Circus Peanuts

 When I was young there were certain candies my mother favored to my astonishment. Things like Canada Mints & candy corn. The grossest was circus peanuts.

Later I used to say that she picked those treats because she knew she wouldn't have to share.

My Mum has been gone 200 days.

I was online shopping for some household supplies like facecloths & a dish drying mat. As usual, suggestions were at the bottom of the screen; shampoo...dish soap.....and

Well, hello Mum! I think about you too. Say hi to Frankie for me.

My Mum

 My Mum passed away December 8th. As much as it hurt, it meant peace for her after a long battle with Parkinson. She went to sleep beside my father, the only man she ever loved and slipped away. They had celebrated their 60th wedding anniversary the previous June.

I am comforted by my firm belief that she arrived in Heaven to be greeted by my delighted son Frank & her parents & many more loved ones. Now she knows only happiness.

Yesterday would have been her 83rd birthday. I spent the day trying my hardest not to think about.

But here it is waiting for me today.

Happy Birthday Mum!  I miss you.

Why Am I Awake?

It's nearly 0430. Later this morning I will I meet my new oncologist. 

Dr. Miller is 74. He has had to step back with Covid & all. So they are finally dividing us up. 

This is not a place I ever expected to be. Twelve years ago, I had a five year prognosis.

My current treatment plan is working out well.  I don't want things to change.

I guess what I'm trying to say is, I hope she likes me!

12 Years

Twelve years ago I was diagnosed with Multiple Myeloma.  Nothing was particularly wrong. Numbers from my yearly physical were pointing toward anemia & a neoplasm. So there were tests & biopsies & MRIs. Within a few weeks they had it all nailed down.  Stage IIIA MM subtype IgA lambda. IgA was known to be refractory, which means difficult to treat, and known to have poor outcomes.

Five years was the prognosis.

And refractory is just what I am. Front-line treatments did not produce a sustained response.

My stem cell transplant produced a mere 22 month remission.

Pomalyst caused other problems, so I had to come off.

I'm slow, a little dull, prone to infection & weak.

But thanks to my fabulous hematological oncologist at Tufts/NEMC, Dr Kenneth Miller & everyone on South 8......

Here I am, seven years past my "expiration date".  Grateful every day.

It Seems I Only Come Here To Beef

So I'll post something pleasant.

Tomorrow evening, June 24th, the Massachusetts Historical Society is hosting an online event.

Mary Beth Norton will give us a preview of her new book, a narrative history of the “long       
year” of 1774, or the months from December 1773 to April 1775, which have tended to be overlooked by historians who focus instead on the war for independence. But John Adams, who lived through that era, declared that the true revolution took place in the minds of the people before a shot was fired at Lexington. The year 1774, Norton argues, was when that revolution occurred.

1774: The Long Year of Revolution

Once Again, July 28th Is The Shittiest Day Of The Year

Without a doubt.

And once again, I haven't planned it well.  That's because planning requires thinking about it & I don't want to.

I want to be somewhere far away, where no one knows me. Where I can get room service so I don't have to see or talk to anyone.

Instead I am in Staunton wrapping up my part of the move. I'm trying to be brutal & purge some stuff.  But today isn't the day for that.

Yesterday I was sweeping my room and moved Frank's ashes to the head of my bed.  Last night when I got in bed, they were still there.  I left them.  Frank & I shared a bed more times than I can count.

Frank is never gone from me.

50/50 Questions

I get these wrong 95% of the time.

Made an eye exam appointment down here in Tom's neck of the woods because I lost my glasses.  I get there on time -yea me! - but they don't take Medicare or Blue Cross.  Huh?

Fine. I pick up 6 things at Walmart.  But I miss the bus by a few minutes & there are no cars available on Uber.

Guess I'll walk.  I forgot my sunglasses & the road back to Tom's place is like the surface of the sun.

Then a rainstorm blows in.  The temperature drops & it feels like Heaven.  But I am wearing sandals which are slippery when wet, so I have to walk slow & careful.

I guess the important part is we have toilet paper.

Whoosh! An Enormous Sigh of Relief!

In more cases than one cares to contemplate, a Multiple Myeloma patient is rolling along when kidney damage requires dialysis & shortly (less than a year) after that begins, the patient is dead.

I was originally given five years. Not by Dr. Miller.  He would never answer that question.  No doctor should unless it is truly necessary.  The science is changing too fast.

So instead, I am a month away from the 6th anniversary of my expiration date.

And I've been "rolling along"..... Until last week when I quickly dropped off a cliff.  By the time I was admitted on Saturday the 25th I was in complete renal failure.  The word one doctor used was "catastrophic".  On Memorial Day Weekend.  Which meant no one was on their office.

And I was in Virginia.

There was not enough urine to scrape up to test.  I was at zero output.  I was trying unsuccessfully to answer questions.  Fortunately Tufts emails you lab results etc.  After 8 tries at my phone password I showed  them completely opposite labs from May 16th.  How could I crash so fast, so completely?  What had I changed, taken, done? The nurse who inserted the cath was insistent that she had placed it correctly and she had.  There were ultrasounds & scans & blood draws & bags-o-fluid & two days of dialysis which would have scared the piss outta me - if I had any.  Through miscommunication I got myself labeled at risk for falls.  Not that I was ready for a high wire - I should sometimes just answer the question & not be a smartass. My Marine specifically said "Don't be an asshole." I relayed a short back and forth to which he replied "Now that is being an asshole."  Shrug.

I looked and felt like the StayPuft marshmallow man. But finally after 3 days I gave up a few ccs of "output" for testing.

My dear, dear friend Mary Ripley, the anti-Road Warrior hopped in a car & drove from Annapolis to Staunton to my utter astonishment.  I was moved to tears. Relieved for many reasons, not the least of which was support for my son Tom.  Tom, while he was very afraid, came through like a trooper and showed why he was an excellent pick as caregiver.

Oh and I must roll it back to the trip to the hospital to give a shout out to my ex's wife Michelle.  She drove us & we got to ride her coattails as a nurse who had previously worked at Augusta Medical & called ahead.  Best part? They asked her relationship to me, I froze.  How to.. and she just jumps in "This is my husband's ex-wife." I luckily had enough moisture left to allow a big snorting laugh. Thank you Michelle for the ride....and the ride.

So now we are at Wednesday the 29th and Mary is headed back to Annapolis & we are just saying our goodbyes when there is a knock on the door.  A young man pushing an empty wheelchair to take me to my kidney scan.  Surprise! I look at Mary assuming I have forgotten something but she shakes her head.  We are supposed to be sharing her brain.  So she leaves and I settle in for a ride.  When we arrive I ask the tech "Are you expecting me?"  The answer is affirmative so I get up & onto the scan bed.

Back to the room and not 15 minutes later a doctor I don't recognize says he saw 3 kidney stones and Thursday morning he will "flick" (accompanying hand gesture) them out.  I am gobsmacked.  I have had one kidney stone in my life. It was a few years ago here in Virginia.  My medical frame of reference for a kidney stone is Kramer in Seinfeld and that is not what I am experiencing. But ok. I am NPO after midnight in anticipation of early morning procedure.

Now I know I should not be discussing too specifically my prescriptions. But I am on a pain management system to deal with the irreversible Multiple Myeloma damage.  As well as the unlikely-to-change nerve damage caused by chemo.  So there can be no pills with no water. And there should be food since otherwise they will come right back up.  But by 8am I gratefully risk choking & upchucking.  What can I do? I've already bitten my nails to the quick. I am contemplating going rogue. I would be stupid to not have at least one hidden 💊. Lol.

Every knock on the door I ask "Are you here to take me to surgery?". They address my pain but now I have a headache from hunger.  After not eating or drinking properly for over a week, my stomach has shrunk and I  can't afford to pass up a nibble. Not that I have an appetite per se, I have been playing with every dish placed in front of me.

Finally at 3pm a nurse comes in to get me.  I shove everything into my bag & throw it in their closet, ready to roll.  But like my Dad at the beginning of every car trip, Liliana my nurse tell me to go to the bathroom (after overwhelming me with fluids, I was outputting).  So I went to the bathroom & came out to almost jump on the bed.

Down to surgery.  Short wait.  Into the operating room.  I am asked if I would like a warmed blanket.  ?  I say "Who. Are. You. Talking. To?"  Warmed blanket.  Anyway, anesthesiologist describes what will happen and just like he said - IV felt warm and BANG, I was gone.

Now a quick word.  The pain management I shouldn't talk about - I don't get anything except pain relief.  They are just jumped up aspirin that make me nervous when I have to pick them up from the pharmacy.  But the word I'm talking about is propofol.  Drugs are bad.  Don't do them unless the doctor, a legit doctor, prescribes them.  But *IF* you are being wheeled into the operating room & they say "We're going to give you some propofol." Say "Yes, please".  The post-op nurse is talking to me from far away & asks me to open my eyes.  I am astonished to be back at the hospital. The nurse asks what I see & I say "I'm back in my bed." and she starts laughing.  I have never experienced anything like that in my life.  I can't explain it, but I have never felt so happy and comforted.  And the dream didn't exactly end, but the real world bled in from the edges and slowly overwhelmed the dream.

Anyway, it's dangerous and that's only like my second time "under".  I had my tonsils out at 5.  I don't remember much.  And my children were born under a local.  The transplant went through a line that was placed the previous week.  So I'm not advocating it.  I'm just saying I have a better understanding of Michael Jackson now.

So Thursday night I am up and drinking and "outputting" like mad.  Everyone is happy and it's a great success.  Once they left the room I cried for the rest of the night.  That shaky crying when you see the car wreck or plane crash that you just walked away from.  The whole "now that the emergency is over.....HOLY SHIT!  I almost died" crying.

I told everyone I interacted with, doctors, nurses that I might not have let on how scared I was, but I knew the full implications of this episode.  I told them that I knew I was standing in the middle of the road with a tractor trailer bearing down on me and they reached out and snatched me outta the way.  And that I was grateful beyond my ability to express it.  More than tongue could tell.

My dreams that night and to a lesser and lesser degree on successive nights were super vivid and complex and in Cinemascope.  I think that was the propofol.  Friday afternoon I woke up from a nap and I was all clammy.  I had this deep sense of unease and hopped out of the bed sans robe & fall protocol no-skid socks.  I was clutching the gown closed in the back with one hand and whipped the door open with the other, ready for ..... I don't know what.  But the hallway was empty.  I could hear people laughing and talking in other rooms.  Clearly everyone was ok.  But that was super weird too.  And LOL what was I gonna do if everyone wasn't ok?  One hand, no socks, no bat.

And I apologized to the two doctors I was rude to.  You know from reading this blog that I am an awful snob.  Boston is the Hub of the Universe, the center of the known world.  I have often said that I had confidence that I would be ok because I was lucky enough to be diagnosed in Boston.  So my attitude at first was "stabilize me & I will Uber 600 miles back to Tufts/NEMC".  Fortunately they missed most of it because of the dry mouth & the speed with which I speak.  But I still had to offer apologies, because I was awful.

But credit where credit is due.  This was hard to figure out, but they did and no dialysis for me.  I am back to where I was before.  There is still a question of what caused this cluster of kidney stones right here, right now.  And so they are still working on it.  But in the meantime, there were some no harm/no foul suggestions that are easy enough to work into my life.

Do You Read Lee Child's "Jack Reacher" Series?

I do.

I started late.  I didn't read him before the movie adaptation.  It seemed that there was an endless supply of books.  I was wrong.  Now like other fans I am waiting for the next release on October 29, 2019.

Sometimes I really like him - I mean Jack.  Sometimes, not so much.  There were a few books where I felt his "line" was blurring.  You know what I mean - "I'd do this; but I'd never do that!" I always felt
Jack's line was pretty near mine.  But he came back around.  And even when I was worried, I was still a fan.

Of the 23 novels currently published, the second most recent "The Midnight Line" is far and away my favorite.  When I finished it, I felt something very close to what I felt when I finished Denis Lehane's "Mystic River".  I felt connected.  Really connected.

With Mystic River I felt Lehane had seen something in me and was writing to me.  While I have great respect for Clint Eastwood's movie making skills, I felt nothing like that with the movie.  It was impossible.  Eastwood isn't from Boston.  You have to be from Boston to get that book.  Not his fault.

With Midnight Line I fell in love with Jack Reacher.  By the time I closed that book I realized that if Jack were real and I met him, I'd do anything for him.  I can't recall feeling that way about any book character.  And I am a big reader.  Not even when I was young and easily infatuated.  Even though Jack is former Army......not Navy.  LOL!

Sunday, April 7, 2019

So we are a week out from The Tough Ruck.  The actual website is down or has problems, but the Facebook page is fine.  So, go there, like it, and if you can, donate, attend, yada yada.

From their FB page:

  "Tough Ruck, a 26.2 mile Ruck March, is a project of the Military Friends Foundation. We are proud partners with the Boston Athletic Association, National Park Service and The Trustees.

On April 14, 2019 be part of something GREATER. Join the elite group of 1000 Tough Ruckers who will be the first to earn the official 2019 Boston Marathon Medal!

***#ToughRuck2019 will take place on Sunday, April 14, 2019. Registration rates and fundraising commitment will be the same as 2018.***

We are a group of Military, First Responders, and civilians whose sole purpose is to Ruck in honor and in memory of our Fallen Service Members, Police, Firefighters and EMTs, while raising funds to support Military families in times of need. We will walk/ shuffle/ruck a 26.2 mile course on Patriots Day weekend on the battle roads of the Revolutionary War, in Concord. We will carry the names of our Fallen comrades on our rucks. Tough Ruck is a proudly hosted partnership with the Boston Athletic Association/Boston Marathon. #ToughRuck2019 #MarathonWithAMission


~~~~~~~~~~~~~~~~~
So, I'm still processing the passing of my friend Carrie.  I couldn't go to the funeral.  Financially, flying to Kansas City from the East Coast was prohibitive and I've had a cold for six weeks.  I can't talk without coughing/gagging and peeing my pants.

But if i couldn't be there, at least I'm in a Carrie place.  She attended Mary Baldwin College here in Staunton, VA and loved Wright's Dairy Rite down the street.  So, I have that.

My Friend Carrie

The internet has given me sooooo much.  But once in a while, it gives you a gut punch.

When I started blogging, technically I was a #Milblogger.  I had never served and I wasn't a spouse.  I fell into the category of #supporter.  And when #MilblogConferences started happening, I went for the parties.

And I met a ton of cool people.  Some of them are and will continue to be my life long friends.

One of the very best was Carrie Costantini.  Carrie was a "doer".  I wrote stuff, I followed other people's lead when i could.  Carrie got stuff done.  Not in a big showy way.  In exactly the right way.

One of the things Carrie and I talked about was Staunton, Virginia.  That's where my eldest son lives and Carrie went to Mary Baldwin College.  One of her first questions was had I gone to "Wright's Dairy Rite".  It's a burger joint, like an old fashioned car hop/drive-in place.   A working juke box. They opened it in 1952 and around these parts, it's local legend.

I'm about 50 or so hours past my latest Dara infusion.  I haven't written about it (or much of anything), but it's a biologic and your body tries to fight it.  My body mimics a really bad head cold.  So my ears, nose, and chest are stuffed up.

When the other half of #TeamM called to tell me that Carrie had passed away today, I tried to pretend my stuffed head got it wrong..

But I didn't.

So I got up and took a shower and went and got a burger and onion rings.  Here's to you Carrie.

July 28th

The shittiest day of the year.

It's A Minute After Midnight

May 28, 2018.

Twenty-two months since Frank died.

Sometimes I don't know how I've lived this long.

I have no regrets about my relationship with Frankie.  I loved him...love him with all my heart.  But I grieve that I will never get the chance again in this life to show him.  Or tell him.  I can only pray he sees me take care of his son and feels my love living on that way.

I try to cope by not actually feeling that loss.  I focus on the positive, my happy memories.  I tell myself it doesn't help little Frankie to see my grief.  My job now is to keep his father and his fathers love for him as a bright happy constant presence.

But sometimes when I am alone, I let myself feel it.  Really feel it

Sometimes though, someone else forces me to feel it.  They force me with their selfish attitude toward their children.  They force me when they casually pass up on loving their children in ways that I can never have again.  I want to scream and rage at them.  You never know what tomorrow will bring you or take away from you.  You could be me.  You could be sitting in a chair with a doctor saying they're sorry they did their best.  You could be sitting at home when you see a car pull up and a police officer or a military chaplain gets out to knock on your door. You could be the only one who wakes up from a car accident. You could realize that you lost your chances on petty bullshit.

Today Is Many Things

....to many people.

For me it is the 50th anniversary of Papa Kelley's death.  He was my mother's father.  I had only turned 7 a few days earlier, and worse it was my Uncle Kevin's birthday.

Despite losing him so young, my grandmother never dated anyone else, much less remarried. I have always been in awe of a love so great that it sustains you for the next thirty years.

I have many happy memories of my grandfather.  And stories from family.  But also stories from people outside our family who knew and admired him.  He was born Owen Francis, but went by Frank and he was a person who drew others to him.  I was always struck by the regard people held him in long after he passed.

Overall, '68 was a sucky year in my opinion.

Team M - Hanging In Annapolis

There are lots of people who are very good to me & invite me to visit.  One of my absolute favorite destinations is Mary Ripley's house in Annapolis.  Back when I was much more active in blogging I met Mary at a Milblog Conference and we have been fast friends ever since.  Mary has been part of some of my favorite adventures.  She has actually facilitated some of them, enabling me to do some things that I would never have been able to do otherwise.  Team M - Mary & Maggie.

I try to be back in Virginia with Tommy during my 14 days of Pomalyst.  No one wants to watch someone hanging like a blob on the couch.  But this month Mary has persuaded me to give Tom a break and hang here.  It's a kindness I'll never be in a position to repay.  And more than just being a place to be, it's a fun visit. 

Mary and I could never run out of things to talk about.  If we did, her granddaughter Sailor visits and keeps us entertained.  Sailor is the most outgoing, sparkly little six year old.  I sit in this cushy armchair and there is room for Sailor to comfortably pop in beside me.  Knowing her mother, I suspect Sailor will always fit in this spot.  Not that Sailor sits a lot.  She bounds into the middle of the room to dance when the right song comes on.  There are many songs that are good for dancing or showing me "Cheer" moves. 

And there's no guilt here!  When in Virginia I always want to get a project done so I can feel like I accomplished "something".  Well, there are no projects for me here!  Just chocolate & binge watching "Masterpiece Theater" dramas and Graul's chicken salad.

Thanks you, Mary!

Today Would Have Been Frankie's 30th Birthday

I was with Britt, the grandkids and Tommy came up too.

Last year I hosted a party and had plans to do so this year as well.  But when crunch time came I didn't have my ducks in a row.

I'll do better next year.

But Britt got balloons for us to let go of as we called out "Happy Birthday"!  Little Frankie loved it!

Lots of people have sent me very nice messages and I am so grateful.

January & Full Moons

I've always paid attention to the moon & celestial events.  I can remember sharing this with Frank & Tom & their friends. 

Now I want to get little Frankie in on this.  I'm still in Virginia, so I have to wait for the second full moon at the end of the month.  While the stargazing was fun, I remember the boys being more concerned about snacks and the weather.  So I will have to put together a list for how I'm keeping him warm and the best snacks for a cold night on the beach.  I'm hoping the bitter cold relents for a few days around the 30th/31st.

Grommet has this thing that I like the idea of...not the price of, lol.  Oh well, I have a month to figure it out.

Called My Dad Today

I waited until the game ended, but I forgot about the 5th Quarter.  Not that my father is any great talker on the phone.  He's talkative enough in person, actually very social, someone you want to sit with at a party.  Always a joke or story, doesn't let anyone sit isolated.  But the phone?  Forget it.  His responses usually amount to "Yeah.  Yeah.  Yeah-yeah.  Is that it?  Here's your mother."

I would have called anyway, it's New Year's Eve.  My opening remark was "Can I call back at midnight?" He was paying so little attention he said "Yeah.  What?  No!" and then started laughing.  "Mummy and I haven't seen the ball drop in years!"   It always slays me when he refers to her as "Mummy" like when I was four or five.  My mother was sleeping so I'll try again tomorrow.

But really I called to hear his voice.

Today on Twitter, @IowaHawk, a really witty smart guy posted that he lost his father.

He help pull me along my entire life. Farewell Hawkdad, the best farmer and finest human being I have ever known. pic.twitter.com/Oq62EEQR6R

— David Burge (@iowahawkblog) December 31, 2017

What I Will Do For January

So generally the Kindle is for my mental snack food, post-apocalyptic fiction.  Zombies, EMPs, viruses.  I have Kindle Unlimited and I subscribe to Book Bub.  For serious reading I prefer actual paper & ink books.  I buy new & used and have library cards in Boston, the South Shore and Staunton.

But somehow I got a copy of "Long Summer Day" by R. F. Delderfield downloaded.  As I was reading it there was something that seemed familiar.  So I looked up the author.  His other books include "God Is An Englishman" and "Diana".  These were books my mother had read when I was young.  I would guess ten or eleven. 

Now I am enjoying the memory of trying to keep up with her books.  It was hopeless.  My mother was a voracious reader and very, very smart.

It feels good.  After I finish this book and the series it's part of I'll move on to other Delderfield books and maybe some Taylor Caldwell.  This book is set in Edwardian England with the main character being a soldier who was hurt in the Boer War so I'll also have to get hold of some non-fiction history of the Boer War.  I know Great Britain, Africa, Kruger, the Zulus, "Men of Harlech", Natal, Roarke's Drift, Michael Caine, Burt Lancaster and "Breaker Morant".

It's supposed to be a cold winter this year and this will be considerably cheaper than a trip to the tropics.

So, Yeah, I Think I'm So Smart - Part 2,457

So, like I said, there are lots of appointments.  Regular oncology stuff, the stuff with the dentist and catching up on regular "keep yourself healthy" check-ups.

There's a calendar app on the Android and my paper & ink notebook.  But somehow there is still lots of opportunity for me to fail!

During the most recent dentist appointment, we scheduled a follow-up on October 31st.  Then there was something on November 2nd.  I got a call asking if I could make November 7th.  Apparently I missed that this was a rescheduling of November 2nd.  Mind you, these are text messages.  I can read these....and read them again at my leisure.

Then I had to cancel October 31st.  Woke up sick, sore throat, cough, etc.  That was rescheduled for November 6th.

So the calendar reminds me to get up and go to the dentist.  Brush, floss, rinse.....and skip breakfast because I don't want to mess up the beautiful job I've done.

Everyday at 1pm there is a scrum in the lobby of Tufts Dental School because everyone is returning from lunch and afternoon appointments begin at 1pm.  So I sent a text letting my dentist know I was in the building, but because of the elevator situation, I might be a minute or two late.  She texts back "We have no appointment today?"

Lol! Of course not!

So I called my parents and told them to expect a visitor!