Shiva for Hunter

It was a love fest.   From the moment I walked into Ha’s place, I felt the warmth of the group.  Even though there were several people I had not met, I felt welcomed and put at ease with everyone for several of the guests were making a point of greeting and engaging in conversations with those of us who were fairly new to the family and friends.

The day was perfect: sunny with an occasional white cloud drifting by.  Lovely balmy weather, with a soft breeze.  It was like the weather been planned especially for a celebration of Hunter’s life.   Beautiful people gathered together for a beautiful honoring of the life of our dearly beloved Hunter.  There was a lot of laughter remembering his witty comments, and pleasure in recalling the great memories we had.   Ha and Barbra moved gracefully through the group consoling all of us, more concerned for our comfort than asking for commiseration from us. 

Also, I don’t know who they were, but the best cooks in the area  brought wonderful food for us to eat, honoring the great chef himself.  There was an abundant amount of hearty, delicious cooked dishes and refreshing fruits and a beautiful little cake we shared as we sang Happy Birthday to Hunter, who had just moved into his 56^th year.  It felt as if he were with us holding Ha’s hand as we saluted him.  That was one of my most cherished memories of him, of his great love for Ha, having her close beside him as he read his poetry and her quiet presence supporting him.

And to my dearest friend Barbra, who has gone through the valley of darkness too, while she gave her boundless love and energy to support Ha’s and Hunter’s brave efforts to beat the odds.  I am so proud she is my good friend.  There was never a moment of “poor me” but only courage and the willingness to help whenever there was a need, day and night.

Nearing the end of the gathering of family and friends, Barbra asked us to join her in reading the Mourner’s Kaddish, a beautiful closing prayer.

Frances Elliott

July 17, 2011

Adieu, My Brooklyn Toughness

Hunter has departed to a new sojourn on July 6, 2011 at 2:55 pm.  Beside his very unique character, he packed and carried along the love for him from family and friends and care from people that we’d come across since he had been diagnosed with liver cancer in March 2010.   A tough departure at the beginning but toward the end it became as peaceful as it should have been.  This post is my good bye to my Brooklyn toughness husband and also a dear friend Hunter.

Hunter liked to call himself “a guy from Brooklyn” although he left the East Coast years ago and moved with his parents to Marin County when he was a young boy.  He did have a Brooklyn accent though and people would recognize it when they spoke with him especially when he was doing demos in the stores before he was forced to be a full-time cancer fighter.  He didn’t like the wordings that people would often use such as “battle,” “fighting,” “combat,” etc., so when we started this blog he called it a Sojourn of Living With Cancer.   I liked it too as the word “sojourn” reflects our fear, hope, and destiny.  Oh my dear husband.  How much he wanted to live!  

Everyone wanted to know how we met and ER doctor was not an exception.  When I brought Hunter to the VA Hospital in San Francisco two weeks ago, the ER doctor looked up and asked Hunter why he was examining his abdomen “How did you two meet?”  He asked in a very natural way that Hunter paused for a second as our love affair might have had something to do with the course of treatment. 

They, the doctors, came up with a combination of PO and IV given every two hours for pain control.  The graveyard shift nurse was a young girl coming to California from Wisconsin to pursue her nursing career.   She took such a good care of Hunter and stayed on top of the pain schedules.  Coming in the room every two hours, at 3 o’clock in the morning, she suddenly asked Hunter while giving him the shot “How did you meet her?” and shook her head toward me who was resting in a malfunctioning recliner in the corner of the room.  I pretended sleeping while listening to Hunter whispering to her his love story with me in it and tried to hide my smile.  The girl in turn told Hunter about her boyfriend and that they were very serious and getting married soon.   Three o’clock in the morning, darkness, hospital room, pain, Dilaudid shot, and love stories.  It reminded me of Crime and Punishment by Dostoevsky.  It’s was beautiful though!

Hunter wasn’t afraid to say “I am a good man!”  When Chaplain Steve came by, he put his hand against Hunter’s belly right where the liver was and said “You’re a good man.  I know it’s hard to understand but…”  Hunter was right on “I thought it’s very easy to understand.”  We all laughed.  My husband.  What a funny man he was! 

And he took off.  Just like that, simple, low key.  As he had written:

Before I sleep my thoughts drift
through the days moments
joy and pain
within me and not
in hope upon dawns break
I can again
-6/2007

Adieu, Mon Amour.

Hunter Austin Born June 29th, 1955

It was Wednesday July 6, 2011 at 2:55 PM that my son Hunter drifted peacefully into what he called "The Big Sleep".

In his last hours he was surrounded in love by his nearest and dearest family and friends.  Ha his wife,  the love of his life, his Mom Barbra, his Sister Alex and her partner Sara, his first cousin Craig and Craig's wife Sharon,  his best friend, Marvin and a dear friend Ray.

The musical strains of "Golden bowls of Compassion" (by Karma Moffett) softly enveloped us. We held his hand, smoothed his hair, kissed him and told him of our love as he  gently went to a place where there is only peace.

Hunter will be cremated.  Some ashes will be scattered to the wind at his (and Ha's)  favorite hilltop meditation spot.  The rest will be given to family members.  He also asked that some should be scattered in New Hampshire where he spent his childhood summers.  Ha and I will make the trip one day soon.

Amir, Hunter's 5 yr. old nephew (Alex's son) said "I will take 2 ashes and throw them in the ocean and keep some in my magic wishing box high on the shelf in my room. "  He loved his Uncle Hunter.

Barbra

6/29/55 - 7/6/11

After an amazing life-loving battle and blowing the averages out of the water, my bigger than life big brother passed away on July 6, 2011 or the 4th of Tamuz, 5771 according to the Jewish calendar.

He died as peacefully as we could have hoped. Enveloped with love. Held every step of the way.

The love of his life, his wife Ha, did not leave his side from the time he went into the hospital on Monday morning until his passing on Wednesday afternoon. Our mom, Barbara, was also there keeping us all connected as only she could. She was busy making sure their sweet cats were fed, fighting with nursing staff to get him properly medicated and being the matriarch of the mishbucha (family in Yiddish). My partner, Sarah, and I were also there keeping vigil since Monday morning, bringing love, comfort and food to everyone as best we could. Our cousin, Craig, was there until the end too. He put his busy life on hold to be part of this process. His strength and tenderness was amazing. Our cousin, Sharon, also came to be with us, which meant so much to everyone. Hunter's best friend Marvin arrived on Wednesday afternoon and bid his farewell to his dear friend. We were all so grateful that we had time to show him how unconditionally he was loved and to say goodbye.

For the last few hours of his life we held him, literally. Each person (Ha, Mom, Craig, Sarah and I) each were touching some part of him. A hand, a foot, his head or each other. It reminded me of the tradition at our synagogue where everyone at Shabbat, during the blessing over the bread, either touches the challah or touches someone who’s touching the challah. The humor would not be lost on Hunter that he was the challah!

Humor was, in fact, something he had up until the very end. When the doctor came in to explain the process to him on Wednesday morning, she noted that he would most likely drift off into a sleep like state. With a little wink in his eye and wry smile on his lips he looked up and said “The BIG Sleep!” Which happened to be one of his favorite Humphrey Bogart films.

In his last days he expressed so much love for his family and friends. He loved and adored his nephew, Amir, and was so grateful to get to spend time with him on June 29^th, his 56^th birthday. He also told me of his great love for his youngest cousins; Ari, Talia, Elana, Zachary and Wyatt and all of their parents and their loving and wonderful Grandparents, our Aunt Rhoda and Uncle Stan.

As a family we are also very thankful and grateful for the care he got at the San Francisco Veteran’s Hospital. Especially his Oncologist, Dr. Katie Kelley and his GP/Palliative Care Doctor, Dr. Barbara Drye.

He left his body without pain while listening to his favorite music, Karma Moffet’s Golden Bowls of Compassion. Being held and loved by those whose love for him was limitless.

#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.