Wednesday, March 31, 2010

Too Many Candles

Older Today

Birthday today, celebrated with some old friends and visited visited visited.  Enjoyed myself and packed all my troubles in my old kit bag and smiled smiled smiled.  Heard from many remote friends/relatives this week, makes me wish I was able to keep in touch better. 

Something about laughing and talking about old times was very relaxing.  Guess that makes me a geezer.  Just a good day.

Tuesday, March 30, 2010

Once More Into The Fray

Valkyrie Resolve

Heading back to one of our clients tomorrow.  Determined to get this visit done even though I am having difficulty right now driving 30 miles to work and just walking and getting up from a chair.  Heard Wagner's Ride of the Valkyries on the radio on the ride home, so blasted it while I drove as it matched my mood.  Very good driving music, but I found I passed a lot of people on the interstate while playing it.  Gets me in true kick ass mode, although my "kick ass" is not as powerful as it once was - the ravages of age and illness.

Can't take medication for the leg pain and be professional, so just going to breathe deeply and get through it.  Biofeedback helps with this, at least for a short while. I have accepted the fact that I can't drive the two hours up and the two hours back, so a co-worker kindly is going to drive me up and back.  I just need to drive the 30 miles into town and back.  Hoping I can make it down the corridors OK, since the legs aren't working quite right.  Hoping I don't whimper like I'm doing tonight, very unprofessional and whiney, but sometimes whiney wimpy whimpering is what I need. 

Wondering if I got a cane if it would help, but I don't think it really would.  Both legs now are bad, which is what happens when I don't just lay around and rest like I've been told to.  Other nerve issues are getting worse with the pudendal nerve, which is nauseatingly painful.  AND The Belly decided to act up today.  Need to apply that Valkyrie mojo to my whole body - hiya ah ho!!!.

Mom is still feeling very ill;  I told her if she is still running a fever tomorrow evening (which would be the fourth day since she got sick) we are going to the ER, no argument.  Hoping I don't need to face the ultimatum, hoping she is better tomorrow.  She felt better today, actually sat and did her crossword puzzle for a while, but the fever is still there which concerns me.

Work is getting quotes from other health insurers to see if they can get a more competitive rate.  The health insurers needed a health history for the last 10 years to help rate the group.  It was awful; I had to make a spreadsheet to hold all the explanations/doctors/dates they needed.  Depression was one I didn't have to check, but I am going to have to start calling myself mentally impaired because I'm NOT depressed.  After looking at that spreadsheet I thought - what am I doing still working??  Stubborn stupid valkyrie mojo! With me in the group I can't see them getting a good rate - makes me feel so responsible in a bad way. 

This is at least the fourth year in a row with double digit percentage increases from Anthem Blue Cross Blue Shield - probably over a 100% total increase in cost if you take what they paid eight years ago when I started there to what they will pay if they renew, plus the benefits are so much worse.  Anthem is definitely a for-profit insurance company, not friendly at all for small businesses like I work for.

Sunday, March 28, 2010


Not a Good Thing

Last week my younger brother had the flu.  Hard as he tried to avoid giving it to her my mother now has the flu.  She is very short of breath and this is just day one.  She won't go to the hospital, where she could get anti virals prescribed and get checked for pneumonia.  She agreed to call an ambulance this evening, but when they got here she declared she did not want to go to the hospital, although they said one of her lungs did not sound right.  Big sigh of frustration.  Big frown of worry.  Hoping this will be OK - have had to take her in the past at 2 or 3 in the morning to the ER after she refused help the evening before.  Maybe I'm over cautious but I have seen her get really bad really fast before.

Ambulance rules have changed since the last time I had to call them for Mom's breathing issues a couple of years ago.  Then the ambulance crew would give nebulizer treatments in the home, and I think that was what Mom was looking for.  I tried to persuade her to go to the ER and get a treatment but no go, as did the ambulance crew.  They made her sign a statement that they asked her to go to the hospital and she refused, and then required me to witness it.

I checked the Missouri flu website, and flu cases are up this week compared to last, and the number of senior citizens with flu are up markedly.  The federal flu website also urges seniors to get antivirals as soon as possible because of the severity of the flu virus' going around this year.

My nephew who has been so sick on his return from China has been told he might have had a SARS like illness.  Another classmate who was on the same flight is also sick, but not quite as bad.  Not looking to be a very good year fluwise so far.  Hoping that my flu shots are good for what Mom has, so far this year not even a sniffle.  At least something works right with my body!

Going to have a sleepless night tonight, checking on Mom every so often, but better to be reassured than too late to help!

Thursday, March 25, 2010

The Color of Pain

It has a "flavor" too

Pain has become a too familiar part of my life the last few years. For me pain has aspects that hard hard to define, but distinct. I feel almost like an officiando of pain, just like some people know all about wine and all the subtle nuances and sub-notes of the taste and appearance.

Sometimes pain is warm fuzzy and familiar with a hint of vanilla. Sometimes it is jagged sharp bitter as alum and just plain scary. It's like a stinky old stiff sock that needs to be washed, or the all encompasing embrass of an itchy robe. The red wash of pain turns white hot when it goes into the stratosphere of pain, and the cold blue that my fingers get as the pain heads to the worst.

Today has been an red rimmed orange day, merging into pink, with purple overtones. It's sandpaper on toothpicks with a soldering iron searing into my legs. Hot cinnamon vinagrette flavors it all, making my skin hurt. Ready to rest and get to tomorrow already.

Have a bone density scan tomorrow, first since radiation therapy six years ago. Not sure what will show up, I'm guessing its a DEXA scan - its supposed to be of the spine and hips. I've shrunk in the last few years at least an inch; I'm afraid if I shrink too much I won't be able to sit in the big person chairs at work!!

Wylie Coyote Kind of Day

I Keep Trying

One of those days, one of those weeks.  Head hammering like an Acme Anvil dropped on it, nerves on fire but pain medication makes the head worse, so will try not to take any for awhile. I'm getting used to hurting so I just need to toughen up some.  Accomplished a lot today, but am paying for it this evening.   Not sure somedays why I even make the effort to do anything, because someway somehow it backfires, just like when Wylie Coyote tries a new surefire way to catch the Roadrunner. 

I worked late today getting my new office space somewhat in order.  They just moved my stuff in to the former occupant's desk(s) and only removed the former occupant's stuff that was ON the desk(s) or on the walls.  My stuff, a lot from the recent implementation was sorta strewn all over the place.  I cleaned out drawers nicely and neatly and put the stuff in my former office holder's new office.  I even assembled one of those wire Pendaflex file hangers for her drawers (she is out of office this week) which for me is going above and beyond the call of duty - I hate those things with a passion.  I just didn't want her to have to come back to the office and then do all that too in addition to putting things away.  She's been really good natured about the move since she works from home mostly, but she got put back in a way worse space, although it is much quieter and out of the way.  I have partially rearranged my new space so it is more conducive to how I work, and may stay late tomorrow (I guess today) to hang pictures and arrange the heaviest thing there - a big wooden desk.

I now have a good sized pile of shredding to put in the shred box, I keep everything from an implementation until about a month afterwards to double check that I have covered everything that needed done, so this can be a pretty good sized pile of paper at the end.  We start the next implementation training schedule towards the end of April.  Hoping my wacky leg nerves will be better by then.  At least there is a clear spot or two on that big desk.  I need more cabling to safely connect my PC to the LAN, right now there is cable accross the floor.  I did find enough telephone extension wiring to put the phone safely where I wanted it.

Trying to eat small meals more often at work, but keeping anything down is a struggle.  Wasn't successful yesterday, but today was a little better. Will keep working on it to see if it makes a difference.

Not much going on in my world, just trying to work.  My nephew-in-law got back from China, and promptly had to go to the hospital as he brought back some kind of Chinese bronchitis.  He thought he caught it on the 13 hour plane trip home.  No matter how completely the air is cleansed in an airplane, it is impossible to avoid exposure when people are hacking, sneezing, coughing, or vomiting in your general vicinity.   Probably next fall's flu virus just being premiered before the prevaling winds bring it over from Asia to America.  He found the people very kind and gracious, just wished he hadn't caught whatever bug it is he has.

PS - The Headache is not good this evening, so just ignore the misspellings and typos. The hands and the brain are not coordinating..

Monday, March 22, 2010

One Day's Difference

Snow Now Gone!

Really lovely weather today, can't hardly believe that the snowstorm of last weekend happened.  Left for work with snow still on the ground, covering the yard, ice still showering down from the trees.  Came back from work this evening, and only a few little bits of snow were left.  The robins are happy, and we had two meadowlarks that were very bedraggled and sad about the snow so I'm hoping they are back to nesting now.  Looks like all the leaves in the yard tried to wash up on my back porch/patio though.

At work, got a different room and desk this week since apparently last week while I worked from home it was "Moving week" at the office!  I laugh everytime it happens - we play musical desks about every six to eight months where I work.  I really don't care where I sit (except next to the lunch room when I am nauseous is not so great) but I got moved out of the office of many lights to a nice warm room (actually hot in the summer) with fewer flourescents and some soft nice natural light.  My only request this time was that I NOT be moved to the super cold conference room area.  You can practically see your breath in there, and I think I would have to wear a winter coat all year long.  I think this one will be nice and toasty.  Yeah!  At least until next moving week, eh??

The new employee the trainer trainee is EXCELLENT!  I am holding my breath that she continues to like the company and the work.  She is bright, a quick learner, good sense of humor, and a great communicator.  Woo Hoo!  She has two school age boys, so I am hoping that the travel part of the job won't be too much for her.  I have such a great crew to work with: the programmers are fantastic, and the clients are great [even when I get client fatigue from being there too long], and now finally someone trainable with the ability to do the job!  Life is good at work, if I can just get the body to cooperate with the brain!

Not a great day for me pain wise, but am just sucking it up and moving forward.  Resting last weekend helped, but still very painful for me - especially driving. Can't take the meds and drive to work, so nothing until I get ready to go to bed. The Soma takes away a lot of the nerve pain, but I am left with pretty weak legs, so not too functional lately. Ah well, maybe tomorrow all will be normal!  After all, look what happened to the snow in one day!

Sunday, March 21, 2010



I'm confused - this isn't supposed to be like this sooo far south.  This is the view out my back door this morning.  Starting to melt a little today on the roads.  Maybe spring will be here next week.  The poor robins had to find snow free spots to hide, and there weren't many.  I think they slept under my car, poor things!

Good weather to catch up sleep!  So I'm going back to snooze land as soon as I cook something for everyone else to eat.  My niece and nephews got back home OK in the snowstorm yesterday and I'm grateful.  Have a couple out there traveling today, hoping the roads are OK and the airports open.  Hoping no more snow today, but the weatherman says it may come back around later.  Sigh.

Saturday, March 20, 2010

A Happiness Moment

Good End to a Bad Week

The furnace broke, I started having bad neuropathic pain, I burned wood and put logs in my fireplace which are heavy and made the neuropathic pain worse, I wasn't able to work for a couple of days, and I was dog tired. Not a great week, but today ended on a high note!
My niece and her two sons came to visit for a couple of days during their spring break. One son is junior high age, and one is first grade age. I have a special place in my heart for all my nieces and nephews and great nieces and great nephews, maybe a little more than some aunts because I don't have any children of my own. Luckily we had the furnace fixed right before they came down.

We had a pizza party and they camped out at my brother's cabin (their grandpa) and had a hot dog roast on a bonfire, and the boys basically did whatever they wanted and ate whatever their mom would let them eat! They played kickball in the yard, and video games at grandpa's. I was so sick when they came that I sat and talked with them, but didn't get to visit as much as I liked. Today was their last day with us - they were going to a cousin's house this afternoon and spending the night there.

I had to suck it up and travel today to a client today, and have been in quite a bit of pain all day. The visit was very productive, but it was very trying for me because I was not able to take sedating medication and drive. The best part of the day was when I came home I found the nicest note waiting for me on my computer desk. It said - See you in May [when their school year is out] Thank You We Love You with the Love in a big beautiful heart and the O in you replaced by a little heart. How nice, and from boisterous boys yet! Made my day and made my week.

Hoping for a good weekend despite the predicted lousy weather. I plan to stay drugged for the most part, catch up on my sleep, and get ready for a full week next week!

Thursday, March 18, 2010

Nerve Agony & some Relief

Pudendal Pain and Sciatica

My neuropathy has been going off the scale painwise the last few days.  Went to urgent care Tuesday afternoon just to make sure I didn't have a urinary tract infection or a problem with The Belly.  Sometimes I get in so much pain everywhere it get's hard for me to determine what is happening.  When the tests for that came up negative, I then got an appointment with my PCP yesterday to see what I could do for the nerve pain.  He presecribed a medication that is in the muscle relaxant class, but seems to disconnect the nerve pain somewhat from the brain, called Soma or carisopordol. 

I am down to where it is very painful to walk, lie down, stand, sit, or drive a car.  I think its a combination of all the walking and standing I did at the client's last month, the prodding and poking at my cancer exam, and trying to clean house like a normal person (mop and vacuum).  My feet are freezing, but the pain is like fire through the bottoms of my feet.  The muscles in my right leg are all bunched up (the right side is more painful this time) and I have nerve pain right through the middle of me in the "saddle" section.  The percocet I have doesn't even touch this level of pain.

My PCP said that lack of sleep lets the pain build up because sleep lets the nerves discharge and the muscles rest.  Well, I've not been able to sleep well for months, but last night I was able to.  He said I need to just sleep for a couple of days, take the percocet and Soma and see if I can get the aggravated nerves to go back to sleep.  Not sure if I can, we are short handed at work.  Not sure if I can work, I am so in pain. Augh!

I was able to work from  home yesterday, but the problem is that sitting up very long is very very painful.  I haven't called in yet.  I feel so bad for my bosses.  I just get myself where I maybe can be really productive and something like this happens.

My PCP and I discussed my longterm prognosis with this being from radiation side effects.  Not good.  Probably more pain, more disability in my future.  However, I did sleep last night with the Soma. I am in quite a bit of pain now, thinking I should take another one (one every twelve hours is the script and it's been over 12) but will check with the office first.  I wonder if it helps headaches?  The percocet makes The Headache worse.  My PCP seems to think I have high tolerance to pain, but I feel like my pain tolerance is very low for me.  Maybe he sees more people with pain, and in comparison I'm tougher??  Or maybe he just wanted to boost my spirits.

Here is a pain scale from the Pudendal Pain website I found, it is one of the best pain scales I have found out there because it describes in detail the levels, although some migraine sufferers I know can have pain in the 9 or 10 range also.  I think I am at an 7 with the nerve pain going towards a non-functional 8.  Maybe I should take the medication, eh?


Comparative Pain Scale
No pain. Feeling perfectly normal.


Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.


Very Mild
Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.

Very noticeable pain, like an accidental ut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.


Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.


Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.


Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.

Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.


Unable to engage in normal activities. Patient is disabled and unable to function independently.




Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.



Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.


Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.


Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

Monday, March 15, 2010

Fire Tender

Furnace Woes

Today (really early early this AM) my furnace died.  It is only 10 years old, and the "cool air intake blower motor" decided to quit.  I will call the heating and cooling dudes tomorrow morning and get them to come out, order parts, and fix it.  If it had only waited a few more weeks, I might not have needed the repair until next fall.  Big Sigh.

Tonight I am tending a fire in my fireplace insert (a wood stove inserted into the fireplace space) and now have the house temperature almost up to eighty degrees.  My mother, being elderly, gets cold very easily and with The Headache I also cannot tolerate cool temperatures, so we generally keep the house at a tropical 82 degrees all year long.  In the summertime with high humidity I drop the temperature lower with air conditioning because my mother has difficulty breathing, but otherwise I live in a pretty warm house.  I am glad so far we have been able to afford the luxury of warmth.  The people who owned this house before me heated only with wood using the fireplace insert (it has temperature contolled blowers which helped keep the temp even throughout the house) but my mom has allergy issues with wood smoke, so I only use it on the coldest nights or in case of emergencies like now.

The Headache and The Belly are not happy with me lifting good sized logs to put them on the fire.  Neither problem likes the movement or the exercise I guess.  My nerve pain in the pelvic region is on overdrive and the nerve pain in my feet is excruciating.  Not sure if this is aggravated by the heavy lifting or if it just the result of being poked and prodded last week during my cancer checkup, but my legs are very weak too which happens when the nerve pain gets bad.

I'm sorta excited about work next week because my sweet boss hired another trainer to replace the one who only lasted a couple of weeks! The Big Guy hit one out of the ballpark this time I hope! I shouldn't have to travel right away, and maybe can get her oriented to the job better than the last gal who only lasted a couple of weeks.  I think I work for the best company in the universe!  This new lady has tons of experience in programming and software support, just no medical business experience, which is fine.  I can train her in medical office terminology and business practices, there just is no way (like with the last gal) to train someone in the mindset of thinking like a computer works!!  I'm so glad she is on board, praying that she likes the job and likes to travel.  Woo Hoo!!!

Saturday, March 13, 2010

Sixth Anniversary

March 2004 - March 2010

Today I bought myself a little gift, which I do every March in celebration of my continued being. This is the anniversary week of my endometrial cancer diagnosis.  I am now six years cancer free.  Yeah!!!

It was early March 2004 when I had a hysterectomy, 2 weeks after an endometrial biopsy showed endometrial hyperplasia, probable endometrial cancer.  I had a total abdominal hysterectomy with bilateral salpingo-oopherectomy (TAH BSO) which means removal of the uterus, cervix, fallopian tubes, and ovaries.  The pathological staging came back as Stage IC, grade 2 endometrial cancer and the surgeon's staging was Stage IIB, grade 2 probable cancer of the uterine corpus [deeper than the endometrial layer]- the treatment was the same, so not sure if the staging really mattered.  The cancer had spread since the biopsy into the cervix area which is why the surgeon staged it as IIB, but the path report said it was just an external spread from the biopsy path.  I prefer the IC designation since the probability of a cure is quite a bit higher than IIB.

The surgeon said the cancer was about the size of a football, and was pushing downward on my bladder.  I had had symptoms for quite a while, but two years earlier had seen a gynecologist who told me I was just perimenopausal and didn't even need to have a checkup for a couple of years.  He was a real winner, not practicing anymore thank heavens!  I knew something was wrong, but kept telling myself  "It's just perimenopause!"  Sometimes you just need to listen to your inner voice.  I guess I just wanted a large blue ribbon size cancer! 

The radiation therapy was to ensure no recurrance, and it seems to have worked for that, no matter what other problems I have.  My radiation oncologist sent me an article this week on "lumbosacral plexopathy from radiation therapy" - maybe he has been thinking about my problems since the radiation dosing issues have come forward.  Lumbosacral plexopathy as described in the article is a rare side effect from high dose rate brachytherapy, where the nerve nexus in the pelvic region receives too much radiation for whatever reason and is damaged.  For some it means that eventually they lose the ability to walk.  My ability to walk long distances and to stand are limited now, sorta hoping it would stop at this point and not get any worse.  This is the first time I have gotten some honesty about what is happening from this practice.

Endometrial cancer is one of the most common women's cancers in the world, and is very curable if caught in the early stages.  Here is a list of some of the risk factors (I had quite a few):
• Diabetes
• Estrogen replacement therapy without the use of progesterone
• History of endometrial polyps or other benign growths of the uterine lining
• Infertility (inability to become pregnant)
• Tamoxifen, a drug for breast cancer treatment
• Never being pregnant
• Obesity
• Starting menstruation at an early age (before age 12)
• Starting menopause after age 50
• Colon or breast cancer
• Hypertension
• Polycystic ovarian disease
• Family history of endometrial cancer
If you have any of these risk factors, and have abnormal menstrual bleeding and/or a clear mucousy discharge, please schedule a doctor appointment with a competent gynecologist soon.  There are no real screening tests like the Pap smear for cervical cancer.  Every Pap test I have had came back normal, but the endometrial biopsy and vaginal ultrasound were the diagnostic tools that helped determine I had cancer. I had several years of problems that if my physicians had been more diligent (the cancer showed up on a ultrasound from 2001 but I was told it was a fibroid tumor) or if I had been more proactive might have been the warning signs that something needed to be done.

The Headache is very active this evening, with pain spikes driving through my temple.  I have had the stimulator turned down today, as the head was getting over stimulated so I guess I am just paying the price now.

Wednesday, March 10, 2010

Bad Headache No. 2 2010

Storms Bring Pain

Not sure if I have been doing too much, or if it is just the enormous thunderstorms that have been moving in all day, but I have been down for the count since about 3 AM this morning.

I'm too sick to drive, but not in enough pain to call an ambulance. The pain has migrated from my left side and has now included the right side of my head. This is first time its done that this year.

I have the stimulator on high, and have taken all the phenergan and benedryl I think is wise. I have percocet I can take, but it doesn't do a thing for the head pain so there really isn't any reason to take it unless I get truly desparate. Foolishly I flushed away my rescue Dilaudid last fall thinking I would never need it again.

My blood pressure is very very high, and getting higher. Doesn't bode well for me - a sign The Headache is gaining the upper hand. I'm tired, even though the benedryl/phenergan has had me napping throughout the day. Typical of The Headache, it can't be slept off like I used to be able to do with migraines.

Hoping if the storm system passes over me without a tornado snatching me up The Headache will pass too. Tornados were spotted about thirty miles northeast of here so I think they will miss us this time.  Ready for The Headache roller coaster ride to be over tonight.

Thinking of tornados, my brother and his (then) five year old son are tornado survivors. They were residents of the "Lucky Lady" trailer park  several years ago when it got hit directly by a tornado. It picked my brother's 80 foot trailer home up, turned it upside down, shoved a tree through the bedroom and down the hallway and desposited it on top of another trailer. I told him that was the new extreme sport, tornado surfing in a house trailer. You know God has plans for you when He picks you up in a tornado, says "Uh uh, its not your time" and puts you back down in an area of total devastation and you and your child only have a few scratches. Needless to say, they both get nervous when the weather turns bad.

Monday, March 8, 2010

Tired of Winter

Ready for Spring

I'm tired of dreary weather, and I'm ready for spring to be here.  I want green grass and warm breezes, shady trees and flowers blooming.  I'm also just plain tired, so spring come soon.  I'm waiting for the robins!

I'm at that tired point right now that I can't rest because of it.  The fatigue keeps building, and I just get more tired rather than more rested.  Wishing I was younger and had that stamina that wouldn't stop for anything.  Too tired for words and unable to fall asleep, a combination that is a no-win situation.

Diana Lee has published her newest Headache Blog Carnival about Opening Up to Family and Friends at her blog Somebody Heal Me.  As always there are some thought provoking entries.  I am so glad Diana Lee is able to coordinate this in spite of her own disabling headache condition.

Sunday, March 7, 2010

I'm Pixilated

Where's Harvey When You Need Him...

Thinking today about internal attitude. One of my favorite movies of all time, Harvey with James Stewart, not only makes me laugh it makes me think.  It's all about taking the alternative path through life, the road less traveled.  My favorite quote is:
"In this world, Elwood, you must be oh so smart or oh so pleasant."
Well, for years I was smart. I recommend pleasant.
—James Stewart as Elwood P. Dowd,
I would love to be able to wander through the world, pleasantly surprised by everything just as Elwood was in the movie.  I tend to veer towards the logical smart side of the world, to the point I sometimes don't connect with others as well as I should.  I have built skills over the years to shore up this weak point in my personality, but under stress I have to pointedly refresh my committment to "pleasant".  

I was a disgruntled young person when I was in my early twenties until I dissected why I was being miserable.  I discovered that everytime I was angry or disappointed I had made the decision myself to experience that negative emotion.  I decided if that was the case, why not make a concerted effort to feel happy and joyous and positive instead?  It made a great difference in my life, and still does to this day but the old negativity still creeps in when I least expect it. 

I am adjusting my attitude, putting my positive foot foward, thinking sunshiney thoughts before heading into work tomorrow. I do wish I had a Pooka like Harvey to stop time and whisk me off to parts unknown for a day of pleasant conversation, so I could rest and rejuvinate.  No R&R time for quite a while, and I'm starting to wear down.  Sigh....

Saturday, March 6, 2010

Over-Radiation Validation?

The Hospital Has Responded (sort of)

When I got home from traveling this week for work, there was a letter waiting for me from my radiation oncologist.  This is in response to my email asking them to check to see if I could have had been administered too much radiation.  I was courteous but firm in my email fully expecting the same "there is no possible way you could have these problems from radiation therapy" or "I would never prescribe radiation therapy to anyone if it caused problems like you SAY you are having" response that has been my experience from these physicians in the past.  I was surprised.

The gist of the letter states that reactions like mine to radiation therapy are rare (I'll give them that) and according to what was "prescribed" [notice they did not say administered or delivered] I should not have had these problems.  However, they are sending my records to the independent physicists consulting group that is working its way through their files for a full review, both of the external beam therapy and the internal high dose rate brachytherapy.  They ask for patience as a full review will take some time.  I wish they had taken a little more time when they figured my dosage 6 years ago, but I will try to be patient.  It's not like more time is going to make any difference other than me getting slowly worse.  I am glad for the independent review, and hope it will shed some light on my physical issues from therapy.  My luck is that it won't..

I am extremely tired and exhausted.  The Headache is not happy, The Belly is not happy, and I'm not able to do very much.  I have had a very very very very long week at the clients'.  Our clients are very good people, but the chaos of a computer conversion disrupts their normal work flow and creates havoc.  I am excellent dealing with this, but then our clients want me to stay and stay and stay and help, and there is only so much I can do as an outside vendor to solve their problems. 

Maybe I just need to start my own problem solving business.  Hmmm, guess I should start on mine first.  Bummer.

Tuesday, March 2, 2010

Family and Illness

My Mom

I have a circumstance in dealing with family and illness that, while not unique, is not one that is discussed very often.  I am the primary care giver for my eighty year old mother.  When I am not well, this causes an extra layer of concern for me.

When you help care for an older adult, there are things you need to be aware of.  Unlike children, they will not become more independent with time - instead they will become more dependent.  Unlike children, they are aware of the consequences of their caregiver becoming ill, and part of the consequences may be loss of what independence they have, and possible institutionalization.  Unlike children, their comprehension may be clouded due to age and illness, which increases anxiety and possible inability to cope with rapidly changing events.

My mother has had a series of small strokes, and has had cancer in the last five years.  She does not have a sense of hunger, and has to be reminded to eat.  She has cataracts and diminished vision.  She has advanced COPD and limited ability to do physical effort.  Mom can still cook, clean a little bit, maintain her own personal hygiene, manage her medication, and do her laundry.  My father died in 1989, so she does not have the support of a husband.  She enjoys doing crossword puzzles each day, and we have been working on a 3000 piece jigsaw puzzle for quite a while.  She worries about things I don't worry about, or even guess she worries about, and has some trouble with short term memory.  She needs help to dial a phone, even to call 911.  But she has many more years of living in her home/our home ahead of her, and enjoying the companionship we have, and with our dog Augie (well, really her dog Augie!).

I have brothers and a sister that help care for Mom when I am on the road or in the hospital, and that is a great blessing for me and my mother. She gets scared when I am ill, and I try to keep that kind of stress from her when at all possible.  Sometimes, as when I called the ambulance a couple of weekends ago, it is not possible but I try to keep it in the background as much as I can.  Thus the blog - she doesn't read a lot of internet articles, and she doesn't use a computer, so this is a way to vent without worrying her.  Sometimes my own stress spills over and that upsets her so I try to keep things as calm as possible in my home environment.

I don't have children or a husband to help me when I am ill.  My siblings try to help, but all of them have their own problems in their own lives, so I try not to bother them if I can avoid it.  I try to be independent, but I am sure if you ask other family members they might not see it that way.  If things don't get done at home, there is only me to do them.  I wish I had more energy, and I wish I was more able to keep up the house in the manner I was raised to do it.  There is a blessing that Mom has cataracts so she can't see the cobwebs in the corners of the closets or the dust bunnies under the couch!  I concentrate on keeping the floors and counters clean and the bathrooms decent.

Because Mom feels anxious when I am sick, she wants me to stay at home with her all the time and not be sick.  When I gently remind her we couldn't afford her medication or food if I didn't work, she seems to understand but we have this conversation over and over again.  I love my Mom, and I hate that me being ill makes her upset, and makes her anxious.  Its enough that it makes me sick, without harming her.

I have friends that say they would send their parents off to a nursing home.  As someone who has spent time around elderly relatives in nursing homes, these institutions have their place, but they are not a warehouse for elderly persons who have the ability to care for themselves with some assistance. The institutionalization of the individual that is inevitable in that environment is harmful to someone that has good cognition. I feel strongly that family should be the first resource for elder care, just as it was near the turn of the last century.  I just wish I was better able to care for my mother.