A regular guy

Things are flowing along just fine these days. I started walking regularly, a little over a mile a day, and I have been active around the house. I even went to the driving range on Monday, first time in six months. I didn't swing hard, since I have no left hip, but just tried to stay balanced, and it went well. So, no hip turn, shorter distance, but who cares? I see a twilight round in my future.

I am getting chemo as described before, every ten days. We have dropped the vincristine because of the stomach problems it causes, and the neuropathy has spread in my hands and feet. I couldn't type before, and now, sheesh. Otherwise, not much negative effect, mild nadir around days 4-6 after the chemo, like today and yesterday, for a few days, just feeling a little low energy and stomach ache. My legs are feeling the effects of adding walking, and with Metamucil every night, I am as regular as the sunrise.

Dana and Stacy are at the world's happiest place, Disneyland. They went down yesterday, coming back today. I am spending my days just puttering around, driving Dana nuts, moving stuff around. I have spent a little time working on the blog-to-book project, but not nearly enough. It seems too daunting. I am hoping to go spend 4-5 days with my brother at Big Bear lake, in a cabin a friend of mine has offered us to use there. That would be right after chemo in the 7th, coming back the 11th. I have to be back for an appointment with Social Security, very important.

So that's the nut of it. I am actually considering putting on the wet suit and flailing in the ocean, we'll see. Maybe just with a boogie board, because I don't think I could motor my surfboard for more than 15 minutes. I might drown trying.

I forgot to add this poem:


Gathering

I am gathering things,
living things,
bribing them to come closer
with seeds and nuts,
asking them with food and water to open to me,
begging them to show their beauty,
to display their force of life
so that I can breathe it, see it, feel it,
gather it into my arms and my mind.
I walk the dog and smell the roses,
the orange-reds and pinks are best,
and the honeysuckle melts me,
and I hold those scents of Eden in my mind.
The flowers are a glorious palette,
every color I ever wanted to be,
rainbows scattered in my garden.
All this life force can’t sustain me, I know,
but it charms me so that I
feel less pain, and I step outside myself.

I sleep with the window open
and the fan on, and hear the sound
of water rushing down the street as the
neighbor’s irrigation leaks,
and I am by a river in the Sierras,
wind rushing in my tent,
nestling in my bag,
sleeping the sleep of the healthy wanderer.
When the steroids wake me too soon,
I rise back to reality, ready or not
to greet the day, thank the world
for another day, to gather beauty and breath.

Obstructed

Writing this Saturday morning:
Here I am in the hospital again, French Hospital. I’ve been here since Monday night, and now it’s Saturday morning. I have a bowel obstruction that won’t resolve. This is amazing to me, but I brought it on myself, I think.

After receiving methotrexate on June 4, I was to follow with dexamethasone for a week. I realized on Monday the 14th, as I was getting ready for my next dose of methotrexate, that I had continued the dexamethasone all along. I had been constipated since Friday, and when I mentioned this to the doctor he said I had constipated myself with the decamethasone and the vincristine.

So he sent me home to treat first the top down, with Miralax. One dose should do but use up to 4. If that does nothing, then start working from the bottom up. The Miralax did nothing, so I went and bought Fleet enemas. My body absorbed the first one no problem, nothing ever came out. The second met with similar results, very little action.

Meanwhile, mind you, I had stopped eating anything around Sunday afternoon, and was getting pretty hungry and swollen. Dana wanted to know what trips I would like to go on over summer vacation, and all I could think of was Old Faithful or maybe a gas extrusion lab. I called doc and he suggested stool softener, Colace, and that said if it didn’t would in a couple of hours, I needed to get to the ER for Xrays.

So Monday night I went into ER, very quiet there, and they took some pictures and sure enough I am obstructed. They inserted this horrible tube thing down my nose to drain anything they could, and put me in the middle bed in a room. On my left was a dementia patient, and he was screaming in pain, at times coherently. He had a 24 hour caregiver, big guy. He would then calm down and ask crazy questions, and try to leave his bed. His caregiver spoke in a loud and firm voice, and their TV blared. On my right was a man sleeping and snoring like no other. He was a hurricane, a vortex, sucking all the air in the room and expelling it with huge force. He did this for 23 hours straight, only waking to incoherently answer some question.

I had reached insanity. In the middle of the night I called the nurse and asked to be discharged, and told her the pain I was having was better resolved at home. I demanded the head nurse, and when she came she was angry, telling me I could not drain this obstruction if I left. I decided to tough it out with the promise of better digs the next day.

So the sleeper left and I took his spot, where there was a TV and I could watch the fix known as NBA complete its debacle. Right across from this room is the nurse’s station, so they put all the trouble patients in this room for easy access. I’d like to think I was there only because it was the last room. The demented man was still there, being demented, so I asked for a quiet room at the end, and that’s where I am now.

It’ 6:00 in the morning, and I had a great night sleep. There is a man in the other bed, sleeping quietly. I will be going in for another x-ray soon, to see if this obstruction is moving. I get broth, jello, juice, more juice and tea and sherbet at meals. I drink it all, bloat for a while, then that all absorbs. The last food I had was Sunday night I think. I am hungry.

Sunday afternoon, I am home. The obstruction is gone, and I feel much better, but I weigh about 152. Very weak, so I have to get back to a walking regimen, and some small weights, just like Bill says. I really feel like it has been taken out of me this time, it was just so unexpected to have to stay in the hospital another week. Oh well, life goes on.

Just checking in

There hasn't been much to say. I have been going through that low-spot of nadir, but not nearly as bad as in the past. Instead of sore cheeks I have a sore tongue, and couldn't even eat a banana last week. It is much resolved now. Of course, with the renewed steroids, I haven't crapped in 3 days and getting a little antsy. Pounding the fiber and liquids, and the basketball in my gut will be used at the Celtics victory game on Tuesday.

The chowderheads (Mike B, Jack L) have been getting together for games and cooking great meals - last night was lasagna with ahi-ahi, garlic bread and super fresh salad from Sue's garden. Steaks and rice with salad the game before. As long as we eat well, the Celtics WIN!

Downside of course is with no pooping and lots of eating, I am really sore and can barely move. I am very unmotivated to do anything these days, sleeping very poorly, 4-5 hours thanks to steroids. Dana is improving a little, and looking forward to the end of school.

When I go in to see the doctor today, I will ask him how much travelling I can take on. I am guessing small 3-4 day trips are feasible, as the week I get the chemo isn't bad, but then nadir the following week sucks a little. I will get chemo today and tomorrow. This morning young John and I will do some housecleaning, hah, if he wakes before noon. Really busy days.

It has become very hazy in my head, to see what I am fighting for any more. I never actually feel any better, just degrees of lousy. I bring the dog to the park and scan the hills for all the beauty I can find, and listen to the kids playing, and somehow it is enough for another day. It's as though I had this giant plastic cup when I started in life, and each time I drank from it the rim wore down a little, and so now it is only a small cup but only needs a little joy to sustain me.


HAPPY BIRTHDAY PAT! Man, to be 39 again.

Love the polar drugs, and Eskimo Pie

I started my chemo routine yesterday, and here is what it looks like:
Started with some anti-nausea, not sure what, similar to Zofran.
Methotrexate, 190 mg. I will get this dose every 10 days. Not too daunting. I received 6000 mg 3 weeks ago in the hosp.
Cytarabine, 142.5 mg. I will get this dose every 10 days. Again, not bad. I received 24,000 mg 3 weeks ago in the hosp, over 4 doses.
Today I received Vincristine, 2 mg. I get that with Asparaginase in 2 weeks. I was supposed to get Asparaginase now, but they make very little of it and we can't find any. I had Vincristine to start every month in '05-'07, nicknamed 'numbmeup' for its neuropathic side effect. Made from Periwinkle. Good excuse for the dropsies.
Leukovorin 4x daily to wipe away the Methotrexate. Without this, the methotrexate will eat away the bone marrow.
Dexamethasone, a steroid, 10 mg/day, on top of the prednisone (5 mg/day). So my hip may feel better soon, and my Tourette's Syndrome will be &*%&*%&ing free to roam. Asshole.
Prosiconazole to fight the lung infection, 5 mg liquid 3x/day
Acyclovir to fight infection
Dapsone to fight lung infection (that didn't work)
Prograf to dampen immune system.

So there it is, nothing new under the IV, different doses is all. Not much in the way of side effects yet, a little hormone rage maybe because the simplest task is not simple. Low point will come in a week, so we'll see how low I go.

What is really annoying now is that Dana is having bad headaches, going on 2 weeks straight now. CT scans show nothing, blood tests show nothing, anti-allergens aren't helping, migraine meds aren't helping. This does coincide with when I came back from the hospital, and lingered as Johno moved back, so ...........

Now as far as loving all the polar bears, as avatars for humans, I congratulate Earl on this ability. Everyone loves him, so it makes sense. Unfortunately, I see polar bears in the gulf, shitting all over the place. I see them starting stupid wars, for whatever stupid reasons, and leaving stinking piles for the rest of us to clean up. They want all the other bears locked up, but don't want to pay for it.

They are running scam campaigns here, throwing corporate money at propositions designed to give corporations monopolistic power, and all the people can see is the sleight of hand. I cannot love and value everyone; I am compelled to call out an amoral scumbag when I see one, especially when they are trying to hide behind the flag and the church.

The polar bears are just being polar bears, I agree, and I do love them. It's too bad we can't stop destroying their environment. Some day, we will only see them behind Lexan walls. I love and value this earth, and Earl and Pat and many other humans, but God save us from ourselves and our greed.

The Neocon in me

I drove up to Berkeley on Saturday and packed up young John's stuff, as he is moving home for the summer. We then moved his girlfriend to an apartment in Oakland, just a step up from some cardboard boxes in an alley, but inexpensive. Her parents were there to move her, and they took her over to the Big 5 and got her loaded up with some weaponry, and then on to the hardware for deadbolts and padlocks. She'll be OK, what could happen in a bad section of Oakland in the summer? John and I headed back to SLO. For a couple of nights, the whole family was back together. I tried hard not to fall into old roles, and mostly succeeded. I do not need to be Alpha any more (right!).



Mikey moved out yesterday, down to Santa Maria where he goes to school, 25 miles south. This meant he loaded up his car with a few items and headed out to a meeting at school at 8am, and young John and I loaded the wagon with everything else, such as the bed, desk, dresser, clothes, etc. He left his room, now John's room, in a terrible state, his junk everywhere. It will all get shoveled into a box for his supposed return in August.Of course, when he was leaving in the morning, both his mom and I had tears in our eyes as our youngest left the nest. This was somewhat tempered by the fact that his older brother was sleeping in the family room at that moment.

As part of the process of getting him off on the right foot, I went to Costco to stock him up with some things. I figured I could get stuff both households needed and split them. Every time I go to Costco, I am struck by the largeness of the average American. At Costco, they are massive, and they are buying massive amounts of stuff. So I get a mass of stuff and get in line. Usually lines at the Costco register are pretty quick, but I am not lucky in selecting lines.

I get behind this 30-something lady and then realize she has two fully loaded carts. OK, no hurry, John isn't ready to go to Santa Maria with all Mike's stuff. She gets all $400 worth of her stuff rung up, and says to the guy, 'Oh, there are seven in our family.' Right away my hackles go up. I think, just like Groucho said, 'I like my cigar too, but I take it out of my mouth once in a while.' The card she hands the cashier doesn't work, and she says, 'Well it's food stamps, and I know there is over $700 on it. Things are tough right now.' While saying this, she spills her Starbucks coffee all over the aisle.

What was shocking to me was, I caught myself thinking like Glen Beck or Rush Limbaugh, jumping to all these conclusions about this person that I didn't know anything about. It was so easy just to let my mind run with it. Finally, though, I caught up with myself. Who knows who she is caring for, and what she has been through? The whole moment reminded me that there is a prejudiced, bigoted jerk inside me, and that it needs to stay there.

I never did post what I had decided to do about choosing between a long shot at more years, or a sure shot at 1-2 years. I really cannot see taking a wild swing at 10 years, and ending up either dead after a short hospital stay, or a long hospital stay and then dead. Instead, I am opting for a maintenance chemo routine that should give me 1-2 years, and hopefully the research will continue to advance and I can keep advancing with it. All in all a tough decision, but the Magic 8 Ball is usually right, and best out of 3 coin flips sealed it.

The fungus in my lungus is not going away, in fact it is getting a little colonial, so today I switch meds from voriconazole (VFend) to prosaconazole (Noxafil). Anthem Blue Cross was dragging their feet on the new med until they realized each was $3K/month, so what diff. Noxafil is a slightly broader spectrum. I should also start this new chemo routine today, patience, patients, patience is a virtue. In general, I feel like any 56-year old with no left hip, a lung infection and a decaying muscular condition would feel. Happy to be here smelling the roses.