#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.

#16 Getting Treatment

We were so happy walking in to our house after three weeks in Texas, it was a joyous relief. Mom had stayed there to take care of the cats, and the house looked clean and felt calm, just how we left it. The cats were happy and healthy. Our home truly is a sweet home. OK, on to the tasks at hand...and there have always been tasks at hand since this ordeal started.

Our doctor from the Burzynski clinic had given us a list of doctors in California that would be willing to work with them on my Herceptin infusions I needed once a week. I’m guessing now but I would imagine that seeing as how the FDA only approves this drug for breast cancer (just recently approved for gastric cancer in Europe) that many doctors won’t even consider administering Herceptin for liver cancer. The only one remotely close to us was in Fresno, three hours away by car or train, but the real kicker was the fee. Herceptin itself costs about over two-grand per infusion dose, but for what this guy wanted on top of that I could have flown back to the Burzynski clinic, got the infusion, and flown home with enough left for a burger and fries!

Everyone flew in to action and the upshot was a reasonable rate with a doctor in the Bay Area.  As I haven’t had my first infusion since getting back almost a month ago (not a good thing) I don’t have much more to add.  We’ll see how the first one goes.  I’m scared and wary, but as of late, those feelings have become a huge part of this thing.

Before we had left the clinic, Dr. Anderson had taken me off Tykerb because my liver enzymes had risen and the side effects were big time funkified, and she said that when I started back up it would be with half the dosage and gradually work my way back up. I emailed Dr. Anderson for the fourth time since getting back and had always had pretty quick replies.  This time after a few days I got an email (not a phone call) from the clinic that Dr. Anderson was no longer at the clinic, and Dr. Kubove would be my new doctor. Then I got a call from Meighan, a nurse that works with Dr. Kubove, saying that she would be my liaison, as it were, for Dr. Kubove and she’d be checking in weekly, but that if I had any problems to give her a call.  This is part of the $4,500 a month the Burzynski clinic charges for case management; there are other tasks involved like checking my weekly blood-work, which we have to pay for at Lab Corp, and I’m sure there are other things as well...

I had also been on a drug, Zolinza, which sounded like a Flamenco dancer to me, that also had some rather unique side effects.  Except Dr. Anderson also stopped that the next day so I’m not quite sure which drugs they had attributed the side effects.  Although Zolinza hasn’t been mentioned again I have been on one (250mg) Tykerb a day for 5 days and am supposed to go up to two a day in three days. Scared and wary.

Buiding A Possitive Attitude

Hunt had asked me to write a post for our blog about our preparation for the trip to the Burzynski Clinic and I kept postponing the task. Not because I didn’t have the time nor the events to write about; I had way too many things in my mind and didn’t know where to start. Although we’ve been on this cancer journey for almost a year now sometimes I feel like it’s just a dream or nightmare and if I try to wake up then the nightmare would go away. It didn’t go away and here I am writing for the blog.

The only good thing about this cancer is it has given me an opportunity to observe the people around me, and to learn how they behave differently under certain circumstances, and that these behaviors of humanity have always existed. The person that surprised me a lot even though I always knew how amazing she is, was my mother-in-law, Barbra. She emerged into this cancer journey as a caring mother with her strong personality and an ability to handle any situation which I couldn’t believe if someone had told me before. She never wants to admit her age, but living more than three quarters of a century – I’ll let you to do the math, would have given her all that strength and the attitude of I-will-never-give-up that her son will be getting better. In just a short period of time she could find out the information that I needed by researching the Internet or by simply making phone calls. The most challenging task that she’s been handling pretty well was to survive being around with Hunt while he was not in a good mood due to pain, or suffering from the side effects of the medications. Not being a mother myself, I couldn’t imagine what else a mother could have done for her children.

Hunt’s cousin Sharon was another character that has appeared into our journey as an incredible person. She was the one who fired up the questions about Hunt’s health issues when we came to her house for the Seder last year, two days after Hunt had the liver biopsy. Since then, Sharon has been involved heavily with us by providing us deep information about liver cancer and pros and cons of the treatments that Hunt has been given. The thing I really appreciated about Sharon was she never told us what to do but left the decision for us to make as any treatment would have the side effects as well as the benefits. With the Burzynski treatment protocol which focuses on Hunt’s genetic tumor markers HER2+, she would give us the benefit of the doubt by moving forward on making comments about the treatment regimen without questioning if Dr. Burzynski may be a quack. Hunt and I have brought Sharon’s notes with detailed questions with us to the appointment with Dr. Kelley at the VA San Francisco, then to the appointment with Dr. Anderson at the Burzynski Clinic and it turned out her notes were very helpful. These notes may have been boring for those who are luckily not dealing with cancer but for those who are fighting cancer for their lives, I will be happy to share them with you, of course with Sharon’s permission. On top of everything that Sharon has done to help us out, Craig, her husband, has always been there for us too. He’s even coming over to set us up with Skype, so we’ll be able to see our families on the East Coast and in Vietnam! 

 

Another character I would like to mention is my sister-in-law Al who I usually call “Bro.” As very smart and brilliant as she is, Al’s role in her brother’s cancer journey has been very unique. Through her social network, she found Dr. Katie Kelley at the VA Medical Center in San Francisco and was able to get an appointment for Hunt to be seen within the next few days while we had been struggling with Kaiser to find a decent oncologist. Dr. Kelley has turned out to be a quite incredible oncologist and we feel lucky to have her. Recently with the Burzynski clinic treatment protocol when our funds for Hunt’s treatment became scarce, Al has volunteered to help us by working with our cousin Craig and friend (Hunt’s ex-wife) Katie Macks to organize fundraisers for Hunter. I know running a law firm and taking care of her son Amir would take up much up her time so I really appreciated the time and effort that Al has put in to help us.

It wouldn’t be a complete picture if I didn’t mention Aunt Rhoda and Uncle Stan, cousin Nicole and her family, my mother-in-law’s friends Judy, Carol, Ray, and Hunt’s friends Diane and Lauren and best friend Marvin. Together they give us hope and help us build a positive attitude that Hunt will be in remission.

#15 Trip to The Burzynski Clinic in Houston, Texas (from December 12-31, 2010) to start treatment

It was a clouded and drizzly day when we walked in to the four story dark-mirrored glass building. “9432 Burzynski Clinic” in half a story high raised white lettering written across the top. Landscaped and finely manicured surrounding gardens with the occasional bench here and there; impressive was my first impression. That continued with just about everything, from the level of care that we received, to the exit plan packets with all our records and a set of standing orders for the doctor we were to find to continue our Burzynski protocol. I always hear the Dr. Burzynski’s critics say how expensive it is, and believe me it had my head in a hive on the very first day, which has also continued, and probably will for some time. But in comparison, let’s say if chemotherapy and radiation were not covered by insurance...I couldn’t even imagine what the Pharma corps are hosing the insurance companies for those drugs, and guess who those guys hose? So when you look at it that way, or this, it’s still a ton of dough and it has to be paid. Judging from Dr. Burzynski’s track record and what I’ve seen at the clinic, I’m just glad I found him.

We were there for three weeks over the holidays and had a quiet but good time. I’m a Jew and my wife is a Buddhist, so Christmas hasn’t ever been high on the radar. Ha knew this guy that used to work with her in Vietnam and now lives in Houston with his wife. Tim and Lana, super great couple, were very caring and couldn’t do enough for us. They were really fun and funny; they absolutely loved this one buffet style Vietnamese restaurant they took us to, Kim Son. Lana explained how you have to have a plan of attack to successfully eat a mountain of food. Lana is a small slender woman, and Tim is no giant nor is he fat. Over the course of two hours, after Ha and I were done and done in the first forty-five or so minutes, Lana and Tim were just starting their first of three dessert courses. When I complimented them on their plan, they said, “Yes, yes, thank you, but no to go, understand? Have to eat here, everything, eat here!” Then we all started laughing. Good times.

Times like that help me out tremendously because symptomatically there’s just so much to deal with all the time. Usually Ha and I walk for a half an hour to forty-five minutes daily. My mind feels fairly clear and I’m able to converse coherently. I’m able to feel grateful for having another day filled with moments. If I sit down and try to read, write, anything really, I have a tendency to drift but can usually get a few things done. Then as the day passes noon I slowly start to become cancer’s marionette, and the disease is the manipulator of a vast legion of wires. But the one wire I can never let it have control over is the one wrapped around my soul. All the other wires are meant to weaken the one. The soul wire. When I realized that cancer is a fight for my soul I started to understand how people give in and it is not the easier or harder way it is just the other way. Both wires may be garrotes.

#14 What will you do, what WILL you do?

It was about this time my mom gave me Suzanne Somers’ book, “Knockout” and I started reading.  Reading doesn’t mix well with my fatigue symptom nor the opiates.  I can read a page to a page and a half, then doze off, and then wake up and have to go back and skim over what I just read before starting again. So it took me a couple of weeks to get to the part in the book about Dr. Burzynski, who did not use chemo but something he was calling Antineoplastons.  I was intrigued so I went to the web, that wonderful land where you can find everything right and everything wrong with everything.  And I did; I also found out that they just came out with a movie about him! Now the serendipity gong struck a big Zen toll. There was a premiere in Berkeley of the new film “Burzynski-The Movie” next Friday in Berkeley.  So I bought four tickets and myself, Ha, Mumsy, and Marvin decided it was a couldn’t miss opportunity. My Cousin Craig (Sharon’s husband) met us there.  Just as an aside, Craig had met us at many doctor visits, with and without Sharon, and takes pertinent notes like a champ.  He is also one of the sweetest, most caring people I know.

I was still on the tail end of the Capox horror but I wasn’t about to let that stop me.  Sadly it did.  Fortunately and unfortunately it was at the tail end of the movie but right before the Q & A section of the evening, and boy did I have some Q’s, and desperately needed some A’s! But Between the nausea and diarrhea I had already been to the bathroom five or six times throughout the movie and now felt like it was getting worse, so we made our goodbye’s and Ha and I dictated some quick questions to the group and hightailed it outa-there.

My mom was the champ that night! She’s got this gift where she can get somebody talking about themselves and exchanging information with her, becoming fast friends, and the next thing you know she’s having them over for dinner.  I have never understood this, but I’ll tell you, I am so grateful for it these last few months.  She met a woman there, Teresa, who lives in the Bay Area that has been in remission for 9 years from the Burzynski treatment.  Teresa is a huge help and continues to be.  Also mom got the telephone number of a guy named Schad in Texas, who had (yes had) the same cancer as me and has been in remission for three years because of the Burzynski Clinic.  Mom’s are such a good thing.  And mine is up there with the best of them.

Ok, now it was time for some serious research, telephoning, planning, and getting as much information from Dr. B’s Clinic as we could and try to reach a decision.  Giddy-up y’all.

#13 San Francisco VA Medical Center Dr. Katie R. Kelley (May 05, 2010)

It was nicer here, more of the staff smiled at the patients and each other, the level of respect was pretty cool.  We found oncology, checked in, and had a seat.  It was my mom Barbra, sib Alex, Ha and myself.  Dr. Kelley has turned out to be one extraordinary oncologist.  At the risk of fawning effusiveness she has been one hundred percent behind every standard and alternative treatment that was put on the table from yoga and acupuncture, to clinical trials she heard about, as well as Reishi mushrooms and the Burzynski Clinic.  She could only recommend the FDA approved clinical trials, but she would let me know if it was safe for the other things.  With the exception of the Burzynski Clinic, on which ethically, she couldn’t really talk about. But she did want to see all the reports from the clinic.

At Kaiser they had put me on the Nexavar, but I was supposed to start full dosage the next week.  Dr. Kelley kept the dose lower for a month and then raised it to full.  She said the efficacy would be there and it would give my body a chance to get used to it. I felt a lot better on the Nexavar.  Aside from a few side effects like little sores at the corner of my mouth-Blistex, dry feet and hands-Eucerin, and even after preparing great meals for my wife and I, I’d sit down and the smell of the food would sicken me-Peanut Butter filled Pretzels and Popsicles on those nights.  Other than that Nexavar seemed pretty miraculous.  I felt good and the quality of my life, all things considered, was good.  I continued my thirty to forty minute walk in the morning almost every day, practiced the restorative yoga, and woke up fairly happy most days.  But most days there was a beast looming...it was always there.

Then a couple of months later Dr. Kelley told my wife and I about a clinical trial she thought had real potential.  First thing though is I had to stop the Nexies for a month! But I trust her so I stopped.   After she tried and tried, for that month, and I did many tests to get me into this one clinical trial, I was eventually turned down through no fault of hers.  The ’08 heart-attack was the culprit.  It was a fairly crippling blow especially because I couldn’t go back on the Nexavar.  Dr. Kelley said that at this point it would be too risky.

Her next recommendation was a combo chemotherapy deal called CAPOX which her boss recommended.  It had a ten percent chance of working and had been used previously for a different type of cancer that had metastasized to the liver, but never directly for liver cancer.  It involved a regimen of Capecitabine plus Oxaliplatin one was an infused drip for which I needed to surgically have a "port" inserted and the other was pills.  A port is an implanted direct line to a major vein. My intuition told me no but ten percent are the best odds I’d heard yet and was swayed.

We read the side effects and Dr. Kelley explained them as best she could.  It was very strange. After the first infusion anything cold made my face, fingers, and hands tingle.  If I drank anything, even above room temperature, it felt like drinking gravel.  There go my popsicles.  And that lasted for three weeks, at the end of the fourth week it was time for another infusion.  My fingertips began to crack and split (which they still occasionally do) and bleed.  At around four to five o’clock the fevers and cold sweats would start...every night.  Sleep was like intermittent at best, and every night it would be the same scenario, sleep a couple of hours up a couple of hours.  The first half of the day I’d feel ok, so I kept up the walking but it was down to a slow half hour.  Then in the second week depression was strangling me and every night when the fever went up to 101 or so I began to think that this is my last night.  I would not be waking up tomorrow.   When I’d wake up throughout the night I would be scared to go back to sleep so I took a Xanax. Which helped with the stress and relaxed me enough to sleep a couple of more hours.  I set my iPhone for six in the morning with a harp alarm and a message that read “Another day you lucky bastard!”

#12 First visit with Dr. Corey Schwartz (April 29, 2010)

We showed up en masse, there were six of us.  Myself and Ha, Mumsy, my sib Al and her wife Jessie, and our secret weapon, my cousin Sharon.  Sharon works for a pharmaceutical company and a good part of her job is to study cancer and cancer drugs.  She was an incredible asset that day.  And she’s a Samurai warrior when it comes to dealing with oncologists. But when it comes to her kin, do not mess with Sharon’s family!  I had a whole new respect for her that day.  I’m pretty sure Dr. Schwartz, after his 15 minute private conversation with her, had not only respect, but when he came back in the room, the playing field seemed to be completely level.

We then talked about therapies but because of my AFP levels and portal vein blockage, previous history, on and on, wasn't going to be an option.  I was left with one of those choices that's not really a choice.  The only thing left for me was this drug called Nexavar (Sorafenib) which is, and Dr. Schwartz made this abundantly clear that it was a life extending drug, NOT a cure in any way shape or form.  Then he said I had about five or six months to live, and with the Nexavar possibly eight.  Eyes met eyes and looked away, the room seemed close, the air went out. 


Dr. Schwartz excused himself.  “Do not forget about the pain clinic appointment.” I said, and he replied “I’ll make that right now.”  Which if it was done then the pain clinic lost it because it took over a month to get in there and then a month to find the right mix that worked.  It was beginning to feel like every time I left Kaiser in Vallejo that I felt worse than when I went in.  Especially in the months to come and the emergency visits.  I began to think that they're gonna kill me in this effing place!

My amazing sibling’s best friend’s father happens to be Dr. Lawrence H. Einhorn.  He’s the doctor who led the team that cured Lance Armstrong.  If you gotta drop a name in the cancer world very few carry such gravity.  Because of this connection and some serious phone-work Al had gotten some names of doctors in Kaiser and the V.A. (I’m a Veteran and have veterans insurance too.)  Long story short, I was fortunate enough to see Dr. Katie Kelley at the V.A., she worked full time at U.C.S.F. Cancer Center and one day at the V.A. U.C.S.F. is also where Kaiser sends all their liver transplant, among other therapies like clinical trials when the trial is not available at Kaiser, that type of thing.

Dr. Kelley has a great reputation and is a wonderfully caring person.  And now she was my oncologist.  I will never cease to be amazed at my siblings ability to make such a huge change at the exact moment I need it.  Dr. Kelley talked with Dr. Schwartz and he set up a telephone appointment with me so he could be kept in the loop.  On the day Schwartz was supposed to call he asked for someone else? “Who”, I said.  He repeated.  I said “this is your liver cancer patient, Hunter Austin.”  “Oh, do you have an appointment today? The computer must have made a mistake.”  (I can't tell you how much I love that excuse) I was flabbergasted.  Enough of that nonsense, suffice it to say I haven’t, to this day, heard from him.  Thrive...oh yeah!  I did see him in the hallway when I was picking up a prescription and he looked right at me and walked on by.  I stopped and said “Dr. Schwartz!”  He turned and still nothing.  “Hunter Austin? Liver cancer?” “Oh, how are you?”   I chuckled, said “great” and kept walking.  I believe I heard him saying “I’m sorry, I have so many patients... .”

#11 First Oncologist Appointment (April 19, 2010)

Dr. Fehrenbacher was the first oncologist we saw.  My wife was with me for this one and I voice-recorded most of the conversation.  I was beginning to feel like Lenny Bruce and was sure that Dr. Cohen had let this guy know what a volatile patient I’d been so far.  Replaying the tape before I sat down to write this I realize my paranoia was fairly well founded.  I’m not going to go into detail about why, suffice it to say the tape says it all.

Once Dr. Fehrenbacher started asking the questions that I’d answered for doctors at Kaiser at least thirty times already I began to lose my patience.  But I did manage not to go adversarial on him.  He was in the middle of asking me about the heart-attack I’d had in ’08 and I just stopped and made a left.  I went in to a lengthy discourse starting with how I thought we were there to find out what exactly was wrong with me, what I could expect, and some sort of plan to deal with my current problem.  I had also asked for Dr. Corey Schwartz to be my oncologist, I told Fehrenbacher it was because of a feeling I got when I looked at his picture in the outer-office. The truth is, I’m a Jew (Rubin and Cohen so far, it couldn’t hurt to have a Schwartz.) so I tend to pick my people...it’s usually not a mistake.

With this doctor we did find out one quite valuable bits of info, i.e. a normal amount of alpha-fetoprotein (AFP) in people ( I don’t know the unit of measurement) is about 15, with liver cancer it goes up significantly, with mine it has never dipped below immeasurable.  In other words all the blood test says is >35,350.  That’s the highest they measure.  That and a one other piece of the puzzle, we were soon to learn; like my portal vein was almost entirely thrombosed (blocked by the tumors) would prove to exclude me from most things they had or were coming down the road.

#10 We are in charge of us (April 10, 2010)

So far we haven’t seen an Oncologist and we’re feeling way confused.  We started digging on the web for some answers and turned up a relatively small number of items when it comes to Hepatocellular Carcinoma.  Transplant, T.A.C.E., Chemo-embolization, etc...I also started thinking about angles of approach and knew that it was important for me to put together an alternative team who would help me work on releasing this cancer from my body.  

I decided that open mindedness, would be crucial and to try my hardest not to judge—prior to research.  I knew acupuncture, yoga, diet, massage and meditation would be my foundation and luckily had a number of years experience with yoga, meditation and acupuncture.  The kind of yoga I had been doing, a fairly strenuous Iyengar routine, wasn’t going to mix well with my pain levels.  A Restorative yoga teacher was what I needed.  I found Cynthia Friedman, who happened to be a licensed family therapist too!  She provided a great foundation for this prop-oriented, more gentle style of yoga, and some very good therapy sessions.  Very respectful of my new limitations and super attuned to my Qi.

The last great acupuncturist I’d had still practiced, but all the way over in Santa Rosa, so I started with one in Berkeley.  Soon heard about Dr. Rossman in Marin and switched.  Dr. Rossman is also an M.D. who started acupuncturing people over thirty years ago in Marin, and his breadth and wealth of knowledge, sensitivity and caring are abundant in every aspect of his practice.  And, lucky me again, he also specializes in the mind-body connection, which back in my pre-yoga/meditation years made me a little squinty, but now had my full attention.

And introducing Michelle “Manos Del Oro Solido” Gonzalez.  LET’S GET READY TO RRREEEEEEEEELAX! This has been an hour a week where I can be content with just focusing on the beauty of the ability to inhale and exhale...Michelle has an innate ability to not only feel where the stress is stored in your body, but to also apply the proper pressure and movement to help that stress disappear.  Sometimes we also do whacky Manga-style tumor annihilation visualizations.

Diet?  I went as organic as possible, with the emphasis on veggies, legumes and grains, and meats. I bought a good water filter and doubled the amount of water I was drinking.  I checked out food/cancer books from the library and started making lists. I also got a juicer.  Red or purple grapes, beets, and a few dandelion leaves I called the cancer crusher.

 Meditation always followed yoga for me and I stuck to that routine.  It took Ha and I a while to get all this together and then work with it when my schedule started filling in with western medicine oncology madness.

Oh yeah, I forgot, I wrote to the Medicine Man who married us and asked him for help.  Two weeks later I got a medicine bag with stuff in it and he said that we could add more, and to wear it around my neck, and a letter telling us that we would be in the sweat lodge prayers.  Ha and I did a sweat lodge with Ricky and Andrew and part of their tribe before our wedding.  I was deeply moved by the fact that all they ask for is mercy.  The night we did the sweat I dreamt of my father, a man with whom I had a very tumultuous and complex relationship, we were driving around with me at the wheel and I was making him laugh.  When I saw Ricky at the wedding and told him, he said “It’s not uncommon to dream after; I hope you guys worked it out.”

#9 Liver Cancer - The Diagnosis (April 5, 2010)

Wife again...

Hunt received a phone call from Dr. Cohen at Kaiser in Vallejo.  Dr. Cohen was brief on the phone informing the pathology report was back and he wanted to see Hunt in his office to discuss the results as soon as possible.  I was at work when Hunt called me and asked if I could leave early that afternoon to go with him to the appointment.     

For all Hunt’s struggling with Kaiser and the health care system in general to get proper diagnosis, for all the constant pain, the painful colonoscopy procedure and the tests he had been through, I had never been with him physically.  For thousand times I regret that if I were with him or if I paid a little more attention, things could have turned out differently and Hunt would not have suffered the way he did.  I waited until the last minute to accompany Hunt to this appointment just to be told that he had cancerous tumors in the liver.

Dr. Cohen said he would quickly send Hunt to UCSF where Kaiser has a contract for liver transplant patients.  One with a sound mind would wonder why Hunt’s case was still being handled by Dr. Cohen of Gastroenterology Department but not by the Oncology Department by then.  But Hunt couldn’t hold his tear back and we for a moment, let our emotion out of control.  All I could murmur at that time was to ask Dr. Cohen to contact the liver transplant board at Kaiser and keep us informed about the process.  We left Dr. Cohen’s office in a state of confusion.

Hunts Notes:

My wife has nothing to feel guilty about. We all do the best we can, when we can, and she has most certainly been the driving force of my team. And lately I wouldn't have made it this far without her. My undying love went immortal.

#8 Liver Biopsy on March 31, 2010 and Two Passover Seders

This is my wife's posting...

It was around Passover.  I received an email from Roberta, my “older buddy,” as she called herself, at Concord Mental Health, asking “Remember our date?” and inviting Hunt and me to her Seder on March 30^th which was the second day of Passover.  Back to Passover the year before, Roberta and I happened to sit together in the lunch room and I told her about my experience with Passover since I joined the Austin family.  Then we set a date for next year Passover at Roberta’s place.

Hunt’s cousin Nicole and her family flew out from the East coast to visit this part of the family living in San Francisco and around the Bay Area.  Hunt and I were looking forward to seeing Nicole and her family and also joining her Seder.  Family, friends, Passover, the pain and the fact ... a liver biopsy and the possible diagnosis.  Hunt had not had a good night sleep for a long time since the pain started in early February.  He was not in good shape and we didn’t want to socialize or to be in public at all.  Despite of the fact, we decided to go to both Seders.

Roberta’s Seder took place  on Tuesday night, the night before the biopsy.  It was very unique Seder as the table was surround by a group of close friends and family and led by Roberta, an English major grad, and a friend of hers. They read from five different Haggadah's!  Hunt and I asked for a leaving early excuse and we left the Seder with high spirits.  Thanks Roberta for having us that night.

The biopsy went well the next day.  Despite Hunt's snarl. Then Friday came and Hunt felt better as he recovered from the procedure so we went to cousins Craig and Sharon’s house for the second Seder with Nicole’s family.  Hunt’s mother Barbra, sister Alex and sister-in-law Jessie and their son Amir were also there.  The food was great, the play about the story of Passover was fun, and the Seder was remarkable.  We sent our love to Auntie Rhoda and Uncle Stan who live in Massachusetts and couldn’t join the Seder with us but we Skyped them in.   At the end of the Seder we said together, as we had done last year and the year before, as we will do next year and the years to come, “Next year in Jerusalem!”

Next year for a healthier Hunt, for sure.

#7 A Chain of Tests Done Before Liver Biopsy (March 05, 2010)

As I’ve mentioned in post #6, Dr. Streett at Kaiser in Vallejo had ordered an ultrasound of the liver and upper abdomen to better evaluate my abdominal pain. Finally, some real tests, that led to other more real tests, that led to a world of information I never wanted to have in my head, and a carcinoma invasion of my liver. You don't have to be a doctor to get the gist of these reports.

Below are the tests results:

Ultrasound - Echo, Hepatic, B-Scan/RL TM-LTD on 03/05/2010

History: 54y male CAC infection, mildly elevated LFTs and question of varices in the gastric cardia.  None noted in esophagus. Evaluate for portal hypertension, splenic vein thrombosis

Technique: Real time and static gray scale sonography with Doppler

Findings: ... The liver is markedly heterogeneous, with focal echogenic areas as cystic spaces, raising the possibility of metastatic disease, and there may be a small hemangioma in the left lobe. ...

Impression: Thrombosed portal venous system with associated varices and markedly heterogeneous liver suspicious for metastatic disease. Enlarged/prominent spleen measuring 15mm.

Alert Notification: Report called to on-call MD

CT Scan Abdomen on 03/05/2010

History: 54 y o m ultrasound shows suspected cirrhosis with pvt, but also possible mets in the liver. CT liver mass protocol recommended to assess for cancer in the liver.

Technique: Multiphasic contrast-enhanced hepatic Ct (100 mL of Omnipaque 240) with IV and oral contrast.

Findings: The examination is severely limited for the purpose of hepatic mass evaluation due to insufficient amount of contrast visualized in the vessels in all phases (nearly equivalent to noncontrast CT.)....

Impression: Severely limited examination as discussed above.  Recommend repeat multiphasic hepatic CT or MRI if indicated. Hepatomegaly and varices.  Likely cirrhosis. Heterogeneous hepatic parenchyma with multiple areas of subtle hypodensity (more prominent in the left lobe.) Differential diagnosis as discussed above. Portal vein thrombosis. Nonspecific nodular appearance of the gallbladder wall.

CT Scan of The Liver 03/10/2010

History: Liver mets, hepatoma

Comparison: Comparison is made to prior study of 3/5/10

Technique: Serial axial images of the liver were obtained utilizing a liver mass protocol. ...

Impression: Findings consistent with cirrhosis. There is accompanying right, left and main portal vein thrombosis.  There are some mild accompanying varices.

Vague areas of enhancement within the liver. Given the additional findings, areas of malignancy cannot be excluded.  There are numerous scattered hypodensities throughout the liver.

Lymphadenopathy as noted above.

Mild contour irregularity within the wall of the gallbladder. Differential diagnosis given above.

Splenomegaly.

Up to this point, Dr. Cohen requested a liver biopsy for further evaluation.  And the biopsy was scheduled for March 31, 2010. A month away...seems a little long to me, and in retrospect, it begs the question of whether or not he consulted an oncologist with these results? But as you'll find out in the coming posts this guy has a particularly enormous sense of self-inflated worth; an ego you couldn't drown in the Pacific Ocean!

#6 Colonoscopy on February 24, 2010 & GI Complaint Filed

This was not my first Colonoscopy.  I had one three years ago at the VA in Martinez.  It was a breeze, they knocked me out with fentanyl and a muscle relaxer, and I woke up in what seemed like a few minutes feeling good and with a decent buzz. My wife was waiting to drive me home.  Hence this time at Kaiser both Ha and I thought it would be much the same, and I would be home within a couple of hours.  My mom, Barbra, volunteered to take Hunt to the appointment at Kaiser in Vallejo this time. 

Kaiser could learn a few things from the VA. I specifically asked to be knocked out this time again, so they gave me benadryl and a muscle relaxer. I began to worry. Well by the time they were half way through it they had to have three or four people hold me down while Dr. Streett tried to, what felt like, puncture my colon! Screaming, yelling stop to no avail...horrendous. When I finally left, my mom said she heard me yelling from the waiting room, but couldn't get past the front desk. Here's what my wife saw upon her return from work. "When I got home from work that day, I felt something going on since my mother-in-law was still at the house with Hunt.  As soon as Hunt saw me walk in, he broke into tears.  My husband is very sensitive and emotional. He told me he was awake during the procedure and at some point he was hurting.  He asked and then cried for them to stop as it hurt him so much but the doctor  wouldn’t stop.  She kept telling him “It’s almost done!” Hunt later described to me the pain so tremendous that he thought he would die then.  The incident has haunted him for a long period of time that my sister-in-law Alex noticed once she went to an appointment with Hunt.  She told me “his hands started shaking as soon as we [Alex and Hunt] pulled into Kaiser parking lot.”

As a matter of fact, Hunt has filed a complaint with an attempt to prevent the same situation happen to other patients. Below you find Hunt’s six-page letter to Kaiser Member Services.  Not to surprise, the Kaiser team found nothing wrong had happened."

      Discharge Summary:

     This is what I [Dr. Streett] found on your colonoscopy exam today:

The preparation was not ideal, with retained stool.

Your colon appears healthy and normal.

Hemorrhoids were noted.

Your next colon screening test can be considered in five years, because of sub-optimal prep.

Start taking a fiber supplement

     This is what I [Dr. Streett] found on your upper endoscopy exam today:

A prominent vein in the stomach was noted, and an ultrasound of the liver and upper abdomen has been requested to better evaluate this.

Your exam is otherwise normal.

Please do ordered blood tests to recheck your anemia.

A follow up appointment with Dr. Cohen [the Gastroenterologist] will be made.

Dr. Streett  noticed an abnormality in the stomach during the procedure and ordered an ultrasound of the liver. 


Following is my letter of complaint to member services: 

3/01/2010

To: Kaiser Member Services                                                                                                         

Re: Colonoscopy Mistreatment of 2/24/10

From: Hunter R. Austin

Below follows a letter that was dropped off at Member services Kaiser Vallejo. I’m sending it again, to you, because I received a letter from you on the 9^th of March about said grievance. Your stated that if I had anything to add  you would need it by the 12^th of March. Short notice? Sure seems like it. I’ve had to put a number of projects on hold to sit down and get this done. Again, a Kaiser inconvenience. So, to me, this is important enough to drop everything because my life feels like it’s at an impasse and I am clearly exhibiting mental, spiritual and physical changes since the day in question. 

Also, your letter states that I have “concern regarding your (my) dissatisfaction with the quality of care and service you (I) have received from Dr. Paul Rubin of the Kaiser Permanente Vallejo Medical Center Medicine Department.” While this is also true, it is a SEPARATE issue as stated in the Re: Colonoscopy Mistreatment of 2/24/10, at the very beginning of my letter. I want to keep it that way until the matter at hand is resolved. At which time I may file a separate grievance.  So here’s the original (with a few minor changes that I’ve since remembered) and also, below the original, what I’ve added since...

To whom it may concern,

            I had an experience at Kaiser Vallejo GI dept. yesterday(when I started to write this) 2/24/10 that was so painful, degrading, and horrifically unprofessional that, if I could afford it, I would change my health insurance today. As well as look into what my legal options are for this level of improper care. Also, judging by what Dr. Streett wrote in the “after visit summary” which was “The preparation was not ideal, with retained stool.” If that was the case then this procedure should have been postponed until the conditions WERE ideal. After all, since day one with Dr. Rubin (over a month ago, during which I’ve had extra pain on top of my chronic pain) one of my original complaining symptoms has remained, time and time again, including the morning of and before my procedure, “ It feels like there’s still stool stuck in there, or something blocking the stool from coming out.” Why would one of your doctors, after having read my chart before the procedure (unless they actually didn’t) continue with a test that, in order to get the optimum result, the entirety of the intestinal tract, colon, etc… needs to be as clean and clear as is possible? Also nowhere in the “after visit summary” does it mention my screaming, begging, and pleading to stop!

I got there at 8am, in pain, and I left, a few hours later, in worse pain. Then again (this has been recurring, on and off, for the last 3 weeks) the pain in my stomach woke me up at approx. 3:50am the next morning, and was so intense (9-10) I took a Percocet, and then another one twenty-five minutes later, and as I write this, the pain wavers between a 4 and 5…close to where it’s been for the last two-three weeks with little or no relief and my test appt.’s being spread out over that time instead of getting me in there and finding out what the heck is wrong! You can read my records and (hopefully it’s well documented) find out what’s been going on as I’m quite frustrated with the fact of how many times I’ve had to tell it and how many of the EXACT same questions have been asked by different Dr.,’s…sometimes even the same ones asking the same questions! I don’t expect perfection, but a modicum of professionalism would be nice. 

But the long and short of it is, four months ago I had a bad belly ache with nausea and constipation, that lasted overnight, during which there were a few (non-related?) bloody noses,  then went away. Same exact scenario happened around two and a half months ago.  A bit under a month ago, same thing, at which time I made an appt. with Dr. Rubin. During this time, pain and constipation, loss/fear of appetite, feeling bloated after just a few bites, extreme fatigue, and attacks of #9-10 pain occurring regularly and lasting from 45 min. to 3 hours during which time I tried to move my bowels for relief but was unsuccessful.  Dr. Rubin said it was blockage and gas and prescribed Rx’s to no avail. I ended up in the emergency room that following weekend. Monday I spoke with Rubin (after two unanswered emails) and told him I wanted to see a GI, and he said, “Oh, I completely agree with you.” Gee thanks doc. At this juncture I wondered whether My Dr. had been taking me seriously all this time, or was it the all too common and usual ego-laden, off the cuff diagnosis…next patient please, kind of thing.

So I saw Dr. Cohen, he was leaving for vacation, so he set me up with Dr. Streett. My Last Colonoscopy, about five years ago at the VA; I went in (after the fasting and go-lightly treatment) they sedated me and when I awoke I was fine, no discomfort during or after the procedure. When I asked the GI nurse at Kaiser about the sedation she said that most of the patients fall asleep, so I wasn’t that concerned. Although I had asked, clearly, to be completely sedated, instead I was given Benadryl. An allergy medicine that makes one drowsy. That is not sedation. 

My Colonoscopy at Kaiser felt like a real pretty-boys first night in jail with the Aryan brotherhood. I was held down on the bed while they rammed, twisted, pumped, and anything else painful that one can do with a fat tube in your anus was done. Let’s just hope I’m not the one in a hundred that’s had something punctured. Throughout the entire procedure I was told about twenty times “It’s almost over, it’s almost over, and it’s almost over…and stop moving, don’t tighten up, stay this way, don’t move your leg, and on and on.” I was screaming and yelling Stop!, Stop!, the whole time, to which their reply was always. “It’s almost over.” People in the pre-op, and waiting room (one of which was my mom to drive me home) heard everything. My mom was totally freaked out and started crying when we got to the car.

I understand now why the VA sedated me. Smart move. But during these last few days, at home and in pain, I spoke with friends and family, most of which have had these procedures, more than once, and they were flabbergasted with my story. All of their experiences, while not referred to as pleasurable, not one person had any pain during or after, and those who were sedated, upon arising, felt like nothing happened. Two of my friends were awake, and while they watched the procedure on the monitors said they experienced “little if any” discomfort.

I am still in constant pain at about a 2 to 4 level, even driving over bumps in the road is like a punch in the left side of my gut. I’ve had two attacks, one the morning after the procedure and another 45 minute or so attack yesterday, very early morning, and they always start with it feels like I have to move my bowels, but sometimes I do and other times I can’t, but even when I do have a bowel movement, it does not abate the pain. My energy level is so low that if I try to read I just end up falling asleep. It took me three days to finish this letter because I can’t seem to focus on anything except the traumatic experience Kaiser put me through. Even talking, or writing about it totally stresses me out, which as far as having had a heart attack a little over a year ago is certainly not good for me. Isn’t the first thing Doctors promise to do in the Hippocratic oath is “no harm,” what happened to that?

What to do now? I want a diagnosis before the end of the week. At this point I don’t care about protocol, scheduling, vacations, or anything else except my diagnosis. I have been in (more than usual) pain for a month, with about eight to ten horrendously painful lower left/center abdomen attacks. I cannot and will not put up with this any longer. I will make myself available today, and then again from Wednesday the 3^rd forward, for any tests that could result in a diagnosis.

Hunter R. Austin

OK, since then I‘ve been keeping notes on a regular basis-

I realized, after a couple, maybe less, days, what I had been so scared about. Before a colon/sigmoid-oscopy I was informed that there was a very low percentage chance of “something” (I don’t remember exactly what could be punctured, but the chance of death I do remember) being punctured that could result in death! This has been stressing me out ever since. Have you completely forgotten that I have a cardiac history as well, and that my heart attack and subsequent scares have been triggered by stress? Lately, I’ve woken up in the middle of night scared, like I know I had a bad dream, but I can’t remember what it was, and after a little while of being up I start to think about that ordeal y’all put me through, and I can feel my blood pressure going up. It’s like some kind of bad thing is happening to me and I have to take a Zanax to go back to sleep. I feel like you guys (Kaiser) only see one problem, and totally forget about the rest of the person. Like a horse with blinders.

I had my scheduled ultrasound on the 5^th and the tech performing the procedure said that it was imperative I get another CT scan immediately, and sent me to radiology to make an appt. What ensued there was first “take a number and have a seat” but after a few minutes I got up and went back to where they did the ultrasound and said that I thought this needed to be done right away and all I’m doing is waiting out there, at which point the receptionist came back and in hushed tones (I heard my last name mentioned a couple of times but not much else.) I can only imagine what was being said, which in and of itself puts a patient ill at ease. Then the receptionist asked me to follow her, and we went back out front, and (from what I could glean and from the questions I asked) there was over an hour of checking with Dr.’s back and forth, because my primary and my GI were both on vacation. 

I was then scheduled for a CT scan that day at 5pm, it was now 2:30. I asked the woman running the front desk/appts. AOC (whose attitude, by the way, couldn’t have been more laissez-faire) if  that was enough time for the contrast drink to have an effect. She said “I’m sure the doctors know what they’re doing.” Maybe in her experiences they did but not in mine. She also said that she was faxing or emailing (I didn’t quite hear which) my Rx right over to the new pharmacy right now and to hurry and go get it and start to drink it over the next two hours. I went right there, a five minute walk, and they had no idea what I was talking about. Again, mayhem ensued, telephone calls, record checking, repeatedly telling me there was no record of it, etc...after asking for the pharmacist a number of times and being told to “Just hold on a minute” and “Gimme a sec, I’m looking for it.” I ratcheted up my requests on an audible scale until I got the pharmacist involved. Finally at 3:05 the Pharmacist began to explain how this medication should be taken, which involved an overnight process. I told her (why didn’t she know this? Was a note in my records forgotten?) that my test was in two hours, at which point she gave me the Rx and said “Oh OK, is that going to be enough time?” I thought back to the receptionist saying “I’m sure the doctors know what they’re doing.”

After the CT scan I asked the tech how it looked,  was it clear, and readable? He assured me it looked great and that because of the urgency that someone would be contacting me immediately.  Friday, Saturday, and Sunday went by without a word from Kaiser. On Monday Kaiser called to tell me my Rx (an unrelated, online ordered Rx for pain) was ready and to come by and pick it up. 

The woman I spoke on the phone with said that she was from Dr. Rubin’s office, and that he was on vacation but the covering Dr. had approved my refill. I asked her if there was any word about the urgent CT scan I had done on Friday. No idea, we don’t handle that, and basically a go bleep yourself attitude, and I know nothing.  She didn’t say “Let me see if I can find out” but instead she told me that I needed to call that dept. or the advice nurse...not even an offer to connect me with the right person who might be able to help me. I know how I’ve been dealt with, and I make it a point to watch how your other patients are dealt with, I say dealt with for a reason, which is; a good 75% of the time there’s no “care” involved. So when I got my hard copy of the Rx I asked the front desk woman ( who has always been helpful as well as nice) at Dr. Rubin’s office if she could help and she said “let me check it out.” A half a minute later she asked me to have a seat and the covering (Rubin still on vacation) Dr. would like to speak with me. 20 minutes later a nurse, not a doctor, came out and said the CT was unreadable and I had to go down to GI dept. and get another scheduled! I had to go down there! There’s no way this nurse or the Dr. that “supposedly” deemed the CT scan, which the tech said looked great—unreadable, could call and get me another appt.?  I walked away laughing, which was a darned sight better than what I felt like doing, at that point. It feels like I’m in a war with Kaiser, a war to see who will outlast who, a war of wills. A war where it’s me against the bureaucratic behemoth that is Kaiser. 

I’d say a strong 25 to 30% (that I’ve come in contact with) of your staff, top to bottom, seem to be doing well in the criteria with which I use to judge. Unfortunately only 5% of them are doctors. And the two that I’ve had the most interaction with were sadly not part of that meager 5%. In fact Dr. Streett, although probably not a direct cause of any cardiac issues to come, I know has already had some kind of psychological effects with which I have no experience. It would be a presumptuous comparison to rape with a foreign object, but still in all, that’s where my brain takes me when I think about that morning. The way I was held down, how I begged for it to stop, and the pain, my god, that kind of non-medicated pain! In a hospital no less. I couldn’t look anyone in the eye afterward...not even my mom. I  felt so embarrassed, childlike, and emotionally out of control. It was like I was holding on to the edge of a cliff with my fingertips and I just couldn’t do it!

I also seem to be very short-tempered lately, and up-tight in general at home and at work. My wife has had to put up with these unwarranted outbursts, and has been very understanding and supportive, but I still feel like it’s only my problem and I have to deal with it alone. It’s too embarrassing to talk about what happened and how I feel. But I’m trying to put that aside for now because my anger outweighs everything else. And when I think about this possibly happening to someone else, someone not as strong as me, and the discussions my wife and I have about this situation, I KNOW I have to go through with it.

At work it’s like I’m self-sabotaging my business. I can’t help it; I’m not happy-and it shows,  usually I’m quite gregarious, and smiling, quick to make a joke and laugh, connect with people; all the things a good salesperson does. But now I just feel limp and wrung out, I watch the clock, and I find fault with everyone and everything. I don’t like my job anymore because there’s too many people near me. They just keep coming and coming with no end in sight.

3/7/10  This morning I feel nauseous and, at the same time, have to move my bowels. I don’t know which to do first. The pain level in my lower left abdomen is at a 4, and climbs to six when I start/try (very little still coming out and it still feels like something is stuck in there...same original symptoms I came to you with) to move my bowels, not ‘attack’ level, but enough to defocus my world from everything but the symptoms. Also not bad enough to take a Percocet (on top of the methadone) because then I’m looking at 4 or 5 hours of giddy incapacitation. It’s been over a month now with the most minimal amount of relief and maximum amount of stress. I blame this ALL on the colonoscopy ordeal.

Kaiser’s problem, as I keep being exposed to it (like a virus)is an inability to prioritize, and act swiftly on those priorities. Speaking of your priorities-I was called at 8:30 pm Monday night to reschedule yet another CT scan. The woman on the phone asked how next week looked for me. “Huh?” I said. “I thought this was an urgent priority.” “That’s the earliest we can take you sir,” she said.  I felt like crying, this short conversation had me on the verge of an emotional breakdown. My wife whispered “What about another Kaiser somewhere else?” So I asked the lady on the phone, and after a few seconds she asked if I was close to Vacaville. I said yes, and she asked, “How about tomorrow?” I said fine and made the appt. (Do all your patients have to do all the problem solving in every situation?) Well, here it is, Friday, and no word yet! 

And by the way, that tech also said the CT scan looked perfect! I did have to ask him to put gloves on during the execution of what I believe is called administering a “central line”...the number one reason and area for/of systemic infection likelihood. I may be wrong.

So, here it is Friday the 12^th and no word, no call, no nothing. Another depressing weekend of wondering what could be wrong with me.

I finally received a call on Mon March 15^th, from Dr. Cohen when he returned from vacation. He said the CT scan was in and he needed to see me asap. An appt. was set for 8:30am Wed the 17^th. At the appt. he explained that I needed a biopsy because the problems he sees either stem from something to do with Cirrhosis or Cancer. At this time I asked about all the lower to mid abdominal pain and how did that have anything to do with my liver. To the best of my understanding his answer was that they are unrelated and I need to keep taking fiber so there’s no more blockage...Although I haven’t had any severe attacks in a couple of weeks, there is still pain (probably would be a lot worse if weren’t on pain meds already) and other symptoms. But clearly, in Dr. Cohen’s words,  “This takes a back burner to the Liver issue.” Although I agree I don’t understand why both problems can’t be worked on simultaneously while giving priority to the Liver. Speaking of which, when I left the office Dr. Cohen said “someone” would be calling me to schedule an appt. for the biopsy, and if that hasn’t happened by Friday the 19^th, to call him on Monday the 22^nd.

Now this what I don’t understand, with all your modern technology, why can’t an appt. be made right then and there? Why does the ball always seem to land back in my court to follow-up and make sure things get done? It only seems that Kaiser Vallejo (in my limited experience) suffers from this follow through malady. Kaiser Martinez, and Dr. Yallagada, my new primary care location and doctor, said that I needed a Cardiologist appt. asap, and I was called later that day! Something which (the cardiologist appt.) Dr. Rubin neglected to do in the six or seven months that I saw him. Which actually surprised Dr. Yallagada because I had a heart attack Nov 11^th 2008 and should have been assigned a Cardiologist immediately. In fact, it took a month of constant asking, emails and hassling, to get Rubin to schedule my yearly treadmill test! And then he had the cheek to say something like “Well, if it’ll make you feel better, and less stressed than I guess we could do one. But it’s really not called for.” I had spoken with the Cardiologist, Dr. Weiland, the Cardio-Surgeon who did my stent and angioplasty, and he said the treadmill test was imperative! Also Dr. Yallagada couldn’t understand why I was still on Plavix, a medication usually stopped after the first year of the heart attack.

Developments:

I saw a therapist outside of Kaiser because I was getting worried about some issues that started shortly after my colonoscopy trauma.

If you have ANY questions please call-

Hunter Austin