home care ... 5 star prison

End

2010-05-24T10:35:00.000-07:00

I'm more than a year late in posting this.
Last March Bobby had a tracheal-esophageal fistula which was inoperable--the third one
in his life. He was born with one--fixed by Dr Priebe at Stony Brook. The second one was where his trach balloon was--fixed by Drs Shindo & Scriven at Stony Brook. The third one was where his custom trach balloon was and he didn't have enough good tissue left to fix it. He was switched to palliative care & made comfortable until the end.
A fairsCaPe said, he was made out of 1 part wet tissue paper, 1 part stainless steel, and 1 part mischief.

Misguided Prosecution of nurses

2007-09-24T08:03:00.000-07:00

I just found out about this misdirection of justice
We were understandably busy in March and April. fairsCaPe would have had a lot to say about this if she had known.
Of the nurses being prosecuted, Claudine Gamiao, Jennifer Lampa, Rizza Maulion, Ma Theresa Ramos, and Ranier Sichon took care of Sonny Boy. They did a good job under difficult conditions. I will say more about this when I can control my anger better and after talking to a lawyer.

Roof Adventures seem to be over

2007-08-20T22:41:00.000-07:00

Back in March(?) a friend found us a good roofer.
This was very important, because a tenant had lots
of water coming through the ceiling in the small space
between her bed and closet. That (small) roof obviously
needed to be replaced. Then he fixed ours. Ours was
good and the old roofer re-sheetrocked and painted for free.

But the tenant still had a leak whenever there was a lot of
rain with the wind blowing towards that side of the house.
I followed the National Weather service hourly forecast graph
more closely (you can see the combination of wind velocity and
rain likelihood/amount). I sprayed water all over and nothing
came in. Stumped. The roofer came by and put some tar here
and there.

Then one weekend without rain she had a big leak. I figured it
can't be the roof anc called the plumber. The plumber looked at
the radiator in the second floor apt, pronounced it good, went
downstairs, cut a hole in the ceiling and said "There are no
pipes up there". Duh-it's an extension. He had mentioned when
upstairs that the air conditioner pan was full of water.

And that was the problem--if I sprayed water under the A/C on
the roof it came in the apartment. The roofer said the flashing was
probably bad and put down a big bead of tar along the wall-roof joint.
So far, so good, although there hasn't beed a storm to really test it.
And the house does need new siding, planned for next year, after the
taxes are paid.

SonnyBoy June 24, 2007

2007-08-01T09:43:00.001-07:00

The auxiliary at 5*P gave SonnyBoy a Yankee's cap for his birthday, because he has pictures of A-Rod, Jeter, and Rivera in his room. We watch both Yankees and Mets games together. His roommate and I are Mets fans. SonnyBoy seems to be interested most in the commentary, and my commentary on it.

Also, it's good to be cute--the staff make a little more effort so they can see this smile.

fairsCaPe and Sonny Boy

2007-08-01T09:35:00.000-07:00

December 22, 2006

hi

2007-02-15T09:19:00.000-08:00

thanks for all the wonderful good wishes

been a bit sick

hospitalized, etc

PET scan coming up on the 22nd

love to all,

fairsCaPe

a weak week...

2007-01-19T11:24:00.000-08:00

What an awful pun or something...

Bobby was not entirely well when I did visit. I wrote them a note and it took them a few more days to realize it and he had to go through some rough stuff but seems to be on the mend again.

I completed cycle two of chemo. I wake up feeling as if everything should be ok and within minutes or seconds even I realize I'm not . I still have not hit bottom but Steven is taking pretty good care of me so I am clean and well hydrated and well nourished but very weak. My back is bothering me - too much bedrest.

My problematic (read nonpaying) tenant is gone. We are pouring cash into the apt. to get it ready to be rented again. Fingers crossed.

I have started to write invitations to my Spring Equinox/5th Wedding Anniversary party. I am planning for flowers and cake and dinner. I need this party.

The roof is tarped, with plans for repair as soon as the weather rewarms. Living room unlivable covered in smelly plastic. I spend most of my time in bed with little excursions in here and in the kitchen.

I was surprised to see a little snow this morning which has all but disappeared by now.

Your kind words fill me with great energy, enough to post this mundane little entry,
wish I has something funny to say.

Oh, I do have a little ziploc baggie of hair on its way to risingslowly in japan to go to some temple or something, Steven had fill out a whole customs form at the post office.

I would just like to feel like me again.

my roof's got a hole in it...and i might...

2007-01-08T04:00:00.000-08:00

kill the roofer?

No. Then I would be in trouble. If one could imagine being in more trouble than I'm already in...

Yes the roofer has been back. He has succeeded through repeat visits in moving the leak from the window frame, to three feet into the room , to six feet into the room. It is currently pouring both outside and in and I am powerless over the weather. Due to all the pain meds I am a bit fuzzy on my usually rapid decision making processes. Still in all , killing the roofer does not seem to be the answer...the roof will still leak...it will scare off other roofers...my kharma will be impaired at a point where I will not have much time to fix it back up.

What to do???

Call my 2nd husband? He is in construction and his current wife does manage a construction office and her son does commercial roofs and they have said call us if you need help... still my ego might not be able to take it if they refused to help with this...

Call the local fight department chief/roofer as an emergency roof repair...

Call the really good, really expensive roofer I have used for my other property... he did have a quick look at it in the past...

I have to see my oncologist today... I believe I will cogitate on this until after I know what the game plan is from here out...

geez that's a lot of ellipses...

...

Thank you all for your hope and strength... even those of you who have been double dipping with multiple personas... ha...

Love to All,

fairsCaPe

ps. I need a shower, I guess I could just stand in the living room, I hear rainwater is great for the hair...

understanding fairsCaPe

2007-01-06T04:20:00.000-08:00

As my time remaining is limited I thought I would try to clarify fairsCaPe while I can.

Once upon a time there was a married lady whose husband got bonked on the head by 4 tons of concrete at work. The married lady tried very hard to keep this marriage together for her children. It didn't work. The married lady met a married man whose wife was "exploring" her sexuality with other ladies. His marriage wasn't working very well either.

These two were poets.

They met at poetry readings and workshops and went out with groups of other poets to a wonderful poetry venue called The Paris Cafe where they had more fun vertically than most people do horizontally. Eventually they explored the horizontal (blush).

The Paris Cafe closed . By now the two poets had set up a domestic partnership but as they were still technically married to the bonked man and the lesbian respectively they could not call their home a marriage so they anagramed "Paris Cafe" and became "fairsCaPe". They had poetry readings and workshops at their home and wrote profusely and self published "chap books" on the PC.

The lady part of fairsCaPe (me) felt that anything she wrote subsequent to meeting the man part (Steven) was partially attributable to both and so I feel I am not just me, I am fairsCaPe.

Just in case anyone was interested.

Sometimes I write in voices other than my own natural female voice. People are so used to poetry being so confessional these days that they infer that the voice of the poem is actually the voice of the poet and that I am a man.

Men do not get cervical cancer. I have metastatic cervical cancer. Maybe I will come back as a man next time, but, this time I am a woman.

Steven and I are married. It will be 5 years as of the spring equinox. We have never had an anniversary party and I would like to have one. Now that I can't take the one drug that might have kept me going for another year I guess I better plan a party for this equinox.

Please lend me your strength to get there.

Love to All,

fairsCaPe

here today , gone yesterday

2007-01-03T13:50:00.000-08:00

Needless to say, I will not be receiving Cisplatinum again.

I would say from the time they started the IV until I went unconscious it was about a minute and a half. I guess it was a couple of hours later when I woke up intubated on a vent unable to breathe turned on my side vomited and extubated myself. The people in the ER were not happy. It seem I had been very sick ( unresponsive, not breathing) when the ambulance got me there and they had had a hard time getting that darned tube in. After I vomited and got it out I felt much better, so they left it out. They sent me up to CCU and I had a nice nurse, Elsie. Elsie didn't give up until she got me my pain medicine. Good Elsie. Smart Elsie. Beautiful 68 year old Elsie. With experience comes Wisdom. Elsie the Wise.

All in all it was not a bad day. Outcome counts. I'm not dead. I can blog. Tomorrow is another day. Fiddle dee dee...

she's no angel

2006-12-31T01:49:00.000-08:00

Pictured below is #2 son's daughter Bailey. He saved all his money from Birthday's and Xmas's and working and purchased her for $500.00 when he was 15. HE REALLY WANTED HER! She is of that calm and composed breed known as Jack Russell Terrorists. She spent her first five years running away from home and chewing everything up while she was here. I am firmly convinced that we really didn't need to pay rewards to get her back . I think we could have worked it like "The Ransom of Redchief". After one night of this little sweetie chewing everything you own most people probably would have paid us to take her back.

Due to Bailey's gastronomique taste for fine furniture and finer furnishings she spent much of her early years crated. This may seem unkind, however, we always kept her right next to us and over time she did "relax". Now at the mellow old age of 10 she is fairly trustworthy as long as no toys are around. Toys seem to incite her to bad practices. She saw a ball a week ago and ripped up a bookcase trying to get to it. She will shred a roll of paper towels in a minute and will eat anything small enough to lick up off the floor. Dead or Alive.

And then there are the "Accidents". Frankly, I don't think peeing or pooping on someone in bed, whilst they sleep, is an "Accident", but, then, she is not my dog.

Jack Russells are the Houdinis of the doggie realm. Bailey could chew though any collar or leash and disappear in the wink of any eye. We were forced to use a choke chain and steel leash. Once at the vets, the doctor put a "temporary" collar on her and had his assistant take her out for a urine specimen. She hopped into the air, flipped off the collar and was gone for three days. We put signs up everywhere and finally some one found her and called us. The vet charged $350.00 to my credit card for the time spent by his staff looking for her! I think we paid another $300.00 in reward money. She is truly a high maintenance b*tch.

snow angel

2006-12-30T18:27:00.000-08:00

Yay Neutrophils

2006-12-29T16:12:00.000-08:00

WE DID IT !

So I need a minimum of 2500 neutrophils to get chemo. OK. So last Fridays count turned out to be 233. OK. So they cancel chemo on Tuesday. OK. So you guys start cheering for my Neutrophils. OK. So today I get the blood work repeated and they send it STAT so they get the results right away today. OK. So guess what today's count is ? 3021 !!!! Can you believe it? I am ecstatic! The nurse said the results were terrific! Thanks everybody! You guys are the best! What a team! Hurray fairsCaPe's blog's commenters! You are all entitled to an extra dessert tonight!

Love to All,

fairsCaPe

cara helped me post my hair

2006-12-28T07:22:00.000-08:00

No neutrophils no chemo

2006-12-26T18:55:00.000-08:00

So the good news is I didn't have to have chemo today.

The bad news is My Neutrophil count was too low for them to give me chemo.

I guess they got jealous of my platelets having their own cheering section.

The better news is that my platelets have doubled in the past week. Doubled. Thanks to everyone cheering on my platelets. Please would you now cheer on my neutrophils. We actually need them to increase to 5 times what they are now so I can do chemo again next week.

sample cheer:

Neutrophils
You fill
the bill
stand up
and fight
with all
your might

yay Neutrophils!

Thanks to everyone for all your good wishes and advice. I don't know what I'd do without you guys. You are all so special to me. Your visits make this exile bearable. Visiting your blogs is the most fun you can have without risking catching something.

Cara honey I am a complete computard I scan the photo, I see it . I give it a file name. I copy and cut it. I click on the icon. I do what I'm told and voila... the stupid thing posts the picture and all I see on the blog is a frame. I got to get Hubby to help but I have him doing so much right now I can't ask just yet.

And Dawn, chemo patient it is. The cancer doesn't even let me know it is there, so, I don't feel like a cancer patient. I feel the chemo tearing me up, so I call myself a chemo patient. My friend got her mother a T-shirt that said;

"I survived Breast cancer".

What she wanted was a shirt that said;

" I survived Breast cancer Therapy".

Sound like you are a survivor too.

So I've been tidying and eating and napping. Yawn. ZZZZZZZ......

Love to All,

fairsCaPe

Hair today gone tomorrow

2006-12-25T01:30:00.000-08:00

I wish I could figure out this picture posting deal. Yesterday #2 son took some photos of my waist length hair. It has already started slipping out each time I comb it. I figure I've lost at least 30% of my volume. Still. I can't decide whether to chop it all off ( sounds rash) or trim it (sounds sensible) or just let it go slowly and see what happens ( sounds typically me). It doesn't look too bad yet just a little thin and fringy compared to usual.

So what is the problem? I start crying every time I comb my hair. Geeze I sound vain and stupid don't I ? It is just that I always wanted really long hair and it finally got around to cooperating after my first chemo and at least 100 three foot long hairs come out in my hands every time and it makes my sad and reminds me I'm "sick" even when I feel OK.

Also, I don't want to look "sick" and have people pitying me and asking dumb questions and telling me stories about their relative ( now dead) whose hair fell out on chemo and never grew back before they died, etc. People out there... we know you need compassion for the loss of your loved one ,but, asking for it from a chemo patient is really asking a lot. A Whole Lot...Argh!

OK , fairsCaPe, you have your Pollyanna reputation to consider here. Try not to go nuts on well meaning(?) strangers...

On the positive side, it is an outward sign that the chemo is infusing throughout my system. Also, My "grannybun" hairdo is a few generations out of style no matter how comfy I find it. And, if I keep my wits about me as I comb I can put the hair out with the bird food... birds love to use hair in their nest.

I just worry about shedding long strands and someone tripping over them... fiddle, dee, dee, tomorrow is another day... and I start chemo... time to concentrate evil thoughts on the buggers and positive thoughts on the good bits. I will post when I can.

Good Tidings

2006-12-23T02:05:00.000-08:00

Things have been pretty good.

The folks at the nursing home did some sort of sheet count on Bobby and suddenly it is medically necessary for him to have his Texas catheter back on, Hurray! With an intake of over 4 litres/quarts per day I should have realized it would only be a matter of time, Hurray! They are not actually using his catheters, they are using their catheters, however, they are using a different brand of drainage bag that drains better, Hurray! I have not actually seen his bottom, but, supposedly it is only red and the skin is not broken open, Hurray! I have always said "every problem has a solution". Some times you just have to let people figure things out for themselves. I bet the nurses aides raised hell. He had to be completely changed, sheets and all, at least 10 times per day. Apparently uneducated semi skilled workers know more than physicians, text book writers and caring professional family members. Who would have thunk it? Problem solved. Hurray Ladies!

We had a lovely Solstice. The weather was super-uncharacteristically warm and the sun was bright and beautiful. The days will be longer now, I have hardly noticed their shortening due to all the wonderful warm weather of late. Hurray Sun!

We were able to get the roof tarped and the ceiling painted in the dining room. It is raining right now and so far...so good...(keeping all my fingers and toes crossed). As the dining room is now habitable we were actually able to get together with #2son, lovely girlfriend and one of my dearest friends for dinner. Steven picked up some nice Italian food on the way home from visiting Bobby. We put it on real plates and we Dined. Hurray fettucini alfredo and portabello mushrooms!

Aside from a possible reaction to Celebrex ( I do have a history of childhood allergy to sulfa) all my meds and concoctions are working and aside from some breaks here and there I have been comfy. Hurray medications and home remedies !

All my catalogue orders have arrived in time for the Holidays. Hurray Catalogues!

The holes in the ceiling in the den, resulting from the removal of two "can" light fixtures, have been closed. I will not mention how many years they have been staring at me like two unearthly eyeballess eyes. Less than 10. Hurray for closure!

If this is my last Holiday (shhh, please let me go on) if it is, I could not have asked for better. Between the love and support here at home and the love and support of all you guys I feel truly blessed. Hurray Blessings!

Love to All,

fairsCaPe

guess what?

2006-12-19T16:40:00.000-08:00

i took a bathie all by myself with nobody home

i am a big girl now!

truthfully

i can not remember the last time i was alone

i have been surrounded for most of my life, maybe, all of my life

weird huh?

by the way, i have actually posted poetry over on fairsCaPe if you are so inclined

Bobby has been low key "happy" when i have seen him lately, Steven visits every day even if i ain't got it

it is lovely and buoying (sp?) to see so many visitors old and new, I will try to return visit asap

i have a new request

it seems my platelets (the buggers) need a cheering section all their own
while i am not dangerous i am behind schedule and could use a bit of a boost

i am told my potassium is low also however i have been referred to the "Banana Cure"

love to all

fairsCaPe

updates

2006-12-14T02:16:00.000-08:00

thanks to all for the input and for hanging in there

meeting went "eh" with the lawyer ... it was wonderful having him there ... I feel it tempered a lot of the remarks that they were planning... what an evil ghoulish crew

We saw my radiation oncologist yesterday morning and followed the ambulance to Bobby's surgeon in the afternoon... needless to say.. I'd be pooped even without chemo... these are two hour or more round trips for the transport alone.

Oncologist very warm and supportive as usual... will review my most recent scans and follow up after next scan and work with chemo md on possible addition of radiation to any recalcitrant areas

Bobby has yet another new g tube... I hope they like this one

his pants are almost perpetually wet... i am very concerned about the removal of the texas catheter... I haven't seen his butt in days... he is always flat on his back which is another huge concern

in typical fairsCaPe insanity I have undertaken to redecorate the bathroom so that it is more soothing... I spend a lot of time in there and I need to be soothed

we will be seeing our regular MD today,,, Steven is in for a long overdue check up

i wish i had time to tidy up the other blogs... soon

nausea

2006-12-10T14:50:00.000-08:00

wow

the topotecan is awful

i don't remember the cisplatin alone being quite so tough

i'm trying lots of stuff

Any suggestions?

Bobby is now perpetually soaking wet... my heart is breaking... I have not been well enough to leave the house to go see him... I only hope I can make it in the morning

love to all

fairsCaPe

what's next...

2006-12-08T14:50:00.000-08:00

Ok

so Bobby stayed on a stretcher in the ER all night with Steven and didn't get turned and didn't get fed and didn't get his meds on time and they searched an entire 20 story hospital for the kind of Gtube this nursing home doctor wants and they couldn't find one so they sent him back with the same tube in place in other words a totally wasted visit... your tax dollars at work

my poor son has lost over 30 pounds in the last 6 weeks from not being fed properly and this is while he is trying to heal a surgical abdominal wound

Steven got home around 2 or 3 am i got some sleep before and some more after

we had an appointment at the lung cancer center today and basically they don't see any point in doing anything besides what my gynoncologist is doing - chemo

after that appointment i went for chemo again today aloxi/decadron/topotecan

after that we went to the NH to see Bobby

these folks have decided not to use the Texas Catheter anymore they are just going to let him pee his pants instead so he will be laying in cold wet diapers all the time

He has an intake of 4000cc per day with all the unneccesary flushes they give him

They only check him once or twice a shift He pees 1000 at a time The pee is going to be running off the bed on to the floor I hope the farking (thanks ed) doctor slips and falls on her Farking posterior /rolls over on her farking face and Drowns in his Farking pee. Now isn't that a pretty picture... yessssssss... I told you all I was going straight to hell because I am so evil. Just an aside... she has the worst haircut I have ever seen... It looks like a kindergartener on crack attacked her with plastic scissors.

one of the nonenglish speaking nurses brought out Bobby's empty liquid vitamin bottle at like 4pm so we had to come home and I am staying home and steven is going back

i am pretty tired

i can feel all your little vodoo pinpricks all day and all night

keep up the "bad" work

there are still a few spots up for adoption go back a few entries and check

don't waste any negative energy that you could be directing at those nasty little malignant spots

no spell check tonight - straight to post

love to all

fairsCaPe

ups and downs

2006-12-07T15:16:00.000-08:00

i'm really tired

steven didn't get home until 2 am

the surgeon had seen bobby in the er
put in another gtube and instilled contrast material and xrayed

they sent him back to the nursing home in the middle of the night

steven slept this morning

i was up at six

my friend drove me to chemo so steven could sleep

I called the social worker to tell her we would not make the meeting

THE NURSING HOME DOCTOR CALLED after the meetingTO SAY SHE DID NOT LIKE THE TUBE THE SURGEON PUT IN LAST NIGHT

SHE TOLD ME SHE WAS SENDING HIM BACK TO THE ER

I TOLD HER I WAS IN THE MIDDLE OF GETTING CISPLATIN AND TOPOTECAN

SHE SAID WHEN WILL YOU BE DONE I CHECKED AND SAID 4:30PM

WE GOT TO THE HURSING HOME AT 4:45PM AND THE AMBULANCE WAS ALREADY THERE (OOPS CAPS)

I had spoken to Bobby's surgeon during the day, he was in the OR between cases. He tried to call the Nursing Home doctor but all he got was an answering machine.

I had a mini panic attack in the Nursing home because of the way I found Bobby all twisted in the bed with his head flat and the nurse said " you should have come to OUR MEETING" all bitchy like.

I had Steven take me part way home and we met my girldriend and steven left for the hospital ER and my girfriend took me home and then she went to work.

#2 son came home and helped me with supper (I can't lift)

I haven't heard from steven or the hospital aand I'm afraid to call.

Why are people so awful? I have been a healthcare professional, a Registered Nurse, since 1973. I had one "law" i always enforced.

Do unto others the way you would have others do unto you.

It worked.

Love to all,

fairsCaPe

It's almost 8pm.

Have I died and gone to hell?

2006-12-06T16:50:00.000-08:00

I was up at 4am today. I showered and was at the hospital by 6am. I signed my name 2 or 3 times and waited 2 or 3 hours to be taken to the OR. The nurse anesthetist ( who I really like) stuck me 5 or 6 times to get an IV started. The put me out and had to use general anesthesia to put the port in because of all my allergies. I woke up in a lot of pain because they usually shoot the whole area up with locals but I'm allergic to every "caine" medication I've ever been given so the operative site HURT. They didn't have the pain medication I take in the recovery room so I had to wait an hour or so while the nurse ran down to the Pharmacy to get some. Then they took me back to the staging area. Then I got dressed to go home. Then I started coughing up blood. Then they sent me home.

Steven went to the Pharmacy to get me the Perscriptions I needed. After he got me some food he went to see Bobby.

Two days ago when we went to see Bobby he was positioned so poorly we complained.

Yesterday, to punish us for complaining they shoved all of the pubic hair aroung the base of his penis into the Texas (condom) urinary catheter so that it was pulling on him for I don't know how long. I freaked out . I had to cut his pubic hair to get the catheter off of him. They were screaming at me the whole time because they have those rules that I am not allowed to touch him. Even though they don't know what they are doing, even though I have an RN, even though I have been taking care of him for 22 and a half years, even though in addition to being his mother I am the Court Appointed Guardian of his Person and Property.

Today when Steven got there the doors were closed and they were running around like crazy people and it turns out some farking abusive insane farking NAZI had PULLED OUT HIS GASTROSTOMY TUBE. Solid anchor, sutures and all. Blood everywhere...

Bobby is on his way to the ER via ambulance. Steven is taking the car. I can't be there. We have been up since 4am. I start chemo in the morning. I am still coughing up blood. My girlfriend will be taking me.

Have I died and gone to hell? This is un-farking-believable.

Forgive me for not spellchecking. I am shaking with rage and fear and pain. I am all alone waiting for Steven to call. I have been crying so much I can hardly breathe. It's like the twilight zone. Just being able to tell you guys helps. Thanks.

Love to all,

fairsCaPe

Colonel PK the Colon Cleanser

2006-12-04T03:01:00.000-08:00

Colonoscopy yesterday. Everything clear up to my appendix except for one little polyp which the doctor biopsied and obliterated with electrocautery. She didn't think it looked malignant but she sent it to be checked just for sure. Because of how it looked on the PET/CAT scan and everything.

PK was in charge of that little booger. Thanks PK. I chose you for that spot because of your army background. You have seen the enemy on its way. I still need you on sentry duty until the results come back. Guarding the perimeter and all that. Getting secrets from the enemy. Trust me, after what I did to the little nasty thing during the prep (waterboarding?) and what the doctor did yesterday it'll talk for sure. And if it turns out to be more trouble we'll just hit it with some chemical warfare.

Isn't my doctor great? She is young and hip (does anyone say hip anymore?) and fit and pretty and she has weekend hours because she understands the needs of the average person who needs to get this sort of thing done on the weekend instead of during the workweek. And she loves animals... she has animal rights stuff all over the place and her whole office is decorated in kitties. Yup, Kitties. Kitty pictures, statues, candles, doorhooks, tissue holders... wait a minute... you all think I'm still high on the medications they zapped me with... seriously, if it comes with a kitty on it ...then she's got it. Instead of all the doctor stuff on her bookcases and walls she's got kitties. And she wrote a book and she has a website. And she gives you juice and fruit and a cookie when you're done. Not that I felt like it this time. The damn needle came out of my vien too early again and I "experienced" some "discomfort" during the end of the procedure, but, I'm ok now and the damn thing is out.

I really am going to need that port. I am tired of being stuck over and again and having them lose IV's half way through things. So PK dear, since you did so well on Private Polyp would you please stand guard over things in General on Wednesday while I'm asleep for the port?

Thanks to all of you guys. You have no idea how good it makes me feel knowing you are out there hating the little bits of me that have gone astray. I feel stronger every day.

Oh, by the way... the website for my doctor is... www.liverdisease.com...( this is not a link I never learned how to do that)... and if you scroll down to the bottom and click on smartcats you can see pictures of her real cats and then maybe you'll believe me...

love,

fairsCaPe

prejudicial treatment

2006-11-29T04:08:00.000-08:00

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

2006-11-28T06:45:00.000-08:00

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

2006-11-26T07:49:00.000-08:00

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...

2006-11-25T02:23:00.000-08:00

... 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

2006-11-24T05:26:00.000-08:00

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

2006-11-22T06:10:00.000-08:00

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

2006-11-21T13:14:00.000-08:00

OUCH!

dirty deed done

2006-11-18T04:21:00.000-08:00

...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

2006-11-16T05:08:00.000-08:00

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)

2006-11-11T13:19:00.000-08:00

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

2006-11-09T20:31:00.000-08:00

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

2006-11-09T02:48:00.000-08:00

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

2006-11-07T07:51:00.000-08:00

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

2006-11-03T02:02:00.000-08:00

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.

Post op

2006-10-25T17:21:00.000-07:00

Bobby had his surgery yesterday. He is on morphine around the clock. Things are not going perfectly but he seems oblivious to the pain. This will take some time. Thanks to all.

err...

2006-10-22T04:06:00.000-07:00

Oh well...

Back to the ER. Not for me this time. Bobby is having another little glitch. A new fistula has formed next to his Gtube, over the course of a couple days it went from being a little red dot, to a pimple, to a pus pimple, to a draining pimple, and then just when we thought it was going to start healing it opened up and everything we put in his gtube ( food water meds) came Out. Right away. After many phone calls to his various MD's we packed up and presented ourselves in full entourage in the ER. Since we take such good care of him he looked great and not like some half dead dish rag (that's Me), so we had to lobby for admission for the next 8 hours. I stood my ground and he is in the ICU. He hadn't peed for 26 hours so they finally put a foley in him at 2 am and only got 200cc of pee. I knew he was too dry even if is blood work was good. (normal people make at least 30 cc of pee per hour).

Thanks for all the good wishes. I just can't post an individual response any more. I will visit those of you who visit here when I can. I will try to update. I have few friends in the nonblog world and I appreciate you all very much.

A trip to the ER

2006-10-19T06:25:00.000-07:00

OH well...

My body has been mean to me even though I have tried to be nice to it.

It is hard to visit the ER by yourself. Especially if your hair is messy. Always comb your hair before you go. People will treat you better. Always take an advocate other wise you will need to bring your own luxuries, You know like pillows or blankets. Unless you have someone with you you will need to yell loudly; not try to be quiet and sniffle to yourself if you have pain or nausea. Once you throw up 4 liters of fluid at once people will take you a bit more seriously and you will get what you need so don't suppress just let fly. Demand lab work and xrays. You have your rights! Don't be surprised if things actually turn out to be wrong. Be prepared to leave rapidly when they decide it is time for you to go even if no one can pick you up for a few or more hours.And remember;Have fun!

Time

2006-10-15T11:16:00.000-07:00

It's amazing how much time goes by while I do nothing. I begin to get a sense of what a waste of time just sitting here is and then, not wanting to ,or, not being able to comprehend it I parcel it out in little ritualized bundles that I can manage. I will do my morning haiku contest. Then I will have my yogurt. Then I will do a task for Bobby, like turning or suctioning or starting his feeding or giving his meds. I check the phone for messages. Each time I sit down I remember the thing /things I forgot do do. Never remember till I sit. Never remember when I get up again. When I get hungry I have my cheese sandwich and some green tea. Then it is a task for Bobby , check phone, check mail, check email ,look at blogs. read, crossword puzzle. Potty. Everything is nothing. Everything is fill up the hours that are slipping through my fingers like mercury. Everything is designed to keep the status quo going. There is never any advancement. It is all so static and so boring. I miss being able to just get up and go. I miss being able to sleep without pain or worry. I miss the sun and the air. I miss feeling decent. I miss bathing regularly. I miss looking nice. I miss my life with Steven. I look at Bobby awake or asleep across the room in his bed. Looking out the window. Watching TV. Does he have any idea that all this will end one day? Has he ever had any real understanding of life or death? Is he happy? Could we do anything to make him happier? He seems amused most of the time. And me ? Am I amused most of the time? Donald Trump has his name on buildings all around the world. Does he need to do this to know he is alive ? I watch the sat monitor and I know Bobby is alive. Some times when he is asleep in the dim of night I need to have those numbers. The vent would just keep on puffing away if his heart stopped. Eventually he would turn blue but it would be hard to tell in the dim. I guess he will pee if his heart stops. Poo too. It might take a while to notice. Will anyone notice if I die just sitting here? How will they be able to tell?

what's up

2006-10-05T10:09:00.000-07:00

Well, how are you all doing? We are just sort of coasting here.

I called #2 son yesterday because he was late getting home. I asked if they had kept him in detention for being bad. ( This is what I call overtime at his first job out of college). Imagine my surprise to hear he was at a car dealership to pick up his new car. The little bugger saved his money, got a loan and arranged for insurance all by himself. I am proud. What did he buy? A nice Honda Hybrid like Mommy? A pick up like Dad? What does the young urban male go for today? A Subaru Impreza Wrx Sti Limited Edition. It's one of 800. One of 400 produced in Urban Gray Metallic. Zero to 60 in under 5 seconds. It is a small silver ROCKETSHIP. I got first ride. ZOOM!!! Well as zoom as you can go in the neighborhood without putting the tach over 4 grand until the engine is broken in... It even had a little strip of metal on the dashboard that says what number out of 800 it is. Cool!

#1 son- or- Life is Strange

2006-09-29T05:18:00.000-07:00

I haven't had much to say about #1 son.

#1 son dated a girl who while bright and average looking was quite...um...well...odd. But then #1 son while quite bright and average looking was somewhat...well... odd also. Make no mistake, I love him dearly but he took after his father, #1 husband who was while bright...etc,well you get the picture. #1 son did not get along with husband #2 and while most people have turmoil during their teens I can only describe #1 sons teenage years as The Days of Anguish. While there were no overt acts of homicide or suicide there was much discussion both in front of, and behind my back. I feared we might make the tabloid headlines. As #2 husband quietly exited and #3 Hubby-to-be entered the picture Things seemed to simmer down. #1 son was a late bloomer and when Odd Girlfriend entered the picture we were all initially quite happy and relieved. Initially. Odd Girlfriend it seemed had even Odder Parents who she endlessly complained about and before we knew it Odd Girlfriend was basically living with us. I watched in amusement and then horror as Odd Girlfriend systematically stripped #1 son of all his friends and social contacts. We waited for these friendships to be replaced by friends of Odd Girlfriend but it turned out she had no friends of her own. Then her mother died. After she finished off the last of #1 son's friendships she went to work on us. It was subtle at first but then her behaviors and lies became more overt. We waited for #1 son to see the light but it turned out love is truly blind. Eventually, it became a situation of him believing her or me and he chose to leave with her. Despite repeated attempts he spurned my gestures at contact and reconciliation. I finally gave up. Heartbroken. Ruined.

When it became clear that my mother was about to die three years ago I had #2 son call #1 son to invite him for a last visit. He had not seen his grandmother for ages and as she had ADORED him I felt it would be a gift to her if we could get him to come and visit. He did. Once. She died two months later (I hospiced her at home). Imagine my surprise when he showed up at her funeral with Odd Girlfriend (now Odd Wife-No I did not get invited to that wedding). Odd Wife cried Inconsolably throughout her visit. Life is strange.

After my mother died I found out I had cancer. I had a number of conversations with #1 son, but, one day I asked him for help with some thing and he refused to talk to me ever after. Then when Sonnyboy was really sick a year ago he came and sat with us while he was in the OR for about 3 hours . ( I didn't mention Both Odd son and Odd wife are both RNs in the OR where Sonnyboy and I wind up now and then). Life is Strange.

Last May #2 son's Lovely Girlfriend had a combination Birthday/Graduation Party. #1 son and Odd Wife were there. I spoke to them but they didn't respond. I don't get it. He can talk to me for hours when she is not around but when she is I'm shit? How many times can a son break his mother's heart? I feel sorry for them. Life Is Strange.

Is Halloween the new Xmas?

2006-09-18T09:45:00.000-07:00

Well they have done every thing possible to ruin one perfectly good holiday, why not mess up another? The stores and home shopping catalogs have gone crazy with Halloween decorations. Orange and black lights and giant sized inflatables fill the neighborhood. No one makes their own costumes. People throw elaborate parties. Hardly anyone goes trick or treating anymore. I know its just a matter of time before we all start sending Halloween cards and buying each other Halloween gifts. Imagine Halloween office parties with Halloween grab bags. Formal Halloween family dinners with relatives flying in from out of town . Halloween musack at the Mall. Oh, The Horror.

or not...

2006-09-11T04:21:00.000-07:00

Oh well back to the drawing board.

blogger beta

2006-09-10T15:43:00.000-07:00

Before I make the switch I will wait for them to fix the problems. The biggest problem for me is that I can't post comments to blogs that have made the switch. I understand that beta bloggers can't post to me now as I have not changed. There has to be a solution... all the smartipants google people are working on it. I got it!

hooooray

2006-09-08T12:56:00.000-07:00

Just back from the oncologist and I get an A on my report card. Now I have to wait for lab work but everything looks good. I am half way to my 5 year survival. I have to see the radiation oncologist in December but I don't have to see today's doctor until next June. Hoooooray!!!!

Ernesto sneezes

2006-09-03T06:39:00.000-07:00

We got a lot of wind and a bit of rain out of this one. I just hope it doesn't make everyone too complacent when the next one approaches. Blew down a few leaves and a couple of branches and howled a bit in the night. Power went off momentarily. Set off all the alarms but Sonnyboy was in the middle of one of his big sleeps and he was not disturbed. We just had to reset things and turn a few things back on and that was that.

I am sleeping very light these days. Cooking smells wake me up. Talking wakes me up. As usual pain wakes me up and of course my bladder wakes me up. TMI? Oh well... Getting back to sleep is difficult. I get up and wander around sometimes like an old dog guarding my family. I turn off lights and make sure doors are locked. Tidy up things here and there and once satisfied all is right with Hubby and Sonnyboy drift back to my room, trample the weeds down by going around in a circle a few times before I lay down and (hopefully) return to sleep.

Electrical shock

2006-08-31T04:39:00.000-07:00

This morning I woke up shivering. I turned on out local traffic and weather channel to find out it is 59 degrees out (chilly). Great. The a/c is off and now we have to keep the windows closed . My electricity bill arrived yesterday covering the last two months when it was about 100 degrees (super hot) for a few weeks . We managed to use over 4600 kilowatts (a personal record) which cost us more than $1000.00 (a lot of money). We are on a budget plan with our utility company so my electric bill will go from around $300.00 per month to 670.00 per month until we are caught up. I guess we will be walking around in the dark for a while. It stopped raining yesterday for a while but there is more rain coming as Ernesto heads north. I detest hurricane season. I feel compelled to watch the news more and the fearmongers on CNN really get to me. I suppose it is good on some level to remain informed, especially with Sonnyboy being so electrically dependent, but I get all riled up. In turn I guess I rile everyone else up. Oh well! Hubby was using the laptop right before me and left a window open that has a graphic of lightening striking on the upper left corner of my screen. Seems apropos.

Birds of a feather...

2006-08-29T13:01:00.000-07:00

may flock together under ordinary circumstances but not always. Lately I have seen a variety of different birds flocking together on my front lawn. There are mourning doves, robins, orchard orioles, starlings, mockingbirds, finches, sparrows, cowbirds, woodpeckers and a number of other birds I have had trouble identifying even with my trusty copy of Peterson's Guide. This is unusual. In addition to seeing so many different kinds of birds all out there at the same time they are out there in the pouring rain. It has been raining for days. It may be that the worms have all come up to the surface to escape drowning. It may be that some specie of insect has hatched. I don't spray poisons on the lawn so things do live out there. I do not see birds across the street where they do poison. It has all been very entertaining. I am quite a cheap date aren't I?

Blogger has eaten my most recent attempt at publishing. If you are reading this I succeeded this time.

seeking perfection in an imperfect world

2006-08-18T16:06:00.000-07:00

Don't even try. Something will likely go SPRONG in your head. Life goes on and on. If I were to stay pissed off at everyone who has pissed me off in the last day or two I would be in a permanent state of pissoffedness. This could seriously interfere with any plans I might have for future sainthood,in addition to the fact that I'm not a Catholic,have never been involved in any miracles and have made Santa's naughty list on more than one occasion. Great, Hubby just spilled ketchup on me. SPRONG.

Sonnyboy is just peachy these days. He has taken on a new hobby. Sonnyboy? A hobby? Do tell! Sonnyboy is perfecting the 2 day week. How does one do this ? One does this by being asleep twice and being awake twice in a week. Like this...

awake = 45 hours
asleep= 24 hours
awake = 76 hours
asleep= 23 hours

I am peachy too. I have a new hobby. I travel. No, not time travel. No, not astral projection. No, I just go to google night sky map. It's so purdy with all them bright spots and then I click on day map. Then I carefully zoom in and maneuver and presti er presto I have traveled to every house I have lived in as an adult. I have been to Stonehenge. The Panama Canal. The mouth of the Amazon And today I finally zeroed in on the Pyramids at Giza. I love my arm chair travel. Where to next?

just a thought

2006-08-13T10:53:00.000-07:00

I'm not saying women are more industrious than men but...

1. I have never seen a riding vacuum cleaner.

2. I have never seen a Laz-y-girl chair.

3. I have never seen an ad for a Guy Friday.

Hmmm...

my lap tops back...

2006-08-11T04:33:00.000-07:00

and you're gonna be in trouble...

not really, but, it sounded funny to me.

While this blog has mainly been about the trials and tribulations of our own personal world, it is difficult not to notice or make mention of what is going on outside our doors. As you are all thinking feeling people who come to visit here and to share I do not wish to burden you with news that is unavoidable. I try to stay away from CNN etc. but, as a thinking , feeling person there are times when I feel I need information. I then hurry back to the relative oblivion offered by Bloggingland to steady my nerves. It may seem I am callous if I choose not to comment on the evil being done but I feel so powerless over it that I just can not. I will try to keep this blog as apolitical as possible and will confine any political comments to my Evil Influences blog, if at all. I'm overwhelmed by recent events. If I come to visit your blog and you choose to comment on world events I will no longer join in any political conversations as they only increase my growing sense of ill ease and they wear me out. It will have to be fairsCaPe light for now. I make this decision with a sense of shame at not being stronger and with a sense of self preservation of my embattled psyche. Thank you all for understanding.

memory is a bitch

2006-08-08T07:24:00.000-07:00

If only it all
were a dream
and I could wake up
and it would be over
and I could forget

If only I could be
devine
and I could forgive
and it would be over
and I could forget

If only
the names
of everyday objects
in my hands
could put words in my mouth
and I could speak easily
and I wouldn't stammer
and I wouldn't get crazy
I could forget

If only
I had never had
this stupid disease
and stupid radiation
and stupid chemotherapy
and stupid pain
and stupid painkilers
that make me stupid
that make me
forget

If only
I remember
one thing
and remember it so well
that none of this matters
and that one thing
will erase all the pain
and that one thing
will make it all have
some sort
of meaning
and that one thing
is that I love you

Never Forget

holding

2006-07-21T03:42:00.000-07:00

in every house
sorrow dwells
behind every door
in every house
there is a place
where sadness sleeps
in our house
my son's ventilator's
thrum and woosh
sets a rhythm
for a melancholy dance
into his room
out of his room
we bring liquid in
we take liquid out
clean linen in
soiled linen out
sterile dressings in
bags of garbage out
he breathes us in
we wait for him
to breathe us out
tubes go in
tubes come out
people come
people go
still
he has breathed us in
he will not breathe us out

in houses
everywhere
each day
people lie dying

we who live
inside them
also die
a little
every
day

sorry again

2006-07-17T06:39:00.000-07:00

the 1st laptop that died - died because it fell on the floor
the 2nd laptop that died - the screen light somehow quit
the 3rd laptop that died - first the battery quit then the wire sparked and quit
they were all handmedowns and quite elderly
they will be missed

the desk top works but I can't see or hear Sonnyboy in here and all our overlap time goes to Hubby for his job search

thanks for all the nice comments and good wishes

I will try to visit

gotta go

sorry

2006-07-07T05:30:00.000-07:00

I just wrote a thousand words and some how deleted them . Too upset.

part next

2006-07-05T10:16:00.000-07:00

OK I'll see how far I get today. Sonnyboy is awake and watching NOGGIN.

So Sonnyboy has Klinefelters Syndrome(extra X) and parts missing (VATER Syndrome) and brain damage with seizures. He is very small and fragile and they send us home with no help and no referrals for anything except about three doctors appointments per week for the next few months. I started making phone calls and got him into an infant program with our local UCP.(united cerebral palsy association runs infant programs for all at risk infants). We were unsatisfied with the amount of therapy they were able to provide so we also used our insurance and had him in private OT,PT,Speech and computer. By his first birthday he still did not even have newborn skills and was sick and in the hospital almost every month. During the next few years we found out he had terrible allergies to foods and substances. He had multiple medical treatments and additional surgery. They told us he probably would never sit by himself let alone walk.
It was very discouraging. The older boys were 10 and 2 1/2 when he was born. Thankfully I had very supportive parents and some wonderful friends. Sonnyboy's care was consuming. Husband #2 read somewhere that 95% of marriages with a seriously ill child break up. We worked very hard to take care of all 3 boys. We worked very hard on our marriage. We worked very hard not to down the drain financially. We worked...

and it seemed as though all our hard work was paying off. Sonnyboy came off seizure medicine. Started holding his bottle at three years, started walking at four years, stopped getting sick once we had him allergy tested. The older boys were doing well in school and socially. Our marriage was fragile but intact. We lost some "team" members, most notably my Dad. We were paying our bills. We went to contract on a house and then...

They dropped 8000 pounds, yes, 4 tons of concrete on Husband #2. We were devastated. Physically. Emotionally. Financially. I don't know how we did it but we made it through. Husband #2 read somewhere that 99% of marriages where a spouse has a head injury break up. He figured we had a 99.95% chance of breaking up and just gave up. At the time I was really angry, but, if that marriage had not ended I would never have met Hubby.

If anyone is extraordinary it's Hubby. He is the smartest person I have ever known. He took over helping me raise my boys as if they were his own. He never raised his hand or his voice even when provoked by #1 son (otherwise known as the world's snottiest teenager). He helped me pay my bills and keep my home together. He proposed the day I signed my divorce papers. He helped me hospice my mother at home right til the end. He took care of me and took time off from his job to take care of Sonnyboy while I battled cancer , going through chemo and radiation. Hubby is the best. Of course we still had not encountered our largest hurdle...

but this is all I can manage today.

Life,The Universe and Everything

2006-07-04T05:34:00.000-07:00

(OK,OK, I know I stole this Title)

I wish people could understand that to Hubby and me , what we are doing here is not extraordinary. We are not extraordinary people. We are a bit sloppy, somewhat lazy, fairly judgmental and we don't bathe frequently enough. We don't get out often and are therefore unpractised at the social graces. We work closely together and do not say please and thank you every time we ask for something, which is OK unless we are working with someone else. If it weren't for Sonnyboy our friends and acquaintances would think of us as that somewhat peculiar vegetarian couple who vote Green and write poetry.

We have been thrown into extraordinary circumstances. Sonnyboy never had a chance. He was damaged at conception, and who knows probably even before conception. He was born with an extra chromosome. An extra X. This condition is known as Klinefelters Syndrome. In addition to this there was a "stress" to the pregnancy at approx. 28 days, before I even knew I was pregnant(my first test came up negative). This caused one cell to mess up and Sonnyboy was born with multiple parts missing. They OB and the Sono people chose to believe their was nothing really wrong and I was encouraged to give birth in a local hospital rather than a facility with a NICU. Sonnyboy was in big trouble right away (Apgar 2). He received less than optimal treatment, was baptized (they thought he was going to die) and suffered brain damage from a lack of oxygen before a transport team arrived from the NICU 45 minutes away. After he was intubated and had an IV started he did look better and he spent the next 7 weeks in NICU had a huge amount of surgery and came home . The surgeon admitted that had Sonnyboy been born five years earlier he would have died the first day.

Wow, this is stressful, I didn't know where I was going when I started this post and it is wearing. I think I will stop here and pick up on this at another time. Thanks.

Night Shift

2006-07-03T03:57:00.000-07:00

Nurse's Station

4 a.m.

Low tide of human cycle

Nerves jagged seashells

Limbs irrigous seaweed

Wit of dead calm demands repose

Compelled to watch til sunrise

Conducting fragile cargo through this night

Rolling

2006-07-02T09:19:00.000-07:00

Well the wheelchair is great. It turns out though that I am totally joystick impaired. #2 son has informed me the reason there are so many holes in the sheet rock is because the controller has an inverted Y Axis. So it really isn't my fault when I crash. OK!

Sonnyboy loves going outside. I am quite a chicken though and have been making slow progress in extending our trips. We have gotten as far as going down the driveway into the street and to the end of my property before turning around to go back up to sit for a few hours on the front deck. Hubby was alongside the whole way with the old wheelchair filled with backup equipment for all those just in cases. The neighbors must think we're nuts but as far as I'm concerned that just makes us even.

Sonnyboy is asleep right now, I hope he wakes up early enough so we can do our regular Am care in the Pm and maybe get him outside before dark. If not today, well then fiddle dee dee, tomorrow is another day...

above water

2006-07-01T09:43:00.000-07:00

My ideas are flat rocks which I skip across the sea of your mind.
Your attention alone is what is needed to keep them visible.
A lack of interest on your part is all that is necessary for them to sink.

Forgotten.

Global warming

2006-06-28T03:25:00.000-07:00

Everyone has a theory as to why the earth is heating up but I know the truth.

The world is now hotter than it has been in the last 2000 years. Scientists have determined this fact from looking at the rings on old trees and by looking at samples of ice from the polar caps. Thank you John Stewart on the Daily Show for this information.

Why is it so warm?

Some blame the use of fossil fuels; others say that Gaia is just trying to shake us off, like when you get a fever to fight an infection.

That's not it.

The reason the Earth has gone tropical? It's all us Baby Booming Women hitting Menopause at the same time. It's just one great, big, global hotflash.

Now I used to think as you might (if you are one who has never had a hot flash) that women who complained about them were just wusses. So they feel warm, so what ?
Now, having undergone a medical menopause from chemo and radiation therapy, I gotta tell you, not only are these things personally devastating but they're cooking the whole planet.

If you have not personally experienced a flash I invite you to duplicate the experience. You will need Niacin (not the nonflush kind), a hot coffee, woolen long johns and a bathroom with a hot shower. Take the Niacin with the coffee, dress in the long johns and go clean the bathroom with the hot shower running. Instant hot flash. No you may not leave the bathroom until it is clean. Not funny any more huh?

Well if all these Red Hot Mamas are the cause, then what's the cure? Should we just shoot them and put them out of they're collective misery?

Why no! And trust me I'm not just saying that as a prospective shootee.

What we need to do is allow women of a certain age to just take it easy. Let them sit by the pool in the shade sipping caffeine free ice tea. When they feel a flash coming on they can take a quick dip to cool off. Let them have a year or ten off from work at full pay. We have Maternity Leave why not Menopausal Leave. Get some one to run their errands and do their chores. It's not asking too much is it?

We're talking about saving the planet here people!

little fairsCaPe happy again

2006-06-23T11:30:00.000-07:00

It is so nice to be able to post again. It's like being able to breathe with the pillow off my face. I can visit and post. I can post at home. I toast posties. I sing to the mother blog universal. ( No I am not on drugs- I just don't get out much and these blogs have become my connection to the world.) So I am happy. Hello to all my blogfriends and hello to all you lurkers out there in blog land. I still haven't done the linky thing but I will one of these days when Hubby is not looking for a job or posting resumes and has time to guide me through the process. I have restored some of my bookmarks since switching to #2 son's aged laptop. When I think about the $5000.00 I spent on this when he started school... and now it's not worth much of anything. I guess computers lose value faster than cars. Oh well, I am having fun. Wheeeee.....

tracheostomy tubes

2006-06-20T05:14:00.000-07:00

I guess I'm a dinosaur. I go back to the days of metal bedpans and bathbasins. When the patient left the unit we would scrub these things up, bag them, tape them with the special tape and send them back to central supply to be autoclaved. I also remember metal trach tubes. They were pretty awful. They'd get old and bent and the inner cannula wouldn't slide in and out of the outer cannula and the lock would wear out. What a difference when they started making plastic trachs out of PVC. They were great. It seemed like we were living in the space age at last . Sonnyboy came home with a PVC trach in place. We'd change it every week and just throw the old one away. We had to do "trach care" every day which involved removing the inner cannula , cleaning it with peroxide and a little brush, rinsing it in saline , drying it and replacing it into Sonnyboy's outer canula. All this had to be done with a sterile technique to prevent contaminating his airway and lungs with any new "bugs" and it had to be done quickly because Sonnyboy is on a vent and it's tubing only connects to the inner cannula.

The trach tube we were using was pretty rigid. One day last fall while the ENT docs were doing a change they put the whole thing right through the back of Sonnyboy's trachea into his esophagus. This was a bad thing to do. It took a few minutes for everyone to figure out why Sonnyboy was not able to breathe and we were close to that final curtain when somebody figured out what was wrong and removed and then reinserted the damn thing into the right part of Sonnyboy's anatomy. Sonnyboy spent the rest of the evening in the OR and the next month in the PICU.

It was pretty obvious that he needed a new kind of trach tube and after some investigating they came up with a custom made silicon Bivona . The silicon is soft and flexible, The airway is held open with a series of metal rings kind of like an imbeded spring. Also, the balloon that inflates to form a cuff to keep airway pressure in is filled with saline so its very soft and flexible. The tube is custom made and cost $350.00 to the old tubes $80.00 but it is made to the specific length that Sonnyboy needs. The biggest problem that the docs had was that it did not have an inner cannula and they worried a great deal that we would have problems with plugs of mucous.

It turns out that mucous just does not stick to silicon the way it sticks to PVC. We have followed in ENT clinic since discharge home last fall and the tube stayed clear with regular suctioning. Since it is long and since Sonnyboy is fragile inside we do use bronchial aspirating catheters, but even so the tube is great. Sonnyboy is comfy.No more hair raising weekly trach changes at home and no more daily inner cannula cleaning. The Bivona was changed last month when Sonnyboy was in the OR for his G Tube problem and the ENT docs are very happy with it.

Maybe now we are really in the space age.

Though the tube was initially quite expensive we are saving in the long run.
The price of weekly trach changes. The cost of daily trach care kits and saline and peroxide. The cost of regular suction set against the bronchial aspirators and sterile gloves. And the human cost in terms of stress and physical discomfort would make me choose on the side of the Bivona.

Most docs are going to use what they are comfortable with and what they are used to. But you know, there are hardly any more metal trach around these days...

Bed bath and Beyond.

2006-06-19T16:39:00.000-07:00

Well let's see. I'm not at all sure what's up but we'll give this a try. Some thing else will probably shred apart but f- it, it's letting me blog and post. I promised PK a post about bed baths so here goes.

In order to give a good bed bath you have to keep a few things in mind. First of all you are doing this to make the bathee comfortable. Second you must live to bathe another day. Third, this is not going on your permanent record.That said we begin.

As in the take over of a small nation it is all in the planning. You must assemble the things you will need before you start. This will vary according to the individual but here is a good general list to get started with
disposable gloves (box)
towels (10) you may not use them all but have them handy
wash cloths (30) ditto
basins (2 or 3)one to keep everything in the others for wash and rinse
lotion- best if applied to damp skin
powder - best if applied to dry skin
deodorant- best if applied to clean skin
bath soap- I use No Rinse Body Bath
shampoo- I use No Rinse Shampoo
zip lock bags- it's easier and cleaner that putting the water directly in the basins
toothpaste/other mouthcare equip - Toothpaste on a gloved finger is better than nothing
gargage can with plastic liner- time to toss your diposables
baby wipes- nice and gentle for personal cleansing
water proof pads- protects the bed
bath blanket- keeps regular blanket dry and bathee warm
clean bed linens- whether it's time for a change or just in case
rolling cart- very convenient
hamper-better than throwing stuff on the floor
clean bedclothes and diaper etc if necessary
it's good to actually write yourself a list

on to the bath

take everything extra off the bed while you tell the bathee what you are planning
water proof pads under and bath blanket on top of bathee
wrap arms and legs in towels
start at the top
do one section at a time
don't use too much soap
offer to have bathee do their own personal cleansing other wise just do it
turn bathee on side wash and lotion back from neck to buttocks
clean bedclothes etc

this is a good time to socialize with bathee
it is also a good time to have a good look at their skin and check for bed sores
bedsores can develop overnight call your MD if you are concerned - don't wait

this is a good time to get the bathee up out of bed so you can change the sheets
otherwise , if the bathee can't get up you must dhange the bed with them in it

if you are taking care of someone in bed please protect your back and get a hospital bed if at all possibe
if you are going to be doing this for any lenth of time think about a solid surface floor
well I probably forgot a bunch of stuff but I am sure there are a lot of resources these days for this kind of information

please check with your MD if your loved one is to sick to take care of them selves

Well there it is PK, I've got it all worked out except the exit plan ...

pulmonetics 950 ltv

2006-06-16T06:13:00.000-07:00

ltv=lap top vent

At 13 pounds it sure does come close to being a laptop. It's much easier to use though. I call it the vent for dummies. The fact that it's a life-sustaining piece of medical equipment is hard to get past. I guess you have to both lose and gain respect for it at the same time in order to take your kid home from the hospital on one. You have to lose respect in that if everything else looks good and the vent is putting up some scary shit you learn to go with everything looking good. Then of course you have to figure out why your numbers are screwy. There's often a reasonable explanation. It's hard though when you first come home not to get excited by all the flashing lights and alarms going off. It helps to have a good respiratory therapist from the start, you know, some one who can keep things simple for you and help to weed out real problems from mechanical glitches. You also have to gain respect for the vent and for your ability to take care of it properly.

Don't get me wrong, taking home a kid on a vent is no walk in the park. I've been an R.N. for over thirty years and I was scared shitless to bring Sonnyboy home. I had made Hubby PROMISE not to let them make us do it. In the end we did bring him home and while it has not been easy ( lots of crying and exhaustion at first) it has been worthwhile in a very personal way. For a time even after we came home we decided to try a respite facility. We found out there is no place like home. It is certainly worth it to try home care.

In order to gain respect for the vent there are some important things to know about the vent itself. Be sure they set you up in the hospital with the vent for at least a week before you go home. Get to know your home therapist. Have everyone in your family and all of your friends get to know the vent. Make sure you understand how to do a tubing (circuit) change and actually do it in the hospital before going home. Know how to set the vent up for home (wet) and for travel (dry). Find out how to clean the filters and have them give you extras. Get used to the alarms and learn how to turn them off and what they mean. Be aware that if the kid yawns or coughs or laughs the alarm is going to go off. Yes, kids on vents can and do laugh. Remember though to always check that your kid's airway is clear and that the tubing has not disconnected all the way from the kid's trach to the machine. This vent has a bad habit of popping apart at the point where the filter connects to the vent if you bump it , just be aware and push it back together. Another trouble spot is right at the trach but there are solutions using small pieces of extention tubing called omniflex and by using two different kinds of trach ties. Make sure you are comfortable with doing the trach care, changing the ties and doing the suctioning. Suctioning is scary because it looks uncomforable but if you ever talk to some one who has needed to be suctioned they will tell you it tickles and that it is a relief to have a clear airway. Be sure to be there when they do a trach change and then do at least two changes yourself before going home. One other silly thing the vent does is give out false readings if the tiny sensor tubings get water in them - there might be a better way to handle this problem but we have found that the best way to fix it is to just do a circuit change.

Taking someone home on mechanical ventilation is not easy, especially at first, but it does get easier. Like when you realize instead of fumbling for that extra breath button during suctioning you can just unlock the vent before you suction and dial up the rate by a few breaths per minute and then dial it down to the prescription rate after your finished and lock it again. Of course you would want to check that out with your doctor first. Every patient is different. Every family is different too. Not everyone can handle a vent patient at home. It can be done though. I didn't think we could do it but I am glad Hubby broke his PROMISE to me and let them make me take Sonnyboy home. There truly is no place like home.

Texas catheters

2006-06-13T13:58:00.000-07:00

First, I can not believe how difficult it has been to post lately. I have no confidence this will ever actually be seen by anyone but me. I managed to get a poem up on fairsCaPe. At least I think I did. Oh well, log on and blog on I always say...

Todays topic is one you may or may not care for or ever have the opportunity to have need of information or actual wise. It is about the venerable texas catheter. We avoided using them on Sonnyboy for the longest time because our experience with them was limited to their improper use by hospital staff. Properly used they are really not bad. The trick to their proper usage is to remove them each time the patient voids and to thoroughly cleanse him. We use a gentle lotion and baby wipes because Sonnyboy is so fragile. The next important thing is to completely dry and powder the patient. We use Ammens medicated powder. Let the patient have a short "breathing " period before reaplying the catheter. Following manufacturers directions will mess you up. Always attach the catherter to the drainage tube before applying, then roll it on, then give it a friendly squeeze to set it in place. Use a fresh catheter each time. Washing and reusing is a false economy plagued with catheter failures and wet beds. Hopefully no one out there will need this info but if you have a frail elderly parent or grandparent it might be easier than changing diapers. Sonnyboy voids up to a liter/quart of urine at a time and the darn things hold on at least 80% of the time.

Blondes

2006-06-03T08:12:00.000-07:00

I was born blond. Brother is blond, hubbies A+B blond, #1+#2 sons blond, Sonnyboy blond. Current Hubby is not blond, so not blond that if you wrapped him up in a turban and shot him the FBI would pay you whatever they're offering for Osama. Hubby hates it when I say this as he is adopted and who knows and he doesn't like being compared to mass murderers. People used to alternatively scream out Manson or Jesus at him as we walked along. He is actually quite beautiful. I am always having to throw buckets of cold water on gay guys who try to chat him up.
Anyways back to the blond thing. With age the blond thing has matured into what has variously been described as dark ash blond,dirty blond, mouse brown or light brown with blond highlights. Hubby says I have honey colored hair and is amazed at how if you look at each hair individually I have everything from platinum blond to black growing out of my head. Since I was a kid I wanted long straight black hair like a Polynesian Princess.
Blond people get a lot of bad press. Dumb blond jokes abound. Bleached blond remarks are unpleasant. It is just not a pretty stereotype. Why then, do so many women "go blond" and why are men so attracted to blond women? Is it some sort of Darwinian thing? Are blonds recognized a genetic recessives ready to be dominated ?

It's a blogs life

2006-06-02T05:38:00.000-07:00

Blogs were born to sleep in the sun. -Snoopy

Oh well, why not, history rewrites itself,people are misquoted and all's fair in love and blogs.

I guess one "side effect" of getting older is that I am now able to blow off the remarks of people I used to take to heart. When I was younger I would be just mortified if I thought someone didn't like me. I am still not sure what the dynamics were but I guess I needed to feel I had the power over people to make them like me. I know now that I am powerless over other people . What a release. I no longer feel responsible for the way other people feel. I like that warm fuzzy feeling of consensual validation if some one writes something nice in the blog or agrees with me in the nonblog world. I find I don't value myself based on others' remarks anymore. It's not that I have tried to care less, its just that I have mellowed . Finally. Phew!

And Sonnyboy approaches 22

2006-05-30T05:33:00.000-07:00

And I can hardly believe it. And after all the doubters telling me he wouldn't make his last birthday. And we still have him at home. And he still seems happy and comfy. And in his own way healthy. And he will be 22 on June 1,2006.

And we finally have THE WHEELCHAIR. And it has only taken a year and a half to get it. And now we will have to remove part of a wall to get him out of his room in it. And I find I am totally joystick impaired.

We already had him up in it, all 285 lbs. of him. I told that nutritionist we needed to cut more calories. He is vast. I'm shocked. I hope he'll burn more calories now that we can get him out of bed and into his new chair. I've talked to his MD and we cut back on his calories without cutting his fluid or overconcentrating his formula. She will be coming to see him tomorrow.

#2 son and friend will be taking down the wall soon and then we're off...

Poisoning Time

2006-05-25T05:51:00.000-07:00

It is that time of year. Time to poison all creatures great and small. The chemical trucks rumble through our neighborhood with their latest witless drivers sloshing and careening around the bend with no regard for the living. They are after all , delivering death. Death to all the little things that would dare to creep beneath the fine green grass and death to all the larger ones that creep upon it. Death to any plant not planted by design and death to the water supply needed to feed it all. Death to the planet. Death... arg!!!

They squint suspiciously at my "lawn" as they ooze by- weeds, bare spots, dry spots, birds, bunnies and squirrels merrily dot the "landscape". We keep it tidy. No washing machines on the porch(well just that once). No rusting pickup on the grass(its parked nicely in the drive way thank you). And while we rarely cut the backyard(my bird sanctuary) we do stay a step ahead of the Villages "weeds and debris" letter out front.

My poopyheaded next door neighbor is a sprayer. Not just the big truckfuls of glop but some secret, hidden, expired, not sold in stores anymore,illegal, chemical-supply-tucked-away-in-the-corner-of-the-garage-under-a-dirty-rag sort of stuff. Neurotoxic, carcinogenic military industrial complex strength stuff. Scorched earth stuff.

The stuff makes Sonnyboy seizure. In fact, the first time he seizured was on a beautiful, sunny, breezy spring day. A day my neighbor was out there spraying. A day we had opened the windows to invite the day in. In came The Spray. Out went Sonnyboy.

It took a while to make the connection but once I did I begged this person not to spray. I appealed to her intellect. She is after all a teacher at the most highly rated high school in the county. I appealed to her humanity. I obtained literature on "green" alternatives. I threatened to cut down her stupid ornamental fruit trees. I even called the police and was able to get Sonnyboy out of the house while she sprayed and then I had #2 son hose off our house. Last year Sonnyboy was in a respite facility at spraying time. It's that time again.

Maybe she managed to spray while he was in the hospital. He did seizure all day after we brought him home.

How can smart people do such stupid things?

Cresting

2006-05-23T05:15:00.000-07:00

I guess there must be some cute word for when you are just about to reach the top of the hill. You know, right before you go over the top and its all downhill afterward. Youth struggles up the hill and then middle age sort of coasts along so as to fool you into thinking you will always be the same person you've been for the last 20-30 years and then suddenly you are screeching down hill and you realize you've got no brakes. Not only can't you stop but the road is bumpy, the view isn't pretty and the bottom of the hill is obscured in fog. I think it would be fair to say that there should be some sort of warning. You should get a letter in the mail from those AARP people stating Dear Sir or Madam...You are about to pass your prime...Get your sh*t together now before its too late. Stop joking about old people because "tag" you're it.

#2 son's girlfriend graduates from college today. She is having an 80's themed party this weekend. She has invited "moi". All I can remember wearing in the 80's is a wedding dress, maternity clothes and whatever still fit that was leftover from the 70's. I suppose I could stick a yarn wig on my head and go as a cabbage patch doll...What am I going to wear?

And back again...

2006-05-21T03:22:00.000-07:00

Well we're home and so far so good. All systems seem to be in good working order. I managed to only make one new enemy over at SBUH and she was just a second year medical resident who probably should switch over to a career in anesthesiology. Maybe not though, although I'm sure she would be able to put people out , I'm not sure they would ever wake up again. All those little bottles of medicine with all the different names might just be too much for her. She seemed to have some sort of first hand knowledge about inhaled medication though. After our little altercation they managed to keep her away from Sonnyboy so all went well. Everyone else - even my neonazi arch enemy in the ER - was very nice.

Sonnyboy seems no worse for the trip. His feedings are back on schedule and seem to be staying where they belong. He managed to sleep both pre and post op and has basically been awake since yesterday morning now. Hubby took the night shift and is now in bed. No prospects for employment yet, but, I'm sure he'll find something one of these days. After all he's a geeknius.

Thanks to all for your "positive" vibes. It means a lot to me to know there are people out their coaxing the universe on our behalf. Love to you all.

home care

2006-05-20T03:47:00.000-07:00

home care

Well I try again. Yesterday's post wound up in the fairsCaPe blog with the poem.SOnnyboy's operations went fine. I just spoke tot htem and he is basically still asleep. we stayed pretty late yesterday but yoou know sonnyboy he can sleep a long time . I gotta go . much to do

Back to the Hospital

2006-05-12T11:32:00.000-07:00

It will be quite some time before I post again, Sonnyboy is having some problems. Nothing serious, but, time consuming and we are preparing to return to the hospital. Thanks to all.
Bye.

BeautifulBeautifulPerfectPerfect

2006-05-11T16:05:00.002-07:00

The oncologist's office just called. "Negative" never sounds so positive as when you're getting your Pap results. Thanks to everyone for sending out that "negative" vibe.

BeautifulBeautifulPerfectPerfect

2006-05-11T16:05:00.001-07:00

The oncologist's office just called. "Negative" never sounds so positive as when you're getting your Pap results. Thanks to everyone for sending out that "negative" vibe.

BeautifulBeautifulPerfectPerfect

2006-05-11T16:05:00.000-07:00

The oncologist's office just called. "Negative" never sounds so positive as when you're getting your Pap results. Thanks to everyone for sending out that "negative" vibe.

to do or not to do...

2006-05-11T09:22:00.000-07:00

Some days I just wish I could stay in bed all day. I wish I could just turn my back on everything. I guess I'm just not taking the right drugs. I need an antiresponsibility serum or something. I make me sick. Literally, figuratively and actually. I am not who I am therefore I stink. Well, I'm fed up with posting kid poems and mother poems so I think I will post some Math poems over on fairsCaPe. My mother loved math , the last book she asked for before she died was one of her old Integral Calculus books. Now that Hubby has taken over being a mommy to me and to Sonnyboy I guess these posts are also for him. Love to them both.

OMG 11elevenone wtf

2006-05-09T14:52:00.000-07:00

Freud was wrong. He would be 150 years old this year. Sometimes a cigar is not just a cigar, it is shorthand for Chinese girls addicted to RetroMUD (an RPG). But, you don't have to take my word for it . Just google Urban Dictionary. In the course of an afternoon I looked up a lot of words I wasn't sure about with interesting results. Then as a goof, I looked up the names of some of my favorite blogs - with absolutely hysterical results. Then I looked up fair and scape, not expecting to find anything and omgrotflmao I found out something I did not know. Just in case you think my blog name is bad try looking up your own name or one of your friends. I don't know if the world will ever be the same again. I don't know if I can ever write a blog or talk in front of people again without consulting this resource first(quick check - first is listed but is not obscene or drug related). Have Fun !!!11elevenone!!!

Cancer sucks

2006-05-09T03:31:00.000-07:00

I met some one once who said they wanted to get their Mom a t-shirt. Their Mom was in remission with breast cancer. They wanted the T-shirt to say "I survived cancer therapy".
I get it now. My cancer was asymptomatic until a week or two before diagnosis and even then it was no big deal. And my cancer was advanced to what the American Cancer Society calls Stage 2B. With therapy I have a 60% chance at a five year survival , without therapy the doctor gave me 3 months.
Well its been 2 years and the chemo and radiation have done their job , so far so good( still waiting on the most recent test result). Last night though, I forgot to take my medicine. I had a so so night but I'm paying today, I could take the other medicine but it fuzzes me up and I might have to drive. I think I'm going to have to take it though, I really can't see going on like this all day. OK, whatever, the point of this all being, the problems I'm having are not from the cancer but from the treatment.
If I had gone for regular check ups I could have avoided all this with an early diagnosis. So, if you have a cervix make sure you Don't Skip Your Pap Smears and if you know someone with a cervix don't let them skip their check ups either. This is a killer disease, but with early diagnosis it is relatively easy to cure. With regular Pap smears, HPV testing and the new HPV vaccine we can virtually wipe out cervical cancer in our lifetimes.
So if your due for a check up make that phone call today. You could be saving yourself. You wouldn't let any one else hurt you right? So don't hurt yourself.
If just one person reads this post and goes for their checkup it will be worth it to me to have shared. Let me know how you are doing.

Monday Monday

2006-05-08T05:39:00.000-07:00

It's harder to keep track of the days of the week now that Hubby is home all the time. I guess I never really developed an affinity for weekends when I worked because you had to be in every other one. You rated a sure trip to the office if you called in. I remember working one Mother's Day with the worst (and last) hangover of my life. I told everyone it was pollen allergies and they bought it. Luckily the MD's had emptied out the SICU for the holiday by not doing anything fancy in the OR that week. I finally got it through my head that day that a career in alcoholism just wasn't in the cards for me. I have way too low a tolerance and get sick every time I drink. Anyway...

#2 son has gone off into the outstretched arms of corporate america. I thought I could catch him on his was out with the obligatory "first day of real work photo" for the album.
I figured it would be cute next to his "first time stoned " and "first time arrested " pics.
He got away though, up and out before I had expected, eager to arrive on time; sober, straight and ready to meet and beat the world. HAHAHA...

Sonnyboy was awake for 32 hours when he finally was able to fall asleep 9 hours ago. I have to go shuffle through and find a few poems about him for the fairsCaPe blog. He has kept me on my toes for so long now that the only shoes I can wear are pink,satin and laced up with ribbons that wrap around my legs. Where's my tutu...?

Mother's Day

2006-05-05T13:41:00.000-07:00

Does this day belong to mothers more than any other?

I have a problem here, that's O.K. though I have a problem with Women's History Month,Nurse's Week,Secretary's Day and any other celebration that relegates,to a specific set apart time, the respect, love, and attention;given to any women, any human being, that is due them every moment of every day.

You may argue that this is just an extra special time,but, that's the easy Hallmark answer. I've known women, bitter with the cold neglect of a year, who smile too appropriately as pictures were snapped on their "special" day.

I propose, at least, a Quarterly Mother's weekend.

It's spring, time for Spring Cleaning. After all, what would make a mom feel more appreciated than to have people acknowledge her work by doing it. A house and garden,cleaned top to bottom, front to back,side to side; shelves stocked with groceries; hand made meals prepared ; all done by the loving hands of sons and daughters, demonstrating what they have learned from Mom. Showing, that they have more to share, than a greeting card, a box of sugar, a few dead flowers, or a half a days paycheck; tax and tip included.

Mother's Day is a week from tomorrow.

99%

2006-05-05T06:05:00.000-07:00

I/We guess I/We must have the blogospheres' most boring blog profile. Since Dirk the Feeble linked from his blog to mine I have had an increase in the number of profile hits, but, by comparison only 1% of those hits have resulted in comments on my/our blogs. Or the blogs could be boring,as I/We said, compared to my contest entries these blogs put the blah in blog. Hubby will be showing me how to link soon and then I'll be able to at least send you to other more lively spots. The are a whole bunch of art and photography blogs that are fun to visit. And there is this blog called Veiled Conceit which is ,well, you just have to go there and see for yourself. I laughed til I cried.

Sonnyboy woke up after I was asleep last night and Hubby didn't write down the time. I guessed he'd be awake by 3pm but I was wrong. Who knows when he'll go back to sleep. We have been having lots of fun today, he is in a very smiley, happy mood. His nurse was here last night and she reports he was happy all night. What more could a parent ask for ? I have three happy sons. Each finds his own kind of happiness his own way. I'm a very proud Mom. I have a lot to celebrate on Mother's Day. I will try to post some mother/child poetry on the other blog with the holiday coming up. Let me know if you have poetry somewhere that you would like me/us to read.

password protection

2006-05-04T09:52:00.000-07:00

FairCaPe is a computard. Hubby is a geeknius (silent K). Hubby sets things up so fairsCaPe only has to point and click and all things blog appear. Hubby likes to sleep without fairsCaPe stamping around barefoot on the carpet to see if Hubby is awake yet for Tech Support.

FairsCape is kind and generous. When some one of #2 son's playmates ask to check their email fairsCaPe says " Sure".

FairsCaPe is sorry. On many levels. One of #2 son's playmates invaded fairsCaPe's blogracy and posted unkindly either in faisCaPe's persona or otherwise. Said playmate, it seems likes to"dis" blogs and rile folks up.

FairsCaPe apologizes. If this young person has come by and annoyed you through fairsCaPe's blogbookmarks, fairsCaPe is sorry.

FairsCape is not talking about the contest posts. I/we take full responsibility for those.

FairsCaPe forgives #2 son and #2 son's playmate. All email will be checked on #2 son's computer from now on. The "dissing blogger" will blog from his own blog. All will be right with the blogosphere.

Sonnyboy is asleep. Hubby is asleep. FairsCaPe had a good checkup yesterday at the radiation oncologist.

#2 son drove fairsCaPe to the doctor so I/we were able to take 2 Vicodin (my favorite) before the nasty exam. Now I/we just have to wait for the Pap Smear (my favorite) results. Everything else was normal. Phew!!!

My mother would be proud

2006-05-03T03:38:00.000-07:00

Not!

Well , Welcome to our lives, oops, our nonlives according to Dirk. Actually we had lives once upon a time and now we have, well, you, the blogosphere; our international penpal club , village square, and curbside cafe all rolled into one. Writing the posts for the contest severely cut into my solitaire and crossword puzzle time. I'll never get those moments back, but,winning this prize has made it all worthwhile. I emailed Dirk and asked him to link to a blog other than my own if my name was the one he pulled out of his hat as winner. Of course, Dirk being Dirk, he linked, but not to the blog I had requested. He linked to Tea and Books and that is just fine with me . I like that blog and there are a lot of good links there, in fact I believe that is how I found Dirk in the first place, so it is only fitting. Well, its time to put on Noggin, turn off Sonnyboy's tube feeding and get myself a Stoneyfield Farms chocolate underground fatfree yogurt. Even people who do not have a life have to eat.

ps I did not say my bog "sucked" I said it put the "blah" in blog . I would never use a word like "suck". Please!

Rollin' all night long

2006-05-02T03:56:00.000-07:00

It's morning and my little cutie ( not that a 6 foot tall-250 lb. 21 yr. old is little) patutie is still awake. We are at 37 hours and counting. Bob the Builder must be exceptionally funny today; Sonnyboy keeps laughing and setting off the high pressure alarms on his ventilator. I hope he doesn't wake up Hubby. We changed shifts between 3-4am and Hubby needs some sleep. Oh well, at least tonight the nurse will be here from midnight to 6am. I hope. As long as none of her kids are sick.

Tomorrow I have to see my radiation oncologist for a regularly scheduled check up. I can hardly wait . At any rate wish me luck. I would cross my fingers but it makes it hard to type.

#2 son got a call yesterday. He starts his first REAL job on Monday. He'll be doing computer Graphic Design. I am pleased and proud. Please wish him luck as well.

They have done all these research projects on the power of prayer etc. I wonder if they have done any on the power of wishing people luck. Anyway good luck to everyone on everything just in case it works.

Today is another day

2006-05-01T04:03:00.000-07:00

So Sonnyboy slept for 42 hours (long but not a record) . It's easier in a way with him on tube feeding I don't Have to worry about his nutrition or dehydration. With the texas catheter I don't Have to worry about wet diapers and diaper rash. With him bedbound with side rails up I don't Have to worry about him rolling off the bed and on to his (heavily padded) floor. I don't Have to worry about him seizing and falling or causing a ruckus or bothering the neighbors or ... sorry... just looking for the silver lining...wouldn't Pollyanna and Scarlet be proud.

Of course he waited until I couldn't keep my eyes open to wake up. Sweet Hubby took care of everything.

We turned him on his side before Hubby went to bed (about 6am) so I will wait til I turn him on his back to play Beauty Parlour. We switched from PBS Kids to Noggin at 7am. I know it comes on at six but Sonnyboy loves Dragon Tales and Bob the Builder on PBS. Dora the Explorer is on now.

I wonder how long Sonnyboy will stay awake after his Marathon sleep...

Time Sink

2006-04-30T05:06:00.000-07:00

I think this phrase was invented at the advent of personal computing but I am not sure...I suppose I could Google it ...but I am not sure how long I would be there reading the first few hundred hits out of a few thousand and I want to post this blog today while Sonnyboy is still asleep. I want to play Beauty Parlour
when he wakes up, he needs a shampoo, manicure, and pedicure not to mention a bath, a poop and a complete linen change, He has been sleeping for 31 hours, long but not a record for him. Also, Hubby has mentioned that Sonnyboy needs his beard trimmed. Last time I was suctioning his trach I noticed his beard hairs have grown considerably since his one sided shave in the hospital. Time does heal all wounds (Geeze how cliche). Sonnyboy loves to play BP so I will wait until he wakes up. He is in one of his deep sleeps and I could do it all (except maybe the poop) without waking him,but, I ain't got no bus to catch and I am out of doritos. Lately ,I have been possessed by the dark soul of a preteen boy and have been blogmenting excessively on Dirk the Feeble's blog called Afraid of the Dark. I'm afraid I have been very, very, bad. Those of you who actually know me will not be surprised. I can feel the breeze from your collective head shaking ;I have been posting a lot of updated , formally abandoned poems on my other blogs. C'mon
fairsCaPe just wants to have fun...

Tahiti

2006-04-29T02:48:00.000-07:00

There are two places in the world I have always wanted to visit. I'm not sure why, but for as long as I can remember I have wanted to travel to France and I have wanted to run off to Tahiti. Maybe it's one of those past lives things or maybe some junior high slideshow presented by our French teacher Mde.Du Mott. Not that I enjoyed taking french, it was my worst subject. I only scored 89 on the regents exam and our teacher Dr. Smith(who spoke french with a southern fried accent - Bone Jurr Claass) raised an eyebrow and stared at me for a full minute when he read my grade. Like I cheated and he was waiting for me to confess. Right in front of everyone. But no. monsieur, Je ne Cheat pas, merde tete. Anyway,I guess the only reason I took french instead of Spanish, (which could have been useful) like everyone one else is that my mother studied french in college. I thought she could help me -NOT! Mommy managed to go though menopause right as I was going through puberty(take notes all you late in life moms) and we found it best in those days to "communicate" through my father, in writing or not at all. So much for the french tutoring. Added to that is the fact that the people with whom I have had the worst dealings with in my life have all had french accents. Except of course, Haitian people. I love Haitian people...but they killed off all the french in a revolution didn't they... but I am really wandering away from the point here. The recent events of my life have pretty much closed down any notions of traveling and the riots in france have quelled my fire for travel to france in particular . As for Tahiti, when the kids were small and were being kids, I used to tell them If they didn't behave I was going to "run away to Tahiti". Of course they blew me off until one day, poor dear, sensitive #2 son was watching TV and called to me from the next room.

"mommy,mommy look on TV, there really is a Tahiti"

"yes #2 son , that's right"

"does that mean you are really going to run away?'

He was obviously upset,I guess he was less than 7 yrs. old.

"no, honey, mommy just says that when she is crazy, besides auntie L. went there and she said everyone has a garbage pit in their front your filled with Mc Donald's Takeout Garbage."

It seems that having a compost/garbage pit in the front yard only works if the roaming pigs can actually eat the garbage. Trashy wrapping papers are a nonconsumable. Even for pigs.

"beside that, I heard it is way too hot"

"so you're not going?"

Nooow, I would like to think he was afraid of losing me and that by promising not to go I made him feel better, however, in retrospect, it is possible that he was more thinking about McDonalds at this point and how daddy would let them eat it if I were gone because I wouldn't let them while I was there. Little boys have their hearts connected to their stomachs at an early age.

Well Sonnyboy's feeding is about to finish, he needs to be turned and I need to eat something. I'm sure it's lovely in Paris (sigh -April in Paris) and they probably have sorted out that garbage problem in Tahiti by now...After all #2 son isn't a little boy anymore... So please don't turn me in to some tourism spammer,OK?

Fabulon-ous

2006-04-27T03:45:00.000-07:00

It has been a while since we have had floors refinished, so I didn't know who to call. None of the ads in Pennysaver had familiar names ; ditto for the yellowbook. A few calls reaped nothing but answering machine messages so I went down to our local Hardware store for advice. Well actually I sent #2 son down and he came back with a name .Joe. Called him and got his wife Sue. Nice people and they love the Hardware store too. Well, the bedroom floors were done in half a day and the price was reasonable. He used Fabulon. My Dad used to use it and the finish always held up great. I'm sure the new tenant will love the floors. Now I've got to get the downstairs washed and waxed. Had them redone a few years ago and now they look sad compared to the upstairs. New laminate floor in the kitchen looks great though with the new frig and range. Got the GE white on white up at PC. Can't wait to show it all to the new tenant. She loved the place even before we spruced it up. She seems like a sweet girl with a nice kid. Hope this all helps her feel at home after all her recent troubles. Sonnyboy is just bob bob bobbin' along with the red,red robins. Ah Spring...

I blame Christopher Lowell

2006-04-26T06:08:00.000-07:00

That's It

And he owes me a lot of money.

For the last 25 years I have been a small time landlord. I have prided myself in how perfectly clean and how pristenely white my apartments have been when my new tenants move in. They usually stay for years if not decades. When they leave I set to work restoring these centuries old places to their former glory. Lately I have discovered an alarming trend. Color! Totally outside the terms of their leases and without even asking I have had one tenant after another painting rooms and even whole apartments in color. Peacock blue bedrooms, orange dining rooms, teal living rooms ; dark saturated intense colors. Colors that are taking 2-3 coats of primer to obliterate. And to what end? So that the next Christopher Lowell watching, House and Garden reading, Home Depot shopping tenant will come in and paint over my beautiful white walls with some impossible color. Christoher Lowell you owe me.

People who need people...

2006-04-23T05:31:00.000-07:00

are the bloggiest people in the world...

I never liked BS as a singa...too schmaltzy for my tastes. A lot of people do like her though and not just gay guys,right? Anyway I do like her as a comedic actress...she really nails it with her parody of a sex therapist in that Focker movie. I like to watch comedies sometimes when Sonnyboy is asleep. I have to be careful though not to laugh out loud. There I sit with headphones on, neck pillow on backwards over my mouth, staring at the silent TV giggling hysterically. Hey, it's healthier than taking those drugs the doctor talked about. No side effects except looking quite odd.
Ha ...I just found the spell check...old dog huh? Well, now all my msspllngs will be intentional.
Really though,blogdom has replaced the well in the center of town as the place where people can get together and share . Births , laughs, death, tears and the occasional perversion,its all out there, just a point and click away. BTW, that dodgeball movie was funny...watch it all the way through the credits...I cried.

Into the fray

2006-04-22T05:07:00.000-07:00

Ah

Well looks like some changes have already occured. Hubby has jumped in with a companion blog, so far it's technical but who knows where it will go. I can see he's already been making some alterations right here at the draft site.Who knows what will happen next...hahaha...only the persistent fool knows. Music?Pictures?Video?Counters?Links?Ads?Flashy unreadable gobbledygook?Look out blogger, ta ta ta da...the poor mans website is about to be Hubbysized. Or not. Only time will tell.

Recuperation

2006-04-21T05:53:00.000-07:00

home care

Well, I wish I had something funny to tell you all but since I don't I'll just update you on how things are going. Sonnyboy seems about ready to go off to sleep. He woke up late yesterday afternoon and stayed up all night with the nurse. Hubby and I each got a bit more sleep than usual. It really makes a difference on the nights she is here. Too bad that's only twice a week. Hubby is taking some time off to look for a new job. He has been very happy at "the lab" but he is looking for something closer to home or something where he can telecommute more. He gets so much more work done at home without the distractions at the office. The person in charge should hire someone to handle all the stupid phonecalls. Hubby is not a secretary, and he is too nice and too helpful to just blow people off even though most phone calls are a total waste of his time. Also, he is required to go to meetings that have nothing to do with his projects, While he finds them interesting, they to take up too much time and are more social events than anything else. Another big problem is that the bathrooms are inadequate for the number of people working there and totally lack privacy. I remmember one time while I was undergoing pelvic radiation and I just had to go while we stopped by for a visit, Ohmygod how embarrassing,I could see why no one would want to have to use the loo there on a regular basis. I practically had to crawl over some one to get in and out. Even running the water didn't cover up the sounds and there was no vent fan, It was so mortifying that I never went back again... So he's dusting off his resume and checking the ads,probably start calling and emailling by monday. Everyone at work has wished him well and has offered to give him references. He has been their go to guy for so long that they will miss him when he is gone, but, he seems to think he has trained everyone well enough that they should be able to work their way through any problems, Of course, he'll only always be an email away. Most everyone has been so wonderful and supportive over the past few years what with Mom's final illnes and passing, my cancer, Hubby's Mom's passing and everything with Sonnyboy. I don't think Hubby's manager even knew Sonnyboy was just in the ICU again or she wouldn't have been such a ***** lately. He is finally doing well again. Back to his baseline. Smiling and happy just watching tv or listening to us talk or just staring out the window at his beautiful flowers. I
have the best husband in the whole universe. Without his love and support I couldn't keep my Sonnyboy at home. Big Kiss...

Milestones

2006-04-16T06:27:00.000-07:00

home care
Here it is Easter Sunday and everyone is still asleep. What fun it was when we were kids to go one one of Dad's Easter Hunts. I tried to create the same fun for my guys when they were little. We'd all be up at the crack of dawn looking for the first clue in the hunt. Funny how it was usually under Dad's pillow...the Easter Bunny would send them down to the basement to the dryer and there would be candy there with a clue to look up in the attic, then to the garage, then back to Mom and Dad's room. All in all there would be candy hidden in about 30 places . One year the Easter Bunny forgot to number the clues and we were finding candy for months after because someone found something out of sequence. The only rule was not to eat any candy until after breakfast which the kids happily helped to prepare. Don't think they didn't sneak a little bit before though... then after they ate as much as they wanted. It didin't matter if they felt icky afterwards, it helped them to learn to set their own limits. I loved my childhood as much as I loved being the mother of three boys. Not that things were always perfect, far from it, but I treasure the happy memories. Life goes by too fast. Don't blink...

Mother was right

2006-04-13T01:46:00.000-07:00

home care
Mother was right,you have to send mail to get mail. I guess she would give the advice today that if you want your blog read, you have to read and comment on blogs belonging to other people. What an interesting "little" community we are, eh? One of my new favorite things to do here in the blog zone is to go from blog to blog by clicking on the next blog icon at the top right hand corner of the page. I get truly miffed if some one has customized their blog so that this icon is removed, especially when you stumble on a truly yucky blog with someone doing something impossible with their body parts. I just want to get out of there before the image is permanently burned into my brain. I try to click next blog but I'm trapped, the icon is missing and I have to think and scramble around with my mouse to get out. Ewww! then Phewww! and I'm out. The other thing that drives me crazy are the blogs with a black background and print so small that I wonder if they want anyone to read the blog anyway.
Here on the homefront Sonnyboy was asleep for 2 hours after being awake for 34 when I got up at three am ,but, then he yawned, set off the low pressure alarm on the vent and woke himself up. He has been off the antibiotics for a few days now but the poops are relentless and scorching. As my mother would say, this too shall pass. Hope so. Now click on that next blog icon and I'll see you tommorrow.

Response

2006-04-11T02:44:00.000-07:00

home care

Dear Anonymous

Thank you for visiting my blog.Certainly you have a right to your opinions as do I. A more appropriate forum for Commrnt on CB's blog might have been in her comments section.Perhaps you tried and she refused to post as she enables comment moderation. I don't. CB would not have posted my comment if she found it offensive. Also,I do not post anonymously so that CB and anyone else reading her blog will know with whom they are talking.

As for you not getting my blog, it is a record of the days (most likely the last days) of my beloved son. If you had read from the original post on this might have been clear. As I spend most of my time in his room here at home I do not get out to see friends and family. I have very little energy left for phone calls at the end of the day so this is a way for them to keep in touch with what is going on with him. It is also a record for me, for later, after he is gone.

I like the character portrayed in CB's blog and have even recommended it before in my blog to my friends. Her drunkalogs are reminescient of those I used to hear when I attended open meetings with my ex. He as the member, I was just a "civilian".
If CB's blog is her true real life or a well constructed fiction is unknown at this time. No matter. Thanks for caring enough to check out the phone number.