Saturday, February 26, 2005

If A Tree Falls...

How does that old question go, again? If a tree falls in the forest and no one hears it, does it still make noise? or something...something. I can't remember.

If all the feeling goes out of my toes, most of my foot and leg - and I don't acknowledge it - does it still happen?

I am so scared, I can barely stand to write the word "paralyzed". But, that is surely what has happened on my lower right side. I want nothing more than to be able to squeeze my toes together and /or flex my foot. I try and absolutely nothing happens. I sat up in bed last night, rocking my cold, numb leg like it was a sick child.

I'm getting really bone tired, and I just don't know how many more windmills I can fight. Nurse Sis has been e-mailing my Neurosurgeon up in the Bay Area. He has a couple of thoughts as to what might be going on. It could be a radiation reaction, or it could be another brain tumor. It might be able to be treated with steroids..........or???????? In the meantime my writing is getting worse and my typing slower with more mistakes than you could imagine.

I had a mid-March three month follow-up appointment to see him. That is now going to happen next Friday after getting an MRI on Thurs. On the following Monday I can see the Radiation expert (I forget her title) if necessary. Right now all that sounds like months - not days - away.

I will keep you posted, or ask Kid Sis to do it for me.

Tuesday, February 22, 2005

The Muse, Con't.

More about Calliope - Kid Sis read your note under Comments, T.T., from Grand Rapids. Thank you for taking the time to write. Sorry to say "Mom" got about half the story straight - leaving Calliope (aka - Pissy) with some bad press.

Recently Kid Sis did have her seen by several vets. The first one was for a possible new out break of nose cancer. She had had successful surgery on that a couple of years ago. This time it turned out to be more of a case of sticking her nose into someone else's business - or dog dish - or... it was just a little nasty looking scab.

Her next stop was at a Feline Renal Spec.(!!!!) - I never knew these existed, but L.A. folks do love their animals (probably a lot of other places, too - Mom just hasn't been paying attention). So, Pissy does have special food and could be having some kind of daily IV treatment but Kid Sis and Nurse Sis decided to just try and keep her as comfortable as possible. I think I had a brain-fart around this whole episode. So, until I was the one trying to get across my bathroom, etc. I didn't keep very close track of that part of our animal Kingdom.

Now, T.T., comes our part - - Pissy DOES care - she just can't seem to hit the broadside of a barn according to her Mom. She does go into the liter box, squats down as best she can - which is only a little - and stands back up - wondering where it all went!!! That's where I enter and FIND it. Last night she was back in the bedroom with Kid Sis, complete with re-circulating water, fresh food - both dry and wet, fresh liter and a warm, cozy bed.

Between 5:00 and 8:00 a.m. the noise got so loud Nurse Sis threw open the door to see what was going on. There was Pissy SITTING ON TOP OF KID SIS' HEAD, meowing away. K.S. was asleep with ear plugs in. She said on the program Super Nanny the parents are taught to ignore bad behavior...Think someone will soon be spending time in the Naughty Corner. Any guesses who????

Saturday, February 19, 2005

Nurse Sis on Move

Kid Sis' almost 19 year old cat, Calliope - the Muse of Music - has turned into Pissy - the cat who goes crying throughout the house all night making a loud guttural sound. We've tried a heating pad on her little bed, lights on all over so she can see, warm milk, treats....

The only thing she seems to like is sleeping with G.Ma and Hero. But she comes with dishes, bed, water and worse of all a liter box she refuses to hit! We've tried big ones, covered ones, long ones but she still prefers the outside on the floor, thank you very much. Her next favorite is Hero's Puppy Go Potty liter which will not absorb cat pee. It just makes it stink to high heaven and makes him refuse to go in it. So, he pees on a rug, or on the rain tarps or where ever. Are you getting the zoo feeling to all this yet?? There's more....

Now along comes Mom in the middle of the night when everything is nice and quiet, using her walker - wheel, wheel-clump ; wheel, wheel-clump...auuurgh (hits ice cold pee) wheel, whe.... oh you get the picture. This can happen one, two, even three times in an eight to nine hour stretch.

"And how does this effect Nurse Sis,?" one might ask. She is one thin wall away from this madness. She has to get up in the morning, refreshed, ready to roll out and get on with her busy day. We've suggested ear plugs and/or a bit of Ambien.

Her answer is to try the Guest House, a compact, converted garage - cold in this weather - but quiet. So far her Lab just paces back and forth wanting to come into the main house, back into the craziness we call "bed time".

PLEASE, PLEASE...if any of you have solutions to our problems (other than putting Pissy or Mom down) please let me hear them. See, I know you guys know these things - the old been there, done that - Just like I saw someone wearing their leg brace OUTSIDE of their pants. Geez! and here I am trying to pull something over the top of this sticky,velcro brace. I'm getting way to old to discover all this great stuff by myself, so any and all help is gratefully accepted.

In the meantime, I don't blame Nurse Sis for heading to the back 40 to get some much needed rest - I just wish it wasn't necessary.

Thursday, February 17, 2005

Walkers Are Cool!

We actually got in to see an Orthopedic M.D. yesterday. I don't know if he's a surgeon or not - what I do know is that his card says "Team Physician, Sports Medicine". ME? and what would the name of my team be?

I waited next to a six foot ++++ guy who'd jumped up to make a basket and came down wrong. Yeah, yeah -I know what you mean! and my injury? Oh, I - uh - kinda - uh tripped -he-he, going down the stairs and twisted my knee cap half off. Couldn't even admit to skipping (is that still a sport?).

The doc twisted, pulled, flexed, de-flexed and decided an MRI might be called for. Make an appt. for it and then come back in - probably in three weeks, or so. The doc left to write an RX and my basketball buddy walked by - on his way to get an MRI -with Surgery scheduled for this Fri. That dude is going to be back on the courts while I'm still hobbling around.

Nurse Sis insisted that with two canes I looked like an accident waiting to happen. He offered crutches - or a Dreaded Walker!!!! There are a couple of medical supplies that I associate with old, really sick people..My One Way Streets of no return, if you will. The first was oxygen - I fought against getting that until the day I could barely breathe. It wasn't half bad after I got used to "Hal" sucking in air and sounding like he was coming after me. I didn't need him more than a month or two.

Now the Walker...Nurse Sis called around until she found one fairly close to home. She went and got it and I went to take a nap. When I woke up it was sitting there like a bike on Christmas morning, so I reluctantly decided to take it for a spin. Man, let me tell you that thing is a go-er. Two wheels, two rubber tips and some chrome - what's not to love? Guess I'm still dragging my right leg behind, Frankenstein style, but Nurse Sis is working on that with me.

It is hard to know when to give in to the pain and when to bite my lower lip and "suck it up". Some days I'm definitely not as graceful about it all as I'd like to be. I lashed out at Kid Sis the other night over some stupid cat liter - I can be known to sit and feel very sorry for myself - all the time knowing there are a ton of people with much worse problems.

This trying to get healthy and feeling better is hard work - but, for just now at least, I will accept my new walking companion - may we have a brief, intense time together before I make it obsolete.


Wednesday, February 16, 2005

Limpy Didn't Make It

Limpy (me) got grounded. I had to stay home from my first fun trip in almost three years.


That would just be more weight to take off and, in the meantime, more to lug around. Okay, try to keep up here - I'm going to go pretty fast!!!!!

I was to fly out Mon. a.m. but couldn't take my Walking Stick (too much like a weapon!). So Sun. evening off we went to the drug store and bought a cane. I still had to hang onto shelves - empty or full - to keep my balance.
Kid Sis went back and got another snazzy red cane. Now, I really looked like I had a drinking problem. My knee would not support any weight - it was a nondiscriminating knee cap - it would buckle forward, backward or to either side. I'd yell out an "auuugh" - just as the pain hit. I sadly called Nod. He'd been expecting my call. Seems that one by one Gimpy's knees had done the same thing!

We all decided that a visit to the Emergency Dept. the next morning was more prudent than a trip to the airport. Besides, Phoenix was rainy, wet and dreary. They said I wasn't missing much there, so I may as well go take care of myself.

MAJOR UNIVERSITY EMERGENCY DEPT. arrival time 9:45 a.m. Departing time 4:00 p.m. We had a three hour wait to even get back into the Dept. There were screaming babies, drug addicts begging to be seen, sick people to the left and the right. Nurse Sis and I thought this was the fast track through the system - like One Stop Shopping. We'd get in there, get an MRI, see an Orthopod, maybe even have surgery.
WRONG...We got 5 X-rays, seem by an ER doc and told to make an appointment to be seen hopefully within a week or so and - oh, by the way, don't fall you could really hurt yourself. (Do you think?)

Best part of going there: I came out of X-Ray only to hear that there had been a huge cockroach scurrying around the halls. Luckily I was in a wheelchair with my feet up! Just as a man walked by in nice slacks and dress shirt I yelled, "there it is." Without breaking his stride, the man brushed the bug off a leather seat. It flew about eight feet - passed an open door and straight down the hall. Still keeping in stride he walked over and with perfect timing, smashed it.

Amazing - Have you ever seen those puppies go? They are FAST. A few of us applauded . The guy turned around, smiled, said something like, "it's a big old building", and went on down the hall.

The absolutely, positively, best part of this story? When he turned around we saw he had on a big, black eye patch. With only one good eye the guy had nailed a cockroach. I couldn't do that with my glasses on, a can of Raid, and a frying pan.

We went and got a Margarita.

Sunday, February 13, 2005

Goin' to the Dogs

More about Hero? No way...I'm talking about REAL dogs (hope no one tells him what I just said). My brother asked me if I wanted to join them over in Phoenix for a "Snow-bird" vacation. They are tired of cold days, single digit nights, dirty snow on the ground, etc. I'm tired of watching rain come through my ceilings - so away we go.

We will be going to the Dog Races - them nightly - me, not so nightly. I prefer pulling the "One-armed Bandit" and since there just happens to be two Indian casinos in town, I'm in luck. I'm a gamblin' kind of woman. That's why I took my chances with Radiation and Chemo against all odds. I'd say I hit the jack pot on that one, even if it took down to my last nickel and then some.

We will be quite a threesome. I can only hope Phoenix is ready for us - there will be Gimpy (my sister-in-law with two bad knees and only one cane) - Limpy (me with "trick" knee in brace and cane) - and Nod (my brother who often needs oxygen because of his emphysema). Just thought - maybe we should just jump to chase and call an ambulance instead of a cab in case one of us goes down. We could put Brother in the middle and both lean on him but we're afraid he'd snap like a twig.

I suggested we wait until we were all feeling a little better but that was vetoed. "Let's go while we still can - gracefully or not," was the final vote. I fear getting through the airport at the crack of 11:00 am tomorrow. I can't find pants loose enough to pull up past my knee brace which has metal rods in it (sure to sound the alarm). Any shoes which give me support have to be tied and with my brace on I can't lean over that far. If you see a naked lady in an airport tomorrow - have pity. She may well not be insane - just trying her best to cope with an insane world.....
Love and Light..... Mom. I'm off to see the Dogs. Back next Sat. or so.

Friday, February 11, 2005

A Healer?

Did any of you watch ABC's "Who Is John of God?" Thurs. evening on Prime Time. Three years ago I well may have kept the remote on full steam ahead, looking for something more interesting. In fact, three years ago I probably would not have had my TV on. I was simply too busy to watch more than a couple of shows a week.

"John" lives in the heart of Brazil. It took the reporter hours of riding on what looked like dirt roads to get to the village. Once there we saw dozens of people with all types of physical problems walking, being pushed in wheel chairs, limping toward one particular building. They were all wear white, per John's instructions.

He said he runs the energy of different deceased doctors through his body. Apparently he doesn't know who is going to show up for "work" on any given day. The treatment varies depending on the patient. Some say they are healed, some think they are, and some have had no change in their physical problems - but, I will say, they all LOOKED incredibly peaceful. Part of the regiment was to meditate hours a day and it certainly worked.

People stayed two weeks and received various reports from tests done upon their return to the regular system. It was interesting to note that the M.D.s didn't just cut John down as a money hungry quack. A lot has changed over the last 20 years. East/West Medicine IS integrating.

I'm fascinated by his story on many levels. First, I was told I had a brain tumor that was inoperable - at least locally. Had we not found a university hospital and a very progressive Neurosurgeon willing to take on my case, I might have found myself at John's place.

Secondly, during the active phase of receiving Radiation and Chemo I was doing a lot of spiritual work on the side. For starters, I was in a meditation class, I was grounding, running energy, bringing into my body healing Light. I had taught many, many people the how to's of all these techniques and more but forgot everything the instant I was diagnosed. Friends and colleagues stepped forward and in some cases seemed to come out of the woodwork to help me.

I don't want to be discredited as a wing-nut, so, suffice it to say that I believe a lot more goes on "behind the scenes" than in front of the camera. Son was working the camera 99% of the time, so until today was clueless about what Mom was doing in my spare time. (Hi, Son!)Mom'

(EDIT: I haven't done an edit before but feel it is necessary- see today's first comment. In the above paragraph I said Son was "clueless" about my many non-traditional modalities. It was a poor choice of words. I'm sorry, Son. You're right - I knew that you knew what I was doing - so you were far from clueless. And don't worry - I might be half a State away from you but I most certainly will not miss a PET CT or an MRI appointment.)

There was some showmanship going on last night. But, at a minimum, John creates a space where anything is possible - where deep inner peace can be found- where a healing can take place, be it of mind, body or spirit. I hope it doesn't cost a ton of money for the two weeks, it doesn't have to.

Thursday, February 10, 2005

While the Cat Was Away...

...the mice worked like crazy. Years ago I was an assistant hospital administrator. It was back in the days when it was fun to run a 200 bed hospital (insurance, the joint commission and a few other obstacles took the joy out of the job). When the administrator was "out of the House" the buck stopped with me. I was determined to do such a good job that no one would miss her. Thus, this little mouse worked her butt off.

Little different these days. Both Nurse Sis and Kid Sis left on a business/pleasure trip. I have done the bare essentials - which does not include doing dishes. IF I run out of dishes, I'll consider starting the dishwasher an essential.

Kid Sis sent me an e-card today - right after "thinking about you" she wrote "Don't forget to BLOG"... Okay then - Blog? Start Income Tax Prep Work? Blog? Start In......

Actually, it's really cold in the house, and Hero is still at the foot of my bed. I must have left the electric mattress pad on when I got up to answer the phone at 7:00 am. and it's almost 10:30 am. Hummm...Blog? Bed? Blog? good night ! (or would that be good day?)

Tuesday, February 08, 2005

Spitin' Tacks Mad

Did you ever get so pissed off you wanted to yell some great clever obscenities into the phone and finish with,"and I'll never call YOU again."?

Well, that's what I WANTED to do but I need to get into that office - so, I just said, "Fine, FAX me the questionnaire." My pain management doc finally recommended that I see an acupuncturist. He wrote me out a prescription and everything. Said I was ready. After months and months of blocking nerves, buckets full of different pills, and pain up to the Ying-Yang I was finally good to go.

I was really excited. This was going to be my first chance to start rebuilding my overworked immune system. It was going to give me increased energy and a sense of well-being. Look out Lance, I might even buy a bike!!! All I had to do was pick a time.

Today I finally got the gatekeeper on the phone. 1st clue I was new - I couldn't say the doctor's name - it was three stupid letters long and I couldn't pronounce it! Admitting I was a new patient after that seemed redundant. BUT, I was only new to that particular office - I'd been in their computer system since July. So - HA! - When can I come in?

She HA-HA'd me right back - I still needed to fill out their questionnaire. Even if I had a Pt. I.D. Number, my insurance had not changed since August, all my medical records were available at the touch of a screen - SHE had to receive my FAXED answers and decide if I was "Acupuncture worthy". If I'd had a needle, at that point I swear I'd have started looking for my own points.

FAX arrives at 4:20. Two pages long. Date - Name - Home address - Work address, E-Mail...
Four lines about my insurance coverage - Pt. I.D number....
Page -2- Past diagnosis - other problems - medicines ...
Want a copy of my insurance cards (I'd have to go Kinko's in the morning for that).

THESE PEOPLE NEED LIVES - they need places to go and people to see - they need to put my four digit number into that stupid computer and watch it go to town!!! They need to stop driving patients absolutely flippin' mad.

They do want to know my treatment goals. Obviously my goal is to get well and NEVER, ever fill out my name, rank and serial number for this organization again.

Whew! This helped a little - sending the FAX back tomorrow should help more and by the time I have the appointment with the doctor I won't remember... wait ... this sounds like childbirth!

Sunday, February 06, 2005

Can You Believe It?

Hero lovin' that avocado Posted by Hello

Look at that smile on his face - the glazed eyes - Hero is in Puppy Heaven. The crop is in - an avocado fell out of the sky just for him!!

Or so it would seem . Actually, it fell from the next door neighbor's tree. The tree is 100 years old and supposedly has the best avocados around. This one is 6" long and fat - it's the biggest one I've ever seen - and the picking season usually begins in April.

By then he could be huge (but as a friend pointed out, have a very shiny coat). The idea of him being hit by one of these bombs has also crossed our minds. We're working on a chicken wire fence idea to keep him out of the area.

Humans are such kill-joys!

Hero's six inch avocado Posted by Hello

Friday, February 04, 2005

Going to IHOP

Since New Year's Day (resolutions and all that) we have been on the Adkins Diet. Kid Sis, Nurse Sis and Mom have all done our best to be true to the "No Carbs Oath". I could take or leave cakes, pies and chocolate, but pass a cookie, doughnut, or helping of mashed potatoes too close and it's a goner.

I had gained 46 lbs. by the time Chemo was finished. This was more weight than I'd gained TOTALLY during my three pregnancies. Last summer I had managed to lose 16 lbs. also on the Adkins Diet. The girls thought it was a hoot to see their usually thin Mom on a diet. This time none of us have found much humor in our weight loss program. Until today I have gained and lost the same two lbs. every few days. Kid Sis has not done much better.

Today the scale showed me up three additional lbs. "That's it!!!! I'm off the diet as of NOW" I declared, storming out of the bathroom.

A few minutes later a voice from upstairs yelled down, "Hey Mom, do you want to go to IHOP for some pancakes?" We got ready in record time. Nurse Sis jumped on the scale as we were heading for the door. "Oh no! I lost two lbs. No pancakes for me. I have to stay on the diet now that it's finally working," she declared.

Later today we were watching Oprah make wishes come true for a few people. I said my wish would be for Dr. Phil to arrange a whole package of weight loss, nutrition, exercise and make-overs for me (first, since I thought of it) and others trying to get back on their feet after almost biting it. Wouldn't that be cool?

Thursday, February 03, 2005

Chemo Hair

I have needed a haircut for over one month. Yesterday, after the doctor's appointment, Nurse Sis drove me over to see Shawna, a sweet, perky, young hair stylist. She had cut my hair before and I'd been thrilled with the results. But since she was a long way from our house I used someone close by for "quickie" trims. My hair just got straighter and straighter.

Think I have to back up here for a minute. Up to age 5 I had naturally curly strawberry blonde locks. We moved to a higher, dryer climate and my hair lost it's curl and started turning brown. From then on it was a reddish brown (even when it had to say so on the box!) and eventually reddish blonde(different box).

We didn't know what was going to happen when I got to the "impressive university". The local docs said that I had an inoperable brain tumor. The Chief of Neurosurgery said bring her in. I figured I had an 85% chance of getting my head partially shaved. The thought of having half a head of full length hair and the other half bald made me nauseous - so, I took control (see Control Freak mentioned elsewhere).

I got a punk cut - we left it about an inch long and jelled it into little spikes. If I was going down, I'd go down looking like Susan Sarandon. All the techs, nurses, etc. and there was a bunch of etceteras loved my hair - and left it alone. I had my cyberknife procedure (see Son's Chapter 6) and when home with my inch of hair, feeling just a little silly.

At my first Chemo appointment I was warned that I could "experience hair loss" in about ten days. On day nine I woke up with what felt like feathers in my mouth - it was hair. Once again I wasn't liking the thought of what was coming next - so, guess what? I got a buzz cut - you can't lose what you don't have! Well, I think the buzz cut worked - it scared the rest of my hair so badly it stayed put. In fact, it started to grow out again.

Eventually it did all fall out and stayed out for months. When it started growing back in it was grey (Why of All Things!) but CURLY. Kid Sis and I tried to dye it my usual reddish blonde and it turned BRIGHT orange-red. Other things they don't warn you about.


There, hopefully I've just saved someone some money and lots of embarrassment. What worked for me was a color with ASH in it (check with pros about this, please).

So, finally you're up to speed (bottom of paragraph one)... I begged Shawna to give me a cut to bring out the natural curl she'd found before. She pulled, she tugged, she lifted, she snipped away and gave me her final report:
- Straight hair 17 - Curls -0-
The rest of her analysis was much more promising: the change in texture was a good indicator that the Chemo was out of my body. My God, this young 'un is so smart!! (Turns out her Mom has cancer and Shawna has done a lot of research on hair.)

Last night I realized that my finger nails had stopped splitting and peeling off like mica - even my toe nails were starting to look better! Seventeen months after Chemo STOPPED my body was continuing to reclaim itself. The healing process is not over...the possibilities are endless...the Cavalry is on the way!!!!!


I may fill a book on the crap that can happen that no one tells us about - in fact, how about a few lectures in medical schools about what REALLY happens to the PEOPLE they see? The fear, the wondering if a tingle is a good or bad thing, the not knowing our bodies, the holding of our breathes until after the next MRI's or CAT scans, the touching a sore spot and wondering if...

Tuesday, February 01, 2005

Do Something

My only sib, a brother, outranks me by four years. (He was also Mother's favorite, but that's another story!) At times I would stew for hours, days, weeks, trying to make the right decision. I would look at something this way and that way..running all the what ifs into the ground - absolutely terrified of making a mistake.

His thinking was always logical and precise (he became a Marine and then an engineer). I would drive him batty with my futzing around...finally he would loose it and yell, "FOR GOD'S SAKE DO SOMETHING - EVEN IF IT'S WRONG.

Today was a good day for me to "Blog". Tomorrow I have to go see the Pain Management M.D. about my Shingles. Today I didn't have to shower, get dressed, do my hair or spend the afternoon getting to - sitting in- and going home from - the doctor's office. So, sit down, open the page and get busy typing...right after breakfast...right after I get dressed...right after, "Oh no, Hero, just because I put on the tennis shoes it doesn't mean we go for a walk. Oh, it does? Okay, but just a short one." By then it's Oprah time, then Dr. Phil...then dinner.

I Googled the Lance Armstrong Foundation site last night. It gave me pause to think more about my life. What if this is as good as it gets? What if my knee continues to bucket under me whenever it wants? (My uncle had a "trick ankle" he would tell us kids about. He would make us laugh with stories of how it would cave in on him and he'd go sprawling. I don't find my "trick knee" nearly as funny...perhaps I'm just losing my sense of humor.) Anyway, the LAF people have their acts together. I found out several details my M.D.s never discussed with me. I think the surprise of me staying alive may have thrown them off their stride.

I know I need some good after-care. I need to make some positive changes in my life and don't know where to begin. Too much time has been given to the "C" word and as I approach the two year mark of my cyber-knife procedure I am more than ready to move on. So, already, do SOMETHING, even if it's wrong.