Onco-lology

It’s not that uncommon for us to be asked, “how is Maya”. And the concern for our child from all around us, has been nothing less than overwhelming. We are grateful.  My response in general has been an optimistic one. It is with hope that we proceed.  But it hasn’t escaped me that my responses have become temporal.  “Maya is doing very well…. right now”

We’re coming up on 2 years of living with cancer. I wanted to write down what it has been like and how I feel about Cancer treatment.  Although I want to be as object as possible, I admit that I will likely fail at this.

There are many dimension to this… which I call onco-lo logy, a look at oncology really; personal, social, communal, clinical, academic, beauracratic, the list goes on. So I am going to post some of my thoughts and opinion here. If you want a preview, I can summarize by saying Pray that you don’t get cancer.

Cancer is the boogieman that we tell our children, that “they do not exist“.  But it does.  It takes young and old alike.  And most don’t come back.  And these so called heroes who make it, don’t really… Not really.  They are cut, bled, beaten down and as a whole carry the scars, both mental and physical for the rest of their lives. So do we, the family. And there is no cure for cancer!  No.  Those who make it, make it because for the most part, they are lucky. Lucky because they somehow have the right constitution to slip by both the cancer as well as the brutal therapy.  And of course, lucky also means lucky … now. And how often have I heard from those “I wouldn’t wish chemo upon my worst enemy”…

You might say that well,  a lot of advances have been made in Cancer therapy and things are looking better.  And you might say that it’s never been more promising.  And it’s hard to argue that.  But, to me, these statements are non substantial statements. In order to see how well we’re doing, we need to put things in some context. So, here are some thoughts:

State of Affair.

In a word, it’s dismal.  I am not talking about some 3rd world country where there is no treatment options.  I am talking about the therapy that is likely available for you and I, and of course Maya.  The fundamental problems lies with the fact that Cancer is not understood.  The difficulty in understanding cancer, from the layman’s perspective (mine) can be summarized as thus:

  • Don’t know how the mutation comes about.  We know that certain compounds cause cancer. But, how does mutation come about?
  • Once there is a mutation, there will be more more mutations.  Even if you have a reasonably homogeneous type of cancer, it can mutate. Most likely there will be mutations, as soon as you put stress on the system, such as chemotherapy.  Once the mutations take place, the original therapeudic mode no longer works.
  • Complexity.  We as a kind are just begining to see into genetics, let alone trying to figure out how things work at a microscopic level.  Yes, people are looking at persolized medicine or looking at mutations, P53, NMYC, etc, but it’s really really complex.

Let me try to put it in context. Do we have a cure for common cold? After all, it’s just a virus; protein molecules with some “goodness” in the middle. Well, cancer is more than a handful of protein molecules.  They interact.  So, trying to figure out the interaction is in itself might be an intractable problem.

Why is curing a common cold so hard?  It’s because they mutate.  Every year, there are some mutation which the body has not seen before. And since the body has never seen it before, it takes time to learn the virus before it can fight back. Virus is a simple thing and we don’t know how to protect ourselves against it.  Cancer is orders or magnitude more difficult a problem to tackle.

And nature taunts us, especially for those of us who deal in neuroblastoma.  Nature taunts us through spontaneous remission of neuroblastoma in certain children. They simply disappear.  So, there is a “happy” pathway, which does not involve damaging the children. But finding that pathway is hard.  I am not even sure if anyone is looking at this phenomenon.

Do I think there is a cure for cancer?  Yes I think so. However, I strongly doubt that the cure will come from looking at the problem at the molecular level.  It’s just too hard. IMO, the cure will be presented from outside oncology by someone else, may be even from someone outside medicine all together. (If there is some inkling of agreeing with me here, you should really think about what that means)

We will not have cure for cancer until we have a cure for the common cold.  And even then, it will be well after we have the cure for common cold, will we ever see anything close to a cure for cancer.

So yes, things are better than ever before.

By the way, we have another virus that’s been devastating peoples lives. It’s called HIV.  It’s been 30 years since the outbreak. It has taken 30 years to get a handle on this disease.  Presently, there isn’t a vaccine or a cure. However, the therapy is thought to be … acceptable, as HIV patients in the first world don’t die as 10 years ago.

Current therapy

When we talk about cancer therapy, I think that almost unanimously three modes are sited:

  • Chemotherapy
  • Radiation therapy
  • Resection.  (IE, surgery)

That’s it.  All of these modes of therapy have their place and uses, although I hesitate to say that they are useful. In neuroblastoma for example, where the survival rate across 5 years is approximately 40%, can one say that these therapies are useful?  Moreover, the damage that’s caused, especially by chemotherapy, is hard to accept.  For example, there are chemo agents doxirubicine that are known to cause leukemia on prolonged use. It’s hard to know how much damage we’ve incurred in Maya.  Signficant hearing loss and infertility and neuropathy are but the most immediate side effects which we deal with.

So then, what are the alternatives?  Yes indeed…. what are the alternatives?

Well, there aren’t any!  Yes, there are a bunch of “alternative therapies”.  But saying that these alternative approaches work, is being overly simplistic. Common questions are:

  • How can anyone say so without data?
  • How does the alternative work?  Based on one or two people?  Adults?  Children? etc…
  • Remember, cancer is typically heterogenous.  That means, there are multiple mutations.  So, do the alternative work against all mutations?
  • I can yield to the idea that some therapy may work on some small number of persons, because they have the “right constitution” (or pathways).  But as a general therapy?  Sorry…. No such thing.

To use an example, do you really think that Steve Jobs didn’t get the absolutely best treatment possible?  Would he not had the resources at his disposal to find and/or try any therapy that showed some promise?

To me, the lack of a cure / solution just means we have to find something that may work; that aligns with Maya’s constitution.  At this point, the only alternative therapy that I think may help, is diet.

But for sure, the existing therapy comes woefully short of the need.

progress in Medicine

When I look at the progress made in medicine, in oncology, I often shake my head.  When will we ever get to the point where the “tricoder” will fix all our ailments? When I see how far we are from curing the common cold, and understanding to some degree, how much more a complex problem cancer is, I don’t know if we’ll ever get the curing cancer. And we so blindly throw money at the cancer problem.

Is there a solution to Cancer?  I think so.  I think that because body does something to fix itself. Certainly in neuroblastoma, there is a pathway where the child spontaneously goes into remission.  I doubt though, we’ll figure out the answer by our current methodology.  That is, trying to understand cancer at the molecular level.  It’s just too hard a problem.

In computing science, there is a class of problem called NP complete (NP-C).  Simply put, NP-C problems are really hard problems to solve.  For example, “Travelling Salesman” is an iconic NP-C problem.  The questions is, what is the optimal route for the salesman to travel N cities?  It’s an exponential algorithm problem.  (IE, If solving the problem for 100 cities takes 1 day, solving the problem for 101 cities may take 100 years.  This is not exact, but it gets the idea across.  BTW, DNA sequencing is a subset problem of TSP)

So, one trick we use in computing science is, solving a similar problem which is not NP-C. Most times, similar or simpler problem is “good enough”.  We’d say, well the salesman does not have to visit Canada in the winter time, because no one buys boats in winter, in Canada.

I wonder if an analogue of some kind could apply in oncology.  For example, if curing cancer is exceedingly difficult, why could we not just live with it?  Cancer kills because it metastizes.  So, if we have a localized tumor that does not spread, could we not call that pseudo-benign?  It is thought that we all have little micro-pockets of cancer in our body.  The main difference is, these micro tumors do not metastasize, and they do not grow. They do not grow because the body does not allow angiogenesis to take place (formation of blood vessels) to feed the tumor. I for one would be happy to live with a tumor that just… does nothing.  There is no need to try to obliterate it and  cause significant damage to me in the process.

Ultimately I wonder if we have a convergence point?  In other words, how long before we can solve the cancer problem?  Is it 10 years?  20 years?  50 years?  100 years?  Can  anyone say?  Or are we all sort of runing around blindly and hoping that someone will run into some key pieces of information?

And what about the availability of information?  Shouldn’t we have a global open source cancer database? Hmmm…  money is just too good in cancer to find a cure… yet, I think.

So then what?

Now that I’ve painted somewhat a grim picture, what should we do?  Well, dont’ get cancer… But we are not there are we? Take a shrewed position. Don’t give away anthing.

  • diet, exercise, and cultivate a good mental state.  All of these components will be required.
  • Vegan diet in my opinion is a must.
  • Be as knowledgeable as possible.
  • Try everything. But do it in such a way that it compliments life. Non toxic, first!

Oh BTW, I’m sure some of you have seen the following video.  There’s been many annectdotal suggestions that seem to indicate that diet plays a major role in our health.  What’s really neat about this video is the comparison of the woman and her husband across the time.  Also, a vegan diet is now commonly accepted as being the only “therapy” that reverses the damages in the blood vessels in the heart attack victoms.  I also would recommend “forks and knives” to everyone.

As a society,

  • Age of paternalism is over.  In cancer, Doctors don’t know.  So, paternalism can hardly apply here.
  • Accountability is necessary.  What questions can we ask of the medical community?
  • Open data.  We need to make data publically available.  Some pharma’s are doing it already, but that’s more an exception.

Take a look at the nytimes article I found.

Final word:

  • Pray that you never get cancer.
  • If you do get sick, find a good hospital.  However, find even a better doctor. Someone who cares.
  • Don’t forget that regardless of what your doctor says, keep in mind, they don’t know either… and that with cancer, it’s all up to you.

Warrenty Void

A good friend of mine who is also a biker, and I often look at bikes on the street together.  No surprise there.  When we do, we don’t marvel at the brand new bikes.  We drool over the ones that are dirty, often with duct-tape, most certainly with decals from all over, and looks like crap. The reason is simple.  That bike has been ridden! It means that the bike holds within it stories worth hearing.  It may have on it still in some small crevices, the salt from the pacific ocean, dirt from the arizona desert, mold spores from the everglades, or even grass bits from the plains of North Dakota. Inevitably, there will be a jacket or two that is in similar or worse shape.  Hopefully, there is also a person with a twinkle in their eyes.

This dirty and tired looking thing is also imbued with a healthy dose of exhilaration, inspiration, gratitude for life,  as well as discomfort and sometimes even terror. In other words, it is infused with a particular flavor of life; life lived closer to the “bones”.  And when we see a brand new bike, with brand new gears shining under the spring sun, we pass by with a bit of disdain.  That is not the way that bike should be! If we harbor good will that day, we may even wish for it to become dirty soon.

It’s not the shiny new bikes that makes us look.  Quite the contrary, it’s the griminess and the scars that we look for.  Unsightly spot weld points are my favorite.  The spot weld says that it was bad, and god knows how that came about, but with a bit of care and tenderness, the bike made it. It may not be as strong as before, it may not handle just right, but these are things that give the bike character and these are the things that makes us fall in love with the bike.  They are the instruments of adventure for me and my friend that takes us to unknown territories.

It seems to me, people are similar in many ways. We get dirty.  Life knocks us about.  And as time passes, we become tired. But I would rather get dirty, get knocked around and become tired than, preserved. Preservation does not save us from fading. While preservation may save us from the potential fatal crash, it also stops us from experiencing the things which we must; our very own life.

I don’t want warrentees in life. There are no warrentees in life.  And if there were warentees, I do not wish to live a life where it is restricted by warrentees. (Where did I hear that… corny) But isn’t that what we all do?  The job, the security, the retirement plan…  We go to school, we get a degree (or not), we rush to work day in and day out.  Why do we do it? For security, for the future…  We work so hard for this warrentee. That’s what good citizens do.  And when the financial melt down wipes away 40 – 50% of your security, you can only complain to your local MP about how the system has screwed the seniors, who had something.

Is this any different from a biker who’s always cleaning and tinckering with his bike, but never riding it for the fear of getting it dirty or damaging it?  I think so. I wish to be dirty, tattered and tired right to the core by the time I am done with my life. I wish to be a cantankerous old man who is happy to bitch about nothing, but be fully deserving of the aches and pains that I may have by then.  And yes, right now, it’s uncomfortable with dash of terror sprinkled about.   And because things are uncomfortable, things are also happening. Who knows where things will be like in 5 years?  I don’t know.

But just as I don’t know how things will work out in 5 years time, I wish for it to be gritty with life. Cleanliness and sparkles are to be avoided… at all cost. Under what sparkly things shall I hide?  The job? a new car? Breakages do not matter. If it breaks, fix it and move on.   Discomforts do not matter.  Matter of fact, certain amount of discomfort should be welcomed, although it is hard to be grateful for it. But it does motivate us.

What matters, is that I get to live in ways that are meaningful to me. If the warrentee can apply great.  If not, void the damn thing and for the first time in my life, I am happy to “let it ride”.

Meaningful right now means providing my kids and myself with some breathing space and show my kids the wonders of this life.

And soon, there will be a dust particle from Alaska, the smell of sulfur from Yellow Stone, sand from many beaches of the west coast that will be permanently etched in my mind along with Maya’s glee, and twinkle in Taylor’s eyes.

That will mark something worthwhile for me, adding  few more mileage on my body and soul, pushing me towards, and just a bit closer to the cantankerous old man.

 

And that will be good!

The Plan

Well…. the plan is coming along nicely.   I must say, I’ve been looking at RV’s for good little while.  It wouldn’t be a stretch to say that it’s a good five months or so.  When time permits, I’ve been on Ebay looking.

I must have skinned this cat a dozen ways or more, trying to figure out how to do this.  For the record, here are some things I’ve been considering, roughly in the chronological order:

RV

What size? Should be big enough for us to travel with some semblance of comfort.  After all, we’ll be living in it for a couple of months. That then brings up the mileage issue.  Dragging along your home around isn’t too smart an idea is it?  Gas mileage is an important one, if you are thinking about distance.  We’re talking 35K – 50K KM during the summer months.

What about the fuel type? Diesel or Gas? I prefer diesel, but that increases the price of the RV by 4 – 5 K dollars. So no difference over all.  What money I would have saved in gas, I would have to pour into the price of the RV. Diesel is nice because it has roughly 30% more energy than gas.  Because of the way the engine is built, the diesel engines are a lot tougher. So good for our purpose.

Unfortunately in the states, diesel is roughly 30% more expensive.  So, the gain in the price would offset any advantage I would have had over the additional mileage.  In Canada, the price of gas and diesel are about the same.  The problem then is that Gas price is again about 30% more than you get in the States!  No win.

Bus

Buses are great, especially the interstate types like a greyhound.  You can find one that’s been converted into an RV and I really like the idea of it. These things are built to go the distance.  Two issues are:

  • The buses are built for distance, but if you somehow end up with a lemon, the cost of maintenance can kill you.  An engine over haul will run you around 10K on the cheap side. I am not that mechanically saavy.
  • Most of the converted buses are “retro”.
  • Again, gas mileage is something to worry about.
  • Oh… you need air brake license.  No biggy, but still…
  • One of these days, yes, I would like to own a bus.

Commercial Truck

Again, there are conversion jobs out there, that’s been converted as an RV.  Really the same issues with the bus.  It can also mean that you might have to do some handy work to get it livable.  For example, one might need to put in a water system. Um… no, I am not that guy!

Toy Haulers

This is my first choice.  Toy haulers are RV’s (or trailers) that have  a garage built in them. They’d be great, but the issue is, the garage takes up space. So, a third of the space becomes a garage.  The biggest issue is that Toy haulers are rare to find and subsequently they are pricey.  Most of what little you do find are fugly as well.

I even thought about buying a big truck, converting it and adding a garage. Well… I guess I am old enough to realize that taking on that type of a project is a wishful thinking. Something to be said about blind enthusiam.

So the decision was to buy an RV, which represents the least amount of work really and also buy a trailer for the motorcycles. Can’t say I am crazy about pulling a trailer, but under the circumstances, it’s the most practical thing to do.

 

The Beast

After all the ups and downs of looking, getting excited, being bummed out, I found a nice RV just outside Toronto.  The gentleman who sold me the RV, Thomas, has been very kind and went out of his way to take care of some of the administrivia.  Thank you very much Thomas.  I hope you will keep tabs on us and our trip. We will be posting lots of photos on our trip.

The RV is a 30 foot Georgie Boy, Maverick. I don’t have any pics yet, but take a look at this. It looks exactly the same.

We’re going to take it out for a spin over the upcoming long weekend, and likely to take it out during the spring break to Orlando and back as well.  These couple of trips will provide us with an opportunity to take in what the RV lifestyle will be like.  As Thomas said, it’s big, but it’s small.  That is, it’s a big truck to drive around, but in terms of living space, even 30′ isn’t a lot. Well…. what we give up in terms of creature comforts will easily be made up over the views we intend on getting.

I have a lot of positive feeling about this RV. It is a tool that will allow us to implement a plan that will have a significant impact and meaning in our lives.  It represents adventure in our near future.

 

Big Items Left to do

Well, not so big.

I need to have the sidecar mounted on the bike.  That will happen over the next three months or so. Still lots of time to get it done.

Secondly, I need to buy a trailer to haul the bikes around. The plan is coming together… I hope you are as excited as we are with this upcoming trip.

Oh BTW, finding parking is a challenge isn’t it, if you live in the city…. So, we’ve found a RV parking lot where we can keep the RV outside the city.  Geeze louis!