Pico de Orizaba

Pico de Orizaba
Taken from Huatusco, Veracruz, the closest town to Margarita's family's ranch.

Tuesday, March 18, 2014

No poem, "None" Written in this blog in July 2011 but forgotten and deleted accidentally

No writing today
No drawing
No painting
No talky talk talk
No screaming at the sky
No crying out "why!" "why!" why!"
No creativity
No thinking
No drawn out sighs
No pain
No suffering
No one to blame
No me
No you
No one who says, "That's it!  We're through!"
None of this stuff
None of my telling you, "I've had enough"

No conventions
No honorable mentions
No Fame
No one remembering my name
No complaints
No restraints
No one I blame
No dreams
No schemes
No consciousness flowing upon streams.
No life
No strife
No wrists cut with a dull rusty knife
No accusations
No contemplations
No sub par
No liquor in MY coffee bar
No absurdity
No mediocrity
No seagulls soaring above the clouds
No memories
No fears
No no one who refuses to hear...
No love
No hate
No immediate gratification that must wait.
No pain
No gain
No repeating that word once again

Can you imagine being dead...? Would you subject yourself to a Dark Ages blood letting?

Can you imagine being dead...?  Not dying but dead...  I can.  It's not something new since I've always seen dead on the horizon...  Me laying on my bed, looking up at the ceiling or the sky or the light falling through the pyramid-shaped sky light.  Dead.  Not dying.  A strange crossing of life and death, since my spirit continues within my body and continue seeing through my eyes.  A strange paralysis.  But, dead.  Awaiting what?  I ask.  There must be something or someone I'm awaiting.  Or why continue within this useless body?   

But why?... Why bring this up today, Tuesday March 18th 2014? The day began well.  I scheduled new blood tests in the morning for tomorrow with the result being ready tomorrow afternoon.  We went to the Mexican equivalent of the IRS to declare our fiscal responsibilities for January and February and were told that they weren't yet ready for "us" until the end of May, which will certainly be pushed off indefinitely, since Hacienda isn't prepared for the fantasy changes they planned at the end of 2013.  I ran well in Parque Metropolitano, a slow 23.5 minutes.  But 23.5 minutes at that... accompanied by 18 minutes of a brisk walk... I felt fine.  And went to Costco and replaced my 4 tires to my pick-up and while waiting for the tires to be placed, Margarita and I discovered that Costco had all the clothing both of us needed for the following months after so many months of finding nothing for us...  And I felt fine and normal.  And then I went to the bathroom and in the bathroom I was surprised by a descent amount of blood in the toilet.  I would have spent more time looking or anylizing that blood.  But, the Costco toilets automatically flush... And my mood changed.  And I wondered how I would address the topic with Margarita.  This wasn't the first time I saw blood.  It may be 3 times since December.  But, since the occurances were followed by nothing for a while... And I told Margarita about those occurances a while after having said to my brother-in-law Nicolas "I think I've found bleeding in my stool and you may need to plan for a day when I won't be managing the business..."  And of course it seems that Nicolas didn't respond much... Maybe he can't imagine my letting go of the reins or of taking my place, any of them...  But, the blood didn't appear the following bathroom visit or the following day those days.  But, this time it reappeared when we returned home...  And I don't feel the same as I had.  But that could be all in my head...  Imagining anemia...  and thinking about what Platelet Anisocytosis and Basophilia have to do with this blood...  If you remove Platelet from Anisocytosis, you find any form of anemia...  However, when you place platelets with anisocytosis, you find almost nothing... nothing urgent... which is strange why they would mention it on a blood test if you can't find ANY information about it...  But, we'll see tomorrow.  

And I've been dedicating my days thinking about diet and greatly diminishing carbohydrates and their connection with insulin intolerance and diabetes and metabolism and worrying about blood pressure...  And I know that the blood in the toilet has nothing to do with none of this... And I find myself thinking about what the Gastro Enterologist would have found in my small intestine had he done what I sought him for; an upper endoscopy.  Damn "top of the field" gastro enterologist... but top of the field for Mexico, which may be bottom rung of the ladder in modern medicine.  Damn former President of the Association of Gastro Enterologists of Mexico...  who knew my surgeon and was familiar with FAP/Gardners and had re-constructed an "American's" J-Pouch that constantly collapsed or something of that sort... "Poor guy was at his wit's end and thinking of committing suicide when he met me!"  However, why would the gastro-enterologist refuse doing an Upper Endoscopy on me if he was familiar with FAP/Gardners and knew that we must have those endoscopies every 2 years?  Margarita believes that the Mexican doctors want to push their patients to the danger zone, guarranteeing future surgeries...  Like the Cardiologist who prescribed me a pain reliever (a pain in my abdomin behind my stomach where the pancreas, spleen or possibly the kidney lays) banned in the U.S. due to high risk of causing Heart Attacks...  

And you may ask, "Why didn't you seek another GastroEnterologist?"  And I would respond, "I haven't been given much reason to trust my health to Mexican doctors/specialists.  Better is researching better diets for improving my digestive and general health and leaving things up to fate.  Afterall, I could be handing my life and savings on a silver platter to these irresponsible dudes, when we can save some money and possibly some accidents believing in more thoughtful and educated eating..."  However, I must accept the possibility of still finding myself at the end of the road.  Afterall, a lot of blood in the toilet doesn't help keep one optimistic, especially if that person has already had his colon and rectum removed...  What else can one do?

Can you imagine being dead?  Not dying but being dead... I guess I prefer imagining the state of permanent paralysis staring up at the ceiling or the sky or the pyramid-shaped sky light while laying upon my comfortable bed.  No, I don't think about dying.  It's not a comforting thought.  It just fills me with panic, since I don't have time or space for that process...  the process of dying... It's one thing to be ill.  It's another thing to not be able to do the work I have chosen since I met Margarita, my responsibilities that no one else here can or will do.  And that day that I become ill, I won't have the energy for explaining.  And, if I entered that now, I would lose the little energy I have for still trying to be strong, since as you may know, I don't have that vitality I once had... or I wouldn't have been concerned about hypothyroidism or Vitamin D deficiency or Adrenal Fatigue the past 1.5 years.  And this is how I ended up removing the carbohydrates from my diet... and why the blood in the toilet is just a bit discouraging, because it means that it may be something unrelated to the above three possibilities... a problem that diet can't change...  

There is a very intense plane between the moment one crosses the line of being healthy and knowing they aren't and death.  That plane is the process of dying.  And, yes, you may be living within that dying plane for many years.  I don't know if "they" would consider you fortunate or unfortunate.  And only you know that experience and how it feels...  But where the hell could the blood be coming from?  It's not dark.  So, it's not coming from my stomach.  And it isn't bright red, meaning that it's not coming from my J-Pouch... So it must be coming from my small intestine.  That same small intestine Dr. "I paid someone a hefty amount of money for my title since it is clear that I never truly learned how to be a doctor" gastro enterologist... And yes, that happens here frequently in Mexico.  It's called "Comprando Plazas"... (Buying Titles)... You've never heard of the wealthy people living in the Americas who paid a ton of money to various European Kings or Queens for giving them title of Duke or Count?  Well, here you can pay for being allowed into Medical School or for being given title of High School teacher, even if you didn't study in the University...  I know someone... In fact, he's on my friend's list, who paid someone to allow him to study medicine in the Social Security Hospital in Xalapa...  But, what he doesn't understand is that everytime a wealthy child pays the medical boards to ignore their poor educational habits and poor scores, they are robbing a space from someone who would truly make a good doctor, although that person may not have the economic means of bribing the Medical Boards...  

I've said this before and I will say this again, especially for those who don't understand Mexico:  Mexico continues as a feudal state within the Dark Ages of 15th-16th century Spain, although with a very modern style...  I guess I should let my body bleed itself instead of being subjected to the blood-letting priests and barbaristic doctors clothed in modern medicine and pharmaceuticals...    And you may ask, "but where do the wealthy go for medical care if there aren't good doctors there?"  The United States, Canada, France, Great Britain, possibly Spain...  Germany...  But I'm not wealthy...

Saturday, March 15, 2014

Possible Medical Mal-practice and Tumors in the Rectum; Letter to my sister.

Beth, I hope you respond to the following questions. After I write the questions I will explain the reason for asking: 

Thursday was a routine check-up/rectal exam? 

If so, how often did you have those exams? 

I guess I understand why you can't have your rectum relined; since the interior tissue could be in the process of developing cancer. However, that doesn't explain why you can't have a J-Pouch, since they remove the rectum and replace it with a portion of the Ilium. 

I don't know if you know how and why I ended up having my last surgery for the J-Pouch. It had nothing to do with a routine visit. I imagine it had been a good while since I had visited with a Gastroenterologist. I was leaving it all up to fate. Since I didn't believe in my future (have hope for it), since I always imagined I would die the age dad died. However, 

Somewhere around the summer of 2001, I started bleeding. Not a problem since I had always seen some bleeding in the toilet...  on and off since my colonoscopy in 1983. The difference was that this bleeding was accompanied by pain, excruciating pain, as if at the moment of trying or pushing on the toilet, my rectum would cramp, like a foot cramp. I remember finding myself sitting on the toilet in Joey's apartment in Spanish Harlem on the far east side and waiting for the pain to stop so I could continue and then leave the bathroom... And looking down, there was more blood than usual. But, I am sure I let it pass, since I was not in the position or interested in seeing doctors. However, this occurred again in my apartment in Brooklyn and I imagine it both scared me and Joey. She must have suggested my going to a hospital. We went to a hospital in Park Slope. Truthfully I don't know why we elected that one... They had us sit in the waiting room the whole night, 8 hours until someone looked at me in the morning. You have no idea how uncomfortable I was. There was no bench for laying upon... 

When they finally admitted me, Joey asked that they allow her to accompany me with the doctor who proceeded to look inside my rectum with a long white tube. He said that he was looking at a strange large mass, which he imagined caused the pain. Joey asked if she could look and he permitted her, which was great, since she seemed so interested and made some jokes lightening up the mood greatly. It was her interest and participation that inspired me to visit other doctors and eventually have the surgery. You were with Mom and I when I visited the gastroenterologist. I don't remember his name. But he mysteriously appeared in my hospital room in late January 2002 offering his services like a door-to-door saleman: since I was in the hospital for my ileostomy "take-down", why not allow him to remove the polyps that were in my small intestine? What polyps? And why didn't he mention them in September? But, what happened with that mass in my rectum? It wasn't a tumor? Gorstein said that I had a lot of polyps. But that they were non-malignant. So, I asked him the question that led to his famous response: "If I don't have cancer, is it necessary to have the surgery now?" and his response, "You are correct. It is possible that the polyps won't turn. BUT, the moment that one becomes malignant, it is TOO LATE!" So, we had the surgery... 

My question is how the gastroenterologist knew that I was in the hospital that "weekend" and if it is possible that the two make business for one and the other... If I didn't have cancer, why the mass and why the pain with such bleeding? Polyps bleed. But do they cause heavy bleeding accompanied by acute pain? Maybe Gorstein was about to perform an illegal surgery. Maybe I had cancer in the rectum and he wasn't supposed to construct a J-Pouch if I had cancer. The J-Pouch surgery is a much more lucrative process than the removal of rectum and the creation of a permanent Ileostomy... The surgery was supposed to take maximally 3 hours and wouldn't leave me with a temporary ileostomy. However, it took 6 hours supposedly due to complications that were never explained to me... and I ended up with the temporary ileostomy (which is standard proceedure for J-Pouch surgery; so he lied to me in order for convincing me)... and I ended up with the inability to impregnate anyone. I can enjoy sex. But, I can't impregnate Margarita. I wonder where else they were when they were THERE... Maybe they were removing "infected" tissue... Ross

The concept of Happiness verses the need for survival and comfort, Jail-breaks...



A certain writer, Marshall Goldsmith, wrote "The great Western disease is, 'I'll be happy when... When I get the money. When I get a BMW. When I get this job.' Well, the reality is, you never get to when. The only way to find happiness is to understand that happiness is not out there. It's in here. And happiness is not next week. It's now."

What if life isn't so simple? In some forms, fortunate is the person who does not know of the symbolic value of a BMW, although the probability is that person spends their lifetime struggling for earning enough money to cloth and feed their children or pay pending doctors fees etc...

"Happiness" is not a warm guitar... it may be a disney fairy tale... that we all absorbed into our hearts and minds... Why must you be happy? Truthfully, what does it mean to be happy? and versus what? Sad?

Without "the money" and "this job" what? Forget about the BMW. Before I had my last surgery, I asked Dr. Gorstein, "what's the urgency?" and he responded, "You have a point... However, the moment one of these polyps that are inflamed and bleeding converts to cancer, IT'S TOO LATE!" So, I had the surgery and live as I live the following 12 years. Can I say I'm happy with how I live connected with the J-Pouch? Absolutely not! Is it a nice way of living? No. Does it remove concerns about this "disease" and the future? Absolutely not. However, was enabled to outlive my father, who died at the age I had when I married Margarita... and now we are 11 years further down the road and all we accomplished together... But, believe it or not, this isn't about me and my last surgery. It is about my sister who didn't have that surgery, because supposedly she was Ok.

As you may know, Beth was diagnosed with a cancerous tumor in her rectum Thursday, a day after her 43rd birthday. No, you don't know her if you aren't her friend or her family or her co-worker... And if you learn about a 43-year-old actor or actress with this diagnosis, you automatically react as if it is a trajedy... And, I'm not writing this because I see it as a trajedy. It's part of life, no?

But...

I've spent almost 2 days responding to my own internal response, wondering... Wondering why I feel this way and what I should do or should be doing or will do...

Those who know me know me as a very rational person, maybe too rational for their likings. Those who know me also know me as an occasionally overly-emotional person; too emotional for their likings... Trajedy isn't the loss of happiness. Happiness in forms is a luxury constructed myth. The concepts of enjoyment, satisfaction, being content do not lose their values with turning on its head the concept of "happiness"...

I wonder what Dr. Gorstein would say to Beth. Would he say, "Sorry dear, but ITS JUST TOO LATE!" Or was he exaggerating when he said this to me, to obtain a lucrative contract for his services?

I guess I believed Dr. Gorstein. Afterall, I know of my father's history. His history was not only my history, but my future and the basic structure of my life. You don't understand? It's because you grew up with your most important role models, even if they may have divorced your mother or your father, even if they may have been alcoholics or...

I worked with "Orphans of the State", and what all fostercare workers know is that the child needs their parent, no matter what their parent does or doesn't do. And removing that child from their parent and placing them in fostercare services is just as traumatic as the abuse or neglect caused by their parent/parents.

This doesn't get shorter... And maybe one way for coping with what is happening with Beth is by not speaking about her...

I've lived in Mexico just over 11 years now. And would you believe that I haven't felt depression one day of those 11 years? Happiness? You've gotta be kidding. If you know what I/we have gone through over those years, aside from my own genetic-caused health problems, you would know that it is not about happiness. However, since my mother informed me about Beth's cancer (which is mine too; you may not understand this comment), I've noticed the signs of depression creeping and crawling within... And I wonder.

Wonder... Wonder... Wonder YOU (as a Mexican child may say in my in-laws' ranch)...

I knew about Beth a long time ago, before leaving for Mexico. And I wondered... So, this shouldn't come as a surprise. And it isn't about surprises anyway. It's about what we should do, should be doing, must do...

I must NOT become depressed... and why. What does it have to do with me? Before my mother informed me of Beth, everything was on track and fine, still moving forward successfully and constructively, responsibly, although with my own constantly increasing health concerns and the certainty (belief) that I will not reach the age of 60, due to our FAP/Gardners... However, with the notice about Beth, it seems that everything has begun collapsing like a house of cards... Exaggeration? In a way, in a metaphorical way. My main concern is this sense of hopelessness for the future, our future (the future of Margarita and I, the future of our business...) What does this have to do with the concept of "happiness"?

The only thing that Margarita and I truly have as displayed by my family over the past 9 years, is US. When my uncle died, when my great aunt died, when my aunt dies, when Beth dies, that didn't and won't change anything. However, just the news of Beth's cancer seems to create great risk of re-structuring my mind regarding our future; AND IT SHOULDN'T.

Happiness. No, necessity. Necessity is not spending thousands of dollars in travelling to the U.S. for someone's Bat Mitzvah, Illness or Death, repeatedly. It is for trying to "guarrantee" that we can live healthfully tomorrow. Spending those thousands of dollars when we aren't near owning our own house, when tomorrow another illness will appear on my horizon... when I may widow Margarita (and then what?) Devoting so much consideration, energy, time and money to people who wouldn't and didn't devote that to US? Consideration... Why must I be so much more considerate of their needs than of ours?

Oh, I'm sorry. My mother just asked me to remove comments responding to a comment by Jenny Jennings Foerst concerned that Beth didn't give me the right to talk about her illness, concerned that my cousin and aunt will learn about something that maybe Beth didn't tell them and that maybe this information will find its way to the ears of Beth's daughters... So, now I'm angry. Beth isn't on my friends list for historical reasons. But that doesn't remove the fact that we are connected in ways that most siblings aren't; we grew up very close together in the aftermath of my father's death and my mother's emotional detachment and emotional/physical abuse in the 70s... Beth and I were treated as twins, although I am 20 months older. Until the early 90s, Beth and I visited our GastroEnterologist/surgeon in NYC together. The disease and its horrors and complications, threats, discomforts and fears were shared. So, her rectal cancer is mine... Maybe you can't understand this if you've never been ill, if you've never had this hanging over your head... Maybe you can understand.

It's not about happiness. It's about survival and comfort and protecting who you must protect...




My mother wrote:

I just read this on Facebook. I am sorry that I kept interupting you. What you have written is obviously very important and I thank you for sharing your thoughts.

I responded:

I told Margarita about this (your concerns) and she began crying and explained that she understands how I feel because your mentioning Beth's cancer only brings to the for-front of her mind the reality that the same thing may occur with me at any given moment. And then what? She said, "back in Xalapa you wanted to eat what you wished, and ignored your health or FAP. And I said to myself, "well what can you do?" but that isn't the case these years and you inform yourself as much as possible and you eat as healthy as possible and still this can appear at any given time! If your mother doesn't want to know how this affects you, then she should have withheld the information about Beth and just cancelled the visit and left things at that..."




Eating que me de las ganas... (What I damn wish!), is not so much about being reckless; it's possibly about being defiant or rebelling against "the forces that be..." It's about trying to liberate oneself momentarily from concerns; the desire for the right to be normal, like all others. To be able to live and breath as others live and breath... momentarily stress-free. It's a momentary jail-break.




I MUST find a way of not allowing Beth's cancer indirectly/directly affect my health and our future. And one of these ways is be writing what I write. I can't change how you and yours think and behave regarding Margarita and I or regarding me... But I can try maintaining myself at a safe distance, which is my life in Mexico. I hope one day you can truly understand my side of our experience since 1973 and my point of view. But the clock is ticking and the probability is that I will find myself tomorrow as I find myself today: Incredibly alone with this, but with Margarita. And, I have really only the needs of one person to consider, those of Margarita: Not yours, not Beth's not Hannah's or Rachel's, not Aunt Anabel's.


My mother wrote:  Yes I can understand how vulnerable this all must make you (and Margarita) feel. I am sorry that I told you and will not mention Beth to you again. Given that you live so very far away it was wrong of me to involve you in Beth's life. I know it doesn't make any difference but I too have Many worries about my children.

This wasn't the life I asked for just as you didn't and it saddens me greatly that I was never able to protect my children and maybe my grandchildren. I must just be a bystander and try to be a supportive as I can be. And if we have to cancel our trip that saddens me too. I was so looking foward to seeing you and Margarita and spending some time in the sun. I hope if we can't come now that we will rescedule the trip. I do want Margarita to have her birthday present but I am not sure how best to send it.

I responded:  Of course it makes a difference Mom. And I am also very aware and concerned about what all this means for you concerning Beth and Aunt Annabel, something I've mentioned to Margarita during our walks...

we'll see what happens Monday. But, I told Margarita that the probability is a rapidly scheduled surgery, considering what Dr. Gorstein said. This is all part of my very own personal issue, since our gut reaction was that, if you and Bruce cancel your trip, we should too... The whole vacation (although originally planned for Margarita's birthday and not with others) became about spending it with you and Bruce and the enthusiasm that you and Bruce would find it relaxing and enjoyable... The dilemma is enduring the driving and 5 days of not cooking in order that I can use the ocean/water for relaxing me under the circumstances... Regarding my health, drastic changes in levels of stress is the biggest issues... But, removing myself from our daily rhythm and exercise routines, removing myself from home, is very stressful. However, I felt that it would be less stressful receiving you and Bruce on the coast than in Guadalajara; passing your visit here in Guadalajara would be way too stressful. However, making the visit to the coast after April would be too stressful due to the heat and humidity; by the end of May, the ocean temperature has risen too high for it to be refreshing...




My Mother: Thank you Ross. What all this means for me is that I am very sad but I know that I have to control my saddness because that won't be helpful to the people who need my support. Sometimes I hate when people refer to me as being VERY STRONG even if it is true. There are times that I just want to roll up in a ball and hide. Why life has to be so difficult I will never understand but I will still enjoy the hugs I get from Hannah and Rachel and the kind words that my children express. I probably will always be silly at times and I will enjoy the little things such as food, gardening and exhausting myself at the gym. But I will always have saddness in my heart. This hasn't and isn't an easy life watching being the bystander.

Again our messages are crossing. Lets see Monday brings but of course I am not hopeful. Well we can plan a different trip if the ocean is the place to be. Didn't you mention a train trip that you thought would be fun to do?

Ross: Yes... but you have always been more than a bystander... If you look back to your childhood, caring after Uncle Henry, caring after Granpa... And it doesn't really matter how helpless you may have felt (or feel)... It seems that there is an incredible continuum that is beyond conscious decision-making. Those who don't truly know you or your history would call you a saint, like they would call Mother Teresa... However, I don't believe it is about choosing to be better or more than the typical bystander, but is about the route into which you were born. And you must embrace that. You wouldn't understand anything other, and you would become ill if you didn't stand by, instead of being a common bystander, if you know what I mean. It is interesting that the same words have such different meanings when you change the order of their structures... Bystander is neutral and passive; Stand by is active and intentional or concern... The song, "Stand by your man" just entered my mind... but it is active and intentional...



I had mentioned that trip. But, then the region became very "unstable"... You would have to check with the U.S. Department of State travelling "Canyon de Cobre" and within the states of Sinaloa and Chihuahua

Thursday, March 13, 2014

What are the estimated cancer risks associated with FAP?

Colorectal cancer almost 100% if not treated

Small bowel (intestines) 4% to 12%

Hepatoblastoma (a type of liver cancer) 1.5%

Bile duct cancer small, but increased

Adrenal gland cancer small, but increased

Back to the constantly evolving medical history...

A day after I wrote the prior piece, my mother informed me that my younger sister Beth (I mentioned her yesterday) was just diagnosed with cancer of the rectum...  What can ya say?  Back when we were taken for the original check-ups at Memorial Sloan Kettering Cancer Center in 1982, when we entered into puberty, and were informed that we inherited my father's gene for FAP, the surgeon told us that with the removal of the colon we remove the problem...  Beth is 20 months younger than I and I imagine she had her surgery in 1984.  So, 30 years later we find that belief of the experts to be unfounded.  

About this time of my life in the early 80s, I entered into a major depression. Truthfully, I believe I entered into that depression with the death of my father, the emotional disappearance of my mother and the physical abuse by my father's brother (also FAP)...  I became very existentialist and firmly believed that I wouldn't live beyond my father's dying age.  (When I reached his age of a year before he became ill [32 years], I developed problems with my rectum, visited some specialists, and was informed that I must have my rectum removed immediately and replaced with the J-Pouch).  My mother would cope with my negativity by telling me that by the time I became of parenting age, science would have developed the ability of altering genes, so that I wouldn't have to worry about the guilt of putting my children through this...  Scientific wishful thinking...  I believe that my sister has been very responsible with her health as an adult and always on top of her check-ups (and much more optimistic than have been I).  I am sure that had there been another option for preventing her rectal cancer, such as gene altering, I'm sure she would have been all for that... and wouldn't be confronting the removal of her rectum and living with a permanent ileostomy bag...  If you don't know, Beth is a marathon runner...  So, I imagine she is very concerned about being able to run with an ileostomy bag...

I don't know what else to say... Stream of consciousness and existentialist or humanistic thought isn't flowing at the moment.  You would think this news would be inspirational for writing something profound.  But, I'm kind of at a loss for words.  

In a strange way, I see Beth as my twin sister, since we grew up very close (at least for the first 8 years or less)...  The was a time when we looked much alike...  We have very similar body structures and we both inherited my father's gene...  I "displayed" much much more aggressive polyposis in my colon and rectum than did Beth.  Her rectal polyps all but disappeared with the original surgery.  Mine didn't.  However, she developed Thyroid Cancer at the age of 26.  And now rectal cancer.  Granted, my rectal polyps became greatly inflamed in 2001 and began bleeding and cause great cramping at he moment of sitting on the toilet; excrutiating pain.  However, I was NEVER diagnosed with Cancer...  So, one can say that I've never truly been ill...  I wish we could have said that all of this was an illusion back in 1982, when they diagnosed me with FAP/Gardners...  I wish you could correctly acuse me of being hypochondriacal, inventing illnesses that didn't exist.  Truthfully, had it been up to me when I was informed I would have my colon removed in November of 1982 (the surgery was the following February), I would have told the doctors and my mother and uncle Henry to ignore the damn thing.  I became horribly angry and obnoxious...  I am sure I was experiencing a mix of extremely confused fear...  How can you fear what you don't know, have never experienced?  I guess it was a fear of being removed from what was normal...  I don't believe you can understand this if you've never experienced these types of abnormalities... like suddenly losing a parent at a very early age or living with disease hovering over your entire life or having organs removed or or or...  It's not nice living deformed and defective... And it's worse informing the normal people of why I don't belong within their circles.  But it's true.  And another truth is that I've never had cancer.  And had it been up to me, I wouldn't have had the surgeries...

However, had I not had the surgeries...

I guess you would be able to say that I had developed cancer of the colon or of the rectum and had died like my father, at the age of 34...  

But back to my younger sister Beth and at times feeling that we were twins...  That feeling appeared today during Margarita and my daily 5km walk (today we didn't run, we talked)... Often during my adult life in Mexico I feel as if I am looking with her eyes when she was a child...  It's a strange feeling.  But it isn't my stare... it's hers.  But it's mine...

I may have known how she felt or suffered when we were children.  But, we have our own suffering and detach from that of others...  Her new illness has hit me at my center.  But, I also feel strangely detached.  I don't know what that is.  I imagine it's what's always been.  I imagine it is a 4.5-year-old child's coping mechanism when their parent suddenly becomes ill and suddenly dies.  Death...

I can't imagine just how incredibly horrible my mother lived those months and then those years afterwards; but I imagine I intensely experienced her struggle... trauma.  I've always been a watcher, (as an adolescent and young adult I called myself a "people watcher") an observer and I would have spent a lot of time observing my mother, her change, absorbing her suffering.

Funerals.  How can a child live with death their whole life?  Death... It's impending...  Death... I guess we should just forget about it, ignore it...  

I don't want anyone to approach me with the information that they just lost someone.  Why not?  Because I don't know what to say.  It's over...  I love my statement of celebrating the life that person lived and shared with you...  But, I can't tell them that.  It would be considered insensitive.  Why mourn?    I guess I developed incredible coping skills with the death of my father...

I believe there are tons of reasons for the mourning of a loved one.  But, I don't feel that trajedy when confronted with that news of others.  I'm cold... distant... I would love to distance myself from the event... from their pain... because I will unintentionally offend them...  

What can I say?  I guess I dived into this afterall...



Wednesday, March 12, 2014

The Constantly Evolving Medical Histories; the Urgency for One Being Their Best Doctor

Hi Jess, I must say I am very impressed with how much you've accomplished under the circumstances; your incredible persevailance (forgive my spelling, I'm living in Mexico for 11 years now and seem to have lost much of my English spelling skills).  I stumbled across your blog a few days ago looking for a possible link between Alcohol and Apple Cider, believing for years that I had a strange allergy to both, although the reactions are occasional and widely spaced over the past 27 years, reactions that seem like the combination of a full body cramp, migraine and imminent heart attack.  I don't remember if I had breathing problems, nor do I remember if my BP dropped drastically, although I do remember that I must lay down...  I believe I've had this reaction in Mexico, or I wouldn't continue considering it.  My most memorable attack was at an anniversary party at the Spanish Institute in NYC after having drunk a lot of Piña Colada...  The moment after the attack passed, so did the sense that I had ingested alcohol.  The first time I had the attack was after drinking really good apple cider in New Jersey.  Over the years I imagined that the apple cider attacks were because the apple cider may have fermented a little, although it didn't taste that way.  

I really appreciate how you write.  I wish I could write so clearly.  

Let me tell you a little about me.  I grew up in New Jersey, studied in an alternative college in Amherst, Mass, spent my last 7 "American" years in New York City and now live in Mexico for 11 years.  My father was an Opthalmologist for 1 year before becoming ill with Liver Cancer that spread rapidly from his colon and died less than a year after "becoming" ill.  I was 4.5-years-old. It turns out that he was diagnosed with Familial Adenomatous Polyposis that my younger sister and I inherited.  At the age of 13 I was supposedly the youngest person to have their colon removed at Memorial Sloan Kettering Cancer Center in Manhattan (the same place where my father died).  Supposedly removing the colon removes the problem.  Of my paternal grandmother who died when my father was a boy (2 sons and 6 grandchildren), both her sons inherited FAP (my uncle was also type 1 diabetic), her oldest grandaughter (my cousin) died of a brain tumor at the age of 16 (I must have been 9-years-old), her oldest grandson (my cousin) also developed FAP/Gardners Syndrome along with a hormone problem (it has a very familiar name in endocrinology that slips my mind at the moment) that caused him to become very tall as a boy, my younger sister (who also developed thyroid cancer at the age of 26) and I were diagnosed with FAP/Gardners, only my older sister was born without the gene (7/8 or 88% inheritance rate, unlike the supposed 50/50% claimed by the experts, who also claimed 18-years-ago that Thyroid Carcinoma didn't fall under Gardners or FAP; they say that they are one in the same, I believe Gardners is an umbrella syndrome with FAP falling below it.  But, I'm not a scientist or doctor...)

What does all of this have to do with you or Celiac or Hystamines?

As a child I was diagnosed asthmatic.  However, somehow somewhere my mother was told I outgrew it after the age of 5.  I was very active as a child and loved the outdoors and sports.  However, I got winded very easily.  So, I didn't play basketball...  My nose was always clogged.  I supposedly was allergic to cats (grew up with them; my favorite was named "Dusty").  Long-grassy fields were paradises, but caused horrible bouts of sneezing and itchy eyes...  I've had horrible reactions to long-neck clams...

In Mexico I've had some horrible reactions to pine tree pollen that led to my tongue swelling, to bamboo dust and three allergic reactions to Salt Peter from water damage to the roof of the house where my wife and I live over the past year...  

Over the years I've had slight asthmatic attacks where I had difficulty breathing, and talking would cause coughing that did not produce phlemn (I would have relaxed some if I could have expectorated something) but doctors have dismissed them as seasonal allergies.

I'm jumping all over the place.  15 months before leaving for Mexico in 2003, I had my rectum removed and replaced with a J-Pouch.  So, I wouldn't know if what I eat causes diarhea, since not having a colon nor a true rectum creates a permanent state of diarhea...  

I've never had a sweet tooth (one cavity in my lifetime).  However, one of my passions over the past 25 years is international cuisine.  Not long after meeting my wife 11 years ago, I found myself with a great dilemma: how to make a life with her without money nor the right to work as an "American" in Mexico, as she wouldn't be able to enter the U.S. legally.  The magical response to the dilemma was baked goods; gourmet pizza, banana bread, coffee cakes, carrot cake, apple cake...  The wonderful thing about the food industry (especially the baking industry) is that if you have no money for more than your ingredients, you'll always have some form of bread and, of course, eggs.  The pizza business didn't work because we couldn't sell gourmet pizza at such low prices.  The cake/breads business didn't really work for the same reason, although we became famous for such high quality.  I eventually changed the breads/cakes to gourmet cupcakes filled (and topped) with 7 cream cheese mixtures and 5 jams... And then I became ill working 365 days per year 18 hour days...  Diet, stress, exhaustion, fear, struggling for making a life with Margarita against all odds...

In 2006 I was diagnosed with gastritis, high blood pressure, high cholesterol, two ulcers in my stomach, hiatal hernia, H-Pylori, gallstones (and what I didn't notice from the Upper Endoscopy--Duodonitis).  The GastroEnterologist suggested removal of the gallbladder.  But we didn't have money for that...  The internist gave me a diet for starving me to death and leeching any savings we may have had, since I could basically only eat salmon and chicken breast...  I got very ill again 8 months later and on the 23-year-anniversary of my father's death (he died on New Years Eve/Day 1974) I created my first New Years resolution in my life (I grew up without celebrating New Years); to stop seeing doctors and to stop taking medications.  I decided to investigate healthier forms of eating or natural ways of healing...  I succeeded in lowering my BP and my Cholesterol levels for at least 6 years and ridding the gastritis.

When Margarita and I began the baking business and married in June/July 2003, I weighed 72kgs/162pounds.  Four years later I had gained at least 28kgs/63 pounds.  In 2007 we left the baking industry for travelling around the country with our coffee bar (My father-in-law is a coffee farmer in the mountains of Veracruz); a client from Washington state had asked me why we didn't have an established bakery/café and why we don't sell/export my father-in-law's coffee. And after explaining the situation over a two week period, the client lent us a hefty amount of money for helping us improve the situation...  And I was freed from being immersed in baked goods.  Clients repeatedly ask why we don't compliment the coffee with baked goods and I respond that I can't sell mediocre baked products to a client and must bake it myself, which is the truth.  However, a greater truth is that I can't live/work with baked goods below my nose...  

Over the seven years with the travellin coffee bar, our economy has increased greatly.  And with the incredible rise in violence in Mexico, we removed half of our business travelling for protecting ourselves (especially my nerves), which has given us a lot of free time on our hands (8 months per year).  We established home in Guadalajara with a great park for walking/running and an incredible canyon for very steep hiking an hour to the bottom and a little more to the top...  

I don't eat street food, since I've gotten horribly ill from that opportunity...  I don't eat in restaurants, since I generally don't believe we have that economic luxury.  But, moreso because outside of New York City, it is way to risky that I will feel that I can cook the same dish so much better and for so much less.  As I said, my greatest passion is international cuisine.  In my kitchen, for so little cost, I cook Chinese, Thai, Vietnamese, Indian, Arabic, Caucasus/central-west Asian, Italian, North Africa and Pan-Latin American cuisine...  I don't shop in supermarkets such as Walmart if I don't have to, buying in (Centrales de Abastos) giant farmers market/depots (I've never known what they are called in English, although I know there was one north of NYC, although I would never have had the nerve to go, and because I didn't have a car) where the fruit and vegetables are fresher, higher quality and less expensive.  

Where am I going with this?  Hiking in the canyon for 2 months 2 hours per day, 5 days per week... or running 4 days per week, between 32 and 40 minutes (4-5kms/ 2.5-3.1miles) or run-walking or semi-speed walking for 50-120 minutes 6 days per week for 2 years now and I have dropped maximally 10kgs/22.5 pounds for a moment, basically maintaining a weight of between 92-95 kgs/207-214 pounds.  I don't eat junk food and very little baked goods/sweets/pastries...  I don't drink sodas or commercial juices or flavored drinks... I don't buy prepared foods, nor fast foods...  Until just before beginning the baking business with Margarta, I could drop all the weight I may have gained in a month by creating a 3 mile running routine.  It always worked.  And I believed in carb loading for running better.  In Brooklyn, I lived across the street from Prospect Park and would prepare what I called a super coffee (triple cappuccino/Puerto Rican style café con leche) and drink the big glass just before running...  When I exercised, I believed I could eat as much as I wished and anything I wished.

None of this works for me here in Mexico.

The long story gets longer and, of course I feel a bit ashamed putting this upon you and whoever else may find themselves reading this.  But, the problem is that there is absolutely no one here who has the time or the knowledge or the interest or the education level or...  Don't misunderstand me, I know you don't have the time, and I know that most of this is just one of those fantasies of "one-in-a-million" chance (like my having met Margarita or that client appearing "out-of-the-blue" in The Lakes of Xalapa, Veracruz with a big check or my awakening New Years morning in Catemaco, Veracruz 2007 with the magical idea of "healing myself"... I had never been interested in my health, nor in nutrition, nor in healthful living, nor...  And, of course, "talking to oneself" isn't all such a bad thing to do...  Writing that talking-to-myself helps organize thoughts and helps plan for the future and helps organize various realities.  

In October 2012, I was running 3.1 miles in 26 minutes 5 days per week (walk-running would come later).  My diet was wonderful (kale, cauliflower, bok choy, spinach, red cabbage, fresh ginger, fresh garlic, fresh turmeric, papaya, apples, guavas, chicken, fish, natural yogurt, lamb, beef liver, beef and all the rest of the typical vegetables etc).  In November I found myself becoming gradually fatigued until I couldn't reach 22 minutes before I developed horrible burning in my calves... And then I couldn't reach 7 minutes without that burning reaching my knees etc... It felt as if I were running with lead in my shoes...  At all other times I was feeling a pain near my stomach and felt that something was slipping out from below my right rib cage and imagined that my gallbladder was inflamed again...  So, I thought something could be seriously wrong.  I read that stomach ulcers don't cause pain and I wasn't experiencing gastritis with it's distention.

So, I decided to visit a GastroEnterologist for the first time in 6 years.  I told him my symptoms and shared with him my FAP/Gardners medical/family history and was surprised that he had met my ultimate surgeon.  I didn't remember the surgeon's name, but said that he supposedly was #1 in the world in J-Pouch surgeries and the doctor asked me if he was Dr. Gorstein and said that he had met my surgeon in a conference in Chicago.  The gastroEnterologist mentioned that he had been the director of the GastroEnterologist Society of Mexico and that he was very familiar with FAP...  However, with all that I told him, he said that he didn't believe it was necessary to give me an UpperEndoscopy, nor an abdominal ultrasound.  He focussed upon my high BP and suggested I visit a Cardiologist and that maybe the pain was hypertension in the Kidney that could lead to a heart attack or a stroke and prescribed my Vitamin B12 injections...  The one good thing that came out of the visit was his statement that since the Ileal part of the small intestine was converted into a J-Pouch, it no longer served for absorbing the Vitamin Bs, making all J-Pouchers vitamin B deficient and fatigued... I would learn months later that he was incorrect.  I left his office concerned and perplexed but now thinking about malabsorption problems and the lack of the Ileum, Colon and Rectum...  I made an appointment with a cardiologist and with a laboratory/clinic for an ultrasound and blood tests...  However, between the GastroEnterologist visit and the Laboratory, I investigated connections between vitamin/mineral deficiencies and high BP and/or muscle fatigue etc., and came across Vitamin D, potassium, connections between various vitamins and the B Vitamins etc...  The ultrasound revealed that I had rid myself of the gallstones and that my liver, gallbladder, kidneys, pancreas and spleen were normal along with their corresponding channels...  My B12 was over the roof (from just one injection), my potassium normal and my D was at 19...  If my potassium levels were high-normal and my sodium, glucose and cholesterol were low-normal, then why was my BP high? 

(My first 33 years were spent at sea level; my last 11 have been anywhere between the altitudes of 3,937 feet and 9,186 feet; Guadalajara is around 4,600 feet above sea level).  

So, I assumed that the issue with bone pain, skeletal muscle fatigue/pain and high BP was due to the vitamin D deficiency.  Since one cannot find adequate suppliments here in Mexico (there are pharmacies on every corner by the way) and what you find is 20 times more expensive than in the U.S. (GNC Mexico sells Vitamin D4 400uis 100 capsules for USD $10 while GNC U.S. sells Vitamin D3 5000ius 150 capsules for USD $5 if I am correct).  A friend of mine sent me 150 capsules of D3 10,000ius for I believe $12USD.  The equivalent bought here would have cost me 20 times more or $240USD... 

It's a year later...  

In my life in the U.S. I have never gotten the flu or strepthroat and the only time I had a fever was from a dirty I.V. needle after my J-Pouch surgery at Mount Sinai in NYC November 2001.  They also discharged me with that fever...  I guess the Medical Insurance Companies have more power/leaverage than does Federal Law...  

Over the past year I have developed colds/flu 3 times and very drawn out; none of the typical 3-4 day discomfort-inconvenience-nuisance and over the past 18 months 3 periods of extended allergic reactions due to mold spores or Salt Peter from water damage...  

Today I ran 20 minutes of the 41.5 minute 5km/3.1 mile run-walk...  8 months of the past 12 walking or run-walking 6 days/week and fatigue and no weight loss.

What makes things new and why I stumbled across you is that for the first time in my 12 year J-Pouch life, I sleep the night through without running to the bathroom at least two times per night for almost 2 months now... removing the Cortisol issue from the table and bringing up the question "if I sleep 7-hours per night and don't go to sleep late, nor awaken late in the morning, Why am I fatigued all day long?"  It isn't an issue of the adrenal glands... Plus, I found myself joking around about Alzheimers because I suddenly found myself with memory problems and a very foggy mind since December.  I'm an incredible driver*look at my comment below; I pride upon that.  I don't like driving at night, since I feel my night vision has decreased greatly, especially rainy nights or when the roads are damp... My vision has decreased greatly over the past year... Although supposedly I don't have vision problems... 

I decided to look up Hypothyroidism a year after putting the idea on the shelf since I had spent much of my life with sleep disturbances (insomnia until the age of 30 and J-pouch from 32-44) and replacing it with the idea of Cortisol Dumping in the Blood Stream that causes midsection weight-gain, fatigue, high blood pressure, repeated eating during the day...  What struck me now is the connection between Hypothyroidism, carpal tunnel/rheumatism/peripheral neuropathy symptoms,  memory problems, and constipation...  I've had a problem with my right shoulder to my finger tips for years now.  I've always blamed that as work-related damage (repetative-use) when we were in the baking business; carrying 50 pound boxes of bananas or apples or other things on my right shoulder and going from hot and cold--baking in the oven for hours to placing the finished cupcakes in large freezers...  But, the problem became worse this past January, without having used the right arm as much as usual...  

So, I visited with an Endocrinologist who only focussed upon my BP and my weight and said that if my BP doesn't drop with his diet and my exercise over the next month, he would prescribe medication.  My BP today was between 126/92 at 2pm, 138/88 after drinking a cup of coffee at 5pm and 144/105 at 8pm after writing all of this.  Margarita asked me why my face is flushed and I said it must be due to writing so much...  He sent me for blood tests, urine tests and a thyroid ultrasound, but for 3 days before the following appointment in one month, since it is clear that he believes the issue is BP and being overweight.  I am 5'6 and very stocky/muscular, big-boned; compare my wrist size or head size or foot size to other men my height... When I was around the puberty age, I was told by the school nurses that I weighed 5 pounds over the ideal weight for my height/age.

I was 14 or 15-years-old here
Minimally 10-years-old

Do you see a weight problem here?

I imagine I was 11-years-old 


 But I was a very skinny child.  I didn't start gaining weight until I started driving at the age of 17 and stopped travelling all over the world on my bike or by foot...  My mother struggled for years after my father's death.  We often didn't have adequate food in the pantry or she wasn't around since she went to community college, college and grad school right after my father's death...  She often sent me to school with rancid chicken roll sandwhiches on moldy bread.  I have a very sensative sense of taste and smell THANK GOD.  But touch or smell, I know when food is turning... when many others don't know it... Thanks Mom!  I couldn't eat that.  And often had to pass the school day without eating anything...  In 7th grade, the kids called me "poor boy"... In 8th grade I had my colon removed and had to return to the hospital to have scar tissue removed from strangling my small intestine (2 months in the hospital; the second time fed with an I.V. for 9 days --not even water passing my lips--, watching the fluids leave my stomach through the drainage tube after each hunger cramp, their color changes... yellow... green...) 

I've always joked that I could be dying from anorexia and they would accuse me of being over-weight...

So, I ignored the endocrinologist's diet and immediately made an appointment with the Clinic/lab for the following morning.  I was told that not even water could pass my lips for 8 hours before the tests.  J-Pouchers are constantly on the edge of dehydration or we live in a constant state of dehydration...  

I imagine that the lack of water for at least 10 hours before the tests negatively affect the results, which means I should retake them...

In any case, my HDL Cholesterol was surpisingly low and my LDL was almost high...  My glucose was surprisingly high for me at 117.  If I'm correct, my Triglycerides were the same as a year earlier 330+/-

I didn't see anything strange with my T3, T4 and the rest... The doctor who did the ultrasound said that all of my glands and my neck was normal, although there were comments written on the plates, that mean who knows what...

Aside from the cholesterol and glucose levels, what truly concerns me and why the endocrinologist was dead wrong for not wanting to see the results in the following days is this:

Basophilia and Platelet Anisocytosis...  High levels of Basophyl white blood cells and varying Platelet sizes...  So, I've been searching the internet for connections and possibly why I stumbled across you before mentioning gluten or Celiac or...

Basophilia-- problems with hystimine in the blood?  Swollen Spleen or Hyposplenism or Leukemia (since with FAP/Gardners anything is possible regarding cancer); which is why the doctor should have seen the results.  Basophilia could be connected with Diabetes, Thyroid disease, hyposplenism, rheumatism and cancers other than Leukemia...  Varying platelet sizes?  I haven't found that... But, what I find interesting is the connection between Celiac and Hyposplenism... And what I find interesting is the connection between hyposplenism and illness, since I had never gotten this type of ill before 2012...  Over the past year I've even worried about Lymphoma, since I occasionally found balls of pain around my armpit during times of flu-like symptoms...

In reading Chris Kressers blog, returning to read about hypothyroidism and celiac, I became intrigued with impressive weightloss by the removal of carbohydrates from the diet.  I was amazed that I had never stumbled across the idea that carbohydrates could be counter-productive for the creation of energy and weightloss...  

It's been a week since I've removed wheat, rice, corn and sugarcane products from my diet.  And visit your blog and that of Chris Kresser daily amidst my continued research on what the hell could be the issue or the risk or the possibilities, good and bad...  

If you reached this point, I applaud you and thank you for your consideration.  If not, I'm not surprised.  Afterall, most of personal human existence is spent alone, thinking and possibly talking to oneself.  And maybe there isn't a true answer or solution.  Afterall, why would one be born with an early self-destruct button within? if we weren't supposed to die this way, if we were supposed to understand something other than we must die young?  I have yet to "meet" a FAPer/Gardners Syndrome survivor of preventative surgeries, nor a study of us, who live beyond the age of 60... My lifeline says, 95-years... 

At this point in my medical experience, it may be more helpful to consult with a true Astrologer than with a certified medical specialist.  Would you believe that there is something in my astrological chart that says, "due to this combination, one or both of your parents will die during your childhood..."  But nothing and no one says that I carry this "disease" or that I will die young...

Ross

Monday, March 3, 2014

Solo Vivimos Una Vida, revisited... We only live one live... ¿Es Cierto? Written en Espanglish...

"Solo vivimos una vida..." ¿entonces? "We only live one life..." and then? 

You may not know that most of my thoughts are in Spanish and the ideas for writing begin in Spanish... which creates a dilemma for me, when considering writing a "piece" and sharing it with "you"... So, bare with me (and my spelling problems in English) and my Spanish, since it may be much easier for me at this moment to begin the piece in Spanish and then translate it for you...

"Solo vivimos una vida..." ¿Es cierto? O es solo una forma de decir... de no clarificar bien el sentido de la idea... Pero, ¿que pasa en la mente de la persona que organiza su vida (sus acciones) alrededor de ésta concepto?

"Solo vivimos una vida... y mejor lucharemos para la mejor vida posible mientras tenemos el tiempo y la energia... y no importa que pasa con las demás gente en el mundo. Solo tengo mi vida y si puedo hacer que sufro lo mínimo posible y construyo un futuro bueno para mis hijos (hijos puta como habla en Alvarado Veracruz Mexico) o mejor para mis nietos... ¿que importa que pasa en las vidas del vecino ajeno?"

Yes, esto es where I could go with this idea... But, I found myself thinking about la corrupción Mexicana y que significa para una a pareja chiquitita como Margarita y yo... ¿Como planear nuestra futuro, como vivir aldentro de un sistema clasista y corrupta que tiene sus raices bien enterrados en la conquista y inquisición Española... Mexico 2014 sigue siendo un Mexico feudal de la conquista o de antes de la "independencia" y la amada "revolución"... ¿que debo decir? Soy intelectual... soy una persona inquisitivo quien le gusta entender que madres está pasando y quien cree tantísimo en la justicia social y la verdad... Pero, existen muchas niveles de verdad y una es que tal vez no vivimos solo una vida... y tal vez, si fuera la verdad que solo vivimos una vida, pués ¿cuanto podemos hacer aldentro de nuestros limites politicos, sociales y economicas...? y de verás, ¿que debemos hacer? que podemos hacer cabrones? no, no lo confundes con la favorita palabra de activistas jovenes y idealistas quien todavia no tienen que pagar la vida... "APATIA" Pienso en la fotografia del estudiante activista Chino en Tianamen Square antes de estar aplastado por el tanque... ¿Esperas ésto para tú hermano, para tú amigo, para tú novio, para tú hijo? y para que fin?

So, I find myself crossing various important realities... like I cross from Spanish to English... In the face of what's happening here in Mexico and what has always happened and hoping that someone from "way up above" decides they want a different Mexico, truly respected in the eyes of the others... that they would bring the abusers to justice... in the name of true social, economic, educational and political justice... But think about it friends, if you know what is going on here and that has always gone on and that it has more to do with the lessons of the Spanish past of the Inquisition and imperialism and pre-Renaissance dark ages mentality which never encountered a true enlightenment... Imagine that the criticisms of the Spanish royalty and mentality by the Hapsburg empire continues to be heard against Mexico and much of Latin America 500 years later... And you may ask, "why the need to continue what Gabriel Garcia Marquez criticizes and what Mario Vargas Llosa and his son Alvaro criticize and what Carlos Fuentes criticized? and the list of Latin American writers continues into infinity..."

Would you believe that I could be killed for publishing this? And sometimes I imagine that "they" would understand that my so-called revolutionary movement is a movement of only one since it is a movement that implodes because the truth is that the reality is much more complex and much more simple than most activists and intellectuals wish to believe...

En esta vida estoy en la busqueda de la verdad... que puede ser mucho más grande que solo una vida o un mundo o bosque o un especie de animal y tal vez todo ésto tiene que pasar y todos los animales y especies y bosques y sociedades tienen que morir; parte del ciclo de la vida que empieza con nacer y que termina con morir... ¿quejarás de que tienes que morir?

Entonces, como gente con la mente abierta, gente quien cree en la justicia y la verdad, como gente pensativa y consciente y sensativa y sensible y sincera, de verdad, ¿que crees que debemos hacer? correr a alta velocidad hacia el muro, y como cabrones, chocar contra él con nuestras frentes?... Solo tenemos una vida y tenemos derecho decidir como morimos, si queremos morir aplastando nuestros craneos contra el muro...

No importa tanto que es la verdad si vivimos solo una vida o vivimos millónes de vidas... Que importa es que significa de verdad el comentario, "solo vivimos una vida..." Significa "licencia" de comportarse en un estilo egoista, hedonista, tal vez superficial, materialista...

Pensando como historiador social, como antropólogo, como sicólogo social, como sociologo, se que no existe NADA que puedo hacer para hacer cambios "revolucionarios" socio-politico, socio-economico, o ecologico...

¿Por qué no piensas en las realidades de poder, control y economias mundials, mercados internos y externos y el poder sicologico de consumismo?

¿Por qué no piensas en las realidades de las necesidades más importantes de la gente pobre y por qué ellos no pueden entrar intelectualmente o físicamente en revoluciónes y por qué es tan fácil manipularlas?

Hacen "uds" la broma que comen perros los "vietnamitas"... Pero no saben la porque... Pero, no preguntan uds si comieron sus perros los Griegos y los Italianos durante la invasion facista de los 40s... Preguntate hasta que punto las lleve la hambruna... ¿a comer carne podrida? a comer bebes recien nacidos? ¿no crees?

What was the true story movie about the olympic ski team who's plane crashed in what glacier topped mountains and found themselves eating the frozen flesh of their deceased ski team members?

Read, read, read and open your minds to other truths and realities and realize why maybe you should live for this life and not for the lives of others... Sounds terrible. But, in the end you live to live and not to die... And "the powers that be" understand this so well that they know how to control the ends...

I'm not telling you to stop your movements... You too are part of the world's destiny and everyone's experience... if you must die in a wood chipper, then that is your end and part of the great lesson. If I have just a little choice of how my life ends, I would hope that I could avoid dying in a wood chipper...

In "El Autoño de la Patriarca", Gabriel Garcia Marquez escribe de los "enemigos del estado" tirado a los tiburones... wood chipper, tiburones, heads crushed below the traction of tanques...

¿En cuantas situaciónes politicas hicieron acostarse en el suelo de la plaza principal los "enemigos del estado" y pasaron encima de sus cabezas con un tanque?

No me acusas de exagerar y ser mórbido... Puedo darte una lista de escritores premiados Nobel quien ofrecen las escenas horribles... Para empezar, leelo "Para quien doblan las campanas", de Ernest Hemingway... Leelo, "La Perla" de John Steinbeck, leelo "Balun Canan" de Rosario Castellanos... "La Buena Tierra" de Pearl S. Buck... "La Cabeza de Hidra" de Carlos Fuentes, "Inez de Alma Mia" de Isabel Allende... and then investigas las historias reales portrayed por los mismos autores para verificar de que se tratan sus novelas de "ficcion"...

Gotta end this, "they" cut my internet connection or disenabled part of my Norton Anti-virus for a moment...

"Dying in Your Sleep at a 'Ripe Old Age'", FAP, Adrenal Fatigue, Hypothyroidism, Gardners Syndrome, Diabetes, Alzheimers, Chinese Weevils, Alternative Medicine/Homeopathic Remedies...

--"My sister has metatastic lung cancer!"--

We went to Tlaquepaque yesterday (the last place in Guadalajara we took you and Bruce before you returned to New Jersey... And had a very nice time... We hadn't returned since your visit... While looking for a gift for Hannah, we ended up buying some gifts for ourselves like a hand-woven bed covering, two pillows and a spoon rest... We have a hand woven bed covering for Hannah if we decide upon it... Looking at the clothing, I decided that it is a bit risky, since she could feel foolish wearing something traditionally "Mexican"... I had close to a migraine yesterday and quickly lost interest in looking at clothing. But, I found that Tlaquepaque was so nice for strolling around on a Sunday afternoon that we have an excuse for returning... The only problem is with controlling the buying... since there are so many nice things...

Aunt Anabelle... It's been a very long time since she last smoked, no? You would think that she would have gotten breast cancer before lung cancer and then breast cancer moving to her lungs... I know many people fantasize about dying in their sleep of old age... But, truthfully, what is it that "should" bring us to the end? I often imagine how a heart attack feels, since that is a prevalent way of dying... don't like images of dying in a car accident... Various people "around us" have become ill with cancer and died and I wonder about that experience... and if I were diagnosed with cancer and vehemently claim that I will NOT accept Chemotherapy/radiation therapy as a waste of money since the end is clear... But, how is that experience? 


A car accident is horribly violent and morbid, but may be a very easy way of going... And a heart attack seems violent for a moment...

Of course these are just ponderings and probably seemingly insensative towards your concerns about Aunt Annabel... Maybe I would have a different form of relating to these things had I not experienced dad's death at such an early age and then have it so close to me as my probable exit from this life...; it's to say having death as a very personal life experience...

When was she diagnosed? 

I know that your concern about her metastic lung cancer means that it is a much more definitely grave situation, or that you see it as hopeless... But, I guess I would mainly worry about how uncomfortable having lung cancer would be... I guess she's had surgeries...

--"I am glad that you had a pleasant day. Saturday Bruce and I went shopping for Margarita and we had a nice time roaming around Peddlers Village. But it was very cold though and we had to duck into a bistro for hot soup!"--

Sounds very nice! I imagine Peddler's Village is much nicer than Tlaquepaque. I forgot that you are still in Winter over there... Here, with spring-like soon to become summer-like weather... I forget how it may be away from here...

I've lived most of my life with death hanging over my head... I believe that is a strange reality for those with FAP since we aren't living just for living, but living worried about imminent illness and dying and living for preventing death... It must create a very strange psychology in the "eyes" of those who don't live with this experience... Truthfully, I believe that we should be excluded from funerals or conversations about the loss of others if people don't want our extremely unique or alternative perspectives... In most of the movies and books I've read with characters being Holocaust survivors (usually parents of main characters), the Holocaust survivors show a very heavy/negative personality, almost anti-social and probably psychologically destructive for their children...(although they, the parents, are being "protective). We must try understanding them and others with PTSD. But, understanding will not make it that much easier living with them... I feel the same way thinking of how I respond to you or others... I can't be more socially-acceptably sensitive within this situation because it is almost impossible for me to feel as you feel...

--"Oops there we go again crossing comments. No Aunt Annabelle didn't have surgery because the lung tumor is inoperable. She has been quite a fighter and has and is getting chemo. Her bone Ca. Has been treated with radiation. She attempts to walk 3 mi a day and otherwise take good care of herself. Unfortunately her anxiety sometimes get the best of her. I speak with her everyday just to give her some support. After all we only have each other! "And then there was one!" But we try to enjoy the moment and not look to far into the future!"--

Imagine, you have a friend who is very ill with breast cancer and another friend or family member dies of cancer... I don't believe you will approach the friend with breast cancer with your pain and loss... And I don't know if you can understand my relationship with death and the future and it doesn't matter what you say about Beth's experience or that of Seth... Beth grew up with and still has her most important role model and Seth grew up with his... I didn't. As I've written many times, my role model was death and the black hole that Dad left for me... This is not meant as an argument with you... It's not a criticism. But, thinking about interpersonal relations and certain conflicts and histories in our family connected with me, it would have been nice if people could have understood where I was left or with what I was left when MY FATHER died... Sheri and Beth had you...

So it metastecized to her bones? 

What was her Italian Boyfriend's name? 

Is he still in the picture?

And when you find yourself with "and then there was one"? But, you have Beth and your granddaughters nearby. I consider you incredibly fortunate...

The day of Margarita's grandmother Angelina's funeral, someone asked me if the reason Margarita and I don't have children is a problem with Margarita or originates with me... And I said calmly, "it originates with me..." And he slid into a history of a wealthy boss who couldn't impregnate his wife and paid his driver to have sex with and impregnate his wife... and suggested that I find someone to have sex with Margarita so that I could have a child for when I need someone to care for me...


--"I guess you must mean Ed. Yes they live together in Toms River and he is extremely supportive but she relies on me a lot. Without having Uncle Henry I guess I am the next best thing!"--

of course! and you know it!

--"That is pretty amusing about hiring a a sperm donor (in a sad kind of way). Well nobody has any guarantee that their children will care for them in old age! Unless your family is so poor that they cant move away."--

And of course I live with a bit of guilt of not being able to impregnate Margarita... and as I said to you about Beth and Seth, it doesn't really matter what Margarita thinks or feels about this... because one day I will not be here and the probability is that that day I will have left Margarita widowed and without children... She turns 39-years-old on Friday... One can easily say, "it is not fair that you didn't give her that opportunity..." and it doesn't really matter what it is I have given her that no one else would have given her... People don't think that openely and complexely... It's like telling a mourner to stop thinking about the loss of but about the life they shared with the person who left... We don't live that way...

No, there are no guarantees and in some way or another you've gotta do the best for yourself and those closest to you; try making the best possible decisions. And that's why I mentioned selfishness and egoism yesterday... If one thinks clearly about what that truly means, they would understand that only fools would live selflessly... You can't live any other way but what you believe is healthiest for you and those you affect directly...

--"Even the selfless get something from their acts but when a person takes somethong from another just to take care of themselves that is a problem."--

We can send Hannah a gift... But, we can't be there... We can send her a gift... But, we can't send her our love because we haven't been there... we don't know her, we can't feel her... and the years have passed and they pass and the next thing you know she's in college and is becoming an adult and we weren't there because we couldn't be there... and, her mother decided against bringing her here for a moment (why? no one will answer that question and Beth won't apologize and explain what happened), but that also affects our relationship or lack there of with Hannah... And it's cool. Knowing that she has an uncle disappeared in Mexico could be helpful or interesting for her personal development or imagination or not... Everyone makes their decisions... It turns out that my decision and decisions over the last 11 years have been the best I've ever made for myself and have helped incredibly Margarita and her family, although Hannah lost the "opportunity" to have me as an uncle...

The irony is that selflessness is also selfishness... it is a strange form of delusion... Your comment about "taking from one in order to help yourself" automatically makes me think of Uncle Stan and the social security payment given you when Dad died... But, you've gotta understand Mom the difference between how we grew up and how Seth and Elise and even Hannah and Rachel grew up or are growing up... Privilege (or lack there of) is the first thing that is noticed and separates us in grade school... Todd Golub had everyone call me "poor boy"... and for years I didn't want to bring friends to 784 Old York Road... How does that affect the development of a child? I am sure those $40,000USD would have helped us much more than they would have helped Seth and Elise... At the very least they had their father who could develop his dental practice... and send them to private schools etc... at least Esta had her husband who would develop his dental practice, enabling her to leave her young teaching career behind to help him with his dental practice... But you are incredibly forgiving... But, possibly to a point of negligence of who truly deserved your consideration...

--"Yes Hannah and Rachel are missing not knowing you and Margarita but they do know that they have an Uncle in Mexico and they do ask about you. I also have pictures around of the two of you and show them pics from vacations. Who knows maybe someday Hannah will want to visit."--

We only have so much time... you can try and understand while you have the opportunity or you can ignore it... But, the problem is that you will mention my visiting New Jersey later on... and maybe with increased frequency and my concern is the confrontations with those who don't understand the difference...
I understand your concern about being alone... I understood your concern when Sheri moved to Australia... But, your concern will increase over time, although the conflicts I have with various family members and their lack of true understanding will not change over time... And I can't place myself there... And I don't believe you truly understand the risk for me... And you've given me much reason to believe that you don't truly give a damn. And that's cool... It's good to keep people in perspective. But, I don't know if that's how you wish for me to see you.

It's a very big "who knows?" and I believe my time line is much different from that of yours and Bruce's and Aunt Anabel and Marcia and her decease husband and Mary Beth and Ed and Aunt Jo (who died at that age of 94) and all the rest of the people who made it to retirement age or have little reason to believe they won't reach that age and who have the luxury of imagining dying in their sleep from old age... Ya see how the conversation never truly disconnected itself from your concern or pain regarding Aunt Anabel's illness and impending death?

I turn 45-years-old in June (as if you didn't know)... And have found myself "joking" about Alzheimers these past few months, because I suddenly have found my memory failing... "what was it that I was supposed to do last Monday...?" Still don't know... I have what seems like worsening Carpal Tunnel syndrome... in my right arm, although the pain seems to actually originate in my shoulder/back... the outer side of my eyebrows have all but disappeared over the past few years and I find myself with mental fogginess lately... And suddenly I learn that all of that could be due to Hypothyroidism, although it doesn't seem that the Endocrinologist found any of these signs/symptoms interesting...

--"Ok I am starting to loose the content of this conversation. Consequently I am afraid and think I have already said or not said something that is upsetting you. I can't type as fast as you and I also seem to respond to the wrong thing or in the wrong way. I am not asking you to take care of me but only yourself and your wife which you are doing and I am very happy about that. Self sufficiency is something I pride myself in as you should to. Although I wish we could continue this communication I have a patient to see in a few moments."--

Green Coffee suposedly blocks the absorption of fat in the small intestine, forcing the body to burn it's own fat... and supposedly blocks the absorption of glucose forcing the liver to release its own for increasing energy... Chinese Weevils supposedly strengthen the immune system and lead to the disappearance of tumors... increase energy levels, increase mental clarity and decrease symptoms in Diabetes... My mother-in-law is ingesting them and she sent some here in Guadalajara... And, SURPRISE, I'm taking them too... Sounds disgusting... Raw Oysters on the Half Shell sound disgusting too... but they don't have case histories showing that Raw Oysters on the Half Shell reduces cancer or diabetes symptoms... But the Weevils do...
Laboratory findings in Israel found that Lemon Grass causes entropy in Cancer cells...
Cinnamon decrease diabetes symptoms, helps lower BP and helps decrease weight because it causes the slowing of the emptying of the stomach, subsequently slowing the entrance of glucose in the small intestine...
We've placed chia in our daily diets... along with the green coffee, a little bit of lemon grass... chlorophyll... some cinnamon... some cardamom... the Chinese Weevils... I can't enter the Ketonetic Diet since I can't imagine ingesting so much fat, nor how... And I haven't read anything explaining how you prevent cardiology problems due to the massive increase of bad cholesterol in the blood stream...

But... you may ask me why mention all of this... It's because; "I have one wish before I die: To have been able to lowered the weight and feel more energetic and lighter before what "is Killing me" kills me..." It's to say, if there is a way to reverse some processes in a healthful and affordable manner that I can manage and understand at home... why not? I wouldn't be semi-immersed in this if there wasn't an existent problem/concern...

Everything is connected with FAP. However, the problem with FAP is that we are a very small case group that receives much less attention and funding than does IBD, Crohns, typical Colon Cancer... The only new information about what can happen with FAP you can find is with talking to the older FAP sufferers or their wives, children, their survivors... But, what they tell you has occurred and can occur directly related with FAP, is not mentioned in ANY of the scientific literature... I remember someone mentioning the risk of hypothyroidism... But, I don't have the time or energy for searching for those conversations... I would need a ton of money for searching through FAP specialists until I found one I believed truly understood the complexity and wide range of risks connected with FAP/Gardners...

I have yet to find a person who can tell me if, with all of the preventative surgeries, there exist FAP survivors above the age of 60... I'm sure there exist some. However, I would love to see the stats... But, I can almost assure you that those stats don't exist...

And why write YOU so much? Because, you can imagine that there is no one in my world I can talk with about this stuff... Can I talk with you about this stuff? This isn't really a discussion... It's a rambling down the list...

Entropy. Massive Entropy... The Endocrinologist said he was familiar with FAP... But, he had no interest (certainly due to lack of time) for the conversation... And if he is not an endocrinologist specialist in FAP (why should they be specialists in FAP?), what would he know about the possible connection between FAP and hypothyroidism? Over-stressing the adrenal gland caused by extreme stress and/or interrupted sleep (going to the bathroom every 2-3 hours at night) causes the dumping of Cortisol into the blood stream, causing the blocking of insulin in the cells, causing the blocking of the T3 Hormone produced by the Thyroids (mimicking hypothyroidism) in the cells, causing mid-section weight gain, causing the narrowing of the arteries, which increases BP... This is why I stopped seeing the Cardiologist because he ignored the issue of FAP, possible Adrenal Gland fatigue caused by interrupted sleep and above normal stress... However, talking to an Endocrinologist about the Adrenal Gland is the same as talking to them about the Pancreas or the Thyroids... However, I forgot about that issue and because he wouldn't have had time... It is much more affective for an Endocrinologist short on time to focus on the sure thing (especially with Mexico being #1 in Diabetes and Childhood/Adulthood Obesity in the world): Diabetes, especially if I enter his office overweight and with high BP... Why waste time on a rarity: AND THAT IS THE SAME ISSUE FOR Familial Adenamatous Polyposis... Who wastes their time and money on such a rarity?

Oh! and another possible reason I may not have meantioned Adrenal Fatigue and cortisol possibly mimicking Hypothyroidism is because over the past month and a half I have found myself sleeping through the night without going to the bathroom for the first time in at least 13 years... and experiencing something more like constipation than diarhea... Another symptom of hypothyroidism is constipation and fatigue although the person sleeps well... You would think that a sudden and prolonged experience of uninterrupted sleep would be accompanied by increased energy levels and lack of foggy mind and improved memory... I've never had memory problems and less-so, foggy mind... And, just incase you are wondering, I don't over-sleep..., which would also cause fogginess... I don't drink a lot of coffee and I walk-run 3 miles a day... I eat very little-to none fried foods, I drink one cup of unsweetened coffee in the morning, very very little sweets during the day... a 3/4 liter of fresh-squeezed orange juice with the Chinese Weevils at night and if I have a sweets craving, I occasionally prepare a fruit smoothy sweetened with honey...or I prepare a cup of coffee with milk and sugar in the afternoon... I've never been a sweet-tooth... I get enough sugar from carrots and onions or cabbage in what I saute or with the red peppers I roast or eat raw (occasionally).. Later you will see the blood-sugar (glucose) test results... 

Prevent cancer, prevent diabetes, prevent heart disease, prevent alzheimers, lower weight, increase energy, increase happiness-satisfaction in interpersonal relationship, increase economy, increase faith in the future... although people are dying around us... although we are constantly reminded that the end is near or our finding ourselves alone is near... My concern is about quality of life and security knowing that the end hovers over me and is near... Find me the statistics that show that FAPers don't tend towards dying before the age of 60, no matter what preventative surgeries they have or diets and exercise routines they maintain... I would love to see those stats.

I know you don't have time to read all of this... I will copy all I wrote and post it on my Blog... for if you wish to consult it one day... I'm not writing sarcastically. I also have "better things" to be doing with my time at this moment...

--"Just a quick note.....look up atkins diet. There isn't any magic bullet for weight loss. Ckeck out weight watchers if you want to, it is in your town."--

--"I didn't think you were maintaing your blog so I may have deleted it. How do ivget there again?"--

Yes, I noticed Atkins Diet when I looked up the Ketonegic Diet... it's a 1:1 fat protein ratio instead of 4:1 fat/protein ratio... The problem is with removing tortillas from Margarita's diet... I have started using Romain Lettuce in place of tortillas, believe it or not... It's actually very interesting. I am sure it is so NOT NEW for you when you were eating tuna or chicken salad without bread in many of your diets... or during Passover... although you did eat Matzoh, which is a No-No.

I'll connect you with it when I finish copying what I wrote...