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.