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