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.

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.

Throw Parts At It

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

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

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

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

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

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

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

Round 2 With The Beginning Of May

The first week of May marks round two of the chemo. While round one helped certainly, Dr. H seemed disappointed that it had not done more to impact the cancer. Round two is the same as round one chemically. The first treatment went as the one previous. I still have my hair, and the toughest part of it is the night of and day after. But on Tuesday this week business was good and Van chauffeured me about to make calls. Met a great fellow in Muncie who’s business was once tier one for the automotive. The business is a shell now, but he plods along, for it is what he knows. We visited for an hour with barely a mention of my obvious handicaps. For the first time Deanna, our angel of physical therapy, broke out machinery. To begin with she treated me with something similar to a brush plating device where I held the ground or cathode, and she held the anode, in the form of a pad. She used cornstarch for lubricant and worked over my left leg. This she called deep tissue therapy. Then I was placed in a variation of a G suit, with chambers that alternately inflate and deflate, producing an exquisite sensation and sense of fluid moving in my leg and middle. After therapy I made several trips to the single restroom on the first floor of the hospital over the course of an hour. Today I have bruised feet and cannot walk. Oops.
Two AM Friday. Now 26 hours of severe foot pain. Had no taste for Oreos tonight and ate a peach fruit cup This is definitely not the old me. The pain in the feet is accompanied by a black and blue toe on the left and one on the right to a lesser degree. The pain is a burning, your toenails wanting to blow off. Definitely not bruised feet as first thought. Marietta says Dr. H has a drug if it is not better today, nuerontin I think.