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!