Update and Fun with Puzzles

Chemo is done and I"m in the recovery phase, which is going slowly. I'm malnourished and in the hospital. Most frustrating is that I'm still having trouble with my appetite. It's not all gloom and doom, though. I'm rarely in pain and my mind seems okay.

I've been prescribed a new med to stimulate my appetite. A side effect is weird dreams, which have been fun.Weirdest was probably when I was interviewed about the dream while still in it. (interviewer=John Chancellor). In another dream I was dragged to safety during a category 10 quake by Terry and Koz-B. It doesn't take analysis to suss that one out, I'd say.

With so much time, I've begun doing puzzles. Here's one you might enjoy that I learned back in high school (I gave up on it then, but can do it now) - 

You have 12 almost identical billiard balls and a balance scale. One of the 12 is just slightly heavier or lighter than the other 11. You have to determine which ball is different and whether it is heavier or lighter using the scae only three times.  

Nightmares

You'd think I could come up with a nice adventure dream related to my reading "The Searchers" - a macho Texas Ranger chasing after captured settlers; a sympathetic former bilingual captive helping Cynthia Ann back to the Commancheria; even a member of Quanah's raiding party (but "I'll pass on the torturing part, guys.")

But,, no, I got stuck looking in vain for a bus to Montevideo in a huge parking lot, and having everyone more interested in my gringo accent than helping me out. "El gringito habla tan lindo el castellano."

From there I segued to an unknown family member's house where I kept breaking things and hiding them when the family checked in from time to time. Yuk!

It's day eight. My white counts are down and I'm running a slight temp. Nothing unexpected. Five  days or so before the usual upswing, One day at a time.

Hanging In

I'm still in the hospital on day five of the last chemo cycle. It's been tough, I can't lie. My lung biopsy resulted in a partially collapsed lung, which hurts. Luckily, that's now resolved, though the results aren't 100% conclusive. It's evidently very unlikely that it's cancer or t.b. Some docs are saying we may never know. I don't have any symptoms, just spots on the c.t. scan.

With that issue aside, I still feel really funky. It's hard to describe to those who have never had chemo. Neuropathy in my hands and feet is especially annoying.

I remain able to read a bit and I'm into "The Searchers", a recent release that covers the Cynthia Ann Parker / James Parker true story and the making of the movie based on the story. It's excellent. It's the third book I've read about the Parkers. Cynthia's son, Quanah was the first chief of all the Comanches.

Allegedly, I'll start to get better in 10 more days. One hopes.

Back in Hospital + T.V.

I'm back at the hospital. There was no crisis. Dr. K wanted a biopsy of my right lung which continues to produce some kind of spots. It is set for this morning and I'll pass on the results.

Last post I wrote about "The Killing", so I thought I'd list a few more network shows I'm into -

"Project Runway" - I've come to like and get a bit of education in designer clothes since turning 50 or so, and I've always liked dressing so I'm noticed. My wife and I watch together and we debrief with her BFF Ceiny. The show starts with 16 designers, losing one a week. They'll have to make clothes from duct tape, anything found in a hardware store etc. There's also an episode where they design their own fabric. They have to work fast and have tight budgets.

"Pawn Stars" - The gang from Rick's pawn shop in Las Vegas buys guns, cars, rare documents, and other stuff with experts coming in to do evaluations. The three generations of the Harrison family + Chum Lee have a lot of personality, and, as Rick says, "You never know what's going to come through the door,"

"Justified" - It's a modern day Western featuring U.S. Deputy Marshal Raylan Givens, whose specialty is the fast draw. Originally from Harlan County, KY, he's back there to serve. He has relationships with many of the criminals from the old days - ancient family feuds etc. Gangster Boyd Crowder often steals the show. While not an outright comedy by any means, it's often pretty funny, and comic book like. This softens the violence quite a bit, at least for me.

"Elementary" - Modern update of Sherlock Holmes. He's in NYC and Watson is a female. See July 5 post.

Last Cycle + Video Reviews

Subject to lab tests and exam, I'll be starting my sixth and last chemo cycle this week. I can't say I'm looking forward to it, but it can't end if it doesn't start. I've been reviewing what I can be thankful for to keep my thoughts positive. Number one positive is that I have no pain. Next, I'm able to concentrate and enjoy movies and reading. Finally, I'm really grateful for my support team - Terry, of course, and all the volunteer sitters / helpers / dog walkers. Dr. K has been great. He can be annoyingly detailed, but that's a good thing. He's already talking up my "recovery phase". I know he'll be with me.

Speaking of Dr. K, he told us his wife's grandmother was a WWII (aka Great Patriotic War) fighter pilot. I've read a book about these women. It's a fascinating story.

As for my recent movie / t.v. watching, I went back and streamed "Hopscotch" from Netflix. I've seen it a couple of times before, but it deserves a few watchings. It's a Walter Matthau / Glenda Jackson comedy action picture with two of my favorite character actors - Ned Beatty and Herbert Lom. Implausible, but a lot of fun.

I was lucky enough to tune in for Timmy's no-hitter.

Last night Terry and I watched the first episode of season three of "The Killing" (which we've been recording) and we are hooked. We loved the first two seasons. Luckily we watched them streaming well after they aired. I, for one, would have been really angry when season one didn't resolve if I hadn't had season two ready to go. The network has promised that this current season will resolve. BTW - no spoilers in comments, please.

Update + Movie Review

I'm now past the nadir of this chemo cycle - the penultimate. It looks like we're going to make it through without my having to go to the hospital, which is a good thing.

Dr. K confirmed that I am "cured" of my original lymphoma. These last cycles are prophylactic, like all cycles are for most cancer patients, of course. Unfortunately, I still have the new issues to deal with, the most pressing of which is that my weight is way down. However, I finally have some appetite, and I'm hopeful to get back on track eating-wise.

I've been watching a lot of movies and other video. Best has been "Looper", a time travel Sci-Fi thriller with a pretty cool premise. Bruce Willis hasn't shown much range in his career, but he does a great job doing his usual macho thing here.

I can't see traveling backwards in time ever happening. It would play havoc with verb tenses, for one thing (he he). We already travel forward, obviously. We could even travel forwards rapidly in theory. We just need to move fast enough, as you can see here.

Back of the Closet Blast from the Past

Back in the "Hippie Days" I bought a cool looking deer skin shirt-jacket. I'm wearing it on the cover of my Kicking Mule Records LP "Fingers Don't Fail me Now".

Eventually it stopped fitting me and I retired it.

A couple of days ago I got to thinking about it and realized with my current weight it could fit. It does and is now part of my rotation of chemo wear (see 5/4/13 post).

This got me to thinking about everyday information we should be cataloging somewhere. As far as my weight, for example, until I started having annual check-ups at about age 40, I can't remember how much I weighed during any given year. This would be interesting to know. I remember topping out in 1984 at 174. As for bottoming out, that would be now. Otherwise, not a clue, though I'm sure I knew at the time.

I recently found some diaries I kept during the early '60s. I was wading through boring paragraphs about my latest romances when I found some interesting detail info, like I was paying $15 a week for an apartment on West 14th on the edge of Greenwich Village. Can that be right? Well, a professional shave and a haircut used to be 25 cents, no?

On the medical front, my latest CT scan shows my intestinal blockage has lessened and I'm back on solid-ish food.

Dreams, Videos, etc

It's a cliche, but there's a reason for that. What choice do you have but to take it one day at a time, which is what I'm doing.

I had a dream two nights ago where I had this robot to do a bunch of medical things for me, like giving me pills. What would be cool would be to have a Star Trek transporter to send the contents of my bladder into deep space, or just the toilet.

I'm also heavily into day dreaming - playing guitar again better than ever, tooling around in our new car, walking the dog etc.

Watched the movie "Fire with Fire". Not great but made watchable by a terrific performance by Vincent D'Onofrio as a psycho, racist bad guy. I also saw "42", which I liked quite a bit. Really good performances, especially Harrison Ford's as Branch Rickey. Chadwick Boseman, as Jackie, was appropriately athletic. I've really been into the series "Elementary" and am about to bring the first season on home. And, speaking of videos, my YouTube video of Dylan's Duquesne Whistle is closing in on 10K. Please check it out, spread the word, and take me over the top.

My Friends, the Machines

Vitamix Blender

My life is currently being driven by two machines, The CADD-Prism VIP Pump and The Vitamix 1782 TurboBlend Blender. The first pumps TPN nutrition into my bloodstream from a bag in a backpack, while the second lets Terry prepare the food going into my poor abused stomach and small intestine. The blender came with an excellent cookbook of hot and cold purees, and I’m managing to eat pretty well. Salmon / potato soup, and cold pea soup with mint are a couple of early hits.

I’m enjoying being home. I’m still feeling weak, but experiencing no pain, except for some stomach discomfort, which is controllable.

I’m drawing a lot of comfort from my iTunes streaming music - currently Solid Air, my friends from Petaluma. I’ve also been digging The Duck Baker Trio, Ted Greene, Dinah Washington, Gillian Welch and Natalie Dessay.

CADD-Prism VIP Pump - Lower Left

Video Reviews

Thought I’d review some video I’ve been watching. 

Terry suggestrf this video blog by Jerry Seinfeld. It’s a fun concept, especially if you like coffee, comedians and cars, which I do. My personal favorite episode - Alec Baldwin. Best car - '69 Jag XKE (with Sarah Silverman).

As for movies, the best I saw in the last couple of weeks was "End of Watch" about two street cops in South Central L.A. Good performances, lots of action and a nice buddy bro-mance between the partners. Warning - It's depressing . 

"The Listening Room" was also watchable.The male and female leads worked well together and there were some nice action scenes. It was extremely cynical, and had one logical hole that brought the movie down for me. 

I also watched some episodes of "The Glades". Best part is the relationship between the hero and his girl friend. They are really cute together. I think I'll give up on it, though. The perpetrator always turns out to be a peripheral character. You know it's never going to be one of the main two or three suspects. I've called the results half way through for three straight episodes.

It's great to be home. Food is so much better, for one thing. The welcome from the animals was not as enthusiastic as last time, but Judy did give me some lap time. Terry is pillar of strength as always. 

Update - Finally

I can’t deny it’s been a rough couple of weeks. About half-way through cycle number four I fell down and had to get Terry to help me up. I wasn’t hurt, but was checked into the hospital when I reported the incident. 

Soon after checking in, things got worse. I threw up, a very bad development with an ileostomy.  A CT scan revealed irritation of the intestinal wall causing a partial blockage. They put a tube down my nose for a couple of days and had me take in nothing by mouth. This was followed by a few more days of clear liquids only. In the meantime they decided to drip TPN, which is a nutritional supplement delivered through your blood stream.

Currently I’m getting TPN and am on a diet of pureed food, like someone with a broken jaw would get. It’s pretty bad here in the hospital, but Terry has bought a machine to do the pureeing at home, and I’m allegedly going to be released today.

I also had a low grade fever when I checked into the hospital. It took them awhile to get a handle on it, but they did, and I was able to start round five of my chemo on time. I’m now on day four. On the plus side, I’m feeling little pain, and I’m able to concentrate enough to read, watch t.v. and listen to music. My weight is holding steady. On the negative side, I’m really weak. I can’t play guitar, and need a walker to get around. I also have no appetite and have to force myself to eat what I can.

So, it’s one day at a time. Seventeen more days on this cycle and then 21 days for the last cycle. Hopefully, I’ll be ready for my stomach operation by then. That will require recovery time, but maybe in a couple of months I’ll be starting to feel better.

More immediately, it looks like I'll be home today and see Judy and Koz-B . That will lift to my spirits.

Slide Guitar Agenda

Those of you who’ve been through chemo know how weak you get. You can feel the weight of a fork as you pick it up. Last night I was making heroic efforts to play good barre chords. This was right after I’d come off my four day’s of chemo from the infamous bag, a weak point in the 21 day cycle.

I actually woke up with a small bruise on my barring finger - bummer!

I went down to the Cancer Center today for my neulasta shot. One of their standard questions is “any new bruising or cuts.” So, I told my tale of woe. “Why don’t you play slide for awhile?” the nurse asked. WTF. That was it! I didn’t even know she played. I’m sure she didn’t know I played. 

I have an agenda! My calluses on the left hand are still there, though a bit soft. As for the right hand, my fingernails are still strong. I’m having to play pretty softly with my weak muscles, but I’m playing. Kudos to the nurse, whose name I never caught. I’m sure I’ll see her, though, and thank her. This could end up being a blessing in disguise by helping improve my slide chops. (The bruise, by the way, is already in full retreat).

Through it all I’ve got the loving wife, friends, pets, music listening, reading, t.v. watching etc. to keep me happy or at least happy-ish.

Since my last post, I got my weight up to 138. A good technique I’ve developed is the medicinal teaspoon of peanut or almond butter from time to time. It really binds things, which is an important issue, as I explained a few posts ago. 

With the 2/3 mark soon to arrive, I’m feeling confident and optimistic. 

Reflections on Baby Boomers

A few nights ago four of us were around the table after dinner shooting the breeze. We got to talking about singers and broadway show music from the 1950s --- music I never had much interest in. It made me reflect on the great differences from those who were teenagers in the 1950s and those who came of age in the 1960s.

1967’s “Summer of Love”, along with the increasing opposition to the Vietnam War, really made a huge difference in peoples’ life styles. Young blog readers, and some contemporaries, might not realize or have forgotten what a big deal these events were. Those who graduated from college before “65 tended to go the traditional route of getting “straight” jobs, getting married in their twenties, and settling down, while many from the class of ’68 and later were much less likely to immediately seek a career and start a family. Many pursued alternative life styles, becoming carpenters, instrument makers, musicians, concert promoters, community organizers, farmers, alternative manufacturers, perpetual travelers or just dropping out all together by joining a commune or religious cult or whatever. 

My wife Terry and I are on the cusp of the Baby Boomer Generation, one on each side (Dale’s birthday - Nov 30, 1944. Signing of Japanese Surrender Document - Sept 2, 1945. Terry’s birthday - Feb 2, 1946).

We fell solidly in the second group. We took drugs, let our hair grow and married in our mid thirties. After college I went into the Peace Corps, spent six months hitching around Europe, and became a musician and later part owner of a music store, continuing to play and teach. Terry kicked around for six years between college and law school, some of the time living in a communal house in Berkeley and traveling to Europe and Mexico for extended periods. Then she took up immigration law. 

Dale in the Peace Corps - 1968 and Terry (Center Front) with Roommates - Berkeley early '70s

Okay, I realize I’m oversimplifying, but I stand by my theory. I’ll also add that these differences seem much less important as you get older, and some of the older values like politeness, dressing nicely, and enjoying Broadway shows and Opera, have, hopefully, brought me somewhat into the “traditional” camp.

On the medical front, I’m back home in the middle of my second chemo go round. I’m feeling pretty peppy, probably due to the prednisone. The doctors are still not 100% sure what the issue is in my lungs, but the mysterious lung spots got smaller in between scans, so the chance of them being lymphoma are evidently VERY small now.

We had a very good discussion with a nutritionist who stressed taking in protein, calories and things that would slow digestion down like nut butters and pectin, and avoiding roughage including things you might not think of like bread crust and brown rice. I’m managing to continue to gain weight and and I’m now at 132 from a low of 119. “Fighting weight” = 155 to 160.

Count Your Blessings - Might as Well, They're All You've Got

I was whining to my wife a few days ago something like this - “I can only concentrate for about 30 minutes before I get a headache and have to lie down and close my eyes until it goes away.”

“Well,” she responded, “at least you can concentrate for awhile and you can get rid of the headache.”

Temporary Upstairs Dining Room

She’s right, of course. You really do have to take pleasure in what you can do, and appreciate the moment whenever you can. Agonizing over what you’ve lost, or do or do not have is a big waste of time. It’s always now and things are as they are.

I got to thinking about some of the great moments I’ve had over the last few days - getting locked into a tune streaming over my music system, watching the beautiful late afternoon / early evening light while lying on my lounger in the back yard, and having Judy curl up at my side and start purring.

In particular I remember a really nice dinner with Terry night before last. I was “stuck” upstairs with my pole and attached fluid bag. She set up a “table” in the alcove of our bedroom using tray tables inherited from her late mother Jane pushed together. We had a leisurely, “proper” dinner with cloth napkins etc. Dining like this has been an important tradition for us that has been thrown off since my treatments started, so this felt so calming and “right”.

Things are pretty good right now. Nearly ten extra days between treatments have me remembering what normal feels like and allowed me to gain five pounds.

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.

Being Active While I Can

I’m due to start chemo again in a couple of days, so while I’m feeling good I'm being active - uploading videos and pitching in with the cooking. This afternoon I walked around the block for the first time.

Speaking of videos, be sure to check out my YouTube Channel for all my videos. If you like them, click “like”. Here is a video I put up today.

As for cooking, I just finished one of the simplest but most delicious recipes I know and I’ll share it -

Home Made Croutons

Pre-heat over to 400 degrees F

Use one or two day old unsliced bread (fresh takes too long to bake).

If the crust is very light just start in, if it’s thick, cut the bread in half lengthwise.

With your fingers rip the bread into crouton size chunks (much better than slicing, I promise)

Put bread chunks in a bowl and infuse with extra virgin olive oil (pour in a bit, “stir” by hand. If necessary add a bit more etc). You want all the chucks to be well coated.

(You can add dried herbs, chile oil or whatever you think might spice up the crouton, but if it’s good bread and good oil this is not at all necessary.)

Place croutons in a single layer on a cookie sheet or baking dish

Put in oven. Check after 10 minutes. Take out when golden brown. It will probably take 15 minutes or so.

A Good Saturday

I’ve explained about how Terry is giving me fluids, but I thought you might like to see us in action. Our good friend Jennifer, who gave Terry a nice five hour break today, took these shots at my request. I'm holding the end of the tube that accesses my port while Terry gets ready to shoot me some saline solution.

Note my Missoni shirt (under the apron). I decided just because I was sick I didn’t have to ignore my designer clothes. Also, Jennifer is someone who appreciates things like that. Heck, the shirt under the Missoni has cuff links as well. Why not?

With Jennifer’s help I managed to record a tune. My playing sounds a bit rusty, but I like the performance okay. Here's the link to YouTube

Appetite

My appetite has been pretty poor for awhile. My abused gastrointestinal tract first had a huge tumor grow over it, pressing it down, and then had its large intestine taken temporarily out of commission. Not a prescription for a robust appetite.

Giants Jersey courtesy Eric Helbush

On top of this, as many of you know or have read, chemo can bring on a state where familiar foods smell and taste bland, strange or even nauseous. You know you need to gain weight, but you just can’t produce any saliva or enthusiasm. You choke down a few bites, chase them with a lot of water or juice, and tell yourself it is for your own good. In my own case, a bowl of cereal with yogurt, milk and fruit in the morning and a smoothie (ice cream, banana, berries, protein powder) in the afternoon were the only things that elevated themselves out of the “gag me” realm.

That’s why I’m happy to report that my appetite has returned. Thursday it was pretty good and then yesterday I downed - with enthusiasm - a bowl of cereal, a croissant, a turkey and cheese sandwich and, for dinner, homemade spaghetti sauce cooked by yours truly with help from brother-in-law Hank (chopped all ingredients, ate huge portions and teamed up for the the clean-up) and Terry (vegetables and clean up). Without the ingredients to make a classic Bolognese sauce, I improvised with onion, garlic, anchovy, carrots, stewed tomatoes and ground beef, simmered for 2 1/2 hours. For pasta we mixed 1/2 whole wheat dry with 1/2 traditional fresh (all we had left). It was an improv, but the two pastas added another layer of interest for me.

My Favorite Giant Sergio Romo's Number

For lunch today, a classic Sloppy Joe using the remaining spaghetti sauce. Yum. Such fun to enjoy food again.

If things continue apace, it’s take out Indian food (mild) from Ajanta for our Monday dinner with Carol (one hopes)! 

Our Garden

The first thing I noticed getting out of the car at home after my month in the hospital was how great the back yard looked. Everything appeared to be in bloom including the Cecil Brunner Roses above our arbor. This arbor is the human social center of our garden. The roses start giving shade in the mid to late afternoon, depending on the time of year. We have a wrought iron table and chairs from Restoration Hardware, plus two odd metal chairs from the late lamented Smith & Hawken outlet (a recliner is in the works).

One of joys of seeing the roses is knowing how hard Terry (with occasional aid from yours truly) has had to work with them. Their origin is at the bottom of the stone wall that divides us from our downhill neighbors (on their side). Jasmine, ivy and native morning glory have all tried and continue to try to strangle the rose branches. One doesn’t have to prune that often, but the pruning is not easy and Terry has to wear protection gloves, spend much time on the ladder, and lean perilously into our neighbor’s garden. This is the only real garden work Terry got in before the medical tsunami hit so she is especially thrilled by the glory of the rose bloom.

Our other plants are doing well, especially our lime tree, jasmine (on the back low fence), rosemary, yellow flowered potentilla, Australian tea tree, Japanese maple and the marguerite and strawberry tree in the picture. Fauna usually seen include squirrels, ravens, humming birds, scrub jays, various ground feeders (safer now with Judy into middle age) and butterflies. Our neighborhood deer dine in the front yard usually, but they’ll hop the back fence too.

Routine + Internet Improvement + Lincoln Review

I know it’s been awhile - chalk it up mainly to the internet going down for three or four days. 

Before getting to my normal ramblings (non detail oriented feel free to skip this paragraph) our daily routine consists of three home administered saline drip sessions, scheduled and emergency ostomy appliance changes, taking 25 pills a day and keeping myself amused reading, watching t.v., napping, playing guitar, pontificating on Facebook and keeping up this blog. As my nephew would say, now you know.

I want to write a bit about our latest AT&T tech guy and my optimism for our latest repair job. We’ve had DSL in this house for 13 years and it’s always been slow and funky. What the the first tech did was take one of our phone outputs and divide it into data and talk. Then we were given filter thingies to put on the other outlets. The way things went, the other phones could screw up our WiFi and, since so much was going on internally, problems couldn’t often be resolved without a visit to the house. This was true through 12 + years with 2Wire and the last six months with U-Verse.

Well this young man (early 20s probably) said, “to heck with this” and quickly ran a new wire from the outside of the house to a dedicated data outlet. The Data and talk divider is now outside the house. We now know, he swore, that any problem you have will have to be outside the house.

That makes sense to me, plus it’s definitely working faster. So kudos to the AT&T techo-nerd installer. And anyone with AT&T U-Verse or other DSL keep this in mind to suggest to your set up or trouble shooting guy.

I’ll close by talking about another movie I saw in the hospital. That would be be Lincoln, a terrific movie about striking while the fire is hot (among other things). Lincoln knew that the lame duck congress was his best and perhaps only bet to get through the 13th Amendment, and he did it. LBJ certainly understood the importance of timing. Even a slight delay can lead to no progress, witness the gun control issue. 

Anyway, It’s a bravura performance by Daniel Day Lewis, with an excellent script. It was also nice to see one of Terry’s and my favorite actors, David Strathairn, get such a nice meaty role in a major picture.

A thought provoking part of the picture is the question of what cause, tactic, or end is worth spending lives on. Obviously, the troops killed in battle are “legitimate” casualties. But what about Lincoln’s situation vis a vis the 13th amendment. The movie makes it pretty clear that peace could have come about sooner, but the slavery question wouldn’t have been settled to Lincoln’s and others' satisfaction. The Emancipation Proclamation was on shaky legal ground. So, he let the fighting continue, even permitting a Southern peace delegation to slowly make its way to Washington, while he maneuvered to get the amendment proposed and passed.

The Upper Terrace Walk Cancer Cluster

So far 2013 is shaping up as our worst year by far. Terry’s latest mammogram and follow up biopsy has revealed two labular carcinomas in her right breast - Unbelievable, but true. However, she could not have a less dangerous cancer. Quoting from the email she sent out to some of you, “I have seen the oncologist and the surgeon this week. Both are very encouraging. The surgeon says that right now it looks like a ‘stage zero,’ slow growing cancer with very little chance of spreading to the lymph nodes. I will have an MRI this coming Thursday to confirm that the two carcinomas are as small as they appear from the mammograms and ultrasound. The treatment options include surgery (lumpectomy or mastectomy), hormone treatments (for sure) and radiation (although I've already had two radiation treatments - a lot). Both these doctors are full understanding my needs in relation to Dale and are saying, ‘Don't panic. There's no rush.’ I, at least, unlike Dale, feel fine, have no symptoms, etc. The carcinomas were found with a routine mammogram.”

We’ve known this for a week or so, but Terry preferred to get a fairly thorough picture before we shared the info. 

We’ve decided to rename our patch of ground the Upper Terrace Walk Cancer Cluster or the UTWCC. 

I’m enjoying being home. My main annoyance is bone pain (those who have had chemo know what I’m talking about). I caught the great classic movie Here Comes Mr. Jordan on t.v. last night. Love that actor Edward Everett Horton. Remember his scenes with Eric Blore in some Fred Astaire movies? We also caught up with Project Runway - go Patricia! I'm managing a bit of guitar playing every day.

Signing off for now from the UTWCC.

Retail Therapy

According to Google, it was Marilyn Monroe who famously said, “When the going gets tough, the tough go shopping.” Well, a lot of Americans certainly do, including yours truly. Shopping is even patriotic and courageous. Remember President Shrub saying after 9/11, "This great nation will never be intimidated. People are going about their daily lives, working and shopping and playing, worshiping at churches and synagogues and mosques, going to movies and to baseball games." So, who am I to argue.

Terry and I have often discussed moving to cars with automatic transmissions, especially after one of us has spent an hour inching up to the Bay Bridge toll plaza with left knee tendons burning. Conveniently, automatic transmissions have made a huge leap forward in the last few years. The current Porsche DoppelKupplung PDK system uses two clutches, one for the even gears and one for the odd. So the next gear up or down has already engaged when the car shifts. A modern Porsche with automatic transmission actually performs better than one equipped with a standard transmission.

So, we’ve decided to buy a new car (or two) as we go through this [preowned new, probably]. Top on my list - the Porsche Cayman with the PDK system. 

Home Again

All 136 pounds of me is sitting at my own desk, weak as a kitten. But I just finished breakfast on my second morning home and it feels great to be here. I’m feeling better than yesterday and my optimism is pretty high that I’ll get through it all. I think I’m close to the 1/3 mark, though the reattachment of my large intestine will be tacked on to the end of the original time frame.

Now I’m going to give myself a pat on the back (Here goes the right hand - felt good. Nice pat) for installing a bannister on our stairway.  We had been thinking about getting older and how a bannister might be necessary soon, so we had it put in in January. I could probably be making it up and down the stairs without it in my current condition, but it certainly helps.

New routines are in effect now. We have a regular dog guy who picks up Koz-B at 10 a.m. and keeps him until 2 p.m. or so out running around with some other doggies. Koz-B is a pretty social little guy, so it’s good for him. A friend of ours and a local teenager are helping us out with walks later in the afternoon for the K boy as well.

Judy, the cat, seemed pretty happy to see me. Of course you can never be sure with a cat, but she has been following me around and snuggling up against me.

Chemo brain is showing itself. I picked up a towel yesterday morning that appeared to be glittering in some strange manner. WTF?! On later observation, it appeared normal. 

Terry is administering fluids to me. She has to flush my Bard Power Port, and attach a bag of fluids to drip into me  for four or five hours, and then re-flush at the end. I'm getting two sessions of this per day. The home version of my moveable fluid cart is much lower tech than the famous hospital "espresso" set up.

Major kudos again to all my visitors at the hospital and the great cards I received. It made a difference.