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!

So, Yeah, I Think I'm So Smart.....

I was diagnosed with Multiple Myeloma a little over nine years ago.  My prognosis was not awesome.  My MM sub-type was IgA, which at the time was known to be less responsive to the drug therapies for MM overall.  Most MM cases were IgG, only 20% or so were IgA.  The IgG patients got better and longer lasting results from chemo and transplants.  At first, I didn't really consider what that could mean.  I was much younger than the average patient.  I had no co-morbidities.  I had good health insurance.  I was in Boston, the center of the known universe!  So, I would take some pills, have a transplant and be on my way.

But of course, that's not what happened.  I am refractory.  That means it's harder to push me into remission and I don't stay as long.  There is no cure for anyone with MM.  Sure people might get long remissions, but no one is cured.  Eventually, if you don't die of something else along the way, it always comes back.  I had one remission after my 2011 stem cell transplant that lasted 21 months or so.  And I may be in one right now.  But the only way to confirm it is a long drawn out test and I have other things rolling.  This test is way down on my "To-Do" list.  Mostly because it's academic.  If I am in remission, Dr. Miller isn't going to let me stop chemo.  I'm already on the lowest possible dose of Pomalyst and it's not good to jump on and off.  And if I'm not in remission, this dose keeps my numbers in control.  So, I want to know, but I don't *need* to know.

So, why am I talking about all this stuff now?  Well, pretty much every decision I have made in the last nine years and three months has been based on this diagnosis, this treatment, doctor's appointments, etc.  And I am a reactionary person.  Some people see their future a few steps ahead.  I never really did.  Consequently, I am always reacting to stuff instead of getting ahead of *it*.  Cause I never see *it* coming.  As the logic goes elsewhere, I am always fighting the last war.

One of those decisions was about what I would spend on myself.  What was worth it, so to speak.  I was always really big on the dentist.  My parents raised me to think it was important.  I had frequent dental care, braces, retainers, etc.  As an adult I remember spending more than a thousand dollars for a root canal, crown and a few fillings in less than three months.  But you want to keep your teeth forever!  My Dad is 83 and has all his own teeth.  I wanted to be like that.  And preparation for the transplant meant a few dental visits.  Not the least of which was a visit where they tested my ability to make saliva, lol.  Chewing wax and drooling in a cup.  I was diagnosed as having "dry mouth" which makes you more susceptible to cavities.

Anyway, one of the bad habits I acquired after diagnosis was clenching my jaw and grinding my teeth in my sleep.  Then one broke.  Then another.  I didn't have dental coverage and I remembered how much I had spent on that root canal and crown.  So I put off doing anything.  There was always something or someone else to spend that money on.  How ridiculous would it be for someone with such a poor prognosis to pour good money into her teeth?  So I just rolled along.

Of course now I know that Dr. Miller and his team are so good, and God was going to let me stick around to meet my grandson.  So now I am way past the five year mark.

And because I was so smart not pouring that money into my mouth, I now have a mess on my hands!  If I had gone to a dentist when the first one broke, I would have learned what I found out a few months ago - I can't have root canals.  One of the elements of my treatment plan is a two hour (give or take) infusion of pamidronate every other month.  One of the risks of treating with pamidronate is osteonecrosis of the jaw.  That's where the bone dies and the treatment for that is removal of the bone.

They. Cut. Out. The. Diseased. Part. Of. The. Jaw. Like amputating a leg before the gangrene spreads.  Like William Holden had to in "The Horse Soldiers" while John Wayne lost his mind.

This risk increases if you have; cancer - check; treat with chemo - check; treat with steroids - check; and require removal of a tooth, you know....like in a root canal.

So, I learned all that right after my diagnosis when I was in "Research mode" studying everything about Multiple Myeloma.  And I dismissed it from my "here-in-the-moment" front part if my brain.  I tucked it away in a little box in my mind and put it in storage so to speak.

The only reason I finally went to the dentist was the thing that always gets me off my ass - pain.  One broken tooth became infected and I hustled on in to Tufts Dental School around the corner from all my other Tufts/NEMC peeps.  If something causes pain with all the other stuff I am popping, you better believe I am "on the run with a burger on a bun" as the saying goes.

Part of the reason so many decisions are driven by my diagnosis is because my diagnosis impacts so many parts of my life.  When I tell people I have Multiple Myeloma, they generally have one of two reactions - 1) "What's that?" or 2) "Oh." followed by looking at the floor.  But sometimes it's even better and "Oh" is followed by a hasty retreat.  That's what I got when I got my butt into the first chair on this dental journey I am on.  I sit down, fold up my glasses and say "By the way, I have Multiple Myeloma.  It's an auto-immune blood cancer.".  The dental student (Tuft's Dental School, so students, but that's who treated me before the transplant and it's all heavily supervised) says "Oh." and gets up and leaves.  She comes back with the supervising dentist who is clearly trying to calm the student.  The supervising dentist repeats my diagnosis back to me and asks "What about bisphosphonates?"  So I'm like "Yeah, at least every other month since December 31, 2008."  I remember that clearly because my first bisphosphonate was Zometa and I had a bad reaction and it was New Year's Eve.

And typing that just now makes me laugh and cry because it was Frankie who found me and helped me and made me laugh about it.

So, anyway, they leave and talk to people in the hall.  I could hear some of it.  Basically they decided they could do nothing for me.  I was already on anti-biotics from the oncologist and the infection was nearly gone.  The got me an appointment to have it pulled with "Oral Surgery" the next day.

I went back the next day and met the oral surgeon and basically replayed the previous day.  Once they found out about the Multiple Myeloma and the pamidronate they tell me that they can't pull my tooth.  Everyone is going to have to conference.  Who is my oncologist?  What kind of bisphosphonate?  Who is my primary?  Where?  How often?  And then they say the word that opens up a little box of information in my oh so smart brain....way down in the back.....and I freak the fuck out!  Osteonecrosis.  I know exactly what that is.  And how it's treated and I have seen pictures and they are exploding like fireworks in my brain.  Mind you I am not showing this or saying anything except - "Ok."  "Ok."  They are telling me that I will need to see endodontics.  "Ok."  They are going to call someone right now.  "Ok."  Meanwhile I am putting up the arm on the chair and getting my bag and my glasses because I have to get the hell out of there.

Eventually I calmed down.  It took days, lol.  But the one thing I am smart about is who my friends are - The other half of Team M and My Marine kept me from jumping off a cliff.  It's all being handled.  It's all going to be great and I am not going to have to wear a burqa to cover up the fact that I am missing part of my jaw.  Sometimes it's hard to have positive thoughts.  But I have friends.  And I have Little Frankie.  Nothing distracts like a three and half year old shouting "Look at me Grandma!" 50 times.  And Emma.  Nothing comforts like holding a one year old fresh out of her bath in her jammies.

And finally, if you are reading this - go to the dentist!

The Safety of the Nation's Blood Supply

Before people understood exactly what HIV & AIDS were, my son Tommy needed to undergo an operation to repair a heart defect.  He had been born with Patent Ductus Arteriosois.  I thought I was going to die.  My beautiful, perfect, blond, blue-eyed baby was going to be sliced open because a connection which nature should close when a child leaves the womb had failed to do so with Tommy  I was told that unless it caused problems, they would wait until he hit a certain age and weight.  So for a couple of years I blocked this news.  But then Tommy hit the zone.  He was the right weight to tolerate the operation, but too young to experience the danger of embolism.  Because you see the connection never grows and the older he got, the more blood was rushing through that small connection.

It was the early 80s and there was no Internet, no social media.  But Time & Newsweek and other things I read talked about a gay cancer.  No one was quite sure how it was transmitted.  The blood banks didn't know how to screen for it.  So I asked how much blood would possibly be used during the course of my son's operation,  It was explained that they weren't set up to have blood donated & earmarked for a particular patient.  I told them to figure it out.  Because any blood going into my son's body would be hand selected by me.  I insisted, they relented.  I'm sure they thought I was a little hysterical.  But my mother said I was right and that's really all I needed.  They said 3 pints, but set up five donors.  It wasn't as easy as I thought.  My Dad was on anti-biotics.  Jennifer was too young, etc.  So we ended up with his Dad John, his godfather Jim & me.  I had my brother Frank and cousin Danny in reserve.

They didn't end up needing any of it and it was donated to the blood bank.  Everything went really well and they were able to get by with a blood pharesis machine.  Coincidentally, my Dad was an executive at Haemonetics and a brand spanking new blood pheresis machine with a team of techs was present for the operation.  On the first anniversary visit, the doctor said they changed everything in the blood bank and now everyone who could came in donated their own blood to be used on themselves.

John and I donated blood regularly.  We were civic minded folks.  One of the first clues I had that something we wrong with me in 2007/2008 was the despite living the Atkins Dream diet, green veggies and red meat, I was rejected twice during community blood drives.  Both times my iron level was too low.  What?  How could that be possible?  But I let it slide until the summer of 2008 and the doctor said I was anemic.

I would never again try to donate blood.  When my Multiple Myeloma diagnosis was officially made, I was warned to never donate blood or blood products.  I remember thinking, "Duh"!

When I started on Revlimid and later on Pomalyst I had to/have to answer a survey every six months or so where I state repeatedly several different ways the I will not donate blood.  Every time I think "Who is the fucking jackass who is trying to donate blood?"

Over the course of my fight to beat back my MM, which can't be cured, I have received blood products.  I don't worry too much because I know that blood is being screened for HIV, -people exposed to Mad Cow, people traveling outside the country, yada, yada.

But lo and behold, just when you think some people have common sense, real life kicks you in the pants.

Gov Brown of California has signed  SB 239 allowing people who are HIV positive to donate blood and not notify the blood bank of their HIV+ status.

Because you see, these poor little HIV+ patients "felt they were being criminalized.''

What?  I can't donate blood and I don't feel criminalized.

Is donated blood some right in the Constitution I missed?

If you know you are HIV+ and you attempt to donate blood, you are the scum of the earth.  And I better never meet up with you.

If your feelings are worth risking someone else's life, you are subhuman and your feelings of inferiority are real.

TSA Comes For My Candy... It's War!

Ok, so I am moving from one hide-away to another today.  Flying from PVD to BWI.

I booked early.

I got a good deal.

I was packed and ready to go in time to walk through the apartment a few times to make sure I had everything.

I was here two hours before my flight.

I checked my luggage so I was unencumbered.

Now I fly somewhat frequently and almost always Southwest, so a lot of the time I get TSA Pre-check.  That would mean, my light sweatshirt and sneakers would stay on.  My liquids stay in my one bag (size of a small backpack).  But just in case, my liquids were in a baggie.  So it ends up being a regular check-in.  I take off my sneakers, my socks are pristine.  My sweatshirt is ready to throw in a bin.

Surprise!  New rule!  All candy and snacks must be out of my bag and in it's own bin.

What?

Rewind five hours, while grabbing a few things at Stop & Shop, I bought a dollar box of candy.  Then to save space, I took the box of individually wrapped "Chocolate Bit O'Honey" and dumped them in the bag.

So I had to step out of line, dump my overstuffed bag.  I don't check electronics or prescriptions.  There is no line to speak of, I waved two people around me.

Then someone asks why the candy/snack rule.  The TSA guy says that sometimes food gives a false positive for explosives because of it's proximity to wires (phone chargers, etc.)

Bullshit!

Did I mention it's steroid day?

May Day

Friday was chaos at the infusion center.  I didn't cause it, but I was suffering 2nd order effects. Normally when I have an infusion scheduled, I don't schedule anything else.  They can start late, run late, I can feel crappy, etc.  This past Friday I was scheduled for Pomidronate, a two hour infusion that takes anywhere from three to five hours​.

But just this once I scheduled a two o'clock appointment at the Eye Center in the same hospital complex.

Infusion room was backed up.  I was in the waiting room.  They decided to send me down the hall to have an IV inserted so my tests could get rolling. That seemed a smart move.  But my veins weren't cooperating.  They've been less co-operative as time moves on.  Dr. Miller told me that I need to work with a stress ball to build up the underlying muscle and believe me, I will!

It took several tries before they called in their big gun.  Between that and giving up me left arm they got the IV in place.  It try to keep all the nonsense on my right hand/arm because I am left handed.  Then there is a 30 minute wait for test results. I ran up to the other end of Washington and ran errands.

But sadly, despite their efforts - my actual infusion began moments after 12 noon.

There was just no way I was going to finish and haul ass to Biewend by 2pm.  So the eye doctor's scheduler offered me June or Monday.  So I picked Monday.  But it didn't work either.

And I'll be honest.  The last place I want to be on May Day is two blocks from the Common or in South Station.

I ended up with June.  Sigh.  Gotta get a stress ball.

March 20th

So, if you look back in this blog you'll see how much I love my birthday.  But it isn't always fabulous.  Like today.

Saturday was high energy and I was getting lots done.  Until as I was walking up to Tom's door from the sidewalk, I tripped. I put my hands out and landed on my right side.  The granite step hit right under my armpit and my side.  It took my breath away.

It's slowly getting better, but of course, it gets aggravated when I forget and move a certain way.....or hiccup.....or take a deep breath and heave a big sob because for the first time since 1988, no Frankie.

Six Months

I've made it six months.  Not a happy milestone.

I am hiding out in Annapolis.  I wonder if that's fair to Tom?

Someone said the other day that now he would always stay young and handsome.  Please... he was always gonna be handsome!

Last Saturday, January 21st would have been Frank's 29th birthday.  I have to keep these things positive for his son.  So I gathered some of his friends and had a party. I know it sounds weird; but it went just as I had hoped.

But I can't be positive today.