Reflections on HOPE, and good news...

I've been too busy
living
to have much time
to reflect
on my predicament.

Denial?

Not
exactly.

Well,

maybe a little.



It does amaze me to experience a sort of physical amnesia about the pain and suffering of the past three years, when I read back over the posts.  Don't get me wrong, I'm grateful. Grateful to be one of the 80% of us predisposed to optimism (see The Optimism Bias) since I seem to be able to morph even terminal cancer into a mostly ecstatic life.  And I do believe that in some cases ignorance IS bliss.
But, more than that, I think this forgetting is mostly a good thing.  Some things, like pain, and childbirth, ARE best forgotten, or why would we embark on another pregnancy? Or a major surgery?

Its HOPE.

Hope and amnesia.

          So, after spending some weeks really, truly coming to grips with my immanent mortality, composing notes to be read upon my demise, and rehearsing the generous "I don't want you to be alone" conversation, among other cliches, I was angry and depressed. Being a Pollyanna doesn't give you many tools to descend into the pit of despair with, and behind my facade of normalcy, I was sad. Weepy and 'woe is me' sorry for myself, and filled with longing for the long life that I was unlikely to have. My tumors were growing, and the next chemo was horrid and disfiguring.

BUT:  to the rescue! After my case being presented to the Liver Tumor Board, I am now a candidate for liver surgery, and there is hope that they can actually remove the last of my cancer, (along with quite a bit of my liver) and that the remaining bit of my liver will be able to regenerate itself, like a chameleon's tail.

And then I could be disease-free!

THAT is my hope.

Lunar eclipse

So,
I am preparing for
liver surgery.



After the Wedding.

(And
a
chemo
holiday
until then!)


Sometimes,
hope makes all the difference

Xina's Report...or, "All's well that ends well..."

We ended up at Fox Chase Cancer Center, in Risk Assessment, after all
 Just to make sure.

(Just to set her mind at ease and talk to someone who knew what they were talking about.)

Only I could tell that she was nervous, as we sat in the waiting room,
                                       which is a pretty scary place,

                                          just because every other person in there has cancer.

Anyway, she went in alone.

So brave.

And then they invited me into the exam and consultation. It was ... thorough, professional, directed at Xina, reassuringly normal, Normal, NORMAL!!!

               (How little we now about our bodies, how various they are.)

Best of all, compassion and connection oozed out of our caregiver, who listened and made sure we didn't have any more questions, before she let us go.

We exhaled.

We had permission to resume life, as normal.

I felt like a phonograph record suddenly starting again after being lifted, silent, poised over the rotating vinal...picking up the tune right where it left off, as we went out to lunch, chatting casually.

Its a cliche to say that the not knowing is the hard part.  But it does feel like suspended animation, in a way, to wait for news like that, like the hovering needle, amazed that somehow the record (read 'life', here) has the temerity to continue rotating below without us, its lovely music just beyond reach.

Its Nothing

Because X found a lump in her breast, of course we dropped everything

Which

was

of

course

impossible

to

do

what

with

the

HVWAC

volleyball

Championships

and

all.

But people can be really nice when you let them in and ask for help.  I called and got an emergency appointment at her GYN office, yes, they could see her on Monday, so we could bring her home 

early

from the Championship Celebration dinner

at the Eveready Diner

in

Hyde

Park

The Doctor was annoying. "Nineteen year olds don't get cancer" was her comment, even before she had examined her, which I probably wouldn't have taken well  from a male MD, but...

"Its probably nothing."

Is this meant to be reassuring?

She looks, and examines, 

carefully,

which is good.

She says it could be this or that, both benign, that its not cancer, but writes a prescription for an ultrasound, bilateral, which she suggest X have before she goes back to school. She says its probably normal, but X should cut out caffeine, chocolate, soda and coffee...yikes! this is hitting close to home!  X asks questions, but we still feel unrequited....  

None-

the-

less,

rather than have it hanging over her head for the remainder of the semester,

X rearranges her classes, reveals her predicament to her two professors by way of explaining about missing yet another day of classes, ( when it becomes clear we cannot schedule her until 10:30 the next day, even with the help of the kind scheduler at our local hospital. ) 

We watch stupid soothing TV

and

eat 

stir-fry

and try not to 

worry

The next morning its hard to get up.  If she wasn't here I would stay in bed.  I feel awful. Instead, we get up, borrow a car from a friend when ours won't start, and rush to the appointment, only arriving 10 minutes late, at the wrong place, and having to walk all the way thorough the hospital. By the time we get there, all my pills have clicked in and I've forgotten I was feeling bad. We wait.

They make her wait in the freezing room,

for a long time;

it turn out,

while 

I 

watch

remodeling

shows

on

TV

"Its Nothing"

We get all the way out to the Valet Parking before I realize we didn't make arrangements to pick up the report and the files tomorrow. 

( They send the report to the ordering physician, but unless you arrange to pick up the report, 

yourself, and fill out a little form, and bring along a written permission to be allowed to pick up her report, you don't get the report.)

"Its nothing" is meant to be a good diagnosis... 

but, really its not a good diagnosis, when you come to think  about it, 

because even though they don't know what it is, and hopefully they DO know what it isn't, 

it is clearly not nothing.

Maybe the report will be clearer.

Good News, Bad news

 My daughter found a lump in her breast.

That's the bad news.

I can hardly say it.  Then she found another.  She called, had it checked out at the health center -- she's in college -- and they said it was probably nothing and to have it looked at over Thanksgiving, some three weeks away. THREE WEEKS.  So even if its cystic, and not cancer, she has to think "maybe I have cancer" for three weeks!  She's freaked out, naturally, and (to state the obvious) more sensitized to this situation because of MY cancer...my death sentence.

Though, really, any woman would be worried, any of us, all of us suffer the ... the what? The feeling that our body holds an alien invader?  That we are mortal? That we are now engaged in a fight for our lives with the medical profession as our allies, as our saviors, as our tormentors, as a mediator between us and our future, our happiness, that we are no longer care-free, independent. ANY woman would feel that. It is a terrible feeling.

When I walk through the Women's Center at my Cancer hospital, I can see these worries etched on the faces of the women and men there.  I try to stride, purposefully, as though the bounce in my step can signal them: "Look, I'm doing OK.  You can be OK, too."  I have the energy to care, now.

I didn't used to.


So I remember how it felt to be so bone tired, to not care about being seen in public with hair un-combed, outfit mismatched but comfortable. I see the bravery in the make-up.  I told my daughter to be brave.  And she is.  Just getting out of bed, and going to class, and practice, and "trying not to worry", going through the motions of her day-to-day life and "trying not to worry".  But it is impossible not to worry.  My brilliant pain Doctor said that he could not necessarily relieve all my pain, but he COULD give me the information that would relieve my suffering. I understand him now. Because even if it all checks out OK for her, and is a common benign "mass", in some ways she will have spent three weeks suffering from cancer.

As for me....

CEA = 41.4 !!

Forty-one point four!

That's the good news.

From what I understand, the CEA is a specific chemical marker for colon cancer -- something the tumors actually give off that can be measured.  Less is better.  People with no cancer have practically none, and normal ranges from 0.1 to about three.

My CEA was 1450 at first, and has gone down, and then up...
and now down again.

Last time it was 88.  Now its 41.4.
That's still double digits, but coming  down, more and more.

I don't want my child on this cancer roller-coaster with me ... I'd give anything to have it not be so.

2012: One Year After Surgery

Moon through trees & a humid sky

It  has been just over a year since I had surgery to remove the tumors in my colon and on/in one of my ovaries. My recovery took time -- a visiting nurse came to change the bandages and packing on my slowly healing wound for weeks -- but rest, and reiki, and mushroom tonic and protein drinks and a whole food diet and, eventually, yoga all combined to help my recovery.  Everything had come out 'cleanly' and I was relieved to be cancer-free below the belly button (now somewhat askew with the new post-surgery belly topography) ...

By spring, I was enjoying a new sense of energy and well-being.

The summer found me with enough energy to garden ... I'd spend a couple hours on my "good" days tidying up the herb garden at my Community Supported Agriculture (CSA) farm ... digging, planting, wielding my hoe down the beds, regaining my fluency with the plants ... some days it was as much as I could do to pull some weeds, and then rest, stretched out on my chaise lounge in the shade.  Slowly, I could do more (there was always so much more to do!) and eventually I could put in a half day ... or more. I had a project, and a renewed sense of purpose.

I still had liver pain -- pain when eating, pain when evacuating, pain from bumps in the road, tenderness  for no particular reason, sometimes; but it seemed to be lessening: from every day to five days a week, to three days, then parts of days.  The balances tipped: now there were four good days and three "bad" -- but it was manageable, and seemed so much better than before.  I was tired, but not AS tired.  I was nauseous, but not AS nauseous.  I still had neuropathy, but I wasn't as cold-sensitive.  My handwriting had deteriorated but with intense concentration I could draw some, and do calligraphy. Who needs good handwriting, anyway?

I looked good.  I felt pretty good.

And then my tumors started to progress again.  6.2 cm to 8 cm for the big one, and the little ones were growing, too. I entered round two of the chemo wars.  I was offered a new protocol with new chemo agents -- a new set of side-effects -- and felt like shit. Swinging between diarrhea and constipation, burning pain, a new rhythm to my two-week chemo cycle, more "bad" days, lots of napping, days where a load of laundry was the sum total of my productive output. I hated my treatment.

The garden, now in full swing, made demands on my time and energy.  Even on the bad days, I'd drive up there and do a couple things -- and however reluctant I might have been when setting out, once I got there, I found moments of bliss, harmony, pain-free.  The plants grew. The garden took shape: long straight rows of sage and chives and lemon balm, st john's wort and hyssop. Sacred basil (tulsi) sprouted between the rows as volunteers, ruining the symmetry, but welcome none-the-less.

After four sessions (two months) I was able to get a CT scan.  The side effects were awful.

But the scans were good.  Great, even.  30% shrinkage of my 'big' tumor! My PA said that this report should go up on the refrigerator -- this being high praise from her -- and even my main Dr was dancing in the corridor.  He didn't need to see me, even, as he had "sick" people to tend to.  I was responding to the treatment.  I could continue the chemo protocol (until the side effects drove me crazy, anyway.)

So, it seems I've been granted another respite, albeit a difficult and painful one.  How many weeks of mostly bad days -- how many more weeks, does this pain package buy me? How can I judge if it is worth it? It is more than a little disconcerting to realize that if I drop dead tomorrow I'll still be considered a triumph of modern medicine. (Remember that my median time of survival was projected to be two years when I was first diagnosed in August of 2010)

I've had time for one more garden. One more harvest season.  One more balmy night with the moon arching through the sky, tracing its eternal path, wakened by the pain, and noticing how beautiful it is.
How very beautiful.

Stable & Unremarkable

5/23/12

Comparison study

3/12/12

CT Chest, abdomen, pelvis

with contrast.

"Stable size

of

 hepatic metastatic lesions"



"No new masses are identified...

no mediastinal abnormality...

Spleen, pancreas, adrenal glands, kidneys ...unremarkable...

Gallbladder is grossly unremarkable..."

8x10 in the backyard with Miley the wonderdog.

Things

are

looking

up.

Playing the Numbers

Love these meaningless early b&w photos

There is a whole
symbolism
 and
meaning
to
the
numbers
&
letters
associated
with
cancer .

A whole shorthand that
cancer survivors/victims/patients
use to outline the course of their
disease.  A number, sometimes, that can strike fear into a heart already overladen with fear, a number that seems like a promise, a threat, a reprieve, a strand of hope suspended amid the others on a page, a warning, a sentence.  In the chat rooms, (The Colon Club is my favorite), people identify themselves with a series of letters and numbers, communicating to each other, tracing  their trail through this treatment maze, their credentials. 

ac = before meals
ADL = activities of daily life (eating, dressing, showering, etc.)
Anti-angiogenesis - the process of stopping new blood vessels from forming
APR = Abdomino-Perineal Resection (abdominoperineal resection)
Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
BID = twice a day
CBC – Complete Blood Count – see expanded explanation below
CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer.
Cetuximab (Erbitux) - HELP!
CR = Complete response to chemotherapy
CR = Complete response to chemotherapy
CRC - colorectal cancer
DH - Dear Husband
DFS - disease free survival - used to describe the time that a patient is NED
DX - diagnosis
EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
hs = at bed time
HNPCC - a genetic condition which runs in families and indicates a predisposition to GI and OB-GYN cancers.
KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs
KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
LAR – Low Anterior Resection – surgery used for rectal cancer
LAR = low anterior resection
LN - Lymph node
mCRC - metastatic colorectal cancer
Met - metastasis
MRD - minimal residual disease
NED - no evidence of disease
NG tube (nasogastric tube)
OS - overall survival
Oxi - shorthand for Oxaliplatin
Panitumibab (Vectibix) - HELP!
pc = after meals
PD = Progressive disease while on chemotherapy
PD = Progressive disease while on chemotherapy
PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
PR = Partial response to chemotherapy
PR = Partial response to chemotherapy
PRN - 'pro ne rata' meaning when necessary
PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.
PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
PX - prognosis
QD = every day
QID = four times a day
QOD = every other day
RCa = rectal cancer
RFA - Radio Frequency Ablation
Temp = temporary, as in “temp ileo”
TID - three times a day
TNM – a system of staging cancer
TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.
TX - treatment
VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
XELIRI - Xeloda and Irinotecan
Xeloda (Capecitabine) - Oral 5-FU (pill form)
XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin

I am continually moved by the generosity of folks -- their need to share, to question, their ability to ask for help.  And here it comes.  From Seattle, Tennessee, Washington, New York, from Austrailia...the responses come tumbling in: the prayers, the wishes, the information, the gentle nudges towards facing the difficult, the impossible, the inevitable.  We create a community here, a web of people inadvertently caught, unexpectedly compromised, and with an instant membership in a club not of our choosing.

How does the shorthand not dehumanize us.? Progression-free survival. Performance status, Median time of survival.  We trace the paths of our blood chemistry: bilirubin up, white blood count down, and try to link that to how we FEEL, to how we are DOING, to how long we might have to live.  Our doctors and nurses are our translators -- we trust them to unravel these mysteries of our numbers, our blood, while knowing that they see through the surface of our disease, to the deep underlying truths. The shorthand protects them, too, from having to confront these truths too clearly. 

I have been in this Colon Club (dx: 2010) for 19 months, but some have been in this club for years: DX 2004, DX 1988.  These are the success stories, immortalized in the Colon Calendar. Quite a Pin-Up!  I look up the numbers to see what they could mean, and try to unravel the hidden mathematics of disease. CEA 463. I feel good, though.