Routine And Reflections

Working until I can’t, resting short periods, working more through the day,

Restless shuffling, constant tightness, slowing me along the way,

Pain sometimes, sharp and hard, feeling like a burn,

I take extra care, I would not dare, to risk its return. 

Back pain from sitting too much I hope,

Cold outside that cuts through my coat,

Life is hard and can be cruel,

So I took a pain pill and a laxative to on both ends drool.

I know the drill,

If that don’t fix it nothing will.

Now the 17^th, my 3 week anniversary since the surgery.  Another day where I am a little closer but not there yet.  Making calls and talking to nice folks, layed back and feeling no pressure, a blessing for sure for me.  The days are sunny but crisp now and these last few days I have spent most of my time inside.   It becomes more difficult for me to keep my spirits up as the days pass.  I am still sleeping in a chair.  I get a lower back ache that comes on every evening early and gets progressively worse as the evening goes on.  I take a pain pill late in the evening to sleep. 

The laxative is always a surprise.  I think I am working fine, straight through, out as much as in, etc. and I take the senna and a few hours later pow, where did all of this come from?  Just goes to show the importance of this with the pain killers.  I find it most curious that digestive tract pain brought on by pain killers and the resulting constipation is much different from what I would expect.  Long known for my ebm’s (explosive bowel movements) I am quite familiar with the rumblings and abdominal cramps that go along with abusing my GI tract.  This is quite different from the pain I now have that goes away almost immediately after the laxative hits the mark, punches the clock, turns the lever, opens the gate, etc. 

Now the 18^th and I am marginally better in the recovery department.  Over 3 weeks since I have worn compression stockings and my left leg is looking pretty good.  I am up early getting some office work in and gathering stuff for a visit to the office later today.

A wonderful lunch with Jocelyn and Vanessa and a steady work load in the afternoon rounded out my day.  I wiled away the evening reviewing photographs, catching some TV and talking to Renee.  Only 3 hours of sleep or so and up at 4A, Friday is here again.  Odd how the days are so long with my lack of movement outside the office and family room and yet looking back on the week it seems to have flashed by.  Mornings are getting better for me and this one seems to be no exception.  My stomach feels better and I am motoring around a little more gracefully. 

Vanessa shared with me a little of her experience in the waiting room, the room of the big numbers, while I was in surgery.  I am not sure I would have held it together as well as she had our roles been reversed.  I laughed when she told how my entourage settled in, hospital professionals one and all.  The waiting room mode, I never got it until now.  The vigil, how blessed every patient is that has one. 

I suffered when Van told of getting the call to get back, she thought it would be an hour before the next report and slipped off for a break, the surgeon needed to talk to her.  How my stomach sank as she told of how the news was delivered, how she took hope from it.  I thought if how it must have pained my Daughters and got a bigger knot in the gut. 

And my Sisters and Jack were there as well, but being older they have heard such things a few times now.

And witness to it all was the stodgy receptionist.  The guardian of order, that assigned you a number for your area in the waiting room, would witness elation and desolation on an hourly basis every day.  I am not sure I could do even that job in this cancer center.

Adventures And Thoughts As Recovery Wears On

Today recovery continues.  I have some blood passing at least once a day for the last few days, now 4 I think.  Usually but not always at the end of the stream I think it is a sign that the catheter in for a week beat the crap out of my bladder and related piping, not that I cared, I had an epidural through all accept the removal of it, which was done in fits and starts by a student under the supervision of a teaching Nurse.  Wow, just talking about it still makes by butt pucker a little. 

My left side is still markedly weak and I am very tired which I attribute to my body putting all available resources into the healing process. I talked at length with my Brothers in the morning and partied with Jared, Jocelyn and Maggie, the Hays family, in the afternoon and our beloved Colts won.  Vanessa was at a sorority function but called for a game update and had Jocelyn text the final score to her, hokey smokes, what a fan. 

It made me sad when they had to leave, but they have full weeks ahead and I understood.  I got to take a long walk for my present state, about a city block, this afternoon.  I have pulled a small section of my incision, the product of sneezing hard yesterday so I am taking yet another day very slowly and taking a minimal pain medication regimen. 

Now Monday Morning, and I am losing track.  Three weeks since the surgery?  I wake up to much improvement but I am still very delicate and prone to pulling in the same areas so I must continue with sitting, short walking and sitting.  Oh I am so tired of this regimen.  I am thinking that just about now I would be getting the catheter out if I my surgery had been successful and resulted in a new bladder.  The pain pills distort time and perspective and I hope the effects of what I took over the weekend in the interest of mobility wear off before I have to take any more.   

Skype is now second nature as I regularly visit with Rex and Dan.  For me this alone makes the computer worthwhile and would shorten Bill Gates sentence.  Video calls, what technology.  Just imagine, the telephone was invented around the same time as the gasoline engine.  Today the telephone in it’s infinite variations bears no resemblance to it’s original form, yet the gasoline engine is easily recognizable, having it’s last core improvement, hydraulic valve lifters, introduced in 1939.  While manufacturing techniques and materials of construction have changed, it’s still the same old technology.  Imagine if all technology was put on hold to support one industry, in this case oil.  Imagine if every generation we never said what if and every attempt to change was met with overwhelming resistance.  Many would feel very comfortable in such a world, saying we have all we need today and it will sustain us forever.  They will hold to this even as the world crumbles around them.  I wish I could experience such security by turning away from all but selected inputs. 

Video calls, what’s next, a wrist watch TV?  Holy Dick Tracy. 

4:30 AM and I am grateful for the morning.  I did not sleep fitfully.  I am continuing to pass blood sporadically in very light form or small clots.  Not sure what that means but will continue to monitor.  I still feel it is related to the catheter worn for a week while in the hospital.  Snickers demanded cuddle time so I set the computer aside and allowed her up.  I will be starting work early today as I have a lot to get out and several follow up calls to make.  Great to be busy.  Again today I can feel improvement in my incision but I am still not there yet.  Man I am ready to get back into walking normally, wearing real pants and going back to the gym.  Next week is my goal but I am fearful I might not make it.  Vanessa says probably two more weeks at least.  Perhaps they will come up with nanobots today to inject in me and go after my cancers like scrubbing bubbles, leaving me cured and able to once again drink 2 beers and write my name in the snow from the motel balcony.  Miracles happen every day. 

The c Word

November 13, 2010 and not even a year since my diagnosis.  What if the chemo continues to work?  Ah how we love the hypothetical.  What if there is a miracle, miracles do happen every day.  It’s well before dawn and I cannot sleep, not for the recovery, just restlessness.  This is more the norm for me and has been for years.  I rarely use an alarm clock and don’t need it when I do because I am a very early riser and early faller if you will.  Drives Vanessa crazy.  

I am feeling good and continue to heal.  The wound still seeps but less as time passes.  It is covered with a tape that will wear off.  It still slows me up and I cannot wear pants yet so I am in my sweats and feeling pretty good.  What a blessing it is to feel good.  I’m at the stage of sitting too much but not quite healed enough to get active. 

Controlling the lymphedema has been more challenging but Inger and basic exercises and walking as possible seem to be holding it at a level that is workable.  The neuropathy continues to lurk in my feet so I am trying to be careful to stay on the meds for it.  By the afternoon I found I had to take a pain pill to stay comfortable.  A couple of sneezes in the morning pulled something and I am so sick of this not healing up, although it looks like it will in time.  Clearly I will be on limited travel going into the next week. 

We went to the Methodists for a pancake breakfast this morning.  They do it annually as part of the Christmas in Pendleton event.  Standing in line the fellow in front, his red baseball cap, jacket and jeans, I would guess late sixties in age turned and noted me leaning on my stick.  In recovery my left leg has a deep muscle ache and is weak and the suture area is very sore, so I rely on the stick.  Frankly I don’t believe it is any one’s business why I would use a cane and often when asked my response is considered sharp.  For me it’s like swatting nosey flies.  He looked at me and asked ‘is your knee?’, ‘No’ I broke in, ‘I have cancer, the chemo caused me some problems with the left leg.’  With that crushing verbal swat at the nosey fly,  ‘Oh’ came the sheepish reply as he turned his back to us and no doubt contemplated asking a woman how far along she is in her pregnancy first chance he gets. We did not talk further and I lost him in the room after we were served.  I suppose if it was a knee we could have talked style, mechanics, issues, etc.  The c word has a dampening affect on conversation.

I do get a lot of compliments on the cane, cut from a vine by Dad so many years ago and still light and sturdy.  After all, if you have to be a hobbler might as well be a memorable one.

Two Weeks After Surgery

SnickersWatchcat and Danderbomb

Now the darkness settles in.  Deep shadows, cat on the TV tray, alert and eyes dilated.  Black holes now, ears perked, off the tray onto the table, the reassuring picture of Vanessa at rest with her cat standing guard.  What does she see?  I see nothing there, yet her eyes follow and track, left to right and back again.  The cat, only one paw from the wild I think returns to the tray, her self appointed station a couple of times a day.  Sometimes animals save us from ourselves.  I shall rest easy knowing the walking dander bomb is on guard and protecting me from the unseen.

Now Thursday in the dark of the early morning, watching pundits interview pundits on PBS discussing the economy I find myself disappointed with the length of time it has taken me to come back.  Perhaps it’s the flair of carpel tunnel in my left hand sending excruciating pain up the arm and persisting long after.  I just registered where my brace is in general terms.  Not enough energy to get up and get it.  Not enough energy has been my hallmark this week, now down to a pain pill every 12 hours or so I hope to be done with them. 

Today is see the Ologists and get the staples out day.  More importantly it is Vanessa’s Birthday.  I hate the cancer for keeping me from my appointed rounds on her birthday.  I cannot imagine a gift worthy of her love and sacrifice for me during this past year of hardship.  I shall try to make her day a jolly one, despite the hospital meetings this morning.  We will have Jocelyn with us for these consultations, our secret weapon. I cannot tell where my Women are on my condition.  I find in my readings in such publications as the Journal of Urology that various studies have been done on post chemo therapy different from the what I have recieved.  Dr. K felt I might be a candidate for radiation which will put me in the care of the team Radiation Oncologist. After all if I can add a couple of years without it killing me it seems to him I should.  Now from Oncologist to Urologist to Radiation Oncologist my graduation to being a possible candidate for radiation takes me to a new ologist and a new fat file to be created.  Dr. Hahn was not so enthused about radiation so today we meet with them and get the skinny.  No sense second guessing what’s next I think I will just let the day unfold as it will, remembering all day first and foremost it is Van’s day. As I sit here and the PBS news hour takes time to show me the pictures of the most recent killed in our ill fated military forays.  Ten children, ten sons, ten friends gone and all the lineage that may have come from them.  Ironic I should see this at this time, but I am glad I did.  One more Vicodin this morning, I hope it’s the last one I have to take.    

It Hurts To Laugh

Look at the fun in…feeling terminal, la da da da da da da da, feelin’ terminal to parody Simon and Garfunkle.  I noted in Van’s notes she made note of my breakdown after my visit with Dr. H.  She had asked me what he said about chemo and I broke down in tears for a moment.  Every time I do that the absurdity of it all seems to overwhelm the tears.  If ever their was a font of humor at a funeral it is I (I have done some of my best work at them as Family will testify), so the disease and the visits with the doctors and the acronyms and the terms and the questions by the Women are intrinsically part of the process that Dr. E talked about in the beginning. 

I wondered if the ologists were reading the same Google stuff that I had been reading.  I remember saying boy I hope I don’t get to that point when I was doing my initial research, and here I am.  I never had pain from the cancer, just from the treatments and unintended consequences.  I asked the surgeon where the pain would come from when it did..  ‘Left leg’ he replied, ‘of course we will give you what ever you need.’  ‘Of course’ I replied.  Sometimes the weight of it hits bottom and comes back up.  Of course I do not want to leave, although I am not afraid for my family, for their strength and bond would see them through my passing and they will all continue to thrive.  I just don’t want to miss out on the show as it goes. Since all of my Women reached adulthood I am surrounded by very beautiful and gracious Ladies.  It is every Father and Husband’s dream.  Who wouldn’t want to hang around as long as possible to be part of it. 

Feeling sorry for me is a luxury I cannot afford and feeling terminal equates to that so I put those feelings aside.  I am staying on the job, keeping my calendar full and taking advantage of my good health and increasing mobility.  Now 10 days since my surgery and I am healing pretty much on schedule I think.  Most of the time I am like an old dog, laying around here and there all day long every day, eating and doing that other thing.  I am still taking the generic vicodin so I do not have to worry about overwhelming ambition to do anything. I am content to just sit in my drug induced haze and heal.    

Freedom of flagellation is a totally unique experience for me.  Mostly gas passing is frowned upon in my life.  Beyond sitting around with the boys there is no appropriate venue for cutting loose.  A delightful unintended consequence to that recovery from surgery was the amazing level of support and encouragement given me to let em’ rip, so to speak.  Farting was a coveted sign of recovery in the hospital, and encouraged by Family and Staff I did my best to work one up and once started proudly ripped whenever I could.  So now these days later we still celebrate the gas although I sense Vanessa’s enthusiasm is waning in this regard.  It is impossible to minimize the miracle of medicine and that we are so advanced that I can have my colon cut in two and reattached and be near normal only a few days later.  I know it won’t last.  Already there are hints that I will have to return to civilization, where farts and belches are socially unacceptable sooner rather than later.  No matter, I shall toot proudly and hopefully often for the time I have to do so. 

Sunday and the clocks are turned back in that peculiar Hoosier ritual whereby we reset our clocks.  Long after Vanessa retired I found her standing at the foot of the bed with that self satisfied look of accomplishment.  ‘There’ she declared, ‘I think I have reset every clock in the house except this hall one (it’s atomic and will)'.  I checked my solar powered atomic wrist watch and it had reset as well.  No small feat resetting the clocks since we are surrounded by them.  As I write I see one lower right, a phone with one next to me, a small decorative thing on Vanessa’s side table, and very large and intimidating round one on the wall behind me, time. 

I am not sure why Hoosiers feel compelled to force themselves by law to give or take an hour.  The entire concept of any typical Hoosier to have such power is a downright scary.

Vanessa makes a fun ritual of the rite twice a year, and I must say I look forward to it as well.  This is not the first time she worked through a part of her process with this ritual in the middle of the night.  I went out for a paper this morning, still pretty sore.  Gerald stopped by yesterday.  When I met him at the door I just felt relief, he and Joe are family now, if you define it as the ability to sync up upon meeting each other and mutual love and respect as you do.  Seeing him for the first time since surgery helped me sense the magnitude of the accomplishment.  Under the knife and back again, as they say, or maybe just I said that, not sure.  I enjoy his stories and projects and we often brainstorm in the classic sense through some homeowner hell issue and the like.  Sometimes he patiently allows me to ramble as I do and more often than not we laugh until the tears flow in our meetings. 

It hurts to laugh, literally, but I just can’t help it. 

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.

May 25, 2010 Ridin' With The Lortab

As I write this the dawn rises on May 25. So far I am feeling pretty good. After the long day yesterday we dined at Skyline and upon returning home I passed out for about 6 hours, awaking only for the mandatory draining of the bladder 3 or 4 times. At present I am riding the high of a Lortab, at mid point of its 4 hour window. Typing is getting a little shaky so it is time to take a break.
Today is Tuesday and another hour in the automatic Inger at physical therapy. It's just not the same thing to have the strange contraption panting and wheezing and it compresses and relaxes up and down my lower half. I could get used to it but not on the treatment table I must sit on. My leg has improved enough that I can walk farther with much less discomfort although I am far from being able to make more than a few hundred feet at a time. My feet are still too gnarly and bloated for normal shoes. The modified sandals with bungee cords and metal spring clips get comments from everyone, as well as the stick I carry that my Dad made of a vine at his river cottage so many years ago. I hope to feel well enough for the gym in the morning.

The Last of February 2010

Saturday 2-27-10
Thought it was Sunday until about 2 pm when Van put me right. Reached out to a former coworker and survivor by e mail and made a connection. Reading of his accomplishments and his comforting words for me brought a tear. Set around all day, with a visit from John to cheer me, and a talk with Rex. Suffering a little, but likely it is a result of medicines for pain and comfort, and not the cancer. Cold most of the day, probably due to lack of motion. More research on chemo, and the more I research the more futile it all seems. I fight to not succumb to those feelings, must stay upbeat and must keep working.
Sunday February 28, 2010
I sense the healing process from the surgery is finally kicking in. While still interrupted three times in the night, with the help of one Lortab I gained some real rest. Adjusting to this routine. Jenny returns home today to the big city, where the pace of life and work are weighing on her psyche with ever more stress. I wish I could comfort her in some way but I can only be sympathetic to her situation. The sense of responsibility that our Parents instilled in us was passed on to our Daughters. Today is the first day of the rest of my life. Visited with the boys tonight, Joe and Gerald. Had Van up there last week. My Dad hung out with Merle and some others at the Texaco after hours at least once a week. As we chatted around the table with Linda on the floor (she would not have it any other way) it so reminded me of those glimpses of memory from a bygone day. Old men acting like old ladies I thought to myself, as they doted over me and bled from me the details of my medical update. We laughed and covered their issues as well, from Joe’s ongoing battle with the vicious dog owners to Gerald’s spaghetti recipe.
Have a rash, on a finger, irritating; just what the hell I need may have picked my nose with that finger. Vanessa keeps me in balance. Renee showed up this morning, seen and heard more of her in 2 weeks than in the previous few months I think. Another unintended consequence of the big C is reuniting with loved ones whom you naturally drifted away from over the years. Many species and even some past and present governments cast out their sick and dying or hasten death in some fashion. At the end of the day family is what really counts. I know another cliché. Speedbump, the neighbor dog, has been keeping Tucker’s litter pan clean and helping herself to any food in Tucker’s bowl I suspect. Appreciate the pan service, but not sure it is worth the food, or if the food is even good for little the little booger.