Back to Caring Bridge

 Hello

Maintaining this blog right now is too emotionally exhausting for me.

I'm posting updates on the app I used back in 2020 - Caring Bridge.

If you're interested, you can try the link below or go to Caring Bridge and put in "Jolynn Moore's Recovery"

https://www.caringbridge.org/site/7443bb68-cc52-3994-ae84-b1268040bd86?utm_source=share&utm_medium=web&utm_content=copylink_leftmenu_php

Adios for now.

Bolt Out Of The Blue

 Almost two full years, almost to the day, have passed since I wrote on this blog.  

I mentioned Jolynn's cancer-free diagnosis in that last post and then I stopped writing...typical Miserable Redhead writing pattern.  Even at this moment, my writer's block threatens to paralyze my thoughts but what I have to say right now is too important to sedate my words.

Jolynn's cancer has come back, morphing from MDS into AML Leukemia.  This diagnosis has been unfolding while we spent the last few weeks picking ourselves up off the ground from the impact from this dreadful meteor, out of the blue.

I am struggling to find the words this evening so I will keep this short for now.  I will use this forum to post updates on her health. I will relay your comments to her that you leave on this blog.  Your encouraging texts to her phone are always welcome; but know that she may not be up to the task of responding to you.  Please don't take it personally.  She will be fighting for her life.

The Plan as we know it:  Jolynn will be admitted into the hospital tomorrow - 8/31/24.  Her doctor will begin daily chemo treatments and this will likely continue over the next four weeks......yes, four weeks in the hospital. 

If you want to send a card, please mail it to the address below and I'll deliver it to her, to bring your support and optimism to her hospital room.

PO Box 1299

McMinnville, OR 97128

We will get through this jawdropping debacle, one long day at a time.  She persevered in 2020 and she will do it again!  

Thank you for your love and support. 💙💙

      Picture taken in Carmel, CA - November, 2023 with Harley and Gia

Don't Forget to Write

 It's been a minute since Jolynn was diagnosed with cancer in October, 2019 and the CoVid pandemic spewed like lava over the world in January, 2020.  As Labor Day, 2022 slides into home base, ending an inning of summer, infectious germs are still lingering like a hot, muggy day in the red south. Stifling.  Oppressive.  Maddening.  A few of us are still wearing masks in public.  Some of us are taking precautions and taking words of wisdom seriously.  Most people have long since dropped the masks - littering their carelessness across the country.   

There will always be people who gamble with their lives and disregard other lives. That is, after all, what this great country is built on - greed and disrespect in the name of the almighty constitution and bill of rights, keepsakes that are getting pissed on daily.  

Other than that, life is good. ha  Let me reiterate my sarcasm......life is good as long as I don't read the news or think or remember or run out of Ibuprofen.  

Jolynn's silver lining is a cancer-free diagnosis.  Like most people I know, she also has a few health issues.   Most of her issues have taken root in the chronic GVHD realm but she is fortunate to have excellent health care to lean on as she navigates new ground and new healing.

Rosie, our Golden Doodle, is now limping into her 15th year of life and Bear is skipping behind her as he turns into a 13 year old Poodle.  Life with old dogs and old legs and osteoarthritis and GVHD.  

But hey. Key word:  life.  Clutching onto life with every miserable redheaded fiber of my body.  

Dipping my toes in the chilly September morning nuances of writing this blog. 

Bye bye so long.

            Well, maybe I'll see you in September.  

The Happenings:

https://www.youtube.com/watch?v=iu-7DXBiVsA

Time Is On My Side, Yes It Is

 It's been a full year since Jolynn's bone marrow transplant.  She has survived, she has thrived!  There have been milestones and there have been a couple minor setbacks and yet she plunges forward, diving into the future with zeal.  It's mind boggling to think that her transplant happened just minutes before the pandemic crashed into our lives like a gigantic tsunami wave....and yet, that is what happened.  While treading in the flood of Covid19, we hung onto buoys in the pursuit of also surviving her MDS cancer diagnosis in October, 2019.  So much has happened and yet, everything feels like it's been frozen in time.  Dichotomy.

Frankly, I expect more of myself - I am disappointed in my lack of desire to write creatively about what it's been like for the past year.  But, that is what I have - numbness.  It won't always be like this - give it time.  I will return.  The wave is starting to recede just a tad.  My thoughts are consumed with the sadnesses and tragedies of this pandemic and misted with my longing to hold my daughter's hand again, my buoy.  

In the meantime, I am dutifully and happily reporting that Jolynn is getting better every single day!

And she wishes to extend her sincere gratefulness and love to everyone for supporting and loving her through this tumultuous swell of events.  She is feeling privileged, grateful and loved.  So, thank you!

 

The Rolling Stones

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

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