Things I Remember (a cancer survivor's memories)

I'm not going to put these in any special order, but I've been told that this little "exercise" is a good thing to "get out there".....

So...

I remember this one name from childhood: Ziglinda Cambell. She was one of my sister's friends, but I was always impressed that someone had been named that. Ziglinda. We called her "Ziggy". I believe she was staying over the night Dad caught a skunk in the shed...and I hadn't realized how the storm windows worked before that night. The fact that you could open the storms (by taking out the lower "catch" and putting the window out on a hinge), even in the middle of the night, and breathe in fresh air was a blessing....and having Ziggy there to joke with was really fun.

I remember singing along with Pepere's radio in the barn while "helping" him. It was turned to a French station, so even though I didn't understand the words, I was trying my best, sometimes drowning out the radio. Pepere would sometimes correct my words, but always seemed to be smiling as he went past.

I had a best friend in fifth grade before her family moved away. Her name was Sarah Bates, and her mom had rented the old schoolhouse that was just the other side of the auction barn's field. She had an Arabian stallion that I fell in love with in the barn (which was behind our house) - and he got out when Princess was in heat, getting her pregnant. Suffice to say, that broke the lease, and Sarah moved, but only after giving a dog to one of the new neighbors from just up the road. (Princess had a filly that the Bradburys named "Misty"....and she was as "full of bull" as her dad had been. But more about her later.)

This was from when I was really little, but we had a babysitter on Christmas Eve. She sat and sang to us before putting us to bed, and her voice, though a little rough, made the songs sound beautiful. I've never really thought of it before now, but it was either my cousin, Becky, or the neighbors eldest daughter, Beverly.....but that was so long ago, I don't firmly remember who the singer was.

On the same line as who was singing, I remember Bev trying to teach us how to ride a horse. She would bring Princess to the wooden barricade that made up the fence, hoist one of us up there onto Princess's back, and either walk along or tell us "You can do this". I was at being able to jump a tree on the way back to the barricade before Bev left, but I didn't try to get up onto Princess again once she was gone. Princess, however, was used to us kids and would come up to us when she was moved to the pasture next to the auction barn. (We could get there through the trees most of the time to visit without having to go out on the road.)

Misty was both the bane of my existence and my life line. She was Arabian enough to make plenty of work for Albert, but her Thoroughbred mother made her pliable, as well. She had a habit of racing at whoever called her, weaving off at the last second to make a second pass or coming to a stop right within your arms, should you be as I was - and she would continue to race toward you if you made the mistake of running away from her. My second-youngest sister found this out the hard way, as she came out to the field to tell me it was supper time when Misty was feeling feisty. Misty, although not called, raced toward Diane. Diane screamed and raced for the edge of the field. She got under the electric fence just before Misty, who passed by close enough that Diane felt the breeze. She hated Misty after that, as Misty came right to me and walked calmly beside me as I made my way to the same place in the fence that Diane had used.
When Albert started to get rid of the horses, Misty was trouble. He'd get close to her, but she didn't trust him enough to let him catch her. After several hours of trying to catch her, he came up to have my mom send me out, having seen me walking with her many times with nothing holding her to my side. When I got to the field, Tammy Haskell was standing there with her dad, having purchased my sidekick. After telling her that they had named her Misty, the same as her pony, Tammy gave me a brilliant smile.
"I'm going to call her Angel."
I smiled before accepting the lead rope to see if I could collect her new horse, moving toward Misty with both acceptance, as I'd been in the same grade with Tammy since second grade (when our schools consolidated), but with a sadness as well, as I wouldn't be able to visit any more. I'm told that everyone gasped when I whistled, then stood stock still until Misty was within my arms for a hug. As I put her onto the lead rope and started leading her back to the group (which included my mom, who wanted to see if I was successful), I was telling her that she would have to answer to Angel, as Tammy had another horse named Misty. She seemed to agree with that, nodding her head. By the time I was handing the lead to Tammy, who wanted to know how I knew not to run, the newly named "Angel" was ready to make a new friend. We talked for a few minutes about her "bad girl things" (like running directly to you), and then with a "be good", we parted.
Since Tammy passed away this year (after her husband and before her husband's brother, who had also been a 1979 graduate), I'm wondering who has Angel, as she was born when I was about 12 and would probably still be alive. I'm also wondering, if she started to run toward me, if I have the nerve to let her race up to me for a hug.....

My dad smoked for years and years, and then there came the year that he bet my mom that he could stop smoking if she'd go on a diet. The bet was on, and Dad proved that he meant to stop smoking cold turkey by making a mess in Mom's kitchen by cutting up all the cigarettes he had in the house and "playing with the ingredients". He spent a lot of time cleaning up his mess, but when I was smoking, I used his plan (with a lot of newspapers) to do my own "cold turkey".
It takes at least a pack and a lot of newspapers, but it works. One simply takes the pack, cuts the outer liner off and throws out the liner and the filter, and gathers the tobacco in one space. When all the cigarettes are cut out of their liners, one "plays" with the , noting how quickly the fingers, and then the whole hand, is overwhelmed. One thinks "this is what it's doing inside"....and then, when the tobacco is spent and the newspaper is thrown away, one tries to get the tar off....which usually takes several soakings with something with some "heft" to it, like Lava soap.
And it works.....
By the way, Mom stopped drinking Pepsi and watching what she ate and also benefited. Jack LaLanne was a daily visitor, and now that she's in her 80's, she walks around her city with a friend, still benefiting.

While I'm talking about when I smoked, I often wonder what happened to Kimball Blake, he who came in one evening (he being the roommate of my sister and her boyfriend at the time) and started telling what it looked like when cruising from Orlando to St. Cloud on a motorcycle and "interrupting" the love bugs that were trying to get happy. His description was effective, as he got my sister's meal as well as his own. I've often wondered how he was doing, because it seemed he could eat anything at any time...even in the eight weeks I knew him.
(Oh perhaps I don't want to hear from him. My hubby used to eat three alarm chili once, and we only eat "the mild stuff" these days because he has heart burn......lol)

Since it's the season where we collect together as family, I have to bring up the kid that they swore was my "twin", my cousin, Tim. He was three weeks younger than me, but he seemed to have all the neat ideas to get us in trouble. If there was trouble at the farm, guaranteed that Tim and I were at the base of the idea. Oh, the things we got into trouble FOR! (Tim passed away in September of 1981, and the family gatherings have gone the way of the winds, but I still miss him at this time of year.)

Sometime before Pepere and Memere sold the farm, we were gathered at their house for Christmas. It was tradition that Uncle Dick, who sang in "the key of L" - because it sounded like "L" to anyone else - to lead us in Christmas Songs while the ladies did the dishes, allowing the ladies the time to get settled before we started opening presents. It was the 70's. Three Dog Night had been singing "Jeremiah Was A Bullfrog" on the radio for several months. It was passed kid to kid to go into this version whenever Uncle Dick called for "Joy to the World"....
You should have seen his face when all of us started singing "Jeremiah was a bullfrog" instead of the ages-old "Joy to the World".

(And as I've been digging this up for a week now, I'm going to publish this and continue adding to it, as I have the memories, not the time to record them all at one time. This entry is November 28, 2017.)

(11/28/17: Another entry)

Not being "wealthy", we took money whenever we could. My first "job" was (I think) Lucy Cossar and her peas. She had a son who put the peas out into the field the year I was 10 and she had talked my dad into enlisting help from among his children. The oldest of us was 14/15 and had babysitting jobs. The next was 13/14 and having seizures...so that made me the candidate to go talk to her. I made 10 cents for every bushel that I brought her and she and her son would take them out of the pods while they watched tv.
This was also how I got my work ethic, as I wanted to quit halfway into the season and Dad reminded me that if I quit, Mrs. Cossar would be very upset with me, because that would mean that SHE had to go out and finish the job...
I stayed and finished the job. With very few exceptions, I've stayed until I had a new job.

(12/5/17)

With the holidays upon us, I get very nostalgic about the period between Thanksgiving and Christmas. It seems that everything for that period is tied up and presented with a bow for vivid remembrances...

Like the time that Tim and I were having a discussion about Tolkien, both "The Hobbit" and "The Lord of the Rings", and were "outed by another cousin" for "kissing"...and we had to continue on with the discussion in front of a couple of grown-ups for a while to prove that was all we were doing. (I think the grown-ups went away with a whole new way of looking at our books that we were reading "on our own"....lol)

Like the time that we were taking turns seeing who could get away with getting a treat from Memere's special treat jar (made of glass) on the television set before Uncle Dick was sent in to make us "behave" by singing that first Christmas. I wasn't tall enough to take a chance that time, but I would sneak a treat when it was summer and the "ladies" (Mom and any aunts who were visiting) were outside on the porch. Just wait for someone to laugh and make the move....
and I would lay awake at night wondering (1) if anyone had heard anything and (2) if Memere ever counted the treats to know someone was stealing a few. (I would pray to God, go in and visit the Priest - and actually "fessed up" at their new house while passing my new son among the ladies. They laughed.)

Like going up through the barn via the "tunnel"....a ladder that went all the way to the top of the barn and allowed one to go to the back of the barn or the front of the barn in a small space below the beams. In the front of the barn was a section where the bails gave out that was lightly lit by the sun were we would gather to tell ghost stories. We would hear someone calling, answer that "We're coming" and dash back out the small space. We would always catch ourselves before tumbling down the ladder....

Like the times that I was working retail somewhere and wandering around silently "dissing" the Christmas music by substituting other words for those being piped in. For some reason, I'll be wandering around with a weird smile.....

(12/12/17)

I like wandering through the stores looking at things, trying things on, etc. - but not buying anything. Usually, this is when I've bought everything I'm going to, but I just like to get out and DO something. Try explaining that concept to someone whose main goal is to get you to BUY SOMETHING! (It's especially good at this time of year, when you going to the door WITH NOTHING IN YOUR BASKET!) Good thing to do at the Mall, where one can snack out while "mystery shopping".....but don't do it at your local Shaw's or Hannaford. They recognize you there....(spoken from many years of doing this very thing....lol)

(12/17/17)

A family memory shared on Facebook made me think of this:

My Memere and an aunt that lived "a hop, a skip and a jump" apart from each other were sisters. Their husbands were brothers. They had all moved to Exeter, Maine from Ste. Claire, Canada at various points, so my grand-pepere and my grand-memere are in the same cemetery with my memere and pepere - all on one stone. (We used to bring flowers on Memorial Day and understood that, if one picked up the phone to a woman's voice saying "Matin" - or "Morning", it was for Mom.)
When Dad was diagnosed with non-hodgkin's lymphoma in February 1979 and Mom & I went down the wrong road and bashed our car by coming out of a skid and landing on the front wheel (which, effectively, made our car barely driveable), Pepere came to help me out by driving behind me to the dealership (so they could assess the car) and drive me home in his pick-up. He let me know that I was to quit school, get a job, and make sure that my mother was taken care of. I had only months left before I would graduate.....and I had "other plans" that this would "interrupt"....but I was the "oldest one at the house" and I would have to "do as [he] had to - buck up and take care of [his] brothers and sisters".
Needless to say, Dad found out about it - and threatened to "break [my] legs" should I consider it...
I keep going back to the Find A Grave and visiting both Memere and Pepere - Raoul and Marie Anne Laflamme - and my great-grandfather and mother, Alfred and Marie Louise. Alfred, as Pepere stated,
died when Pepere was 18. His mother, Marie Louise, died 8 years later - and Raoul didn't marry until two years after that, a third cousin. (In other words, Memere was a Fournier, the daughter of a Laflamme, who was a cousin to Pepere's kin. Yeah, it's one of "those marriages", so I can claim "canadian redneck" as part of my heritage....lol)
But I never skipped a day of school between February and June, when I graduated....


 

Halloween and other things I look for in October

My grandmother died on October 31, 1967 sometime after my family visited. I was only 6 years old, but my last memory of my grandmother's face as she wished us all a Happy Halloween on our way out sticks with me. Perhaps that's why I decorate so fiercely - in memory of Grammy Dow.

But as time has gone on, I've got more and more in October.

First was my husband's birthday on October 18th.  I didn't know him initially, but when we met, I have always tried to do something special. This year, I took him out to Margarita Grill (http://margaritagrillnh.com/) and, as we talked about how long it's been, we realized that it will be 35 years since he worked there as a cook when we got married. (It was Papa Mike's when we first got together, then the Robers bought it in 1983. We got married that July. Bud Selmi owns it now.)

We may have to go there for our next anniversary.

As time has gone on and my son got together with a lovely lady who has two kids, both born in October, we've decided that October is Birthday Month. (Dylan was born the 15th and Lacie was born October 23.) They were just here to claim their birthday presents as well as three Halloween treats (as their younger sister, Xyla, was born in July) and I had the pleasure of "introducing" Dylan to someone I made friends with via an old friend. He wrote a book called "Flying Pigs & Dinosaurs & Things You Haven't Seen Before" and sent it to me about mid-September - signed by the author. Dylan had fun reading a few poems. (Lacie got a puppet - the kind that you see in India - as she's a little older and can maybe figure out all the strings and how to make him walk and talk. Maybe he'll give her something to do other than try to figure out how to get out of the house....lol)

Happy Halloween (or Samhain), and may all good things come your way.

The Last Week of Chemo.....and an interesting concept....

I haven't really taken to blogging every day. There's so much else to do to entertain oneself when faced with a 14-month "extended vacation".

There was the month in the hospital while they got some of the cancer, but missed it all the first time, held me there while they readjusted, and got the cancer the second time.

There was the month for me to "recover" from that, rebuild my vocabulary (at least, the written word with some semblance of the vocal), and sleep a lot in preparation for them to use radiation on my skull.

There was the month of radiation in which I got to practice my transcendental meditation as they filled my system with a nuclear holocaust designed to negate the growth of any further cancer cells.

And then we started chemotherapy, in which I willingly take drugs that could as easily cause my death as well as cure me. There was a stutter at the beginning, when they tried to increase my medications faster than my body wanted to handle it (as documented in an earlier post), but this week is the final week. This is the one thing I've been waiting for.

And it starts on Monday, September 11 - the final dosing with the Temodar.

As a writer, I've decided to come into this post every day to leave my comments, good or bad. This is, as my oncologist stated, a milestone in my life. At the end of this week, I can adjust to the fact that, with the exception of the neurologist whom I'll have to see for the rest of my life, I'm a "cancer survivor"....

And this is the last week of Chemo......


SUNDAY - SEPTEMBER 10

As I've prepared for this one, I've noticed all the "little things" I've been doing without - not because the market sells them and I can't get them, but because the market doesn't sell them. They are:

Tiger Milk Bars (since the store that was selling them STOPPED selling them) - which was, early on, one of the few things I could eat throughout the chemo. It's worse without my Tiger's Milk.

Guldens Honey Mustard, which is "advertised" on Walmart.com, but ISN'T available on any shelves in Maine. Red hot dogs just aren't the same without it.

Sherrilyn Kenyon's books that I DON'T already have. (Okay, this is just a "don't have the money for it", but some of the bigger books that the author puts out don't reach my favorite bookstores for QUITE a while.....but I think it has more with the popularity of the author.) I was reading "Styxx" when I went into the hospital and had finished it before the second surgery, so I started it again. My "favorite bookstore" is in the Undercover Flea Market, but they don't seem to have it yet.

Stephen King - same deal. (If I counted the number of times I went in for a "Mr. Mercedes" and walked back out bookless.)

Of course, delving into the bookstores happens very seldom, but.....

*hinting to a few people I know out there*

MONDAY - SEPTEMBER 11

All went well - until 11:30 p.m.  That's when the "vomiting bandit" came to call. Luckily, I had taken my last pills at 9-ish, so it was just some bile, but.....

I will be SO glad when this is done so that I don't wake with that "You've got to run to the bathroom" thing again in the middle of Monday night. (And I missed "Midnight, Texas" last night to boot...darn.)

Oh well. There's today to look forward too....

TUESDAY - SEPTEMBER 12

All went very well - for a Tuesday.

WEDNESDAY - SEPTEMBER 13

Wednesday are my "if anything can go wrong" day.

I woke up with a headache.

I woke wanting to puke.

What I DID is I made my hubby's lunch, took an extra pill among my others this morning (to "dummy up" the headache) - and went back to bed.

I feel better, but not 100% until next week.

THURSDAY - SEPTEMBER 14

I went into the garden to get any veggies that I could - and lay back down. I've been telling some people that these are rugged, but this week is the ultimate.

Bonus points: I forgot to turn off the sprinkler, so we had almost no water pressure all night. (The joy of living of spring water....)

FRIDAY - SEPTEMBER 15

Bonus points if I manage to make it through the night without barfing!

No?

How about we stay and home and I go to bed early....

Such it is - but it's the FINAL DAY OF CHEMO!

WOOHOO!

*oops! Shuddupp about that "woohoo" crap....*

*gives me a headache*

SATURDAY - SEPTEMBER 16

The first day with nothing but my seizure meds! I'd be a little more enthusiastic if the nausea abated with the chemo meds.

Oh well. There's a medical check-up on November 3, but until then, I can try this on for size:


I'm a cancer survivor.

*lacks enthusiasm*

I'M A CANCER SURVIVOR!

*better, but maybe when the nausea subsides*

NOW YOU'VE BROUGHT OUT THE HULK!!!

Are you coming "from away" to Maine this summer?

Do you know that, EVEN IF YOU'RE JUST WAITING FOR SOMEONE, you MUST take up a parking spot?

I've been there, in the parking lots, as you've just "pulled over in the fire lane". I've busted you for doing so, as they are there to be a FIRE LANE, not to be PARKED IN. No matter what your excuse is, THAT IS A FIRE LANE. IT'S NOT FOR USE AS YOUR PERSONAL PARKING SPOT!

I've come across you at my daughter's employer. MOST of you get that, when asked to park your car properly, you park in the designated spaces. We had a fun one lately who decided that, for fun, she would drive around and around - and the Windham P. D. told her "YOU CAN'T DO THAT!"

Today, in the Hannafords in Windham, I ended up behind someone who decided that, at the END OF THE AISLE, he would "park and wait for his daughter". I honked. He looked at me and raised his hand, as if to say "What're you doing! I'm PARKING here!"

I yelled out to "choose a spot". He decided to do what Windham P. D. DOESN'T WANT YOU TO DO! HE CHOSE TO GO AROUND AND TAKE UP THE SPACE AGAIN! AND GAVE ME NO END OF GRIEF WHEN I TOOK UP WITH HIM THAT HE WAS NOT IN A PARKING SPOT AND WAS GOING TO DAMAGE SOMEONE'S CAR!

I reported him to the Windham P. D., so hopefully, he does that again.

In the meantime,

IF
YOU
AREN'T
GOING
TO
PARK
IN
A
PARKING
SPACE
DON'T
COME
INTO
THE
PARKING
LOT
!!!!!!!!

Of course, I could decide to carry a small blade on my person or perhaps a tack - something that will poke a hole in the tire, but drive the driver crazy when he keeps having to check his tires every couple of weeks.

The  Hulk is out, so we never know..... 

"Fireblossom and the Dream Weaver"

I feel bad for the characters I have to deal with for the current work.

They were "semi-sort-of-made-real" way back in the 1980's when I started the story. It actually started out as a tale of Amy helping Max Rockatansky when he was old and couldn't see for a Creative Writing class. It was a C at best because it involved some of the danger from that series. It went into my desk and was eventually forgotten.

By 1988/89, the characters changed to a young witch, who'd been really young when her father and herself were expelled from Portsmouth, New Hampshire. Max became the second son of a Lord of Colby, newly granted the name SIR Maxwell Colburn.

They granted me five initial notebooks of the story.

And then I decided to "do some research".....


Do you know how PISSED you make your characters when you stuff them into a box and haul them through several houses before you complete the "research" and start again?

Let me put it to you this way, which is the way it appears to happen to ME.....


Amy McCullum, a cute redhead with the greenest of green eyes, is just blossoming into a fine lady. She's been raised by the Indians, primarily, but has some of her father's "life lessons". (She's only been orphaned for three years.)

She thinks I took TOO LONG for the research.

Sir Maxwell, tall, dark and handsome, has developed a certain type of egotistical mastery I've got to figure out how to deal with. He's regally pointing out that a girl of Amy's standards should have to be MUCH lower on his scales, DESPITE the fact that she makes his heart do a stutter-step every day.....


And I've got to get them together for a while further.....


Wish me luck......

Trump, LePage and the Decimation of the USA

Here in Maine, we have Governor Paul LePage - whom I haven't figured out HOW we ended up with HIM again - who is "making Maine shut down". The reason?

THE VOTERS RULED THAT WE MAKE PEOPLE WHO EARN OVER $200,000 PAY AN EXTRA 3% TO GO TO THE SCHOOLS!

We've been bickering, negotiating, etc. TRYING to get him to let go of his "Trump would do THIS"....

And I've mentioned on Twitter and Facebook what he would do if, instead of the pages of the budget he's expecting, we put Impeachment Papers........

*sad face*

And the Cheeto Burrito?

Don't get me started on HIM!

Since he's been inaugurated, he's lied, cheated, blamed others for his sins.....

Can you tell I'm wishing for Karma to "Take Out The Cheeto Burrito"? Nothing devastating, like a nuclear hit on the White House, but enough to make him decide he DOESN'T like this job and he's backing out before he does more damage.

PLEASE!

But at least this week, I'm seeing some hope.....

I'm seeing Republicans who have been 100% for the President taken aback.....

I'm seeing Spencer's replacement falter....,..

I'm seeing the GOP cower at the fact that he's purported to be Republican.....

And I'm seeing the power-mad Congress starting to fold.....

And as long as there's hope......

(I'm leaving you with the story from the Boston Globe:
https://www.bostonglobe.com/metro/2017/06/30/maine-senate-gives-initial-budget/omGsdYeYyjoGTse6aPlNXM/story.html )



November 28, 2017: Adding on....

This is the week that the Senate will vote on Trump's Tax Bill https://www.nytimes.com/2017/11/27/us/politics/senate-tax-bills-potential-hurdle-republicans.html

Facebook friends are trying to tell me to "let it go", but this is worse that his "skinny bill". Add to the fact that the Koch Brothers managed to acquire Time Inc. several days after they said "We announce the Person of the Year on December 6" and it sincerely looks like, after Christmas, it's time to Impeach Trump......

http://www.cnn.com/2017/11/25/politics/donald-trump-time-magazine/index.html

That is if you disagree with the Koch Brothers and DON'T wish to see his smug face as Time's "Person of the Year".....because that would play into our President's narcissism (noun: excessive or erotic interest in oneself and one's physical appearance).

An Anniversary Of Sorts

Multiple people have asked for this little tale, and in honor of the "anniversary of the brain tumor", I'll honor you by offering the following.....


The March Brown Chronicles (because Bill ties flies and this was what he was seeing hatch):


It all started back in March, when Bill came to my workplace to give me "the bad news". He'd had his ankles re-evaluated, the news was bad in that they only saw one way for him to be able to go: surgery.
My manager came over to "help" and was there when the REALLY bad news came in.

Bill was going to have to go under the knife in the summer, I was going to have to stay home and watch him for the first two weeks. and we were going to spend all of our IRS Tax Refund on just this.
Of course, my manager understood, saying how that was in the middle of redoing the POGs for Back To School, and we were going to ALL be at the store, etc.

Bill wasn't having it, so the manager had to "buck up" and give me the weeks off. (I was already upset with his behavior, and this made me REALLY hate the manager, having to go over his head to get the necessary time off. I still sort of blame him for what REALLY happened.....)


Several months later, at the end of June because his surgery was to take place on June the 27th, we took a vacation in Sourdnahunk, because our week "away from the crowds" started when our cell phone use runs out and we've driven another 10 to 20 miles further. It was about 60 to 70 miles outside of Millinocket, and as a "last blast", it was memorable. Bill brought his boat to fish, and one day, we went out for a tour. We saw the wreck on Elephant Mountain of the B-52 in 1963. (For the whole tale, go here: https://en.wikipedia.org/wiki/1963_Elephant_Mountain_B-52_crash) On Thursday, the one "rainy" day we had was supposed to be spent getting pictures, but I forgot the camera....and when we got back to camp, I didn't want to go back out. I don't know how to describe it, but I felt "off" somehow. Even the drink I did after dinner didn't set right and I left half of the glass. We made an early night of it, crashing in the tent with my hubby, my little dog, and myself.

I'll let my hubby's Facebook take it from here:

"At eleven PM my world changed in an instant, I awoke to my wife in violent convulsions, she was having a seizure. I held her until they stopped , carried her to the truck and prayed. I am not easily scared , but I will tell you this , That period of time was by far the scariest thing I have ever had to do , could get her the fifty plus miles to Millinocket hospital in time. One hand monitoring her pulse , constantly talking to her , she is unable to respond . I know I have to balance speed of driving with staying on the roads, keeping an eye out for Moose, one runs out in front of me , I slow and trail it , I mutter out loud that "Moose I don't have time for this now." Debi is just starting to become aware of her surroundings, she still cannot respond to me, she tells me the first thing she sees is me racing a moose, then she realizes we are in the truck . finally she is able to speak again. "what are we doing where are we going?" I tell her she had a seizure and we are headed to the hospital. Now I am relieved we are there, hope starts to return. They do some examination talk with me about what I saw, medical history. they do a CT scan. The doc tells me they see something there . they have no neurologist and have sent it to a place that reads them 24 hours a day. They confirm an abnormality and I am informed she will be staying in the hospital and transport to Portland tomorrow.. it's now three am , me and the dog drive the hour and a half back to get our gear. no sleep for me . back to the hospital check in . state law would not allow them to let me transport her to Portland. So I kiss her goodbye head for home and start unloading gear. on the way home I called my son and daughter and told them the news. called my ankle surgeon and cancelled surgery for tomorrow. Finally in Portland they tell us that they will be keeping her in for more testing . Saturday morning they give us the news she has a tumor on the left side of the brain and surgery is Tuesday." 

This is accurate - except for MY part in this tale. I went to bed, as normal. I woke up in the truck, Bill's hand over my pulse as he's racing the moose and I hear him say "Moose, I don't have time for this now!"

I think "Boy, this is an active dream!" - and sort of drift back out, the dog on my lap and unable to get my dream-self to ask Bill what we're doing.

It was another several miles before I was able to ask "What are we doing? Where are we going?" after having a couple of Tic Tacs to moisturize my mouth. Bill looks like he's talking to a ghost as he confirms the seizure.

The rest happened as he said, with him taking the time while they're running tests to give his version and me telling mine. The funny thing about the ambulance driver is he was in a group who'd been on Sourdnahunk the day we arrived, so he was explaining to the EMT how far away we drove from...

And the EMT is looking at me the way people stare at Danica Patrick.

Saturday's MRI was actually at about 12:30 at night, when I was nice and sleepy. I was still in the haphazard "suit" Bill had put on me on Thursday night/Friday morning, as they hadn't changed me into a johnny, but I didn't have a situation when I needed to be pulled out. Thank goodness for a friend introducing me to transcendental meditation.

I was allowed home on Sunday - and boy, did I need that shower! I had been in the same clothes since Bill pulled me out some clothes in the tent Thursday/Friday - and I was starting to feel really ripe!

Back to Bill's March Brown Chronicles:

"We had the appointment with the neurosurgeon this morning. The tumor is larger than expected , and near motor and speech areas. So they will remove as much as they can safely . Then they will test type of tumor and plan next parts of therapy. Surgery will be a week from tomorrow. Lots to absorb and process. Thank you all for your kind responses."

My son, my sister, and Bill all went to this first visit with me. There was a LOT of information, partially how long this had to develop, what my chances where.....

As Bill said, it was a lot to absorb and process. Of course, being us, my son and I had been talking like Arnold Schwarzenegger in "Kindergarten Cop": "It's not a tumor."

That morning, we kept saying "It IS a tumor!"

On 6/29, we went in for the MRI that would tell the doctor where my brain was going to be effected when he removed certain parts of the tumor. The fact that he would be having me "awake" during parts of the surgery, talking to him and his nurses, I was trying not to let bug me.....but it did.

Little things got taken care of, like the Power of Attorney and collecting my things from Staples while I still remembered having things to collect there. The other employees were shocked, but understanding. Troy, the Assistant Manager (at that time) tells me that the day I came to get my stuff was the worst day....

I can think of one more.

On 7/5, we went in to have the surgery. The Power of Attorney was accepted. We were told that I was "a little unusual" because three areas of my brain reacted to the stimuli that were supposed to make one area "light up". Meds were given. I was wheeled out into surgery....

And I have to go to Bill for the "result":

"Debi had surgery this morning. They were only able to remove a small part of the tumor. There were complications. She will need to have another surgery to attempt to remove more . Surgeon thinks maybe Friday. Not the outcome I had hoped for. She is unaware of this at this time."

All I remember from the 5th is being downstairs in the recovery room for a LONG time, sleeping (or so I thought) while they arranged for the transfer to the 6th floor. Bill continues letting people know what's going on in Facebook the next day:

"Second visit wth Debi last night , she is still having difficulties with speaking words but showing improvement. I will be updating later, yesterday was very taxing both mentally and physically for her. She is an incredible woman . If she is up to it I will bring the grand kids in to visit."

And the next day, he posted this:

"On this mornings visit there was not enough improvement for surgery tomorrow. Possibly Tuesday. 
A little explanation on why I have titled these March Brown chronicles, as.many of you know I am an avid fly fisherman. The March Brown is an early season mayfly. Where this ordeal started at was Nesowadnehunck, one of Maine's best native brook trout fisheries. My beautiful wife went there with me because of my love for this spot and as the final leg of what was my Maine Mecca fly fishing / good riddance to pain tour. She does not fish. The mayfly hatch at the time was the start of the March Browns, as each night came the hatches became larger and the dry fly fishing pace became faster. One of my most favorite times of the year. And in an instant our lives changed .

You already know the rest of the story to date. Those images will be forever tied to the March Browns for me. Be kind to all, hug your loved ones!"

I didn't know that I was having seizures, so this next one took me by surprise:

"After a rough start and complications from additional seizures yesterday, the Doctor changed meds and Debi is moving in a positive direction. The seizures are under control again and she has more speech ability today . She greeted me at the door of her room with a loud and clear hello! She still has difficulty with words coming out but it is much improved." 

I was told by a couple of the nurses that the "speech impediment" was the reason that I was still at the hospital. Despite reading Sherrilyn Kenyon's "Styxx" while left on my own (which I wasn't supposed to be able to do, baffling the doctor), I felt fine....except for the little "blood bag" that was still attached to my skull and the bag of fluids they had going into my arm. I had started Keppra as soon as I arrived at the hospital the first time, so when they added the Dilantin, I thought that it had to do with my "slurring" my words, I had no idea that I'd been having seizures right along.

Bill would come in and visit for a while, go take care of some things, and then come back in the evenings, but he didn't update Facebook for a little while. The "blood bag" had served it's purpose and was removed. I was allowed to shower with a nurse in the room - and whenever they left me alone, I was reading "Styxx" as much as my head would let me. We had a couple of RN's we really liked, one who had noticed my tattoos and came in to compare hers, and Paulette, a little "blond" (her hair was mostly grey) with glasses. I had also met Dave, who came to take me out on slow walks, allowing me to circle the nurses station and was able to confirm that I had not sustained any muscle damage during the surgery on my head.

On July 11th, this was Bill's disappointed entry:

"The morning started out with a couple of disappointments. When I arrived at the hospital I had missed the Doctor . He evaluated Debi and cancelled surgery plans for Tuesday, Friday is still an unknown. While visiting her she had another seizure. One more step backwards . She was of course upset by both things. They tested anti seizure med levels and found them low . The dosage was adjusted and she spent the next few hours recuperating from the morning. I stayed with her until ten a.m., then off to take care of insurance paperwork for her employer and send copies of the power of attorney forms to Cigna and Mercy. I brought the necessary papers to be faxed to the shop, Colby sent them out for me, talked with Chris and Hope, they have been so supportive of me. I cannot fully express my gratitude, I do not know the words to adequately thank them . they have taken a huge burden from me while we sort this out.

When I returned she was just waking back up to have her dinner. the Doctor came back in and spoke to us, and told us there may be physical and speech therapy necessary before we get back to a safe point to try surgery again. Our favorite angel was in charge of her care again today, Paulette , I feel comforted when she is there. She is kind and truly a caring individual. The Doctor suggested that I walk Debi around the ward, she agreed and we went three laps around. It was very good for me to be able to do this. It lifted my spirits and hers. When I helped her back into her bed I kissed her and thanked her for the dance. 

This week has been very difficult for me, and I can only imagine how much harder it is for her. I wish so much to be off this roller coaster ride , but I also know there is a lot more to go before we will be through this. We thank all of you for your thoughts and prayers. Be kind to one another, and hug your loved ones!"

Chris and Hope are his bosses, and Colby is Chris's daughter, just to explain to any who want to know that. *wink* 

And the next day, this was his entry:

"Debi never ceases to amaze me. With all the turmoil in her world she still worries about me. She encouraged me to go play pool with my team . It was very therapeutic. Great to see everyone! It was a necessary distraction. This morning after sleeping in until seven , a first since this all happened , I took our dog down to our friends camp , checked the boat and Pookah went wading. Took him home and on to the hospital. I arrived to see her with a big smile on her face and doing better today. No further news on when surgery will be. They may have to do physical and speech therapy first. She is still this fisherman's best catch ever. As always be kind and hug your loved ones!"

Bill's next entry was what room they were moving me into on the floor. That was a one night thing, as they decided to ship me over to the Rehab Center:

"Took little dog out for some much needed time to spend with him. we went for a boat ride on Little Sebago. . he hasn't had much of my time recently. It was good therapy for both of us. went to the hospital Debi wasn't in the room they told me she was moving too. wound up having to demand the information I have been requesting. finally got a few answers. She has been moved to a less critical care ward as she has improved. They were supposed to come speak to me about the possibility of her going to a rehab center or coming home and going to therapy appointments. this was supposed to happen before my optometrist appointment, it did not. returned to the hospital after appointment. tracked down the same staff and and told them they were not leaving until I got information. The rehab person came out and apologized for not getting to me at one. discussed care options, the best way for her recovery was the rehab center. Now everything goes into hyper speed. they called the insurance company got the authorization. Debi is now in New England Rehab Center. The current plan is five days of speech, physical and occupational therapy. The goal is surgery on Tuesday. She has improved the last two days. I hope and pray that rehab works and the next surgery works. Til the next update, Be kind, hug your loved ones. None of us knows what's around the next corner."

This was on July 14. I arrived at the Rehab Center at about 6-ish, saw the doctor, and got settled. The Rehab Center had me all set up the next morning to have an hour of speech, an hour of physical therapy, and an hour of occupational therapy, broken up so that I could have a nap between. They had all my pills on a schedule. They had MUCH better food, allowing me to choose more like the mediterranean diet that I had gotten used to. I did MUCH better than they expected me to, using the PT to stretch properly, showing the OT that I knew more than I could say (which led her to give me the words "Aphasia" and "Apraxia" to look up when I got home), and the only one I was sort of behind on was the ST. I could see the word in my head, I could have the wish to want to say it - and it would be no more before it reached my lips. (VERY annoying - and one of the few things I still have to bother me from last year.) I've gotten better, but it's still there - particularly if I miss my 2-ish nap. I go to bed with everything working, and then I wake up like Caesar - the Monty Python version of him;

Yeah, that would be what I sound like......on a good day......with proper meds and a good nap.

By the eighteenth, when Bill was trying to get the Rehab Center on the same page with Maine Medical Center, he wrote this entry:

"After checking with the rehab center and finding that as of this morning there were no discharge orders, I contacted the Maine Medical centers admissions department to check on surgery status, it was still scheduled. contacted the doctors office and got final confirmation. The much awaited second surgery will be tomorrow morning at 7:30 . I will pick up and transport at 5:30 am. I can assure you that Debi is stronger today than she has been since the first surgery. her statement to me is I want to get this part over so we can get to the rest of the treatments. She is strong and determined . We will hope that this time more can be removed . We appreciate all of your support. Keep the prayers and positive vibes coming. As always , be kind and hug your loved ones!"

Early in the morning on July 19, Bill posted this:

"I awoke at 2:30 am , shortly after that my beautiful wife texted me three simple words........I love you! I responded in kind. Neither one of us was surprised the other was awake. We were both thinking about the surgery in the morning. As most of you know this was a second attempt. This surgery went very quickly and they were able to remove a large piece and the doctor said she responded much better. She will be recovering much of today and I will keep you.posted on future events." 

He didn't post because he was in the hospital, dealing with the "dipstick on the 6th floor".

The first indication that I was going to have trouble was the fact that the RN didn't understand me. I would press my button, say "I need a bedpan", was assured she heard me - and no bedpan. No "help to the bathroom". No NOTHING. So I tried again. And again.

Finally, after two hours, with my bladder threatening to burst, I caught the blood bottle in one hand, the fluids they were pumping in on the other, and I made every buzzer light up as I raced to the bathroom, dribbling pee the whole way.....and then they had to put the "blood bag" back where it belonged.

And they took notice - at least, for a little while.

When Bill came in, I tried the buzzer, telling him I had to pee. They responded, hearing that I had to pee......

And then nothing. 

I was already squirming, so Bill went to the nurses station to find out who was responding to me. She was standing right there, telling him I was "hard to understand". When he got her to the room, she stopped by water intake to correct something there and was on her way out when Bill said "Is she supposed to pee the bed before you take care of that, too, because I've been here two hours and no one has been in to see her?"
With a look on her face that stated my husband would be dead before next week, she FINALLY got me a bedpan. (She was the one he went down to Admin to have her taken out of my life, as she was really rude, but they didn't listen..) It was, if all the other nurses all knew this as she didn't:



On 7/23, this was Bill's Facebook page: 

"Debi is now home! They moved up discharge to today!"

Did it surprize me when I got shipped home on on Saturday, the fourth day after the second surgery?

Nope! Not when the RN totally ignored THIS as my "difficulty in being heard":

The first week was mostly sleep, as much as that bugged Bill, but each day, I was feeling better. Apart from the shower I'd taken pre-surgery, I was pretty dank - so that was the other place I wanted to spend my time. To make Bill feel better, I sat and went over all the paperwork I had, learning which glioma I had.

For those who haven't followed this WHOLE blog, it an Oligodendroglioma. According to the paperwork, they took the equivalent of a baseball out of the left side of my brain. (I don't know WHY the RN couldn't understand me!) In other words, I didn't lose anything "important", just the ability to use my left brain.....

*shrugs*

And through it all, I finished "Styxx" by Sherrilyn Kenyon.

With me able to do TWO entries for the visit we had 8/3, I'll give you Bill's first:

Here's Bill's 8/3 notes:

"Debi had appointments with the neuro oncologist and the radiology oncologist . The purpose of these appointments was to map out the next steps in her treatments. On the nineteenth we go back for a mapping appointment . The radiology oncologist was first, he explained the nature and genetic markers of this tumor indicate that the best form of treatment was to combine both radiation and chemo . The first phase will be done as five and a half weeks of daily radiation . then there will be a month break and healing time. The next phase will be a year of chemotherapy. this will be done as a week of chemo three weeks off each month for a year. All indications are that this should stop it from growing again . Next portion to inform people of , when you see an occasional post from Debi that doesn't make sense , remember that her brain has not fully healed from surgery . so when she is pushing to do more therapy occasionally there will be small mistakes . Do not worry that there is an unexpected problem . The expressive aphasia affects most of her communication skills to some extent. The important part is that she continues to improve, and that most of the speech therapy will challenge her and there will be some small bumps in the road. But i can assure you that each day she has gotten stronger and made improvements. But there will be an unknown amount of time for the rest of the recovery to take place. There have been a couple of people who decided to put there own spin on where Debi is on her recovery . I implore you to seek the facts , do not assume you know what is going on and misrepresent the facts. Each day we add a little more activity, another wrinkle in her therapy and she responds admirably. As always Hug your loved ones, cherish every moment , and be kind to all."

  

Here's mine, dated 8/4

"Here's the result of the neurosurgeon, the radioncology doc and the oncologist, beginning with the one I saw today:

Dr. Florman, who was my doctor who saw me through the surgery (despite my brain injecting the aphasia/apraxia), was pleased to announce that the glioma, a residual oligondroglioma, has all the correct markers that mark it as a grade II...

Which is good...

Next up is the radioncology doc, Dr. Bristol. He's taken this "good news" and is preparing the 20 minute five day a week radiology that I need to prepare myself for next...

And he may be the one who causes the Sinead O'Connor look, as he warns that this is the step that may cause that. We'll see.

As soon as he let us digest this, I was introduced to the lady who I will see the most of over the next year, Dr. Christine Lu-Emerson. She was risky enough to ask for the history of this story...

And was treated to the Midnight Ride of the March Brown with four part harmony...

She's in charge of the chemo that will take over my life once Dr. Bristol is done with me, and I pity her. She has to put up with Bill.and I....

*grin*

So that's the result. Thank you all for hanging with me and thank you for all the prayers."

Have you noticed how many of Bill's entries mention "love your families" and "be kind to all"? His mother told me he "believed in Peter Pan peanut butter" but not much else. It seems that, with this "close call", he's felt something.....*grin*

Any rate, after the poking, prodding, and bloodletting, I was allowed most of the month for healing and recuperation. That's when Bill got this shot:
 

I still haven't used the kayaks,,,,,

Any rate, our "next stop" on this mission was Radiation. From August 29 through October 7, I was there at the Radiation department, doing my yoga before my time, 15 minutes of the radiation, and off for the day with weekends off. We had helpers for this part, for which I owe TONS of "Thank You".

As Jim (the nurse) suggested I would - as he panned waving back hair - eventually have his hairdo for a slight time. (He's bald.) We laughed, we went through what I could expect (such as that eventual disappearance of my hair), when we'd finish....and after all his help, I left him picture of the "Radiation Mask" done up like Deadpool.

The radiation mask is fitted to your face - and then some. It feels like they're blobbing cement to you....literally.....but what comes out has a certain glory. It has a style - and mine "talked" to me of Deadpool. For 15 minutes each day, I would lie down facing up, have this strapped to my head - and try to relax. Thank goodness for transcendental meditation. I was firmly on an island, or going through my "check list", or anything other than getting nervous for that time frame. Once a week, I'd check in with my doctor, and there was never any complaint - except for the disappearing hair.....

Chemotherapy was - and is - the next step(s). Every 24 days, I stop for 5 days and take the pill that does it's duty. It's then up to me to get over the Chemo in the next 24 days before the next one - and some days, that's been interesting, like when I wasn't keeping down food. As of this writing, I'm almost over Chemo # 9 with 3 to go - I hope. Before I pick up my pills, there's a doctor visit where they take my blood. get my stats, and go over anything I didn't like in the last Chemo. The only time
I got into a really bad way was the second and third chemo, when they doubled my drug. That only lasted for two months before they put me back to the original dose....

So, on this Anniversary of Sorts, I look back on the year that has been. I hope for the future, as best as I can. I'm keeping myself busy with genealogy, writing, gardening, etc....

And I hope to see you here for Anniversary number Two.