Sunday, November 08, 2015

Guess It's Been A While!

Last post was September 26th!

Well sorry about that.  But I can only do one thing at a time.  And for the past six weeks it's been packing, apartment hunting and moving.

Now, instead of the majority of my time being spent in Virginia with my son Tom keeping an eye on me, I'm back in Massachusetts!  One of my oldest, dearest friends from grade school has stepped up to the plate.  So Kathy will call 911 if I hit the floor in a heap.

God it's good to be back!  I loved spending all that time with my oldest son Tom, even if I had to be in Virginia to do it.  And now I am near Frankie and Danny & Bill.  But let's be honest - the best part is I am near my grandson who turns two years old today!  I have a fairly large bedroom & will be getting a second bed for sleepovers!  I saw a pirate ship toddler bed online, but even I know $400 for a toddler bed is ridiculous.

And I don't know if it was pity or just to shut me up, but Dr. Miller cut my Pomalyst dose.  Numbers are in good ranges but he won't completely stop it, so we don't know what would happen.  Would the numbers shoot back up?  Is it a durable response?  A partial remission? But I'll take whatever I can get, so I am grateful for the lessening of the dosage.

So now that I'm settled, there are some events this week coming up that I hope to attend and blog about.  See if I can't get this blog slightly back on track.

Saturday, September 26, 2015

I Am Awake......

.....and showered and properly medicated.

Ahead of schedule.  This month's trip was so bad that I estimated that this would not happen until Sunday night.  You know, in time to catch the 4th episode of "Fear The Walking Dead".

Besides Pomalyst, every other month I get an Aredia infusion.  On those months, I am even more disorganized and confused.  I should not try anything ambitious during that time.

This was an infusion month.  And yes, I tried something ambitious.  And yes, it was much harder than it needed to be.

The next infusion is November 22nd.  If someone would be kind enough on November 18th as to tell me not to schedule anything else until November 25th, I would appreciate it.

My time in Virginia as more than a visitor is nearly at an end.  I think my eagerness to end it, is causing these bad decisions......yeah, that's my latest excuse.

I joke about "never winning with the 50/50 questions" but really, that's very true.  If I am faced with an either/or situation, I almost always blow it.  This happens if the question is high stakes or of no consequence at all.

And I do a lot of "counting my chickens before they are hatched".  I always have.  I am constantly making plans based on things happening in a certain way.  Things I have no control over.  And there really are things I have no control over.  I, Princess Crabby, the Empress of the Moat, she who has no equal, Princesa Malhumorada have very little control over things in real life, as opposed to what happens in my imagination.  This really messes me up!

When I go to infusion it's supposed to go like this - I check in and they take my vitals, put me in an infusion room, take a couple of vials of blood and send it off for testing.  They can't give you Aredia if certain things aren't stable.  Plus, with a blood cancer.....there is lots of blood tests.  Makes sense, right?  Then the numbers come back in thirty or forty minutes and they send to the in-hospital pharmacy for the Aredia.  It can't be ordered without the test results.  Pharmacy sends the IV bags up, they hook it up and attach me ( I already have an IV in my hand or arm from the testing) and from that point, it takes one hundred and twenty minutes.  There is a product that is faster, Zometa, but I tried it and had a crazy flu-like reaction.  So, being reasonable (not my strong suit, but I can be) this process should take a little over three hours.  When I have nothing to do after an appointment, it takes about three hours.  But if I schedule anything for can take (and has taken), six or more hours. I should not plan anything for afterwards... yet I do.

Because I never learn!

Thursday, I wanted to go look at an apartment in the evening.  And, I planned to fly from Boston to BWI at 5:50 am on Friday morning.  I chose that flight to save money and be in DC for the train to Staunton, which only runs on Friday, Sunday & Wednesday.  I wanted to hurry back out of Boston because my monthly visit there causes me to spend an inordinate amount of money.  Once I actually have a place of my own to live back in Boston, this won't happen.  So, in order to save, I decided this month would be a "get in/get out" month.  No visits, no family time, no dinner with friends.  In.  Out.

Getting in was no problem.

I was scheduled for a 2pm appointment and I had scripts to fill.  So I called and asked if I could be moved up and was offered 1pm.  I went in that morning and picked up the prescriptions, so I could check that off the list.  Usually I wander around and get lunch while the blood is being tested.  This can make the process longer because sometimes I am not back when the IV bags come up.  But instead I went and got lunch before I went to the appointment.  I arrived, fully prepared; lunch, books, snacks, water, charger, everything so I could sit and not move, at 12:45pm for my 1pm appointment.

Is My Marine paying attention?  Early and fully prepared.

I didn't leave until 5:45pm.

And I am always groggy after infusion because the majority of this time I am sitting in a geri chair, in a room that is too warm for me.  So I doze.  I am not a napping person.  Naps don't help me and they make me....CRABBY!

Now, at this point I could have cancelled the 5:50 am Friday morning flight and stayed until Sunday when there would be another train to Staunton.

This was my "50/50" decision.  And I blew it.

I didn't look at an apartment.  I didn't cancel the flight.  I was like a zombie at Logan, BWI and then Union Station.  I was nauseous on the plane.  I fell asleep last night without a proper meal or the right pills at the right times.  That's why I predicted that I would not surface until Sunday.

So, don't ask me to do anything November 22nd.  And don't let me plan anything for November 22nd.

Sunday, September 13, 2015

When Was Steroid Day?

I don't know, I'm all messed up.  So I guess it's today.  Wasn't bad and gave me the burst of energy it sometimes does.  You know, where you don't just throw a load in the washer, but you clean the washing machine.

Anyway, a couple of nights ago, I somehow missed the lyrica and of course couldn't sleep and it feels like the onset of flu.  Muscle/joint pain, yada, yada.  So I slept through the next day's morning meds.  I think that's how I missed steroid day.  And my sleep schedule slipped right into midnight to 3 pm.

And the glasses still aren't fixed.  And the humidity and heat were killer.  And waaahhhhhh.

But today I was up before noon.  Took the steroids,  The humidity broke.  Whew!  Just in time to prep for "Fear The Walking Dead".  My Marine better be caught up, cause I'm tired of getting chastised.

Hopefully, on October 1st, my best pal from 7th grade and I are moving into a 2 bedroom together.  We could have chosen from dozens of places by now, but she has two cats & wants off street parking.  It's stressing her to the point where her boss is looking to find us a place.  You know I don't care about parking, animals, where the laundry is, bedroom size, sharing a bathroom.  So I just keep saying pick whatever makes you happy!!  Although it was a bummer to pass up an apartment 5 doors down from my previous Charlestown address b/c of size. The important part is Boston & that she'll be just as good at that balance of watching me and ignoring me as Tommy is.

So I think I'll whip out the Hershey's cocoa and make something.

Thursday, September 10, 2015

Well, Thank Goodness For Tommy

It's not like I need nursing or anything.  But while I am on Pomalyst (14 nights of pills) I am clumsy and disoriented.  Needless to say, accidents happen.  Spills are legion.  I have to put a hand on the wall when I walk from my bedroom to the bathroom here in Virginia.  The hall is a converted porch and there is a slight pitch.  On Pomalyst, this might hall might as well be a carnival fun house.

So the other day I was walking to the post office to mail some silly little things to my grandson.  It is still hot here (really, even to the natives) and madly humid.  As I was walking I wanted to change from my glasses to sunglasses.  Unfortunately, the humidity combined with my butterfingers.....the glasses hit the ground and then I stepped on then when I tried to catch them.  I was actually lucky that I didn't hit the ground.

How big a problem is this?  Well, I have always been a bit of a hoarder.  That means the last two times I lost/broke glasses, I just pulled out an old pair.  Always meaning to get new ones....but I haven't.

I can't even believe how much of a pain in the ass this.  I have one undamaged lens, so I can watch TV if I sit still and balance them carefully. But I can't walk around with them.

Yesterday, not only did Tom have to drive me on my errands....he had to walk me through the aisles of the supermarket.  I couldn't read any signs.  I couldn't make out anything more than .a few feet away.

If not for Thomas Owen, how would I have found these delicious Mallo-Cups????  Thanks Tommy.

Saturday, September 05, 2015

Gypsy Hill Park Pool Breaks My Heart Again!

So, as I explained in the post above, sometimes the City of Staunton changes things and doesn't post it on the website.  They have a website.  It's a fairly comprehensive website.  I have used it to find out lots of useful things.  But they don't seem to update it,

As far as the pool goes, they have a dry erase sandwich board for that. so....for someone who has no car and takes the trolley, this can suck.  Cause you don't just walk to the pool.  I did that when I was young and I ran up to the Clougherty Pool in the Doherty Park at the top of Bunkah. Here.  Have some history from the always fabulous Helen O'Neil.  Grab a towel and some change for the ice cream truck "Bye Mum!" and I was off till I was waterlogged or more hungry than an ice cream could satisfy.

But now?  Towels, book, water, snack, sunscreen, sunglasses, hat...and the list goes on.

I set my alarm, did my morning chores, packed my bag and Tom drove me to the pool.  I could walk it, it's just under a mile and a half.  But *cue whiny voice* it's hhhhhooottttt and I have a bbbbaaagg.

As we pull up I say to Tom "Where are the people?  Why is the pool cover on?"  Tom puts on the "Down South" voice and tells me "Ah don't know".

I get out of the car and read the sandwich board "Pool closed for season due to lack of guard".

HELLO???  I was a lifeguard.  Sure it was literally twenty years ago.  And kids in Rocky Nook said I was the meanest lifeguard evah.  But they didn't even ask.

So now I am sitting in front of the AC, pouting.  I can't even do what we did when I was little and sit in the yard with the garden hose.  Tom took it and all the yard tools to go help a friend at their new place.

Monday, August 24, 2015

Curses! Foiled Again!

There is a public pool in Staunton.  It's in Gypsy Hill Park and it's very nice.  Lots of little kids, but they stay in the shallow end near the slide or sit on the edges of the pool.  Long story short, the deep end is never crowded.

I got to this pool late in the season because someone told me it wasn't nice.  That's my own fault for not checking it out myself.

The official end of summer is upon us as Labor Day approaches, but that doesn't have a lot to do with the weather.  But those are the rules and the pool will close for the season on Tuesday the 8th.  So of course I want to take advantage of all the opportunities left, right?  So I rush through the things I have to do today, which of course means they all took longer than usual, right?  The hurrier I go, the behinder I get.

But I make it there by 4 and it closes at 6.
Yeah, not today.  And not tomorrow.  Because even though I read the signs and checked the website.....there is apparently a super secret rule.  Once school starts, the pool is closed during the week.

It's ok, I leave for Boston Wednesday.  We don't close the ocean.

Monday, August 17, 2015

Read This With Pepto Bismol Handy

So you know I was already super aware of "The Weather Underground" and shitty Bill Ayers and Bernadine Dohrn.  I don't get how more people aren't outraged about the crap they pulled and how they smugly walked away from it.  I am constantly agog when people buy the Ayers/Dohrn malarkey that dismisses any talk of their actual & attempted violence and rewrites their past through rose-colored, we-were-trying-to-save-the-world lenses.

And I am well versed in 60s, 70s & 80s history.  I lived through it, I watched Huntley & Brinkley, I read various newspapers.  Later, I was interested in history, so my reading tended toward that area.

But somehow I missed a bigger picture.  Maybe I wasn't ready to see it as a whole.  I knew, as I said, about Weather Underground.  And I knew about the Black Liberation Army, the Symbionese Liberation Army, the FALN; I could tell you who Party Hearst, Joanne Chesimard, Eldridge Cleaver and Malcolm X were.

But here in this book, Burroughs lays out all of these groups and people and their actions chronologically and in depth.  And like someone vividly bringing back the circumstances of a terrible wound that is scabbed over, Burroughs made me feel outrage.

I highly recommend this book.  It's interesting.  It's well written.  And it remembers people who should be remembered, the victims of these terrorists.  The groups weren't protesting, they were destroying & murdering. 

Saturday, August 15, 2015

Yeah, I Know.....

I never thought these words would come out of my mouth either.

"Too much."

These "Brownie Batter Oreos" are just too much!  It's not like licking the spoon, it's like eating the bowl and then feeling queasy.

Thursday, August 13, 2015

The Guy Who Lives Above Tom Just Stepped On My Last Nerve

It's official, I hate the clown who lives above Tom.  When my son moved in eight months ago, the first thing we both noticed was that the people upstairs wore heeled shoes day and night. Sooooo ignorant & thoughtless.  I tried to get a conversation started about it (nicely, because Tom would kill me otherwise) but the guy would always go off on a tangent.  And I only understood every other word accent, missing teeth, idioms.  And I found out stuff I didn't want to know - like how unreasonable the landlord was to beef about him stacking cardboard boxes on top of his heater.  Or that he didn't use the heater because he used electric space heaters he found at the dump.

He also has a junk heap on the porch.  This includes a broken cooler left behind by the previous tenant (He hoped to sell it for $5.00) He smokes beside his front door, which renders our window unusable. And of course, it's just gross at that end of the porch.  He also appropriated the welcome rug left by the previous tenant and put it at the edge of the porch.  So it's just rotting the wood since it gets soaked everytime it rains.

After a talk with the very, very nice guy downstairs, I realize this was a problem for the previous tenant as well.  Plus, as is obvious to me, this conversation confirms the three upstairs (husband, wife & daughter) are special.  Great.

So one day I'm on the porch and he comes out to smoke.  I say in a very nice, mild tone "Hey, has anyone ever talked to you about wearing outdoor shoes upstairs?"  He looks away, no answer.  I wait.  Then I say "Did you hear me or have I upset you?"  He got up and went inside.  Since then I have completely ignored him.  He tried to make nice, offered to help me carry something.  Is that a game?  Ignore me and then play good neighbor?  No.

Then today there is a water problem.  It takes me a while to figure it out.  There is some kind of blockage just below me.  It caused my washer not to drain.  I did all the checking, but slowly cause it's day 2 of Pomalyst. Constant mopping.
Ok, it wasn't this bad.

Then I am standing in front of the tub, everything cleaned when the washer upstairs begins to drain.  The tub fills.  The toilet bowl fills and overflows. The U shape pipe behind the washer gushes.  I throw down towels and run out to the upstairs neighbors door.  Knocking.  Knocking.  Banging.  Finally, he answers.  I tell him to shut off his washer.  That it's flooding my everything.  I tell him I am calling the building's maintenance guy.

I go back in to Tom's apartment to make the call and mop up this new mess.  I can tell this stupid ass didn't shut his washer off.  He let it finish the cycle.

Now this guy couldn't know what was happening.  I'm not unreasonable.  But he does laundry all damn day, every day.  From 9:30am this morning (it woke me up) and it was still going at 5pm.  How?  There are only 3 of them?  Are they taking in laundry to supplement their income?

Was any of this which has me crazed?  Close but no.

The cardinal sin was this - when he finally opened the door and I told him to shut off the washer, he looked behind me.  What.  The.  Fuck?  Do NOT be afraid of who might be backing me up.

Thursday, July 09, 2015

Best Steroid Day Ever!

With Pomalyst, as with Revlimid, there is an accompanying low dose dexamethasone. A steroid.  Not the "up your batting average" steroid, but a muscle wasting, insanity-inducing steroid.  I have had bad steroid days where I was weak and homicidal.  I have had days where I get a burst of manic energy, they aren't good, but they are productive.  I have had headache like someone is squeezing my head in a vice and combing my hair hurts. But I've never had a good one.

Now I have read that sugar exacerbates these symptoms.  And there have been several times where I have successfully given up sugar for periods of time.  But never during chemo.  I don't really drink.  I haven't done an illegal drug in over three decades and even those were nothing to speak of.  I don't smoke.

No, sugar is my drug.  Chocolate, but any candy will do except circus peanuts - that's Muriel's thing.  Cake, pie, cookies, brownies, pastry, a source, I'm an addict.  As a matter of fact, in the most stressful times in my life, I pour Plain M&M's into a glass of regular Coca Cola and stir.  It's like maintaining sugar.

So while I am long past panic about Multiple Myeloma, no one can be serene about chemo.  No one can listen to the precautions and warnings and side effects and the be blase about popping a pill in your mouth that comes out of wrappings that say "Caution -Poison".

Therefore, preparation for my chemo days (7 or 10 or 14 or 21) always includes sugar.  Sometimes I give it a half hearted effort and it's fruit and vanilla wafers or loaded salads - natural sugars.  But a sugar is a sugar.

And I am the queen of "next month" or "Monday is a good day to start".  Actually that one cracks me up.  I no longer work, sometimes I don't ever know it's Monday!

And this month didn't start out special.  July 1st; toast with eggs, big salad with onions, carrots, tomatoes & dressing; cheeseburger with ketchup on a bun and red licorice whips.  Two hours after the last thing I ate, my first Pomalyst.  July 2nd was the first steroid.  They are taken on the second and eighth day in the morning (or what passes for it in my world) with food. It was a non-descript day, I laid around, no energy burst, but no rage either.

Then for some reason the next day, I just decided to do Atkins.  I have an on & off relationship with Atkins.  In 2003, I lost 92 pounds.  I kept the bulk of that off for years. But like the IgA numbers, that number has been creeping up.  I haven't really cared.

Anyway it's been surprisingly easy.  I don't see anything that tempts me, Tom & I don't have the same taste in snacks.  There isn't as much time to think about it, Pomalyst makes it hard to get to sleep, but once I get there.....I'm down for a minimum of ten hours.  Now that I watch almost everything on the DVR or the Amazon Fire Stick - no commercials to make me pine for something.  I have no go-to-dinner friends here as opposed to Boston, where it's a never ending cycle of restaurants and take-out.

So last night was the 7th Pomalyst.  Dead center of the cycle.  Making this morning the 2nd steroid.  And the 7th day on Atkins.  For non-Atkins people seven days doesn't sound like much, but it means you are in the zone; peeing purple, past the sugar withdrawal.  Now it's just a matter of not forgetting and eating something without tthinking.

I went to the Town pool in Gypsy Hill Park.  I packed frozen water & chopped up steak.  I have a new Jack Reacher book from the library.  The pool is much nicer than I had been told.  The shallow end was crowded, but the other end is fairly empty and 13 feet deep.  No one really swims.  They sit on the edge & dangle their feet.  They jump in and cling to the edge.  So it was basically all for me.

I swam.  I read.  I ate & drank.  I sunned myself and relaxed.

Only one, steroid symptom - a tightness in my throat when I walked fast or uphill.  That's it.  No fatigue.  No rage.  No weakness.  No vice like headache. Just relaxation and enjoyment.

If it's the sugar, I've got a lot of thinking to do.

Tuesday, June 30, 2015

Good News....Bad News..

So the good news is actually very good.  It overwhelms the bad news.

As of May 28, 2015, after 6 months of Pomalyst, my number has slipped just into the normal range.  A normal, healthy person has 50/60 to 350/400 parts per deciliter of IgA.  Serum levels of IgM, IgG, and IgA vary with age (most everyone's levels rise with age), gender (higher in men than in women) and race (higher in African Americans the white).  The Ig stands for immunoglobulin.  And here's a useless factoid, in a map of prevalence, the two countries with the highest rates?  Iraq and the Democratic Republic of Congo.  Go figure.

My number diagnosis in July, 2008 was 5850.  We've been up and down and over and quote Old Blue Eyes.  But on May 28, 2015, it was 349.

Bad news?  Dr. Miller says I can't stop taking Pomalyst.  I'm pretty bummed.  It's a quality of life issue.  Down for the count for 14 days, outright homicidal for at least 2 of those.  Recovering for 7 or so with recovery being harder with each month.  Then "living" for 7 to 9. Does that seem whiny and selfish?

How 'bout this?  It's making my hair fall out.  Dr. Miller seemed surprised.  He asked if I was sure.  Lol.  Yeah, I'm sure.  I remembered that it fell out with Cytoxan, but as it turns out, I also had hair loss with Revlimid in 2010.  I looked it up in this very blog earlier today.

So tomorrow night I start Pomalyst again.  It will be the 8th month.

Sunday, May 24, 2015

As Frankie Reminded Me......'s good luck.  Yeah if you and Mama Kelley say so.

While out for a short walk around the hotel's immediate area, I noticed a drug store.  I'd been paying $2.25 a pop for bottled water & figured grabbing some in the store would save a few bucks.  So I grab a 6 pack for $3.45 and I'm happy.  As I leave and walk through the covered parking lot,

I feel something on my head.

 I pray it's condensation.

 I walk back to the hotel like a beauty queen hoping nothing slides.  I get to my room and tip my head to the sink.  My sunglasses fall into the sink.

Not condensation.

So I got back in the shower, two hours after the first shower and wash my hair 27 times.

I was texting Frank a little later and shared my story in hope of garnering some sympathy.

"It's good luck." Was all I got.

Monday, May 18, 2015

USS Constitution Restoration

Yesterday, down in The Charlestown Navy Yard, they flooded Dry Dock #1.  This was in preparation for an extensive restoration of Old Ironsides.

You can watch this amazing project as it happens by following along at "Restoring an Icon".  Information, pics & more are available from the site. Contributors include USA Constitution's official account; the Naval History & Heritage Command Detachment Boston; USS Constitution Museum & Boston National Historical Park.

Bookmark this link!!


Sunday, May 17, 2015

"I'll Take 'The Letter M' for $800, Alex."

"Here's the answer - 'When people who aren't from Boston describe themselves or are described by others as being Bostonians."

Ding! Ding!

"Yes, Diane."

"What are things that are MADDENING?"

"That is correct for $800.  Please let go of the signaling button, you're breaking it.  Can we get someone out here to pry her fingers off our equipment?"

Yes, that is how I feel when some clown writes about Bostonians and then references non-Bostonians.  So & so from Newton?  Not a Bostonian.  So & so attending a local college or university?  Yeah, that person is a glorified tourist.

It's not a nebulous definition.  As you enter Boston, there are signs "Entering Boston".  There is no Boston/Hopkinton or Boston/Marshfield line, so no, you aren't "almost" either.

And some of the most non-Bostonian people ever are the people who own, run & edit the Boston Globe.  Bostonians who read the Boston Globe do so largely for the sports page.  The paper is owned by The New York Times. And even when editorial control as local, you're talking about Tom Winship, born in Cambridge and moved to Lincoln.  For pity's sake!  You almost have to go back to founder Charles Taylor to find a Bostonian!

So when Politico announces "Bostonians Queasy On Death Penalty" based on a Boston Globe poll...........I think I'm having an aneurysm.

Saturday, May 09, 2015

So, How'd You Spend Your Afternoon?

I washed this sweater with my summer bathrobe.  The robe had a tissue in the pocket.  So I spent mine with a roll of masking tape.

Friday, May 08, 2015

Maybe I Am Angry


First there are alllllll the stupid people whose tiny little minds can't grasp the concept of free speech.  Are you one of them? Here's a test - Have you ever said, "I support Free Speech, but...."  See that "but"?  That is your confirmation that your mind is not big enough to fully understand Free Speech in America.  Don't lose hope.  There are plenty of books to read that can help open your mind.  And if you say Pam Geller is "provocative like....", your comparison better be an apple to an apple, cause otherwise you are talking nonsense.  And Good God!, don't be like Chris Cuomo and cite some random, old case that doesn't even apply in hopes people will defer to your superior knowledge and let it slip without question.  The days where you could spout bullshit unchecked are gone.  There are too many people smarter than you who will have your nonsense forwarded to them and they will call you out.

Next, I ran out of a particular prescription.  I'm not supposed to name them, but let's say it's one that keeps me calm and normal and functioning as opposed to the others which actually inflict damage on me while damaging my cancer.  The pharmacy was supposed to call when it was ready.  They didn't, I had to call myself.  Yeah, I was miffed.  Then Tom was going to drive me to the post office to pick up two boxes I mailed to myself from Hyannis.  This is my 'travel hack".  At some point while traveling, I put what I want to have in VA, but don't want to carry in a box and mail it to Virginia.  The boxes were due Monday, I went Wednesday because that was when Tom wasn't working.  I am pretty independent here, but getting the two boxes back here would have been a little difficult.  So there was no slip in his PO box and I realized I hadn't brought the tracking slip.  Argghh, my fault, lets move on.  Then Tom asked where I wanted to go next and I said never mind, just take me back to the apartment.  But there were a ridiculous amount of stupid people driving around slowing us down.  Tom just kept an eye on me in case I jumped out and savaged the people who were stopping at green lights, driving in two lanes instead of one.  You know, people who needed a "come to Jesus" moment.

I was trembling and nauseous and I was Day 6 of Pomalyst (you know, the drug that's 70 times more powerful than Revlimid!).  So I made dinner and brownies and read on the couch.

Next day was better.  All meds were a go.  I had my tracking slip.  Tom takes me back.  Did I mention that I also need Tom cause it's his PO box and these boxes are addressed to him.  So I need him for this exercise.  He checks the box again, no slip announcing a box so we go to the counter.

Tom - "I am expecting two boxes".  I try to hand her the tracking slip/receipt from Hyannis post office.
Postal worker - "Was there a slip in your box?"
Tom - "No".  I again try to giver her the slip.  This time she takes it and looks at it.
Postal worker - "Well, what do you want me to do about it?"
Me (with eyebrows up around my hairline) - "Well this slip says it arrived here on Saturday the 2nd".
Postal worker - "Where is it supposed to be?"
Deeeeeeeeppppppp breath - Me - In my mind, "Look at the stupid slip you clown!!!!!!!!  With your clownish, Ronald McDonald not a red found in nature hair!  Scan the slip!  Scan it!  Scan it!"
Me - out loud "Here.  In this building."
She walks to a back door, picks up two boxes right next to the door on a shelf and gives them to us after checking Tom's ID.

We were laughing in the parking lot.  Thank God I didn't have the packing slip the day before when I was homicidal!  I would have gone over the counter.

So last night I watched the Dateline NBC because it was all about Tom Brokaw and the book he has written about his last two years living with cancer.  Like me, Mr. Brokaw has Multiple Myeloma.  I don't know what subtype or Stage, he didn't say.  I belong to a few MM email and Facebook groups.  I posted that I was surprised by what appeared to be a fumble by his doctors at Mayo Clinic.  Brokaw presented with back pain and was diagnosed with MM.  Then he went home to Montana, to an isolated ranch only to find himself in excruciating pain.  He was finally airlifted back to Mayo where he was told he had two compression fractures and a hole in his pelvis.  My question was "Why was he not given a full skeletal survey the day he was diagnosed."  They knew he had bone pain, why wasn't it investigated?  Now let me say, Brokaw never said he didn't have one.  He never said they asked him to have one and he refused.  I wasn't criticizing him.  And people in the thread got all defensive.  LOL!  Telling me that Brokaw's choices were his own, yada, yada.  I said yes, they are, reread the post, I didn't criticize him.  Then people defended Mayo.  Hello, they are doctors, not gods, mistakes get made.

Then this guy comes out and says he "senses anger in my posts".  I say no, I am just pointing out that IF doctors didn't investigate his bone pain or at least try, I feel that's irresponsible.  I am not angry at all.  He responds and says a second time, I seem angry.  I say "I am not angry, period."  Then he says it a third time and I say "Congrats!  I wasn't angry before, but now I am!"

What a clown.  Isn't that so irritating?  No matter what your situation, having some clown say "I sense your anger."  Especially a complete stranger?  WTF?  Shut up, read the post, respond to that, not the messenger.

And all this......wasn't even a steroid day!!!  LOL!

Monday, April 20, 2015

Mass Murder

Yes, that was what derailed my plans yesterday and today.

I was going to do my minimal cleaning yesterday and then watch alllllll the Sunday news shows.  I watch them all.  I talk back to the TV.  I tweet.

But I never got to it.  Because there were tiny sugar ants in the kitchen.  So instead there was intense cleaning and.......murder.
I mixed sugar and borax and put it out in strategic places.  I checked periodically to trace their route.  I put out more sugar and borax.

Today I cleaned everything on the counter and nearby cabinets.

Many ants were murdered.

Wednesday, April 15, 2015

Boston, Even Stronger Than You Knew

Today is the first #OneBostonDay
And it's going to be the first of many.  Because Bostonians don't let other people define them.  On April 15, 2013 two assholes tried to make it their day.  Joker and Speedbump (I will not give them even that little respect by naming them) tried to make it their day.  All about their view of the world.  But we shut down the City and found them in four days.  And then except for the trial we forgot about them.  Because they aren't going to define us or that day.  Instead, Bostonians did what we do....we chose our own identity.  We chose to define it our way.  We focused on the victims and those who helped.  And plenty helped.  Of course there were Boston's 1st Responders; Fire, Police, EMT all the dedicated professionals you would guess.  And then there were Bostonians.  Other runners, spectators, people who were nearby.  People who didn't panic, didn't flee (and if you did run, that's ok, it's ok to have a sense of self preservation) but stayed and helped.  And people kept helping in the days and months after.  Raising funds to help those affected deal with their loss and by and large just supporting them.

Joker disposed of Speedbump and thanks to the judicial system, Joker is going away for a long time, or a quick walk to a big electric chair.  Who cares?

Boston meanwhile has instituted #OneBostonDay.
"On this day, we remember and reflect.  We greet our neighbors.  We lend a hand.  We reach out, give back, and go above and beyond.  We epitomize the spirit of the city we love."

We will honor those lost and those grieving.
We won't forget.
 But, like the man said
"It's our fuckin' city!"

Monday, April 06, 2015

Two Posts In One Day???

I can't help it.  I scored and I have to brag somewhere.  Of course, I also proved to myself once again that I am a clown and it has nothing to do with Pomalyst.

First, I had to go to Walmart to get a Dutch Oven.  I want to make a boiled dinner and I don't want to use the stock pot.  It was warm here and I was feeling pretty good, so I decided to walk.  I figured if I got tired, I could take the trolley home.  Or, more likely if I over purchased, I could take the trolley home.  So the trolley that picks up at Walmart arrives every hour on the hour.  Except 7pm.  2pm?  no problem.  5pm?  No problem.  Every hour except 7pm.  Now I have been caught standing at the bus stop before and it was a few months ago, so it was dark.  It's not a HUGE problem, there is cab service in Staunton.  I have the numbers pre-programmed.  But planning would be better, right?

So I walk up, it's two miles.  I didn't particularly rush.  And I was there in about 30 minutes.  Yeah, I am no four minute miler....but's not too bad.

I have a list, Kleenex - not heavy.  Dutch oven - not heavy because I wasn't spending oodles of money on it.  Shower curtain liner - not heavy.  Then I take a turn up the Easter Candy aisle.  So, I have explained my love of Hershey-ettes before in this blog.  Hershey-ettes are better than M&Ms, but harder to get.  M&Ms won the marketing war.  But they are usually around for holidays.  At Easter they are "Bunny Ears" and they are all white.  They are usually with the Reese's Ears that are all orange.  I think they get passed up because people don't get it.  Reese's, thanks to the movie ET are universally recognized.  But you have to be a little *cough* more mature to remember Hershey-ettes as a common candy.  So that's fine with me because I walked up the aisle and literally scored 48 bunny ears of Hershey-ettes at 50% off!!!!!  WooHoo!
So, why am I a clown?  I walked outside at just 6:55pm.  Yeah, 48 Hershey-ette Bunny Ears in my string bag and a two mile walk home.  How?  How did I time this so badly once again???

Life Is Good!

I know I drop off the internet (unless you are on FaceBook or Twitter with me).  Sometimes a blog post is just more than I can contemplate.  Funny thing is, I am still composing them in my head at the same rate I always was.

I am in my fifth or sixth month of Pomalyst.  I'd have to go back and look.  I causes severe mental confusion and agitation.  I know there are times Tommy and Frankie have to tell me to "Ma! Stop! You are upsetting me.".  I take is every night for fourteen nights and then spend the rest of the month coming out of it.  As usual I made all kinds of assumptions based on the first month.  I only make myself crazy.  Of course the symptoms cleared up quickly the first month, I was on the lowest dose possible and there was no build up in my system.  So it takes longer each month to get back to normal.  And they have have doubled  my dose, which is still only half what the average patient takes.  But Thalidomide and I have never been friends - Pomalyst is the latest generation of Thalidomide.  Next was Thalomid, but that was before my adventure started.  Then Revlimid and we all remember what fun I had with that in the summer and fall of 2010!

And now it's Pomalyst.  Which is seventy times more powerful than Revlimid.....I was told by a very proud and happy Dr. Miller.  Pardon me if I am not so enthused.

But it's working according to the wonderful Dr. Miller, so on we go!

I try to start on the 1st of the month and plan everything for the last week of the month.  Sometimes life cooperates.  For the fourteen days I stay with Tommy in Staunton.  Which compared to Craigsville is fabulous.  Seriously, there is a little trolley system that gets me around town.  I am fairly independent, something that drove me crazy in Craigsville.  I can walk to the library, several stores, the post office.  And it's a college town and I like the vibe.

The other 23 hours I sleep.  Haha!  Just kidding, it's not that bad.  But the other day, after being asleep seventeen hours, Tom felt the need to tap on the bedroom door and make sure I answered.  That's why he's my favorite caregiver.  No smothering there!

So what happens the other two weeks?  Well in March I had dinner with my goddaughter Debbie, shopping with my friend Kathy, visited my mother and set up my new storage (I have stuff all over Massachusetts!) in a convenient area.  Saw some other friends and had lots of laughs.  Spent time with my son Frank. of all......two days and one night with my grandson, Frankie, Jr.  He is the most beautiful baby ever.  I could have just sat there gazing at him.  Of course, he is wild like his father, so there was no sitting.  There was hide-n-seek and singing and dancing and playing with trucks and blocks until Grandma Di was almost conked out on the floor.  But when he laughs, everything is worth it.  He's learned to almost say "please".  It comes out "peas" and when I hear it, there is nothing I wouldn't give him.  But like I said he is his father's son and he can be imperious.  I shouldn't laugh, it's gonna get us all in trouble later.  I was cutting a banana and putting two small pieces at a time on his plate.  His mother had mentioned that sometimes he stuffed too much in his mouth and made a gagging sound.  Well, no, I wasn't going to deal with that.  Anyway, at one point I didn't put the new pieces of banana on the plate fast enough and he tapped the plate with one finger like the royalty he knows he his.  And I doubled over laughing.  "Yes, Your Highness!"

So I fit in as many things as I could and scooted back to Staunton by 4pm on the 1st.  You take Pomalyst at night, so I was ok.

My cousin is getting married in May and it is perfectly timed for me - May 30th!  Ha!  The best I will be all month.

I've learned not to pile too much into that time.  I set two things that must be done during my "up time".  Then things that if I get to them, I get to them.  It's much less depressing than when I was trying to cram ten things into those few days.

But overall, life is good.  I know I am better off than zillions of other people.  I am grateful everyday.

Saturday, March 21, 2015

The United States Constitution Means The Freedom To.....

and the freedom NOT to.

Could someone explain to President Obama, who purports to be a Constitutional scholar, that mandatory voting would be unconstitutional.

Never mind pointless and stupid.

Tuesday, February 10, 2015

4 Miles!

I walked four miles today.  I am so psyched!  It's even more exciting since I am in the middle of my 3rd round of Pomalyst.  I started last week and tonight will be the 7th pill of 14.  The first two rounds were 1mg each evening; but this month was doubled to 2 mg.  But some part of me must be getting used to it.  Less shaking, less panic, more energy.  It's still not a cake walk.  There is still insomnia and *cough* intestinal distress.  But I'm grateful for any good news.

Now let's see what this doubling does to my numbers.

Sunday, February 01, 2015

History's "Sons Of Liberty"

To be fair, I have only watched the first of the three part series.  However, based on this first episode I must say....."History"?....not so much.

Very disappointing historical content.

That said, it's well filmed and acted. If it were an outright "drama", I would gave it many stars.

A few years ago " The History Channel" dropped "Channel" from it's name.  I would suggest they dropped the wrong word.

As I said, I have watched the first episode.  I had recorded all three episodes with plans to "binge watch".  But now I have decided to pace myself.  The third episode purports to deal with the Battle of Bunker Hill". Breath in.  Breath out.
 Just for a frame of reference, this is John Singleton Copley's 1772 portrait of Sam Adams.  Not much resemblance.

Friday, January 30, 2015

January 30, 1945 Raid at Cabanatuan

Seventy years ago today LtCol Henry Mucci of the US Army Rangers led a force of Rangers and Alamo Scouts in the largest and most successful rescue of American prisoners of war in American military history.

The Japanese held approximately 500 prisoners of war at Cabanatuan Prisoner Camp in the Philippines toward the end of World War Two.  These prisoners were largely made up of Bataan Death March survivors.  Men barely alive.  Allied/American intelligence knew that as our forces were successfully moving through the Pacific, the Japanese captors were killing POWs.

The rescue force of 133 US Army soldiers was vastly outnumbered.  Not just those Japanese soldiers in and running the camp, but very close by was a Japanese Infantry Battalion with approximately 1,000 soldiers.

So not only did Mucci's men need to get into the camp, overwhelm the 200 or so strong Japanese captors, rescue the POWs and escape; they also had to keep the camp down the road, from sweeping in and re-enforcing the camp guards.  That's where Filipino guerrilla Captains Juan Pajota & Eduardo Joson and their forces came into play.

Pajota and Joson with their force of approximately 270 Filipino soldiers coordinated a roadblock at the Cabu River Bridge.  This attack decimated the Japanese Battalion and took that pressure off of Mucci's forces.  It still wasn't easy, but it gave the Americans a real chance of success.

LtCol Mucci had handpicked Captain Bob Prince to plan the raid.  They had to go 35 miles behind enemy lines and they had to pull it off before Japanese to slaughter the remaining prisoners & deserting the camp ahead of McArthur's arrival on Luzon.  Prince's plan, featuring Army Rangers belly crawling across a large flat, open area right up to the camp landed him in the Army Ranger Hall of Fame!
The result - a great, great success!  This pic is the liberated prisoners.  Mucci & Prince lost only two men in the raid, which is astonishing as well.  I guess for today "BostonMaggie" can say - "Rangers Lead The Way"!

Monday, January 12, 2015

Global Tests - John Kerry Just Failed It

You know I don't believe in this crap, I have the sweatshirt (kinda tattered now) to prove it.

Back when SecState John Kerry ran against "W" in 2004, he made some ridiculous statement about "Global tests" during a debate moderated by Jim Lehrer

LEHRER: New question. Two minutes, Senator Kerry. 
What is your position on the whole concept of preemptive war?
KERRY: The president always has the right, and always has had the right, for preemptive strike. That was a great doctrine throughout the Cold War. And it was always one of the things we argued about with respect to arms control.
No president, though all of American history, has ever ceded, and nor would I, the right to preempt in any way necessary to protect the United States of America. 
But if and when you do it, Jim, you have to do it in a way that passes the test, that passes the global test where your countrymen, your people understand fully why you're doing what you're doing and you can prove to the world that you did it for legitimate reasons.

I went right online and bought one of my favorite items of clothing, evah!!!  It's a sweatshirt of Uncle Sam superimposed over a UN logo pointing & saying "I DON'T DO GLOBAL TESTS".  It's been eleven years, so when people ask I explain it's a belligerent retort to an obscure political statement.

Anyway, if you did believe in them.....the test took place in Paris, France over the weekend.

 Kerry didn't even show up - his grade?


Sunday, January 04, 2015

Who Is Back On Pomalyst?

I'll give you a hint - I am blogging at 0500.

Never mind I have already screwed up.  I was supposed to start December 30th; lounge on the couch for 14 days and be done & have my head clear for my January plans starting January 16th.

I didn't factor in the chaos of the move.  Believe me I am thrilled with the new place...but happy chaos is still enough of a distraction.

So I'm three days late.  And I forgot to take something to pre-empt the digestive upset...strike two!

Pomalyst is taken at night, two hours after you've stopped eating.  Out of the fourteen days, two are also steroid days.  Steroids are best taken early in the day.  I got my burst of energy....but had to waste it looking for some lost paperwork.  Meh, win some, lose some.

But I am bummed, I will lose out on some of my January plans.