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...