Medical Update - (Techno-Babble Alert)

I learned more about my ileostomy yesterday when the surgeon explained that temporary ones like mine are several inches from the end of the small intestine to make reconnection easier. Those few inches mean I have less intestine and, therefore, time to get the nutrients from my food. Basically, I have to work harder than someone with a permanent one to keep on weight. All I can do is keep working at it, eating as much and as often as I can.

Today I got the skinny on the issue I have with my right lung. After numerous tests doctors tell me it’s “most likely” a fungal infection. The good news is that they have ruled out aspergillosis, which is very serious and common among people undergoing chemo. 

There is still a possibility it could be lymphoma, but, since the chemo has been so effective against my tumors, they don’t see how a new growth could appear.

To deal with the (hopefully) fungal infection, I’m starting a new med called voriconazole. If it works, then they’ll know they were right. The drug costs a fortune in co-pay, and warns of the possibility of hallucinations. That, actually, could be cool depending on what they are. I remember really enjoying the side effects of an anti-malaria medicine we took in the 1990s for a trip to India. 

The lung issue has put off my next chemo treatment until Wednesday, if the fungal theory is correct. I’m sort of bummed about it, though I am feeling a bit better as the days without chemo go by. Obviously, though, It puts off the completion date.

Things are continuing in our new routine. Neighbors and friends bring by some very good food, and our “staff” of volunteers continue to put in hours. I’m doing a lot of music listening with some guitar playing, blog writing, t.v. watching and reading thrown in. 

Listening to Music

Like most everyone, I’d guess, I can’t remember when I first started enjoying listening to music, but it could easily have been when my father, Dale Sr., would sing my late brother Mead and me to sleep with cowboy ballads and pop songs from his youth, like Carolina Moon or When it’s Round Up Time in Texas. He’d also sing working in the yard or driving us to school in our ’49 Ford Coupe.

Later, like most of my generation, I have really fond memories of those little record players that folded into a cube with a handle. They played only 45s and created an instant party plugged into the nearest outlet (with the parents hopefully somewhere else).

In the early 60s LPs became the big thing. By the mid 60s the LP was an art form in itself, with gorgeous packaging and intensely thought out programming of each side. The release of a new LP by the Beatles or Dylan became a major event, with listeners gathered around in awe - “Wow, did you hear that? ‘The Ghost of Electricity Howls in the Bones of her Face’! Heavy.”

(Late adolescence and early adulthood also ushered in going to live concerts, coffee houses and bars with live music. This got me wanting to play on stage, but that’s a whole other story. For now I’m going to to continue to concentrate on home listening.)

The CD revolution caught me by surprise. I should have guessed when Kicking Mule Records contacted me with a very special deal to buy out my inventory of LPs sometime in the 1980s. Before I knew it people were putting their LPs in the basement and going over to CDs. It was a shock for me, but I rolled with it, playing both LPs and CDs into the 1990s. 

I had mixed feelings about shuffling tracks. Artists (including myself) had agonized for hours over programming LPs, and now anyone could punch a button and rearrange the whole recording. However, I can relate to the power-to-the-consumer ideal. I began shuffling myself, and even contemplated buying a fancy player that could shuffle six CDs.

I didn’t buy a first generation iPod, but I got the second generation one (2002 or so) and jumped head first into that technology. Within a year I had transferred my CDs and joined iTunes and purchased new music that way. Eventually, some company offered a turntable that could plug into a USB port and transfer directly from LP to digital on the computer and from there to my iPod. Currently, I have over 12 days of music on this amazing device (now a IV Generation iPod Classic) doubled on the computer.

When I first got my iPod I carefully created categories that weren’t already on iTunes, like Flamenco, Opera, Solo Guitar and African. I’d choose one (Previously mentioned or Jazz, Rock, Experimental, Classical etc.) and listen on shuffle. Then, about four years ago, I made a mistake and started playing in the root position on shuffle. I’ve never gone back. Now, when I listen to my iPod or streaming from iTunes, I’m in the root position on shuffle. I never know what is coming next from my 12+ days of music. There are some jarring juxtapositions, but mostly it’s great. In my current situation, I’m listening to music intensely with eyes closed four or more hours a day. I don’t know what I’d do without it.

Many of my “sitters” leave with a “I should listen to more music” comment.

What I have on iTunes and my iPod  - Video posted since my last entry

Retail Therapy Complete - Extra Week

So we pulled the trigger on the Porsche upgrade. With some sadness and nostalgia we sold our 1978 911 SC and bought a 2009 Cayman. The decision making process is all covered in my previous post - "Retail Therapy".

Our New Car. Old Porsche Shown in First Picture.

In the meantime, something showed in up my lungs that has put off my chemo for a week. Dr. K is convinced it's not a lymphoma issue, but a fungal infection. I'll have tests on Tuesday to check it out. Good news is that I'm feeling pretty good with the extra non chemo days. 

There's a good chance I'll get some music videos up in the next few days. I'll post links.

Terry off to the Dog Park with Koz-B

Roommates

Thought I’d talk about the Comprehensive Cancer Center, where I spend most of every Monday and Thursday.

Dale at Caner Center - Note Terry in Mirror

Most treatment rooms there feature two beds with two visitor chairs (along with all the medical paraphernalia). This has the potential to be pretty funky, but we’ve had good luck. Most of the time we’ll strike up a conversation with the other patient / spouse-sibling-friend duo. We compare tales of woe and “war stories” about our medical situation, discuss family cancer history, chat about aspects of our beloved Berkeley (gardens, history, restaurants, bakeries, street characters, current state of repairs on Chez Panisse etc), and get into stories of others with similar medical problems, usually balanced between the negative and the positive. The nurses and doctors get involved and it often evolves into a reasonably pleasant morning or afternoon, with a portion of the participants happening to have tubes running from them into beeping machines. Patients are given a “bye” to fade into and out of paying attention and take a quick nap as needed.

It’s not an interaction I envisioned six months ago, but it’s a societal gathering that helps pass the time better than expected.

Things are going along. My spirits are not quite soaring, but they see the light at the end of the tunnel and enjoy what they can, as described in the first paragraph. Maintaining weight is a constant fight. I dipped down to 124, but it seems I’ve perhaps stabilized in the high 120s. If I can push into the high 130s, I’d be happy. I’ve been walking around the block okay, so hopefully my body is not “eating” muscle mass to keep going.

I’m still sleeping (or hanging in that in between state), reading, listening to music, playing guitar and watching sports. Same old new reality. 

The new car issue discussed in “Retail Therapy” will soon happen. Stay tuned.

Dreams

It’s really great to be home. I slept about ten solid hours last night, with the Ms by my side for eight of them. Both our pets were really glad to see me. Of course, one expects a good greeting from one’s doggie, but one never knows with a cat. Judy (our cat) actually jumped in my lap, sniffed my nose, and started purring. That’s pretty clear she was glad to see me, no? Very Rewarding!

I was dreaming all night and remember two dreams pretty well. 

In the first I was staying in the basement room at the house I grew up in on Reno Rd. in Washington D.C. I went out the door and up the funky back brick stairs. (You remember, Marta. Maybe you too, Allison and Dalton). I got to the top of the stairs to discover there was a huge party going on in the back yard, which was all of sudden a different and much larger and more ornate back yard. A big ugly bald guy walked by with no pants on carrying a young woman wearing a bridal gown (calling Dr. Freud). 

In the second dream I was at the workshop of guitar builder Harvey Leach (who built a custom guitar for me - see picture). I picked out a guitar I wanted called “The Omicron Special”. I don’t remember much about it. I think it might have looked a little like the Princess guitar John Fahey played (see “The Red Pony” video by Fahey on YouTube). Anyway I started writing out a check with the name of the guitar in the “payee” field. I realized I was screwing up and woke up. That’s why I remember the name of guitar so clearly. I have no idea where this name came from. I didn’t even know “omicron” was a Greek letter until I looked it up this morning.

I’m hanging in there, entering the alleged best five days of my cycle before starting my next round of chemo. I’ve learned the next batch will be a little weaker, which is good news. It will be chemo treatment four of six, so the 2/3 mark is next to check off.

Hospital and Bad News Turns to Good News

At my regular Monday appointment, which fell at the end of the down days of my cycle, I was found to have low blood pressure and a temperature. I was immediately sent to the hospital. Since I had anticipated a long day at the Cancer Center, I had my Kindle and iPod with headphones. That put me in pretty good stead. Terry was able to bring my iPad on Tuesday, loaded with a fresh movie.

The guitar was a different matter. Because Terry was physically limited by a biopsy (more on that in a few paragraphs), because bringing the guitar entails bringing a backless chair and guitar stand, and because my stay was open ended, we kept putting off bringing it. This became more and more frustrating as a transfusion and extra fluids had me feeling better and better. I hung in there.

I just finished playing a bit, though, and it wasn't disastrous. So I'll go from there.

In the meantime, Terry and I each got some bad news, that turned out okay.

First my story

I have a history of temporal mandibular joint pain. It's always there but is easily bearable. On Saturday it was suddenly extremely painful to chew at all. It was the familiar pain, but worse than it's ever been. I guess it was part of the general bone pain that one gets during chemo. I reported this to my oncologist and he called for an MRI, being the thorough guy that he is. The scan showed something in my nasal passage near the ear. He was talking about a biopsy, but wanted to bring in an ear, nose and throat doctor to rule out any type of infection. So, during the 12 hour period between getting this info and the visit by the ENT doc I was thinking I had some new and different cancer.

Well, the ENT doc said it was nothing. There was some techno-babble involved, but think it was something to do with not having enough mucus. In any event it's not a tumor and everything is cool.

In the meantime the extreme pain retreated and I was able to chew again a bit on Tuesday. Now the jaw is back to the normal easily bearable pain.

Now Terry's story 

A couple of weeks ago she got an MRI to check if she had more small tumors that weren't revealed in the original Ultrasound. There were. Tuesday she had them biopsied. Just after we got home today her oncologist called to say they were classified "pre-cancerous" and were "no big deal". She added that a mastectomy is now off the table, and there is "no rush" to do anything.

Our Support "Staff"

Drawing by Ceiny Carney

It’s fabulous how our friends have stepped up during my illness. Terry has been able to keep up much of her weekly outside the house routine as our volunteers sit with me at home. Usually they don’t have to do much, but they are there for emergencies and to do simple but helpful tasks like minor clean up, dish washing and pill fetching from upstairs (when I’m stuck on the first floor, hooked up to my fluids pole).

All the different supporters and I have developed different habits. Don is into sports and movies, so we watch those when he comes by. Ceiny has the cool habit of drawing quite a bit of the time. If I’m into my book or nod off, she’ll sketch our house (I’ve posted a couple). Lynne loves to listen to and talk about music. She’s a big fan of mine and will have me play for her if I’m up to it. Susan is in the market for a car, so we discuss options and surf the net. These are just a few examples. Our volunteer “staff” is fairly numerous. I’d start naming others, but I’d probably forget someone.

Drawing by Terry's BFF Ceiny

With everyone there’s usually a lot of chit chat. My favorite topics are sports, family, history, books, movies, music and uplifting health success stories. 

My least favorite conversational topic is the I can top that health comment (e.g. “you think you’ve got it bad. I had this friend who had his head amputated and now he has to carry it around in a box.”) It’s human nature to go that route. I’ve done it myself, sometimes even thinking as I say it, “You idiot!” Anyway, it’s not really what most sick people want to hear. “Joe Blow had what you have and is fine now” is what one wants to hear.

I’m hanging in there. Worst complaint today is bone pain centered in my jaw. The bones are evidently working overtime to make white blood cells. That’s a good thing, but it hurts.

Anger, Lounger and Deer

Terry and I had our first big argument since the start of this blog. I won’t go into details, mainly because it was about 99.99 % my fault. It’s done now, though. So I thought I’d talk a little bit about arguing and anger. 

Unfortunately anger is an easy emotion to get ahold of, so that’s where we humans often go when we’re feeling emotional. It’s cathartic, but it’s a damn shame it’s almost always directed at some person or group (e.g. self, spouse, sibling, friend, the damn Republicans). As Rodney King said, “why can’t we all just get along?”

In my younger days I was a sulker, but I’m working very hard to pass beyond that behavior. I no longer argue while waiting or even goading someone into an insult so I can say, “I’ve never been so insulted in my life” and stalk off (I’m not talking about when the insult is the cause of the original argument, but about something subsequent that one is waiting for as a chance to grab the moral high ground, at least in one’s own mind).

Before Terry I don’t believe I had ever had an argument where the two parties come back to calm without ever ceasing talking. It’s a habit I recommend.

Chilling in the Sun with New Lounger

Now for the latest news. An outside lounger we ordered arrived today, and it is great. I now have another place to hang with nice bird sounds, beautiful plants and warm sunlight (except when there isn’t any).

Yesterday our local deer “herd” showed up with two new fawns. Cute, but annoying (Adios young plants, and look out for the dog). Interestingly, the older generation seems to have disappeared, so it looks like we’re still at four total. We’ll see.

Where I Hang Out

We’re lucky enough to have a large house, so I’m not getting too bored being in one place as I spend day after day here. However, I still have some favorite places to hang out. One is the bedroom, which you can see in the May 1 “Marking Time” blog entry. Also upstairs is our very cool Home Theatre Room. It features a nice comfy couch and 40 inch widescreen LCD t.v. with a surround sound system. In the small room the t.v. looks quite large. 

Plugged into it are our DISH Network receiver, a Roku player, DVD player, Laser Disc Player, and a classic VCR. I’m snug as a bug in a rug there, chilling out to sports or movies (e.g. my friend Don came over yesterday and we watched “Duck Soup” streaming from Netflix on the Roku - “How about 12 years a Levenworth or 11 years at Twelveworth” - “I'll take 5 and 10 at Woolworth’s”)

Home Theater Room, Psychiatrist Couch with Redwood Tree
Psychiatrist Couch (other view), My Office

Much of my downstairs chilling occurs on the psychiatrist couch in the living room. It’s nicely placed with a view of our redwood tree and proximity to the fireplace, which is helpful because of my weakened state. Also downstairs is the dining room, kitchen (see blog entry “Appetite”) and my office, which is where I am now. I’ll close with a poem by the great Jane Hirshfield about redwood trees next to houses.

Tree

It is foolish

to let a young redwood

grow next to a house.

Even in this

one lifetime,

you will have to choose.

That great calm being,

this clutter of soup pots and books --

Already the first branch-tips brush at the window.

Softly, calmly, immensity taps at your life.

Port and Pump Chemowear

Having a bag of chemo that I carry around 24/7 has led me to a lot of thought about my “Port and Pump” wardrobe. This is important because I have to be out and about, at least to the extent of going into the Cancer Center every day to replenish the fluid (i.e. change bags). 

I like to be styling when I go there. It’s one of the things I can have fun with at this time. So I put on a designer shirt. For pants, I alternate my two pairs of “ileostomy pants” (close with a drawstring) that Terry got me. For footwear I stay with my comfy SAS shoes with the velcro closure that can accommodate my sometimes swollen feet. My fedoras are out for headgear because I need to lie down or at least lean back so much both at home and at the Cancer Center. So it’s one of my 50 or so baseball caps.

I have a port in my chest, as you all know, and the fluid lines come out the bottom and lie naturally at a level between the second and third buttons of my shirt (not including the collar button). No problems there, but I’m limited when it comes to under and outer wear. V neck tee shirts are okay, but the V is a little high. I’ve broken out the scissors on one, which did the trick, but didn’t do much for the shirt. Terry bought me a loose crew neck and it works much better. I’ve ordered some extra low V necks on Amazon, and we’ll see how they do.

Left to Right - North Beach Shirt-Jack / 1938 Seals Jersey and Hat / New Diesel Cotton Sweater

The layer above my shirt is important because one of my favorite places to relax in the house is tucked in cold corner of our house, and we’re often at the Cancer Center after dark when it’s chilly even on hot days. My skinny frame offers little protection. Around the house I’ve been wearing my two Pendleton shirts in rotation over my regular shirt, but I feel that look is not up to the out of the house image I’m shooting for. 

Rocking my Missoni Knit. Pole with Fluids is Connected 50% of the Time at Home

For the Cancer Center I’ve got four looks going on now. One features a nice snap front leather shirt-jacket from North Beach Leathers. Another option is one of my cool baseball jerseys. These aren’t so warm, so I usually add a two button sport coat that buttons up right below the chemo line. Another is to wear my gorgeous woven woolen Missoni shirt. Finally, Terry just bought me a nice Diesel button up cotton sweater, which will be great because it’s lighter weight and color than my fall looking Pendletons. Of course, I have to carefully coordinate my baseball cap to each look.

New Round of Chemo, Lesson Learned, and Thanks

I started my third round of chemo yesterday. I’m walking around with my own little pack and pump that his shooting me the juice in 24 hour cycles. We’ll be going in to the the Cancer Center once a day for a refill.

With modern counter measures, or whatever you call them, I’m feeling pretty good and the prednisone (taken orally) is keeping my appetite up. I’m still able to play guitar and might even put something up on YouTube. I’ll post here if I do. Sports on t.v. - Go Warriors - and Wallander police procedurals on the Kindle are filling up the rest of the time very well. The mid-point of the whole process is in sight! 

I learned a lesson the hard way day before yesterday. I pulled out the Indian food leftovers, mixed some stuff up and microwaved it for lunch. At Ajanta (really great Indian restaurant which is luckily very close to us) they include spinach with the meat main courses, and black eyes peas with the vegetarian main courses. Previously, I had had everything except the black eyed peas. This time I mixed them in. Big mistake. I had the mother of all stomach aches.

I was able to man up and ride it out with help from anti-nausea and pain pills, and the knowledge that stomach aches do pass eventually. So, no more black eyed peas for a few months. Luckily, I woke up yesterday with a normal appetite. It was an eight hour incident that is now behind me.

Nice card arrived in yesterday’s mail from the Ross-Hanna family. Thank you! And thanks for all the comments here and the emails, and the nice phone call from Marta and Martin. Love you all.

Marking Time

I’m taking it one day at a time, which I guess is what we all do anyway. I start my third round of chemo tomorrow. I’ll evidently leave the Cancer Center with my own little chemo pump and come back to have it refilled every day. 

Our friend Carol brought over some Indian food Monday night, and I not only enjoyed it then, but have been having the leftovers for the last couple of days. Everyone says one has to go bland during chemo, but I’m finding that to be not so true for me. My taste buds are definitely off, but not totally. We did get extra mild on the goat curry and kofta, though. I'm not so confident of my stomach with chile pepper.

Terry (hidden), Koz-B and Judy

Still spending my days noodling on the guitar, noodling on the computer, napping, reading (currently a Kurt Wallander police procedural), listening to music (which is often simultaneous with napping), and watching sports on t.v. (Giants and Warriors).

I’m including a picture of our little family I took this morning. Terry is that lump under the covers in the left foreground.