if my worries are dissipating in the vastness of the universe.

Still, life seems so complicated these days, the world, our country, our politics are all in shambles. Heck, I get upset when I see an empty parking lot at the local pizza joint, or a car that's broken down on the side of the highway. Human suffering is everywhere. 

But we can do simple things like donating a little to causes we believe in; smiling at a stranger; chatting with a neighbor. 

Little acts of kindness can make us feel bigger than that tiny dot. 

And for fears that devour us, set them free. They are but a tinier dot in that tiny dot.

DOXIL on deck

I've been on chemo for over a year, mostly IV chemo. Many folks ask me what is it like and what are the side effects? In my last post in October, I mentioned fatigue. And, yes, for me, that's the most frequent and critical effect.

I tried to come up with some condition that a non-chemo person could relate to that would help them "feel" what I'm going through. The closest thing I can think of is a very bad case of the flu. No respiratory symptoms for me (for the most part), but a continuous, unabated, relentless, fatigue; aches and pains; and brain fog. It's not for the faint of heart.

You lose your train of thought before you even reach the depot. A friend talks and you have a response but as soon as he stops talking, you forget what your point was. You even forget the topic. In those cases, it's just better to go out for ice cream.

Speaking of friends, I now have a 3-hour limit on how long I can be with friends. Luckily, that's also pretty much the extent of time most of my friends want to spend with me, so we're all good.

I just had a scan that shows a bit of progression to my liver.  DANG IT!!!! @#$#!^%*(&&

OK, I'm better now.

I start on Doxil next week. Doxil is a kissin' cousin of the dreaded Red Devil, Adriamycin or doxorubicin.  I call it killer chemo. Most patients call it killer chemo.

I was on a low dose of Taxotere, which thankfully kept my counts at a livable stage. But my cancer simply scoffed at that, "Ha ha, I'll show YOU!! You think you can kill me without killing yourself?! Got another thing coming, girlie."

And so the bugger came back. It's a delicate balance between getting enough chemo to damage the cancer cells without doing permanent damage to my dear person as well.

It's just an all-around CRAP SHOW!!

So, onward and upward to Doxil, may the best (wo)man win...

I'm just so TIAAAAHRD!!

Having cancer brings many symptoms. Many of them are not fit to be discussed in polite society, but the main one suffered by all is FATIGUE.

I always feel lame when I complain about fatigue--after all, who among any of us isn't tired? Tired nearly ALL the time? You ask how someone is doing, and they'll say, TIRED! I'm SOOOOO tired!! But they still manage to work, do chores, drive in traffic, take care of the kids, cook dinner or buy takeout, walk the dog, go to the gym, climb Mt. Rainier, etc. etc. They continue to lift one leg up after the other and walk toward some semblance of purpose. They continue to have coherent discussions.

The kind of fatigue we suffer is DIFFERENT. We suffer the kind of fatigue where you feel like you've been spinning on the Scrambler amusement park ride for two hours. Then you get off and try to find the nearest cotton candy stand. Not to eat it, but to arrange the sticky stuff on your head, as you lost your wig and/or your head scarf and your baldness is on display for all. Better to look like a pastel bouffanted poodle.

Or, the kind of fatigue where you step off a curb and get trampled by a herd of elephants, which you neither saw nor heard because you're so lost in the foggy web of your own cranial matter. As you pass out, you do remember wishing you could go to the circus later. If you weren't so tired.

But I'm mostly tired of this administration.  Ooh, tossed that one out there, didn't I? Ever since November 9, 2016, we've been faced with constant, unrelenting, displays of hatred, stupidity, ugliness, hypocrisy, corruption and disrespect from this President and his cohorts. Every day, he lies and/or says something unbelievably thoughtless or evil. And his followers cheer and cheer.

It really wears on a decent person after awhile. Makes me feel like, "Why should I want to live, if this is what our country wants to be?"

Such blind acceptance of these rotting shenanigans goes against everything I learned in school and in church (and from my parents and relatives). There, I learned that "cheaters never prosper", lying is the worst, and sinning was something you should avoid at your peril.

In politics and business nowadays, cheaters and liars are the ones who prosper. You're expected to toe a very specific and deceptive line to succeed in either place. In church nowadays, sinning is a prerequisite in order to be considered an acceptable Christian.  God is someone you negotiate with. "Well, I did this sin thing, you know, giggle giggle, but so, you forgive me and I worship you and we'll be good right? And I promise to sin again real soon so we can do this over and over.  K'? K'. Oh, and I'll tithe, fer sure. 😉"

I remember hearing one "power preacher" recently say, "What has God done for you lately?" I cringed. In my church, we were taught to ask, "What have you done for God lately?"

That kind of selflessness is verboten today. Only for losers.

Having end-stage cancer and its treatment is hard to work through. Feeling that I'm fighting to live in such a wicked world makes me so very, very, tired.