The Final Post

This final posting to the journal and blog is being made by Mike’s wife and daughters. Mike lost his battle with cancer at 4:45 AM on Tuesday April 19. He has told his story “like it is” so I will tell of his final days “like they were” from the journal that I started keeping on March 14 when Dr. Hahn told us that chemo would most likely do more harm than good.
His condition began to worsen on April 12. His weight loss is not visible to me, but is to others. He is using the oxygen more often than not. I began giving him the prescription for anxiety on April 14 and after a few doses it seems to be helping, allowing him to sleep for longer periods of time. He is becoming more disoriented, is having trouble holding things, and cannot type to make journal entries.
On April 15, Mike had a nice visit with his niece, Julie. She is a nurse, so when Joyce came they talked nurse to nurse. I brought Mike a frozen coke (one of his favorite things) and a fish sandwich from Wendy’s. He ate half the sandwich, a few fries and most of the coke. Joyce told us the FlexiTouch is being ordered today. He slept most of the day. His agitation increased in the night into early morning, as seemed to be typical as nights were rough for him throughout this battle.
On Saturday he seemed more coherent, but thinks he can walk without any help. He still dozes most of the time. His sister Renee was here. While I was out running errands she said he was awake most of the time. Before I left I asked him if he wanted to buy me an Easter lily, and he said he did. When I came back, I said “Mike, look at the Easter lily you bought me.” He replied “Oh, Wow!” When we sat down at the table for dinner, (we rarely ate at the table) he paused for prayer (another thing he rarely did) and I asked if he wanted to say it. He said the most beautiful prayer I have heard, in a strong, clear steady voice – part of it was “Lord, I know you are leading me and I am following.” Later he told me he would miss me and how much he loves me. And we cried. It was a very rough night. Mike was in a lot of pain when he tried to urinate. I suspected he had a clot that wouldn’t pass, but he didn’t want me to call Hospice. He calmed down around 3:00 AM.

By 7:00 he was less disoriented, but still in a lot of pain so he agreed that it was time to call Hospice. The nurse on call arrived at 10:45. She was unable to insert a catheter because of the swelling, so she called the ER and had an ambulance come for him. I rode with him and called Jocelyn to let her know. After several tries and excruciating pain for Mike (more than I could bear; I had to leave the room and broke down sobbing as soon as Jocelyn arrived) they completed the task and irrigated the bladder. We called Jenn to let her know what was going on. He was then released to go home. I asked about irrigating again, but was told the hospice nurse would show me how. Not knowing any better, I said ok, and the ambulance took him home. Once home and in bed for a little while, he wanted to walk. He noticed blood dripping as he walked so we got him back in bed and I saw that he was bleeding from around the catheter. I immediately called Hospice again and the nurse came back out. She tried to irrigate again, but could not, so she removed the catheter. She left to go to the hospital to get a larger one. She brought back the same size (largest they had), but was unable to insert it. This led to another call to the ambulance and back to the ER. The nurse went this time as well to do a continuous irrigation. In the ER, more torture for Mike as they made several attempts to put in the catheter. Finally, the got one with a firm tip and it went right in. The irrigation was begun and clots began to move-painful for Mike but better than before. The ER doctor suggested Mike be admitted to be monitored. We were OK with that. By this time it was midnight. Around 2:00 we were doing the admittance questionnaire and Mike was answering all of the questions about family medical history with clarity.
On Monday morning when Jocelyn and I got to the hospital Mike was waiting for breakfast. He ate a little of the omelet and drank the coffee, plus a little more. The irrigation was still at full flow and he was passing small clots. We had a pretty good day-Mike was more comfortable than he had been in a while and talked to his visitors, cut up with the nurses, etc. In the afternoon, I noticed that he was wheezing a little when he was up sitting in the chair. I asked the nurse to check it, but before he could they came to take him for an x-ray since he hadn’t had a BM since Saturday. He had some trouble walking to the transport bed, but when I put my arms around him to help, he danced me a little. When he came back from the x-ray we asked the nurse what it showed. He replied that the doctor would have to be the one to tell us, but that the doctor hadn’t made any changes to his care or medicine which was a good sign. I asked about the wheezing; it had subsided and the nurse said he had checked his lungs and they sounded good. We had a nice dinner with Mike-he ate several bites of chicken pot pie, chocolate brownie and ice cream and drank lemonade. As evening went into night, Mike started getting more agitated and wanted to get out of bed. As I tried to calm him, I kissed him and he reached up with both hands to hold my face and kissed me again. I did the relaxation therapy we used to do in bed –“relax your toes, relax your feet, all the way to relax your face.” This seemed to calm him. Jocelyn and I left to go home at 9:30. We knew we would need a good night’s rest before bringing him home the next day. When called to the hospital early Tuesday morning, the nurse told us that during the night his breathing worsened.

He did go home on Tuesday, just not to our home in Pendleton. When I saw him that last time, my heart broke-I felt the physical pain of it. I have lost the love of my life, my soul mate. I will miss him for the remainder of my life, but I know that he is with me, and I will see him again on the other side.


This is Jennifer, the oldest daughter, and here is my contribution to the final posting:
I will never forget the day I found out that dad had cancer. I couldn’t believe it and didn’t understand how something like this could happen to my family. Throughout this entire process I have had a hard time accepting/processing this. I have always been a very emotional person (which is both a blessing and a curse). For the first time in my life I have had days where I haven’t been able to feel anything. I walk around like a zombie and feel like I am dead on the inside. Other days I break down and can’t seem to regain control of my emotions.
On the outside I tried so hard to be positive. For the past 14 months when friends, colleagues, and others would ask me how he was doing I would try to spin something positive into my version of the story. So many people told me how impressed they were with how strong I was, how I was holding up, etc. If only they had known how I was really feeling. On the inside I was falling apart. A pure and terrifying fear planted itself inside of my heart the day I learned of the diagnosis. I knew I couldn’t let that fear gain control because if it did there would be a darkness to follow that would grab hold of me and would never let go.

As the months progressed so did the emotional roller coaster. There were moments of optimism (chemotherapy to ward off the cancer in the lymph nodes, a surgery to remove the bladder, etc.) but each was quickly followed by “bad news” (lymphedema, neuropathy, failed attempt at a surgery, etc.) and crushing despair. Every single night I prayed to God to give my dad a break. “Just give the guy a break, he’s a good person” I would plead. Several people have told me that there is a reason my prayers weren’t answered others have told me that “everything happens for a reason” and still others have stated that God had a plan for my dad. I understand those words should soothe me and give me some level of comfort but they don’t. Quite frankly I had a plan for my dad too and that plan didn’t include losing him when there are so many more years of life ahead of my mom, sister and I that we need him to be a part of. Maybe one of these days I will come to terms with all of this and then I will believe there was a deeper meaning and reason behind it. We’ll just have to wait and see about that…
I started seeing a therapist a few months after the initial diagnosis. I say that publicly here because I am by no means ashamed or embarrassed. I have learned enough about myself to know what I can cope with by myself and what I cannot. This situation was something that I would not have been able to process in a healthy way by myself. I sought refuge in meditation and running. I learned how to run and cry at the same time which is not an easy thing to do, let me tell you.
There is no doubt in my mind that my dad knew how much I loved him. He and I became much closer during his sickness. I think in part that was due to him opening up and being better able to connect with me emotionally. The other part was my realization (in the fear of losing him) of how much I deeply loved him. The day following his birthday party he showed me how swollen his belly/trunk was due to the lymphedema. He broke down. We sat on the couch and I held him for close to an hour and we just cried together. I told him not to be sorry (because he felt so bad for putting us through all of this) and I told him how much I loved him and that I always would. It took me close to a week to emotionally recover from that incident but in a way I am so very grateful that we had that moment together. In a previous blog he mentioned that he felt my trips home were a burden to me. I never felt that, not once. In reality I hated that I wasn’t able to be there all the time. It broke my heart to leave him and drive back up to Chicago after my visits. To compensate, I tried to make it home as often as I possibly could. I feel that I did the best I could with that.
I could continue to write for hours but I’ll wrap it up here. I lost a crucial person in my life and words cannot express how important my dad was to me. This is a loss that I will feel for the rest of my life. I will miss him every single day and I know that the pain and sadness will never really go away. There will always be a piece of my heart missing but I know in time it will become bearable. I will learn to take comfort in the fact that he is looking down at us all and that he is watching over us.
To dad … I couldn’t have asked for a better father and I am eternally grateful for all of the love you provided, the lessons you taught me, and the life you gave me. Now that you are gone, I will try to make sure you are still able to influence the world by incorporating your eternal optimism, your love of life, and the compassion and empathy you showed to every single person you encountered into my daily life. I will try my best to let those positive elements of your character shine through me in the life I live from this day forward. I will always love you.

This is Jocelyn, the youngest daughter, and here is my contribution to the final posting:
After reading this blog, you probably know all about my Dad’s cancer, but here are some things you may not know:
My dad was hilarious – one of the funniest people I know. He always had random jokes to tell and when he told them, he would always start laughing before everyone else. When he laughed his face would get all scrunched up, and hardly any sound would come out – that laugh made me laugh, even when the jokes weren’t that funny, and sometimes they weren’t.
My dad was selfless – a fact that just occurred to me the other day. In 30 years of knowing him, living with him, being raised by him, I don’t think my dad ever once put himself first. Everything he did, he did for me, my sister, my mother, his mother, his siblings, his friends. I wonder now if there was anything he really wanted for himself that he had to sacrifice for us. I wish I would have asked him.
My dad was an eternal optimist, as my sister already mentioned. Even when the animal had invaded nearly every part of his body and every part of our lives, he was still happy. He still wanted to talk to people, have visitors, smile, laugh. When he was tired and hurting, he was still happy. He told me that we are just happy people, and he was right.
My dad was smart – not just average smart, really smart. Every problem I needed to solve, every challenge I faced, I could take to him. And most of the time, he would find an answer. I was secure in knowing that he would help me no matter what, I was secure in knowing that his wisdom was my safety net. I don’t know who I will go to now. I guess I will spend a lot more time on Google, and I will think of my dad when I do.
My dad was loving. He was one of the best friends I will ever have. He was my greatest confidant. He offered me a sympathetic ear, a shoulder to cry on, and advice about my career, about my marriage, about my home, about my everything. He was the kind of friend that everyone should have – funny when you need to laugh, quiet when you need to vent, patient when you need a teacher, and strong when you need to cry.
My dad is irreplaceable. Unfortunately, as you likely know all to well, my dad’s cancer was ordinary, an illness that afflicts many patients and alters many lives. But, my dad was extraordinary. He was so much bigger and brighter than his illness could ever have been. He changed lives with his kindness, his love for family and friends, the way that he embraced life. You may think from reading this blog that he was dying for these many months. He wasn’t. He was living. From the time he was diagnosed until his final moments, he was living his life, loving his family, and filling this world with a joyful spirit. No one will ever be wonderful in the unique way that he was wonderful.

I love you, Dad. I have loved you my whole life, I love you still, and I always will.

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. 

Getting The Meds Right

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

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

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

The Therapy, The Pain

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

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

Present Conditions

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

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

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

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

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

Valentines Day Report

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

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

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

My Wife, My Diet

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

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

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

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

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

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

Night Time And Life Today

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

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

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

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

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

Digging Out For Homeowner Hell

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

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

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

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

February Is Here

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

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

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

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

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

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

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

Feeling Lymphy And The New Generation Killer

The tightness of the skin indicates a lot of lymph not moving as it should, and the left side remains about half again larger than the right so my lymph nodes have not settled down.  The animal is a rotten evil thing that wants nothing but destruction.  Considering everything we have certainly done well learning to live with the disability that is lymphedema. Yes I have a massage table and a lovely Swedish masseuse named Inger that looks much like my Wife, yes my daily routine is much different from even this time last year, but it can be lived with. 

As if over sized magazines on semi automatic weapons were not enough, what about phones?  Yesterday a beautiful young woman lost her life when she drove her car across the center line and hit a dump truck head on.  It appears she was ‘texting’ when it happened.  I wonder how many more died or were crippled yesterday for the same reason, and if she looked up at the last moment or was so engrossed she never knew what hit her.  I wonder if the dump truck sounded it’s horn.  It used to be you died from being drunk, going too fast or getting run over on the highways.  Now using your phone can kill you.  Of course cell phones from the start were known killers.  I got my first one in 1984 with Cellular One.  It was permanently mounted in a vehicle.  I still have my first truly portable, a satchel phone.  Don’t ask me why.  Then I got my first hand held.  At that time I had clients in the far reaches of Michigan, Iowa, Illinois and Wisconsin and Indiana.  I rigged a shoulder holder for my phone, a rather bulky affair, and during long conversations on the road I could drive with my knee, talk on the phone through my left ear and heat my coffee through the right side, such was the intensity of the microwave transmissions near towers.  Those were the days.  I knew it probably was not good for me, but I never thought a phone could take a person’s life.  When robins tease a cat they play a life and death game.  I wonder if they do not realize it, just as the young woman did not realize her phone could kill her.  I think the robins know the risk but do it anyway, like rambunctious teenagers and the famous last words ‘hey guys, watch this’ that have been followed by many a crippling or fatal event. 

After a week of tossing the house once again today we took a car load to Goodwill.  I definitely have a different perspective on what I value to keep, so some of my toys went.  Some things, like my bear from the big blue house I just could not bear to part with, so to speak, so Vanessa allowed me to keep a few meaningful items.  It just amazes me that every time we go through this we still find stuff to give away, even though the last time it seemed like we had found everything.  This time stuff such as the binoculars I never use, the digital thermometer I used to use, a TV converter box we do not need since we upgraded the TV’s, some old video stuff since replaced by better technology all went. 

I am moving about OK, with some pain and stiffness through my mid section.  Now sleeping in 2 plus hour increments my nighttime routine still requires some food, usually a piece of toast with butter and jelly, around 2 AM.  I am also taking an oxy around that time.  For the last few days I have been able to return to bed around 4AM and sleep through to 7 or 8, delicious for sure. 

My left leg demonstrates chronic lymphedema, but it looks good in hose.  Inger reports we are in better shape today but insists I stay in the compression garment on that side.  Worse is the groin and midsection, where I am battling an accumulation of lymph that I fear might be somewhat dangerous if I do not get it under control soon.  My how life has changed, that lymph is so important to me now and this time last year I had no idea what it was.  Today Sunday is a good day.  We went to Indy, where Van shopped with the Daughter and I got to hang out with the Son.  Life is good.    

Feeling Good Enough To Ponder

Today almost exactly 3 months after surgery I returned to the gym, January 25, 2011.  The workout was brief, 20 minutes or so but the feeling was one of jubilation.  How good it felt to be back.  The workout consisted of 8 minutes walking on the treadmill, followed by regular sets on the AB press, back press, chest press and the dicators or whatever they are called, those neat leg things.  The lymphedema continues to be very angry and the best thing I can do is walk and work it out.  I am very fortunate at this stage to be able to do this stuff and I am extremely grateful. 

While my college writing certainly helps me write my journal, much of my job experiences are now irrelevant and in many ways represent lost arts and a lost way of life.  Oh I can remember valve clearances for IR and Worthington compressor valves, or standard clearances for cast iron vs aluminum pistons, or crosshead clearances, lubrication, bearing failure analysis, estimating time required to retube a condenser or to r and r a machine and so forth.  By 2000 my first 27 years in the compressor business were concentrated on machinery that is no longer made or in service anywhere.  In relearning my business I became more the peddler than consultant, more fireman than project manager and more dollar oriented.  It has been a struggle yet I hold on in part because it is what I know, in part for the sales of service I can complete that helps others make a good living, in part for commitment to employer and in part because I am lazy and fearful of change.  So I hang on and fight the fight every day.  Yet tonight as I go through some of my old library and reference material I am throwing away a knowledge base that I have that is of no use anymore.  An odd feeling knowing that so much that you knew that was held in such high regard and valued so greatly then is irrelevant and of no use or value to anyone now.  On a grander scale the demise of the piston engine will come, and the human knowledge and skill base that built, operated and serviced that engine will be irrelevant.  So then with each generation huge blocks of knowledge die with the holders and it don’t matter to nobody. 

On the other hand some things are learned and remain relevant beyond ones life.  Some are right and some are wrong but in the string of human existence they are passed on.  For generations my knowledge base was relevant, I just came in on the end of an era.

For thousands of years we have had Ten Commandments, new knowledge once that remained relevant, so much so my Word spell check capitalizes the name.  Skill set knowledge is passed on and remains something that matters.  Bricklayers lay bricks the same way generation after generation.  There will likely always be bricks to lay.  Welders weld the same way generation to generation, but some day welding will be a lost art and technology and those that hold that knowledge at the end will pass on with it never to be passed on.  No wonder we cannot figure out how they built the pyramids.  The sum of human experience is not passed through generations, only a small fraction of it makes the cut.  Hopefully someday those with cancer like myself and those who treat it, manufacture stuff for it and make a living off of it will find themselves the last ones that hold that knowledge base.    

Now 3 days after chemo and I am back on even keel.  I am experiencing the pain of neuropathy in my feet, particularly the balls and toes of my feet, which ache and are sore to the touch.  An occasional pain pill is doing the trick of keeping this problem from slowing me down much.  I had a very productive work day today and feeling ready to launch tomorrow.  Inger is unhappy with my left leg and has me wearing the compression stocking every day.  I am having some difficulty with the open toe rolling up on my foot creating a tourniquet around my manly arch and causing me great discomfort.  I think part of it is the stockings are aging, but despite the lace I will likely ask for closed toe when I replace to eliminate the problem. 

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.