Category Archives: phase two

Nugget Report, 12/19

Yesterday officially completed one,…..forget it.  I said I’d throw out the calendar.  I can tell things are getting slightly better.  The minute change day to day is barely detectable.  Nevertheless, I feel like I’ve found a couple of nuggets, even though they might really be called nuggettes (uhh, small nuggets).

On Friday I had an appointment with the speech and voice therapist.  Those Phd types love to collect data.  I filled out about 10 pages of questionnaires.  I go through a battery of tests and she tells me my larynx is dry which is why I may sound hoarse even though I’m not hoarse.  I think it’s the damn phlegm.  I can feel it getting in the way.  Anyway, she tells me I’m doing good and we both know that those lovely ulcers on my tongue are really holding me back.  I could be swallowing more but the issue is chewing.

I’ve got to be able to swallow more non-liquid food and she tells me it’s important for me to move into the puree stage.  Some of her suggestions are things like oatmeal, eggs, tuna fish and chicken salad with lots of mayo, and even meatballs with lots of gravy or ketchup.  I’m surprised by all this stuff but then again she’s not a nutritionists.

So that evening I tried some canned tuna.  Normally, I’m not so keen on the canned tuna only because of the entire processing that goes on to get the tuna to the can.  Some cans are not far from eating hotdogs-of-the-sea kind of thing.  The thought of one of the most powerful creatures on earth, and certainly one of the fastest, who literally swims the world traveling thousands of miles in short migratory periods of time, being cut up and stuffed in little cans is not so appetizing.  The tuna is truly a marvelous fish.  Now, as in most flesh consumption, we’ve captured this great creature and penned him and now grow them in farms, cages.  They can’t go anywhere after having almost 3/4 of the earth to roam.  So we slaughter them by the thousands and stuff them in little tiny cans so we can all add mayo and love tuna salad.  I’m not against eating fish at all.  Just that I’d rather eat a piece of fish from a whole piece that is wild caught.

But, in the interest of getting better, bought some canned tuna and added lots of mayo.  I did manage to get about half a can down but the tuna did taste different than I imagined.  I couldn’t stomach, no throat more even though I was still hungry.

Yesterday I had two pieces of corn bread dunked in hot chocolate and it was great.  A dash to the bathroom afterwards for a quick rinse helped, but still.  And, last evening I was very happy to have downed a large Chinese egg drop soup as well as a large hot and sour soup.

This morning I was bound and determined to have pancakes.  Been wanting pancakes for a couple of weeks (for some reason).  We don’t have a griddle so made them in a frying pan.  They weren’t so fluffy (my own ineptness), but I drenched them in maple and agave syrup and got them down.  I was happy.

Enough about my eating habit, but it does have everything to do with getting weight back.  Which,…..I’m glad to say is now 10 pounds off the low.  Now back up to 140.

Even with the nuggettes in hand, still can’t leave home without a homemade mouthwash kit.  I went to Trader Joe’s yesterday morning without the kit and the mucus attacked.  I couldn’t even talk to the cashier my mouth was so full of mucus.  The kit consists of a small bottle of salt water for swishing, spit cup and just in case, some magic mouthwash for the burn.  The mouth is still in a state of constant soreness and the mucus just adds to the challenge of spontaneous conversation.  With the kit, I’m good to go.

The stomach hole is doing well.  So far, no leakage which means that it’s probably healing well enough not to require too much attention except bandage changing.  Weird as it looks like I have two navels about two inches apart, one on top of the other.  And now is probably a good time to stop this blog post as I’m probably sharing more information than any reader might want to know.

embracing weird

We all have a little weird in our lives, once in a while, don’t we? Putting together an overnight bag for the hospital stay lies in that category, as I’m sure it would for most. The weird comes embracing you when reality is close by. And packing a bag for the hospital isn’t exactly one of those overnight stays most of us would relish.

However, after a semi-casual 65 mile bike ride this morning, got to thinking that, as harsh as it may be, I’m lucky to have the availability of rad/chemo. The absence of this treatment at this stage wouldn’t be pretty. So as I’m peddling to meet a friend for my last road-ride of the year, I’m thinking, after passing a mountain of people preparing for the start of the MS ride in Manhattan, that the fact that I’m cold is weird. As I got further away from the crowd, out over the GW bridge and north, my toes got colder and colder. It was only in the low 50’s. Why was that weird? Well, a large portion of riders I passed were in short-sleeve shirts and shorts. I was wearing leg warmers, two pairs of socks (inner socks wool), a short-sleeve shirt, a long-sleeve medium weight wool jersey, and a windbreaker. And I was cold.

How could the 1/2 mountain of people who were wearing significantly less not have been cold? At 25 miles out, after joining up with my friend, I had to stop, take off my socks and hold my toes between both hands for a while. How could I be caressing my toes under two layers of socks when there are scads of other riders out there with much less body coverage? I was thinking ‘this is downright weird.’ Then a little voice whispered to me, “no Freddie, weird is when you get home and must start preparing your little overnight bag.” So my friend bought me some toe warmers (I wouldn’t have blamed him for slotting me in the sissy category) and we were off.

So, is it weird being cold when others are not? Is packing a bag for a hospital stay weird? Maybe. Or maybe not. Weird is only weird when something tends toward the unfamiliar or the unpleasant. When something is enjoyable, exciting or satisfying, it’s not weird.

I was lucky to be out there biking. And I’m lucky to have this opportunity for healing. So when reality encroaches on weird, the challenge is to somehow erase the lines that border weirdness and reality and embrace weird. Embracing weird can magically dissolve it into a harmonious reality. I am so looking forward to packing my little overnight hospital-stay bag.

A separate calendar of to-do’s

I may not have given the bio-energy guy all the credit he deserves (in a prior post). Although credit is truly deserved after input yields positive results.  Nevertheless, the bio guy armed me with good advice, supplements and other assorted drops of stuff.  The first time I saw him, one of the things he did was take blood out of one arm, mix it with a solution called procraina, and injected it back into my navel and my other arm.  He said it was a type of “self-inoculation” for the body to seek out and create defenses.  Anyway, my current regime from him is the following:

For immune system

  • Palo de arco (pau d’arco) 3 capsules @ 3 x’s daily
  • Colostrum, 2 capsules @ 3 x’s daily
  • Selenium (100 mg), 2 @ 3 x’s daily
  • Retiblan (100,000 iu) vit A, 1 @ once daily

For HPV (he gives this to women with cervical cancer)

  • 5 different bottles of drops numbered 1-5.  Started five days ago with bottle no 1 taking 10 drops every 3 hours @ 4 times daily.  Day two = bottle #2, day three bottle #3 and so on.  At day six, today, return to bottle #1 and start the rotation over.  (There is enough for weeks)

For throat

  • Calendula (marigolds) essence – 40 drops @ 4 times daily, gargled and then swallowed
  • Calendula tea – leaves as infusion – several times daily
  • Aloe Vera – balm from the plant – apply to the neck & take 3 teaspoons 3 x’s daily
  • Arcilla – (also recommended from Peru), mix with my own urine (from morning), and apply to outside of neck in the evening.  Also, take (yes swallow) a half of teaspoon 3 x’s per day.

For good measure

  • Ozone oil drops (specially made) – 15 drops every morning and night.

I made the mistake of asking bio guy if, taking all the stuff above, I’d be contradicting the benefits of said stuff by drinking coffee.  Holding my breath for the response,  I auto-cringed hearing the answer.  No coffee.  A major bummer.  Oh well, a chance to dust off the green tea pot.

In addition, he recommended a book and suggested that both my wife (GV) and I read. After immediately purchasing the electronic copy, came home to find out that GV had it and read it two years ago.  Anyway, the author updated a new edition recently – Anti-Cancer, A New Way of Life, by David Servan-Schreiber, MD, Phd.  Written by a doctor who found out, by accidental exam, that he had cancer.  The book is his own story built on extensive research about not only how to greatly improve your odds at combatting cancer, but also lifestyle recommendations for preventing cancer—in ways complimentary to traditional western medicine.  It’s an excellent read and a highly recommended book for anyone.

Odds and end of phase two

It appeared a fortuitous sign, the x-ray/simulation appointment at the hospital today was cancelled due to flooding.  They called in the morning with a delay notice, and then later with the cancel notice.   I’m supposed to just “come in to the scheduled appointment on Monday morning”.  Well that just didn’t compute!  The Monday appointment is to start radiation.  Are we just canceling a step?

So I called the radiation guy and he said that they’d do both steps Monday morning back-to-back.  The step today was to make sure all last minute alignments are in place as a double check.  Not a step I’d like to see missed, so I wanted to double check that they would have time to double check.  Not every day you have the pleasure of being nuked in the neck.  Monday is also the day I’ll receive the first shot of chemo, which means a day and night in the hospital, not to mention getting the PEG tube put in.

While on the phone, I asked the rad guy if there was any chance I could avoid the brachytherapy (he calls it a brachy boost) later on and he says that with the type of cancer I have, they’ve had very good success (+97%) using this localized radiation seed implant.  Not doing so, he says, opens up a little door for problems later on.  It may appear that the cancer is eradicated, but it’s impossible to tell for sure.  There are different types of remission and the bastard cells can come roaring back months or years later.  Better to take the extra step he says.  Also, he can lessen the dial on the radiation for the next 6.5 weeks knowing I’ll be getting the boost later.  So I asked if the lessening of radiation will enable me to avoid the PEG tube, and he says again, not a good idea.  Strike two against trying to avoid multiple holes being opened in frontal section.

Part of my homework was picking up several prescriptions prior to Monday morning, which I did today.  One of the prescriptions – for chemo nausea control was quite costly, over $400 for two days of pills.  I asked the pharmacist why so expensive.  She says because it’s for “chemo.”   Nice cornered market.  So I pleasantly tell the nice pharmacist that I won’t be filling that prescription.  I’ll feel less nauseous not spending the four bills.  Will take my chances.

So looking forward to a nice relaxed weekend, the last weekend, pre radiation.  It’s new toothpaste from here on out.

Odds and end of phase two

It appeared a fortuitous sign, the x-ray/simulation appointment at the hospital today was cancelled due to flooding.  They called in the morning with a delay notice, and then later with the cancel notice.   I’m supposed to just “come in to the scheduled appointment on Monday morning”.  Well that just didn’t compute!  The Monday appointment is to start radiation.  Are we just canceling a step?

So I called the radiation guy and he said that they’d do both steps Monday morning back-to-back.  The step today was to make sure all last minute alignments are in place as a double check.  Not a step I’d like to see missed, so I wanted to double check that they would have time to double check.  Not every day you have the pleasure of being nuked in the neck.  Monday is also the day I’ll receive the first shot of chemo, which means a day and night in the hospital, not to mention getting the PEG tube put in.

While on the phone, I asked the rad guy if there was any chance I could avoid the brachytherapy (he calls it a brachy boost) later on and he says that with the type of cancer I have, they’ve had very good success (+97%) using this localized radiation seed implant.  Not doing so, he says, opens up a little door for problems later on.  It may appear that the cancer is eradicated, but it’s impossible to tell for sure.  There are different types of remission and the bastard cells can come roaring back months or years later.  Better to take the extra step he says.  Also, he can lessen the dial on the radiation for the next 6.5 weeks knowing I’ll be getting the boost later.  So I asked if the lessening of radiation will enable me to avoid the PEG tube, and he says again, not a good idea.  Strike two against trying to avoid multiple holes being opened in frontal section.

Part of my homework was picking up several prescriptions prior to Monday morning, which I did today.  One of the prescriptions – for chemo nausea control was quite costly, over $400 for two days of pills.  I asked the pharmacist why so expensive.  She says because it’s for “chemo.”   Nice cornered market.  So I pleasantly tell the nice pharmacist that I won’t be filling that prescription.  I’ll feel less nauseous not spending the four bills.  Will take my chances.

So looking forward to a nice relaxed weekend, the last weekend, pre radiation.  It’s new toothpaste from here on out.

The bio-energy medicine man

Took the opportunity, while in Colombia for a few days, to visit the bio-energy medicine man.   Actually, he’s a full-on medical doctor, and, his field has expanded to include bio-energy–how energy biologically affects us, and our health.  We are, after all, more energy than not.  Most of us don’t think about what we can’t see.  If we look across a room to the wall on the other side, there may be nothing in between.  Nothing but air, with particles, gases, and more atoms than we could count on a continent of calculators.

Most of us have experienced being in a room and seeing the sunlight shine in at the right angle exposing lots of floating particles.  Intuitively we know those particles are floating when the sun is not highlighting them, but when we don’t see them, we don’t think about them.  Even when we are in places of relative inactivity, there are lots of floating particles, and lots of energy.

Our bodies, even at rest, are anything but inactive.  They continually create mega pathways of energy inside and out which end up affecting everything about us, including how well we function and how well we might not.  Most people can’t see our auras, but there are there.  So the bio-energy guy works with many non-visible aspects that affect us, including what we eat, how we think, sound vibration, and lots more.  Without getting too deep, he helps his patients in ways that western medicine does not, but being a medical doctor, he does this in a complimentary and natural way.

Basically, he sees the fact that I’m feeling better as a very positive sign that my body has already begun to fight back the tumor.  My throat hadn’t been sore for at least one week, and my breathing at 90% of max heart rate had become easier than a month prior.  (For the last month I’ve been taking the natural supplements he had been recommending).  He therefore strongly recommends that I delay radiation and chemo for a couple of weeks, maybe a month.  His logic is that if I feel better during this time, it must be my body battling back.  If so, there is a slight chance to avoid the harshness of rad/chemo.

There is nothing more I want to believe and I give it some serious thought.  But interestingly enough, when I return to my apartment, the back of my tongue feels like its being slowly pressed with pliers.  And during the next day, it starts feeling tighter.  It’s like my tongue is saying “no, don’t you dare delay the rad/chemo dude.”

But there is no denying that my ability to chew and swallow has improved.  So I wait until I get back to New York on Wednesday, attend a couple of meetings and notice that it doesn’t bother me to talk as it had two weeks ago, and I put a call into the radiation guy.  By the time his nurse gets back to me (1/2 day later), the back of the tongue starts to bother me again.  I mention delaying, and she says not a good idea, and I agree.  Tomorrow’s a go for the rad simulation and Monday I start getting nuked and chemoed.  The only thing I do say is that, if possible, I’d very much like to avoid the Brachytherapy down the line.  Only time, and possibly my behavior, will tell.

range of choices

In certain parts of the world, when something mysterious or sinister happens to our organism, there is no choice.  The only option is doing nothing.  But those of us who are fortunate enough, can obviously make decisions to do something.  Depending on where we are in the world, that process may take on decidedly different tracks.  Most of us in the U.S. take the conventional track.  We call it western medicine.  The alternative we may call eastern, holistic, homeopathic, or alternative.

My brother recently sent me a couple of links to radical fasting therapies as an alternative cure to cancer.  Discovered in Europe, fasting on water or certain raw juices, for extended periods, will starve the proteins on which cancer cells survive.  Literally being starved to death within the body, the tumor, or cancer cells, will shrink, die, and be eliminated.  Supposedly this has been proven in over tens of thousands of cases.

Eastern approaches include, but are not limited to; acupuncture, foot reflexology, magnetic therapy, root and herbal cures, etc.  The attractiveness of these more holistic approaches (including fasting therapy) is that they are more natural, less invasive, and less harsh.

Our conventional (predominately western) approach is a tad more drastic. If we find an abnormality, we cut it out. If that would get messy, then we replace that part.  Or we may go the nuclear radiation route, anything in the way gets blasted.

Whichever approach, there are advocates who will readily stand by their methods.  In a way, I’m fortunate that I live in New York City and have the availability of state-of-the-art western facilities and top notch health care professionals.  At the same time, I’m fortunate that my wife is connected to various masters in the alternative world.  A broad view never hurt anyone.

Evaluating multiple approaches doesn’t mean that they can be mixed and matched.  One of the questions asked in radiology was whether I am taking vitamins or herbal supplements.  Going into radiation they say, is better done without any supplemental antioxidants, and without prescribed herbal supplements — they might lessen radiation’s effectiveness.

Being in the track-deciding mode depends, perhaps in part, on how early the cancer is detected.  It’s hard to argue against the value of regular check-ups and preventative maintenance.  In the case of M. Douglas, and myself, misdiagnosis played a part in not catching the disease at a more opportune stage.  Cure time now is more precious.  There may be a formula out there in the ether waiting to be scribed to paper.  Something like: degree of choice range is proportional to stage of malignancy divided by square root of growth rate, over factor of affected body part, times coefficient of overall physical condition.

Back to the range.  Prior to the biopsy, I was evaluated by a master foot reflexologist, a nun who looks and acts like Mother Theresa. She told me flat out that I don’t have cancer and that I definitely should not get a biopsy nor should I seek radiation or chemo treatment.  She said I had a foreign body on the base of my tongue which caused an infection and could be worked out with reflexology. She was serious and insistent about her evaluation.

That same week, I saw a couple of experts in Chinese medicine, magnetism, herbal, acupuncture, body/face reading. They told me I could think my way out of the throat problem. I was, perhaps, keeping something inside, bottled up, that created the throat tumor.  If I un-bottle myself, I’d be attacking the cause.  A different expert reflexologists told me (that same week) that I should get a biopsy and, that if I had daily foot reflexology it would compliment the radiation/chemo treatment.

And, as mentioned in an earlier post, the two bio-energy doctors both recommended the biopsy, and both had different potions (concoctions of herbs & vitamins), that I should take 3/4 times per day for the next several months to bring the balance of the immune system into alignment.  Since I traveled to Colombia yesterday for a quick 4-day business trip, I’m taking the opportunity to see one of the bio-energy Drs. while I’m here for his opinion (again) on complimentary supplements.

I’m sure I’m missing various other approaches one could take to cure a throat cancer tumors and other cancers.  Even within the our conventional western world there are different approaches.  At this stage, as much as a holistic approach sounds attractive, time is not a luxury.  But, picking out certain parallel (holistic) therapies that would compliment the radiation/chemo might be a logical approach.  So logical in fact, that the range is being quickly narrowed.

Winning, conquering, beating, curing, healing,…

Which is it?  All, and more.  Googled “throat cancer” the other day and a few lines down was a picture of M. Douglas with a quote “I’ll beat this.”  And, we all hope he does and he will.  That’s confidence.  Innate confidence of self-survival is critical.

It does seem strange though, that we can define beating a sickness, or a disease, like we would beat a team in a playoff, or a political opponent.  So many times we see the bravado confidence of both sides in a contest declaring themselves the victor, or beating the other, and we know one will loose.

In the case of malignant cells, they’ve simply declared existence.  And their mere existence signifies a battle.  A contest.  But this competitor, or rather enemy, like many other types that invade or are born in our organisms, do so in a stealthy, silent way.  They don’t play or fight fairly.  They can exist for an unknown period of time, raging damage before we know there is a battle that needs to be fought.

Therefore when we get the message that we need to go to war, many of us hire a team of experts, knowledgeable in certain forms of battle strategy, and set up and employ a tactical plan, complete with a declaration of confidence at being victorious.  And why not.  Our cells listen (most of the time).  They are obedient soldiers ready to carry out clear instructions from central command.

The trick is knowing how to clearly communicate those instructions.  Because this opponent doesn’t just need to be beaten, but annihilated.   This opponent can’t just be beaten into loosing, or into submission.  We need to (be able to) wage a kind of cellular genocide.  These cancer cells need to be exterminated.

During this phase two, the mission is organizing central command and readying my own killer cells for deployment.  And getting advice from other top commanders, those with intelligent and practical experience in focused annihilation of stealthy virus cells.  The process has me humbled, yet determined to be cured and healed (internally), even if the external declaration is framed in the context of a contest.

medical insurance

My sister asked me last week if I had health insurance.  Yes, I say with some relief.  I’m fairly certain that I’m covered for a portion of something.  If I were astute (about this), I’d have researched the coverage documents to know exactly what that portion is.  Kind of like not opening a deflated 401k statement, I’ve not opened the medical coverage documents yet.  It is what it is.  I’ll deal with the out-of-pocket when I’m out of therapy.

A few years ago, because I’ve been buying health insurance on the market, as any good shopper, I looked around for best value.  When the payments are high and usage is rare, it’s an incentive to drive down the monthly nut of any bill.  Hence, I changed my medical plan a few years ago to a somewhat high deductible.  Still, aside from home rent (mortgage), health insurance has been and is the single largest monthly liability.  I suppose though that if I had a car in New York City, the expenses related to the car, insurance, parking, upkeep, might win the number two spot.  But for now, health insurance has that honor.

But insurance is one of the monthly bills you’ve got to ‘not mind’ paying.  Whether it is a vehicle, homeowners/renters, or health, insurance is better purchased than using.  Not sure about life (ins).  During the years working for a large company, my health insurance was a split pay.  It wasn’t much of a decision.  Either take the employer’s choice, or get your own.  No decision required because a company can buy group policies more economical than individuals.

For some reason, many in America want the gov to control and administer health insurance.  Does it make sense to layer the cost of administration by the State on top of the already high cost of health care?  After all, the gov, when administrating anything, is highly efficient and cost effective.  Or is the opposite true.  My wife’s French friends like the fact that they receive health care when they need it without paying (free, they say).  Then they fit and complain about forking over more than 50% of their salary to the state.  Pay the state (middleman), receive service from a third party, and the service magically becomes free.  Or it feels somewhat like a benefit.

It’s easier when the direct costs don’t come direct out of pocket, but rather indirect.  The freakanomics can be saved for another (unassociated) blog.  Whether the state pays, employer pays, or we pay direct, we will always pay.  It’s only a matter of how and how much.

mouthpiece(s)

Went back to the dentist today (oncology) to collect my mouthpiece(s).  He was slightly more cheerful this time.   The receptionist recognized me right away.  Said she never lost anyone’s health card before, and no, in one week, she hasn’t managed to find mine.

Arrived early hoping to get out early (because I was in the process of dragging large hockey bags (of bags) to a new office space uptown).  Success.  And, as a bonus, in the comfort of the reclined dental chair, unwittingly snagged a 15 minute deep snooze mid-afternoon.

I’m only in the chair to try on the upper and lower mouthpieces.  Teeth guards, not  much different from those used by participants playing impact sports.  I’m required to wear them during radiation.  Don’t know exactly why they are required unless radiation ends up similar to an impact sport.  He tells me they are just protocol.  He also reminds me not to forget the prescription toothpaste.

Looks like I’m free until the 1st of October.  Strangely, the throat is much less sore.  But, talking is more of a chore.  Perhaps the tumor moved down a bit.  I’m sure they’ll find the exact spot prior to zap time.