Out of the Fog

Things are changing.


The fog is lifting.. at least for a week.


My latest CT scan showed HUGE promise, so my Doc gave me an extra week off (between infusions).. 


......my last was number 26.....


I still have a spot of nasty in the old pancake..too small to radiate..


We're hoping that it will soon leave my body..


Wondering what it's like to "come out of the fog"?


Here are a few things that make it great..


I can actually concentrate on something for more than a few moments at at time..


...and I can actually remember what it is I'm concentrating on...


Food still tastes the same, though..


My body refuses anything sweet, and lord knows, I would love to sit down to a bowl of chocolate ice cream....


....but that's not happening today..maybe tomorrow...


the neuropathy in my hands appears to be relenting somewhat and my feet just buzz....


I was able to read the Naomi Klein book, "No Logo"....what a joy to read her thoughts and perceptions and actually remember what I've read..


..feel like I could lift some kettlebells.. but I know that feeling isn't doing..


I guess my biggest revelation is seeing just how much my sweet life-partner-husband (and full time caregiver) does for me...


Everything from doing all the laundry to making every meal to helping me move through the day (this in itself is no small feat)....


I feel so much love for him     


(~love you David~)...... where would I be without you?


                               ....nowhere good; that's for sure..


So..that's where I am today;


....deep in prayer


.....immersed in the gratitude I feel for all my friends, my husband and my God.


My head is lifted above the cloud bank for just this week....


..and I am sooo happy..


... so very happy to see the SUN......

white bands (.......not musical organizations)

I sit in the waiting room using it for it's designated purpose; waiting....for "my turn".

My attention wanders and I find myself watching all the other people in the room who are waiting for "their turn".

Many of those around me are clearly husband and wife; some are with adult children or close friends and lastly there are those who are here all alone.......

White wrist bands mark which of us has "the cancer"......

...I can't help but wonder what kind of cancer each branded waiter has.....

..am I sitting next to someone who has "my kind"?

I have survived 19 treatments... My doc infers (never promises) that I have one more and I will be finished ingesting these chemicals every two weeks...

..I hope and pray every day that he is right....

I am a very different person than I was when I began this odyssey....

..for one thing, I thought I would only have to undergo twelve treatments and I would be cured..

..........was I so foolish??

..twenty...

......twenty is the magic number today..

After the twentieth infusion, I am going in for an MRI and a CT scan...we need to know more accurately if the cancer is still thriving inside the shadows that define the tumors in my liver..

..some types of cancer just disappear when the cancer dies, but liver cancer leaves behind scar tissue that looks just like an active tumor to the CT scan....hence the MRI......

My tumors stopped shrinking several months ago...

..blood markers continue to report that the cancer is receding...

I am back in the waiting room....wondering how each "banded" person deals with "the horror"..

I am alive..

....I am hopeful...

.......I    will    never    give     up!

to be or not...

Thank you Shari

.......Wednesday was a two-fold adventure..

The good news from my Doc is that I am in the top 10% of those who presented with this disease at the same time I did...

50% of those souls have already left this world....

"you are doing really well!" (from my Doc)..

..Gail will be continuing Folfirinox past #12....

Just did #13 on Wednesday... nine hours of fluids pumping into my body..little soldiers of chemo marching on to do battle with the nefarious tumor-villains in my liver...

......fight on little guys, fight on....

I mentioned that the side effects are pretty rude, and they are....

The neuropathy in my hands and feet grows more intense with each treatment...

It is no longer a temporary thing.....

"will I be alive next year?"..(from me to my Doc)

answer: "most assuredly.."

........."how long do I stay in chemo?"

"for as long as your body can tolerate it...."

..(previous answer to this question: "for the rest of your life!"....)

color me grateful for life and love and friends who care enough to read this and generate mountains of positive energy and...... most important of all.......hope..

thank you dear friends.....

Out of Touch

It comes like the wind..

Some days it doesn't matter at all..

..other days; frightened..

..today is a frightened day..

..... the last infusion (number eleven) was a toughie...

..really hit me hard..

The first two, this year, seemed to be a breeze (so to speak) and the side effects had somehow lessened..

..number eleven brought me back to the reality of how potent a concoction is being pumped into my body..

fingertips and toes have apparently lost the ability to transmit data from the nerve endings to my eagerly waiting brain...I shake my hands and arms to increase the blood flow, but not much going on there..

..I'm somewhat concerned about this because neuropathy of the extremities is one of the documented permanent artifacts of my treatment..

..had a taste of this in varying degrees all through the treatment, but it always is transient...usually takes a week or so to come back to normal (whatever the hell that is)...

..but this time..I am out of touch with my extremities and not too happy about it..

....number twelve (and final treatment of folfirinox) comes this Wednesday..

......they don't allow more than twelve treatments of Folfirinox because the residual damage can be pretty rude..

..sure could use some happy thoughts right now..

Where have all the flowers gone?

.........some of them are in my dining room..

..they thrive amidst the pounding weather just inches away.. (on the other side of the glass)..

these last two weeks, I found myself on the right side of the glass too...

platelets fixed, pulmonary embolism(s) on the mend, blood thinner injections twice a day..

..I feel good (knock wood)..

I am noticeably missing some stamina, but I am also noticeably feeling like a whole person..

..can't gauge the heights if you haven't experienced the valleys..

..that said; I am fully experiencing the heights for the past two weeks..

..tomorrow is my 10th infusion..

I want this....

..if the way I feel is indicative of how well my body is fighting this war, then just maybe, I have a shot..

"not everybody dies from this" plays a constant counterpoint in my head against: "everybody dies eventually"..

I am a fan of Joseph Campbell and his life's work..

..he helps me make sense of life, death and everything in-between...

I continue to battle for  more of that "in-between" ...

Changes~changing~changed

okay..tell me that isn't the strangest word group to look at..

..could be any language..

if you stare at those three words long enough, they begin to lose any coherency of meaning..

tuesday was indeed my infusion day..I can most sincerely say: "yippee!"..

Why would anyone want to go through that?

..simply put: "It's my ammunition."

..Without the infusions, transfusions, and the myriad of needles stuck into my body; I couldn't fight this disease..... "put a gallon in me Allen"......

...you see; I'm playing for keeps here. There isn't any place for "I don't feel like it"..

David gives me an injection in my tummy every morning when I wake up and every night before bed..

..blood thinner..

It's not that I enjoy the needles , I don't (understatement alert).. I just know that my lungs were overpopulated with blood clots on Christmas eve, and this is the way to eliminate what is there, and to prevent future occurrences....

.."shoot the juice to me, Bruce"...

gotta be a bit more careful these days 'cause I can bruise with a so much as a hard glance..

..they had to cut back (by 15%) the amount of Oxalyplatin that goes into my infusion....

.still takes 8 hours or so, but hopefully my platelets won't be so offended by the onrush of chemicals coursing through....

BTW: made over 160 on my Tuesday platelet count..... back in the saddle in all respects....

yesterday was a good day....

sunshine....birds at my feeders, constantly glancing over their little bird-shoulders ...

...i could watch them for hours..

.....oh yeah; I do.........

...never give up..

......never give in

life is good....

the kinks

so tired...(you know the song......)

infusion tomorrow..yay..

....here's a brilliantly glittering gem that shines through the morass of 2010 for David and me:

..as you probably know, my "twelve days of Christmas" were mostly spent in MGH either as a frequent visitor, or, from christmas Eve until the following Tuesday night, as a patient in residence...

on December 26th and 27th, Boston was hit with a massive snow storm..

since David was staying with me at MGH, our house was buried.. When David went home on the 27th to feed the dogs and shower, he was exhausted from lack of sleep and concern over my problems..

never-the-less, he was resolved to shovel the driveway, walkway and steps in hopes of my (as of that time, unscheduled) homecoming..

the snowfall was in the neighborhood of 18" but when David arrived home that day, the driveway, walkway and steps to our house had been shoveled  shoveled and cleared..

my husband literally wept with gratitude and surprise as he pulled the car into the driveway..

.... our emotions are pretty tweaked these days..

over the next few days, we discovered that our neighbors had jointly participated in this task..

David and I may have missed Christmas at home, but this gift is very likely the best Christmas present we could have ever hoped to receive..

Thank you to all our good neighbor friends..you are so much appreciated in this time of stress and confusion..

We don't really know each other very well, but the goodness of your deed shines like a beacon in the night....

thank you

New Year Happy

Made it to 2011!!

This has got to be a better year for David and I...

..that's what we tell ourselves to enhance the forward motion and not allow ourselves to dwell on the negative aspects of the last twelve months...

"always keep your eyes on the road and never look back"........

..here's a short list of the things I am grateful for this morning:

1~ I am in my own home to experience the first day of the New Year..

2~ I am not in a hospital bed..

3~ I love and I am loved...

4~ (this may seem trivial, but...) the sun is out and it is NOT snowing..



..I came home from MGH late on Tuesday night (almost Wednesday morning....)

..platelet count is increasing at a steady rate and my DVT is now being controlled with twice daily injections of LMW Heparin...

....The pulmonary embolism will (hopefully) dissolve over the next six weeks.....then I can cut back the injections to once a day for the next six months...

..waiting to reschedule my infusion..really want it so I can continue to fight this disease..

..sleep comes in fits and starts these days (and nights)..

..I awake periodically with my mind buzzing, like a beehive with a bears paw inserted up to the elbow..

.."remember Gail, don't think..."


It's a beautiful 1st day of the year here in Boston..

..sun is bright and powerful..

..there must be a hundred birds at our feeders. their happy noise fills my house..fills my head..

...my kitties and wieners cling to me..

I am awake..

..I am strong..

...I am here...

Breakfast in Bed

Good morning sunshine...

beautiful, windy, cold day..

I'm watching the world from sixteen stories up...

yup...still in my MGH bed...still a gorgeous view...

still experiencing the meticulously professional and empathetic care of my MGH friends...(thanks again)

...still longing and hoping and praying to go home....

my doc (Jeff Clark) stopped by yesterday and promised my discharge for Wednesday or Thursday, depending on that pesky platelet count...

....it's increasing (btw) and I topped 41k on last night's draw...hoping for higher this morning..

heparin iv has been tooling along since yesterday..

next step: transition from iv to injection..

learning curve note:

 the heparin and (soon to come) daily injections are to prevent future clots from forming....the existing clot will be slowly removed by normal healthy blood function....

how cool is that?

all this fussing around with my body chemicals for the last six months has resulted in some sort of chemo-confusion for my blood-production mechanism and some tweaking on the management end is appropriate from here on in......

feeling good...

..feeling positive .....

......feeling homesick.......

Merry Christmas

..after a week of daily visits to my docs and nightly visits to the MGH ER...

.. Friday evening was yet another ER visit dictated by a call from my doc...

..blood clots in my lungs (sortof explains the shortness of breath)..

Combined with a low platelet count, this amounts to a medical catch 22..

Apparently, this (the blood clot part)is pretty common for pancreatic cancer patients in chemo..

Usually treated with daily injections of blood thinner for six months, except...

My blood is already too thin and I can't begin a remedy for my lungs until I resolve my plateletcount...

Christmas Eve I transitioned from the ER to a hospital bed and pincushion-time..

David takes up residence in chair by my bed and won't leave me alone here...

Christmas Day comes and goes...

David goes home for an hour to attend to anxious wieners and kitties and back by my side for another night together courtesy of MGH..

We're hoping to go home today...hoping...

I don't think they'll let me go until I grow some more platelets...

...trying; really, I'm working this platelet thing as best I can...

One good thing: the view here is of the Charles River from 16 floors up..

David jokes with my nurse that this a view that he wouldn't be able to afford under any other circumstances .... He pauses and smiles and adds: "I guess I wouldn't be able to afford this either, without insurance..."

We count our blessings and are thankful to all the MGH and Yawkie people who gave up their Christmas Eve and Christmas Day so that I could continue to inhabit this world...

Christmas is truly a time to be thankful....

...we are..

"platelets"; not just tiny plates...

Christmas Eve..

May the joy of this wondrous Season overwhelm you, who read this.....

Quite a week around here...

Took a spill Monday night, which triggered a trip to my doc on Tuesday morning..

Draw blood and check.....slow day in the lab, so the results came back after we had gone home..

phone: "Come back to MGH emergency room, your platelet count is so low we're afraid of cranial hemorrhage"....

Tuesday from 3 until 8:30 in the MGH ER having more blood drawn..having CAT scan of my head....waiting..waiting ...waiting


..how do people work in these places, day after day and still wear a smile.....

... and still care...?


CAT scan says okay....blood tests say "platelets are still low"...come back tomorrow for a recheck..

wednesday into MGH for another blood draw....another lab test...

..platelets are even lower; ......oops....

come back tomorrow for another test..


Thursday into MGH...blood draw (starting to get sore there)..

good news.. platelet count is marginally higher....

come back tomorrow for a recheck...


Here we are on Christmas Eve in the infusion center at Yawkie (MGH cancer Center).. port access...
blood draw and wait for results...an hour goes by and they return to take another blood draw because the count is so low that it is: "silly".....

..three hours later...platelet count is still really low, but appears to be increasing slowly...good enough to go home........

"See you on Monday for your infusion........"

Thank you everyone at MGH and the Yawkie for caring about me and my platelet count and for being there on Christmas Eve to pamper me as best you can...

Thank you, and Merry Christmas....

dancing on the head of a pin...

....been a bit since my last post..

that's 'cause I am pretty much incapacitated once the chemo kicks in..

..not like I wasn't warned..:"the side-effects are cumulative"..(very important thing for me to keep in mind as I head towards my ninth infusion...)

..it's so hard to be conscious and coherent..i mean, conscious is natural, and sadly, unavoidable at times when I don't want to be... (and when I say conscious, I mean awake)

...coherency involves so much more....

..the days slip by as weeks and I have no energy to move..my thoughts are a mantra of "death to cancer"..

..when I climb stairs, I am out of breath and "done in" by the time i reach the top.... even as I crawl up on all fours step by step, my energy is draining out of me as if i had a leak somewhere that was getting larger and larger.. my slim supply of energy pouring out of me..

the haunting question every moment is this: "Is this the cancer progressing?"..... or: "is this the cumulative destructive effect of the chemo?"

....David and I hope and pray that this is side-effect-chemo stuff........

..this chemo regimen is new as of July of this year... I am a willing and eager guinea pig for this, the most aggressive chemotherapy in existence .... kill the f'ing cancer please! I'll do the time....just please work!

tomorrow is CT scan day...lungs and abdomen..

..my doc thinks I may have some blood clots in my lungs, and that's part of the shortness of breath..

..not to worry, pretty common event in the world of pancreatic cancer and a shot can clear it up...

Monday night was tough..

..preparing for bed and..while in the bathroom fell backwards into the bathtub..

..i was just standing in front of the sink and as I turned, back I went...

ended up sideways in the tub and conked the back of my head on the lip of the tub..

didn't hurt so much, but scared the hell out of david (who came running when he heard the ruckus..)

yesterday David took me in to see Emily our NP oncologist...he thought I might be anemic again, as I was having a hard time sitting up (or moving much at all)..

in to MGH in the morning.. give up more blood to be tested...

..looks like an intestinal virus is coursing through my guts and making a bad situation worse...(today is much better, by the way)

..so..home we came and within the hour, a phone call from Emily to head back to the MGH emergency room..

seems my platelet count (the little guys responsible for clotting one's blood) is really low and they want me to have my head scanned...

..this is not someplace you want to spend any time..

..five hours later we finally get back home to needy wiener dogs and aloof kitties and a late snack for dinner and (best of all)......bed.

I am Gail...the same  person who could swing a 110 pound kettle bell in June....

David says I am the strongest person he has ever known..

I will not ever give up...

..just get a little tired sometimes...that's all..

feelin' alright

Tuesday after the Monday infusion and I'm a walkin',  talkin' success story..

Yeah, I'm moving a bit slow and the neuropathy is maxed out.....

..but this sure beats the hell out of being anemic...

thank you for my two units of blood last week..thank you..

..actually got out today and spent three hours with David; running errands (well, I wouldn't call it running, exactly)..

..survived with bells on..

only downside (other than the previously discussed side-effect crap) was the frigid temperatures almost disabled my eyes..

..apparently the neuropathy can affect any part of the body that's exposed to the cold..

i have three words that bang around in my head over and over...

"die cancer! DIE!"

confusion~transfusion

well I'm back for a moment in time..

Monday (two days ago), David and I went for my all-day infusion odyssey.

I wasn't feeling physically ready for another onslaught, but mentally; "bring it on"......

Pale, wobbly and fatigued beyond reason...


anemic....

that's the word of the day in my world...

no infusion for me....instead?

two units of red blood cells to kick start my red blood cell balance and (hopefully) recover some semblance of energy and coherence...

i should feel something good by tomorrow (Thursday)...

that's what they said..

back to MGH next Monday for the missed infusion and then on to a CT scan and blood tests to evaluate my progress..

today?

kitties, wieners, rest, pills, rest, pills....try to eat something.....pray..

good day for a nap....

lost a week (or so)

I am sick all the time now..

just trying to find a way to make it stop..

..when I sleep, I don't hurt....

..that's a way to stop the sick feeling...

sleep..sleep..sleep..

...sick..

sleep..

What is all this?

what? how? who?...

round and round the merry-go-round..

so sleep it is...

Tuesday (11-23-2010)

Tuesday, Tuesday...so good to me...

Feel like I'm inside a tin can...

So happy to be home, but.......the shakes are taking over my entire body...

Shakes and neuropathy are a major influence on my daily agenda..

today: stay home, rest and rest and STOP SHAKNG, PLEASE......

..5FU humming along in my little pouch...

The tremors just keep coming....my legs....my tummy.......ugh..

I made it through seven....

Monday (11-22-2010)

MONDAY MORNING.......


It's 6AM and David is up, showered and dressed..I look up from our bed with sleepy eyes....

"Best get moving. Today's the day."

I totally forgot..(really, I did)...

Shower, dress, breakfast, and in the car..

Traffic is backed up and dead stopped, but David knows all the side ways to go....

He's good with that......."you have to be in Boston by 8..."

Park the car and upstairs to hook me up...the needle doesn't hurt at all (thank you John)....

Downstairs to see Emily (my nurse practitioner) for the go-ahead...

"you are the best we have".....she says....Others are doing good, (but Gail is doing the best)...

I let them know that it's because of my friends and the prayers and energy they send my way...


I will do this!


Back upstairs for my infusion...

I get a bed...I get the quietest room....

For the first time, I sleep, sleep, sleep....

David sits by my bed, reading his book and watching over me....He calls this my "dormant state" and tells me he is my protector while my defenses are down......

Nurse John keeps my pumps pumping......

sleep

Now it's 8:15 and time to hook me to a port-a-pump and off we go....

dinner......

bed..

sleep

Sunday (11-21-2010)

Sweet Sunday..

Papers, puzzles, funny papers..

My dad would always say, "you're funny enough"...

yes, I am..    :-)

Last night I had a moment where my head came above the surface..

I felt good, really good...I was even able to make a dinner for David and I.

Today....not so good...I feel like flat mush..

..all the color is washed out of the world today...

I try to think happy thoughts....I really do.

David took me to the grocery store with him...couldn't do it..

Oh I tried..walked around with so many moms and their daughters...gathering cans of pumpkin and cranberry sauce....I can feel myself slipping away.....

...I miss my Grace.....

... I miss my life...

I begin to crumble and retreat to sitting in the car with the wieners....

It's the thinking thing again.....I'm lost in a sea of sadness and what if ....and why... and how did this happen...?

.........try so hard to think good things...

Tomorrow I am back to start all over again....

I know I need to be strong....not really a choice...I must be strong...


I'm scared....

Saturday (11-20-2010)

..oranges..I crave them..

.....cut and suck..cut and suck..I just want to suck the juice out of the segments...it isn't so much orange juice that I want....it's the entire process of biting into the piece and drawing the liquid from it....I am sick with desire...

I can see it in my mind..when I tell David, we head out to stock up on oranges, grapefruit, limes, and a pineapple.

Arriving home....coat is still on..I am slicing oranges in a frenzy..the juice in my mouth is exquisitely satisfying.....cut and suck...cut and suck......I'm actually enjoying consuming something...



I have 48 hours in which to find the strength to start this cycle again...will I be ready?.. can I do this?

..this is not a trick question, but it is a question that must be asked..

...and answered..

.....by me.....

My answer is YES!!!

..never quit...never give up....

..I am committed to enduring whatever it takes to overcome this disease...

...as long as I can stand up....as long as I am breathing.....I will continue to push this aberration..this distortion of life......from my body...

I will be whole again....

Friday (11-19-2010)

..this was a lost day..

..the abdominal discomfort is unapproachable with medication...

so cold that I relegated my day and night to the bedroom with space heater and electric blanket..

..we're talking 75 to 80 degrees for fragile comfort...

...hard to come out of myself today..

Monday is coming soon..