February 27, 2010
Special Report
Grandma Teresa has arrived safely to HQ, Jefferson Street, Petaluma, CA.
Ferried by nephew and niece-in-law and welcomed gratefully by patient, daughter, and step-grandson, Grandma gracefully refused lamb stew, gladly accepted tea, viewed her room (with an un-view), and began her 2010 American extended stay to help us through this marathon.
Posted by Michael at 10:45 PM
February 26, 2010
Day 9 & 10 & 11 - is that food?
This is starting sooner than I expected, but of course not a total surprise. 8th treatment today (February 26th) and the sides of my tongue feel a bit numb and food is taking on a generic flavor. Even ice cream (sigh) tastes like chicken.
At the risk of seeming that I want to be isolated (I don't) I want to also report that I notice I'm getting a bit cranky - short tempered, irritable, not very nice - especially when I am getting asked a barrage of questions like "how do you feel?" and "what can I do?" from very well meaning people (friends, family). [Claire just asked, "From a caregiver perspective, is grumpiness cumulative?" Funny]
This is quite the lonely road I'm discovering.
I have no idea what to say to people when I'm asked these questions and I'm tried of giving the same report over and over: It sucks, I don't know what I need, I don't know how you can help me. Everything is happening way too fast and the loss of control of all the things I once had mastery over is devastating.
It is good to talk about this and other joyous topics with the friends who are giving me a lift to the rad treatments. Honestly I think I could drive myself sometimes, but knowing that I'll have someone there means a lot even though I may not feel like talking about "how" I feel. I get a great deal of comfort from the humor that typically joins us for some stretch of the 10 mile trip to the RPCC.
I don't feel depressed, but it is likely I am. I think this must be the territory of depression. My brother called today and said that it is like I'm climbing Mt Everest and he wanted me to know that he is there right with me. That is a great visual and wonderful sentiment which I appreciate very much, but it is ultimately untrue. In his heart he is with me, in reality this journey passes in extreme loneliness.
This is, for me anyway, rather like a marathon, my first. Each night dealing with dry mouth, each day of difficult treatments, each liter of water, each bite of food - these are my milestones. I see that my preparation for the race has been when I have sucked it up in the past - school, work, life - just to get through a bad day. I am drawing on those experiences now and making good use of them. Tonight was a case in point.
I'm strapped to the table under the mask (not yet use to the claustrophobic feeling) focusing on my breath, counting the radiation passes, counting with the music (Traveling Wilbury's tonight - "I'm so tired of being lonely . . ") when I get this intense itch on my right shin.
Now, if I move, I risk having to skip the treatment because I will get out of alignment. So I go right into the itch, feel every microscopic nerve cell screaming for attention, knowing there is no way I am going to jeopardize tonight's treatment for a little itch. There was a lot of power in that and in a practical kind of way very meditative. Maybe a little strange too.
Big news: Grandma Teresa arrives tomorrow! We are all very grateful and excited to have her here to help us with the marathon. It is likely she is less excited than us, but she reports that she is "well up for it." In my heart I feel for her and - she will kill me when she finds I've written this - at her age (there, I said it) the sacrifice she is making for us is significant on many levels. I truly, truly appreciate her help.
A big shout out to SH for helping the kids at drop off today! w00t And to CR for the drive tonight and the 2000 calorie value meal.
Posted by Michael at 10:55 PM
February 23, 2010
Day 7 & 8 - Do they even make this anymore?
Weight 178 (day 7)
Weight 179 (day 8)
The ONLY thing I crave is this. The best ice cream in the land. Part legendary exquisiteness, part post-modern narcissism, mint chocolate cookie (formerly mint OREO chocolate cookie) by Ben & Jerry's is all I want all the time. There is some evidence that I crave this (mentha) for a very good reason:
Mint was originally used as a medicinal herb to treat stomach ache and chest pains, and it is commonly used in the form of tea as a home remedy to help alleviate stomach pain. During the Middle Ages, powdered mint leaves were used to whiten teeth. Mint tea is a strong diuretic. Mint also aids digestion, in a way that it breaks down the fats. In recent years, it has been often recommended for treating obesity. --Wikipedia
While we tend to best agree with the sources that best support our objectives, I do not think I am far wrong here. Claire surprised me today (8th) by agreeing to getting it, but WF was out. She thought of getting me "mint chip" but I would not have eaten that. Just not the same.
IF ANYONE CAN GET ME A PINT I'LL BE YOUR BFF OR SOMETHING ELSE YOU REALLY WANT!
Today was ok. Still tired and still difficulty eating. The labs are back and all the people who look at these things are happy, so I guess that means I get another round of chemo on the 10th.
Had a great time with Lori today. She was my driver to the labs. She is easy for me to be with because she laughs at everything, even when I am critical of her driving and her obsession with her car's "emotions". She is a great friend.
Gonna try and pick up the tele today because band practice is Sunday. Hopefully I'll have the energy soon be fore I wont have it again after the 10th.
This sucks.
NOTE: Sources report that BJMCC is on sale at Oliver's $3.69/pint.
Posted by Michael at 03:41 PM
February 22, 2010
Day 6 - Even Better
Weight 179
On the whole today is better. Today the tummy is not as unhappy. The bloated-ness is abating and I'm able to eat more. I'm posting my weight as a reminder that I need to keep it from going down too far (<160 is too far).
The USA hockey win was a bit of hyperbole comparing it to the Miracle on Ice, really no comparison. However there is something about underdogs that gets my attention. Not necessarily in my case, but close enough to think about.
In reference to that rambling prologue, I chatted with PJ today for a bit and that was nice. We talked a bit about Lance Armstrong and his struggle with cancer (not to mention L'Alpe d'Huez). The insight I found when chatting with PJ is that the battle for experience is not just somewhat about intention. It is written in a lot of places about what the power of positive thought can manifest and it was never more present for me than today when I stared at my lunch. I have to eat. There is no *not* doing it.
Claire made chicken, re-fried beans, and Spanish rice, foods that I have heartily enjoyed as recently as a month ago, indeed last night now that I remember (thanks Ger!). Today they were the hurdle. If I am allowed to suppose, in a very small way, I think I may know what Lance likely knows. There is real difficulty in the emotional work of making the decision to do what you intend, as well as real difficulty in the physical work involved in doing it. I do not mean to imply that the emotional work is *harder* than the physical; in my experience most of the time this has not been the case. It's just that today I knew that if I did not decide to eat, I would not and, for me, that has been the battle this week.
It makes me feel extremely fortunate that I have such a choice. There are many people who would love to have the same choices as myself. In more cases than we need to supply, to not exercise the choice is extreme foolishness, yet I can tell you in all honesty, sometimes that simple decision is absolutely the most difficult one to make.
Rads started up again today and it was annoying. I think the people down at the RPCC need sensitivity training. A nurse tonight taking my *vitals* took my temperature with an ear monitor that was barely in my ear. She then tried to shut the door without asking me if I wished it closed. When I first went there a rad therapist was delighted I was no longer working because it was "easier for her to schedule."
She did not ask if I had an emotional reaction to not working. If she had she may have discovered that I had to terminate with 11 clients telling them I could no longer be available to help them. Had the nurse known what it's like to be strapped down to a table with a claustrophobic mask over *her* head, she may have thought twice about shutting me into a small exam room. I know this is petty, but it is meaningful to me. I am putting in my best effort to arrive and go through this difficult experience. I would like to know that these people are doing the same. Talk to the Dr? Come to think of it Dr Lee (rad onco) has never had a mask made for him nor been strapped down like his patients. Hmmmmmmm.
Sorry. I know this is rambling and whiny. I am trying to make this meaningful for me and anyone interested in the journey, but my brain isn't working quite right. 38 days to end of treatment. Ugh.
Posted by Michael at 12:36 PM
February 21, 2010
Days 4 & 5 - A little better
The main problem right now is eating. I am definitely off my food. My tummy feels bloated most of the time but there's nary a thing in it. There's other stuff going on that's definitely TMI that is contributing, so I guess my body is just trying to figure things out.
Saturday Claire and FinghÃn and Julia and Paul and I all took a walk around Schollenberger Park (a local wetlands). It's 2 miles around and I did pretty good. I wanted to try it today, but it's rainy and I've little energy. The motivation is there, but man I am simply wrecked.
The great Caroline Hegarty came over Saturday night and cooked (no, really) an awesome swordfish and soup and some other stuff. Everyone is still alive and anyone needing evidence of her culinary maturation may now utilize our vote.
Rads continue on Monday and I doubt I'll have anything jolly to note about that. It's supposed to get worse in a few weeks so maybe posting will become a bit more of a chore. I hope not. I think it helps me a bit.
Today (Sunday) I had a decent brekkie and got up to have lunch just now and all that appealed was a strawberry popsicle (all natural, mind). I know I gotta keep the weight up, so maybe I'll start in ice cream next?
Right now I'm trying to keep up with paying bills and help out around the house a bit. Tyler is here this weekend helping too which is awesome.
Posted by Michael at 12:07 PM
February 19, 2010
Day 3 - Eat, Sleep, and Be Unwell
Ugh.
Cisplatin is the current chemo drug of choice for head and neck cancers. Cancer cells don't like it and neither do I. It works in combination with radiotherapy to "sensitize" the cancer cells into committing suicide through a process called apoptosis because these renegade bastards forgot how to do it by themselves.
The impact of the drug is mainly fatigue in my case. I do have some stomach issues, don't really feel like eating, but Claire keeps reminding me that the fight is about staying hydrated and fed, so I eat, sleep, and generally feel unwell.
The stuff singles out fast growing cells like epithelial cells (basically the the tube from stem to stern in mammals) and causes all kinds of nasty side effects. I hope my adventure is limited in that arena.
Xander was my ferry last night to the rads and as usual any time with Xander, sick or not, is fun even when you're about to be baked under the Death Star at the Rohnert Park Cancer Center. He gave me a gift which will help me on my return from the cave: "Lead Guitar Licks". I think he's trying to tell me something.
Ugh. I feel sick, but not sick. It's kind of like a malaise that just hangs on me like an old coat you never liked, that defines me in a way I do not appreciate nor, for the moment, do I have energy to change. The heaviness is the treatment I know and I will get through this. But it sucks mightily.
I'm thinking about D (love you kid), and J and all those on the Cancer Survivors Network who I commune with daily. Most are going through or have gone through what I'm going through. In reading their stories I get inspiration and perspective. This wont last long.
I know a lot of shit happened yesterday, but my memory is foggy. I know I had the hiccups again and they lasted for a couple of hours. Miraculously they ended just as I was strapped to the rad table which made me feel a bit better. At least the beams would be more on target than if I was bouncing around like an ant on a hot plate.
Anyhow, I very much appreciate the calls and best wishes. Please keep them coming and please remember Claire is working overtime trying to care for me and the kids and work and the house. She is a blessing to me and this family.
Posted by Michael at 03:24 PM
February 18, 2010
Day 2 - ER visit
TMI warning - if you find references to bodily fluid and trips to ER disturbing stop reading now.
Day 2 arrived in the form of chronic hiccups which are the result of the anti-emetic cocktail and reaction to the Cisplatin. The 3.5 hour hiccup episode ended me up in ER with a bit of blood in my vomit. Not a lot but enough to scare some people on the telephone (infusion nurse Jason, for example).
They kept me for a couple of hours and decided since there was no blood in the other end, I could take a 'pepsin' (an anti-acid for the stomach) and go home. I didn't go home though. Bill (rad therapist) called from radiation and asked if they could move up treatment to 6:30 so Noah, who arrived unexpectedly but to my great appreciation (as I was practicing Qi Gong in my private ER room) asked if he could do anything. He is now a veteran of trips to the Rohnert Park Cancer Center where I get the rads. Xander was to taxi tonight, but because the Dude was there, he was put on standby and will taxi me on day 3.
I did not take Ativan tonight because I was better prepared and especially after meeting J I knew I could get through it. What agonized me at first was that because of the ER visit and the change in the rad schedule I did not have time to get home to get music. Ugh!
Noah came through though. He had Mark McLay and the Dustdevils 'Love and Barbwire' cd and that got me through. Mark is an amazing talent and that he is a good friend is double the pleasure for me.
Noah eventually delivered me home after the 10 minute treatment and not without performing an amazing feat fit only those of thin bodies and youthful vigor can perform, crawling through the cat door because we were locked out (taking a house key along for the ER trip had not occurred to me). Claire and the kids arrived home shortly after and I slept well.
Updates may occur throughout the day ...
Posted by Michael at 09:38 AM
February 17, 2010
Day 1 - Never give up, never surrender
Day 1
I'll be updating as I recall events so these words may change a bit but today was day 1 of chemo and radiation. Chemo takes place at the Kaiser Hospital in Santa Rosa. The facility is just that. There is nothing warm and fuzzy except the staff who all seem to have pointy tattoos eerily sprouting from under purple garments, or sad hair trying desperately to look happy with unfortunately scented products.
It was uneventful to say the least. Yes it was scary, but this is a battle and it sucks, but I did have Claire and Noah to keep me company for most of it and that was fine as we tried to eat what the hospital had. Next time we'll bring a picnic.
Prior to starting I met a woman, Joyce, in the lobby who was doing day 6 of 12 treatments for breast cancer. Her voice was lovely. She had on a purplish flop hat not really hiding the baldness underneath, and was significantly near-sighted as her eyes shrink to dark beads behind her rimless eyeglasses.
I started 'the interview' which I am prone to do, a bit like my long-lost Father-In-Law Laurence McCarthy who could not go anywhere without striking up a conversation and then reporting back the salient details (such as the time we went golfing in Monte Rio and met a very large African American man and the two of them took to each other like brothers: "He said his name was Patrick, but he likes to be called Bernard. He said he's Irish, black Irish, hee hee hee").
In the interview with Joyce we discovered a glimpse into her life and work in the Peace Corps in Uganda in the 1970s (!) and then Ethiopia prior to the revolution. It made me think that people are so much more than their illness and that telling this story might be important. I'll follow up with her later.
She then spoke about what to expect and when I was called she said, "See you in there." We went in with Infusion nurse Cary who is as sweet as apple pie. She had a creepy tattoo inching from under her uniform and under questioning revealed that "everyone has them here so watch out". Lovely.
She started me on hydration because chemo fucks mightily with your kidneys and after an hour she brought in the Cisplatin (100 mg/m2). I recall Cary and nurse Jason being thrilled about the size of my skin, the meaning of which went over my head a bit. It had to do with the difficulty of dealing with "surplus adipose tissue" which Claire tells me means "you're not fat". Hmmmmm.
Noah, the Dude, had to leave after a bit, but as always his calm presence is a blessing and "I don't know about you but I take comfort in that. It's good knowin' he's out there. The Dude. Takin' 'er easy for all us sinners."
Toward the end of the Cisplatin bag there were several nurse shifts happening because they didn't want the bag to "suck air" and since it was on a pump, they had to reset it several times. One time a very nice but crusty-looking nurse, Cindy, waddled in to check the machine (that does go "ping", by the way). She was struggling with her girth to fiddle with the thing, but chanced a look over to me and, with an unexpected wink, said, "Chemo virgin, eh?" I took up the challenge. "Yes," I said, "and I'm getting fucked right now." She laughed and I added to the old joke, "And I'm not even getting kissed."
Chemo was then done. It was 2 p.m. I had a few hours before the beginning of radiation and I cannot recall what I did, which Claire is telling me is a side effect of what's happening to me, short-term memory dysfunction. I think we went to Walgreens and I had a conversation with Xander on the mobile phone. He called without leaving a message, so I called him back. I asked what he was up to and he said, "Putting up drywall at the school by myself. What are you up to?" "Oh," I replied, "not much, just got done with chemo." X laughed, "You pussy, get over here and help me!" It was perfect.
I declined and will see him tomorrow night as he'll be my taxi to day 2 of rads.
Radiation is freaky, strange, and just not natural. I have to wear a mask (photo coming) and get strapped down to a table on which an overhanging X-Ray Death Star swivels about my head invisibly zapping all the targeted cells, bad and good, to Kingdom Come. Noah swung by for a bit of dinner and ferried me up for my first treatment.
As these things go, the Rohnert Park Cancer Center has two Death Stars but I guess the Rebel Alliance wiped out one of them because when we got there we found that we were pushed back by an hour because Death Star #1 was out of commission. Where is Chewie when you need him?
Noah and I spent time chatting about the clinic where we both work (well, not me right now), and other opportunities we are exploring, The Big Lebowski, and the occasional acid flashback, when I turned to the other person in the waiting room with us, C.
C was a driver for J who is being treated for brain cancer. I initiated an interview and J's story was so compelling that when she finally came out I wanted to talk with her and gave her my number and offer of support. I could not help myself. She took the card and said she would call.
Soon rad therapist Vanny then collected me and brought me to the room. I had The Band cd Rock of Ages and dropped 2 Ativan so I was ready to be zapped. 20 minutes later we were done and I came home. I felt fine really, but Day 2 offered unexpected surprises and more excitement.
Posted by Michael at 11:18 AM
February 16, 2010
Day 0 - Prologue
PLEASE NOTE: The posts may be delayed by a day or two because the chemo has me knackered. For your calendars just know that treatment started on Ash Wednesday and will end on Good Friday. Make what you want of that. I'm expecting to have similar *metaphorical* results to the Jesus myth, in that I will rise from my Jefferson Street cave on that day free of disease.
Howdy folks. Here I start again on this blog that has been fairly bland and regurgitates often what we find at popurls or the beeb or elsewhere, but today we set sail on a new course where I am at the front lines of a battle. If you're interested please follow along. I cannot promise this will be easy, but know that it will help me in the process of dealing with this dangerous illness.
Ok, for the uninitiated here's what happened. On 18 December a lovely pathologist named Dr Britt Ljueng from UCSF did a fine needle aspiration (FNA) on an enlarged lymph gland just under my right ear in what is known as the jugular basin. As I lay there and Claire sat near by biting her nails up to her shoulders, Britt focused her microscope on the tissue she just removed and said, "Yes, I see squamous cells here."
What that means in other words is, "Mr Morris you have cancer." She went on to describe the type of cell as poorly differentiated and slow growing which as I learned somewhat later is not the best of news treatment and prognostic-wise. She wrote on her card 'preliminary impression - nasopharyngeal carcinoma'. What that means is that somewhere in my mucosa, possibly the nasopharynx, malignant cells had grown then metastasized to the right jugular lymph chain. There was not, and remains un-found, a primary tumor.
We left the building and I called Pat, my brother. He's a scientist and is great in these need-a-direct-and-unequivocal-opinion scenarios and he was perfect, is still perfect, and I am so grateful for him in my life. He's got his own cancer story to tell, so I wont divulge more than that here. Just say he was my first best friend forever and remains so.
Yet, it was in talking to Pat I started to descend to the bottom. This was real. I paced outside the deli at Divisidero and Bush across from the UCSF Med Center and wept into my mobile phone. I recall saying, "Pat, I'm kinda scared," and he replied, "I know." That was the beginning of my new life.
We then started the process of what to do and treatment options. We met with a wonderful surgeon at Kaiser Oakland, Dr Deepak Gurushanthiaia who, if he was not a worldly man and of deep erudition, you would think he was a 12-year-old Dude. It turns out I was in the best hands. The Oakland facility is a teaching hospital, so with his team of Residents there to train with the best, on January 15 I underwent a 5.5 hour procedure to 1) remove the gross disease from my neck, and 2) to do random biopsies of my mucosa to try and find the primary tumor.
Objective 1 went as well as can be. They removed about 50 nodes from my neck and 7 had disease. The good news is that there was no adhesion to any other structure and that there was focal extracapsular extension in a couple. This microscopic outgrowth of tumor from the lymph capsule meant I was headed for chemo and radiation.
Objective 2 was a failure. Either the primary is microscopic or is gone. Either way radiation and chemo are what will be done. The problem with not finding the primary is that the target volume must increase and my entire mucosa will get, in the parlance of our times, "cooked". This will suck. A lot.
But as our hero in Galaxy Quest says "Never give up, never surrender"! That is now our motto.
Posted by Michael at 03:18 PM