#35 A Fig Newton For Lunch? ...Anyone?

A Fig Newton, as in one, was what I had for lunch the other day.  We keep a box of those two to a pack Newtons in the car; emergency food.  They are a bit bigger than the regular size cookies, but still.  I miss being able to eat, or should I say my soul misses being able to enjoy lots of tasty things I can make.  I still make 'em but I'm forced into a premature reign pull.  Drats, wrapped in foil again.  When it comes down to it my body is just a four stage food processor, in-digest-glean energy-out, but when there's a problem with any of those steps, well then it's a problem that needs to be dealt with and the intake stage is where it starts.  Living with cancer is still better than the alternative.  All right, that's my moan this time.

I had two more medical Qigong sessions with Vadim, and have been working on the exercises he gave me diligently. He also added two more exercises.  Some of the more meditative disciplines are difficult especially because I had to go back on the Lasix cuz my legs and feet are getting a little Pillsbury, and the Lasix makes me Lunchable (I should get some sorta subsidy for product placement) and I end up tipping a bit.  Tipping over that is.  But nonetheless I refocus and am learning how to cleanse and nourish my Qi, and distribute it to where there is blockage.  The exercises are difficult and I don't know yet if I'm making any progress.  What I do know is that when Vadim does the actual medical qigong treatment it's been getting more intense.

At Sunday's session, with my eyes closed, going from deeply relaxed states of consciousness to semi-hallucinatory sleepless dreams, I discernibly felt, as clear as if I were holding it in my hand, the tumor, my tumor, rise up and hover just under the skin.  Then it suddenly dropped, like a swiftly severed Dragon's head, black steamy smoke spouting.  I wanted to open my eyes and see where Vadim was but I couldn't.  I don't know how long he worked on me, but my wife said about forty-five minutes.  When it was over I opened my eyes but couldn't really move, my mind kept shuffling my thoughts around and around like a Vegas blackjack dealer with serious OCD.

I was dizzy and unsteady but made it off the table and in to the chair.  When I was finally able to talk about the tumor thing with my wife and Vadim I was in tears.  I can still feel the tumor in there but something has changed; in my head and with the tumor, only time and an MRI will tell what really happened.  I am seeing my oncologist on the fifteenth, preceded by blood-work, so maybe there will be something there.  To me this is progress, a positive result of the path chosen, and it rewards me with the kind of energy I need to devote as much I can to the exercises.

The past week was good, aside from the everyday cancer reminders, nothing drastic or overwhelming.  Mumsy came for a couple of days and surprised me with an early birthday gift. It is a magnificent, brushed stainless steel, two banger Belgian waffle maker!  The feature attraction of this particular model is the side handle which enables one to flip both waffles, in the maker, over after the batter goes in. Which any true waffle aficionado knows will evenly distribute the batter creating a nice tall and even Belgian waffle.  Nice going old gal, you know your son!

The weekend with my wife was great, as usual, kicked off Saturday with acupuncture by Christy for the both of us, some shopping, cooking, relaxing and a beautiful trail walk on Sunday.  I kinda spaced out doing the blog on Sunday, it's begun to feel somewhat like a self-imposed chore.  So I'm just gonna blog when I want.  I'll try to do it once a week minimum and if something momentous happens, why I'll just blog it on out right then and there!

Sokie-Dokie?

#34 The Rough Going and Medical Qi Gong

This lingering fatigue is gripping and the time flew by today with disease related stuff we had to do; so maybe I'll write some more later or definitely by tomorrow eve...

Well, yeah...didn't quiet make it Monday, but here it is Tuesday afternoon and let's see how far I can get before my brain starts drooling puddles of existence. Which lately has been the main problem, largely due to the meds prescribed for edema in my feet and legs, coupled with the blood pressure meds I was already on, dropped my numbers to the point of sleeping away hours of time throughout the day. Adjustments were made but no improvement, and when all was said and done, just my feet were affected, the legs were pretty much the same. If it gets really bad maybe I'll go back on, but for now it's bearable, and I can still walk in the mornings. I could fill pages and pages bemoaning the woe of late; but to what avail? And as infrequent as it may be I've taken to announcing, out loud, when I feel good rather than being my own harbinger of misery.

Ha and I had not heard of medical qigong until we read Suzanne Friedmans story about her personal cancer experience. Then sometime later our acupuncturist, Christy, brought up Vadim's name and this past Sunday I had my first session with him. Vadim Derevyanko http://chinesemedicinebodyworks.com/index.html . In my fifty-six years of breathing air I have never experienced anything remotely like what I did a few days ago. I don't want, at this point, to get into any assessments, reviews, or opinions at least until I have a better understanding of it, which will likely take a few more sessions. Let me just say that I believe Vadim to be a true master, and that now, without a doubt in my mind, that medical qigong, along with acupuncture, and Chinese herbs, hold the key to my recovery. After the healing part of the session, Vadim gave me three exercises to do at home everyday. So, this is not like being worked on, but more like taking an active part in my own cure, other than just "hanging in there."

OK, there's a lot more I could say about the last two weeks, and maybe I'll add on later, but for now this will have to do.

#33 When It's Sleepy Time Out West

Up north, down south, out west, and back east. Sleepyawn time REMgone down out for the count little Susie take me down.
I just can't seem to keep my eyes open so this weeks blog is hereby postponed. I will catch you all up in June, my birthday month.

Until then...

#32 If It's Not Working-Fix It

Didn't quite get to posting yesterday but soon will. Hopefully within the next day or two.

And I'm back, Tuesday the 24th of May, 5am.

Sad to say, as much as I like and respect Dr. Kunin, I must give his regime of vitamins, infusions, etc... the boot. My main reason for this being the blood test I had last week, after over three months of being Kuninized, were my worst numbers ever. Plus the weekly trek to SF and back had become very draining. Kunin's method had ceased making me feel better until I stopped. Similar to the Burzynski protocol, these guys have some tried and true success rates, but they fall way short when it comes to liver cancer. Like everyone else. Moving on.

In retrospect the first course of action we should have researched is acupuncture COMBINED with the Chinese herb and fungi tinctures. But at that time I didn't have the proper acupuncturist nor mindset. Apparently neither did my first two needlers as both never mentioned herbs. And along comes Christy.  When the student is ready...and all that jazz. I started on the tincture last week, gradually increasing to the full dose as of Sunday the 22nd. I've heard many times how bad these herbs can smell and taste, and maybe some do, but I would describe the taste as potent, in fact, very potent. The smell, because one has to simmer off the alcohol, is very mild and it only takes eight minutes to complete. I make enough just for the day. Along with the herbal and fungi tincture, she's got me on Cordyceps. 

There have been no negative effects so far and I do feel a bit better since I started the Mahoney method. Conversely of both Burzynski's protocol, and Kunin's composite, the Christy combo does NOT feel like it's making my liver work any harder. That's a good thing.


The tumor pain is not so bad this past week and I have been able to steer clear of the Jungle Juice. Mostly, how I feel lately has been uncomfortable rather than painful, largely due to the water retention (edema) in my belly, my feet, and legs, in tandem with the ever present constipation blues. Dr. Clark (Kaiser oncologist) put me on Lasix and Spironolactone, two diuretics. We shall see...


I'd really like to be able to be one of those people who are grateful for each day, especially under the circumstances, being thankful should come easy. Instead I just consider myself a lucky stiff; and I will settle for that.

#31 Tomorrow…

This has been one of those weeks where every day, up until yesterday, the best I could do was hope for tomorrow and that I would feel better, especially at night. But the next day was more or less the same. At least today I don’t feel like chucking myself out of the window. I’ll take that as progress.

I guess the real frustrating stuff besides my pain level, for which I had to resort to the jungle juice more than a few times, is the malaise and the falling asleep. Today the pain level is considerably better, but since sitting down to write the blog (just up from a nap) I’ve fallen asleep about five times, and it’s taken me forty-two minutes to get this far! Gosh, I bore myself to sleep.

                                

The numbers, the numbers that tell me about my well and unwell being. They are the dictating digits of my demeanor, the crap count, and finally the fettle figures. I’m talking about my blood-work. Neither well nor fine fettle does this data decry. And Ha and I are pissed-off! It was yet another costly block of time, with my liver working overtime on processing all the supplements, only to have the worst set of numbers yet. When Dr. Kunin said I’d feel better he didn’t say for how long, but I know now, almost three months. We are done with Kunin. In all fairness the first two months were good. So now what?

I mentioned the Chinese herbal tinctures from Christy last week; well the first batch has been ordered and will arrive this week. We figure it’s time to break away from all this cutting edge, experimental and contemporary methods and go with something that’s been around for thousands of years and has a pretty good track record. Besides there ain’t much else on the horizon as far as this stuff goes. Not to say it is a last resort, I’m just surprised it’s taken me this long to try something that I’ve believed in (acupuncture, Qi Gong) for so long.

Write a sentence, take a Siesta, sentence, Siesta. No pun intended but I’m getting tired of all this dozing. I’m just gonna put in some pictures of my garden on the deck. Maybe I’ll write some more later or during the week.

A Blue Wildflower

Brussels & Radishes

Planted 3 Cantaloupe seeds & 3 Sprouted!

Tomato Patch

Succulent Corner

#30 The Night Was Sultry

That’s where I’m at now. After staring at a blank screen for a while, falling asleep twice, watching a couple of clips from “Throw Momma From The Train” on Youtube, making some tea (also in the beginning clip of the movie) and, my favorite procrastinatory, staring out the window and watching the Carquinez Straits roll choppily on by (yes, that’s a word, unlike the one further back in the sentence.)  Ahh well with the way I feel I can’t blame my muse for taking a midnight flight out of Shitsville, or should I say the County of Constipation.

I never know until I get in there and the meat hits the seat.  I do bring the Jungle Juice with me nonetheless, because the most painful of times have been in that little room, and I have thought, more than once, don’t let me die on the crapper.  There are a number of ways shit happens, I’ll leave that there, but I haven’t had a normal, pain free, bowel movement since before my diagnosis.  OK, enough of that shit.

Mumsy’s birthday was a blast!  She brought Grandpa Ray with her, one of our favorites of Mum’s friends.  He’s been asking her to marry him for a long time now, but at seventy-eight, being “in love” still matters to her.  But Ha and I love Ray and will always root for him; at the same time we both want Mom to be as happy as she can be.  Raymundo Cassani has some truly great stories that we love listening to; he’s quite gestural in the telling of them, animated even, but often times he doesn’t have his hearing aid volume up enough and let’s just say in those times they can be a bit off topic.  But we find that kind of funny in a charming way.   Ray's Birthday was just a few days away so we got him a hat. For Mum’s birthday Ray bought her a very nice stainless steel microwave, so Ha and I got her all the “microwave safe” cooking accoutrements we could find.  Everything from a rice maker to an egg poacher…she was happy.  Then I made a fancy salad with pears and radicchio, candied nuts, and some crumbly cheese.  The main course?  Pizza pie!  Homemade dough and sauce with spicy sausage.  Desert was chocolate on chocolate cake with whipped cream frosting, Mumsy’s 78^th, which would have said 79^th but she corrected me in an email a couple of days before.  Nice night!

Mum spent the night and the next day met us at the VA for my appointments with my primary care, Dr. Drye, and oncologist, Dr. Katie Kelly. I had my blood-work done earlier so Dr. Drye had already looked at those numbers, which were not so hot (bilirubin@11) but quite representative of the way I had been feeling as of late.  I’m learning that she, Dr. Drye, tends to be a bit cut and dry.  No harm intended but we felt a bit worse when we left her office than when we entered.  On the other end of the spectrum is Dr. Kelley, who knows my status better than anyone yet she was quite positive about the blood test numbers.  Asking us how all the alternative treatments were going and was I still walking every day, yes.  We left feeling renewed and like we had a partner who would and had gladly fought for me as far as she could in the world of Western medicine.  Kudos Katie!

I have started the Artemisinin and will start the Chinese herbs next week, which we are intuitively psyched about. Hopefully the Artemisinin won’t negatively affect my liver, and I’ll be able to continue with it and add the Chinese herbs.  That’s why I started the pills a week before, so if there are any bad side effects I’ll know exactly what it’s from.  The Chinese herbs will come in tincture form and are pretty costly, especially when I gradually get to the maximum doses.  It runs about $1,200 bucks a month, so keep those donations coming.  We are truly grateful for all the help we’ve gotten so far.

Acupuncture was pretty intense again this week.  Christy is absolutely amazing, and the fact that I sleep quite a bit after the sessions is good because, to me, it means something is being or trying to be healed and I need to rest so that can happen.

OK for now.

#29 Back on the Blog

I’m rewired sans malware/virus and grateful to have The tool back again.  I’d be more thankful if I didn’t have to run Vista as the OS, and even happier if I could just switch to Mac, but it’s OK for now.  All my programs and peripherals are back, I didn’t really lose anything important, like my writing, music, biz files, etc…but all my bookmarks are gone, oh well.  Onward.

On the up-side Ha survived the first round of cuts at work, whew!  So for the time being we’re ok.  We are unsure what the future holds with her city job, and only time will tell.  And our deck-garden is coming along.  I decided to keep everything upstairs this year rather than deal with rodentia, dog feces, and rickety wooden stairs.  So far we’ve got green onions, radishes, cilantro, cantaloupe, San Marzano tomatoes, and Brussels sprouts, the most delicious of the gemmifera group.  August should be a tasty month!

This Tuesday is Mumsy’s birthday and if I have the energy she wants to spend a couple of days with us.  Spending the night Tuesday, complete with Chinese dinner, and going with us to my oncologist, Dr. Katie, on Wednesday.  I’m happy, but what a thing to do on your 79^th birthday …only a mother.

I don’t much feel like writing about the down side because the past couple of weeks, with this last week being worse, have been real crappy.  Poor sleep, fatigue, constipation, malaise, fear, gastro-intestinal pain, tumor pain, blog, blog, blog.  On and on I could go, but having to suffer through it is quite enough, I don’t need to have a report at hand too.  If I have more to say I'll say it here, on the blog, if I feel up to it, not in conversation.  In fact, unless it’s my doctor or wife there’s absolutely no reason to get into how I’m feeling.  “Not so good” is a complete answer, and any further questioning, discussion, or explanation only serves to drive me deeper into depression and anger.

Along with Dr. Kunin’s new regime of Artemisinin, I will be starting on some Chinese herbs from my acupuncturist, Christy, which Ha and I are very excited about.  More to come about that next week, along with new blood-work from Dr. Katie at the VA, and her report on my current state.

Malware es Muy Malo

About a week and a half ago I fell victim to an especially odious malware virus. I spent twelve hours total (two days) trying to remove it, which I've done in the past, but nothing worked. I knew I could reformat the hard drive but then it'd be another few days getting my laptop back the way it was. Long story edited, I took it in to a great little place in San Pablo called Reliatech-No Fix, No Fee is their motto. No way around a reformat. Three days later and $110.00 well spent and I'm up and running. Sadly though my Dell (never again-next time it'll be a Mac) still won't recognize my external 1 Terrabyte of hard drive with all my back-ups, music, and movies on it. I thought that was just because of the malware, so back it goes today, Monday, April 25th. Hopefully by this coming Sunday I'll be able to write a proper blog, but right now, siento MUY frustrado! If you see anything like this pic come up on your machine for god's sake don't take it to the Geek Squad. "Yelp" a nice smaller computer repair place in your barrio and pray they have experience with this particular viral manure. The maleware's trick is fear based. Exactly like a Mafia movie, pay for protection. Then they have these fake windows and toolbar pop-ups that tell you:

Fix Disk
Windows Recovery Diagnostics will scan the system to identify performance problems.
Start or Cancel

Critical Error!
Damaged hard drive clusters detected. Private data is at risk.

Critical Error
Hard Drive not found. Missing hard drive.

Critical Error
RAM memory usage is critically high. RAM memory failure.

Critical Error
Windows can’t find hard disk space. Hard drive error

So, DO NOT buy it, it is in itself a virus only, not a tool.

#28 No Worries? My Brooklyn Behind!

The last week has been good in many ways. On Tuesday I got to spend time with Mumsy, which I hadn’t done in a while, and it was real nice. The only drawback was that we were at the VA clinic in SF, hurrying up and waiting, and waiting some more, but everything turned out OK.

The first appt. was with Radiology because it felt like the docs had left a part of a tube from the port I used to have in my neck! Turns out it was just some scar tissue that had developed around a bend in the tube. No metal, no plastic...still if I run my fingers across it I can feel it.

The second appt. was with Hepatology, a very long wait, and no new news. But just sitting around and waiting gave my mom and I some good time. We both have a lot of stuff on our plates right now and just hanging out together seems to have a positive effect on our attitudes. 

Passover is this coming week and Ha and I are hosting a very low key Seder on Saturday, (I know, a few days early) with mom, Marvin, and us. Mom will bring the main meat dish, and I’ll do the sides and apps. Dessert? Who knows?

On the home front just about everything is good. Ha and I are a little bit up in the air about her job. A couple of weeks ago, the city powers that be decided they had to cut 40% off labor costs across the board. So it’s not just her department, everyone is affected. They will make the cuts known at the beginning of May. Needles and pins, but she is not taking this sitting down, she’s worked too hard not to insure that her future is secure. So there!

I would have to say one of the best things that happened this week is Lisa, our social worker, wangled and finagled a very nice portable air-conditioner for us. Ever since the chemo treatments the Sun and any room over seventy degrees makes me ill, like my skin is burning, I run a fever and have zero energy. I was dreading the Summer so Kudos Lisa!! The way we’re going to be reimbursed is with a $350.00 Safeway gift card. That’s a good thing because ever since Safeway started in with their O organics line we’ve shopped there quite a bit. So, it will be used. We usually stop there on Saturday, acupuncture, then lunch, then shopping. My acupuncturist is in Oakland, so we can start with Whole Foods, then Tokyo Fish Market, Trader Joe’s and/or Safeway, then home.

Whole Foods Oakland had a little surprise for me this last time. Every time we go there we usually hear “No worries” three or four times as an answer to something that no one in their right mind would worry about. And besides “no worries” is an implied cop-out. But whatever (that’s my word...WHATever) this time it’s besides the point, except for the fact that the “no worries” people are usually strung taught like a new violin and ready to pop unwound at the drop of any real worry.

So, at the Whole Foods Oakland I got a chance to get in touch with my inner Brooklyn. We’re done shopping and headed for the ten items or less cashier when this tall, blonde, wiry, looking, maybe twenty-eight or so guy carrying a rotisserie chicken and looking the in the opposite direction in which he is walking steps out in front of our cart. I was about a foot away so I did this sound that my wife and I use when we can’t find each other in a store, and we also use it with our cats if they are being bad boys. It’s kind of a snaky noise that sounds like IT’S without the I first. So this unaware, no worries looking kind of guy got a loud double TS, TS. He looks down at me and as smug as only someone from England can sound asks, “Is that how you communicate man?” I said “ Yeah it is.” And tried to keep going, then louder and chest puffier he mistakenly tells me, “You need to learn some manners.” So I motion to him with curling the four fingers on my outstretched right hand to come here and I say, “Why don’t you teach me some.” At that point he just smirks and turns to walk away...so I let him. It felt good. My wife wasn’t thrilled but she could see how much I liked it. What a woman, huh? Albeit, that situation never would have culminated in such a manner in Bensonhurst, but Whole Foods Oakland; No worries!

The rest of the week was all right. The pain is still a problem especially when I eat even a few ounces too much food. I’ve really slowed down and have been trying to eat slowly and realize when I’m just full and stop there. It doesn’t take a lot and I can spread my meals over the entire day.

 

This coming Tuesday I have an appointment with a cardiologist at the VA and Cousin Craig is driving. It will be fun.

#27 One Year Since and Six Months Past

On March 31^st it had been one year since my diagnosis, and six months past my prognosis... and the clock goes tic-tock Doc, tic-tock.  Part of me wants to march in to that bastard’s office and make some trouble in a publicly humiliating sort of way, but then again, people like him are not worth my time.  Time; every second a precious commodity, another opportunity to love and laugh and now inhale the first fragrances of a new Spring.  A different Spring than the ones before.  The small blossoms that will become French Plums in our backyard, and the tiny buds which are already flowering into the roses out front. I’ll snip our first vase-full tomorrow.

  Along with all the beauty comes the heat, which used to be good with me, but ever since my chemo treatments it is unbearable.  The sun on any exposed skin feels like it’s burning to a blister, and itches for days after, and when the house heats up it robs me of all my energy, it feels like I’m coming down with the flu, and I can only sleep for an hour at a time constantly changing my shirt and shorts because they’re drenched from sweat. Ha and I are trying to get the money for a portable air conditioner as conventional AC’s won’t work in our slide to the side windows.  We have Lisa, our social worker from the hospice team working on that.

Ahh yes, hospice.  New info hmmm?  Well, most people are unaware what hospice is really all about.  It can be as much as seven days a week high maintenance care and drug administration— to what I’m on, which is a once a week, forty-five minute check in visit, from my nurse, Patty.  They are also there for people, like me, who are done going to the emergency room when something scary happens.  They are available 24-7.  My oncologist, Dr. Katie Kelley, recommended that we check it out sooner rather than later because this way we won’t have a bunch of strangers storming the house if I ever need the high maintenance hospice care. 

Physically and mentally I’m doing quite a bit better than I was the week before last.  That was a rough go and takes a while to recuperate from.  I don’t think I’m fully recuperated yet because the pain is still a couple of points up...patience.  Last Saturday’s acupuncture session was extremely powerful and helpful.  Christy said it may make me kinda sleepy because she was working on a number of pain meridians.  That was no lie, it felt like all I did was sleep for two days! But it did put me on the mend, and until those hot days I was doing fairly well.  But yesterday and today was good.  Ha and I didn’t really do anything special other than spend time together and that is enough.

#26 Abdominal Alien

The last week has been an absolute crap struggle. Much like back in January except no blood sugar drops, no itching, or splitting fingertips. Although there's been a considerable amount of pain, lethargy, fear, and loss of appetite. I may write some more throughout the week and I may not. It is taking all my energy to not let this monster get the best of me. It is a torturous alien bastard scumfuck.

#25 What We Think About When We Think About Death

I’m not dead yet so I have the luxurious curse of thinking about it way more than I’d like to. Fantasizing things I can and cannot do. Everyday upon arising the thought of still being alive is present, then at 6am my iPhone alarm sounds; crickets chirping and the words You Lucky Bastardo remind me that I most certainly am one lucky bastardo. And no matter how physically or spiritually painful things get this day I am still here. I vowed a while back that I would accept what is as it comes, and that eventually it would subside, and if it didn’t I would find a way to continue on as bravely as possible. My vow is mine alone, but I do have a deep understanding, and compassion for those who decide not to whether the storm because life has become something else that they cannot call living. A time like that may come for me but it is not yet here. I think about what I’ll do, if able.

This past week, one evening much like many before, my wife and I were getting ready to watch a DVD. I went to the TV, bent over to pick up the movie, and Mickey Mantle hit me right in the liver with a spiked baseball bat—it might have been Barry Bonds or Mark McGwire for all I know about baseball. I said “OHHH SHIT” and lifted up my shirt and put my hand over the area and looked at my wife. The both of us silent. We don’t need words anymore when these times come. I went to the cabinet and did three milliliters of jungle juice. Usually the taste of that vile swill is the first thing to move my mind from the pain. Not this time. I had to hold it under my tongue and swirl it around my mouth like some masochistic sommelier, and every thirty or so seconds let a bit trickle down my throat.  Sublingual activation.  I sat on the couch and held my wife because I thought my tumor or liver had ruptured and I would internally bleed out.  After a half an hour the pain had gone down to an eight, so another three mils would do the trick.  Adding to that a half a Xanax to stop my head and in about an hour the pain was a manageable four.

I’ve had something like this happen before only not quite this sudden so I had the chance to preemptively medicate and it never got this painful.  None of my oncologists, doctors, etc...knew exactly what it was, although one of them did mention a rupture in the tumor.  If I was bleeding internally, last time, or this time, I would know it.  My stools would be black but the color is still normal.  At Kaiser (that place will be the death of me yet) they misdiagnosed it as gall stones and were set to do some sort of invasive surgery when I checked out “against doctors orders,” signed their forms, and went home.  One usually tries to reason things like this out which is a total waste of time, suffice it to say it happened because I have cancer and fucked up shit happens...En Fin.

So yeah, the death thing.  It sucks because for the last twenty or so years the number eighty-three has always been in my head for the age I was gonna die; but I don’t know, nobody does, that still might happen.  I’ve always looked forward to getting older.  Even from a very young age, like at seven I couldn’t wait to be a teenager, when I got there I wanted to be twenty-one.  Then it subsided for a while and I was having too much fun...but now, well shit there ain’t nothing I want more.

Even if we both live until we’re eighty-three I’ll never have enough time with my wife.  If she were not in my life I’d have a much easier time with all this.  But I just have to picture her in my mind’s eye, or glance at her while I’m driving her to work and I could sob tears big enough to drown in.  And if I do die sooner rather than later I can’t bare the fact of her being alone, but I won’t have to (probably) because I’ll be the dead one, and she’ll have that internal sadness and that is the most saddest thing I can let in my head.

For myself, I’m curious about the afterlife if for no other reason than to find out if this is it or is there more.  I guess everyone wants to believe in some sort of afterplace-reward, and it’s the same ones who want there to be the afterplace-punishment.  I’m sure that if there is a hell that the ones who will be going there don’t believe in it.  I think if people find comfort or enlightenment in things of that nature then it is good. I never have.  I’m fairly certain, like most things that go on in my head, when I’m thinking about situational outcomes that it always turns out differently than I thought it would.  It doesn’t make sense that heaven and hell would be as complex as life, if so then where did RIP come from?

I have to stop now.

Thanks to Raymond Carver for the ideal title.  If you haven’t read “What We Talk About When We Talk About Love” you should, it’s a magnificent collection of short stories you won’t soon forget.  In fact I think I’ll read it again, if I have time...

#24 An MRI, a CCD, and a PRS

I made up the last two acronyms.  An MRI is magnetic resonance imaging, and it’s such a big-ass magnet that they don’t allow any metal on your person...belts, rings, pacemakers, etc. However, they don't tell you about credit cards in wallets.  I should have known, common sense and all, but I had taken a Xanax because the dye that they shoot you with freaks me out, and besides, the Xanax on top of my usual opiates, and common sense becomes a rare occurrence.  So I suffered CCD—credit card destruction.  For a while I couldn’t figure out what was wrong with ALL my cards because Ha and I have the same cards and hers were working fine, then I remembered, the MRI tech, whether he was in a hurry or that’s his MO, did not have me strip down to skivvies and don the always fashionable Dufy blue VA Hospital gown.  The replacement cards are on the way thanks to my wonderful wife.

That brings us to PRS.  Port removal surgery, and I must say I am quite happy the day finally got here and within ten days I’ll be back to my usual yoga routine.  That thing made me feel like Frankenstein, this silver dollar sized disc barely below the skin three inches down from my neck on the right hand side with a tube that snaked up my neck to an artery.  It did make my blood-tests easier because I’m a real hard hit when it comes to the veins, just like dear old mum.  Before and after the port I usually leave the phlebotomist’s cave all black and blue, and if they haven’t hit it by the third try I request someone else.  So yeah, having the PRS is more pro than con for me. 

With the Kunin Vitafusion on Tuesday in SF, then the MRI Wednesday, and the PRS Thursday, both in SF, and the second appointment with my new acupuncturist on Saturday, you could say I’ve had a busy week.  Thursday and Saturday my wife went with me and that’s always good.  On Tuesday my mom took the bus up to SF with me, Al, my sib, picked us up and drove us to the doc’s place.  Afterwards we went to Miller’s East Coast Delicatessen, which specializes in all that Jewish soul food from our childhood’s.  Knishes, Kishka, Chopped Liver, etc...it was great being with my family and reminiscing.   To us Jews food is so much more than sustenance. 

Nana Beatrice Austin

I remember my dad’s mom, Nana Bea, from whom I inherited my talent and passion for food.  She would always stand behind her husband, Zaide Sam, at the beginning of our family meals and holiday dinners, for a few seconds, just long enough to scan the food and her family smiling and eating and loving every bite.  I’m sure this was her goal in life.  That’s what I call success.

My Aunt Rhoda (my mom’s sister) and Uncle Stanley are in from Boston to spend time with their new grandson, Wyatt.  Ha and I are really excited too because we haven’t seen them in a while.  Rhoda and I talk just about every week, and Stan is a doctor, he's been extremely helpful when any problems come up for me.  They’re an important part of my support team and I’m very grateful for that.

Ha and I are really liking the new acupuncturist. She has me talk about the weeks problems, physical and otherwise, and I can see her charting the meridian course for the day based on what I’m saying.  Then it’s up on the table, tongue check, pulses check, lastly the needles, and all the while she’s doing these things she’s explaining what’s changed since last week and how it all fits together.  It’s like a lesson in Chinese medicine.  Great stuff. 

#23 Baby Wyatt - Wonder of Wonders

Sir Wyatt the Red...head

Good lord the sweet holiness emanating from this baby, you could have pushed me off a pier with a pussycat whisker.  It was a truly unitive experience seeing Sharon cradling Wyatt and sitting in a big easy-chair, looking out at the San Francisco bay, a picture of proud motherhood.  Zachery, Wyatt’s big brother was napping quietly in the other room, but the ease of Sharon’s demeanor, and the confidence with which she handled Wyatt, you automatically knew she had done this before and clearly loved where she was in her life right now.  The father, my cousin Craig, had the same glowing sphere of light and beauty around him; anticipating mother and child’s every need, a smile for miles on his face.  Two boys.  What father wouldn’t be floating on clouds of ambrosia?

Ha and I just stood there staring for a while.  I can’t recall how long it was before Sharon asked us if we wanted to hold him.  I didn’t trust myself because of the amount of opiates in my system but Ha got pretty excited.  The handoff... and I finally remembered to pull out the camera.  Ha and I had decided not to have kids but we really do enjoy them when they become a part of our family.  I love when my sib Al sends me pictures of Amir’s latest escapades and outfits, not to mention his soccer addiction of late.  Ha was thoroughly enjoying Wyatt and talking to him, not baby-talk either, like many people do, but the words she spoke to him were very musical.  I should have brought the video camera.

Our gift to Wyatt was a young Mandaquat tree.  I know—I’ve never heard of it either.  Apparently it’s a crossbreed of, you guessed it, Mandarin Orange and Kumquat.  Great idea, and like a Kumquat you eat the peel as well as the flesh.  Ha and I wracked our brains for a gift idea that was unique.  So we get there, with the tree, and Craig tells us that when Zachery was born Sharon’s mom bought him a lemon tree.  So much for originality.  At least we’re in good company, great minds and all that.  I still think it’s a stellar idea and that it should become a family tradition!  A boom of thunder and crack of lightning illuminate the sky - I Have Spoken.  Besides, I think Ha and I will be buying another tree sooner rather than later.  I mean two boys are wonderful, and will be quite the handful growing up, being so close in age and all, but two boys and a girl just sounds so nice.  Far be it from a cousin or uncle to try and have any influence on any young couple in the family, or for that fact, Al?  A boy and a girl would be nice.  I know my timing is a little off right now, but just saying...

Ok, now that the good news is out of the way we can get back to the gloom and doom of cancer...or not.  Actually it was a decent week, besides this diverticulitis that doesn’t seem to want to let me be, it’s been fairly uneventful.  I did have an appointment with Dr. Clark, who seemed to be thrilled that my numbers are heading in the opposite direction, nice guy actually.  Also I went to a new acupuncturist, not because I was unhappy with Dr. Rossman, but I found (through Suzanne Friedman) someone much closer.  Christy Mahoney, I’ve had one appointment so far and she’s very confident, extremely knowledgeable in, not only acupuncture, but medical qigong as well.  I also really like that she pointed out some Qi meridians that I can work at home.  I dislike having to lose a team member, but my transportation issues being what they are, it’s a decision I had to make.

 To preview next week I’m having an MRI on Wednesday, and my port (that uncomfortable chunk of plastic in my chest) removed Thursday.  So for next week’s blog I should have a couple of stories.  In closing I must mention that Ha and my weekends together are extremely wonderful.  We’re enjoying each other’s company, laughing and hugging more, heck today we even cooked together!  It’s just a real gift to be able to let go of the cancer and focus on what’s in front of us.

#22 Carrying The Load

This weeks entry will be a bit on the long side so I figured I'd start it out with some humor, albeit dark as a chocolate jungle, but humor just the same.

I know, the timing is just impeccable. Both Ha and I had a really good laugh.  Especially because they've taken the time and consideration to fill it out halfway for me.  Off what list or database do you suppose they gleaned my stats?  Something like "For those of you about to die...I give you FIRE!"  What was that old song from Arthur Brown? 

Included was literature on their services, and on the very last page, down at the bottom, in what looks like a size 6 font, it says, "Please accept our apologies if this letter has reached you at a time of serious illness or death in your family."  Why would they apologize for that?  It seems like that would be the best time to WIN a personally consumptive BBQ.  Heck, that's just good business.  Silver lining for the loved ones and all. May he rest in urn or scattered ashes.

I’ve been trying real hard to keep the lamp light bright and shining, but I dunno, this week has been a bit difficult at times.  Luz on, luz off, as Zachery would say.  A sudden case of acute diverticulitis and the accompanying pain had me thinking, on at least three occasions, that it was time to greet my Jesus.  Holy cow this shit can hurt...and it can hurt right through the huge doses of opiates I’m already taking.  Hurt to the point of needing “Jungle Juice” at regular intervals.  On Tuesday I cancelled my Vitafusion at Dr. Kunin’s and tried to sleep most of the day. 

Blah, blah, blah, pain and more pain, blah, blah, a two day scrambled egg, cottage cheese and Popsicle fast.  I'm just skipping most of the wailing namby-pamby bullshit.  It gets so tiring to hear myself complain.  I do believe I’m on the mend now and will not have to visit the evil empire that is Kaiser.

I really do think terminal cancer is quite enough to get through without having to deal with such a lesser strata of malady.  But then again, since day one, the main source of problems and pain has been abdominal.  For a man whose passion, art and bane was food, and has spent his entire career in the kitchen being fulfilled and filled full—do you think there’s a message here?  I’ve battled overeating (and over-indulgent behaviors) for most of my life.  Maybe it’s time to go a little deeper into that symptom?  Just what I need, more self-inflicted stress.

Anyway, Wednesday Ha and I went to see Dr. Kelley at the VA for my monthly check.  We also met with some people from Palliative Care unit which was supposed to be the precursor to the VA’s hospice program, but the doctor, Barbara Drye, didn’t think I was ready.  My understanding from the info I got through Dr. Kelley was that we would meet with these hospice people, find one with whom we felt a level of comfortability, and then IF the time came we would know each other somewhat...it didn’t quite work out that way so Dr. Kelley said she’d check it out.  As far as the check-up went not a whole lot was new.  My bilirubin numbers, which were at an 8.1 on Kaiser’s last blood test was down to a 3.5.  I knew it had something to do with Dr. Kunin’s program but Dr. Kelley’s last VA blood draw the bili was at 4.9 and she said it’s a standard fluctuation.  But we know better huh?

It’s so great when Ha comes with me to my appointments.  She’s so present and attentive and makes me feel like I can weather anything thrown at me.  Like a layer of Qi armor just below my skin.  We tried a new Pho place after the VA and, of course, it paled in comparison to Turtle Tower.  But we were hungry and needed to get across the Golden Gate before the commuters.

OK, so I’ve got an appt. with Dr. Clark, my Kaiser honkologist, on the 2^nd of March, so I figured I’d go in and get the blood-work done today, Sunday morning at 10am, no crowds, very little waiting, etc...plus, Ha and I could walk down by the Vallejo docks.  It's such a nice walk.  One good thing about Kaiser is they process the blood and email you the results usually on the same day.  You can also compare the previous few months with the current test in any category. I think these graphs, though a little out of focus, speak for themselves.

Bilirubin- A liver (hepatic) function panel is a blood test to check how well the liver is working. This test measures the blood levels of total protein, albumin, bilirubin, and liver enzymes. High or low levels may mean that liver damage or disease is present.

ALT- An alanine aminotransferase (ALT) test measures the amount of this enzyme in the blood.  ALT is found mainly in the liver, but also in smaller amounts in the kidneys,  heart, muscles, and pancreas.  ALT was formerly called serum glutamic pyruvic transaminase (SGPT).  ALT is measured to see if the liver is damaged or diseased.  Low levels of ALT are normally found in the blood.  But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up.  Most increases in ALT levels are caused by liver damage.

ALP- The liver makes more ALP than the other organs or the bones.  Some conditions cause large amounts of ALP in the blood.  These conditions include rapid bone growth (during puberty), bone disease (osteomalacia or Paget's disease), or a disease that affects how much calcium is in the blood (hyperparathyroidism), vitamin D deficiency, or damaged liver cells.

Now the next logical step is to assign the various treatments I've undergone to the graph's calendar,  and try to find out which program coincides with which numbers.  As you can see there's a huge spike between 11/2/10 and 2/5/11 on all three graphs. This cannot be a "standard" fluctuation. 


Pay attention to the smallest, most subtle moments, because happiness and growth is contained therein.

Blog #21, a day late, on the 21st

Double-down blackjack bardo.  I am haunted by an infinity of ghosts who have nothing valid to offer.  Yet they persist in feeding on my brain.  They are doers, takers, and wanters; grey matter shredders.  They twist and turn my mind like it’s an old clock in a small metal box unendingly wound so far past its breaking point that metal, bells, and springs are constantly in a state of tolling ricochet.  It’s so hard to think in here.  So difficult to get away from myself.  The more I let myself physically relax and sleep or meditate the less these lonely haunted souls have to latch onto.  Spiritually I feel very grounded unto myself and my wife, no one else.  It is a very small circle, not what I imagined or think it should be, but so thankful for us nevertheless. 

This cancer has also forced me to look at things about myself and others I never wanted to know.  It’s given me more insight and depth which ultimately feels more like disappointment than any good kind of knowledge.  But from these places that end up in my head I am reminded of a short story I wrote a few years back called “When Blue Was Worth Its Weight In Gold.”  It’s about a volunteer at the VA Home in Yountville, California (which I did) who wonders how much is too much to chew.  In this excerpt he realizes that when you are with someone in trouble, or anguished, or ill, that being there with them is not only all you can do but it’s all that is required.

“I usually feel different when the car door closes, sitting there in the parking lot, before I drive home.  I feel the difference of one time ending to the other time.  I am out of the building and the physical distance created is indicative of the distance I am putting between myself and things that happened, thoughts slowly bleed into memory as buildings sparse into trees and vineyards.  It’s about a half an hour of driving and I realize I’m whining too high in fourth gear, I shift up and over to fifth before I conclude that I have been going over the series of events from the last five hours, not really for any resolute purpose that I can see but a replaying of them as if it’s an emotionally bad, bad hand and all the re-arranging won’t help, the three of spades looks just as bad next to the nine of diamonds as it did between the deuce and six.  Discard, throw away, Quit! “Just stop going there.” keeps clanging around my head, but that's not me. I know it’s not what I’m going to do.  Volunteers don't discard, this is what I signed on for.  I’m here where my presence is just what is required, and the answer may never arise because the answer is what I think I need.  And the result is what rarely matches up to any answer I might think up.  Sometimes all that is left to do is breathe in and out together in the room and know that another person is there.

Whether myself or an infinite number of other anybodies can handle it or help in any way is not what actually does happen.  What does happen is different to and for us all, we each have our version and each one is unlike the other, even when it’s happening.  This is why I let myself be affected by Sergeant Curtis, why I let it creep in and throw a wash of color over the landscape of who I am and what is already there.”

People fade in and out when you have cancer.  Some show up in various ways, and some don’t.  Some amaze you lovingly and others amaze you horribly.  Appropriate behavior is rarely thought out fully.  And what are you gonna do? Tell people they have to read this book or article, or go that website before you’ll deign them with your presence?  Some people you haven’t seen in years ask one of your friends to ask you if they can come over... No call, no email, no nothing.  Mind boggling.  It makes me feel somewhat side-showish.  Hurry, hurry.  Step right up, and for one slender dime see the boy who was supposed to be dead months ago.  Dark huh? OK, I’ll stop.


Body Wish

Aside from all the nut-ball places I’ve let my mind wander, and the last two days of horrible tummy shit, this week has been fairly restful.  I’ve felt good, considering... and I’ve been doing my walking just about every morning.  I’ve let the acupuncture and yoga slip a little because I’ve been yielding to the urges to sleep.  It just felt right to let myself sleep when I wanted to.  I had been manly-like pushing through the tiredness before because I wasn’t gonna let no cancer keep me down.  I discussed this with Dr. Kunin at my last appointment and he said two things that made sense: “Why would you ignore your body's wishes?” and “When you sleep your body can devote all its energy to healing.” Mmmmkay? My intuition scores a home run. Now I just need to solve the scheduling of acupuncture and yoga throughout my week.

Here’s a quote from Dr. Suzanne Friedman  who is an acupuncturist, herbalist, and doctor of medical qigong therapy. She received her doctorate degree (D.M.Q.) in Medical Qigong Oncology from the Beijing Western District Medical Qigong-Science and TCM Research Institute in Beijing, China.  She was diagnosed with stage IV lung cancer on February 25^th 2010.  In September 2010 her CT-Scan was perfect and she is now in remission. 

“Everyone's cancer journey is unique. What works for one person won't work for everyone.  I've found that the key is to trust and follow your intuition and never compromise your integrity.  Western medicine has much to offer, just as Chinese medicine does.  When used together properly, they are able to enhance each other.  How lucky we are to have access to both!”

Cousin Wyatt

OK, so the best news in the world is my Cousin Sharon (if you’ve been following you know how much she means to us) had the BABY!!!!!!  Wyatt, another boy-yippee wah dooski-9lbs.4 oz. and 21 inches long.  We are SO happy.

Valentines Day 2011

Love, Happiness, and Health to Everyone. 

L'Chaim with the Hamotzee Lechem Min Ha'Aretz, Y'all!

#20 Rough roads and Tense times

That was what this week was all about.  I guess that’s what I get for hoping to have a smooth and low-key week.  There was a bunch of stuff that made this week what it turned out to be, but moaning about it will just refresh my memory.  I’ve already taken the stressors into account, and realized what I can have an effect on and what is out of my control, and now it’s time to move on.  Besides, there were some very positive changes this week that are making me happy.  In this dark realm of cancer, happiness is a bolt from the lightening rod of hope that illuminates my soul...that’s gotta be good, huh? 

Dr. Kunin (pronounced like onion with a K) whom I’ve only seen twice, so this is still my initial impressions, has shown me another approach to cancer.  He doesn’t promise a cure but he does promise I’ll feel better and I might just get well when my body is functioning properly.  After my first appointment, he had me do a slew of blood-work to pinpoint all the areas where I was low and deficient in vitamins, minerals, etc... This week he took over an hour to explain how this all fit together.  His approach is humble, sincere, humorous (which was new for me, when it comes to my cancer, and doctors) and with a brilliance that comes from making what you feel is important, and are passionate about, your life’s work.  All that without a pedestal in sight!

Then I got my first I.V. infusion of vitamins from his right hand person, Jadwiga, (pronounced Eega or Veega, I’m still not sure) an amazing woman who runs Dr. Kunin’s office.  She is also a certified phlebotomist, and has one of the most confident and solid personas I’ve seen in quite some time...I would imagine some people easily intimidated by her. 

After the infusion, which took an hour, Dr Kunin got some family health history to add to my files.  My mom and sibling Al were there so that went fairly quickly.  Jadwiga filled me up a box of pills, powders, salves, and liquids for my in-between infusion days, which for the first three weeks will be twice a week, and that was it for the day.  There were a few pills and liquids missing due to stock shortage, but she promised she’d have it all by next week.

So, what’s the upshot of all of this?  How do I feel?  I feel quite a bit better.  I certainly have more energy.  The itching and dry skin has been reduced by three quarters, a major difference, and a joy not to have to constantly apply those creams.  My blood sugar levels seem a bit more manageable.  I’ve gone from between eight and ten finger pokes a day, to about five. And try though as I may, there’s no avoiding the fact that in comparison to the Burzynski price tag, the debt we’re incurring, hopefully lessened by contributions here, is far from daunting, overwhelming, and demoralizing.  This too adds to my overall better demeanor.

#19 Back to Basics

Sunday dusk and I’m just awake from a two hour nap. Having arose at 3:30 am, and unable to get back to sleep, I started my morning.

This week the itching and blood sugar levels are still bothersome. My cousin Nicole sent me a great lotion called Sarna, and Dr. Katie at the VA ordered me up some medicated body lotion, between the two it’s fairly bearable. I also found (at the pharmacy) these small two ounce jugs of fast-acting glucose called DEX 4 with fifteen grams of carbs per serving, very portable, and take about eight to ten minutes to work. At home I use Mango nectar usually mixed with soda water and try to eat balanced smaller meals throughout the day.

My eyes and skin have lightened up considerably, even though my latest blood tests show some pretty steep rises in all the wrong places.  I actually feel a bit better for longer periods of time.  Dr. Kubove at the Burzynski clinic called with what was to be my regime for the next few months.  It was a combo of weekly Herceptin infusions and Tarceva (Erlotinib) pills on a daily basis. We didn’t have the final prices on all this, not counting the $4,500 a month for case management, nor the cost of the three pills they already had me on, but it would be close to, if not more than $15,000 a month.  This is a figure that we couldn’t even begin to carry.

I had stopped taking the PB antineoplaston tablets a few day before this news to see the effect on my energy levels and it was dramatic.  I did not feel barely present most of the time and that had a really good effect on my overall attitude.

This week also had a switch in my Kaiser oncologist, to a Dr. Bruce Carson Clark and he really seems to be a caring, helpful, straight shooter.  Quite refreshing for Ha and I in our experience with Kaiser doctors generally speaking.  Dr. Clark thought Tarceva dangerous considering where my condition was at.  My gut instinct felt he was right.  With the side effects I had read about, if this stuff failed, this was not the way I wanted to live for even a month.  And after much discussion with my wife and mother we decided to drop the Burzynski methods entirely and go with what had been my basics from the beginning. We had also spoken with a Dr. Kunin in San Francisco who worked with vitamins and sounded interesting...we’ll see.  

I’m hoping the coming week will be smooth and low-key , with acupuncture, yoga (to which I’ve added some liver based Qi Gong), meditation, massage, mind-body work and rest.

My mistake

If I had a buck for every time I thought I was right, and I turned out to be wrong I could keep myself in Schlitz and Slim Jims for at least a month!

Tykerb and Tarceva are not Chemo drugs. The way I understood the explanation is that they are Gene Targeted Therapy drugs. OK, some research, and then a nap. Another blog coming Sunday unless something major happens.

#18 Ch, Ch, Ch, Changes. Turn and face the strange...Yikes!

The blood sugar drops have been getting harder to control, the itch factor has cranked up a notch or five, and the pain levels had me resorting to more and more Jungle Juice (sub-lingual Liquid Morphine) and the depression was devastating so I stopped the Tykerb because these are all its side effects.  Except the depression, but I’ll bet it’s a contributor to the overall depression reason.

Dr. Cole at the VA emergency clinic said I looked a little jaundice and so did Dr. Kelley a few days later, and yet another new Oncologist we saw at Kaiser,  one Dr. Bruce Clark, and our first impression of him was that he was attentive and knew my history thus far, and he too mentioned the yellowed skin. Then this morning coming out of the shower and looking in the mirror it had progressed to my eyes...YIKES! Yet one more symptom of Tykerb, which I had stopped four days earlier. Hopefully they’ll all wane slowly away. 

The Burzynski clinic did manage to get the rest of my tumor markers from Kaiser and now they’re talking about Tarceva, more chemo.  And I can stop looking for an infusion clinic for the Herceptin because Tarceva is a pill.  The price range being around $1,800 to $3,095 per 30 pills a month.  Unless they want me on more than one a day.  I thought I was going to Texas to get away from chemotherapy.

The depression seems to be lifting a little tonight; it’s 7pm and I’m not feeling like a basket case.  My wife and I have a lot of thinking and talking to do this week about our next steps and what the side effects of Tarceva are gonna be, and what kind of quality of life symptoms I can expect.  And what kind of questions we need Dr. Kubove to answer for us. Thank the heavens I have such an amazingly intelligent wife and partner.

OK, fading fast...next week.

#17 As Up To Date As It Can Be To This Point 1/23/11

And by that I mean it’s today, Sunday, another weekend day to spend with my wife.  We did have a lovely, quiet and meditative walk this morning, although I’m down from an energetic forty minutes a day, to between 20 and 30 minutes at a reduced pace.  But that’s OK, morning air is filled with pure Qi; the sunlight, each breath we take in and the nature that surrounds us is the best soul food.
It has been a rough week that started with a trip to Kaiser’s emergency “clinic” last Saturday.  I wasn’t feeling too bad Friday night and had made some fish and baby brussel-sprouts for dinner.  Ha loved it, so did I but I could only handle two bites of fish and six or seven mini brusslers.  About twenty minutes had passed when on the far right side of liver territory the semi-new pain I’d been having for about a month or so, not real bad pain but noticeable, shot up to a fat seven.  I hadn’t used any breakthrough pain meds, I call it Jungle Juice (because it tastes like the Primate house in the Zoo smells), in about three weeks to a month.  I sucked down two milliliters, one dose, invited my wife to the couch for a hand to hold and some hugs, and waited a half hour.  Felt like a nine now so I did two point five mLs., and we called the advice nurse at Kaiser.  Symptom talk ensued, the pain began subsiding, and I was given an appointment for the next day.
The next day moved painfully slow at first then way too fast for us towards the end.  I could easily write a fifteen-thousand word exposé about Kaiser’s incompetency, but I’ll save that for the book I’ll be writing when I have the more than a third of my brain to work with, sans cancer and drugs.  But what ended up happening is, without contacting my oncologist at Kaiser, Dr. Schwartz, they decided that it was gall stones and would be doing an ECRP, or removing my gall bladder.  By this time it was the next day, Ha and I had slept in the tiny hospital bed because they never brought her in anything to sleep on even after asking six times, my mom was there by now-of course, and we three huddled and decided to check out against doctors orders and drive home ( they had been giving me IV Dilaudid shots) call the advice nurse at the VA and start over.  Very good decision as it turned out.

Saw the twenty-four hour clinic doctor, a Dr. Cole-sharp guy, who said it didn’t seem like gall bladder anything and said that he’d contact my oncologist, Dr. Kelley and that she would call me.  Rather than admitting me he asked if I could control the pain, which by this time was controllable with the Jungle Juice, and sent me home. I saw Dr. Kelley on Wednesday, had an ultra-sound and blood-work on Thursday and got this email from her on Friday:
Hi there,
Good news that the ultrasound doesn’t show any evidence of gall bladder infection or blockage – there is no “biliary dilatation” or stones, and there is just mild wall thickening and some sludge in the gall bladder which is definitely NOT a reason to do surgery, probably isn’t causing any symptoms at all, and can be seen in “normal” cases.  Also, there is no ascites seen on this study, which is good to know.  Hope you’re feeling better!
I have had to add the Jungle Juice back in my regime but so far it’s only been two to three doses a day.  And I’m having some other new symptoms as well. I have a real hard time keeping my blood sugar up, and being diabetic which previously I handled with exercise and food, has me taking my blood sugar five to seven times a day, sometimes more.  I always have to keep some form of sugar handy because severe drops are way serious.  Then there’s the itch, I’ve been kinda itchy for a while but nothing like this, I’m scratching like a fiend all day and everywhere, with the exception of my head, neck, face, pubic area, and the soles of my feet.  It started with my lower legs and calves, along with my abdomen then crept all over. Some of it gets red and rashy, some doesn’t. But it itches friggin’ everywhere.  And the last one is depression which I’ve never really had seriously enough to seek help, and in wondering about the outcome of all this, would seeking help be helpful? So far my wife and family have been all I need. I think I’ll keep it that way.  Also the mind-body work that Dr. Rossman has taught me through the CD’s and our acupuncture sessions are working quite well too.
Gosh, it feels so good to be caught up.  Tomorrow is Craig and the Skype, then in the afternoon Mumsy is coming for another sleep-over and to drive me to acupuncture in Marin County on Tuesday. I’m going to try and rest as much as possible this week, it really helps.