Took a ride down memory lane today. Drove by the California Maritime Academy and out by the old C&H sugar factory over in Crockett. Took some photos and talked about the old times. Went by the motel that the Dman and his bride first stayed in when they began the great adventure that was the Navy and moving cross country. Lake Chabot has become a 6 flags amusement park and the spot that at different times we both fished for stocked trout in the summers of our youth is no more. There is a new second bridge all concrete and asphalt with a $5 toll as opposed to the 45cents of my high school days. That Erector set iron construct still functioning for east bound traffic is much more interesting architecturally. The wind was thundering off the straights biting cold, piercing to the bone and charging the brain with a million volts. Probably the last ride out but a good one.
I have never seen a disease process advance so quickly. My friend is beginning to loose clarity. When he is lucid he is pretty clear that he wants to stay west and ride out the days. Then he is sure that he wants to fight and move. His oldest sister is trying to run his life and there has begun the clash of wills. Unfortunately Don’s will has been sapped by the cancer and the drugs and he has no chance against the forces that are arrayed against him.
I am tracking down the equipment and trying to get the momentum of a bureaucratic monolith to shift just a few inches to the left. I am drained by the by play of control freaks and the passive aggressive. Doctors that want to appear compassionate then when you call them they have their staff give you the runaround. Not charting an intravenous line is a pretty serious fuck-up so don’t piss and moan when I make you look up something that should already be there.
The holiday season is an excuse for people to screw off and blame the holiday. 5 days it has taken to get them to flush the IV that we didn’t need or want. The are not giving and have no plans to give medication through it so it is just another energy sink that we don’t need. We are behind the curve and it is not likely that we are going to catch up no matter how fast we dance. In the day we take to alter the plan it becomes obsolete.
The morning gave a little hope, we went for a ride and for about an hour and a half things were cool. I am now a little leery of him seeing another day.
There is an art to helping a person to die well. I think it is one of my few actual skills. I liken it to composing jazz. One takes the underlying structures, instruments and the tones they create with the music, medicines for the person and then blend an escape. Today I am weaving a tapestry of morphine and Ondansetron with Gabapentin and Oxycodone to enable Don to be pain free yet still converse with his visitors. Trying to find the right smells and textures for a person to eat when they have no appetite or when the yeasts and fungi have clouded the palette is another challenge. Tonight I am going to make a roast with potatoes and English peas but I suspect that Don will probably go for another cup’o noodles. Lots of sodium and msg but it is something he can taste and still swallow comfortably. The texture of food is another aspect of the composition that matters more as taste buds fail and the sense of smell fades. The other measure, the minor counter balance is to know when not to force food. You are not going to build up their strength that way and you may do more harm both by guilt and by too much gas. We are fighting the swelling of ankles today striking a balance between elevating feet and sitting up to be alert. Trying to walk a bit each day to keep the joints supple and knowing when that walk causes more distress than relief. It is an arrangement I have rewritten many times but it never seems to get any easier to hear the tune played or to pay the piper.
Today was supposed to be day 1 of a 21 day course of Chemotherapy. On Friday we saw the doctor and they laid out the program. Don went off to visit with some friends for the weekend but by Monday morning he couldn’t breath and was back in the ER.
The cancer has now metastasized to his pericardium and possibly to the heart muscle itself. “Multiple poorly focused lesions”, was how the doctor put it. They do not think he would get any benefit from chemo and he was too sick to withstand the drugs side effects anyway. “They have given up on me” was how Don put it.
We spent the day talking to various social workers and the palliative care specialist Dr. Ali, A very caring woman that helped lay out the options for pain relief as well as some new medicines to treat the nausea. We had to redo the living will paperwork as for some reason it was not on file and call various and sundry relatives and friends. All in all another really crappy day.
When you don't have any real hope a little false might just get you by. Que the Rally Hamster.
We have a treatment plan now, finally. In terms of final outcome the month spent fucking around with the diagnosis means nothing but it would have been nice to start the palliative care sooner. Enough bitching about the unchangeable let us move on to the next move. A 21 day course of chemo with 7 days off. He will get the Gemcitabine. On day 1,8 and 16 then sees the doctor on day 21. The next week is the off week so it is then that We will get Don moved back east. In the interim I am calling to make the arrangements and gathering the records he will need. We will need to go to the SFVA one more time to pick up a disc of his films and I have one more contact to make on Monday. I am also continuing with the move and that is part of the problem. The Doctor does not want him to travel in the middle of the treatment. That means leaving here the 14 of January after his last appointment and starting the 2nd course in Jackson a week later. Unfortunately because we got pushed into trying to move before Christmas we will be homeless on the 12th. Now I have to clean and move everything in two days instead of two weeks and I am somewhat pissed about it. Then the shit I busted ass to get ready for B&M to ship didn’t get shipped so I had to drag it back home and now will be doing that too. Lots of people making decisions and nobody else actually following up on anything leaving it not just undone but fucked up. On A positive note I found a nice Coleman tent at a great price at the Sports Authority. I have been researching tent heaters and have chosen this one that I can get at the local Sport Chalet but I am going to wait and see if they have an after Xmas sale. Thanks for reading the rants, good to have an outlet to scream at.
Thought it might be time to update the battle. We are trying to build Don up enough to take a course of Gemcitabine. This newest drug for treating pancreatic cancer will with luck provide a little improvement. The drug interrupts the cell division cycle by replacing one of the Base pairs in Dna and in Rna. Tumor cells are actively replicating more than most normal cells in your body so they will be disrupted more. Unfortunately the lining of the intestinal tract also has rapidly dividing cells in normal circumstances so nausea and constipation, already a serious problem may get worse.
We have been succeeding in regulating the pain meds to some extent and he is feeling better as long as we can keep the intestinal track moving.
I have been swamped with the details of moving out of the place and taking Don back to live with his family. The U-haul storage facility is clean and climate controlled so I am moving my art, books and photo albums over now and will move the furniture after Don gets on a plane. I will then clean out and close up the place before heading east to join him.
The timing could not be much worse for beginning my journey but the timing is always bad when a disaster happens. Driving cross country in the middle of winter is a bit dicey and I am not looking forward to it. I think Don is counting on me to keep his sister from controlling him too much so it is important that I get there in a reasonable time frame.
If he can take the first treatment tomorrow we will have a better idea where we will be going next. I fear that if he can’t start he will begin to give up. To the patient all will eventually be revealed
Reinvention is the great American Idea. We love a comeback in the third act more than any other culture. In that vein I am giving some more thought to my next act.
Living well is a relative term. For me it is more than creature comforts and extravagant entertainments. It is living by an ethical and moral standard. I have not always succeeded but I have tried. I lack the talent to write fiction and am too lazy to write nonfiction. The travel Idea works well for me. The thing I need to work out is mail and an address. The first place I think I will do is the Point Reyes area. The other possibility is the San Diego area if the weather is still cold. What I am thinking is that I can create a review of an area and an article that would have some market value. I want to bike camp and the unique factor will be the biking aspect. Pick a spot, set up a good route for moderate riders to enjoy for a week of vacation. The types of things I will include are of course restaurants, camp grounds and local attractions but also bike repair shops, places to park your vehicle or ways to get to the spot with your bike and gear on common carrier or public transportation. I can include reviews of equipment and post those reviews on sites that sell my gear to drive blog traffic. The open questions that I will have to answer is can I stay on the road all of the time. I may need to hole up in the winter and how hard will that be to find decent places for short term at a price I can afford. I anticipate it taking 6 to 8 months before I begin to see any return. Other possible revenue streams can be selling Photo’s. selling blog ads if I can begin to generate traffic.
Keeping my medicine filled. Keeping the mail and bills paid. These are the big problems with the travel. When I tried to do this type of walkabout before those were elements that fucked up on a regular basis.
As to my previous trip I am armed with new technology and less funding by far. The motor home was nice for the comfort but sucked the life out of things with the costs. That and there are RV people and I am not one of them. They are a nice group but they are for the most part older and much more conservative than I am. And I was in my 40’s during that trip. I am more liberal now if that is possible even though I have closed the age gap.
My original plan to bike across country may still happen but I need to get in much better shape again before trying it. I am going to have to put some planning time in and check my equipment. I think I will write more this time, can’t say it will be better as some of the stuff on that trip was good. Just failed to finish any of it. I was always more productive when out alone during that time anyway. After Rick died Don quit any pretense of writing anyway. What might have been, a sad phrase.
Having been around the medical business for most of my adult life as a consumer and provider of services I have seen far too many folks have to confront the Big C. It always sucks. Bummed that Don got stuck in the hospital after being hit with such tough news. I am not a big fan of the number range because they are probabilities that can become an enforced reality but this doctor was very good about not giving hard numbers . Tell someone they have 3 months to live and sometimes they give up at the three month mark. Dr. Pai did make it clear that this was an end game strategy session but what he hoped was the first of a few rather than the last.
“A tragic life”, that is how his sister described Don’s situation. Orphaned at 10, his wife dead from an accident and poor medical skills at a country hospital. A massive heart attack a few years later followed by an aneurysm and now pancreatic cancer. In between he lost his brother Rickey to a logging accident and suffered through osteoporosis.
Sucks to be the one losing all their friends to death but it sucks more to be dead. That is the limit of tonight’s profundity I am afraid. I have tried to live as well as I can for as long as I can and have endeavored to help those around me do the same. In a few months I will be the last of my tribe. More to follow in the days ahead. The Image is from the Huffington post but I have lost the link to the original creator and for that I apologize.
Friday we are heading to the oncology department for the plan of action. Based on what I have been able to figure out the options are bad and badder, worse and worser. Doesn’t matter how you slice it Stage 4 pancreatic cancer is terminal and as fast as my friend is fading I am thinking the short end of the range is in his future. They started to talk to him about treatment while he was in the hospital and when the options sounded pretty poor he shut them off. It is not my place to tell him that 6 months from now there is 99% probability that he will no longer exist. I am going to let the doctor deliver that blow.
I am going to enjoy the brief respite before the blow is struck. Don is visiting with his sister today and she is helping him pick up some new slippers and Pjs. Friday will come soon enough and tough choices will wait a few more days.
We were in Sacramento for an Xray and then tried a foot-long chili dog from Sonic. It was one of those disappointing moments that always happens when a franchise doesn’t translate to a new location. Two bites and D was done for the day. Shame, as when we were down in the south the Conney dogs were quite tasty.
Did not bring the camera and was immediately sorry. The Sierra Nevada were dusted with snow and the smog in the valley was rained away enough to see them. A rare and wondrous thing to lighten the day. If it happens again I will try to capture the look but will fail to convey the emotion it evokes.
Was not able to find the clip of the episode that Elaine forced Jerry to see the horrible film of my title for the second time but enjoy "Death Blow"
Don’t quite know How much of what is going on to share with the world. It is egotistical to think anyone is remotely interested in our little travails. I must have that level of ego as I continue to write with little regard as to the number of readers. For those following along at home Don got conformation that he has pancreatic cancer this week. He has gone from disabled to helpless in about 5 weeks so I am not very optimistic. I have tried to be positive for Don and there are improvements in treatment but with liver mets the prognosis is pretty fucked. He has been in denial through the whole process and I see no reason at this point to burst his bubble.
It is rather odd to me that in an age when the prevailing meme is that we are not exposed to death that I am and have been around so much. Had to tell Don’s sister that they were not offering surgery as the cancer has metastasized to the liver already. Pancreatic tends to get diagnosed late and that leads to the poor outcomes but D had been avoiding going to the doctor hoping that his problems would go away for way too long. It is always better to start treatment early. Not Going To The Doctor Because You Are Afraid Of The Answer Will Kill You!!!!!!
I do see one big improvement in the treatment of pain from the physicians. The suffering builds character bullshit is gone.
I am pretty bummed at this point in the process. Don is hospitalized with pneumonia and is having to face his lack of options. I am beginning to run down from the work load and the stress. Watching a friend go through something no one does well is no fun but if you care about others sometime you just have to suck it up and help them best you can.
