How Much Did It Go Up This Month?

Every month lately I have my IgA level tested.  Ever since the cancerous protein came back, signalling the end of my remission, it has been climbing.

Between October '12 and January '13 it went up 41 points.  Between January '14 and March '13 it jumped another 41 points.  Yikes.  At that rate I was going to sail right past the upper level of normal (normal ranges run from 50 or 80 to 350 or 400, depending on the scale).

After March it went up more slowly, but it was going up.  The month I took the curcumin religiously it only went up 2 points.  Since then it's been spotty.

Every month friends and family hold their breath with me - "How much did it go up?"

So I just listened to Karen's voice mail..........it went DOWN!!!  From 319 in August to 310 on Monday.

I hear Nelly singing "Ride Wit Me" in my head "Hey!  Must be the Milky Ways."

Remind Me Never To Use The Restroom At Sears

My Grandmother Washes Her Feet in the Sink of the Bathroom at Sears

BY MOHJA KAHF

My grandmother puts her feet in the sink

        of the bathroom at Sears

to wash them in the ritual washing for prayer,

wudu,

********************************

Yeah, I hear you - "Maggie, what the ...."

Well folks this is the poem that the principal of Concord-Carlisle decided would be an appropriate for a school wide reading on.........September 11, 2013.  Yeah, that Concord.

Did I mention that the kid that was supposed to recite the Pledge of Allegiance wasn't available, so they skipped it?

Oh and also, the representative of the school committee is "disappointed" that people thought that poem was inappropriate.

What's above is just the opening.  Want another sample?

And if you Americans knew anything

about civilization and cleanliness,

you'd make wider washbins, anyway

My grandmother knows one culture—the right one,

****************************************

Pissah.

Got To Sit Outside Today!!!

Yay me!

I've been spending a lot of time indoors in the new place in Craigsville.  Mostly because I sleep more than you can imagine.  Also because there are so many cleaning projects in this place, it's been closed up for three years.  But also because of the heat here.

It's not like it doesn't get beastly hot in Boston.  But when it does I go to the beach or the Clougherty pool at the top of Bunker Hill.  I love to lounge in the sun.  My Marine refers to me as a housecat because I love it so much.

But there is no water element nearby.  And no dependable public transit to reach the nearest public pool......21 miles away!  The hose doesn't even reach around to the back of the house, lol.

But today at noon it was 69 degrees!  Whew.  I was getting pretty pale.

The outdoor space here is pretty sad, just like the inside was when we moved in.  But it has great possibilities.  This is a view of the back of the house.  There is a small well built deck that we need to refinish.  As you can see, I also need a screen door.  But the magic screen is batter than nothing.  The insects here are very serious.

This is a view from the deck going up.  The yard goes up this hill and over.  Lot's of space.  Lot's of privacy.

And this is a partial view of the bleak front yard. 

  But I can't do anything outside until I finish inside.  I know once I start trimming bushes, planting bulbs, carving paths......I won't go back inside!

Today Is Important

For many reasons.  But today let us turn our attention to Benghazi.  We need answers.

Battle of Lake Erie

"We have met the enemy and they are ours" - Oliver Hazard Perry's famous message to General Harrison after the American victory at the Battle of Lake Erie, 200 years ago today. 

Battle of Lake Erie: Building the Fleet in the Wilderness

My Dear Stella

My fun on FaceBook has irritated my friend Stella.  I have "shared" every derisive post on the fact that some party line hacks in the Democratic party who howled over "W" and Iraq are now backing intervention in Syria.  I have repeated every petty, pithy comment on their hypocrisy.

You can't be surprised.  Everyone knows that my most finely attuned sense is my sense of schadenfreude!

But I am well aware that not all liberals back military intervention in Syria.  I know that not all Democrats blindly follow President Obama.  I know that the Americans who voted for Barack Obama are not a monolith unquestioningly following his lead.

Mathematically that would be impossible.  50% of voters chose to re-elect Obama over 48% backing Romney.  Yet Real Clear Polling averages 51.3% oppose intervention on Syria's civil war with only 34% favoring it.  And I have heard numbers putting that support as low as 19%.  Politician after politician talks about calls and emails coming into his/her office against intervention.  I've heard no one discuss a flood of calls in favor.  I think that is even more telling because those people made an effort as opposed to just answering the phone.

I understand that my stand on Syria puts me in bed with MoveOn.org and Code Pink.

I further understand that John Boehner the nominally Republican Speaker of the House, backs the President here.  But Boehner's actions don't move me.  He's a boob.  He's not a true republican or a true conservative.  And ack, the crying!  Don't get me started.  Boehner is a non-entity in this discussion.

Facebook is for fun and snark.  Please scroll through my timeline.  A pic I shared last night jokes about Pope Francis, who I respect and admire, being a bad catholic for sitting in the back at Mass.

You know I loathe John Kerry to the point that seeing his visage gives me agita.  You know I am disgusted that Obama talked smack about "W" and Iraq for years.  But now that he is sitting in the hot seat, things are different.  Yet, he still takes the occasional pot shot at "W".  Have you heard anything from "W" in terms of a counter volley?  No.

So when we make vicious fun of those involved here, that's what it's about.  Never, never about you.

Can I Umm, Get Me A Red Line Here?*

"Children of Darfur"

Sudan: Letter to Human Rights Council on the Human Rights Situation in Sudan

"Two years after the secession of South Sudan, armed conflict continues to devastate large parts of Darfur, Southern Kordofan, and Blue Nile. "
******************************************************

Darfur in 2013 Sounds Awfully Familiar

Nicholas Kristoff reporting for the New York Times

ABGADAM REFUGEE CAMP, Chad — ASIYA TAHIR, 20, had her 4-month-old baby, Mariam, on her back in April when three armed men in Sudanese military uniforms seized her and her sister at a well in Darfur.

The soldiers beat Asiya and then — according to both sisters who were interviewed separately — pulled Mariam off her back and laughingly checked to see if she was a boy or a girl. Grabbing Mariam by one arm, a soldier flung her into the distance.

“You’re lucky she’s a girl,” Asiya remembers one of the soldiers saying. “If that were a boy, we would have cut his throat.”

**********************************

Not that I would expect our SecState to be much help on Darfur.  After all, when we had Khartoum at the negotiating table in 2010, Kerry was the one who brought that Administration's offer to "decouple" the issue of Darfur from the talks.

The UN estimates that as many as 300,000 have died in Darfur.  No they weren't gassed, just shot, displaced, starved and left in camps to die from preventable disease.

**************************************

The asterisk in the blog post title is to explain the poor grammar.  I am jeeringly using some of John Kerry's own words.

Mismanaging Syria

All war is ugly.

Chemical weapons are a crime against humanity.

However, President Obama has mismanaged this situation and is on the way to making it worse.

I just watched CNN's State of the Union - as well as Kerry on "Meet The Press".  Later, I will catch a repeat of FoxNewsSunday.

But so far several things really bother me.

First is SecState Kerry and others such as Rep Eliot Engel, D-NY trying to drive support by talking about Syrian children who have been gassed.  Do not try to manipulate me this way.  I care about those children, but no more or less than the children Assad has killed with bullets and bombs.  I also care about those who have been orphaned and displaced.  How about the children killed by rebel forces?  Don't tell me the answer is to bomb and kill more Syrian children.

Oh and when Kerry makes his passionate statements in front of this picture

Just know it's a lie.  This isn't a depiction of the aftermath of a Syrian chemical weapon attack.  It's not the result of anything Assad has ever done.  It's Marco Di Lauro's "The Aftermath of Saddam" in 2003.

Then there is the "we must back Obama now that he has committed" argument.  I find this best exemplified by former diplomat and current JFK School professor R. Nicholas Burns (a guy who I have agreed with on some things in the past).

"The congress has to vote in favor of this resolution or else the credibility of the United States as a global power in the Middle East is going to be vastly reduced."

Yeah, no.  Saying Congress must blindly follow whatever nonsense and poor foreign policy POTUS comes up with is bullshit.

And when some talking head tells you that it's a crime against humanity - and it is - so the US must handle it.  Remind them that's what the UN and other world bodies are for.  If this was sooooo important, where was Obama's Ambassador to the United Nations when it was brought up?  Oh, yeah, Samantha Power was vacationing in Ireland.

Well then, they'll say it's a US national interest.  Really?  Please define it.  Syria can gas every last Syrian and it will not effect the US as a nation.  So absent a vital national security interest, the answer is in Article I, Section 8, Clause 11 of the US Constitution.  One would think someone who has referred to himself as a "constitutional law professor at the University of Chicago Law School" would understand that.

Meet The Press had a segment on the horrors of refugee camps.  I've never seen a nice one and the UN says this is a huge crisis.  OK, I'm with you there.  I want to help there.  No one is going to argue that.  Send aid.  We're good at that.  But don't blow smoke and tell me that bombing strategic targets in Syria is going to make any difference in refugee camps.  These camps were there before the chemical attacks.  Syrians are fleeing the fighting overall.

Finally, people will tell you President Obama "wants to send a message".  Ok, I understand "gunboat diplomacy". Currently we have USS Gravely DDG107, USS Barry DDG52, USS Mahan DDG72, USS Ramage DDG61, and USS San Antonio LPD-17 in the Med.  USS Stout DDG55 is heading over to relieve the Barry.  So tell me, if DDGs deliver Tomahawks and LPD deliver US Marines.......what is your message?

Ten Years Ago I......

.....landed in Dubai.  The U.S. Navy Commander, formerly known as the Favorite Naval Consort may have turned out to be a selfish jerk who got "tired of my cancer", but too many other things were wonderful.

The pool; the gym; the spa and the staff at the Taj Palace took marvelous care of me during my eleven days in Apartment 245.  And thanks to the Navy phone (mine didn't work internationally) he gave me from his office and the use of his car and driver, Ali, it was the best vacation ever!

I have a pic of the two of us, but I can't find it.  Ali coached me on bargaining in the souks.

That's where I got these little treasure chests filled with frankincense.

The Long Dark Winter..........

....of my lack of good reliable Internet connectivity is over.

No more looking for unlocked networks.

No more driving near a McDonalds just to update my Kindle.

Thank you, Sara.  I know it was a sacrifice.  My son is as much of an addict as I am.

Signal strength: Excellent.  Mmmmmmm.

We've Made A Move

Is it for long?  I dunno.

We've been in a temp place in Harrisonburg since the beginning of June.  And our "Find-An-Effin-House" deadline was looming August 1st.  Sara, Tom's gf finally came up with something that met every requirement but one.  My request to be near some kind of public transit.

On the other hand, it has reduced Tom's commute to an hour....if he walks.

I am moving to Craigsville.  The correctional facility where Tom is an officer is less than four miles.

I know I make lots of jokes about how there's "Nothin west-a-Worcester" but this place is the back of beyond as Mama Kelley used to say.  The town has about a thousand residents within it's 2 square miles and borders the George Washington National Forest.  Charlestown is half the size at one green mile and 16 times more people.

Sara said something last night about burying mothballs near the house to keep away snakes, but "la-la-la" I didn't hear that.

It's twenty miles from Staunton and I don't know if I can hack it.  Although, no light pollution!  The stars at night are big and bright in Craigsville as well as Texas.

So, I'll give it a shot.  I may end up with a pied-a-terre in Staunton.

But it's better than an empty FridgidAire box.

Part Two; Trying To Put The Milky Ways Down

Ok, I've recharged the batteries a little.

In the aftermath of admitting to myself that my cancer was back, I did every wrong thing.  I stopped going to the gym.  I slept more.  I subsisted on frozen Milky Ways.

But mostly, I thought about what I would do when Dr. Miller got tired of "waiting and watching".  A second transplant seems a ridiculous idea.  The general consensus as far as I know, is that subsequent transplants get you half what an initial transplant does.  If you are an IgG patient who gets twenty years, certainly a second one giving you ten years seems worth the effort.  But for me, going through six months of chemo, one month of heavy chemo, three weeks for the transplant, one hundred days without a salad, and six to eight months recovery (bald no less) to get half of twenty three months........yeah....no.

So that leaves drug therapy.  Revlimid, velcade and a host of other drugs are out there to help suppress my numbers.  And for the majority of all myeloma patients drug therapy tends to have a very low impact on their quality of life.  Unfortunately, that is not the case with me.  So, I am not looking forward to that.

Now there are some other things that pop up in my email group.  The most frequently mentioned alternative to chemicals is the herbal supplement curcumin also known as tumeric.  There are no real, documented, long term studies.  But there is tons of anecdotal evidence.  In particular there is a blog "Margaret's Corner" which deals pretty much exclusively with Margaret's battle against her disease using this herb.

I've done some reading on and off about curcumin and now I did some more.  What I finally settled on was 1800mg of curcumin with biopeperine (black pepper to help absorption) along with 1000mg of flax seed oil in the morning and again in the evening.  I called Karen my nurse practitioner and let her in on the plan.

At my May appointment, with six weeks of this regimen under my belt, there was another blood test. Karen was laughing when she called with my results.  "I don't know if it's the tumeric, but your result was 264."

2 points!!  I don't know what it was either, but I will take 2 over 41 any day.  They also did a full skeletal survey, which is a series of head to toe X-rays.  There was no new damage.  Whew!  And the pain in my upper arm is not a tumor, it's something muscular.

I called my sons and told them the results which could mean nothing or everything.  That's when this whole move to Virginia came together.  I have talked about it for a while, but I always talked about it as something that I would do....and never got to.  But Tom and Frank made their case for having me there and spending this time waiting for treatment with them.

I gave notice on my beautiful waterfront place in Hull and packed.  I went to my parents and told them all that had been happening and why I was leaving Boston.  I asked them to keep it to themselves.  I told very few people.  Its' so hard to tell people.  I feel so guilty.  It is the fastest way to wreck someone's day.  Why make everyone miserable?

But I'm better now.  I lifted the gag order.  I called my cousin Kathy.  I wanted to make sure she knew directly from me.  She found out about my original diagnosis from the internet and that wasn't fair.  I have left messages for my cousin Martine, she better return my call if she wants direct info, lol.

My next test is in a few weeks.  We'll see if my 2 points were a fluke or a pattern.  It would be nice if curcumin could slow my cancer's growth because it has no side effects.  Well as long as I remember to have something in my stomach.  Trust me, curcumin burps are hell.

All Good Things Must Come To An End.....

That's what they say, isn't it?

My cancer, which was successfully knocked out with my February, 2011 stem cell transplant, is back.

Stop!  It's bad, but not hugely bad.  I will explain.

In Multiple Myeloma a patient has an overabundance of a corrupt protein.  Mine is the IgA.  Most MMers have a corrupt IgG, but 20% have IgA.  An even more rare occurrence is a problem with the IgM, IgD and I think there are others......but they don't pertain to me and it is a Maggie-centric universe, so we move on.

The point of chemo for us it to knock the corrupt protein down and keep it down.  Some patients stop there.    The SCT (stem cell transplant) people go further.  A successful SCT can work to the point where the cancerous protein can't even be seen.  This is described as a "complete remission" or CR.  That was the case with me.  After my SCT, which has been described as being brought to deaths door and then being snatched back,  my cancer could not be seen.  I was in CR.

I was told that one general rule was that if an IgA patient makes it to the two year mark, they will make it to five.  The IgG people tend to get 10/15/20 year remissions.  For the first year or so, I decided not to think about that.  After a very unsuccessful first go around with chemo and the very bitter disappointment of failure, I decided that I would set all expectations low.  But as the twenty four month mark approached I began to get excited.  At first, I was quiet about it.  I kept it to myself.  But then I began to mention it to close friends.  I remember the smile on my face when I revealed my hopes to My Marine and he said "I know, I remember, I'm waiting too."  LOL!  Nothing gets by him.

As February, 2013 approached and my hopes grew I went to my January, 2013 appointment with Karen and Dr. Miller.  I was being tested every three months.  It was during that appointment that Dr. Miller said that they could see a protein and he wanted me to start coming in every other month.

Buuuuttttttt.......I didn't want to hear that.  Soooooo.......I didn't.

This is not the first time I have completely and successfully blocked bad news.  When my older son Tom was born, we were told he had a heart murmur and it would need to be watched.  And apparently it was remarked on during pediatrician visits for the first thirty months.  But when I was told in the early spring of 1984 that he would need an operation to fix it, I was completely blindsided.  I swore it was a shock.  Tom's father my ex was flabbergasted.

So when February 10th rolled around, I celebrated it!  I had a celebratory lunch with my parents.  I was all smiles.

Because I have mad blocking skillz!!

Then I went to the March appointment where Dr. Miller assured me that while my cancer was back and my levels were rising......we would hold off on treatment.  We would wait and see.

I nodded and smiled.......inside my head I am screaming "WTF????  What is he talking about?  I made two years!  I am going to get five.  He said he saw "A" protein, not "MY" protein!"

But after a few days, I pulled my head out of my ass and called for some numbers.  In the three months between October, 2012 and January, 2013, my cancer reappeared and my IgA level increased by 41 points.  In the two months between January, 2013 and March 2013 the IgA level again increased by 41 points.  However, these increases only brought me to 262 and normal levels are 50 to 350, so technically speaking, I was not out of remission.  But realistically speaking, at that clip, I would sail right out of remission shortly.

Ok, I am going to stop here for now.  I am tired.  When I am being honest, I will admit that my fatigue levels are indeed rising.  But I will come back for Part 2- "What I Am Doing About This".  Or some such.

Stumbling Upon A Great Group - Warrior Hike

A few days ago on Facebook my dear friend, ConcreteBob posted that he was going to be in Front Royal, Virginia on Friday night.  I thought surprising him would be fun.  After all, we are in Harrisonburg, Virginia for the next month and it's close by.

I asked Tommy to put me on the calendar for the 21st.  "Is this one of those things where you walk into the room and people yell "BostonMaggie" and you smile beneficently?" he asked.

Why yes..........yes it is.

LOL!  I didn't know why Bob, he of the famous homemade BBQ sauce, was going to be there, but, whatever.  His post mentioned the Front Royal VFW.  So it's something I can crash, I'll stand a round, buy raffle tickets, whatever.

But I didn't know a time.  And I didn't know how to find a time without tipping my hand.  There was nothing on the Col Samuel R Millar, VFW Post 1860 web page or Facebook page.

Soooooooo, I emailed a perfect stranger and asked.  I got lucky.  No one had warned her about me, so she clued me in.  A potluck dinner.....crap.  I am here with a wok and paper plates.  What am I going to bring.  Cookies from the supermarket would have to suffice.

When we arrived everyone was back in a covered picnic area.  I kept my head down and walked up to ConcreteBob's table.  "Hi, I'm here from Women For Obama and I'd like to talk to you."  He was so confused.  Then he jumped up and hugged me fiercely!

After many hugs and laughs, Bob sat me down with Sean Gobin to explain why we were there.  Warrior Hike 2013 started in Georgia in March and they were headed up the Appalachian Trail.  Every five or six days they come off the trail and meet up with veteran and community organizations.  Tonight was the Front Royal stop.

From their "About" page;
In 2011, while deployed to Afghanistan, Marine Corps Captains Mark Silvers and Sean Gobin founded a nonprofit called Warrior Hike and in 2012 hiked all 2185 miles of the Appalachian Trail to raise donations for wounded veterans.
During their journey, Mark and Sean organized 35 fund-raisers at veterans organizations that were located along the Appalachian Trial.
At the completion of their hike, Mark and Sean had raised $50,000 in donations to purchase adapted vehicles for seriously wounded veterans from the war in Afghanistan.
Recognizing the physical, psychological, and spiritual benefits of hiking the Appalachian Trail, Warrior Hike has partnered with the Appalachian Trail Conservancy to create the Walk Off The War Program. The Walk Off The War Program is designed to support combat veterans transitioning from military service by thru hiking the Appalachian Trail.

There is more on their website plus pictures (you should click the link, they're cuties).

Like them on FaceBook!  Follow them on Twitter.  Spread the word and help out any way you can.

It was a win/win for me.  I got to see Bob and surprise him.  Then Mr. & Mrs. Sniper showed up.  You can really spend the whole night laughing when they show up at a party.  One of the guys had a phone/tablet?  A Phablet?  Holy crap, Sniper was off and running with that one.  Plus I found a great group to follow on Twitter.

I'm going to try and hit them at another stop to show my support and I can do more than shop for cookies in the supermarket.

Big Changes

I have moved to Virginia.

For a while.

It's been the plan for a while.

I loved this last five months in Hull.  I wanted to stay until at least the fall.  But things happen and I am here in Staunton now.

I will go back often.  My parents are there.  I am not leaving Doctor Miller and my wonderful medical team who have seen me through this far.

I will be very lonely here in the land where no one understands me when I speak........

Who We Remember On Memorial Day

ScottTheBadger mentioned his Dad's cousin Lt. Francis Albert Riley, USN.  Lt Riley was aboard USS Albacore SS-218 when she was presumed to have struck a mine on 7 November 1944 near Hokkaido.  All hands were lost.  I got the picture from "On Eternal Patrol", a website dedicated to all men lost while serving in the U.S. submarine force.

I will be remembering my grandfather's brother PVT Dan Kelley, USMCR.  Dan enlisted one week before his 18th birthday; became active duty within 3 weeks and was KIA at IWO Jima a mere 9 months later.

When you eat your hot dog or shop that car sale today, remember you are free to do so because men and women like Scott's cousin and my uncle paid the ultimate price.

Separated At Birth

An English Defence League supporter takes part in a march in Newcastle on Saturday. Photograph: Jonathan Pow/PA

 Sloth from "Goonies"

Memorial Day is......

Memorial Day is........

.....this coming Monday, May 27th b/c it occurs annually on the final Monday of May.

....a day of remembering the men and women who died while serving in the United States Armed Forces.

....a day formerly known as Decoration Day. Decoration Day originated after the American Civil War to commemorate the Union and Confederate soldiers who died in the Civil War. 

.....NOT to be confused with Veterans Day which occurs on November 11th of each year.

.....NOT a sale at Macy's or a car dealership or an appliance store.

My Awesome Goddaughter!

Mother's Day was awesome.  Giving and getting gifts, flowers, chocolates.  My mother made her famous potato salad.

Although getting there was kind of like crossing the country in a Conestoga wagon!  I love Hull, but convenient it is not.  No shuttle on Sundays till after Memorial Day (although Frank's Britt took care of that part); on and off the 220 to pick up last minute things - yeah, last minute, I said it; and the Red Line under construction.....whew!  Then again, it's not like I had anything else to do except get up to my Mum's house.

I've been trying to weed through my stuff and contain my spa/facial/cosmetic/body lotion addiction - no support groups for that.  It's slow going and a few days ago I thought "Deb will give me something new for Mother's Day, I should call & stop her".  My goddaughter Debbie shops in Bath & Body Works or Victoria Secret, which I have heard is even more expensive than Bath & Body Works.

I thought I should ask for some chocolate chip cookies, which are no better for me.....but cost less and never sit around waiting for the next purge.

But I forgot.

Still.......I opened my gift bag and it contained.........brownies!  Pretty good considering we were communicating on a psychic connection.

We all had a chuckle about that.

My Kindle

I went from -

"I like books.  I like holding them.  I like the way they feel.  I like the way they smell.  I like wandering around book shops.  Especially the Brattle."  

To -

"It's used.  It's short money with this coupon on top of it.  What's the harm?"

And then yesterday when the screen froze -

"Oh my God!  All my zombie books! All my foreign policy books!  This magazine is weighing down my bag!"

All in just one short year, give or take a few days.

Amazon had a helpful page and my Kindle is back.  Whew!