We Keep On Waiting

And..................we wait......

In the meantime, here's my update on Jolynn who hit Day Plus 100 six days ago, a traditional milestone for bone marrow transplant patients.  The OHSU team continues to deliver great news about her bloodwork results at her weekly visits to the Knight Cancer Center at Portland's waterfront.  The security in that building has hit a new high, completely forbidding me to even get on the elevator or wait in the lobby so she goes to her appointments by herself.  We've been worried about her weekly weight loss, likely due to her acute GVHD issues but the liquid steroid is helping her stomach welcome food.  Her task:  Consume Calories!  This morning's grocery delivery will bring many flavors of her non dairy ice cream and lots of yummy treats to help her put weight on.  And it's working.....yesterday's clinic visit delighted us with the news that she has GAINED 6 POUNDS!  Wooooohooooo!  As she eats her non-dairy Ben and Jerry's chocolate ice cream, we wait for her results of the bone marrow biopsy.  Expecting more good news!

I, on the other hand, am trying NOT to consume calories. 
Yeah, right.

Looking out the windows for tidbits of gratefulness.  The birds are gobbling up the food in their window feeder and the deep purple Irises are standing tall with Miracle Gro in their thankful roots.  A dozen Extremely Fragrant bare root roses from Heirloom are on their way to our English gardens so I'm perusing the yard, gleefully looking for a homesite for each rose.  Cub has relocated to our Portland address and her double bagger behind my seat brings me joy. The vase of spectacular pink Lillies sent to us for Mother's Day from Hannah and Alex still permeate the kitchen.  Bear and I gently swing on the big blue saucer swing in the backyard while I tell him how much I love his sweet face.  Trish pops in occasionally to sit on the deck under the gigantic Wisteria with us and often she will vacuum the downstairs just for the hell of it.  Mary and Ryan stopped over with adorable 11 month old Rory last weekend and we hung out in the freshly mowed back yard.  We hired Ken to help with a task in the vein of getting the farm property ready to sell and that was a productive day....... waiting for the farm to find a buyer.  A good friend of Jolynn's sent us beautiful homemade masks in the mail from San Diego while we wait for .... I don't know what ....  a vaccine? The groceries? The biopsy results? The roses?  Motivation to keep writing?

November?
  ha

Finding gratitude in the interim.  Our amazing HC turned 30 a few days ago and in just a few short months, she will graduate with her masters degree in NYC.  I had to cancel my plans to be there for her birthday and I won't be able to fly there for her graduation and that is the outrage that I'm trying to console with gratitude for bare root roses and Bear's sweet face. 

And all the while, we are waiting, waiting, waiting on the world to change.....

                                                          John Mayer
                               https://www.youtube.com/watch?v=oBIxScJ5rlY

Fire!

That's three years of pruning debris on our two acre farm property, going up in smoke.  Rural counties have "burn days" and yesterday was one of them so we took the opportunity to get rid of the huge pile of brush and branches in an attempt to get the property ready to be put on the market.

Okay.  Have your opinion about it.  Whatever.  Be careful up there on the mountain top, in a glass house.....everyone has a rock in their hand in this firestorm society as we wait for the winds to change direction.

It's May 1st.  May Day.  May Day.
We are hunkered down in the blaze of the quarantine..  I've mastered the art of ordering groceries simultaneously from 2 different stores.  No, I'm not overstocking.  We have all sorts of diet restrictions in this household so it's tricky to get what we want....."you can't always get what you want....but if you try sometime, you find you get what you need..."  Love that Rolling Stones song. Just love it. 
Here it is for the hell of it:

https://www.youtube.com/watch?v=jv9sDn_2XkI

So, I'm just burning to tell you the news that Jolynn is still doing well!!  Her counts and numbers and bells and whistles are clamoring for the new normal.  A liquid steroid helps her stomach issues, which helps with weight gain.  She is at Day Plus 92 today......the honored day of Day Plus 100 is next Saturday, May 9th...marking a milestone for Bone Marrow Transplant patients.  May is Jolynn's month.  Her birthday is on Monday; then there's Day Plus 100 and then there's Mother's Day! So many reasons to step up, step out and smell the Lilacs! 

And the Wisteria.
And the Honeysuckle.
And the Roses.
And all of those other luscious flowers in our English gardens at our new home in Bean Town.

How I worship my flowers........  While some are protesting so that they can go back to the taverns and be exposed to a deadly virus (yes, please do), some of us are content to let the smoke clear and loll and bask in the tranquility of solitude and pretty petals. 

Closing off the raging stupidity, I give myself a break from headlines.  I have to practice restraint from a full blown rant.  The sweet, innocent faces of our pups snap me back to joy and gratefulness while I contemplate patience and why I need more of it. 

Meanwhile, my little wildfire sweetheart in the big apple continues to recover.... good grief, what a year this has been so far...and it's only May. 



                                                        The Pointer Sisters!
                                   https://www.youtube.com/watch?v=rarro42uIVU

Slow Mo

Extreme worry has paralyzed whatever creative neurons might have been lurking in my red head these past few weeks.
But,
           
                             My NYC babe is going to be okay.....she's coming out of the woods.
                                             .................Exhale..........
                   
Meanwhile, in the city of roses, there's pruning, fertilizing, weeding, nurturing, adoring going on in our yard.  We haven't been in this property a whole year yet so there's lots to explore.  Sitting next to the leaded glass multi paned windows in our living room,  I can watch the leaves on the rose bushes emerge slowly in the warm sun, glimmering with their newborn leaves.  Outside, the lilac bushes are ripe with deliciously scented petals that whiff through the large Rhododendrons as we work and swing in our yard, oblivious to quarantine.  It's not until I go inside and read the plethora of news articles do I remember the bullshit going on in this country.

Why is Karma so laid back?  I want to arm Karma and send it out do it's job.  Start on the Florida beaches dear Karma...go, go sprinkle your kismet to those who taunt you....the protesters, in particular...the whitey carrying swastikas, the trumptillian, moronic imbeciles of the shameful republican party.  Bullseye. 

Two shuffles forward, one shuffle back.
Jolynn is at Day Plus 74.  The path is bumpy, laden with stomach issues and nausea and vomiting and lethargic afternoons.  It's not one big happy adventure.  The weekly clinic visits continue to show excellent blood counts but her weight is a yo yo.  Food still doesn't please her no matter how we try to get variety and healthy options, delivered to us by our online neighborhood grocer.  I continue to research the whole bone marrow transplant universe because I need to stay informed, to focus on the big picture, to keep it real.  I found an article on the American Cancer Society that I will post here in case anyone else is as interested in the facts as I am.  The struggle is real.  Documented.  She's on a well worn path, a gravel path that isn't always pleasing with bare feet.  But still we go forward with hope.
                                       What to Expect:
https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/stem-cell-transplant/transplant-side-effects.html

Jolynn insisted on helping me plant some flowers last week.  She has good days and bad days while she waits for her hair to grow back, ever so slowly.

Moving Slow and it's alright.
       
                                                                Curtis Mayfield
                                      https://www.youtube.com/watch?v=6Du9pCalSCU

FREE!!

                                                        CANCER FREE RESULTS!!

Keeping this short so I can return to my beloved yard work, Jolynn has just received news from her doctor that her bone biopsy results show no P53 cells, calling it "really great news!".  

                                                                        WOW!!

The next test will be after her Day Plus 100 bone biopsy and that's a ways off.  Today is Day Plus 59.  On May 9th, right after her 67th birthday, she will be unleashed from many of the drugs that she is taking right now and will be able to roam freely in the world....if the world is letting people roam freely by then.  

This was the test we were waiting for - the green light for 100% cure of cancer!  We are elated! 

Wooooohooooo!  We are celebrating!

So the moping ends here.  The redhead needs help now - Jolynn is back on track to snap out of it and put that tool belt back on! Time to move forward with confidence and seize the day, dammit!



Come On!
                                https://www.youtube.com/watch?v=UWLIgjB9gGw

Is it still April?

Good fucking grief.

It feels like we've been in solitude for six or seven months!

    Oh yeah.  That's because we HAVE been quarantined since people started putting pumpkins and bales of hay on their porches in preparation for Halloween back in the fall of 2019.....decades and decades ago. Jolynn's cancer diagnosis with her low white cells shunned us from society long before it was popular to wear masks and hide out in the house.  I'm not complaining.....just sayin'.  

            I want to frolic at a jazz festival on the river with thousands of people 
                 waiting in line at the same food booth with me, cutting in line, 
                           dancing in line, coughing freely into the air! 
         
I know, I took it one step too far.  But the sentiment bears acknowledgement, no?  

His disappointment that I wasn't a boy pretty much shadowed my young life.  My parents had five girls before they suddenly had 2 boys.  The same doctor delivered each of the daughters and my dad told the story of his somewhat humorous yet also very sincere response to the doctor to "take her back and bring me a boy".  Parents could get away with that kind of joking around back in the sixties. Today, they would be scorned and stoned on Facebook before they could even get to the hospital parking lot.  So I reluctantly had to learn things I really didn't want to know about when I was growing up as the oldest of 7 hooligans in a bizarre family. That's a whole blog onto itself.  I learned to drive a tractor when I was 3 and I could change cloth diapers with real sharp pins when I was 5 because I had to pitch in and earn my keep.  Approaching learner's permit age, I was given lots of leeway to practice driving - that's the good news.  The bad news is that I had to drive my dad's big truck with a huge truckbed and a stick shift.  I earned a driver's license the hard way but I wouldn't have it any other way.  I remember my dad telling me "When you're driving, always assume the other drivers are assholes" and I took him at his word.  That's why I'm a damned good driver to this day.  

We had to sneak out out of our home in Portland this morning to drive an hour for a few urgent errands.  They were URGENT, don't yell at me.  I drove my car, Jolynn drove her truck.  It was blissful.  As I was driving on the back roads and on the highways to the countryside, I remembered my dad's words and I was thinking that I had to assume not only that people were assholes, but also that they had the CoVid 19 virus. It was nerve wracking...all of those infected assholes driving around me, out to get me. 

I wonder if they were all thinking the same thing about me.

Aside from urgent errands (yes, urgent!) in town, we also had to go to our farm house that will be going on the market one day soon.  We ate our packed lunch on the porch with the pups and the rain.  Quite lovely.  I was thinking about my grandma.  Thirty five years ago I visited her at her trailer not too far from Pittsburgh.  She had a home when I was little but she had moved into a trailer at some point while I was off being a teenager.  Her place was always filled with plants.  This one day, before my daughter was born, she took me inside her cramped kitchen and gave me a tiny little tree in a pot.  The tree was the size of a palm, the palm of a hand.  Go ahead, look at your hand to see how short that tree was on that summer day.  Against all odds, with all of my odd moves, I was able to keep that little tree alive.  It now sits in the carport at the farm house.  It is sheltered because is is a sensitive tree so I have to water it regularly.  

Yes, that's my tree.  See how beautiful she is, growing in the carport!

Like I said, our errands were urgent.  We didn't touch anyone.  We didn't breath in anyone's breath.  We didn't stand next to anyone or wipe our noses on anyone.  

We are safe.  No accidents.  No germs.  No dancing in lines.  No dancing in the streets. 😊

Yet.


                                      Martha and the Vandellas!

                       https://www.youtube.com/watch?v=CdvITn5cAVc

1955

                     

So, yeah, Medicare.

Commercials that boom out "Attention Medicare..." in those awfully loud volumes with the American flag in the background always seemed to be aimed at someone else,...they were annoying....they just didn't pertain to me.  That was then.

Now, I pay attention.  Most of the people I sat next to in the small gym in a small town in late spring of 1973 are 65 this year and likely they are paying attention to the Medicare commercials, too.  Sigh.........that's just where we are now.   

A lot of life happened since I left the gym that day, a cocky 17 year old with very little fear, very little faith and a hell of a lot of audacity.  Brazen behavior paved the way for my life like the cobblestone streets in the city where my parents were born.  Bumpy, misshapen bricks, dings and ditches and colorful crevices - that's the road I took to get from there to here without looking back.  Disdainful, yes.  Disrespectful, no. 

The recent news stories of young people taunting seniors, licking their doorknobs, hoping that the CoVid19 virus kills off the old people...well, that is intriguing.  On one hand, those recounts feel like the epitome of "fake news" because I know quite a few young people and none of them are malicious.  On the other hand, there are copious examples of evil amongst us, from coast to coast with innumerable tentacles from the lower Maryland area.  Why should I be surprised with reports of vile youth when there are old fuckers like the Texas Lt Governor who want older people to just volunteer to give up their lives - as in DIE - so others can go back to work. Oh my.  There's so much I could say right now.....but shaking my head as I write this is just going to have to suffice. 

Maya Angelou said:

We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.

I have long since come out of the cocoon, emerged, flew, flew some more, here, there, everywhere and have landed safely to rest awhile.  I am embracing my age, my faded freckles, the crow's feet around my brown eyes, the caution in my step, wisps of gray hair and the deep, patient, breath I take before responding to stupid shit.

Still courageous, I'm trying not to be cruel.


About Jolynn:
   She continues to do well.  No longer needing bags of IV magnesium, her weekly visits to the cancer center are streamlined.  I am not allowed to accompany her on her visits but she does well on her own.  All of her numbers are right on target; no side effects except for occasional nausea and although she has lost a few more pounds, her medical team feels that she is recovering extremely well.  We will get more results from her bone biopsy in the next 10 days. 

 Hear Hear - a toast to my bricklayer dad and cook mom, both long gone.  Their oldest butterfly is 65 years young this year; she's not going to give her life so others can go back to work and she's not going to ignore the Medicare commercials anymore.  She's not going to lick the doorknobs of her young neighbors.  She IS going to eat birthday cake and VOTE in November. 
That's for damned sure.


                                        Ahhh, Elvis......
                    https://www.youtube.com/watch?v=ViMF510wqWA

Things That Make You Go

Hmmmmmmmm

Just cruisin' through my IPhone photos on a Quarantined Saturday Night....

                                                  Music!
                                         https://www.youtube.com/watch?v=XF2ayWcJfxo

Doctor,

The Doctor Called.

We spoke with Dr. Meyers on the phone this morning, as planned.  It's always educational and a tad frightening to have a discussion with the experts.  Details slip out that feel like new information but really, it's just information that wasn't forthcoming in previous discussions.  Nevertheless, the news is good, today.  

Today's discussion introduced the P53 gene.  

    Here's the official description (looked it up after our conversation):

        p53, also known as TP53 or tumor protein is a gene that codes for a protein that regulates the cell cycle and hence functions as a tumor suppression. It is very important for cells in multicellular organisms to suppress cancer.

Last week, Jolynn had a couple of extra blood tests designed to divulge information about the amount of old (MDS) cells in her blood and the amount of the new (Jan's) cells in her blood.  Dr. Meyers told us that, in her blood, she has 100% new cells.  Excellent news!  The bone biopsy that was done on Tuesday retrieved cells from her bone and when those results are in, we will then know the percentage of old cells and new cells in her bones.  The experts will specifically be looking for P53 in her bone cells.  We should have those chromosome results in about 10 days.  This will be an extremely important finding in the research of whether Jolynn is completely rid of the MDS or if there are any remnants of MDS still left in her body.

Jolynn reminded the doctor on the phone that we were told a few months ago that all of the cancer was gone.  
                    Silence

Then, Dr. Meyers reviewed the story of "blasts" with us.  She told us that healthy people have around 1 - 2% blasts in their body...baby cells, officially called "myeloblasts"; i.e. immature cells in the bone marrow.  Jolynn has "less than 4% blasts" in her bone marrow, according to the recent biopsy.  When we first embarked on this journey back in October, Jolynn was diagnosed with 7% blasts with high risk MDS.  We learned that Acute Myeloid Leukemia (AML) usually has at least 20% blasts.  Since then, we have also learned that AML can be diagnosed if the blasts have a chromosome change that occurs in a specific type of AML even if the blast percentage is less than 20%.  So, we are holding our breath, waiting for the chromosome results of the bone biopsy test.  We went into this chapter knowing that a bone marrow transplant was not a guaranteed cure.  Thus far, though, the results are good.  Her blood numbers are amazingly normal.  No obvious GVHD to date.  The good news comes with a shadow of doubt circled round it but we remain hopeful.

About GVHD.  Dr. Meyers reiterated that the drug Jolynn takes faithfully at 9am and 9pm, Tacrolimus, is keeping Jan's new cells "asleep.".  Around Day Plus 60, Dr. Meyers will start to back off the Tacrolimus, slowly waking up Jan's new cells.  It is at this point that GVHD could start to unravel......or not.  

Today is Day Plus 49.  We are skating around on thin ice, but we have warm cocoa and ear muffs and we are watching for cracks.

Dr. Meyers ended our call with the encouragement for us to go ahead and get that Thai food take out next weekend, a little earlier than the 60 day mark, but with instructions on how to be safe. 

My eyes have seen the years.

                               https://www.youtube.com/watch?v=x0GhjlmlEwQ

Lasagne Lasagne

We are paving new roads, aren't we?  Sure, some people already had the hang of ordering groceries online, but I didn't consider that endeavor until I was forced to consider it, last week.  As I get older, I find that following rules is just an easier path to take so I'm staying home.  Besides, I worry about the wrath of my soon-to-be 30 year old daughter who is monitoring my daily activities.  We laugh but she's not kidding about her insistence that I stay away from people and places - all people and all places, no matter what, so help me God. 

My first couple of attempts to order food fell flat like a half baked cake.  Three not heavy grocery bags came and each bag had 1 - 2 items in it.  Very odd.  I ordered something like 30 items and I received 7 items and half of those 7 items were not exactly what I ordered.  I needed ground pepper and they brought me peppercorns.  I don't have a peppercorn grinder.  Not the end of the world; I just put them up in the cupboard and one day, I'll consider a grinder when I can leave my house.  I'm nervous about ordering a grinder.  I might get an angle grinder, which actually would make Jolynn happy.  But I'll wait.  

In an effort to stock up on some frozen foods, I requested peas, green beans, lima beans (of course), carrots and I received ZERO.  Someone else has a freezer full of frozen vegetables.  I requested frozen pot pies.  Nope.  Not happening.  I clicked on frozen lasagne and okay, I did get 2 boxes of lasagne, what I thought would be single serving lasagne.   But each box of frozen lasagne was the size of a pizza box with enough lasagne for 14 families.  Yes, I exaggerate, but truly, my own family of 7 children back in the day couldn't have finished off this one box.  It was frozen so I had to bake the whole thing because I couldn't hacksaw out a small piece for my dinner last night.  Just when I resigned myself to the fate of leftover lasagne for the next 3 years, Trish piped up and told me to freeze it in small portions.  Brilliant.  See, I, too, am being home schooled.  

Fig Newtons are apparently not a sought after item during this quarantine. Yay for small favors.

Speaking of quarantine, because we never hear very much about it on every tv channel, every website, every radio program, every newspaper, every electronic highway sign, store windows, emails from every single business and organization and soon to be public megaphone announcements in our neighborhoods, the full blown isolation has now hit the Knight Cancer Center in Portland.  I was not allowed to accompany Jolynn to her bone biopsy today.  She sailed through the procedure because she has the medical team trained to give her the best sedation possible for the event.  I took the opportunity to walk the two pups in a nearby park, round and round and round, avoiding other walkers at all cost and touching NOTHING except the poop bags to pick up after our Bear and Rosie.  Jolynn's blood numbers continue to flow strong, beating all odds for recovery of her bone marrow transplant.  She is at Day Plus 46 and we can go to a drive through on Day Plus 60....preferably not Italian food for awhile, although that is my favorite cuisine. Her doctor will call her on the phone for their appointment on Friday and hopefully we will learn about the results of blood tests that check MDS (cancer) cells in her blood.  Fingers crossed.

Stinky Pinky made us some more delicious soup and we picked it up on our way home from the cancer center today.  My dad gave her that nickname 47 years ago. Blessed, I am, to have such an amazing, life long friend in my life and to share a tenacious, loving daughter with her, as well. 

At the medical center today, I watched nurse after nurse escort their patients to waiting cars in the pick up area.  The overflowing patience of medical staff astounds me trifold in this climate.  My own wonderful sister, Steph, is on the front lines of patient care with her outstanding deaf interpreting skills at a hospital back east, risking her own fragile health everyday to go to work and help others to understand their own well-being.  Alex, the partner of the daughter that Stinky and I raised, bravely travels the filthy NYC transit systems, daily, to work in a busy metropolitan hospital in the heart of NYC where CoVid 19 is exploding.  She valiantly shows up with her cheer and sweetness to be the Social Worker Extraordinaire whom she was meant to be at a time when most people are staying safe in the comfort of their homes.  When I think of my beloved Steph, our precious Alex and thousands of others who selflessly bridge the gap between saving lives and infectious menace, it just simply brings tears to my old, brown eyes. Just when I thought I couldn't be more grateful, I am.

My dad used to say "this drives me to drink" and then he'd laugh and pour another whiskey and water.  I got his brown eyes but I didn't inherit his compulsion to drink.  

Although I do like a good, strong fig newton on occasion. 

Sweetness abounds - newtons, family, friends, good people everywhere.

                         If you know me, you know it's my style to gift you with a song
                                                        You're welcome
                              https://www.youtube.com/watch?v=0Sg5CdItQwo

Well I'll Be Damned

Home.

Scores of daffodils popped up, waved in the sun and then disappeared over the years when I wasn't quarantined.  I probably noticed them because I have a love affair with flowers but I didn't stalk them like I do now.  No flower is going unnoticed on our property as I stroll the perimeter like a silent snow leopard pacing her confined dominion.  I have the time now to stop and not only smell the flowers but also pick them and put them in a vase in my art deco bathroom.  Petting their petals, I flirtatiously say "hi there sweetie...aren't you beautiful....you're new here...thanks for showing up" as I walk my daily rounds and visit each of our gardens.  Letting Spring amble into my life because I can.

My partner's bone cancer has slowed the pace since October.  On one hand, life has been more hectic with all of the many appointments and tests and long hospital visits, day in and day out.  There were days that I woke up crying and went to sleep crying and all of the hours in between were a blur. Halloween and then Thanksgiving and even Christmas came so swiftly and quietly while we held our breath for the bone marrow transplant in February.  Wiping down surfaces and wringing and washing hands were already routine when Covid 19 wafted in to our winter awareness.  We've been counting the days until we can get to  Day Plus 100 in early May - the time when my partner's body should be able to handle normal life.  But will life be normal in early May? 

No laundry piles and no unmade beds.  Kitchen wiped down spotless.  Mittens folded together on the antique coat rack in the entranceway.  Sofa pillows arranged methodically.  Spice cabinet organized.  Yup, quarantined.  

"What? A letter needs to be mailed?"
                  "I'll do it, I'll do it!" 

So we drove 45 miles to our favorite post office in McMinnville today even though our closest post office is point three miles away.  It' is surreal to see all of the empty parking lots of the stores and schools and businesses.  The huge digital signs overhanging the highways that used to announce how many minutes it would take to get to the next highway now say "CoVid 19 Avoid Crowds".  When I was a child, I must have been traumatized by black and white martian movies because now as we are driving along the mostly empty suburbs, I expect to see a gigantic orb hovering over the highways, sucking up screaming humans and wiggling dogs into the UFO above.  And is it my imagination, or is the sun starting to dim and flicker as we pass by streams of "closed" signs in the middle of the afternoon on a Friday in March?  

After our 5 hour trip to mail a letter, we arrived home hungry.  There's no drive thru stops for us.  Jolynn is not allowed to have restaurant food until Day Plus 60 - today is Day Plus 42. The age of "no contact drive thru" is slowly unfolding, at least it is being marketed like that on tv. I'm wondering how the food is going to be prepared when there's no contact - beamed down by Scotty?

Pulling up in the driveway, I noticed another new, beautiful bloom in our yard.  

Home.

Simple.

                                      https://www.youtube.com/watch?v=MniVeP3HIDA

Still moving strong....

So, wow.  A whole new set of rules.

Suddenly, we have a "personal shopper" - Jamie.  Our four adult kids do not want either of us to venture into public for any reason due to our immune suppressant issues.  Figuring out how to shop on line with the shelves empty is a new skill.  After I spent the better part of an hour getting a grocery account and scanning the pictures of food items to create a list, I felt relieved and took a shower.  When I picked up my phone, there were 15 text messages from Jamie regarding all of the items that they either substituted or refunded.  Jamie sent me an apology with this picture (see above) to let me know that there are NO frozen vegetables and they are out of many other items here in Portland.  Okay....  This is different.

At the Cancer Center (where we HAVE to go twice a week), I wear a mask.  My phone doesn't recognize me.  I don't recognize me.  Things are changing.

Jolynn's appointment yesterday went well.  We tried to convince them that we don't need to come in twice a week but rules are rules for transplant patients and their caregivers.  Jo gets at least one bag of liquid magnesium at each visit - yesterday, she needed two bags.  But her bloodwork and liver and kidney numbers continue to soar - the staff is quite impressed with her recovery! They urge her to be more active - to walk, to do things  around the house, to take in the breath of optimism that her body is trying to give her.  Around the edges of their confidence in her is the passive warning that they continue to check for re-occurring cancer signs.  Extra vials of blood were taken yesterday for tests that can reveal how much of her cells are her old, MDS cells and how much of her cells are the new, Jan-donated cells.  We should have those results next week.  Also next week, Jolynn will  have a bone biopsy on Tuesday so that the professionals can glean even more detailed information about her health.  We won't have those results for at least 10 days after the biopsy.  Remaining positive and hopeful can only help....and that's where we are at the moment, even in the face of all of this change.

Meanwhile, back on the ranch, I'm getting my bookwork done.  I'm getting very organized.  I'm getting a lot of sleep.  I'm getting cabin fever. 

Jolynn got on the riding mower with her face mask and a warm hat over her bald scalp and cut the grass yesterday. 

Jamie just arrived with our groceries.  And the beat goes on.......
 


                            https://www.youtube.com/watch?v=bS3O5zg290k

Be Safe 💙

The Dawning of the Age of Precarious

I put my phone down and then, without thinking, pick it back up.  On the commercials in between Olivia and Benson, I involuntarily reach for my phone and check the headlines to see if there are changes in the last six minutes, obsessed with the lack of order in this seemingly lawless state we find ourselves sinking into - the abyss of CoVid 19.  I read the new death toll out loud, even when no one except the pups are listening.  Abrupt text messages from family and friends ding as I become immersed with the details, the changes, the numbers and the lies circulating under these spacious skies.  I'm worried about the brotherhood from sea to shining sea because the big white house on the purple mountain is not - at all - majestic.  

At least two close family members are on the front lines, heroes, working in hospitals where droplets can run rampant.  I want to scoop up all of my loved ones and secure them in our home with locked doors with Colt cocked.  If you know me well, you know that I err on the side of ferocious when challenged.  The most challenging part of Right Now, for me, is ignorance.  But then again, the ignorance isn't any different from any other day here in the amber waves of grain and greed.

I have to admit that I am a bit of a hoarder.  No, not toilet paper or paper towels or Purell.  I hoard well made cotton socks and good quality linens and I probably do have more hair ties than a person should have in a lifetime.  If I end up in bed with CoVid19, I want to be on my own sheets, with my own socks and all of my hair ties in my hair to make a statement.  And my statement will be:

            Darlin', give me a head with hair, long beautiful hair.......
                           
                                            https://www.youtube.com/watch?v=w_zaSKZks1A

Okay, seriously, I was thinking that we, as a nation under God, need more information about this particular strand of Corona virus.  I have a little savings and I can donate some money for research if the guy on the purple mountain and all of his cronies would go to Wuhan on a fact finding mission.  I think they should hit every wet market in China so that they get all of the particulars needed to fight this war.  They can get fabulous deals on flights right now; hell, The Donald can take his entire family on Delta for just pennies. I'll kick in some change for them all to have a big, bat bbq - I think we could raise some really great, I mean tremendous, really really important money for that event...it could be so good, really, just fabulous and wonderful and so great, just the best, really.

No, I'm not high.  I'm just trying to amuse myself in this age of  - you guessed it  ....

                                                         https://www.youtube.com/watch?v=ajgeaOt_HTQ


And now, what you've really been waiting for...the update on Jolynn.

         Today is Day Plus 38.  Jan's donated cells have been homesteading in Jolynn's bones for 38 days now and it's been a smooth transition.  The OHSU staff continues to be blown away by her amazing progress and admitted today that she is, indeed, in the high percentile of excellent recovery from the bone marrow transplant.  The medication dosages change periodically and that can be confusing as hell but we are managing.  The appointments sometimes change and that's a tad frustrating but overall, OMG, we have NOTHING to complain about!  She doesn't have a fever, she doesn't have mouth sores or rashes or anything that was predicted to manifest with GVHD.  Occasional nausea and exhaustion but, hey, that's not bad! Her nurse manager wants her to get out of bed - to walk - to get some exercise.  She spends entirely too much time in bed all day.  The weather is sunny - walks need to be part of every day.  That's her prescription.  WALK.  We picked up more meds today - some of which have to be specially mixed with water in a timely manner by the pharmacist - all efforts to help Jolynn be more comfortable with taking pills....whatever it takes to help Jolynn swallow the pills and, eventually, swallow the reality that, yes, she did have cancer but she beat it.  This is the dawning...

Let the sunshine, let the sunshine in, the sunshine in
Let the sunshine, let the sunshine in, the sunshine in
Let the sunshine, let the sunshine in
                            
                P.S.  A special shout out of extreme gratefulness to Trish for cleaning our home while we 
                         went to the cancer center today - what a sweet, wonderful act of kindness!  

The times, they are a changing....

C O R O N A V I R U S

                  Yikes!
                              That's all I can say about it right now.  

But I CAN give you an update on Jolynn:

        Today we had another doctor's visit that sings the praises of how extremely well she's doing!  All of her blood, kidney and liver function levels are absolutely perfect!  No signs of GVHD, no mouth sores, no rashes....other than a little nausea and occasional stomach pain, she is doing remarkably well!  After two bags of magnesium, they asked her to start taking 3 magnesium pills / day.  Of course, taking more pills is upsetting to her but she's trying to be patient with the process.  
I am trying to be patient too. 

Jolynn's daughter Mary did our shopping last night - a total act of kindness and love,  My daughter Hannah asked me to please wipe everything off before putting the food away.  Worry and more worry and through it all, we are trying to stabilize ourselves.  The OHSU staff gave us some excellent information today about taking care of ourselves during this CoVid19 crisis and they also told us that there was a recent OHSU patient in Portland who tested positive.  It's definitely here.

                                            It's not the flu.  
                                                   It's not a f.....g hoax.  
                                                                It's real.  

After we left the cancer center this morning, we drove out to the farm to get the mail.  Jolynn fired up her beloved John Deere tractor and together we moved a few potted plants out of a dark carport and into a sunny area using the bucket of the tractor.  It felt good to get that project done.  It felt good to see Jolynn on the tractor, finally.  Sitting on the porch before we headed back to Aloha, I took this picture.  Perched there, we listened to the birds and talked about our lives, where we've been, where we're going.  

Change.

What changes are on the horizon?  We are all watching as this disaster slowly, painfully unfolds.  To say"Please be careful" would be a gross understatement of how I'm feeling about all of my loved ones.  

Kudos to Bob Dylan.....

https://www.youtube.com/watch?v=90WD_ats6eE

Holed Up

I've had many office windows in my thirty years of running small businesses but this is one of my favorite views.  I have a desk in a guest room on the second floor of our Aloha home and this is where I will be spending the next several weeks furiously trying to catch up on being six months behind with the rental business paperwork.  A Quickbooks sanctuary as the Oregon March sun begs the flowers to bloom.

CoVid 19 is rolling in and I am trying to keep my fear at bay.  Last weekend I fought off a sore throat and head cold - no fever - no.......not coronavirus.  A pancreatic tumor in 1996 took part of my pancreas and all of my precious spleen, the organ that works hard to fight off infections.  So, I'm on my own with defense.  Mostly I do okay but I have to admit, I'm scared. I keep antibiotics on tap in my medicine cabinet, thanks to my perceptive doctors over the years but I didn't need them last weekend.  I have a little trick that often works.  I'll share it.  It's a combination of tinctures that I put into a shot glass with a few drops of water and then quickly follow with a handful of raisins to help with the horrendous taste.  Echinacea, Ginkgo, Horehound and Elderberry - works like a charm.  Sore throat and nasal issues gone!  I visualize the dark drops of liquid jump starting my willowed immune system and then the power of the miserable redhead triumphs over illness.  I don't have stock in those tincture products but I'm here to tell ya, they work for me.  Just sayin'.

Coronavirus - well, that's another story.

Segway into Jolynn's update.  Today is Day Plus 32.  As you may remember, that means that she is 32 days (over a month) after her stem cell transplant, a milestone in the medical world.  Surprising to all, Jolynn has not had any fevers, she has not been readmitted in the hospital, she has not had any rashes or sores and she is able to eat small meals throughout the day (and even through the night sometimes).  She is a tad nauseous sometimes and the staff is working hard to adjust her medicine.  She still struggles with having to swallow pills so the OHSU pharmacy is working to convert yet even more of her pills into liquid forms.  She complains about the taste of food but is really good at eating consistent meals and snacks and she is drinking enough fluids.  They did give her a bag of Magnesium yesterday and they want her to take her Magnesium pills now.   And, she gained a fraction of a pound.  Yay.  I'm hoping that the upcoming sunny weather will entice her to go outside and walk but for now, she spends a great deal of her day resting and eating in her bed.  

Because Mary took her mom to the doctor appointment, I drove out to the farmhouse yesterday and watched the dogs run around after I did my errands. I laid on a bench under a grape vine and centered myself with the sounds and smells of the boonies.  It's hard to know what the future will bring.  I took some pictures of the property, talked with an 80 year old neighbor, and took the long way back to Aloha on the country roads. 

I don't have a song today.  Can't muster up the energy, for so many reasons.  

But, here's a picture of the farmhouse on a bright March afternoon, just days away from the Ides. 

Butterscotch Pudding

It used to taste more delicious than it does now.  I can delete it from my future grocery list.  A moment of weakness tempted me to pull it off the nearly empty shelves at the grocery store a few days ago.  Hordes swarmed the grocery store in my neighborhood, buying up all of the toilet tissue, hand sanitizers, canned goods but pudding was left behind on the shelves.  So.  Hey.  Why not?

Because I know better, that's why.  
I will do better.

Doing better.  That's my daydream for moving forward.  It's a lofty goal.

Jolynn is meeting most of her medical goals.  Her bloodwork is, well, perfect.  All (every single one) of her blood counts, including platelets, are absolutely normal.  She did not need magnesium today; her liver and kidney functions are ideal.  She does need to drink more liquids so they gave her an IV bag of saline solution at this morning's appointment.  The side effects of the myriad of drugs that she is taking causes nausea and exhaustion.  She has to take a new pill in addition to her repertoire of pills and that is upsetting to her because she detests taking pills.  They told her today that her body is still feeling the side effects from the chemotherapy she received on February 6th.  We also learned that Graph Versus Host Disease (GVHD) symptoms will show up after Day Plus 30.  Today is Day Plus 27. She has been encouraged to expand her diet and liquids and to try to be more active, to get out of bed for most of the day. Her son Jed arrives tonight for his weekly, 3 night commitment to help his mom recover.  Grateful for the help, I will be able to focus on other errands and chores with his 24/7 attention to his mother.  She made it through the bone marrow transplant and she is cancer-free - that is all great news.

March used to feel more vibrant than it does now.  I'm getting a slow start to 2020.  The shelves in my left brain are scarce.  I need substance.  Hordes have cleared out the inventory.  

Resorting to music (yes, again), I need my daydream.   I know I can't have the pudding, not even a "Lovin Spoonful" of it.  

Alas, some songs still make this miserable redhead smile and I'm relying on some of my favorites to help me stock my shelves.  

                                  https://www.youtube.com/watch?v=fwH4wPz-URM



Here's our butterscotch Rosie.

Blossoming

Splatters of hot grease on my twenty year old face added to my discomfort of working as a cook at Perkins restaurant in my small college town.  It was an odd job for someone who vehemently dislikes cooking but it was my summer job after my junior year ended and I found myself broke.  College loans weren't paying for summer survival so I was lucky to have a job and be able to pay my rent and eat in 1976. A small town presented the opportunity to walk to and from work so it wasn't so bad, especially since two of my dearest friends were waitresses at the same popular townie hangout.  Flipping pancakes, tossing fries in the basket, patting salisbury steak patties were skills I never wanted to perfect and having to work my (then skinny) butt off in the stifling hot kitchen only made me study harder in my English classes.  Like a sultry cloud, the memory of that summer hovers in my old brain. One particular facet of that summer still brings me joy that verges on laugh out loud and then instantly, softly weeping.

And it's a small thing, a breezy little glimpse of recollection.  We three often had the three to eleven shift at Perkins which means we missed out on the best part of the summer days because we had to sling hash.  So, we started taking a beach towel and bathing suit to work with us during that muggy Pennsylvania summer. At shift end, we swiftly jammed our time cards into that worn punch clock machine, grabbed our duffle bags and gleefully raced each other to the dock behind the post office.  It wasn't long before we realized we didn't need our suits for those midnight plunges.  Jumping off of that old dock naked into the cool river water on those humid summer nights devilishly delighted us!  We were blooming into ourselves, cherishing our love and friendships.

Those were the days, my friend.  

It's excruciatingly difficult for me to bring up most of those old memories.....  I am not restored back to my pre-2017 self yet.  Probably never.  

But I am still trying to find joy in the small, minute minutes of now.

Today, after I disinfected our home and completed my chores while Eli took Jolynn to her Treatment Center appointment, I walked around our pretty yard with a pair of scissors.  I clipped a few Daffodils to put in the upstairs bedroom where I sleep.  Jolynn can't be around fresh flowers until Day Plus 100.  Today is Day Plus 24.  Her nurse gave her IV fluids this morning and prescribed a new anti nausea pill, Compazine.  The hope is that this medication will help her want to digest more food and fluids so she can start to gain (not lose) weight.  On all other fronts, she is doing remarkably well.  Exhaustion abruptly takes over but she is resting regularly and thoroughly enjoying the visits from her children and grandchildren in person and on the screen.

Meanwhile, my dear friends and family encourage me to take care of myself.  That's why I took the scissors into our yard this morning.

It's the simple things in life, 
     right Kath?



                                           (I attach links for songs if you'd care to click, or not, up to you)

                                                https://www.youtube.com/watch?v=y3KEhWTnWvE

Now I Long

Yesterday (all my troubles seemed so far away...) was a turning point for Jolynn.  Her meals were more substantial and included protein.  Her daughter visited so she had two attentive kids to cherish while resting on her bed.  Still no presence of the dreaded mouth sores they warned us about and no fever, either.  "Food tastes better today" is the comment she had after completing her egg and spinach breakfast this morning.  If it weren't for the monumental worry about germs, including the world health avalanche, Coronavirus, we'd be more inclined to socialize a bit more.  But, like millions of others, we are terrified and basically quarantined in our home.  Except for Mondays and Thursdays at the Cancer Treatment Center, and car repair appointments, and rental business errands and yard work supervision......so, not really quarantined at home.  
Yet.

I have to curtail my subject matter and reign in my outrage.  I could write about this virus and politics and how we treat people in this country and in the world and racism and sexism and homophobia and all of the other "isms" and my complete and utter disgust for some high profile individuals...but I won't.  

Deep Breath ~~~~~~

I am paying attention and I am angry.  Yet, I'm trying to find a path to some sort of peace to help me through this frightful storm.  All of these horrific challenges that humans have to endure on a day to day basis - now it looks like they are here to stay. 

A few hours with Trish yesterday was fulfilling.  I just needed a place to hide away.  We share a daughter, our beloved HC and when HC's moms can get together to brag about their child, it's always rewarding and creates essential endorphins.  Family, a sacred oasis in the blizzard of constant torrential bad news and viral infectious mindsets.  

Clinging to family at times of crisis and hiding from the shadow hanging over us is an age old coping mechanism.  I feel so very fortunate for family AND friends.  I know that Jolynn feels the same way.

Always a super fan of the Beatles, I have my favorite song.  I'm assuming that by now it's obvious.   What might not be obvious is that this same song is apparently Vladimir Putin's favorite song too.  

Humanity....

I could say that he's not half the man.............. but I won't.   I'll just leave it at that.  I don't want to say something wrong. 

Longing 
for world wide decency,  free from the disease of bias.


                                                                    Good    -    Music

                                          https://www.youtube.com/watch?v=NrgmdOz227I