prejudicial treatment

Lately my "Malignant Spots"(hereafter known as my MS) have been getting a bit sniffy. We had a little chat the other day.

"Oh fairsCaPe, what's wrong, why do you hate us so, what did we do?"they boo hoo-ed.

"Don't be lame!", says I. "You've metastasized!"

"Oh no, we never, not us..." they assured me.

"Really?" says I "Then would you mind explaining what you are doing in my LUNG ?"

"Oh, that.", says MS "We was on vacation. You know, just travelin' around... just a harmless little excursion..."

"Harmless? And how was I supposed to breathe properly while you set up housekeeping in there? You're going to have to go!"

"Oh boo hoo...sniff sniff... we can't go back...we only got a one way ticket... besides, we like it here...there's lots of oxygen...and we can hear things better when you talk and sing... you do have such a lovely voice fairsCaPe..."

"You're nothing but a bunch of nonpaying tenants as far as I'm concerned." says I.

"You know, hating us is like hating yourself...like hating the shape of your nose or the color of your skin." says MS.

"I could get a nose job and a tan, no problem." says I. "Listen, I've had it with you all...you'd better pack up your junk... the port goes in next week and then I start chemo and you'll all be kicked to the curb, out in the snow, by xmas eve."

I said this last bit in my most evil Landlord voice.

I've dealt with difficult tenants before...it's always wise to get professional help.

Biopsy Report

metastatic squamous cell carcinoma.

I wrote a whole post and just lost it a minute ago. I am so pissed.( not drunk, angry)

The whole idea of it , of course in much cuter language than this ,as original inspiration is always so much better than a rehash, is that I am recruiting bloggers to send negative thoughts to my various malignant spots.

In an effort to cover all the spots without overlap or ommission I will be assigning some spots to each of you.

PK-you get secondary neoplasm in my right colon.

Jin- I would like you to take the nodule in my right middle lung.

Fuff- anterior portion right apex of the lung
Fur- left mid base of the lung near the diaphragm

Caramaena- superior mediastinal lymph nodes

Eduardo- paratracheal lymph nodes

OhGreatOne-prevascular lymph nodes

EC- anterior mediastinal lymph nodes

hmmm- precarinal lymph nodes

RisingSlowly- subcarinal lymph nodes

It seems I have run out of regular readers before I have run out of malignant spots. This is the time to come forward and comment if you are out there. I need evil directed at my...

right hilar lymph nodes-

left hilar lymph nodes-

retroperitoneal lymph nodes-

paraaortic lymph nodes-

mesenteric lymph nodes-

precaval lymph nodes-

porta hepatis lymph nodes-

left common iliac lymph nodes-

a vague focus of activity within the anterior segment of the right hepatic lobe (liver)-

I will take the anterior left anterior abdominal wall mass as the pain from the biopsy is a constant reminder.

N, I have not forgotten you. N is a cancer nurse who I bumped into along the way. N,would you please look after my primary site (cervix). It is still in remission but as I will be distracted I would like you to direct your negative thoughts just to keep it in line.

Now all you guys have to do is think evil thoughts directed toward my malignant cells. Kind of like negative prayer. When you get really angry at something else, like bad drivers or stupid neighbors or george bush just direct that anger at your assigned malignant spot instead. The first time you yell out... I hate fairsCaPe's "assigned malignant spot"... you might get a few of your regular funny looks but then maybe you can recruit some new haters to the fray.

If nothing else this exercise can take the place of the frustration this terrible disease causes as we helplessly watch it consume people who are important to us.

And when it works, and I am cured and in complete remission we can write up a paper. And we can use the fairsCaPe technique to help others.

You have all been chosen for your ability to get a good mad up. Now's your chance to target your anger on a worthwhile cause. I expect to feel more pinpricks than a voodoo doll.

Get those evil mantras going.

Love to all,

fairsCaPe

(I will not be spellchecking this one -just going straight to post)

mission

something hides
resides
within me
a strange passenger
self
yet not self
a bad self
an alter ego
cellf
that is corrupting
taking over
every available
and unavailable
cellspace
not content
to live normally
where it belongs
insanely territorial
it practices
a crazy manifest destiny
a plan
a fighting for space
not its own
doesn't it realize
the success of its mission
will result
in the failure
the utter destruction
of us

I must fight
me
I must kill
these
parts of me
before these
parts of me
kill
all of me

no official results...

... however I was able to find out that the results have been available since Wednesday morning at 10am.

I chose my doctor because I understood that she had more knowledge about my disease than I did. I chose her because of her skill as a surgeon should my disease need manual removal. I chose her because of her ability to prescribe the appropriate chemotherapy. I chose her in spite of the fact that she did not accept my insurance and I had to pay (a quite hefty) out of network co pay(she has since become part of that network so my copay is small). I stayed with her even though her billing system was terrible - a computing programming nightmare. I stayed with her even though her partner's were less than pleasant. I stayed with her even though her manner has been quite brusk. Even though her responses to my physical complaints were less than sympathetic. Even though she told me before the biopsy that I would most likely be dead in one year even if I did another course of chemo.

I did not choose her to micromanage my life or emotional state. I did not choose her to be my god. I did not choose her because I thought she was smarter or better than me at knowing what was good for me.

I am concerned about the amount of emotional turmoil and stress I am experiencing due to this prolonged waiting. I am concerned that it is having a negative effect on my immune system. I am concerned about it affecting the outcome of my chances at recovery.

The doctors' service never called back yesterday.(my doctor is away for the holiday)

I can only assume that my doctor feels she must be the one to tell me what she predicted is true. That my biopsy shows metatasis. Quite frankly I have been doing a lot of internet etc. research and the sites that showed up as having high metabolic activity predictive of malignancy(on my PET/CAT scan) correlate with the usual sites of metastasis from cervical cancer.

I do not appreciate being kept in the dark. Not when the light is only a phone call away.

I have actually been waiting for these results since the original CAT scan when I was in the ER last month, before Bobby was admitted for his surgery. As I see it that is one month lost to the spread of this awful mess through my system. One month of sleepless nights and worried days. One month of living like a fooking (thanks for the spelling ed) drama queen. That is over now.

I know what I am dealing with. Nobody would have their staff hold back good news. I have to plan for more intervention. I have to plan for my family. I have to make sure that even if I lose this fight this time that everybody I leave behind will be as OK as possible. Fook denial. I'm ready to RUMBLE.

The idea of changing doctors at this point in time has occurred to me. I don't think that I will unless my doctor dumps me. I don't want to lose any more time. And as my mother used to say " better the devil you know than the devil you don't know." Of course, I will probably consider a second opinion , but I feel anxious to begin a course of therapy as soon as possible. Like yesterday. While I am still feeling healthy and strong , before any of these monsters become symptomatic.

I am concerned about the amount of stress this is causing for all of you guys. This is going to be tough. I will understand if some or even all of you disappear. Everyone has to take care of themselves. I will post as long as I can.

No Body Ever Skip Your Fooking Pap Smears!!!

hesitation

I actually hesitate to tell you how things are going because it stretches even the limits of my vast imagination.

My test was Tuesday at which time the doctor doing the test volunteered the information that the results would be ready on Wednesday. Due to the fact that the iv they placed was outside of my vien (after three sticks) and the enormous quantity of sedatives (versed) and pain medication (fentanyl) they were poring into me were not going into my circulation just into the subcutaneous tissue of my arm I had a great deal of pain during the procedure. Couple that with the fact that I am allergic to and could not take any locals and it is not a pretty picture at all. All during the test my arms were positioned straight up over my head and i was forbidden from moving AT ALL. They were practically accusing me of being a drug addict ( I have been taking vicodin in the week preceding the test as I have not been able to take my regular dose of naprosyn for my osteoarthritis (that I got from chemotherapy) at their direction. I was also accused of "fighting" the medication. The doctor was so angry and frustrated with me that he said I would have to go to the OR if I needed another procedure and I said FINE. After they were finished digging around at the "tumor" in my anterior abdominal wall I sat up and low and behold there was my arm at the bend of my elbow swollen with all the meds I had been "fighting". The iv was whipped out and I was sent to the recovery area and discharged. The meds started working in the car on the way home so I had a fairly comfortable night. I did not go see Bobby that day but as I was so comfy Steven did go.

I was up at about 4 am on Wednesday, worried about the results of the test. At 10 am I called my doctors office. The nurse started screaming at me about how I couldn't be calling every two hours yada yada yada... now this was my first phone call. The test had been completed at 10:30 the previous day. The doctor at the hospital told me 24 hours. The hospital's cytology website said 24 hours. I burst into tears for being yelled at and handed Steven the phone. The nurse APOLOGIZED to Steven for making me cry etc. She promised to call back. We decided this was not the news we should get on a cell phone in a nursing home hallway so Steven went to see Bobby and I stayed home to wait for the call. She called back at 4:00pm to tell me the results were not ready and that the office would be closing for the holiday until MONDAY. I did not see Bobby on Wednesday but as I said Steven was there much of the day.

We were supposed to have Thanksgiving Breakfast with #2 son and nicegirlfriend (who live with us). I was up at 4am. They came downstairs at 11:00 am. At 11:01 the phone rang. It was the PA at Bobby's nursing home. His G Tube was leaking all his formula and medications so they were sending him to the ER to be evaluated. We Ran out of the house. After 12 hours in the ER we were sent back with the diagnosis of poor care by the facility and over reaction . Yippee.

While we were in the ER I begged everybody to check and see if my results were ready. Because of NYS Hippa privacy laws nobody could even check. I proposed feigning chest pain to get admitted so they could check. Trust me I was close but I have a terrible character defect. I am nearly incapable of lying. Needless to say we left with a great deal of sympathy but no results. We got Bobby settled back into bed at the facility and I don't remember what time we got home but it was late.

I slept until 8 am today. It is almost 9. Very soon I will be pissing off some on call doctor trying to get my test results. I am nearly totally nuts at this point.

A poem while we wait

I generally publish my poetry on the other blogs. This is one I wrote during my initial period of chemo/radiation in 2004. I've been up since 4 am going nuts until I get the results back from the biopsy. As this is a holiday week I am hoping to hear today. I will be a blithering fiend if I have to wait until Monday. So what else is new???


my garden

some times
when gardening
I find
Bad Things
growing

I have to take them out

some times
good things
come out
with
The Bad Things

it's ok though

it just
makes more room
for
Better Things

test done

OUCH!

dirty deed done

...now I will be going straight to hell.

We placed Bobby in a long term care ventilator unit in a skilled nursing facility close to home yesterday. It is shiny and new and bright and clean and has wall oxygen and wall suction and finches and an aquarium and doctors and nurses and respiratory therapists and did I tell you it is shiny and new.

It is not home and he knows it.

I don't know if I will ever stop crying.

They won't let me touch him. "Facility Policy". Oh, I'm allowed to comb his hair. They wouldn't even let me stay in the room while they did his admission physical which is really stupid and terribly old fashioned. I am supposed to explain how I take care of him without showing them and then I have to leave the room and they get it all wrong and I come in and he is writhing in pain but that's Ok because I didn't touch him.

This is the place I fought to get him into (rather than one or two hours away).

Be careful what you wish for.

I am currently wishing for lymphoma because it seems to be the lesser of two evils verses metastatic cervical cancer.

Biopsy on the 21st...hopefully ,results by the end of next week. They have decided to go after the mass an my anterior abdominal wall rather than my paraortic lymph nodes as it will be easier to access. They have promised to knock me out for this.

Oh goody.

friends

lately
people
have been visiting
both on my blog
and in my home
it is nice
I see people
I like
making friends
with people
I like
I feel
like a link
in life's chain
no jokes folks
I'll be missing
soon enough

on and on (and on)

Bobby has had some more set backs. (new organisms in his blood)

I'm nuts. (as usual)

Steven is going crazy.(short trip)

The yard sale sucked. (we should have advertised)

The last two days have been glorious in terms of the weather. (sunny and warm)

Thank you all for hanging in there with us. (love to all)

warning-devastating bad news

The cat/pet indicates areas of hypermetabolic activity consistent with malignancy. I guess I go for a biopsy next. Where they are going to biopsy I don't know. They have so many spots to choose from...lymph nodes above and below the diaphragm... lung... colon... possibly liver...

Bobby is doing well. They took the foley out today. He is still having the poops. We have decided in light of my recent health dip and uncertain outcome to place him into a local nursing facility. We are hoping for a place nearby.

After the doctor's office called we went out to rake leaves and then we worked on cleaning out the attic. Yard sale this weekend. I have never had a yard sale. Wish me luck. Hey. Life goes on. I don't feel sick. What the heck?

waiting

it has been three weeks since they first saw trouble on a cat scan and i am so...i don't know how to explain how i feel...waiting...it is like the jury being out at the end of a trial...where they are deciding your life for you and you are simply powerless over the outcome...you both want the information...hoping for the best...but you can't ignore the dire predictions of the radiologist and the even more dire predictions of the oncologist...i am an information girl...this not knowing is getting my house very clean...i am sorting and shredding papers all the way back to the 1980's...dumping my anxiety out with the trash...i should get some news today...yard sale tomorrow...selling or giving away everything i don't love...unclogging my closets and my life...very cathartic...very therapeutic

on the Bobby front...off the zosyn coming off the vanco...starting to run temps again...how many possible foci for infection?...trach...chest...operative site...central line...multiple sticks...foley...not comfy...heart racing in the 120's...resp rate in the 60's when i arrived...suctioned him for a chestful of goop...cleaned his poor sore bottom...covered him up better he was shaking...a little more comfy by the time we left...i called an hour ago...he is sleeping and comfy...it is impossible to let go of managing his care...i think the nurse practitioner is ready to kill me if the cancer doesn't...i don't care...i just want my baby to be comfy...clean...warm...painfree...i am not looking for a miracle just some humanity

pet scan

a pet scan is kind of like a cat scan except much longer
it reminded me of the sensory deprivation tank in that movie "Altered States"
you lie on a comfy table/bed that slides into a long dark tube-like machine
you must keep your eyes closed and not move or speak for about a half hour
before the scan they check your blood sugar and inject you with radioactive glucose
you have to stay still and not talk
they make you drink barium sulfate...yummmm bariummmm...
i took a vicodan to help me stay still(my idea)so my back wouldn't hurt while i was flat
the worst part for me was not talking ( i am such a chatter box)
poor steven was a wreck
i should have given him one of my vicodans
we went to visit bobby upstairs after
he seemed pretty chipper but he has a raging case of the poops from antibiotics and his bottom

update

Thanks to all for your good wishes. Bobby still has a way to go but is more comfy and alert when we visit. I miss him.
I saw my oncologist, I go for a PET scan on the 6th. I vacillate between being numb and hysterical.