April Realities

April two and the wind blows cold.  The yuk factor of the animal has dominated much of my record of late or seems to have.  This I think causes me to leave out all of the joy I have and all of the blessings heaped upon me because the animal is within.  This is a terrible injustice.  While certainly uncomfortable I continue to be productive and must tell of the good.  On the other hand many folks want every detail of the misery associated with the animal and it would be an injustice I think to not put it in this record. 

I broke out the walkie talkies, cleaned them up, put a 12V charge on them without research (very dumb considering I have a lap top on my lap with the app to find out.  I don’t know what it is, but we are like a couple of 4h graders when it comes to these walkie talkies.  Right now she is folding sheets and I am in the family room and we are reporting back and forth to each other on channel 18.  We bought them  for when I worked in a confined space like the attic, crawl space or up on the roof so they are rarely used and more of a feel good tool anyway.  The wind blows a steady 20 mph now and will rise as the day progresses and we get a rare warm front from the South.  I had a nice visit with John.  Inger came early with devotions, prayer and upper workout.  I am blessed beyond measure. 

I slept April third.  The cumulative impact of pain killers I think, but that is ok.  Both Daughters and Son together in the afternoon for a short period of time made this a good day for me.  I wanted to play a game or something but in reality it is hard to be fun when you pass out sitting up in the middle of a sentence.  Of course I did not need the oxies, a good thing. 

Yuk factor:

Fluid content in my tissue seems to be increasing.  My profile is one of a monster, with huge legs, a package by Samsonite, my abdomen swollen and stretched.  At last weigh in the fluid retention had taken me to 220, a gain of about twenty pounds.  I am beginning to experience restricted range of motion in my legs and seepage is increasing.   I cannot put on socks or shoes and can barely do pants.  The increasing dependency on others for the most basic and personal of functions is a real ball buster for me. 

Tuesday morning the sales rep for a lymphedema pump company showed up to demonstrate her device.  After about 30 minutes we quit and the effect was measurable and very positive.  I love it, another weapon to battle with.  It will not kill the animal but perhaps it will piss it off and give me back some mobility. As the week wore on the weak wore on.  Thursday Rex came to visit for the day.  Fortunately for me we have wireless in the house and office space available, enabling my working family and friends to extend there time here.  In this modern age my Daughters and Brother can roll in for hours or days, laptops on the shoulder and smart phones ready and at hand, virtually connected to their endless work no matter where they are.   Friday with both Sisters and Jack was none the less entertaining and restful, even though it does not sound it.  Friday night came and another treat.  Jocelyn and Jared appeared at dinner time with a baseball theme dinner including but not limited to;

1. Giant bag of fresh baseball unshelled peanuts
2. Sangria (again for the squirmy handshakes)
3. Lots of icy cold beer
4. Nachos
5. Hot dogs
6. Coney dogs (beans, cheese, onions available options)

We even found a baseball game, although the Cubs were apparently blocked out.  So we watched reruns instead and a little baseball.  What fun, and a theme dinner based on TV, genius I think. 

Yuk factor;  I have determined that I cannot say it is better on the ’other side’ .  My faith says it is, but it seems to me it would be difficult to have it better, given the life of blessings bestowed upon me.  I do know I will certainly miss this life on ‘this side’ 

The Last Of March

We went out for dinner last night and brought home a couple of meals in ‘to go’ boxes.  I wonder how I ever got around a full serving of anything. Tuesday started on the rough side.  I worked on some follow up letters and tried running down a few.  At best I managed about a half day of work.  In my defense the incoming was intense.  Joyce my Nurse came in for her first weekly visit.  I am bumping her back to two times a week until we get a complete handle on my symptoms.  We also entertained Killer and Sharon and they us, friends and always fun.  On top of that a chaplain stopped by.  She ended up staying about two hours as she patiently worked our story out.  She found inspiring many things we take for granted.  I understand in many cases the animal drives a couple apart.  It has driven us together.  Vanessa took on the battle just as if she were me.  I told the chaplain about Inger and the daily devotions, that Vanessa and I agreed to smile whenever we looked at each other, about our Families and our Family. She read my book ‘The Gooses of Madison County’ and we never stopped entertaining her and answering her questions.  After she left we laughed at the role reversal as it seemed we counseled her more than she us.  In this home so full of blessings it can become overwhelming. 

Tuesday night I experienced intense ball bag swelling.  It happened suddenly, painfully swelling to twice the size.  OMG, what now?  I set up arranging pillows for the maximum elevation, doubled up on the pain meds and began therapy around 8 P.  By 3 A my condition had subsided significantly.  I did not accomplish much Wednesday.  Somewhat weakened by Tuesday and the pain killers I think.  Now 5 A Thursday and the day looks promising as I write this.  While uncomfortable I manned the office today and stayed at my work station for a good part of it. 

Friday and it is April Fools Day.  I called Bruce and told him it was the last day of the month.  He believed me.  I now find that even the largest of sweat shirts I have are tight.  My profile is so distorted as to make others uncomfortable looking at it.  I found one hoody to wear while we have company tonight.  And with the night we enjoyed the company of  Mike B with Chris and the Hays family and a culinary delight we all got to share, Mike B’s  ribs.  Wow, it might be a full day before I get over it, they were really good. 

Farewell To Palm

I respond and we adapt.  While I do have pain and events and so forth, it is not constant, it is every 1-3 hours.  In between life is normal by our ever changing standard.  Work, play and rest still go on, albeit at a slower pace.    

It is lunch time on Friday.  March 25 is the date.  Last night I retired my Palm Vx personal digital assistant.  Today I will remove the software and pack it up.  My first employer introduced me to keeping a calendar and keeping detailed files on suppliers, clients and qualified prospects.  Customer relationship records as they are called today, we called them data sheets then.  For many years I carried a Franklin Planner.  In fact I was manual well into the PDA era and likely still would be had it not been for winning a prize at the manufacturing show in Chicago, a Palm Vx.  Oh what a momentous day that was.  The box was in my desk chair.  It carried no markings.  Vanessa lurked near by.  I opened the box, about a foot square and dug into the plastic peanuts to find a box inches square and a document.  Oh my God, what have I done.  These dolls were hundreds of dollars at the time.  I did a quick review.  Did I swipe my AMEX card by mistake?  As it turned out I was the winner that day of the top prize. Now about 11 years old it holds two thousand ‘data’ sheets along with many programs and applications make it as relevant now as it was then.  Unfortunately Outlook encountered an error a couple of weeks ago out of the blue and it prevents the Palm from getting all the contact records.  Given my limited time left I decided it was best to retire this tool and use the laptop exclusively from here on. 

We went to the funeral home today, picked up the menu and price list and got questions answered.  It was very business like, kind of like buying a car.  Price sheets and sales agreements, discounts for early pay, the mystique surrounding funeral homes and directors torn away by the economic realties.  Dying is a for profit business.   

This afternoon I worked steady getting to catch up on conversations overdue and follow ups that luckily were there.  A significant dent in the pile.  Chili for dinner and my night was mediocre finally settling in about 3A. 

Saturday I worked on cleaning up the laptop and reducing the size of my regions showing the most swelling.  In other words, mess around with the computer and play with yourself.  I put all that aside in the afternoon with Renee visiting and then J and J and M came over with pizza and beer and we enjoyed a very exciting time as Butler won in a shoot out and goes on to be part of the Final 4. 

Now Sunday and clearly I am not improving in the edema area.  Reflecting in the afternoon how fortunate I am given my condition.  My dear Vanessa is my ever present angel.  Her love and devotion humble me beyond words.  I wish I could spare her my agony when I am in it for I know she pains when I suffer but I cannot.  I am not that strong.  I would never begrudge her from fleeing the premises at any point in time to escape my moaning and groaning.  My Sister brought me a chocolate cake and her husband to visit Gerald and I this afternoon.  It was like the loopy quartet.  Another day of spectacular basket ball filled out the afternoon.  I wore bike shorts all day with the saddle on the inside to soften things up.  Can’t bend at the middle and cannot bend my legs up at this time so I need help with all the basics, including putting my pants on.  I hate the helplessness. 

The animal's Power

Decision time soon looms.  It seems like yesterday that I was well, walking through the zoo in Chicago, playing golf with the Hays family and my Brother, those walks in the park and sleeping in bed with my Wife.  Of course I was not well then, but I was unaware.  I struggle to work every day.  Last week I managed about 3 days total of productivity and a lot of time struggling.  Now with each passing day it becomes apparent and clear, yet each day I start and try to produce something.  Is today the day for that big order or that final call? 

Lunch time has come, it is March 24.  While taking the step from treatment to hospice was emotionally difficult, I am glad we did it.  I split my office moving the laptop to the family room where I shall conduct my business from a bed with 3 way incline and lift and a fabulous air mattress that continuously somehow moves about and assures my comfort for hours in bed.  I prescribed the bed stay as a step to reducing the swelling and  restore my ability to walk and make calls.  In the interim I have the luxury of technology.  I can light up two printers if need be from where I sit.  I got a new phone and once again am hands free and I am excited at the prospects presently available.  Should I be so interested in work in my last days?  There is no right or wrong in my eyes now.  I look to fill my days with things I enjoy within the envelope of love and support that Vanessa has so carefully placed me.  I enjoy using my noggin. 

Since mid week last my mobility has gone away.  Walking more than a hundred feet is

impossible and it is turtle slow.  My trunk is shaped like Quagmire’s head. Both legs are trunks with fluid leaking here and there.  My stones are somewhere in a ball bag the size of a grapefruit that feels like someone is kicking it every few minutes with a redwing.  The bed stay with appropriate elevation and doubling up on the manual lymph draining regimen is prescribed to bring it under control.  Now in day two I note some improvement.  Urinating has improved. I now take 6 laxative tablets a day and a liquid once a day to keep my pipes open.  It is working.  This eliminates straining for number twos which in turn reduces bleeding from the tumor into the bladder.  For over two weeks I have been bleeding and passing clots.  In fact, I had to urinate regularly and hope I passed a very painful clot or two every time.  If I missed a time the next time the clot was twice as big.  Oh the animal so cruel in it’s delivery.  Relax so you can pee, almmmmmmm, almmmmmmm.  Find the head in the edema.  Relax and release, ahhhhhhhhhhh, pass a clot, oh, oh, my God, x??!!####, followed by blood.  Sometimes the bathroom fills with the smell of fresh blood, a sickening smell I noted.  Drinking less fluid makes it worse, drinking more makes it more frequent.  Now in my second day most of the bleeding has stopped, so much so the clots are gone. My interval grows longer as well, now sometimes over two hours.  While still a task, this process also has improved from earlier in the week. 

With each passing day the reality continues to sink in.  The bleeding comes and goes.  I have always lived in my own world independent of the emotions and events going on around me.  Often teased for all the voices in my head that occasionally raise their heads the reality is just that.  I have always had a lot of company even alone.  So it has been easy to compartmentalize my situation, placing the animal in a subservient position to my normal life.  Even hospice at the outset seemed like just another step in the process.  In just a few days the animal demonstrates it’s awesome power. 

Last Stop Hospice At Last

And overnight the animal worked.  I got out of the shower and noted that my normally robust figure was wrong.  On second look it was clear I was bloated with fluid.  In my office I watched as my foot swelled with fluid.  Small red lesions on my right leg were soon leaking water.  Once more to Dr. H, the ologist where I had figured we would go on with the chemo to work on some symptoms but the out of control fluid issue I was sure would changed that plan.  I was right.

‘Mr. Courtney’ came the familiar greeting.  ‘Dr H’ with hand extended came my standard reply.  ‘How are you doing?’  ‘Not so good’  ‘At last’ Vanessa blurted, hearing me admit to the Dr. for the first time that I did not feel good.  He gave me a cursory exam, discussed the lymphedema and then said ‘I’m going to be straight with you.  Chemo will not work and I do not recommend we go on with it, but if you want to we can.’  I got lost in the discussion for a bit.  Vanessa asked him about any benefit to it, like relieving pain and symptoms as he reminded her that the risk of infection and other complication is very high.  ‘If we do I want to know what the end game will be.  Things can happen very fast.’  The doctor’s concern was palpable.  I agreed we should get enrolled in hospice.  ‘What’s my time line?’  ‘Two to six months’, and with that came the end of my treatment at the cancer center.  From here on a cure is not considered or attempted.  I did not realize my ologist was breaking up with me until a couple of days later when Stephanie called from the hospice service to set up an appointment.  As she explained the service I understood why Dr. H said his appointment was optional but he wanted to make sure I was getting the best care.  He was saying he still cared as much as he could.  They did the best I think possible, bought me a great summer, counseled me wisely and responsibly and treated me with the upmost care.  In all it appears the cost was around 80 grand and Dr. E’s initial diagnosis was correct. 

So what a surprise when the hospice nurses showed up and assured me Dr. H remains my physician prescribing and otherwise.  Even though he still wears his class ring I find him reassuring.  Hospice requires a statement by the attending bones that life expectancy is less than 6 months.  My goal will be to prove this terribly wrong while taking advantage of all hospice has to offer for my creature comfort and pain control.  Holding the record for longest in hospice would be ok with me. I enrolled on March 18.  At one time I never thought I would but I signed the DNR order and living will to assure extraordinary means would not be employed to keep me a vegetable at some future time.

They came in separate cars on a gray day in March.  They carried papers and pouches, wore the RN nameplate.  They sat together awkwardly on the love seat, being somewhat more in total that the design of the seat.  It appeared any butt to butt contact would have a dire consequence, perhaps spontaneous ignition, I am not sure, only that the sofa drew them to middle ground and they fidgeted to avoid it.  They were playing the rolls similar to ones I have played many times.  A two person team, one was the project manager, the other a service tech or product specialist with closing in mind.   As one shared what hospice was, and what was and was not included, the other watched, chimed in occasionally and expanded on a statement or two.  Both were busy writing on their own paper piles answers I had and statements I had uttered and who knows what else.  I watched and listened and did not hear anything new. These ladies work with death every day.  It did not say sales call, it did not feel sales call but it was a sales call, and  in the end, with the assurance I could continue to work,  I signed on the dotted line officially transferring my care to this group of nurses.     

The Ubiquitous Bladder - An Observation

It’s Not Mine, It’s Urine.  I have to laugh.  I remember when I was first diagnosed.  I had never heard of bladder cancer.  An unknown animal I never knew existed would try to kill me.  The word bladder kind of has a shudder factor to it for me, like the word alone gets eeeeeeehhhhbwhuuuuuuu out of me.  Before the animal I had an iron bladder, developed out of necessity as I would drive 80 or 90 thousand miles a year.  When travelling with rookies and stopping every hour or hour and a half, even in side ditches I certainly felt superior.  ‘You don’t have to?’  ‘No, I have an iron bladder.’  How many times I could say that over the years.  A couple of beers and my name in the snow, no mike either, Michael thank you.  Sometimes I could even eek out the C on a restart.  Memory retention is one thing, but for driving nothing like some old fashion urine retention to get you there and home faster.  We went to Colorado in 1976 and Vanessa was about 6 months pregnant.  We stopped every 45 minutes there and back, regular as clockwork and regardless of where we were.  It is a fond memory often recalled.  Such is my life now for a year.  My interval runs 1 to 2 hours.  No spelling my name now, lucky to squeeze out the M.  Where I used to stand, make horse noises and boil the water in the bowl I now pathetically sit and make a noise somewhat similar to wind chimes on a timid day.  So bladders are part of our life, an unspoken but vital part.  I imagined all kinds of horrors when I was first diagnosed and indeed some have come true.  Certainly mine has become the home of the animal whose presence continues to grow and prosper at my expense. 

When I found out and decided to share my fate with coworkers and friends I knew it would not be enough to just say I had c.  So I published this journal for those who want all the details.  The B word could just not be left out of the equation.  Yuck, or yuk, or eeyuk, however you want to spell it.  To my delight the word I thought would be so unacceptable is quite the opposite.  It took the affliction for me to notice all the products made for the bladder and sold on television.  Why there is an entire industry and no doubt thousands employed toiling away to produce that which sooths, heals, seals, controls and cleans up after.  All for the little old bladder.  Let’s face it the liver doesn’t have it near that good.  Still, despite it’s celebrity status products for the bladder are often advertised as ‘shipped in a brown paper wrapping’.  This puts these products on the same plane as porn, or my college degree, both of which are mailed in brown paper (of course I have no direct knowledge of the former).  So the bladder is still socially unacceptable at the end of the day. 

Another Comeback In Process

And zing, another week has passed.  And zing, another nail section whizzes by hits a wall,lamp,shelf,chair,person,unameit.  If Vanessa knew she would probably at least wound me.  Whatever the cause the tensile strength of my fingernails is equivalent to some metal alloys.  Trimming requires of me closing doors , proper orientation, use of safety glasses and hat and pull over top (no pockets).  The clippers are sharp and easy for me to hold.  Zingclickticktick and another part of my DNA hits somewhere to the left.  The week was difficult going in but Vanessa worked with me to get my medication ahead of the pain.  Friday she commented after the long day how busy I was all day.  It was true.  Zing, tap against the door, good thing I closed it. 

This week started with the pain on top and ended with my practice of taking my pain medicine on schedule and not waiting for the signs of pain to arrive.  The result has been rest, productivity, much less moaning and groaning and regained ability to motor around.  It requires a morphine dose every day.  I am now in my forth day of this regimen and enjoying the comfort. 

Once again I am starting over on the PT stuff.  There for a short period I started to make progress but all of that ended.  Now I am building up again.  Walking is a critical part of my LMP (lymphmanagementprogram), I love TLA’s ( threeletteracronyms).  Making the leg movements to motor about is like running the pumps.  To get and stay on top it is part of the daily regimen no matter what time it is done during the day.  As I have been able to at various hours I have bundled up to walk up the road.  Always mindful that what ever distance I cover going up I must cover going back I have extended my distance from 200 to 1000 feet.  Today I am confident I can do at least 1500.  I collapse back in my broken down chair.  I am talking feet I can walk with manageable pain.  Feet to my threshold seems so miniscule yet 1000 feet to me is as great a goal I think as running 5 miles in the time goal is to my Daughters, with a lot fewer calories involved in the transaction. 

Jocelyn shared this with me;

What Cancer Cannot Do
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

The Author is correct in his or her hypothesis.  All of the things listed are beyond the ability of the animal.  Only a person can do these things.  In my estimation you are chicken if you use the C card to accomplish anything on this list.  Thinking about it this is the list of soap opera plot lines.  Every one has one or more characters with the animal occasionally.  The victim is fighting one of the above moral dilemmas.  I believe it is a lot better not to carry such baggage along with the burden of the battle and the animal. 

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. 

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. 

Routines, Chemo And Working At It

With chemo scheduled for Monday I am upping my water intake for a couple of days ahead to make sure we can find a vein.  This means more frequent trips to the porcelain so it looks like I will finish a book I am reading in record time. After the treatment we will meet with Dr. H.  My work calendar has filled again with some of it backing up on me.  A few good days will get me back on even keel.

The lymph is on the march and managing it is an ongoing challenge.  Since the surgery I have a significant issue with my left leg, groin and lower abdomen in keeping lymph from collecting.  Inger spends extra time every day now.  With the training we gained through the occupational therapist last year and web sites such as lymphedemapeople.com we have a great deal of information and support for battling this condition.  I have to wear my stocking daily.  Admittedly since the surgery I have not been to the gym (now 12 weeks or so I guess) so I do need much more exercise.   I have fallen down on my gab dosage, and Saturday my feet told me to get back on the program.  Now as Saturday night falls upon us I can reflect on the past couple of weeks and rejoice in the fact that tonight I feel pretty good.  Certainly my appetite has returned.

Chemo day at last.  Last night I got a stomach ache that did not abate until around 4 AM Monday.  Tough night for sure but I was back on my feet again by morning.  Now my third round of chemo and I was able to make it without cane today.  Through the miracle of modern medicine I enjoyed a deli sandwich and coca cola while having poisons directly injected into my blood stream.  Not a hint of sickness although a stomach ache again cropped up in the early evening. 

I was greeted warmly by the two infusion nurses on duty who knew me.  One asked how my exam went and I responded that I turned my head and coughed and Dr. H smiled.  After a moment of shock as they looked at me it hit them, we all laughed and it set the tone for the next 3 hours.  I know them well enough now to enjoy throwing them an answer they do not expect when I get the chance.  In addition they got new pumps.  Although I only had to visit the comfort station a couple of times I do have to drag along the chemicals and pump on the rolling coat hanger.  All of the old pumps alarmed whenever they were moved.  For a self conscious old man in a small clinic the twangy beep of the alarm is an orifice closer, usually coming at some critical time in the transaction. The new pump did not fail or alarm and by the third trip I had gained confidence and lost the sitting in dread feeling just waiting for it to go off and the door(s) to slam shut.

We met with Dr. H.  After next weeks final dose we will wait a couple of weeks and then I get to have yet another CT scan to see where we are.  At this rate I am confident I will be able to kill flowers, illuminate a small room and charge cell phones simply by putting them in my pocket in no time.

I layered up, debating whether to wear the boots or not and decided not, I would not go that far.  Ah the advantage of dogs, for so many years the demanders of this twice a day at least every day.  Without them walks lose purpose and are hard for me to get into the groove of doing.  Busy schedules prevent me coordinating with Vanessa, and I can never find Inger.  Rarely in the winter do the walkers come out and even in the best of weather they are sparsely scattered in my neighborhood.

With two t shirts, pullover fleece, hoody, lined all weather coat with padded hood, underwear, long underwear, heavy warm up pants, dress socks and tennis shoes I ventured into the winter with Mom’s walking stick.  Clouds obscured the moon and other than lights emanating from a couple of houses only the reflection of all the light from town kept the street from total darkness.  I want to see how it goes with the tummy and if some of this can be walked out.  Short steps and a slow pace took me up the hill and around some 400 additional feet.  That’s how it is when I start walking again after a long respite from it, progress is measured in feet not miles. The air was sharp with no wind.  As I turned to walk back turning west I felt the gentle flush of fresh air in my face.  I had to stop for a moment to take it in.  When your mind is wandering and you are out of place and time something like a change in the air can be a dynamic experience to say the least.  With the air some of the pain went away, progress.  After tending to Tucker I went in for the night, the better for a walk of 30 minutes including prep.  When I hurt I find it sometimes most difficult to suck it up and work at getting over it.  This makes me a real wuss because the pain is so minor comparatively a pain pill knocks it out in a few minutes for hours so I certainly have nothing to complain about and it should not prevent me from trying anything to control and diminish it.  In short the walk helped a lot and I enjoyed a comfortable evening including about 4 hours of real sleep in pj’s and everything.  Life is good.

And Up And Down And Up Again

Today is January 19 and oh what a difference a couple of days make.  I drove today to Muncie solo.  I have a better understanding than ever of my digestive difficulties.  Without this pain I require minimal medication for pain, taking only one or two of the oxy fives a day.  My spirits are lifted.  I feel really good and I just wish I felt good.  It is weird that in my mind I am fine and happy and ignoring all reality just like always yet when I move about the animal reminds me of it’s presence.  The lymphedema is persistent and requires daily attention, another constant reminder.  I am tiring easily but seem to be getting stronger with each day that I do not have the stomach cramping issues.  Yes I am even eating a fiber bar in the night when I feel the beginnings of an ache and now can do it without feeling uneasy.   In the past two days I have slept horizontal in bed for up to two hours.  Oh what a joy it is to be able to lay down, although I cannot lay on my back I can assume a prenatal, and drift off to sleep in the warmth of a bed. 

January 20 and the abdominal aches kept me up in the night and persist this morning.  Even with the apparent effectiveness of the laxative regimen I am suffering so I have much more to learn about what the animal is about now.  I am resolved to aggressively go after it and determined to gain a control over it.  By midday I am in pretty good shape.  Gas issues have passed and base line pain is manageable, but it does make walking difficult and a little slow.  I travelled today and shoveled some snow.  The temp is going down to single digits tonight.  Vanessa fixed an excellent dinner of chicken breast vegetables and a tater smashed to smithereens.  I had a gab and pain pill for desert.  I am once again in pretty good condition after my bout last night.  My meeting today gave me some serious homework to be done by Tuesday latest and delivered to the client.  

Spiralling Down

Days have passed since I visited here.  Yesterday started a new week and was a good day all around.  I have pain now that is constant across my lower midriff and gastronomic pain that comes with eating and digestion, the latter finally coming under control with large daily doses of laxative.  I have continued to lay off the morphine taking instead 2 or 3 5mg oxycodone, which seems to be doing the job to the extent it needs to get done.        

I am very weary, for it has been well over a year now since I have slept more than a couple of hours straight without getting up to hit the lou.  I am definitely not in any shape to drive and rely on Vanessa to cart me about on my business needs and this is the seventeenth of January. 

The Sick House

I remember as a child a ‘sick house’ in the neighborhood. ‘Don’t go into her house’ Mom admonished.  ‘Why not’ came my protest.  Sometimes she had her Grandson over, always marginally entertaining.  His parents were ‘golfers’.  But it wasn’t the Grandson, it was the cookies that always seemed warm and over sized, and usually served on her back step with some milk under the shade of the catalpa tree.   Raisin cookies without the raisins, for I had tasted a raisin cookie once.  If Mom knew I would be locked down for life, or at least until third grade.  So I would go and knock on the back door and ask for Roger, sometimes knowing he wasn’t there.  I was always invited into the kitchen and she always carried on a lively conversation getting me to talk more than I should have.  I could make her laugh and I liked her laugh.  Then out the door because ‘kids don’t eat in the house.’  Seemed ideal to me at the time.  Mom would ask where I had been,  ‘playing with Roger’.  ‘You didn’t go in the house did you?’  ‘No’ came my lie.  ‘Good, I do not want you in that house.’  ‘Why not?’  I would always ask and one day she turned, her face darkened and in her quiet voice she said ‘she has ringworm’.

I cannot imagine being ostracized for a common fungal infection.  Mom’s fear was rooted in her lack of knowledge, yet she preferred retaining her ignorance and fear over having a good relationship with a neighbor.  The poor woman must have had it once but Mom went firmly believing it was a life long calamity of the most contagious kind.  In my neighborhood I am the sick one in the sick house.  I can only imagine what impression some of my neighbors have.  I wonder how many of my Mom’s live about who fear the animal as mysterious and contagious.

I have learned to measure what I tell people, preferring to give them a card directing them to this journal rather than verbalizing my condition.  Without knowing their frame of reference I have no idea if I am generating interest, fear, compassion or boredom when answering questions about the animal and me.  It is best just to tell folks I am getting along just fine.  My closest friends and associates and of course any one who reads my journal know more than they care to I am sure.

I have decided to forgo pain medication as a regimen, deciding to take it on an as required basis only.  Once again this week I was plagued with the terrible pain of constipation.  After two days of laxatives washing down laxatives I resorted to the nuclear option yesterday at 3AM.  By early afternoon I was at last functional, with the knee numbing cramps gone.  I made it through the night without pain meds and skipped them this morning.  I hope the chemo has improved me enough that urinary pain is at least bearable.  The next couple of days should tell the tale for the time being.  Tragically I have found constipation to be a common thread among cancer patients.  Based on my Google experience I see there is plenty known about it but apparently little to do about it.  With all the research there are no available pain meds that will not also impact digestion.  If it were mine to do I would certainly want some effort put into finding a working alternative for pain relief that in and of itself does not create pain.      

Feeling Guilty And A Job Well Done

‘I’m having kind of a hard time celebrating other people’.  I had to admit I too felt a tinge.  ‘Well, we have nothing really to celebrate, so I say let’s celebrate somebody else’s good fortune whenever we can.  Personally I think chocolate cake should come with all good news’ came my response.  We lapsed into silence again.  I could tell her mind was racing.  As she watches my struggle become more difficult she faces so many unknowns.  Layered on top of that is the unjust burden of perceived sin.  Personally I think sin overstates a natural reaction.  There is burden enough for all without flailing oneself with loathing because of a natural human reaction.  I want to tell her forget the preacher just this once and allow yourself a moment’s weakness if you may.  ‘It’s just that it’s so unfair’.  No argument there.  I watched the land go by in an endless series of flashed images.  I digest input and ideas a little differently with the pain meds effects. Finally I let the silence endure.  Some things best left not said or responded to. 

 My second chemo treatment was yesterday and came off without a hitch.  We had to wait a couple of hours for my prescriptions.  Narcotic prescriptions cannot be fax documents or called in to the pharmacy.  I officially became a morphine user, one pill every 12 hours. While we waited I grabbed a magazine and headed for the comfort station.  Having not moved in 2 days or so I thought I would just sit and relax and maybe it would happen for me.  I had repeated cramps for the past 12 hours or so that came and passed without gas or any other accompanying action.  Just about the time I reached page 3 of the Saturday Evening Post an upward growl of the stomach caused me to lurch a bit and suddenly I dropped a full release.  The stench filled my stall immediately.  I reached around to pull the lever for a courtesy flush.  There was no lever.  This was a modern wave for flush, water and towel facility.  Personally I am not a fan of hands free.  I frequently cannot find the magic spot that turns on the water, usually wave madly all over the place and only occasionally get a paper towel dispensed.  With a sharp cramp more was delivered.  The smell of death now filled my end of the room.  I heard a whimper come from the next stall.  The door opened and an involuntary groan indicated the problem had reached the far end of the room.  I was confident there was a flush button and struggled madly to find it behind my back.  I heard a thud in the next stall, he may have passed out.  ‘Whew’ came the faint voice at the urinal.  Unable to get up yet I worked to rotate on my seat to where I could eye the water supply.  My bowel was now empty.  Nothing left to deliver.  Yet the stench came on as if I had just started.  Fearing something growing beneath me I moved faster.  A faint whimper came from the next stall.  At last turned I found the button and hit it.  In a moment that which was had passed from view and nasal detection.  Clean up was a snap and as I washed my hands I heard rustling from my neighbor’s stall, indicating he had survived.  I left with a smile, feeling fortunate I did it at the medical center and not at home. 

Keep That Train A Movin'-How I Am Doing Now

The scourge of constipation which I have not suffered since last June has returned. What a pain in the a.. so to speak.  Twice this week I resorted to magnesium citrate, the nuclear option to clear the pipes.  Awful to take but very effective in what is supposed to do.  I hope to find a substitute that will keep things moving.  The pain meds knock down the pain and stop traffic on my inner colon highway.  I have 3 or 4 brands of laxative in house.  I will start on two Senna a day tomorrow.  I know from experience no movement in 48 hours means I have to use the citrate.  If this does not keep things moving then it will be trial and error with other products until I find the right chemistry.

Without any digestive pain or pressure I have abdominal pain on the left side that is constant but manageable.  The lymphedema presents an ongoing challenge in my left leg and mid section.  We have increased the time devoted to massage and seem to be making some progress, although it is in fits and starts.  Now 5 days since the chemo and I seem to have some improvement in urgency and pain related to it.    

Sunday morning and I pushed my pain pill interval out to 6 hours.  By then the pain was serious.  Is it gas?  Is it something else?  The pain that comes in waves is gas I think.  It appears every time I eat anything I will have some consequence at the present time.  I took two pain pills and within 45 minutes the pain that would cause me to misstep was gone and the constant ache had taken the drivers seat.  Inger reports my leg and groin have improved and swelling is diminished.  As she worked her magic you could see the color restored and feel the lymph moving (at least is seems like I can).  Even though it fills back in as soon as she is finished, it seems to fill a little less each time.  The serious burning pain with draining is gone.  It is now a discomfort, not a better rest before you try to walk pain.  My head hair is still there and appears to be darkening.  Strange effects of the chemo it would appear.  This past week my appetite has dropped off significantly.  By necessity when I eat I must eat very slowly to prevent horrendous belly aching.  This started before chemo and seems to be progressing right along although there is no indication I am losing weight yet. 

Tough Girls Tough Guys

Are there signals now?  My imagination soars.  A shadow movement, a person in on the edge, a voice it’s signal lost.  It is easy to fall for imagination so great the desire to carry on.  I am blessed with a very active and intelligent full time Wife who is a constant mental challenge and makes sure I don’t go over the edge.  To keep the focus on me she hides her own condition by discussing her issues with her Daughters instead of me.  I cannot escape the irony that in 36 years of marriage she rarely vented to her Daughters.  My swept silver hair is testimony in part to the same.  In 2010 she diverted and it is a good thing there are two of them.  Sometimes they remind me of the family of androids on the Star Trek episode that had a triangular stone hanging on their chest.  They were all beautiful women save one, a male named Norman.  When Kirk cut loose with his liberal logic the brunettes communed and when they could not answer they called for Norman to coordinate all of the minds of the entire android problem to answering the problem.  Norman relied on a super computer.  So my beautiful Daughters and Wife meet through the miracles of technology so many times a day and week through this long ordeal.  A whole world without Norman now, I am left out of the loop, coordinating and staying strong thank you very much.  Watching closely and caring so deeply.  Women surely are God’s grace incarnate here on Earth with hearts so deep and strong.  This relationship of Mother and Daughters gives me great peace.  After the pain of loss passes the Widow will begin a new life, as it always happens.  For her it will be a new place likely, for she has always been one to move and never look back, but only closer to her Daughters.  Together they will find the happiness of life and move on. 

Working with Nurse M I have a new pain regimen.  I will switch from the oxy to a time release morphine sulphate, 20 milligram, two per day max.  Joe warns it will initially ‘put me in the chair’.  We’ll start next week after the next infusion. Rex has been of great help in demonstrating how a balance can be achieved and one can work productively while in constant pain.  Hell, if he can do it I surely can has been my motto and continues to be.  He is a hell of a lot more active than me always flying, living in motels and spending days on airport tarmacs and in hangers and equipment buildings regardless of the hellish weather.  He always loved the winter.  Back in the day we got some of our best business in the snow.  We once paired up and took his turbo rear drive Thunderbird on a what ever you do don’t stop trip to Logansport and back in January to close a new equipment and system order.  We were the only bidders to show up and got the order.  That is what is called being a tough guy in the old fashion pre e mail, voice mail, smart phone, data base, six sigma days of business now gone for well over a decade.  When it comes to my Brother I will never be as tough as he but always aspire that to be.   

Throw Parts At It

Chemo+1 it’s 4:30AM.  I have a faint burning and urge but not enough to act on.  Last acted 2 am and took 2 tabs then.  2.5 hours between actions represents a record that has not been seen since before the surgery, wow.  Oh, never mind.  With all the time spent in the comfort station my reading speed has increased dramatically along with retention.  Seeing that magazine subscriptions to keep up were going to denude a rain forest and destroy a river to produce and add to a mountain to get rid of I have crossed the line to books.  Who knows, my Sister has a regular magazine stand next to her lou with books, puzzles, pencils and so forth.  At the Christmas brunch I visited the facility 4 times and noted that the word puzzle no doubt she looked forward to finishing was being magically finished.  I always found at least one word and apparently many other visitors did the same.  Before leaving I visited the laundry room, featuring it’s own lou in the corner designed with a corner shape.  Here were the trailering and vacation magazines making up the Man of the House’s main dream.  This facility was made for long term communal meditation of the most moving kind.  I always admired their design of facilities and how it cleverly took advantage of the footprint of a very old house. When you really find a frequent need for it, you become a natural critic I think.  

Got Nurse M squared away on my medication requirements.  I am really sure we are not entirely on the same page but we will get there.  Nurse M works well through e mail.  My messages always include my name and dob, which is how she identifies me.  She has a lot of patients.  Using e mail chains assures a back up to all communication on both ends, although I do not feel the need to back up routine correspondence and updates. 

I tried to express to John last night how hard it was getting.  My oncologist has me on a monthly visit to monitor my condition and progress of the disease.  The scan showed the animal alive and thriving and ‘shadows’ about the left area.  I cannot help but be haunted by my Mom’s passing, from learning that the final assault had began to becoming incapacitated and non communicative was a few very short months.  Hospice was months long, born at first entirely by my Sister and in the end by all of us who could.  Only thing I can say is it is a good thing I do not have a lot to put in order but how do you decide what to put in order?  Oh of course the obvious, finances and final arrangements, but what else?  I know I could go out now and seek forgiveness of all of those I perceive I have wronged in some way.  This could include anyone who was ever in my employ and some very close friends.  If I go there, like an Earl it could be an entirely different story but with characters that probably would prefer to forget.  I won’t go there, but pray forgiveness, for at heart I may have been misguided but my motives were never entirely self serving.  Huh, maybe I should have gone into politics. 

Electing not to push the envelope, he went to drain 2 hours 50 minutes sld (since last drain). 

Got in a good day’s work and stayed on the 4 hour interval for meds.  I continue to struggle with hydration.  The animal works hard to dry me out from the inside it seems.  I now have thermal mugs always ready at my TV chair, office, comfort station and men’s room.  I struggle to reach 48 oz per day and my goal is the magic 64.  Urinary pain increases and is a signal that I am not taking in enough water. 

I had a visit with Pastor Miles on the phone today.  His voice is a comfort to me and I was afraid he had forgotten about me as it had been some time.  Not so of course, but his plate is full with wife, grand kids and a Church to minister.  A miracle in his own right, given only 18 months to live in 1997 and stubbornly holding on he is testimony to what might happen.  I assured him I would never give up, and am getting ready to order a free range chicken for sacrifice at the full moon during the sign of the cancer in the astrological cycle.  I plan to adapt the massage table Inger uses for the event.  I am resourcing the chants and incantations’.  This is only one of the many treatment options I am open to. I have always marveled at the intelligence and desire to live that seems to express itself in every living creature, cancers included.  The clever disguises, the surprise moves and sophisticated survival techniques you think are reserved for us ‘smart ones’ you see demonstrated in insects, under the microscope and indeed in the animal.  Bent on reproduction at any cost to assure survival of it’s kind.  Bent on survival for life’s sake just for the sake of living.  My battle is against in many ways my equal and in some ways superior on the field of survival of host or parasite. 

There are several ways to repair a machine of any kind.  When you know a lot about the machine your way is methodical and follows a ladder logic if not this then this until the problem is determined and appropriate repairs are made.  At the opposite end of this spectrum is when you know very little about the machine and you are under severe time constraints, so you ‘throw parts at it’.  Almost every car owner has experienced a large repair bill for extensive parts because the technician simply did not know enough to get at the problem except to start replacing parts.  So little is known about cancer that the best we can do is find willing candidates and throw parts at it and keep track of what works and doesn’t at present. 

Happy New Year Now Back To Work

Sunday the Hays family joined us for football and lasagna.  We have concluded that football games are much more fun if someone comes to share the experience or if we go to do the same but difficult since we have no friends per say that are close and would even be remotely interested in sharing intimate space with us.  I think we are a lot of fun, apparently not a widely held sentiment.  Van and I are both very thankful that Jared and Jocelyn would take time out of their life to venture out in shitty weather with the grand dog just to share the snow with us.  Chef Vanessa delivered a delicious and colorful salad, excellent multi noodle lasagna and a brownie desert.  We popped the bubbly and toasted the New Year but otherwise did not drink as the young ones were still recovering from the excesses of their earlier celebrations.  Keeping on schedule with the meds I reduced to one pill for 2 cycles. 

12AM Monday and I am logging my med p2.  We keep the log, a steno pad, on the end of the counter where her bible sets.  We log the day and starting with first medication log what we are taking, for example;

Monday 1/3/10

12 A  p2 (p1 would be one pill)

5:30A p2, gab, chol, sea

This is an important discipline, especially when it comes to the pain meds.  Hard to take pills, hard to log taking pills, hard to remember to take pills after logging them, hard to remember to log them after taking pills.  Let’s face it, another hard thing, thank you animal for this contribution. 

Seven am, two hours since last pain dose, faint lurking pain in lower left front is managed by the medication.  This morning we will try for a chemo round.  It is hoped this might slow the tumor growth and perhaps shrink it a little, giving me some improvement in quality of life.  The abdominal core pain presents itself each day and I have concluded this is a morning thing, probably gas.  It is present and apparent but managed.  I am balancing this with a single laxative pill every other day to make sure my chutes remain clear.  Working today and getting a shot of chemo this morning.  Found out the health insurance is going to cost us a lot more this year going forward.  Extended hospital stays are absolutely out of the question. 

It is back to work day.  I started very early completing a contractor bid and getting it out.  Chemo took up the middle of the day and upon return to the office at around 2P I dug in again.  One thing for sure in my case, working makes me feel better.  It takes a little to get going sometimes, to get ‘over the hump’, but once I get going I become motivated, focused and productive.  The longer I work the better. 

Chemo went well today.  I got a prescription for much stronger pain medicine and declined it, 4 bucks a pill for one thing and 20 mg for another.  I told Van when it get to 20mg of anything that would be much closer to the end and make mine morphine thank you.  I will stick with the oxycodone tabs, 5mg for light duty, 10mg for rest at night and continue to work at those pain generators that I can do something about, like the edema. 

The Pain Makes For Strange Routines

Ah, so it is movement that causes it.  Is it a blockage?  I took a single lax after breakfast and await the results.  Moving about brings on the core ache with a vengeance this morning.  Frequency is the same, once per hour or so.  Blood presence is intermittent and in small amounts.  But the more I move the less I can.  Now this is worth monitoring.  It is a little over 40 and mid day, I’ll go out and push it to the limit just to see what happens.  I timed my meds and have been maintaining a 4 hour interval taking two each time (max dose) since yesterday.  The drug is reasonably effective for 3 hours. 

I tested my sea legs a couple of times last night.  After a few steps I begin to experience some ‘tightness’ for lack of better description in my mid section.  This worsens with each step and basically makes it impossible for me to walk.  Staying on the 4 hour interval I dropped down to one pain pill for the two evening doses and then up to two at the 2AM drain interval.  This puts me on two at 6AM and in good shape for Vanessa and around 9 or so Inger.  The lymphedema requires now daily therapy to keep under control.  I still have significant fluid collecting in my mid section and while it moves out with massage it seems to move right back in. 

Huddled up to our stove, Tucker in her fur coat and me in my layers we looked pretty analog watching a giant gila monster terrorize everything in site.  Still only able to sleep in 50 minute intervals I have made 3-4AM Tucker time regardless of the weather.  I remember in the past quiet times, a twelve year old huddled with his big brother on a worn out sofa.  With cinder block on the east, sliding garage doors on the south, blankets and tarps on the west and the rough hewn plank wall of the coal bin on the north, the room had just enough for the sofa, a coal stove from Grandma’s, an old TV and jury rigged antenna.  It was New Years Eve and Jack Paar was on the TV.  Laughing and shivering with big brother and logging a memory that never drifted that far from conscious thought.  Try as I may I have never been able to control what events I will remember or how I will remember them.  This is taken care of by the remember gland in my brain I guess.  Nor can I decide what I will forget, so I forgot to try.