Monday, September 19, 2011

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......


Saturday, May 28, 2011

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!


Friday, March 4, 2011

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.....

Monday, February 14, 2011

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..

Tuesday, January 18, 2011

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" ...

Thursday, January 6, 2011

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....

Monday, January 3, 2011

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

Saturday, January 1, 2011

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...