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.

Saturday Afternoon

The holidays were tough.  Thank God for my grandson Frankie or I never would have gotten out of bed on Christmas Day.  But I am glad I did because then I spent New Year's with Frankie and Britt and beautiful, smiling Emma.  And it rocked.  I got bonked, spit up on, licked by a dog, fed & changed Emma, answered "Why?" 57 hundred times from Frankie and I loved it.

And January so far has been stressful chaos with the move out of Rockland.

But now I am in Staunton with Tom.  The most pressing questions are "What do you want for dinner?" and "Have you seen my phone?".

Speaking of my phone, last Friday before the snow storm, a small black circle appeared in the lower right hand corner of the glass display.  Everything still worked and I could use it, as long as I could see that part of the screen.  But slowly Saturday, the spot spread.  Sunday nothing was visible.  So Verizon said that it can't be repaired.  I can submit an insurance claim, pay a deductible and get a new phone.  But I will lose stuff.  To be honest, I don't want to lose any text messages or anything Frank might have sent me.  I know it's silly.  But to buy myself time I just had them switch over to an old, old flip phone that I unearthed while packing and moving.  But no contacts.  So if you are my contact, call or text and identify yourself, lol.

But I can live life without a smartphone.  I don't think I could in Boston.....no Uber app on my flip phone. Or "Next Bus" or "MBTA" or "Kindle".  But in Staunton I have Tommy as a driver and there is a nifty little trolley system here that picks me up two or three doors up the street.  In Boston, my dear friend Shema had to sign into my Uber for me and send them my way.  That would get old fast.  So I have time to think about what I want to do.

But for now, no thinking.

Sometimes I wake up and think "What time is it?  What do I have to do? Am I late?"

But the answer is "Who cares!" and I open a book or go back to sleep.

Hanging With Frankie, Jr.

Easily the best part of my life even before I lost Frankie, Sr.  And my biggest consolation.  Every night and every morning I thank God that he is part of my life.

I had a great time in Virginia with Tom and I'll be back there soon enough.....but I missed "Frankie time".

Although he treats me worse than I'd ever let any man!  Today we picked up some deli ham for lunch.  I set him up with his and went to fix mine.  I sat down, he had finished his ham.  He likes things separate - ham on one side, bread to the other side.  So I offered him a bite of my sandwich.  Thank goodness I had cut the sandwich in half; he filched the ham and handed me back the empty roll.  Did I mention the enormous smile on his face?  You better believe I ate my other half pretty quick!

By the way, I am suspended from Facebook.  Some random fraud prevention check?  I had to cover everything on my license except my name, picture and date of birth; then take a picture of it and send it to them.  Well they couldn't see the date of birth.  So I have to enlarge it & resend it so they can be assured I'm not thirteen.

Sigh.

First Week In Virginia

It's been good!

Hanging with Tom.  Going through stuff that's here.  Spending time with myself.

And - bonus - I found an old pair of glasses!  I still haven't done anything about the glasses I lost in July.  It was the Monday before Frank passed.  Replacing them dropped so far down the list.  There was a time before I had to stop working that I got a new pair every year.  I had great insurance - thanks Bette - and I just never thought not to.  Then one year I had to switch to bifocals and this pair went in a box.  Cause you know I never throw anything away.  Or at least that used to be the case.  I have had to get more ruthless with that.  Anyway, I was sorting through boxes, looking for stuff to throw away and I found these.  They are not bifocals and they are at least 8 years old.  But I can see distance and go to the movies again!

Tom made fun of the frames, but I assured him that they would have been the height of fashion at the time because Bette picked them out.  I clearly remember stopping at the place in Pembroke with her on our way to Thursday night dinner.  And that gave Tom pause because Bette is always "put together" as opposed to his "thrown together" mother.

I've got another week here.  But I am not sure much more will be accomplished.  Last night was my 8th (out of 14) night on Pomalyst.  It's effect build, so as the 2nd week progresses it's more naps and laying around.  But I'll still spend it with Tom!

I Guess I Am Full

So full of grief and tears, that I can't tamp it down any more.

Everyday there is something new.  One day it's little Frankie finding a book in a box in my bedroom that Frank bought on how to be a better father.  Another day it's realizing that I have to take Frank's name off of my health care proxy.

And God help the person who aggravates me!

Is it because all the heavy lifting is done?  Making sure the right people knew.  Planning the celebration of life.  Listening to all those people who wanted to talk about Frank.  Taking care of his affairs and possessions.

All that's left is time to think.

Whatever it is, I knew I had to leave Boston.  I needed the opposite of the theme from "Cheers".  I needed a place where nobody knows my name.  So I jumped on line and used all my Amtrak credits to arrange a train out of Boston, down to Staunton.  I need days to sleep and cry without worrying who can hear me and who I might upset.  And I need to make Tommy dinner and listen to what he has to say.

And considering how close I am to smacking the two old people behind me here on Amtrak train 65, I can't get to my hidey-hole in the Shenandoah Valley fast enough. They boarded somewhere in Rhode Island and haven't shut up since.  At one point when I was trying to sleep (I brought pillows), she began reading him news stories off of the Internet.  It was 1:30 in the friggin' morning! And apparently the two foot rests provided at her seat were not to her liking because I looked down at my arm rest (that I had wiped down with antibacterial wipes) and saw her dirty shoe!  I quietly said "For Heaven's Sake" and she pulled it away.  He just whines "Why is the train stopped?" and "The train is moving so fast I can't stir my hot cocoa!"

Thursday, my new least favorite day of the week was also Infusion Day.  I got up early so I could vote - it was Primary Day here in Massachusetts.  Packed.  I don't really need to transport stuff between Boston & Virginia, but I had some stuff I was going to ship down, so I figured I'd put it in suitcases and check them and save the shipping costs on some stuff at least.  Anyway, then it was off to Tufts.  I had my gadgets & a magazine and snacks and water and lunch.  I was prepared. After entering the main lobby, I walked over to a bench to pull my stuff together.  Hitch up my shorts, put my Charlie Card away, sling my backpack.....and I sensed someone moving into my personal space.  A woman about my age asking where her purse was. I told her it wasn't here.  She gestured to my bags and said she left it right there.  I said well it's gone now and I pointed out a guy in uniform "Go talk to that guy."  Then she became a little more insistent telling me she put her purse right there before going into the Au Bon Pain next to us.  "You left your bag and walked away?  That was stupid." Meanwhile, I am proceeding with what I am doing, gathering my stuff.  "Can I look in your bag?"  My head snaps up "No, you can not look in my bag, now get the hell away from me!"  She turns to the guy in the blue uniform (hospital security, BPD, I don't know I haven't replaced my lost glasses) and he turns to walk away. She looks at me surprised "You won't let me look in your bag?"  I just walked away.  I felt good, like I had opened a valve and let a little pressure bleed off when I told her to get the hell away from me.

I Made It Through Thursday

I don't know how, but I did.

4 weeks.  28 days.  I think I will hate Thursdays for the rest of my life.

All day some part of my brain has been screaming FOUR WEEKS AGO.

But I kept pushing it away because little Frankie has been here since Wednesday evening.

I told someone today that I am still not entirely sure it happened.  Maybe four weeks ago I had a break with reality.  Maybe it was five minutes ago.  Maybe Frank is fine and I am locked up somewhere.

This can't be my life.  People are too stupid.  People are saying the most astonishing things to me.  I go through this a little with the cancer.  People find out I have cancer and they tell me about theirs or their spouse/sibling/wife's nephew's stepmother.  And now people try to tell me about someone in their life struggling with addiction.  Or someone they lost to addiction.

Most of them mean it as a comfort. And it is.

But some want some kind of answer and I want to scream "If I had an answer, my kid wouldn't be DEAD!"

But the most ridiculous one yet was someone who proudly told me that they had not spoken to their addicted loved one in years. What?  I understand that you can't enable.  But you don't withhold your love, your caring, your very presence.  If there is one clear lesson to be learned from Frank and I, it's that you always make sure your children know you love them.  No matter what the circumstances.  You never know.  You could be in my shoes at any minute, for any reason.  I don't understand how this person didn't see my horror.  How it didn't freeze them in their tracks.

So now I work my way through until the next Thursday.  Or not.  Maybe I am sitting in a Geri chair waiting for more meds mashed up in applesauce.

My Son Frank Has Been Dead For A Week

How bizarre to type those words and not wail like a banshee.  I can see the screen because while I "leak" nearly constantly, I can pretty much hold it together.  Why?  Because there was nothing left unsaid between Frank and I.  There are no regrets and no guilt.  My son knew I had his back.  Would we fight like cats and dogs over certain life decisions?  You bet.  But I backed his every play.  Same as Tom his older brother.  Same as Danny & Bill his brothers from other mothers (who coincidentally turned out to be women I loved, Patty & Christine).

Last Thursday, July 28th around noon, Francis Xavier Miller, Sr. lost his battle with addiction.  I sat in Bay 15 of the South Shore Hospital ER and whispered in his ear that I wasn't leaving him, just passing him over to Mama Kelley his beloved great-grandmother (my grandmother) and Grandma Marie his loved and missed grandmother (John's mother).  And that I knew there were plenty of friends lost too early to the same insidious addiction to load up the roster for a wiffle ball game where he was going.  I pulled Frank's left arm out from under the sheet and rested my hand in his.  Between the weight of his hand and his fingers being slightly curled, I felt just like he was holding my hand.

Frankie wasn't my plan.  He was the result of a hard fought campaign by his brother Tommy, with support from my sister Grace and my ex-husband John.  I thought just one was just fine.  I used to joke that children aren't like Lays potato chips, you could have just one.  But Tommy didn't appreciate being the only - only child in the neighborhood.  And Grace was ready to have a boy, so that with her daughter Deb (my goddaughter) she would have the matching salt-n-pepper shaker set.  The final battle was pitched at my birthday party in 1987.

Frankie was born January 21, 1988.  At the end of a ridiculously short labor during which I acted like it was the scene from Aliens where the alien eats it's way out of Kane, there was Frankie.  Dr. Grady asked "It's a boy, what's his name?"  I replied "Francis Xavier" and Dr. Grady repeated that and said it reminded him of a priest or a crooked politician.  Well we all know which way that ball bounced.

Frankie was handsome, so was Tommy, but while Tommy was the spit of his father, Frankie had my coloring.  And he was so friendly and adventurous.  When he was three he was in love with Cindy Crawford.  I remember him dashing from the bathroom, foaming at the mouth in mid tooth brushing session at the sound of her Pepsi commercial.  She was his girlfriend.   When someone pointed out that Cindy Crawford didn't know him, he replied "But if she knew me, she'd love me."  Such confidence.  At the time Crawford was married to Richard Gere and they were building a house in Duxbury.  We were afraid someone would tell Frankie and he would set off up  Route 3A to steal her away from Gere.

People kiddingly called him "The Mayor of Rocky Nook".  Like Red Rizzo, he knew everyone and everyone knew him.  He took it seriously, not in a power kind of way, but in a responsibility kind of way.  People asked him favors and he always tried to help them.  When there was a beach association task, he never questioned going and doing his part.  But most of all, he believed in "Everbody plays or nobody plays."  Frankie didn't allow other kids to be left on the sidelines.  And that never changed.  During this last week, people have called and texted and sent Facebook messages telling me how Frank did this that and the other thing for them.  Always things he didn't have to do but did anyway with a smile.

I have never been ashamed of Frankie and his fight with addiction.  Frustrated?  Bewildered?  Helpless?  Oh yes!  Frank had a hard time getting sober because he had a hard time giving over power.  He would go down many paths and say "This will work, I'll just change this."  or "I'll just do this step before that step."  But finally he found the right path and surrendered himself.  The last two years he was largely successful.  Unfortunately, with addiction, you are never free, you are never fixed or cured.  Sometimes the best you can hope for is longer periods of sobriety and shorter falls off the path.

The part that was hardest for me to accept was the fact that your recovery includes going back and pulling others up and out with you.  But Frank embraced that.  And now I see clearly - OF COURSE HE DID, lol!  It was the adult version of "Everybody plays or nobody plays."

Frank wasn't some mythic figure.  He stumbled.  He hurt people.  And he wasn't universally loved.  There were people who disliked or resented Frank for one reason or another.  Not the least of which was his struggle with addiction.  There were people who turned away from him.

But Frank forgave everyone.  I used to joke that Frank was sadly born without the gene that allowed a person to hold a grudge.

This isn't the best pic of either Frankie, Senior or Junior.  But it's recent and it was a happy and fun day.  Bunker Hill Day, 2016, at the parade in Charlestown.

Sadly, my much loved son is in the building you can see over his left shoulder.  Carr's Funeral Home.

July 4, 1976

Some of you think this will be a post about our country's Bicentennial.  Which was a grand time in Boston.

But it's not.

It's about a far away place - Entebbe, Uganda.

I've admitted dozens of times in this blog, that I was a bit of nerd.  That from high school on I read both of Boston's big dailies, the "Globe" and the "Herald American" as it was known at the time.  In the general frenzy leading up to Boston's celebrations and the Nation's celebrations, there was another news story.

Terrorists had hijacked an Air France plane to supposedly exchange passengers for some other imprisoned terrorists.  To be honest, at the time I took them at their word.  But now, older and more cynical, I think the point was just to kill Jews.  This is not to say I ever in my life sympathized with Palestinians.  However, I did at the time think they were reasonable enough to be negotiated with.  People younger than me or with shorter memories may not realize that other planes got hijacked.  Other hostages were taken.  And police or governments worked it out.  People took planes to get to Cuba or for ransom.  At the time, to me, there seemed no reason to think this would be handled that way.

This was a mere four years after Munich and in my mind, the Germans had messed that up out of arrogance.  There was strife and fighting all over the world.  Northern Ireland was in a perpetual state of unrest.  Just a few months before Palestinians had hijacked this plane, some crazy group had bombed a courthouse in Boston

So back to Entebbe and the hijacked plane which by the 3rd of July had had all of it's non-Jewish passengers separated and released.  The crew however, wouldn't leave and I have the greatest admiration for them.

Being more wise in these matters than a 15 year old reading along in Boston newspapers, the Israelis knew there was no reasoning with the hostage takers.  People can say till they're blue in the face that Palestinian terrorists are "nationalists".  Whatever.  First and foremost they are followers of Islam.  The Jewish State of Israel had been dealing with them for ages.  They knew that when a follower of Islam takes up arms and tells the world their grievances, it's just a cover.  Whether it's "Black September" or the "PLO" or "ISIS" or "Al Qaeda", you can't "understand" them, you can't "reason" with them. A wise man once told us that "An appeaser is one who feeds a crocodile, hoping it eats him last".

The Israelis sent their own people into Uganda just before midnight July 3rd.  But with the time difference of 7 hours, it all happened in time to be front page news for America's birthday!

Truth be told, that was the highlight of my day.  The rightness of it.  The justice of it.  And now I know the wisdom of it.

I Don't Get It...

....why aren't there more arrests?

Today in Sacramento a group of Americans tried to assemble at the California State Capitol.  And police stood by while a larger group of counter-protesters assaulted the first group.  The larger group used a heckler's veto (which is not protected free speech) to stop speech they don't like.

I don't care what the first group believes or wants.  I care that their right to speak freely in the public square was violently suppressed.

I don't care that in a civil discussion I may have agreed with the counter-protesters beliefs.  Once they crossed the line to violate the civil rights of others, they are wrong and they lose my support.

Not to mention that the counter-protesters also attacked representatives of the media.  I may whine all day about the media and their biases, but, you don't put your hands on them.

It was galling to watch the interviews after the fact with these criminals, and that's what they were.  The counter-protesters were proud of the fact that they had just committed these offenses.  They showed up, many with their faces covered, intending to do harm.

But the worst was watching the police do nothing.  A handful of people were arrested.  There should have been dozens and dozens of arrests.

Getting In Trouble

My previous post - November, 2015 - got a new comment -

Maggie, you okay ? Haven't heard from you since ........ November 8th !!

I wish you well, friend.

A follower from ....... oh, hell, everywhere ........... US Navy Retired RMCS (SS)

24 June, 2016 18:00

I'm sorry! This blog has really fallen behind on my list of priorities.

Things are good!  Still in active chemo, but alive and fighting beats the alternative.

I get to spend lots of time with my grandson Frankie who is an absolute delight.

My social media focus has shifted to Twitter.  I still read serious stuff and think serious thoughts, but my output.....

Thanks for the kinds words.