#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.