My World.....Shattered

Just rollin' along, living life, working hard, hiking hard, and loving living in The Treehouse at Dragonfly Hill.

Jake was doing fairly well on the phenobarbital, with a few breakthrough seizures - until he had a severe cluster of three seizures over the span of a few hours.  My poor Bubby.  He would barely recover from one when another would strike.

And the look he would give me as a seizure was beginning was utterly heartbreaking.  In that split second before the seizure took over his body, his beautiful golden eyes pleaded with me to make it stop.

He knew what was coming.  I knew what was coming.  And it bore down on him like a freight train.

And there was absolutely nothing I could do to stop it.

I tearfully talked to the vet, and there weren't a whole lot of solutions.  Since he was beginning to exhibit toxic levels of the phenobarbital, his dosage couldn't be increased, and other meds weren't an option for him.

My beautiful Main Man, my partner, my goofball, my loyal protector, my love, my big cuddle bear, passed peacefully and quietly under the gentle and compassionate care of our vet on April 23, 2016, with Piper and I by his side.

Rarely does a dog touch one's soul like Jake did mine.

Rest in peace, my sweet boy.

No more seizures.

 

Catching Up - Part IV

April 2016 rolls around and it's already time again for the next twice-yearly CT and oncologist visit.

Back in the chair again.

Robert and Tien - and goofy shoes and socks.....

Doesn't everyone wear butterfly Gobys to the oncologist?

Poor Dr. Hampshire had an awful cold, but he still ROCKED it by pronouncing
me still stable, and giving me one of his cherished A+ smiley faces on my report!

Chicken Marsala - um, YUM!

Catching Up - Part III

In November 2015, Jake and Piper and I moved to The Treehouse and began adjusting to and LOVING mountain life.  We got to know the neighbors, began discovering the plethora of hiking trails nearby, and experienced our first snow here.  It was glorious to finally be living again where there are seasons!

Sadly, this was also the time that our lives would take an unexpected, awful turn.  

My beloved Jake began having seizures.  Just completely out of the blue - terrifying, violent seizures.  Any animal in the throes of a seizure is awful to watch.  But a 110-pound Rottweiler having seizures in a small space is horrific.  The potential for him to severely injure himself is very real and very frightening.  

Now it was Jake's turn for diagnostic imaging.

We had all the testing done - MRI, labs, and evaluation by a canine neurologist - but there was no discernible reason for the sudden onset seizures.  No brain tumor, no blood or organ issues.  Nothing.  The vet diagnosed him with idiopathic epilepsy and we began a twice-daily regimen of phenobarbital.

And we put one paw in front of the other and kept moving forward.

Catching Up - Part II

In October 2015 - during the time that both my old house and my new house were in escrow, I was selling my beloved vintage trailer Lil' Chick and frantically purging stuff to downsize from a 2-bedroom house with a dining room, enclosed patio, and garage to a 626-square foot tiny house - I had my twice-yearly dates with the Sharp-Rees Stealy Rad Techs and Dr. Hampshire the Awesome Oncologist.  Other than a couple of minor things that Dr. Hampshire isn't even worrying about, I'm still stable - life is GOOD. Woot!!!  See y'all in another six!

Jared the rad Rad Tech

I love the good news I get from Dr. Hampshire!

Catching Up - Part I

Wow.  I can't believe it's been a YEAR since I updated this blog.  Holy crap.  I'd been doing so well with keeping it current, then I slacked off.  Why?  Because there really wasn't anything of note in Cancerland.  Which is a damn GOOD thing.

But life kept happening - most of it great, some not so much.  Let's re-cap:

Since 2014, I'd been getting restless at my house in the city.  I LOVED the house itself, with its original 1947 hardwood floors, charming details, huge yards, and wonderful neighbors.  But I was in a very urban area, surrounded by gang violence, drug deals, and street racing.  At the time I bought it, it was right for me.  But as a few years passed, it became more clear that it wasn't where I was supposed to be.

And this cancer thing was a HUGE part of that.

I'm a Parkie, and have been since first volunteering for the National Park Service in high school, lo these nearly four decades ago.  Couple that with a Stage IV cancer diagnosis and a mantra of "life is short" and you get a spirit that yearns for something better:  for a small community, for wild spaces free of noise, crime, and congestion.

So I began looking at properties for sale a little further out, away from the city.  My commute to work was already 45 minutes to an hour each way, so what was a few more minutes on the road?  As fewer and fewer properties looked promising, I cast my net wider and began looking further away.  My ever-patient realtors trudged all over hell and half of Georgia with me, up and down rutted roads, into sketchy backcountry areas, to and from canyons and hilltops, looking for the right property.  With the types of properties I was looking at, my daughter and my bestie were concerned that I'd be too isolated and too far away from neighbors or help if something happened.  In a rare moment of acquiescence, I had to agree:  as much as I saw myself on a remote piece of property, the reality is that I have a disease that will require treatment at some point and may cause complications.  I needed to be smart about this property search.

I began looking in our little mountain towns:  there, I could be out of the city but still have the rural space and the small-town community that I craved.  After seemingly endless months of searching, I found IT:  my little cabin in the woods.  I put my city house on the market, put an offer on The Treehouse, was fortunate to have both properties close escrow on the same day, and moved to the mountains in November 2015.

And it's been the best decision I've ever made.  I make the 150-mile round-trip commute to work twice a week (and miss the traffic both ways since I leave early and come home late), and I telework from home the rest of the time.  I have clear mountain air; glorious birdsong; brilliant star-filled night skies; a deck that overlooks my little third-acre oak-studded mountain paradise that I've christened Dragonfly Hill; amazing neighbors with horses and chickens and goats; and unlimited miles of hiking.  My tiny house is just a little over 600 square feet, and it's perfect.

The Treehouse at Dragonfly Hill.

For me, I'll always feel like my clock is ticking.  And I'll always be cramming as much living into my days as I can.  Life is too short.  And it has a tendency to fast-forward WAY too fast.

What are you waiting for?

 Do.  It.  Now.





  

I'm Still Here.....

.....and still livin' life.  But, I was a bonehead and lost my blog username and password and couldn't get in - UGH!  Until today - SUCCESS!  I'm IN!

Now that the username and password have been summarily recorded and saved, I will be updating the blog soon.  Stay tuned!

The Latest 6-Monther

It's an interesting thing, living your life in 6-month increments, leapfrogging from one CT scan and oncology appointment to the next.  

For 5-1/2 months, everything's blessedly normal - work, errands, camping, yard work, etc. - then about two weeks prior to the next CT appointment, the scanaxiety kicks in and BAM! The bus traveling through Cancerland veers off the road and into a big fat gloppy mudhole, where it remains bogged down in worriment and dread until the CT results roll up, hook up their chain, and pull it out of its quagmire.

Yeh, I know:  I'm a drama queen.....  

Many people told me not to worry, that this CT will be fine - I've been feeling great and remain asymptomatic.

To which I was always responding in my head:  YEH, AND I WAS FEELING GREAT AND WAS ASYMPTOMATIC WHEN THIS CANCER THING WAS FOUND BY ACCIDENT!

The fear is always gonna be there, that this slow-growing cancer will morph into a more aggressive form (or threaten to cause havoc like it did in 2013 when we had to beat it back into submission with the Rituxan cocktails).  From talking with friends who have undertaken their own cancer battles, I've learned that the worry is a normal part of living with a cancer diagnosis, even during glorious days of remission.

So last week, I donned one of my fav shirts and high-tailed it up for my latest date with the Radiology Techs.

Since I'm always seated in the same chair for IV insertion, I always seem to pose the same way:

I will never tire of those delicious warm blankies!

My view from the IV chair.  Dork.

As soon as I was IVed up, Jared the Rad Tech set me up in the CT room for my next photo shoot:

The Rad Techs are always so efficient and fast - I was finished in just a couple minutes.  I told Jared he's like pit crew on the Indy 500.

Another CT scan in the can!

After the CT, it was off to a doctor appointment for a horrible month-long toothache I've been having. Wait, what?  A doctor appointment for a toothache?  Um, don't people usually see a dentist for that sort of thing?  Well yes, people usually do - but HUGE dental phobics don't.  

Stage IV cancer?  Piece of cake.  Dentist?  Oh HELL no!  (bad childhood experiences, choking in the dentist chair in my 20s, etc. etc. etc.)

A few weeks prior, I had called my primary doctor's office and told them my tale of dental woe and he gave me a prescription for 600mg ibuprofen 3x daily (the multiple Aleeve I had been downing on a daily basis wasn't touching the pain).   

Alas, the doctor told me she couldn't really do anything for me, and told me to see the d-d-d-d-dentist. After a month of enduring this pain that felt like a horse kicked me in the jaw (and ear and throat), I gave up and headed straight to the dentist and got right in without an appointment (oh goody).

Actually it wasn't bad.  I've been in so much pain that it honestly felt good to be getting to the root of the problem (so to speak).  X-rays revealed a small infection in a broken tooth.  When the dentist pointed it out on the x-ray, I screeched "That's IT???  THAT wee spot is the cause of my ceaseless torment???" (told you I was a drama queen.....)

We made an appointment for an extraction in May (I got a camping trip coming up - I don't want to be post-extraction on a camping trip!) and he sent me on my way with prescriptions for antibiotics and Vicodin.

I'd say I handled it pretty well:

Today, however, was the best day of the past week:  I got to visit with my Awesome Oncologist, Dr. Hampshire.  

Selfie with my onco homeboy, yo.....

Why was it the best day of the past week, you ask?  Because my CT was perfect and my bloodwork was perfect, even with fighting the tooth infection.

Can you say R-E-L-I-E-V-E-D???  

I LIVE for those good report cards from my Oncologist!

And as for you, Scanaxiety:

 

  

 

Something I've Never Done Before.....

I have never felt compelled to contact my elected representatives on any issue.  Sure, there are a lot of things that I feel strongly about - but I always thought, "What good would one single letter do?"

Until Brittany Maynard told her story.

If you recall, Brittany was the young woman diagnosed with glioblastoma, an aggressive and terminal brain cancer.  She wanted the right to end her life on her terms and on her own timeframe, but her home state of California (mine as well) has yet to allow death with dignity, otherwise known as aid in dying.

She and her husband uprooted and moved to Oregon, one of the few states which allows terminally ill, mentally competent individuals to receive a prescription from their doctor for medications to self-administer to aid the dying process.  Read Brittany's story here.

Brittany, her husband and parents, visiting Grand Canyon,
fulfilling one of her dying wishes.

Seeing Brittany's videos and hearing her profound words resonated with me.  Especially when she said, "I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don't deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?"

I know there are people who are firmly and steadfastly against aid in dying.  And to them I say, "Then don't do it.  But don't deny me the right to do it." 

Over the years in my state of California, the issue of death with dignity has been debated, proposed, defeated, and proposed some more.  Brittany's story has again brought it to the table, and it will be reviewed again in the near future.

This time, however, it's personal.

In a nutshell:  People who don't know me will be deciding how I die. 

Yep, it's that simple.

BD (Before Diagnosis), this was purely a rights issue for me, albeit an abstract one:  something that I supported, but something that would affect and benefit "other people."

AD (After Diagnosis)?  It's a whole 'nother ballgame.

I know terminal diagnoses.  Both my parents died from shitty-ass cancers (lung and ovarian).  They were from the generation that didn't dispute what doctors said.  If your oncologist said that at 77 years old, you needed a second round of horribly devastating chemo, you didn't argue.  You just went along with it.  And suffered terribly.  My mom ended up bedridden, diaper-clad, and uncommunicative for months before she was finally free.  Had the option been available to her, I know she would have chosen to make a lucid and peaceful exit long before that.

Right now, I'm lovin' life, and life is fabulous.  But I know there will come a time when it's not.  And I want to move on to my next adventure as Brittany did:  on my own terms and on my own timeframe.  And I don't want to have to uproot to another state to do it. 

Which is why last week I wrote old-fashioned letters, mailed in envelopes with stamps (!), to ten of my elected officials, ranging from County representatives all the way up to the Governor.  I told my story as simply as I could, and urged them to support legislation that would allow death with dignity in the State of California.

Knowing that my letters will at least make it into the hands of support staff of these elected officials makes me feel like I'm doing something to perhaps effect change, not only for me but for other Californians facing a terminal diagnosis.

To learn more about death with dignity, visit the national advocacy group Compassion and Choices:    https://www.compassionandchoices.org/

 



 



 



 

Geez! It's About Time for an Update!

Wow - it's been 16 months since I updated this blog!  Time flies when you're having fun, right?!?  Life continues to be blessedly normal for me, and I am utterly grateful for each and every single day.

There have been some fun things happening over the past 16 months, but the very best thing to occur was my latest 6-month CT scan and check-up with Awesome Oncologist Dr. Hampshire on October 8, 2014.

The CT scan, as always, was quick and painless, and always a joy with Tien, the fabulous rad tech that's done just about every one of my scans since I've been going there.

Dear Tien - such a ray of sunshine!

Two days later, it was off to see Dr. Hampshire, who gave me sweeeeeeet news:  REMISSION!

Happy patient and happy Oncologist!

Gotta love the "R" word!

I'll never kid myself that this means the pesky stupid-ass cancer is gone - this type of lymphoma is not curable, but can be treated when it rears it ugly head.  But for right now, it's keeping its stinky self hidden and not causing any problems.  YIPPPPPIIIIEEEEEE!!!!!

And it's a good thing:  I'm WAY too busy to be a cancer patient right now!  Life is (as always) GOOD and I'm staying busy and happy.

A few highlights from the past 16 months:

I was promoted at work - I'm now the Administrative Officer at Cabrillo National Monument and got to move into the big-girl office.  This year marks 25 years that I've been at Cabrillo, in a succession of increasingly more difficult positions.  This one is the most challenging and complex, to be sure, but never boring.  And you can't beat my office and view!

Home Sweet Home

The Million-Dollar View

My adorable teeny tiny trailer, "Lil' Chick," was in her very first vintage trailer show in Pismo Beach - what a blast that was!  It was so much fun to camp with a bunch of girlfriends and proudly show off our homes-on-wheels!

Lil' Chick receiving her adoring public!

And because one trailer is never enough, I bought another!  The second one, though, is my campin' trailer.  Yes, once I got Lil Chick's makeover completed, I camped very comfortably in her.  But for a little thang, she is pretty high maintenance!  Not mechanically - she's only got electric, and no plumbing, battery, propane, etc. to give me any problems.  No, her Diva-ness comes from all of the staging that has to be done:  once stopped at a campsite, pictures have to be hung, knick-knacks placed with care, chairs and crowns and chandeliers set up outside (yes, chandeliers - this is glamping, after all!), and a whole truckful of "stuff" has to be set up for her to shine to her full and glorious potential!  It's fun, but time-consuming and exhausting!  Sometimes a girl just wants to camp, ya know?  So I added sweet little "Wren" to my fleet - she's a 2002 17' Casita, and I adore her!!!  She belonged to a fellow Sister, so I was thrilled that we got to keep her "in the family!"  She's so much easier to camp in than the Chick, and she has all the amenities:  hot and cold running water, stove, fridge battery, holding tanks, and - wait for it - a REAL potty AND shower!  Love me some indoor plumbin'!


No, it only LOOKS like we're on the moon - it's really Ocotillo Wells.
Wren is in the middle.
 

She had been well cared for by her previous mommy, so all I had to do
was put a little paint on cabinet doors, configure a permanent bed, add
some new fabrics and she was ready to go!
 

I flew to Seattle and took in the Sequim Lavender Festival with two of my besties.  It was our first time, and we had a ball!  We also journeyed to the most northwesterly point in the United States, took the ferry to Victoria where we toured Butchart Gardens and experienced their lovely afternoon tea, and saw the fish fly at Pike Place Market.  What a grand adventure!

Breathing in the intoxicating scent of fresh lavender!

 
And because the world is too fabulous to always remain in one place, I got a tattoo:

 

Appropriate verbiage for my body, yes?
 

This Lymphopixie isn't letting that annoying Stage IV diagnosis rule her life - there WAY to much traveling and progressing and adventuring and accomplishing to do!!!

Today's Lesson: Don't Cough So Hard That You F**k Up Your Ribs

Soothing earth tones and nature graphics, soft lighting, hushed quiet.  Ahhhhh.....looks like a nice relaxing waiting room of a peaceful spa, right?

Wrong.  It's the waiting room for Urgent Care, which is where I was last night after work.

Seems that there's these bones in your chest called "ribs" and when you cough too forcefully, they can become shifted, dislodged, or fractured.  Oh, and it will cause STABBING PAIN every time you breathe or sleep or try to cough.

Yippiee!

Wednesday afternoon I was talking with my boss at work and launched into another coughing fit; in the midst of my hacking, I felt a "pop" in my upper side/chest and then shooting pain.  Wonderful.

By Thursday afternoon, it was bad bad bad, so I made a detour on my way home from work and stopped at Urgent Care.

Since I just had an x-ray a week ago to rule out pneumonia, the doctor didn't want to do another because of all the radiation.  And, even IF an x-ray showed a rib issue, there's nothing they can do about it.

Lovely.

But she did swaddle me in a nice, tight rib band, which feels so good!  I'm supposed to wear it during the day, and it really seems to help.  I'm to stay on the hydrocodone/homatropine syrup at night (LOVE that shit!), and do the Benzonatate pills and OTC cough syrup during the day, supplemented by Motrin.

It's ironic that I have Stage IV NHL, was on watch-and-wait for a year and a half, and went through four Rituxan infusions, and have basically sailed through it all with no problems - but I'm sidelined by a stupid rib injury caused by coughing.

How do I feel about that?

 



 

Hack, Hack, Gag, Sputter - The "Rituxan Cough"

Beginning about week two of the Rituxan infusions, I developed a slight tickle in my upper chest that would cause me to occasionally cough a little.  Because one of the side effects of Rituxan is a cough, it was really no big deal.  Looking back, I can now see the progression from that annoying "slight tickle" to the full-blown alien-trying-to expel-from-my-chest thing that's become part of my life.

I had mentioned the cough to Dr. Hampshire at my most recent appointment, on the day of my last infusion on August 23; since it was still just annoying at that point, he said to keep an eye on it and let him know if it got worse.

After many nights of no sleep, sitting upright, and slugging over-the-counter cough syrup and cough drops all night - and dislocating a rib and pulling chest muscles - I finally gave in and contacted him last week.  He ordered a chest x-ray, just to be sure it's not pneumonia or an allergic reaction to the Rituxan; when the x-ray came back normal, he prescribed Benzonatate (tessalon perles), a little round gel-cap cough pill to take three times daily.  Since I could manage the cough during the day by using cough drops, I saved the Benzo for nighttime use.  My routine became taking a Benzonatate before bed, washing it down with a big dose of max-strength OTC cough syrup, and sucking on a cough drop as I fell asleep (sitting up, of course).  I'd be good for maybe an hour or two, then would wake up wracked by a shuddering, convulsing cough and stagger into the bathroom to do the Benzo/cough syrup/cough drop trifecta again.  Wash, rinse, repeat.  All night.  UGH.

Yesterday, after penning another whiny email to him, Dr. Hampshire called in an Rx for cough syrup.  I fully expected the normal prescription of a small bottle of cough syrup with codeine.  What I got, though, was a one-pint "bulk container" of Hydrocodone/Homatropine.

Huh?

Of course I jumped on the web to find out what this was.  Turns out this is the big guns.  Hydrocodone is an opiate component of vicodin, and homatropine is a neurotransmitter blocker.

Yeah, buddy!!!

Last night was my first time trying the H/H and.....

.....drum roll, please.....

.....I slept ALL night, for the first time in a month!

I only got up once to go potty, and I didn't cough AT ALL. 

Wow - that's some potent shit, blocking neurotransmitter messages and inhibiting receptors and all.  Kinda frightening, since taking too much will cause respiratory suppression.  YIKES!

Dear cough that has been vexing me for the past month: Your days are numbered. I have a new favorite bedtime cocktail that's gonna kick your ass.  Take THAT, you sleep-depriving, chunky-gunk producing tormentor!

  

August 23, 2013 - 4 of 4!

The fourth and (for now) final Rituxan infusion is in the can, baby! WOOT!

Friday began with an office visit with Dr. Hampshire the Awesome Oncologist, where we went over how I've been tolerating the Rituxan.  Very well, thank you!  With the exception of the cough that appeared during week 2 and the occasional fatigue, all is well in Rituxanville.  Since it takes 6-8 weeks for Rituxan to fully conclude its job following the final infusion, we scheduled a CT scan and office visit for October.

Then I made the short walk next door to the Outpatient Pavillion for the infusion.

I was in the chair by 9:30 AM and napping soon thereafter.  When Arlene the wonderful nurse said "Are you ready to go home?", I had no idea what she was talking about.  I thought something happened and they couldn't do the infusion, but she said "No, you're done!" 

Wow - talk about falling asleep HARD!  It was 12:30 but felt like only a few minutes had passed.  Alrighty then! 

Ran some quick errands on the way home, then took a little nap - apparently to recover from the hard napping I was doing at the infusion center!  Woke up feeling great and ready to put in a couple more hours of work on my little trailer.

With my next CT scan and oncology visit not scheduled until October, I feel like I've got a reprieve for a few months.  Not that the infusions or lab visits for bloodwork were bad; they were just a constant reminder of my extended stay in Cancerland.

Now, until October, I'm FREEEEEEEEE!!!!!

The next day, I was up bright and early to meet the 'Bad Tink team on the shores of our beautiful Mission Bay for the first session of this season. 

As Honored Teammate, I was going to be speaking to the Team, but didn't prepare anything.  I wanted to be able to speak from the heart.  It was an incredible honor to be able to stand in front of them, less than 24 hours after finishing up a series of four immunotherapy infusions, and show them in person what their fundraising dollars do.  Sixteen years ago, if my oncologist told me that my days on watch-and-wait were done and I needed to begin treatment, it would've been straight to chemo and its toxic side effects.

The FDA approved Rituxan as immunotherapy treatment for follicular Non-Hodgkin's Lymphoma in 1997.  Prior to that, Rituxan didn't exist as an option. 

Rituxan was made possible in part because of the millions of dollars funded by The Leukemia & Lymphoma society for research and development.
 
And those dollars are raised by Team In Training athletes.

Quite a successful circle, I would say!

It's my hope that each runner and walker who listened to my story understands just how gratefully appreciated their fundraising is, and that every dollar MATTERS and is making a difference TODAY.  Right in front of them.




So grateful to each and every Team In Training athlete.
 

Thank YOU.

Because I'm still SO not a runner, I joined the Team walkers for their two miles along the bay, then finished up the morning chatting with this season's wonderful Teammates.

 

Then it was off to Home Depot for more stainless screws for my trailer project.

 

Because life gratefully goes on!