Sad Clown Kind Of Day

Wishing I Could Cheer Up

Not a good day for me.  I am overwhelmed with pelvic pain and leg pain.  I actually could see today where there might be an end to me being able to walk or drive. I am at the edge of where I cannot handle it, physically or emotionally.  The nerve pain in my feet is curling my toes and all I can do right now is hunker down and get through it.

The increase in pain medication has been good in a way and bad in others.  The background all the time pain is less, and some of the heavier duty pain has decreased - this is good!!!  I am doing more with less pain at the time I am doing it.  This is good and this is bad.  My pain stores get overloaded later and now I'm back where it is almost impossible for me to use my feet when driving.  Pushing on the brake pedal is excruciating.  The pain is up the legs and in my pelvic region and then up inside my lower abdomen.  Using the accelerator is almost as terrible.  This is bad. Sigh.

I am not sure how I will get to St. Louis next week to see Dr. House.  I guess I will just be tough and get there and somehow get back.  I wish I was wealthier because I would catch a plane there and back and at least would not have to drive four hours there and four hours back.  I may drive up one day and back another so I can rest frequently.  Hoping I don't have some kind of bizarre leg test while I am there that will make them go wonky...it would just be my luck.

I am bummed out, on the verge of tears.  I try not to break down because that doesn't help anything, and then I start the pity party, and then when it's all over everything is still the same as it was when it started.  I don't know what would become of Mom if I can't keep going, so stopping is not an alternative.  I think it is just a convergence of suckiness and sickness and pain all at once. I need to come up with some kind of innovative solution for it all....

I wonder if you can get a kick start for your legs, like on a motorcycle??  I could rev my throttle, get'em spinning and then off I would go!!!  Just like Fred Flinstone and that car he powered with his feet!  Now I'm feeling happier already.  I'll have a Yabbadabbadoo time running all the way to St. Louis!

Way Too Tired

Wacky Legs Don't Work Right

Very tired today.  I took my Mom to see her gallbladder surgeon to be released from her post surgery restrictions and for him to visualize her incisions and say they are healing fine (they were).  This only took five minutes.  We were scheduled in the morning.  I thought we will go get this done, come home, and I will whip into work.  Uh uh...was not in the cards today.

We got there ahead of time and waited and waited and waited and waited.  I was so tired I fell asleep in the waiting room.  Finally we got called back into an exam room.  Then we waited and waited and waited for the five minute exam.  The surgeon must have had emergency surgery or something that morning because he was running WAY late.  If they had just told us, go out get a snack, come back around one and he'll see you then I would not have been so aggravated, but since I was so sleepy aggravated took way too much energy.  We got out of exam room limbo around one thirty in the afternoon.  Augh!!!

Then I took Mom shopping for a bath chair.  I had been having a hard time getting Mom to take showers lately.  She has had several small strokes, and has COPD, and apparently has been having panic attacks in the shower and not telling me.  I happened to be making her bed while she took a shower last night and heard her crying and hyperventilating in the shower.  I went in and put a chair in the shower for her to sit in because she was shaking so much and helped her finish washing her hair, etc., and got her dried off with a towel.  She kept saying she couldn't breathe, but she was hyperventilating because she was panicking.  I sat and had a long long talk with her about how she needed to let me know if she was frightened by things like showers or the dark or doctors. 

She had not realized she was having anxiety attacks - she thought the shower was exhausting her and taking her breath away.  I told her that we would get a bath chair with a back and instead of having showers in a claustrophobically small corner shower, she could sit in the bathtub in the other bathroom and use the hand held shower.   I told her I would schedule which days we would do this, and I would blow dry her hair for her if she was too tired to do her hair afterwards.  I told her any steam would dissipate out in the bathroom not like in an enclosed shower stall.  Hoping this will help with the panic.

I drove Mom to the doctor, I walked into the clinic and back with her, and we strolled around Walgreens and CVS pharmacy before finding the ideal bath chair.  Then we drove home.  It was four o-clock in the afternoon by the time I got home.  No work today. Big Sigh.  Mom did like the candy aisle at Walgreens so now we have a big assortment of her favorite candies.  She is such a little lady she could eat candy all day with her regular meals and the extra calories could only help!

I am finding even my cane BLING is not helping on walking expeditions. I spent my evening on the couch in extreme pain in the pelvic area, lower back, and legs. My feet started cramping and then my legs. I ate some oranges thinking maybe I am low on potassium, but it didn't seem to help the muscle cramps, so I am guessing it's not low potassium. Sigh

I need to build some endurance so I drive to work with less pain. The increased dosage of fentanyl (25 mcg/hr) is helping with the constant pain and some of the break through pain, but it does nothing for the type of pain I had this evening (and am still having).  Maybe Dr. House will figure it out in April??  I can only hope.

Its 2 am and the pain is still bad in The Legs.  The Headache decided to try to wake up this evening also - probably due to increased walking also.  I hope Mom is not too tired or in too much pain.  She took a nap and then got up for a while and went back to bed at her usual time of 9:00.   I hope to get to work tomorrow, I have things that need fixing and people to help!   Just need to get my jump jiving legs to be still and quit hurting and wailing!!!

I am going to try to pace myself per Diana Lee's post at Somebody Heal Me "Pacing: Just Three Things".  She suggests just picking three tasks you know you can complete each day so you don't end up over tired or overwhelmed.  I think I need to draw up a list of tasks by fatigue level so it will be easier to pick!!!

PS sorry for the advertisement from YouTube if it pops up - its the official video of The Brian Setzer Orchestra perfoming Jump Jive an' Wail and I guess they need the extra income from the ads???

Day 6 Duragesic

The Patch

I have a picture of the duragesic patch. It is tiny. I have some tegaderm patches I am putting over it to help hold it on, as the first one wanted to pop off (I think because it is so small). I tried also securing the tegaderm ends with some paper tape that is supposed to be hypoallergenic but I had to take it off as I started breaking out everywhere it touched.

It is amazing that this little bitty drug delivery system is helping me so much. It doesn't appear that it could hold enough medication to make a difference. Another benefit for me is this drug bypasses my defective digestive system entirely. I can't throw it up, or have it pass on through without digesting.

I have slept the night through the last couple of nights. I haven't been able to just lay down and sleep since I don't know when. Hoping I can get caught up on my sleep deprivation reservoir and be able to have some stamina again.

The Headache just seems to be ignoring the duragesic medication. It is still marching on with it's worse every three or four days pattern BUT the medication is not making it more severe than it generally is. WooHoo!

The Belly seems to like the pain relief very much. My shortness of breath has stopped, as has my rapid heartbeat. My blood pressure has dropped, not back to it's normal 110/70 but at least out of the stratosphere where strokes happen. My hives are a little better because I am not constantly aggravating them with pain medication they didn't like. The itchiness is there but is much less than it was with dilaudid. So far, the duragesic patch has been a winner.

I still have significant pain (probably why my blood pressure is still not normal) but I have stopped the kind of hurt I could not fight against. I did not have the willpower or strength left to push myself time and time again into the lavapit of pain that physical activity has become.

I am hoping that this relief will continue, and maybe this year I can actually put out flowers and a garden and maybe go swimming a few times. Last year I had dropped even these few pleasurable activities I had left because of pain issues. I hope I can increase hours at work, and dare I say it, travel again?? I had to give up going to church several years ago, and before that I had to give up the nursing home ministry I participated in. I would love to get some of that passion back in my daily life also.

A grey Missouri winter day, not too cold, and not too warm. A good day for trying to do some house work...I hope I will be able to sweep and mop the floors and dust the furniture. Not too much to ask of my body.

Hope you all have a great Sunday and a fantastic next week!

Road Warrior Mode

My Apologies to Mad Max

Getting into road warrior mode  - this is when you have everything arranged, ready to go, with a minimum of preparation, able to travel at the drop of a hat.  You know true road warriors when you travel - they are the folks who always have their coats and shoes off already at the TSA checkpoints at the airport.  They always know what time zone they are in, what the local weather is like, and where you can get the best barbque.  They speed through rental car kiosks, and navigate strange roads with impunity. My bosses are the true road warriors, I am still just a road warrior in training!

A looooong week last week, going to work today to print out materials for next week.  The new trainer is MARVELOUS!!!  I think I am going to be able to hand over duties to her without a worry, she just needs to learn some of the jargon that goes with hospital business offices and she's ready to roll on her own, at least for the modules she has seen trained!  I don't want her to get burned out traveling, because she has two school aged children and that is a worry when you are on the road - not the kids themselves but all the appointments they need to keep, and practices they need to go to, and activities they are in.  Modern moms tho, seem to have the organization thing down pat with cell phones, internet calendars, and texting.  Guess I'm just too old for that.

The Headache was bad a couple of days last week, but I managed to ice down the head at night to keep it in control with help from the stimulator.  Last year this couldn't have happened - The Headache would have been very bad just from walking to the training site from the car!  The Belly has been behaving admirably, maybe because I'm not feeding it too much.  The Legs are another thing entirely.  If it wasn't for The Cane, The Legs would not be making it.  Some sleepless nights, but I just can't do the amount of medication it takes to fix The Legs without messing with The Headache and The Brain, so I've just been toughing it mostly.  I think I can make it through this install which is a couple of more weeks.  I pray I can make it.

My co-workers have been giving me fits because I have a plain black cane.  They think I need a cane with bling.  I'm not too sure about that - I mostly wear dark colors when in road warrior mode, because they mix and match better and don't show dirt, and feel the black cane blends (as much as a cane can!).  I did find myself looking at some blingy canes including one with kitties all over it, but not sure if I could walk leaning on a cane full of kitty cat pictures.  I would be thinking "meow, meow, meow" everytime I leaned on it!

I did make sure I reserved a bottom floor room at the hotel.  I got stuck once on an install in a top story room when The Legs gave out on me a few years ago.  I couldn't get out of bed, let alone down the stairs.  Spent a day flat on my back and was able to walk (barely) the next day.  Not doing that again at a hotel without an elevator if I can help it! 

The backup hotel we were going to use is in a town that got hit by a tornado not long after we drove through it on our way home Friday, and their sewage treatment center is not working having been hit by the tornado also, so not sure if we are going to be able to use it.  Sigh.  Tornado season in the midwest, it certainly can be an adventure!

The clients are wonderful, easy to train, with lots of good questions.  I am hoping that this will be a great install, easy on them and easy on us.  Looking forward to go-live day in a week!  Now if I can just get The Legs to do what they are supposed to - driving myself next week and the week after because I have different hours than the rest of the team, so not sure how The Legs, The Headache, and The Belly are going to behave.  They don't like me to drive very much any more, and I actually used to love to drive long distances.  Sigh again.

Unless I take my work laptop with me, I won't be posting on the road, but I hope to be home Tuesday evening this week, and probably not home at all the following week.  Take care my blogging friends! Hoping for no pain and no fuss for all of us!

Too Tired

Maybe I'll Sleep Soon

Home after travelling this week, next week will be gone almost all week.  Not sure how I will fare, the next three weeks look like travel, stand, stand, walk, stand, travel.  The Headache is trying to act up again tonight, and I can't sleep.  Hoping to short circuit The Headache soon.

I'm very tired, and this was just two days this week of travel/training. I guess the next few weeks I will just play it by ear and see how I do.  The Legs are not working very well this evening, am glad this week I had a cane.  Maybe I need to get a Hoveround and I would be zipping around and doing everything!!!  Truthfully I'm not ready for that step - will keep on trucking as long as I can, without the aid of an electric chair.  However I love that jazzy Hoveround tune!!!

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!

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.