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.
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.
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.
Today is January 19 and oh what a difference a couple of days make. I drove today to Muncie solo. I have a better understanding than ever of my digestive difficulties. Without this pain I require minimal medication for pain, taking only one or two of the oxy fives a day. My spirits are lifted. I feel really good and I just wish I felt good. It is weird that in my mind I am fine and happy and ignoring all reality just like always yet when I move about the animal reminds me of it’s presence. The lymphedema is persistent and requires daily attention, another constant reminder. I am tiring easily but seem to be getting stronger with each day that I do not have the stomach cramping issues. Yes I am even eating a fiber bar in the night when I feel the beginnings of an ache and now can do it without feeling uneasy. In the past two days I have slept horizontal in bed for up to two hours. Oh what a joy it is to be able to lay down, although I cannot lay on my back I can assume a prenatal, and drift off to sleep in the warmth of a bed.
January 20 and the abdominal aches kept me up in the night and persist this morning. Even with the apparent effectiveness of the laxative regimen I am suffering so I have much more to learn about what the animal is about now. I am resolved to aggressively go after it and determined to gain a control over it. By midday I am in pretty good shape. Gas issues have passed and base line pain is manageable, but it does make walking difficult and a little slow. I travelled today and shoveled some snow. The temp is going down to single digits tonight. Vanessa fixed an excellent dinner of chicken breast vegetables and a tater smashed to smithereens. I had a gab and pain pill for desert. I am once again in pretty good condition after my bout last night. My meeting today gave me some serious homework to be done by Tuesday latest and delivered to the client.
Days have passed since I visited here. Yesterday started a new week and was a good day all around. I have pain now that is constant across my lower midriff and gastronomic pain that comes with eating and digestion, the latter finally coming under control with large daily doses of laxative. I have continued to lay off the morphine taking instead 2 or 3 5mg oxycodone, which seems to be doing the job to the extent it needs to get done.
I am very weary, for it has been well over a year now since I have slept more than a couple of hours straight without getting up to hit the lou. I am definitely not in any shape to drive and rely on Vanessa to cart me about on my business needs and this is the seventeenth of January.
I remember as a child a ‘sick house’ in the neighborhood. ‘Don’t go into her house’ Mom admonished. ‘Why not’ came my protest. Sometimes she had her Grandson over, always marginally entertaining. His parents were ‘golfers’. But it wasn’t the Grandson, it was the cookies that always seemed warm and over sized, and usually served on her back step with some milk under the shade of the catalpa tree. Raisin cookies without the raisins, for I had tasted a raisin cookie once. If Mom knew I would be locked down for life, or at least until third grade. So I would go and knock on the back door and ask for Roger, sometimes knowing he wasn’t there. I was always invited into the kitchen and she always carried on a lively conversation getting me to talk more than I should have. I could make her laugh and I liked her laugh. Then out the door because ‘kids don’t eat in the house.’ Seemed ideal to me at the time. Mom would ask where I had been, ‘playing with Roger’. ‘You didn’t go in the house did you?’ ‘No’ came my lie. ‘Good, I do not want you in that house.’ ‘Why not?’ I would always ask and one day she turned, her face darkened and in her quiet voice she said ‘she has ringworm’.
I cannot imagine being ostracized for a common fungal infection. Mom’s fear was rooted in her lack of knowledge, yet she preferred retaining her ignorance and fear over having a good relationship with a neighbor. The poor woman must have had it once but Mom went firmly believing it was a life long calamity of the most contagious kind. In my neighborhood I am the sick one in the sick house. I can only imagine what impression some of my neighbors have. I wonder how many of my Mom’s live about who fear the animal as mysterious and contagious.
I have learned to measure what I tell people, preferring to give them a card directing them to this journal rather than verbalizing my condition. Without knowing their frame of reference I have no idea if I am generating interest, fear, compassion or boredom when answering questions about the animal and me. It is best just to tell folks I am getting along just fine. My closest friends and associates and of course any one who reads my journal know more than they care to I am sure.
I have decided to forgo pain medication as a regimen, deciding to take it on an as required basis only. Once again this week I was plagued with the terrible pain of constipation. After two days of laxatives washing down laxatives I resorted to the nuclear option yesterday at 3AM. By early afternoon I was at last functional, with the knee numbing cramps gone. I made it through the night without pain meds and skipped them this morning. I hope the chemo has improved me enough that urinary pain is at least bearable. The next couple of days should tell the tale for the time being. Tragically I have found constipation to be a common thread among cancer patients. Based on my Google experience I see there is plenty known about it but apparently little to do about it. With all the research there are no available pain meds that will not also impact digestion. If it were mine to do I would certainly want some effort put into finding a working alternative for pain relief that in and of itself does not create pain.
‘I’m having kind of a hard time celebrating other people’. I had to admit I too felt a tinge. ‘Well, we have nothing really to celebrate, so I say let’s celebrate somebody else’s good fortune whenever we can. Personally I think chocolate cake should come with all good news’ came my response. We lapsed into silence again. I could tell her mind was racing. As she watches my struggle become more difficult she faces so many unknowns. Layered on top of that is the unjust burden of perceived sin. Personally I think sin overstates a natural reaction. There is burden enough for all without flailing oneself with loathing because of a natural human reaction. I want to tell her forget the preacher just this once and allow yourself a moment’s weakness if you may. ‘It’s just that it’s so unfair’. No argument there. I watched the land go by in an endless series of flashed images. I digest input and ideas a little differently with the pain meds effects. Finally I let the silence endure. Some things best left not said or responded to.
My second chemo treatment was yesterday and came off without a hitch. We had to wait a couple of hours for my prescriptions. Narcotic prescriptions cannot be fax documents or called in to the pharmacy. I officially became a morphine user, one pill every 12 hours. While we waited I grabbed a magazine and headed for the comfort station. Having not moved in 2 days or so I thought I would just sit and relax and maybe it would happen for me. I had repeated cramps for the past 12 hours or so that came and passed without gas or any other accompanying action. Just about the time I reached page 3 of the Saturday Evening Post an upward growl of the stomach caused me to lurch a bit and suddenly I dropped a full release. The stench filled my stall immediately. I reached around to pull the lever for a courtesy flush. There was no lever. This was a modern wave for flush, water and towel facility. Personally I am not a fan of hands free. I frequently cannot find the magic spot that turns on the water, usually wave madly all over the place and only occasionally get a paper towel dispensed. With a sharp cramp more was delivered. The smell of death now filled my end of the room. I heard a whimper come from the next stall. The door opened and an involuntary groan indicated the problem had reached the far end of the room. I was confident there was a flush button and struggled madly to find it behind my back. I heard a thud in the next stall, he may have passed out. ‘Whew’ came the faint voice at the urinal. Unable to get up yet I worked to rotate on my seat to where I could eye the water supply. My bowel was now empty. Nothing left to deliver. Yet the stench came on as if I had just started. Fearing something growing beneath me I moved faster. A faint whimper came from the next stall. At last turned I found the button and hit it. In a moment that which was had passed from view and nasal detection. Clean up was a snap and as I washed my hands I heard rustling from my neighbor’s stall, indicating he had survived. I left with a smile, feeling fortunate I did it at the medical center and not at home.
The scourge of constipation which I have not suffered since last June has returned. What a pain in the a.. so to speak. Twice this week I resorted to magnesium citrate, the nuclear option to clear the pipes. Awful to take but very effective in what is supposed to do. I hope to find a substitute that will keep things moving. The pain meds knock down the pain and stop traffic on my inner colon highway. I have 3 or 4 brands of laxative in house. I will start on two Senna a day tomorrow. I know from experience no movement in 48 hours means I have to use the citrate. If this does not keep things moving then it will be trial and error with other products until I find the right chemistry.
Without any digestive pain or pressure I have abdominal pain on the left side that is constant but manageable. The lymphedema presents an ongoing challenge in my left leg and mid section. We have increased the time devoted to massage and seem to be making some progress, although it is in fits and starts. Now 5 days since the chemo and I seem to have some improvement in urgency and pain related to it.
Sunday morning and I pushed my pain pill interval out to 6 hours. By then the pain was serious. Is it gas? Is it something else? The pain that comes in waves is gas I think. It appears every time I eat anything I will have some consequence at the present time. I took two pain pills and within 45 minutes the pain that would cause me to misstep was gone and the constant ache had taken the drivers seat. Inger reports my leg and groin have improved and swelling is diminished. As she worked her magic you could see the color restored and feel the lymph moving (at least is seems like I can). Even though it fills back in as soon as she is finished, it seems to fill a little less each time. The serious burning pain with draining is gone. It is now a discomfort, not a better rest before you try to walk pain. My head hair is still there and appears to be darkening. Strange effects of the chemo it would appear. This past week my appetite has dropped off significantly. By necessity when I eat I must eat very slowly to prevent horrendous belly aching. This started before chemo and seems to be progressing right along although there is no indication I am losing weight yet.
Are there signals now? My imagination soars. A shadow movement, a person in on the edge, a voice it’s signal lost. It is easy to fall for imagination so great the desire to carry on. I am blessed with a very active and intelligent full time Wife who is a constant mental challenge and makes sure I don’t go over the edge. To keep the focus on me she hides her own condition by discussing her issues with her Daughters instead of me. I cannot escape the irony that in 36 years of marriage she rarely vented to her Daughters. My swept silver hair is testimony in part to the same. In 2010 she diverted and it is a good thing there are two of them. Sometimes they remind me of the family of androids on the Star Trek episode that had a triangular stone hanging on their chest. They were all beautiful women save one, a male named Norman. When Kirk cut loose with his liberal logic the brunettes communed and when they could not answer they called for Norman to coordinate all of the minds of the entire android problem to answering the problem. Norman relied on a super computer. So my beautiful Daughters and Wife meet through the miracles of technology so many times a day and week through this long ordeal. A whole world without Norman now, I am left out of the loop, coordinating and staying strong thank you very much. Watching closely and caring so deeply. Women surely are God’s grace incarnate here on Earth with hearts so deep and strong. This relationship of Mother and Daughters gives me great peace. After the pain of loss passes the Widow will begin a new life, as it always happens. For her it will be a new place likely, for she has always been one to move and never look back, but only closer to her Daughters. Together they will find the happiness of life and move on.
Working with Nurse M I have a new pain regimen. I will switch from the oxy to a time release morphine sulphate, 20 milligram, two per day max. Joe warns it will initially ‘put me in the chair’. We’ll start next week after the next infusion. Rex has been of great help in demonstrating how a balance can be achieved and one can work productively while in constant pain. Hell, if he can do it I surely can has been my motto and continues to be. He is a hell of a lot more active than me always flying, living in motels and spending days on airport tarmacs and in hangers and equipment buildings regardless of the hellish weather. He always loved the winter. Back in the day we got some of our best business in the snow. We once paired up and took his turbo rear drive Thunderbird on a what ever you do don’t stop trip to Logansport and back in January to close a new equipment and system order. We were the only bidders to show up and got the order. That is what is called being a tough guy in the old fashion pre e mail, voice mail, smart phone, data base, six sigma days of business now gone for well over a decade. When it comes to my Brother I will never be as tough as he but always aspire that to be.
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.
Sunday the Hays family joined us for football and lasagna. We have concluded that football games are much more fun if someone comes to share the experience or if we go to do the same but difficult since we have no friends per say that are close and would even be remotely interested in sharing intimate space with us. I think we are a lot of fun, apparently not a widely held sentiment. Van and I are both very thankful that Jared and Jocelyn would take time out of their life to venture out in shitty weather with the grand dog just to share the snow with us. Chef Vanessa delivered a delicious and colorful salad, excellent multi noodle lasagna and a brownie desert. We popped the bubbly and toasted the New Year but otherwise did not drink as the young ones were still recovering from the excesses of their earlier celebrations. Keeping on schedule with the meds I reduced to one pill for 2 cycles.
12AM Monday and I am logging my med p2. We keep the log, a steno pad, on the end of the counter where her bible sets. We log the day and starting with first medication log what we are taking, for example;
12 A p2 (p1 would be one pill)
5:30A p2, gab, chol, sea
This is an important discipline, especially when it comes to the pain meds. Hard to take pills, hard to log taking pills, hard to remember to take pills after logging them, hard to remember to log them after taking pills. Let’s face it, another hard thing, thank you animal for this contribution.
Seven am, two hours since last pain dose, faint lurking pain in lower left front is managed by the medication. This morning we will try for a chemo round. It is hoped this might slow the tumor growth and perhaps shrink it a little, giving me some improvement in quality of life. The abdominal core pain presents itself each day and I have concluded this is a morning thing, probably gas. It is present and apparent but managed. I am balancing this with a single laxative pill every other day to make sure my chutes remain clear. Working today and getting a shot of chemo this morning. Found out the health insurance is going to cost us a lot more this year going forward. Extended hospital stays are absolutely out of the question.
It is back to work day. I started very early completing a contractor bid and getting it out. Chemo took up the middle of the day and upon return to the office at around 2P I dug in again. One thing for sure in my case, working makes me feel better. It takes a little to get going sometimes, to get ‘over the hump’, but once I get going I become motivated, focused and productive. The longer I work the better.
Chemo went well today. I got a prescription for much stronger pain medicine and declined it, 4 bucks a pill for one thing and 20 mg for another. I told Van when it get to 20mg of anything that would be much closer to the end and make mine morphine thank you. I will stick with the oxycodone tabs, 5mg for light duty, 10mg for rest at night and continue to work at those pain generators that I can do something about, like the edema.
Ah, so it is movement that causes it. Is it a blockage? I took a single lax after breakfast and await the results. Moving about brings on the core ache with a vengeance this morning. Frequency is the same, once per hour or so. Blood presence is intermittent and in small amounts. But the more I move the less I can. Now this is worth monitoring. It is a little over 40 and mid day, I’ll go out and push it to the limit just to see what happens. I timed my meds and have been maintaining a 4 hour interval taking two each time (max dose) since yesterday. The drug is reasonably effective for 3 hours.
I tested my sea legs a couple of times last night. After a few steps I begin to experience some ‘tightness’ for lack of better description in my mid section. This worsens with each step and basically makes it impossible for me to walk. Staying on the 4 hour interval I dropped down to one pain pill for the two evening doses and then up to two at the 2AM drain interval. This puts me on two at 6AM and in good shape for Vanessa and around 9 or so Inger. The lymphedema requires now daily therapy to keep under control. I still have significant fluid collecting in my mid section and while it moves out with massage it seems to move right back in.
Huddled up to our stove, Tucker in her fur coat and me in my layers we looked pretty analog watching a giant gila monster terrorize everything in site. Still only able to sleep in 50 minute intervals I have made 3-4AM Tucker time regardless of the weather. I remember in the past quiet times, a twelve year old huddled with his big brother on a worn out sofa. With cinder block on the east, sliding garage doors on the south, blankets and tarps on the west and the rough hewn plank wall of the coal bin on the north, the room had just enough for the sofa, a coal stove from Grandma’s, an old TV and jury rigged antenna. It was New Years Eve and Jack Paar was on the TV. Laughing and shivering with big brother and logging a memory that never drifted that far from conscious thought. Try as I may I have never been able to control what events I will remember or how I will remember them. This is taken care of by the remember gland in my brain I guess. Nor can I decide what I will forget, so I forgot to try.
Something I ate or didn’t. New Years Eve started with my laxative of choice (1) at 2 AM. As the first time it delivered but not too harshly. It worked at 5:30 A but left a terrible back ache. This morphed into a clean through belly ache to spine fold you over comin’ in waves pain. A double dose of pain pills and a bowl of bran at 7A and finally under control at 9A.
So here I am writing a little. I could here wax nostalgically on all that has happened in 2010 but I think this record should suffice. As I sit here I just want to go out and hug all of my neighbors (a felony I think), kiss my Wife (can’t find her), embrace my friends and family (again, a felony I think) for all that has been done and all the prayers said on my behalf. Fittingly, the year ends with the animal in attack mode. Fortunately I got in three or four hours of sleep last night. It is nine am, and I took the meds at 7 which ow explains why my typing has been reduced to fits and starts, my mind wanters, my head has gained 20 lbs in weight and I have that feeling that my body is moving backwards even as I am stationary. Holding hands up more difficult now, many typos being corrected with backspace, time to give it a break……..I turned the lava lamp on and put on some Dave Mason. I found myself incapable of doing much this last day of 2010. JG came by for a brief visit, I am just not back up to darts yet. By the late afternoon the temp has topped 60 at the house. When midnight came Van was down for the count, complaining of an upset stomach. We managed to roust ourselves up for a kiss and kept the cork in the bubbly. I went out and hollered at the top of my lungs on the front deck. I made it, it’s 2011.