Getting The Meds Right

The bark of the Cascara Sagrada will now be applied to get the bowel to move.  Yes, on recommendation of a close friend Vanessa provides me with this organic approach as I continue to struggle with managing the chemistry of my body and the animal.  I sadly must devote time to this subject again, and will in the future until I find a solution.  To once again lament that we can put a man on the moon but we cannot find a pain killer that kills the pain and does not paralyze the bowel seems pointless.  In retrospect we must have some seriously misplaced priorities.  I will experiment this weekend.  I love this trial and error stuff.  Vanessa has complete faith and even provided me with an information page with 4 color pictures and a dissertation in 16 point on the evils of the TT’s as I shall call them, the turd toxins.  Why according to this spiel a third of all the maladies to be laid upon mankind could be forgotten with clean pipes and an end to TT’s.  A few drops of tea made from this bark on the ‘exposed intestines of a recently sacrificed laboratory rat will cause the intestines to move, you can imagine what it an do for a live person’ goes the story.  OK, I am trying to imagine, but having some difficulty drawing a parallel between recently sacrificed lab rat and me.   Of course I love experimenting on myself.  The whole idea of eating the bark of a tree to clean the bowel appeals to me.  After all I first scoffed at the sea aloe thing but I pay thirty bucks a month to have a shot a day and swear it has significant impact.  In fact of late I am wondering if I am helping the animal with the supplement more than me.  Anyway, clearly if I go for seaweed I am open to anything. 

And why is it that these organic remedies have such exotic names? Why can’t I eat the bark of the Sugar Maple and get the same effect?  Did the Creator by design hide these miracles in rain forests for safe keeping for all mankind?  I have no idea.  I will trust Vanessa and Judi her buddy.  I did morphine last night at about 9p and had a pretty good night. 

Friday was a long work day with a lot of miles Vanessa at the wheel.  We went to and about Indy and then to Muncie at the end of the day.  I took a root capsule and had a rough night.  Saturday I was up all night fighting the incessant back ache.  Sunday morning Van made me down morphine and I had a comfortable day.  The back ache cam back on around 7:30P as it has this past week or so.  I kept it under control with an oxycodone and then morphine at the 12 hour interval.  Sunday night the pain returned, same time same station.  This after great care was taken in my diet Sunday.  It was morphine at around 9P and a kicker oxycodone around 2 AM and rest and sleep.  The animal is once again humbled and put at bay.  It will not dominate my nights with pain and discomfort.  It will take the morphine, a disappointment for me as I hate the drug but it is doing the job at present.  

The Therapy, The Pain

The therapy consists of massaging certain lymph nodes or glands as some call them to wake them up then make trenches through the skin to push with full hand contact up gently but steadily to get the lymph moving.  It is known as buckets and trenches.  Sometimes it moves clean into my forehead.  It starts with the chest and sides then to the left leg, then the back, then right leg.  If I am exceptionally swollen she will pull up a chair and work extra.  The mottling of the skin and dark red color belie the lymph unable to make it’s way up in normal fashion.  It is a daily regimen and can take up to an hour.  It seems to be a personal challenge for Inger to conquer it and leave me with both legs close to the same diameter overall.  As the lymph moves it may collect on pockets which become targets for some serious work to get it all moving.  Sometimes it takes both of us to make it all happen to her satisfaction. 

The pain is different, high in the back, last night on the right side.  Last night was the third rough night unable to get horizontal with the back.  I took three pain pills over the course of the night and it finally abated around 4 am.  It comes on each evening around 8 PM.  I will continue to study and pray it quits.  I fear it is related to eating.  One thing for sure it is causing me to eat less, about one half the normal over the past few days.  Since I am tubby I can certainly handle the reduced intake.  Dinner on Tuesday consisting of a sautéed chicken breast, potato salad and beans was delicious.  I ate modestly and immediately cramped up after dinner.  I fought the discomfort through the night.  Better than the night before, I got by with two pain pills in the night and caught 3 hours worth of sleep or so. 

Present Conditions

Sitting on my porch swing at midnight watching the moon race across the sky, an illusion caused by the cloud deck, broken and gray racing through the night.  A brilliant full moon, I made another one and I just love it.  The wind on the ground was gusting to 30 mph so they say, but my home sits in a valley and we get a breeze and the howling of the front moving through.  It is February and about 60 degrees F this morning.  After a week of warming the ice and snow are gone for now.  I am up because of gas pain, which dogged me yesterday. 

Now noon and I am taking a lunch break.  I have been working this morning as I can.  Still having some double me over things going on but the growls and grumblings are welcome signs of things to come.  I feel sorry for Buster McThunderstick.  His once proud prominence now lost in the swelling and accumulated lymph.  I call his name and drag him from hiding every hour but otherwise he is a sad sight indeed.

The scan report came in the e mail.  The animal is metastatic and has spread to the colon and mesentery, the latter surrounding the small intestine and anchoring it to the abdominal wall.  This results in ‘referred pain’ or midline pain across my abdomen.  This is the animal pain, always there, sometimes better sometimes worse.  My kidneys are suffering from minor shrinkage, or atrophy.  This limits my chemo options, limits CT scan evaluation and also means I am suffering gradual loss of the organs.  The good news is this is what it was in December and nothing has apparently changed.

Thursday and Friday I suffered from gas pains almost continuously.  Taking two pain pills at night allowed me some sleep.  I am still working on getting the gas pain thing under control.  For lunch Friday I found a local diner in a nearby town and ordered up their premier burger basket.  I had to put a napkin in the plate to soak up the burger grease.  A generous helping of fries went with it.  By early Saturday morning I was questioning my choice but by dawn I was much improved.  Still this abdominal pain that comes in waves is so severe as to cause nausea and weak knees.  I changed laxatives Saturday with some positive effect.

Tucker is sick.  She slept in the dog house last night by choice.  With the warm weather she was out catting around with her buddies night before last and must have eaten something disagreeable.  I am doing what I can to make her comfortable.  I think we may move her today to her regular bed in the men’s room if she will allow.  I will likely bring the bed out to her.  It is mid February and we will have a 55 degree afternoon.  I sense the rest of the week will be temperate as well.  Inger will insist on therapy today.  I suspect she will show up around noon. 

Valentines Day Report

It is February 13.  I have done little today and lack the spirit to do anything.  I have been alone today as the Girls are shopping.  I fought gas pain last evening and through the night, getting it under control about 11 this morning but leaving me exhausted.  Inger was not happy with the leg and my aching middle makes me frown all the time, as the Girls noted.  Other than that things are good and I can sit here a write a little about it all.  Tomorrow I will have a CT scan and a consult with Dr. H, my oncologist.  To bed at 10:30 for sleep at one hour intervals and up at 6:15 to enjoy Valentines Day with a moon, stars and a spring wind howling in the darkness.  It feels great. With little gas pain and only the pain of the animal and pressure of lymph I am getting along good.  I continue to take two pain pills in the night for sleeping and two laxatives with the morning pills.  This seems to keep me in balance.

They did chest, upper and lower abdominal CT scans on me.  That went well.  I could lay through it without too much discomfort, although the gas pain now present after every dining experience caused some cramping.  Fortunately farting works for me.  After the scans we joined the Daughters for lunch.  Jocelyn brought a Valentine gift for each of us, she is awesome on the holiday stuff, puts me to shame.  We convened at the oncologists office 20 minutes before my appointment.  When my name was called I came through with the entourage in tow.  We jammed into exam room 3 and waited for the doctor.  During the wait we shared tasteless and tasteful health care humor as is our tradition.  I set on the exam table, Jennifer stood in the corner and Van and Jocelyn took the two chairs.  As the girls talked I looked back at the first time we were all jammed into a room because of my disease, last January.  I felt very guilty then for putting my Ladies through the ordeal and I still do.  About the time I started to get depressed about the entire thing the Doc came in with a new fellow.       

‘We took a close look at the scans.  There is no change we can tell from the last.  You do have some fluid in the right lung, but that has been there from the beginning.  We need to watch it, but if it fills up they can drain it.’  My mind digested his report.  ‘I know’ came my response.  He looked at me quizzically.  ‘How can you tell?’  ‘I can tell there is no change and nothing is worse’.  ‘I think we should continue on the same program.’  “I think I would like to quit the chemo for a while’  ‘That’s ok with me’ came the immediate reply.  ‘Is the chemo controlling the cancer?’  ‘Maybe’, then the Doc went into a spiel about percentages of people who’s cancers improve, stay the same and grow with the therapy he is using.  By the time he quit talking Jocelyn's head was in her hands, Jennifer was bowed down and Vanessa was stalwart and fixed in her posture.  So in the end by not continuing chemo I could be hastening my own demise by taking the leash off the animal.  Then again the chemo may not be the leash, and there are many dangers associated with the chemo itself, some of which I already am handicapped with, in particular neuropathy.  So I will take a chance with out it, Doc will see me monthly for a while and we will wait for symptoms.  It pains me to have my Girls hear these parts, about time left and handling symptoms with the reality that we cannot kill the animal because it has grown too much.   Chemo likely remains in my future but for now we will battle without it.

My Wife, My Diet

Oh woman of little faith.  It is midnight and she holds to her chair, half asleep waiting for the softener to complete its cycle.  I assured her my fix was successful but lingering doubts held her to her vigil.  How could she doubt my handyman skills?  I know I was never forgiven for leaving the flashlight under the hood of the Camry but it cannot be my fault that the horrible noise it made occasionally as the light fell against the fan belt was never checked until it went into the mechanic?  This was not an error of skill, but simply a failure similar to a surgeon leaving a sponge in.  These things happen to the best of us.  The softener completed its cycle successfully and off she went to slumber land, confident we were not going to flood the laundry room. 

Up early on Thursday.  The left leg is good in size but angry in color.  Never the less I got high marks from Inger on its condition and an order to wear the compression stocking.  Again today I find myself with lots of energy and manageable pain.  It is delightful.  The sun is out in full force and has warmed the neighborhood to one degree F with no wind to speak of.  I lay on the layers, two T shirts, stocking, long johns, pants, heavy shirt, down vest and I am ready to put my coat on and face the day.  Then of course I have to pee, so I get the first test on peeling down and up. 

Vanessa is by any measure a gourmet cook.  For years she wrote the training manuals and managed editing and production of the advertising and pos stuff for Jenn Air™ appliances.  She wrote the training manuals for sales, distributors, and service.  She managed the photography and coordinated the ad agencies with engineering and marketing.  She has the ability to translate highly technical documents into reading levels of the majority of US high school graduates.  Wonderful gift, I digress. 

Vanessa has a Jenn Air™ kitchen.  Her concept, John G’s design and very little input from me except to facilitate the process.  The kitchen now is past 15 years old and its continued performance is a statement to the quality of the product made in Indianapolis for so many years and the great design.  It is a variation of a galley only larger with more work space.  Cabinet design was dictated by Vanessa for maximum capacity and use of all angular space.  A wonderful local company made and installed them and I cobbled the plumbing together and wired the stove.   Since she wrote the book on all of the appliances you can rest assured the dishwasher is loaded as it was designed to be, along with the refrigerator, and the range and oven is vented per code and design and all of the features are utilized at one time or another.  

Over the past year Vanessa has made it her mission to cook outstanding dinners for us three or four times a week.  She maintains a strict watch on my diet and makes each meal prepared a matter of art and pride.  It is something of a ritual.  While the main course varies the one thing that is a constant is her salad.  A combination of her intolerance of my sometimes unconventional approach to kitchen duties, pride, available space and desire to hold custody of the art generally prevents me from helping, observing or even thinking about hanging around the kitchen when she has her apron on and is in cooking mode. 

Concerned for my diet and weight and devoted to pumping me full of anti oxidants, what ever they are, to battle the animal the salad is served first.  I know the contents come from primarily one place, a drawer in the refrigerator filled with locking bags, things wrapped in paper towel, things in bags that are impossible to open and close.  The drawer is packed tight each grocery day and largely reduced within 6 days.  I have watched surreptitiously as she donned her apron.  Bags and bundles come out on the counter.  A strange whirring tool with a crank is used, I can hear the spinning of the contraption but her back blocks my view.  Spinach, romaine, iceberg magically fill the bowl.  Bright orange carrots, sliced and chopped sprinkled about.  Tomatoes in chunks, onions sometimes, radish thin sliced and mushrooms chopped to top it off.  She calls dinner is ready and the salad is set for serving in the bowl provided or often the bowl is already filled with a work of art, bright colors on a bed of greens, more healthy stuff here than a lot of people get in a year, onto which I lather six servings of ranch dressing and a handful of Mexicali cheese for good measure.  She quietly shakes her head, I thank her for my dinner. 

Night Time And Life Today

Darkness comes too early still on this cold February day, and now I face another night of nights I have come to dread.  Night time is especially hard.  I am exhausted and more often than not take a pain pill to force the sleep issue.  Night time now is a routine.  Settle in around ten if not before, start in the chair, move to the bed or futon, back to the chair, outside, inside, back to bed.  Since chemo this time my sleep interval is often 1.5 to 2 hours instead of 30 minutes to an hour.  After draining I quickly fall asleep for a short period then enter a half awake state until the urge to urinate overcomes the desire to stay put and I tread off, then the cycle repeats.  Around 2 am each night I have more severe abdominal pains and I know now that these are gas pains.  A fiber bar or piece of toast with butter and a splash of jelly gets this under control.  Anywhere from 4 am to 7 am I am usually up again for the day.  This has been the cycle for the last year with only the stay in the hospital with a catheter and epidural for a break.  Ah epidural, what a concept.

It is part of the animal’s strategy to wear me down and weaken me.  I refuse.

Eating is always followed by digestive pain now.  Tough sh.. so to speak.  I am not sure if this is medication reaction or the animal.  Hopefully the scan next week will shed some light on it for me.  Sometimes it graduates to a full blown belly and back ache and sometimes it passes after a time.  Either way understanding what it is has made it possible for me to address it in the proper fashion.  As a result when all else fails a 5mg oxycodone does the job of knocking down the pain. 

I am going to use Wii Fit until I can get back into the gym for the lymphedema along with Inger’s magic.  I could go any time but I am playing the old age card and saying if the temperature is below 20 and the wind above 10 I need an alternative to going to the gym, even if it is only a couple of miles away.  If I am going to make it back onto the golf course this year I need to start now in preparation for it given the shape I have fallen into.  I splurged for supper and bought a Subway sub and cc cookie.  And there you have it.  At some point the softener will once again cycle and we shall see if my repair holds.  Curiously it was a few weeks after the last repair that the problem reoccurred.  I detest that kind of problem, the come and go, not all the time kind.  Homeowner hell.  The home groans and cracks as the temperature falls tonight.  It is 7º F at 7 P and the mercury is falling as the time is advancing. 

Wednesday and I am in pretty good shape.  Did some work in Indy and got along OK.  Another artic gray day though.  I joined a chat room, lymphedema for men, so I will likely get to talk with some swell guys.  Ms G at work told me about a item she saw on TV explaining how in breast cancer they are leaving the lymph nodes they use to take out to prevent the swelling I told her all about.  She connected me with the article.  I was impressed.  Awareness is part of my program for sure and I felt like I had achieved a small victory. 

Digging Out For Homeowner Hell

Thursday, now 4 days and at last the vehicles are free from the ice and a path has been partially cut to the door with a ten pound sledge hammer.  I am none the worse for wear for the effort, although it probably took twice as long as it would in a healthier day.  The workouts the past 3 days in the ice seem to help with the lymphedema and certainly help my overall attitude.  Friday and I am back on the road, at last able to make it to the main road.  One disadvantage is there is only one way out in this weather.  There is a ford going the other way that is closed when it is inclement.

I find driving uncomfortable and it is fortunate my territory to cover is not more than a 2 hour drive any direction.  Much of the time this week I have suffered mild nausea, although things move along ok and my diet has not changed.  The abdominal pain is the same every day and at times during the day seems worse than others, so I move when it feels better and don’t when it feels worse.  With the weather and the animal I have found it a little tough at times to keep my spirits up but Vanessa has nothing of it.  Today she got out of the house for the first time in a week.  We went to breakfast and did some errands in town.  A blinding snow storm set in and we felt our way home in the Pontiac, what a snow horse.  We spent some time outside after getting home, which was neat.  The tool of choice for the ice is a pick axe which I just happen to have, don’t ask me why, along with a big scoop shovel which I also have.  Together we cleared a path on the front from walkway to doorway.  As a reward we cuddled on the couch and watched a movie we had seen before.  This storm ranks as one of the worst I have seen in my lifetime, and certainly tops the weirdometer big time.  Snow but no tracks, the glistening frozen surface for as far as one could see, the night lights reflecting, even a couple of miles away on the alabaster surface are visions I will never forget.  Tomorrow a hired gun will come in and move the snow off the drive, sparing us the labor. 

Monday morning arrives with a functional albeit uncomfortable me.  I am struggling to keep my spirits up.  It is February 7 and a gloomy day indeed with a dark gray sky over a white landscape.  So I went out and took a pick axe to the ice on the deck and walkway first thing, then set up the workmate and did some handyman wood work for Vanessa and topped it off with a session with Inger to correct my shitty attitude, if you will.  It worked, although given how much pain I have through the middle I may have to give up the pick axe, at least for a while.  Nothing like busting your ass first thing to get it right the rest of the day.  Yesterday at 6 am I was greeted with a water softener overflow.  It took me until 11 am to clean it up, do the research, teardown and clean and reassemble the brine valve, which seemed to be the culprit.  And yes, I had a great day yesterday. 

Inger made no comment on my condition, but my left leg was left beat red from ankle to knee if left vertical for any length of time so today is a full press compression garment day.  I broke some ice, made some calls and fought to keep at it today.  I have a general queasiness about me that I attribute to pills for lack of anything else I care to blame.  Today I grew tired easily through the day and napped through lunch.  

February Is Here

January slipped away without my knowing.  Five AM Monday as I sit here feeling rested and ready for a new month.  I have a difficult Client situation to deal with today.  I find it interesting that many of my Clients seem to believe that nothing in the plant ever wears out unless it is production equipment, yet they understand the cost of a plumber, electrician or auto technician in the private lives.  Today is also chemo day, last of the series.  While I have a tentative date to restart in a couple of weeks I want to discuss my status with Dr. H after the CT scan and then decide if we proceed with this course of action or not.

Chemo went off OK except for the infusion nurse blowing a vein.  This is the second time she has been my nurse and the second time she has hurt me.  As I have learned in the process no two nurses poke the same way.  Some are painless, some are clumsy, slow and/or make it hurt more.  Chemo starts with the taking of blood to test to determine my fitness for the poisons.  Van noted a drop in white and red blood cell counts and a drop in creatinine in my blood report.  I figured that was just part of the chemo consequence.     

Tori, normally my Nurse for the initial inspection and blood draw is moving to Denver.  I told her had I lived in Denver we would not be going through this today, as there are cliffs in Colorado.  She laughed but I was most likely serious.  Her ability to stick and hit the first time with minimal pain, sometimes no pain is extraordinary.  I only wish she could teach her technique to some of the infusion Nurses who need the lesson.  She will be sorely missed I fear, so to speak. 

The roads are solid ice and the weather continues to punish this first of February.  The vehicles are encased in ½” of solid ice.  The snow is covered by a laminate layer of clear and white ice and sleet, supporting my 200 lb frame with ease and barely a creek or crack.  It is perfect for sliding and tomorrow I am likely going in search of something to slide on around here.  Vanessa may lose a Rubbermaid tub lid.  We only had the office open for a few hours today and by afternoon this part of the state was pretty much hunkered down.  The weather people on television continue to threaten us with massive power outages.  Even I have been spooked into charging all batteries for lights, putting 10 gallons of water in the tub for flushes, getting sandwich makings to eat if we cannot cook.  We are all electric and I have a Majestic gas log stove in the fireplace running on propane, which this last fill was a stunning 4.55/gallon plus a few bucks in administrative and tax cost.  The stove gives us nominal back up heat.  The power is now flickering on and off so I will shut down for a while. 

In the dark of night I took a rubber mallet to the car and truck carefully tapping and breaking the shell of 1” thick ice that encased both.  It took about an hour but I did get windows and doors cleared and vehicles started and warmed in the even we need them.  That same ice also coats the roads out here, yard, deck, roofs etc. so I hope I do not have to go anywhere.  All of the working out allowed me to sleep well although I was up very early and unable to go back to bed.  We have not lost power to date through this storm most likely because we prepared for it.  Today the storm is passed.  Once again Angela the weather comedian missed the mark.  No wide spread damage or power outages from ice that never materialized.  We got sleet and snow instead.  Oh I know it could have been ice but it was not, and once again her certainty has totally missed the mark.  This morning I watched as a TV reporter wandered a grocery store.  At last the connection between the TV news and the milk and bread team has been blatantly exposed.   

I went out at 3P and with my trusty bin lid carefully maneuvered to the top of the hill in the front yard and road the lid down on the solid glaze.  The sun today melted the top and it quickly refroze with the afternoon cloud cover, now harder and more difficult than ever.  I managed to do it 3 times and rested for about an hour.  I took a pain pill before I started and now I am in great shape.  Vanessa is on a tear around the house cleaning like mad (cabin fever).  Fortunately she has a lot of tutoring scheduled tonight on line to keep her mind occupied.  I must admit the place looks great and it is difficult to find a dust bunny anywhere.  I put a finer filter in the air handler this time and got the genuine OEM elements.  The house has always been a dust haven and I am experimenting with ventilation as a way to alleviate some of that.  Bad enough we have a feline dander bomb roaming the castle. 

Work is keeping me hopping which is good.  I am talking to a lot of really nice people and it is a ton of fun.  The challenge is of course to make orders happen.  Oh well, I am getting half of it done.  Thursday morning and the Government has appeared with plows and chemicals to dig us all out.