The Prerequisite Emotional Rollercoaster

It’s Monday evening, surgery is scheduled, the wheels are in motion, the diversion is selected and I have 4 weeks to prepare.  Or is the diversion selected?  I still have some thinking to do on that.  I still have some research to do on that.  I am sure Nurse E gets a lot of this since they do so many every day/week/month.  Again, thanks Bill Gates for Windows which is now working only in safe mode on my power workstation for some unknown reason.  I understand Apples do not have the problems so thanks Steve Jobs for making them so much more expensive so that I cannot afford to go that way and keep up with the ever changing technology that dictates new hardware every 3 years.  I digress again.  It is a mental valve to redirect me away from thinking about my immediate future.  Mental preparation must begin, but I think tonight I will allow myself the luxury of escape by sleep drug induced if necessary. 

‘I think I would rather die than go through it’ I can just hear T say.  Well I just don’t think we get those choices on purpose.  I can’t wait for another round of hospital food.

Tuesday came and went in a fog of depression.  I just allowed myself to wallow in it for a day.  Wednesday is here and I am hard at it playing make up ball for the slow start yesterday.  Was not successful on some rfq’s I put a lot of time in and that is discouraging, but then I can procrastinate until the cows come home and it will not move me forward or make me feel better.  Inger noticed this morning during our session and told me to ‘suck it up buddy’, sounding very much like my Jennifer.  So I did and so I am. 

I seem to be somewhat swollen, or maybe I am just plain fat, most likely the latter.  Still not spiritually up to the gym, maybe tomorrow.  No luck yet on my media machine, which I am trying to save from Trojan hell and oblivion.  The time and effort put forth with my work the past couple of weeks will not make gravy right now but will in the future.  Working with big mechanicals has a learning curve.  I am getting there.  We are trimmed to serve them well. 

OK, must just be fat.  Here it is the last day of September.  I feel great after a good work day and lots of walking.  I keep forgetting to take my stockings off, as it is now approaching midnight.  Through the day they caused me some momentary discomfort but adjustments made kept up with it.  Note to self, get stockings with closed toes in the future.  

I have concluded that my surgical decisions are a bet of sorts.  I must decide if I expect to live 5 years or less or 20 years as Vanessa expects.  I am heavily leaning to the 20 years.

So if given a choice of what I would prefer over a longer haul the neobladder is a slam dunk and the surgery my surgeon prefers and does the most of.  So when you go to a steak house order steak, don’t order fish.  I will sleep on it.   Of course we will not know what can be done until I am layed open.  Such is the way it is with most surgeries I think. 

Broke down, bought Norton, fixed my computer.  I hate computers.  

The Nitty Gritty Of Hard Choices

Tumor Is An Ugly Thing

Monday morning long before sunrise and I find myself in the same frame.  Time to suck it up.  Autumn is now here in force.

OK, let’s think this through.  Clue one is the reality of it, as shown in the photos taken in February.  Clue two as so eloquently delivered on the BCAN site;

‘If bladder cancer is found to have spread to other sites, systemic chemotherapy is recommended. It is very difficult to permanently cure metastatic bladder cancer in most people. In most cases, the goal of treatment is to slow the spread of cancer, achieving shrinkage of tumor (temporary remission), relieving symptoms, and extending life as long as possible. With advances in treatment, most patients with advanced bladder cancer can expect to live longer than they could just a few years ago.’  ‘Longer than they could’  the operant phrase to consider. ‘Bladder cancers are chemosensitive…’, ‘if the tumors do not respond to an initial course of chemotherapy and radiation, it may be reasonable to perform, if medically possible, a cystectomy.’ Again quoting the BCAN site, here they explain in other terms what the surgeon described as ‘same as pouring water on it’.  In my case the chemo had an effect on the tumor making the surgery reasonable.  The Cleveland Clinic offers these insights on surgery;

‘It takes one to two months on average to feel well again and to regain your strength. Also, it is not unusual to feel a little depressed or discouraged after surgery. Discussing your feeling with friends, family, and even other members of a support group (ask your health care team member about support groups in your area) can help you deal with your emotions. As with any life change, an adjustment period is normal. Don't hesitate to call your doctor or other health care team members for assistance or if you have questions. Their goal for you is to get you back to your lifestyle as soon as possible.’

‘What restrictions will I face regarding work, activities, diet, or travel?

People with urinary diversions are usually able to return to the life, work, and hobbies they previously enjoyed.

• Work — Most people can return to their jobs in one or two months on average. If you have concerns about your line of work or other job hazards, be sure to ask your doctor.
• Activities — After the post-operative period, exercising and participation in sports and other activities is encouraged. Check with your doctor or health care team member.
• Diet — There are no eating restrictions, but if you have special dietary concerns, check with your doctor or health care team member.
• Travel — There are no travel restrictions. Just a word to the wise — travel fully prepared with necessary supplies, as you might not be able to purchase all supplies at your destination.’

So there it all is.  Most likely we aren’t talking decades living my alternative life style before this cancer takes me down and my only chance of extending any time I have lies in surgery so surgery it is.  And so we shall begin chapter two of this journey.

Facing The Radical

9/24/10 In the early morning on the BCAN web site (www.inspire.com) reading the comments in a men with neobladders discussion group I came across this one;

‘I have had my neo since 2/09.  I am incontinent and must wear pads and diapers.  …so far can only go 3 hours…use a condom cath to travel hooked up to a leg bag…have had diarrhea since my surgery.’  The he goes on to write ‘With all that I am still happy to have the neobladder, for me the bag would have really brought me down.  I have learned to live with this and try to just move on the best I can’.  Once again I feel puny in the shadow of giants in character.

Now Sunday and two days have gone in a flash.  My ever patient Son and Daughter took me to a golf course for a sound round of beers and 6 holes or so, 3 lost balls, 3 horrible gaffs.  But as it was approaching twilight there was no one ahead, a perfect scenario for a first timer.  ‘Natural golfers’ he said of our hitting, straight and true when mind is not overwhelming matter and ball contact issues do not prevail. Starting with a golfer was most important as I picked up many of the basic etiquette's involved in sharing the field with others.  I like the game and concept but suspect the economics will prevent me from venturing very far past the driving range for the foreseeable future.  Miracle I was out there at all I think as I look back on the what ifs and disjointed events that finally led me to discovery and a treatment path.

‘I would have done it a month ago’ the surgeon said.  I remembered that part of his dissertation, Vanessa’s protest that Dr. H said surgeons liked to wait two months after chemo.  The surgeon gave a mild defense; well there can be complications as he rattled off a few life threatening ones as if they were only incidental matters.  But now Sunday morning, in the clearer light of day I wonder if I should endure another TUR only to delay surgery until a later date and keep the risk, but I know in my heart with this kind of cancer it is proven that waiting is not an option.  I posted on BCAN and voices responded giving me a sense of hope, yet as the week end wears I find myself increasingly depressed.  Major surgery, a week in the hospital, 8 weeks to recover is beyond daunting to me. 

Meeting The Surgeon

Remind me to not allow myself to be ‘worked in’ for my next MD consultative appointment.  Arriving with ease at the Simon Cancer Center at 8:43A for registration and apologizing for being a few minutes late I was called into the exam room a few minutes later.  At 10:45A I stood in the door to Exam 1, gasping for air having clawed the walls waiting.  Ironically at that very moment the Doctor arrived.  ‘What’s wrong?’ he asked.  ‘Been in here too long’ came my reply.  ‘Yeah, we worked you in.’ came his criptic reply.  At that point I was not sure if I should bow down to this arrogant …….or simply throw my arms around him and dry hump his leg in gratitude.  Frankly his demeanor as he came into the room set me back, a certain cockiness.  My mind raced to categorize him, flatten the details but I resisted the temptation to get off on the wrong foot.  As he started I remembered that this guy is also a college professor.  Suddenly much of his earlier impression was shown in a new perspective.  I now found myself in greater appreciation of this guy as he laid it out, probably for the tenth time already this morning.  I am sure if you interrogated each of us individually you would get 4 different versions of what was said in that room, that stuffy little room with the heavy door.  ‘At this point’, he paused, ‘we would take it out’.  I then heard in summary my odds, risk vs benefit with regard to diversion options and fell into mental numbness.  I had heard it all before.  ‘there is no study on how long you live if you do not have the surgery’ he said, ‘but this cancer will eventually kill you if you have it.’  And that is the hard reality.  However remote the chance of a cure may be the only way at present is a radical cystectomy. 

May I digress for a moment and point out that just as it is with ologists (any need to see one is not really a good deal no matter what kind, gynoc, cardio, uro, proct and so on) so it is with ectomy’s (tonsil etc.).  Also any surgical reference that includes the word ‘radical’ simply cannot be a good thing.   

Your bowel routine will be forever altered, you will wet the bed, you will be cathed for 3 weeks as he outlined his ‘favorite'option for diversion, the neobladder.  No matter the diversion choice the lymphedema will get worse because he will take out every node he can.  This is done because detection science is way behind and given the nature of the disease and reoccurrence rate the surgeon prefers to fall on the safe side.  And on it went.  As questions arose in my head Jocelyn asked them as if on cue.  Vanessa dutifully took the notes as a good parliamentarian.  Minutes from any meeting such as this are critical over the long haul.  Even though I knew what to expect the reality of sitting face to face with someone who will change your life in very fundamental ways permanently is still something of a shock.   

Preparing For The Doctor

September 23, 2010

I hate this part.  We have one of those milestone consultations this morning, like the kind you have before making a surgical decision.  To say I am not afraid is a lie.  I know in my heart of hearts that I have two chances to survive this curse one being a miracle and one surgery.  I try to comfort myself in our accomplishment to bring me from ‘oh, I,m so very very sorry’ to ‘hey, let’s talk taking a shot at the cure'.  The Girls are all about getting on with it, the sooner the better.  I am not so quick to jump.  We must ask the right questions this morning so Jocelyn will be along to assure all bases are covered.  Wow, what a resource our Daughters are to us.  Jocelyn said she was proud to be able to buy the buffalo the other day, I nearly teared up just at the thought that my Daughter’s buy us lunch once in a while.  I think we should get some sort of parenting badge for that accomplishment.  Ah, enough of blowing my horn.  But the dump has made me feel better, so to speak. 

I am getting great mileage out of my stories of our experience with buffalo.  I was breaking out into a buffalo mating call I thought until Rex (man of ultimate wisdom) advised he had heard buffalo call.  After explaining the noises made the only thing I had that could do it properly ( I am going to have to practice) is my remote control fart machine vintage 2000 or so I think.  So I have recommissioned it and it sets close at hand need I make any of a variety of buffalo calls as a result of eating the delicious buffalo burger and loaf and chili and I am sure I will return soon to keep the call going stuff.  Buffalo nachos next time with booze. 

I hear her stirring in the next room.  Time now to get ready.  I am sure my morning routine was much like most men’s until 2010.  On shower days such as today a hum haw around until the last minute, get in lather up, rinse down, towel off 60-85% throw on today’s outfit and hit the bricks.  Vanessa and Inger have trained me in a new routine through subliminal, tongue lashing, spontaneous outburst and other means.  We have laughed until we both cried so many times through the process I must say it has just worn me out and down.  So after my normal manly jump, lather, rinse I carefully dry to 95-100%.  As with all things this additional drying adds exponentially more time to the morning routine, i.e. it takes as long to get the last 10-15 as it does to get the first 80-85 you see.  Some kind of rule of life applies here. This followed by the use of moisturizer on my head hair covered legs.  Now this is necessary because a consequence of lymphedema in an extremity or limb is the skin is stretched.  Fighting this continuously is very important in preventing really nasty stuff from happening.  . The battle only requires lotion and Inger in my case along with the compression hose to keep it in place during the day.  After thoroughly working in the moisturizer I sit in my office and apply my compression hose in a fashion I would think many would envy.  Oh the sensual look as I raise my high arch into the air and apply the long rubber band with the cute stuff at the top, and I do mean all the way up on the left thank you.  I stand among the most blessed and thank the Lord every morning first thing by going outside and looking up to where I feel pretty sure he or she is looking down from and saying thank you Lord. 

Now for the matter of surgery I will forever be altered.  A best case would be I would have normal function a few weeks after surgery with a new bladder and less small intestine or colon.  Beyond that I do not care to expound at this hour.  The nervousness returns, anticipation, that feeling through my chest and in my stomach, a weakness in the knees, yeah, I am for sure that today.  For me white coat syndrome is an easy one to fall into.  So the time has come to prepare.

Wanting The Animal Out

Vanessa is anxious to get the tumor out.  She thinks that is the end of it.  I tried to tell her and gave up that mine is a cancer without an end.  With a very high recurrence rate within the first 5 years or so and my present stage seeing a cure is not even on my radar. 
Personally, being stable and my ability to get about and increasing strength makes me somewhat comfortable with my present situation.  That is not to say that the tumor is not a weight I resent carrying and feeding.  I want the animal out of me.  I know it’s will to live is as great as mine as a whole, that it is of me and part of me and I want it out of me.  So I will wait for what the surgeon says.

8:15 am and a message from Marietta, it is time for surgery.  Shortly after we left she  mailed Dr. K the surgeon and from his I phone around 7:45P the word came down, time to get the animal out of me.  So we will consult shortly and get things going.  I have done some research, and the doctor painted a rosier picture than the research in our first meeting.  Now with fresh scans and a stable condition we take the plunge.  Above all I want the animal out of me.   

Stable In So Many Ways

‘You might as well go out and get a job’ he said in resignation.  Really, he didn’t want her to.  The present arrangement is just fine thank you, but she had started this conversation and he wanted to end it and move on to another topic.  Conversations between mates are like battles between armies sometimes.  It is best to pick the spot on the field that gives advantage in battle, and locked in an auto hurtling down the road at 72mph was hardly the place for me.  ‘I thought you didn’t want me to work’ she replied.  ‘I don’t’ came the immediate reply.  ‘Well I think I have to wait to see how things turn out.’  ‘If it’s what you want to do you should do it, I will be fine, we can get help if we need it down the road as far as my care is concerned’, he said with his foot now firmly lodged in his mouth.  Like a worn general at the end of the day, he knew he was lost.  With that a long silent pause ensued, as it often does between us, her buried in her thoughts and me in mine.  From there it is whatever floats to the top, avoiding the controversial and immediate, and so it goes.

It is Tuesday in the early AM, 9/21/10.  Jennifer’s b day was yesterday and I sorely missed her.  Jocelyn and Vanessa spent the morning and early afternoon with me as we waited for 15 minutes of testing and 10 minutes of consultation.  The ordeal started at 8:15AM with check in, two drinks and 11AM for a CT scan, a wonderful lunch at Ted’s Montana Grill where we imbibed in buffalo and drank through environmentally correct paper straws.  Van and I spent the weekend in Indy with the Grand dog and cat.  Saturday we walked a lot through the shops of the village and I held up well.  Yesterday Inger was well satisfied with my leg.

We arrived at Dr. H at 12:45P for check in and had our consultation around 2:05P.  Uncharacteristic for this group but one could see they had some difficult cases going on with by my count 4 new diagnosis deliveries during my time there.  I felt so for the fellow probably younger than me with two caregivers.  He came into the lobby from the exam room with his feet sliding in a drag.  They stopped at the nurse station.  His caregivers left him at a chair in the lobby and went out to check out to set the next appointment.  He got some options, I heard her say.  I took her to be his sister, and him his brother in law.  Left alone across from where I set he had the look of the deer we encountered early this morning in our headlights.  My heart went out to him then my name was called.  When I came back the trio was gone.  Today during our visit the Doctor was laying out some bad news for a few people.  An office filled with pain yet the professionals soldier on working within the process.  

The prognosis is;

Two months since treatment ended and condition is ‘stable’.  Lymph nodes are significantly smaller than in January and tumor has not changed, although he noted some thickening in the wall (indicating growth according to my research).  The results go the surgeons and we will see if they want to consult on a surgical option at this time.  We will know this week.   

Building Up Every Day

Tonight I flew my new kite until rising winds resulted in a broken line, no damage to the foil thankfully.  It wore me out and is probably a little too much standing for me.  My gym routine is 30-45 minutes of mixed up fun with 20 or more minutes on the elliptical each time.  I am definitely building strength.  I am certainly not losing weight.  Both are probably good.  The week has shot by.  Work was filled with a steady stream of tasks with well over 40 in the first 4 days.  Let’s make a deal is the game of the day.  The business gets more and more like retail every day.

New Skills

Did I just pass something or is that a poop stain in the bowl?  Oh, I’m OK, it is a stain.  I hate this.  The entire concept just fries me.  All my life I was a NMP (nonchalant male pisser), or passer to be politically correct.  I know, suck it up as Jenny would say, you have the disease; it is just part of it.  Great advise for sure so I will just accept it as part of my new life, adding VUA (visual urine analysis) to my resume’.  Peachy.

The Supplement

I started up with my seaweed supplement again.  Years ago I went through a period of time taking the concoction, one ounce daily.  It was Seasilver then.  My friend G got me going on it.  At the time is was sold like Amway used to be and the manufacturer claimed outrageously that it was a cure for everything under the sun.  I tapered of the thirty dollar a month regimen but kept track of the company which eventually was closed.  The product came back out as Sea Aloe.  I don’t tell people about it because I don’t sell it.  If I got started on all the positive things it does for me, from the energy boost to the rapid healing of wounds I fear I would end up sounding like a snake oil salesman.  And since many people say I must be imagining things and I might I leave it alone.  I have a shot every morning with my other two pills.  Started 3 weeks ago and once satisfied it was the same as before I set up to get 3 bottles every quarter.

Normalcy Abounds Living With Cancer

I have great difficulty scheduling anything with my Wife.  Nothing new here.  Over the years we have had few vacations as either my calendar or hers simply did not allow it even when we could afford it.  Neither of us have been very good about joint calendars since the kids grew up and moved away.  I have my own office and an area in the garage for my life and Vanessa has the house and a cat for hers.  Tucker, the outside cat with alpha issues visits at it’s pleasure, usually when in need of heat or a treat.  37 years of marriage this December and we are very successful room mates with 2000 sq feet of house to ramble in and maintain and a couple of felines under foot.  I love the normalcy of it all.  We have had a great summer full of activities and fun stuff, and I have pictures to prove it.  The very fact she is busy and on with her life yet managed a very special variation for me every day puts me in wonder of her.  Must of been something I said, or perhaps on a primordial level it's a smell thing.  Whatever she seems to love me as I do her.  We do banter a lot and always end the call with a love you.   
Inger shows up daily with a bible, her coffee or tea and Vanessa’s cat usually.  We get to spend some quality time together.  Now 8 months since my diagnosis.  The memory of last winter is a vision in a darkened room.  The lymphedema is hot today, a strange nerve sensation I guess.  The leg is a darkened red but MLD restores it’s normal color quickly.  Life around me is thankfully normal.  I have moments of depression with the season change but this is something I have fought off without the need for medication since 1970.  Vanessa will attest to how difficult some of the Christmas seasons have been, but she has always taken it upon herself to make sure I ‘quit that shit’ and have and be part of a good time.  The cancer is still with me of course and this is my last week of summer before the next phase of the process begins whatever that may be.  I am keeping my calendar as open as possible for that next step.

Hey Who Cares How It Works As Long As It Does

Don't dwell on it I tell myself.  Who cares at this point as long as it works.  I pine for last year at this time when I had none of this.  I am back up to 3 gabapentin a day for my neuropathy.  This generic for Neurontin®  It is for my feet. After some research I discovered the pain in my feet is similar to that inflicted upon sufferers of shingles.  I also learned that the makers and sellers of the drug that is handling it have no idea how it works exactly, except maybe it affects some calcium channels in the brain or some such thing.  I do know it promptly eliminated the pain and my toes returned to normal color, and lowering the dosage brought back the pain and my toes turned black.  Go figure. 'There is a pill for everything' the noble Dr. H. said.  I am enduring some side affects including weakness, some physiological routine variations (PRV's), fatigue and a voracious appetite.  On the latter it is the most difficult to live with.  I have fought back the urge to graze at night but have to watch myself everyday for specific cravings mostly of the fatty variety.  Oddly satisfying a craving for a Happy Burger or a cookie from the pantry or whatever is always disappointing.  I have adapted to long term illness with some bitterness but none the less acceptance.  Medication induced additional difficulties and negative unintended consequences really toast my cookie.  My research tells me I may have to take this stuff for years before my condition is such that it is not needed.  This pain has been the worst so far of anything the Good Lord has set forth for me to endure.  I thank him daily for the pill that keeps it at bay. 

Feline Dangers

I am increasingly suspicious and wary of feline telepathic powers.  What in the hell made me rise up and go to the door to let the hairy creature in?  Perhaps I heard her meow but it was so faint as to not register consciously.  But if that is the case is not that a form of manipulation?  Animals manipulating humans in the same way the broadcast media does, subliminally.  How can we protect our sponge like brains from this onslaught?

Snicker's Diary

Snickers

Day 2,737.5 of my captivity.  This afternoon I got the big loud one to do the back rub thing.  I thanked him by not biting him.  He goaded me with milk but I had none of it.  Going to work on the one of my gender here who has the illusion she is the alpha cat.  Have her responding to various commands including lots of non verbal stuff.  Going to try to get her to cluck like a chicken.  Ha ha, who's the alpha now beeeotch.
The black SOB on the back deck figured out that she has toes and I don’t.  Yeoweeeeee!!!  She's been teaching me the finer points of birding, frogging and basically being a local big cat.  I still don't like her and I don't care
We all know about his tumor, smells just like Molly’s did.  We try to be nice to the big SOB but all we get is a few biscuits and some dutch rub crap.  Good behavior has got me some extra time outside.  Blackie took me out to the wild beyonds last night.  I hope to make my escape soon and be in Florida for Halloween.

9/11/2010

Today is 9/11/10.  Rain is on the radar to the west, but not much of it.  It is great to face another day.  I remember the video of the people jumping to escape the flames, I mourn for the loss of thousands that day and hundreds of thousands since. 

How Does She Keep It Together?

I am reminded this afternoon of the plight of other family members, two with cancer and facing extended treatments with chemo and radiation, isolation and stem cell something or other and one with a troubled heart. Their cancers are different from mine. Each cancer is different. Mine occurs in certain types of cells, like the ones that line the bladder. It is well researched and the doctors seem to be able to predict it’s movement and progression. There are three of us now, different locations, backgrounds and experiences but all with a type of cancer. I suppose some families are never touched by this scourge while others have it heaped upon them. With Mom’s rapid decline and passing just last year the ravages of the disease in any form are still fresh in my mind. As I go I have come to appreciate the incredible courage she displayed throughout her final few weeks, from her conversation with Jeff to her last day of consciousness.

Mom loved the convertible

The overwhelming desire to ‘keep it together’ is keeping a cap on the increasing strain between loved ones. As the day of the next exam draws nearer the strain will increase. It surfaces in odd ways. She becomes compulsive about the garbage bags he is stealing from her stash for the men’s room. Yes she has a garbage bag stash. With varying size baskets and dedicated locations for recyclables garbage bags are not a cut and dried issue in the house. Hard to believe I know. For his part, he is desperately trying to find something to be irritated about. Oh she can push him to a momenentary eruption, but it is so exhausting it simply isn’t worth it. Takes days to get over. At this stage the extreme codependency makes time apart not feasible. So they go, rising each day, he at 5 or before and she at half past six or so. Life goes on.
I am trying to grasp what it would be like to be in her shoes. Her life mate has a disease. He has suffered in her arms. She has heard him cry out in the night. She has lovingly dressed his wounds and attended him, fed him, wrapped him, comforted him day and night, night and day. At her hand he regains his health but remains in the shadow of the disease. Their lives forever changed by new routines the disease mandates they go on. She sees him and remembers the doctors words ‘incurable’. She wants to cry out the pain is so hot and deep in her core but she does not in front of him. Just thinking about it and writing this makes the pain of it all excruciating. Thank God for her friends and daughters who show great love for her and stand close in support.  I am forever in wonder of this woman of such great grace and strength.  I am the lucky one.

Joys Of Summer

Saturday morning and we are up late by our standards. A late date last night as our honeymoon summer full of dates and doing stuff continues. Jared and Jocelyn have been great contributors to this cause and we are (I hope) comfortable companions. The arm swelling is consistent with my gym workouts and is not getting worse or better. I still have that lymphedema feeling in the arm and am using MLD and elevating it when the feeling reaches the point where it is uncomfortable. Felt good enough to take out the new kite around mid afternoon. Life is good.

Prayer For My Brother

Getting closer to people exposes you to their vulnerabilities, their pain and suffering as well as their happiness in the same fashion that yours is exposed to them. I never knew my Brother was in the physical condition that he was in or that he suffered to the extent that he did and does. To see him in tears is so heart wrenching. He is my rock and he gives me strength. Please Lord, let nothing happen to him.

Losing It Again

Lost my handicap placard. Oh no. I have learned to take advantage of priority parking thank you very much. My early onset of halfshiemers has given me the forgets. Now what was I saying? Oh yeah, so two days of searching for it turned up nothing. Vanessa tried everything from gentle interrogation through hypnosis to tying me to a chair and placing me under a harsh light, still no recollection of what happened to it surfaced. Then on Sunday Morning I had a flash. Laying in bed it came to me. I laid it on the front of the console. No doubt, that was it, I could see myself doing it.
First laying in bed in and of itself is a wonder that all should appreciate and savor for a moment. There are many who cannot lay down and let their frame settle. They live with it the way you live driving around on worn out tires. You work at it every day and driving is a chore. Then finally you put on new tires and the car drives like it was new. You lived with a condition for so long you forgot what it was like before the condition existed. Human nature. When you sleep sitting up long enough you rarely think of laying down. Anyway they say 13,000 engineering hours went into the redesign of my pick up truck, and they left a gap between the console and the dash, and the shell of the console stands above the hump it straddles. Now they thought as they looked at their monitors that having a tray right there at the front of the console would be really handy. Occupants could toss their change, cards, nick nacks, jewelry, handicap placard or whatever there conveniently. So if you can imagine anything handily placed on the tray at the front of the console might very well slide into the gap and tumble into the dark crevices and cavities under the console. I can certainly picture engineers from Purdue pouring over screens and studying dimensions and angles to make sure the truck cab was a perfect ergonomic fit. Surely it was distressing for at least one of them that after all those engineering hours they missed the trap left for lost valuables. It was one of those you wake up thinking about it things. No sooner was I dressed than I step dragged myself out to the truck. I pulled the plastic of the console away from the carpet a little and out tumbled three ink pens and a couple of business cards. From the driver’s side a sharpie, pen, small post it pad, restaurant menu tumbled out. Closer inspection revealed a glimpse of the placard lodged under the console at the front. A quick plan of attack after careful examination and out it slid into my hand.
Remembering Dad’s trick of tying the garage door key to a 2x4 to prevent me from pocketing it, carrying it off, losing it, leaving it in the garage or failing to return it to the house I put a stylish fob on the placard too big to fall into the void. It now resides clipped to my man bag (it’s not a purse).
It is what it is.

Wonder And Shadows In The Room

September 20, the date hangs over us. Nine Twenty, the day when we find out what our plans will be. Will we prepare for surgery and all that goes with it? If that is the case will it go well, or will I have tubes hanging out of me for months? We don’t know. The other way, new spots or spread, not operable, in which case maybe a new chemo recipe, radiation, who knows. Playing the odds to extend life a little bit longer.
It’s a shadow in the room. We see it sometimes in each others eyes. A couple of times we sort of joked about ‘if I was gone’ or ‘if she went before me’. The pall of my mortality stands in the house. We look through it, we look around it, we try not to look at it but it is there. A towering pillar between us dark and foreboding.
I look into those eyes and I see the same eyes I saw first in the shadows of a room full of people the spring of 1972. Smiling blue eyes, the love in them, the brightness in them and sometimes the sadness in them that I see now more often. The fear that she will be a widow. Something I did not want her to be. Something that is likely my fault if it happens.

Past Life Memories And Present Friends Make My Day

Ah once again I can revel in the hidden blessings of the disease. Accepting lymphedema as a permanent handicap means I can say I have no issues at present. My friend from a previous life Dan called just to check up on me. I hired Dan into the business around 20 years ago or so by now I guess. I think he was still in his late teens. Today he is an honorable and sometimes formidable competitor. That is how it goes. You make your best competition in business the longer you are in business. I have done it several times directly and a bunch more indirectly and am proud of every one, even the ones that separated on less than ideal terms due to circumstances at the time. In other words historically as a boss I made mistakes and was sometimes an asshole.
Dan and I talked for a while about family, business and our adventures. As always we synced up pretty quickly, talking comfortably as we did when we were coworkers even though it has been some time since we spoke socially. Back in the early days of his career we covered a lot of miles as I worked to help him grasp the scope of what we do for a living, the difference between generators and doers, the conflicts between sales and accounting and the honor and fun of serving Customers externally and internally. I learned to be careful what to feed him, but even my most strident efforts in this regard were more often than not a vain attempt at tempering his digestive processes. He could clear a room or cause you to stop the truck and run for cover. What great laughs we had and still find that common bond all these years later.
Saw my friend Jon today. We got to sit and laugh for a few minutes in his shop then Customers and calls pulled him away. First time I saw him since the sickness started. Wish I had more time to spend, it was a great visit. Seeing him working in his shop, watching his easy manor of supervision over the poor b that hired on has as his day help (must be a tough job, not much tenure in the position) I sensed that he was living his dream at least in part. And then thinking if Dan I realized he was living his. How fortunate I am to be in the presence of such fortunate friends.
As for me today, a hovel is happy if it is home.

A Snickers Event

September 2 at 6 AM and I finish my coffee and a few back issues of some journals I enjoy I am met by Snickers at the entry to the dining room, meowing fervently and blocking my path. Snickers is a long hair something that even when perfectly stationary is producing a fine cloud of dander flying everywhere. In alert mode she extends her significant coat out to make herself bigger. Such was her profile as she looked up at me and loudly meowed. Of course at this hour of the morning I know the game. I started it by doing it once, and she has us repeat it occasionally. I think she is polishing the routine so she can train her Mother. I said OK and Snickers led me to the utility room door, I followed her in and she jumped up on the water softener, a 30” tall affair with a flat top where her bowl is placed. I stepped up, she turned to me, I began the dutch rub on her back just up from the tail and told her what a fine animal she is and how lucky I am to have her. She then turned and buried her face in her breakfast. This is the only time in our daily routine when Snickers allows my approach, I can even lay my head on her back during this game, a move that would only mean puncture wounds and hard feelings at any other time.
I continue to experience an increased sensation of edema in my left arm. It is a tingling accompanied by an ache deep in the limb, a tired stiffening kind of ache. We took measurements for baseline yesterday to see of it is edema or just a reaction to increased gym activity. I pray it is the latter.

Nightmares

Horror of horrors, lymphedema appears to be creeping into my left arm. We measured this morning, my left wrist in visibly larger on the left, a full half inch by measurement. The arm has the aching, tingling and always there characteristics of my left leg, on a much smaller scale. This is a very unwanted place for the fluid to accumulate. Lymph is very inert and difficult to move about. I find my left arm more easily fatigued, and I am left handed. I am just getting paranoid to a certain extent I think. Even as I write this it kind of feels like lymphedema in my forehead. Rubbing on it makes it feel lymphy. I must be going nuts. Come on, give me a break.
He was a wealthy man, and he knew it.

Lot's To Be Thankful For

So today, August 30 I find myself thankful I am not a Chilean copper miner trapped 2000 feet down with a 2” hole for a life line and the prospect of being there until Christmas or beyond in an earthquake prone part of the World. Holy cow. The pictures on TV are heart wrenching to say the least. So far I have not heard any tasteless jokes.

Thinking Twice About Clinical Trials

I do not mean to be selfish, but I am not so sure I want to be part of present or future clinical trials. First, my veins are still very angry at me for what I have put them through. Secondly I have learned there are as many ways to draw your blood as there are nurses to do it and the skill level varies. Further a caregiver predisposed in their minds on some other place, time or person can fail to take into account needle size, make poor vein decisions, make mistakes and cause me grief. It would seem our medical schools could do a little better on standardizing procedures and teaching uniformly the correct way to penetrate a Clients person with a sharp object to remove blood, but maybe that is just me. If my experience is a measure I have to say if the nurse comes in angry ask for someone else to do the sticking.
‘So did you see that camouflaged truck for sale?’ duh

Notes From The War On Cancer Front

Tommy Tumor and his cell mates Enda Edema and Lenny Lymph have been in communication with Sir Can in continued efforts to defeat me. Seeing my strength, size and air superiority, well organized chemical attack and so forth, these creative enemies are probing and looking for ways to entrench themselves over ever greater geography by exploiting my weaknesses and carefully trying to break my spirit.
Oh, sorry, I digress. Was I talking about Taliban, Suni’s and Afghan’s or cancer?
In any event, my enemies are creative and the cancer like any other form of life has as strong a will to live as I, but not stronger, and I have science on my side. ‘Science will save us’.
After a level 9 elliptical workout Friday and all the painting yesterday this morning, Sunday the 29th my left leg with the hose is almost the same size as the right. It’s too cool. This afternoon on the south side of Muncie some idiot was driving up and down flying a rebel flag in the back of a 90’s vintage pick up truck. Apparently this dumbass supports a plantation economy, slavery and a division of America. This is at minimum seditious behavior in my humble opinion, but the air waves are full of those proposing anarchy these days.
Something chemical is still going on. I seem to be going bald on top while the hair on my legs is getting attractive and thin. Frankly, it appears I am going bald on top and growing head hair on my legs. Perhaps this is another miracle of modern science. Do the Doctors know head hair can be grown on legs? Can it be harvested and transplanted? Is it renewable? Will it grow until I have to see a hair dresser? So many questions. For the first time in my life I have a condition that causes a serious physical reaction when I over do it. I am not saying that before I did not have physical reactions. You over do it and you’re sore, you over do it and you’re tired, you over do it and you’re over heated. You over do it and you get frost bit. I suffer a slightly different result from over doing it now, a physical reaction with the lymphedema. My left leg can become hard as a rock and swell up in a heart beat. For a period until a couple of weeks ago I lived a cycle of overdoing it until the leg gets bigger and feels tired and funny. Rest it, use a stick and get it back down. Inger says ‘it looks good’ and slaps the calf. I go about overdoing it until the leg swells back up. ‘Oh this is angry, you’ve over done it. Rest it up, don’t do so much’ Inger says and I get the stick and keep it elevated and so the summer cycle of June and July went.
I have found a couple of routines with certain machines at the gym that really seem to help keep thing under control. I started very tentatively. My routine includes 20 minutes min on the elliptical or ski machine, leg presses, the scrunches where I do my kagles while doing ab exercises on the ab table. Man, who was to know cancer would be so much work, and it is not even the cancer, but the unintended consequences that are causing me so much toil and sweat. As I write of going to the gym I have not forgotten the dark days of late winter and spring, when I though I would never return to the gym. One thing for sure, life is a good as it get’s, but it can be miserable if you don’t get to do some getting’.

Every Disease Is A Profit Center

One of the marvelous lessons I have learned is the breadth and depth of the health care industry. Just my little tiny speck of involvement reveals much more than hospitals, clinics, nurses and doctors. In my case there are those that make special lights, chairs, infusion devices, bags, pumps, hose, compression devices, electrical devices, the list goes on. All of this employment, research and resource aimed at bladder cancer and lymphedema. Each an industry in and of itself. And so it goes with every other body part and the body as a whole. This does nothing for energy independence, defense, or to cloth, shelter or feed us. It is an industry built around the old and feeble among us.
It is still happy face time. Things are going pretty good today as August fades. It’s early on Saturday as I catch up on this among other things. The air is cool, 50’s and dry. Sunrise appears to be a spectacular one in the making. The next few weeks will go quickly with anticipation of the next scan. I will continue to assign little importance to this event, considering it just another step in the process that is so well practiced and delivered by the cancer center.

Summer Projects As War Is Raged

August 26
Where have the days gone? I am working my tail off for few orders, a common complaint these days. I am enjoying the quoting, researching, problem solving stuff that is getting thrown at me. I even have a shop project going on a data logger. Me, no sparky for sure with burnt screwdriver tips and multimeter probes now a master of the 4-20 amp loop circuit and all the components contained therein. The recorder is awesome and something no competitor offers in a little box, but there is that thing of making it work. Modern technology has made it safer than it was for me the last time I tackled a similar project involving electricity. I think I was 12 and then it was a shortwave radio. Failure then meant blowing a fuse up at the house, the kind you screw in carefully, made of glass with a light bulb like base. Dad shown darkly when I blew fuses and was capable of blowing one of his own. Today my excursions in power are protected by a GFCI. With a flash and a pop I am not electrocuted, the equipment is not damaged and the building does not burn down. Then one has only to step over and push the reset. No one is the wiser. Wonders of modern science, not that any such thing ever happened to me.
My daily routine begins with Inger, our Family scripture time and our MLD session. Then it is on with the rubbers and off with the day. Last night I showed my stockings to a young man with a broken back, likely from sports, who must wear a special device for several weeks. I am not sure it made him feel better. I just wanted him to know wearing stuff is something lots of folks go through. I failed to mention while he can retire his in a few months I will wear mine for the remainder of my life as the prognosis now stands. We shall see. War on lymph is the name of the game. These lazy ass lymphers just do not want to go back up hill once they get down to my left leg. Must be like the Taj Mahal for lymphers is all I can figure. Anyway you gots to keep em’ movin’ no matter, cause if you don’t stuff gets hard, bigger and pretty soon you might be back in engineered sandals and taking pain pills. I still remember as I laid there and looked down on the examination table concerned about my grapefruit size jewels of the Nile I realized my left leg was swelling before my eyes, even as we spoke. ‘Part of it.’, the doctor said. For a few moments I accepted it, but my Women did not accept it.
So war it is. Take no prisoners, wake up them lymph nodes first thing, start the calves pumping. Four to six days a week I am at the gym, usually before 6 AM with a crowd for the most part my senior I think. The oldest I know is in her mid 80’s doing the elliptical at level 80 for 30 minutes keeping pace and barely breaking a sweat. If that is not an inspiration what possibly could be?

Gym Update For The Record

August 22
Been to the gym 4 days straight. I have the good fortune of living one mile from a small 24 hour gym. An early riser, I find the facility populated with a few hearty soles my age or older between 4 and 6 am on the week days. Must be a getting old thing. In the late afternoon the flavor is more muscle beach. As a senior citizen (imagine that) I get a great rate. Today it was 20 minutes on the elliptical, little over a half a mile at level 5. on the weight loss program. Some upper body work. Lifing 100 lbs, 110 lbs pushing with leg and chest press, curling 50 lbs. Work out times 30-40 minutes. No signs of trouble so I will continue. It makes me feel good as long as I have enough water.