Diagnosed with cancer?

The following is recycled from an email I sent to a good friend of mine.  Its talking about possible suggestions of what to do if you or someone you love gets diagnosed with cancer. This by no means should be considered authoritative advise (if you need a refresher on my level of authority please visit the 98braintumor’s Disclaimer).

“At the end of the day” I believe each person should consult their doctors, medical professionals, friends and family and ultimately their own conscience, reason, faith and intuition.  Here are some ideas based on my experience with doing something like that and I hope it might be of use to you.

Take responsibility for your own health, even to the point of being a jerk 0-;. I found that there are doctors with big brains but little emotional intelligence.   A pet peeve is when they are afraid to admit they don’t have the answers, are completely obtuse about the emotional weight of information they are providing, or lack any real troubleshooting ability.  I’ve said to doctors before, “I’m okay with you taking a guess on what we should do.  Even a best guess would be okay.”  This speaks to my own experience in software engineering where there have been a few times, in dealing with a complex problem, someone had a hunch, couldn’t necessarily explain it all, but we arrived at a solution nevertheless by “stepping off the ledge” and just trying something on faith.  It was only after the fact that we understood the entire problem and solution space.

Its true as well, and perhaps a cliche, medical schools don’t appear to teach or have time for people skills. This is aggravated by a system which encourages a kind of fast food (Order Up!) mentality in which each patient must only get the allotted 5 min/32 sec/99 ms per visit in order for the doctor to pay his or her mortgage, staff and medical insurance.  Also, if you don’t like a doctor then find another one.  If you only get 5 minutes it might as well be a good 5. They are not gods, not even lesser ones even if their suits are hand tailored on Savile Row.  Second and even third opinions are good too.

I found a few studies on ncbi.com that talk about how survival rates were better for cancer patients who had bad relationships with their doctors.  From my experience this is because they don’t roll over and trust everything that their doctors say; they take initiative, ask the tough questions, don’t take “no” for an answer in some cases, and are in some ways are “a pain in the arse.”  Maybe even demanding of 6 min/44 sec/57 ms or something crazy and outlandish like that.  If you are not feeling well enough to be a thorn, or if that is not as Austin Power’s would say “your bag man,” get that friend or family member with a bull dog mentality to go with you.  Have them take notes too.

BTW ncbi is a good reference for published medical journals on different substances and their efficacy against cancers (both specific and non-specific). http://www.ncbi.nlm.nih.gov.  I’ve used it several times as a reference as well as to remind myself why I wasn’t a huge fan of Latin in high school.  You can also look at potential clinical trials and discuss these with the doctors.  Find trials at https://clinicaltrials.gov/

In general, stick with the big cities and big institutions if you have a life threatening condition.  Also try to find the specialists for a given illness.  There are many different types of cancer and, within each type, lots of variation.  The errant cells that constitute my particular version of melanoma, for instance, are not the same as Susan, Jeff’s, or anyone else.  The big cities and institutions (again I’m generalizing) attract the best doctors.  As a rule you will get the best care in these locations and, as indicated, when you seek out the ones focused solely on your disease.

Omid Hamid at The Angeles Clinic, my favorite all time doctor (no offense to anyone else, many of you have been da bomb), probably sees a couple hundred patients with melanoma per year.  A local, less specialized oncologist, might only see 1 or 2 people diagnosed with melanoma in an entire year.  So, think about it, would you rather have the guy who specializes in Ferrari’s at the Ferrari dealer fix your red F12berlinetta or would Earl at Roadkill’s Body Shop and Repair be better?  You may have to work for these relationships if you do not live by the big cities or if the expertise is in a different state or even country, but its worth it.  Finding the best can have dramatic differences in overall outcomes.

In that sense, I think about doctors the same way I think about software engineers (or any engineers).  Not all are created equal. I know this “anecdotally” (yeah that just happened I made up another word) from experience in industry.     The good SWEs can accomplish 5 or 10x more in 8 hours than the not-so-good-ones in 40 + Mountain Dew + doughnuts + overtime. There are lots of published statistics describing this condition as well.  IMO it’s the same with doctors.  You want the knowledgeable and learned, the trouble shooters and communicators with helpful attitudes and a passion for what they do.  Nerds rule by the way.

This includes investigating and seeking out alternative forms of medicine.  Controversial at best and again in the category of my own opinion, but I believe that there is more than one path towards healing and finding answers. I believe this not just because I’m like into groovy and spiritual stuff and like because I have spent thousands of hours simultaneously rotting and expanding my brain listening to the Grateful Dead. A trip around the internet suggests that there are lots of people out there offering different viewpoints and experiences.  Undoubtedly there are snake oil salesmen out there, pseudo science, crackpots etc.  But, there is also a whole world of people sharing their personal experiences. I think its equally “bad science” to summarily decide that all of it is no good because it doesn’t have a clinical trial and million dollar research grant associated with it. I think the scientific method and FDA are there for a reason and have brought tremendous good to the world.  But it isn’t everything IMO.  Nor is necessarily running off to central america to have your blood drained while hanging upside by your toenails, drinking a vegetable smoothie and listening to Bob Marley the Alpha and Omega either.  Again, controversy abides.  Thank God we are entitled to own opinions, for now.

Find the knowledgeable care-givers and/or patients that are running advocacy programs. Find out if there are online support groups or organizations interested in your specific cancer and ask them the questions…”is this treatment effective” or “is this doctor good?” “how do I deal with this side effect?” etc. I believe finding someone like this for me, in the case of melanoma, was one of the key factors that kept me alive in the beginning. I was able to make a much more informed decision when armed with the right information from someone who had been fighting the battle longer than me.  The real rub with all that though was that she was introduced to me by my Mom; thus proving Mom’s are always right. Dangit!

Don’t underestimate the power of nutrition and the role of the immune system in fighting cancer.  This is another controversial topic with the power to exercise my inbox.  Especially for lots of med professionals who think it’s a bunch of mumbo jumbo.  But if you step back and think about sayings like “garbage in garbage out” or just simply apply common sense, then the answers get clearer (for me anyways).  At the end of the day I turned to better nutrition because I was desperate and had nothing else to lose so perhaps its not really fair for me to offer my opinion on this subject.  Either way, it is a personal choice.  I decided that I might as well go out, if I was going to go, swinging as hard as I could for left field, turning over every rock and trying anything I could in the process.  There is lots of evidence that diet plays a role in cancer.  Three of the places in the world where cancer rates are as low as 1/3 the rate of US (Greece, Japan, and a community in California (I’m thinking Mormons)) have demonstrable high vegetable/low protein diets.

I am going on 5 years without any processed sugars or meat.  I did this after research that suggested sugar is one of cancer’s favorite meals because of its high metabolic rate as well as twisted processes.  I decided I was not going to give it an easy meal, ever.  I forego meat/sugar as part of the budwig diet (can also google).  Another controversial subject and not that easy to implement.  But, I was very encouraged by the hundreds of online testimonials that I read of people who did it and got well.

In my own experience I also saw dramatic results using this while doing immunotherapy (new kind of chemo with different emphasis than traditional therapies)…was doing blood work every week as part of clinical trial.  Within 1 week of starting the budwig diet my dangerous liver and kidney counts all returned to normal.  It was dramatic enough that the doctor asked me if I had still been doing treatment.

There are natural supplements that have been shown to fight cancer.  Some have even gone head to head with chemo therapies.  One that I use every day is turmeric with black pepper (I have @ 2 tablespoons a day with a touch of black pepper which helps increase its effects, prepared as a tea).  Turmeric contains curcumin which is the substance in curry, used heavily in Indian food (another place in world with low rates of cancer).

Confront the possibility of dying and deal with whatever needs dealing with now.  This was and is one of the hardest things for me to have to face.  But the link between emotions/well being and the immune system is also documented.  Connect with church and mental health professionals to work through any issues or problems.  As somebody said once “there are no real atheists in fox holes.”  Either way, I have found great comfort in exploring the subject of death and afterlife.  It’s amazing, when it happens, to realize how short life can really be and to stare down death.  Drove me whacky for awhile.  Again church helped.  The fellowship I attend helped.

Praying, reading and examining the subject of death helped as well.  I got a lot out of sites like IANDS site on near death experiences (read every single one as part of morning reading) as well as books like Eben Alexander’s Proof of Heaven.  Elizabeth Kubler Ross who wrote “On Death and Dying” also wrote On Life After Death, having researched something like 20k different near death experiences.  For me, just as with reading about people’s personal experiences with alternative medicine, these kinds of life experiences, where people are sharing their own thoughts and perceptions, were extremely helpful.  It wraps some skin around the theory and/or faith and belief.

Remember that statistics are not everything.  They can be a strong marker or indicator for various diagnosis, treatments etc but are not the end all be all.  There are so many complex factors that come into the treatment of a human condition (person’s age, relative health, diet, mental attitude etc).   So if you hear some dismal stats just remember that one size does not fit all.  In turn, you have to be careful what you choose to focus on.  Studies have also shown that the stats can be self-fulfilling prophecy…eg tell someone that they are going to live a month and they might just oblige and die exactly 30 days from now.  This underscores the need for mental toughness as well as support systems.  People that talk about their health with others formally or informally are also statistically shown to have a higher survival rate.

Don’t give up no matter what.  Another cliché but absolutely true.  I’ve had 98 brain tumors and am still alive three years later, after one grim diagnoses after another.  I’m not bragging (I hope) but have had cancer in brain, stomach, lungs, liver skin.  I’m still here though maybe not “all there.” I can’t blame cancer for that “not all there part”…goes in the category of pre-existing conditions.

Again, all of the above is based on my opinions and perceptions of what worked and didn’t work.  Its not comprehensive.  I forgot, for instance, to talk about how I like to smother myself in organic garlic butter and slither up trees in the backyard to watch the sunrise each morning while chanting the chandi path durge and whipping myself with a cat of nine tails (do I have to say ‘kidding’ here or did you think for a second that was true?).

Regardless I could be wrong about some things and I could be right others.  If you have cancer and are struggling, believe me I know, that’s maddening to hear.  We desperately want to know and have the answers, the timelines, and the proven results.  Are they there to be found?  Sometimes yes, sometime no.  I believe I’ve found a few ideas that work for me.  Don’t know if they are going to last another year or another ten years or more.  I’m certainly hoping and praying for the latter.

What I do know today, to my very core, is that these three are worth the price of exploration.

derek S&C S&D

Con and Der

 

 

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5 Thoughts on “Diagnosed with cancer?

  1. nicole on October 17, 2015 at 5:48 pm said:

    hi leland my name is nicole and i too have stage 4 noma. feels like a support group. anyway, my friend rendy in chicago pointed me towards your blog. and your latest post resonated with me and i wanted to share with you a book that was death changing for me, it is called “Die Wise- A manifesto for Sanity and Soul” by stephen jenkinson. you can find it at http://www.orphanwisdom.com. it is dense and feels like he is writing in circles, but when he gets to it, it was worth it. he spent 30 years consulting dying folks in canada, and he discovered that we in the west are completely traumatized by death, whereas other cultures walk with death their whole lives and thus death is part of the fabric of life. i saw stephen jenkinson discuss dying in madison wi, and he made me feel less terrified of dying, and insisted that death needs to be discussed, especially by those diagnosed with terminal illnesses. because as he said and i’m paraphrasing, you wouldn’t tell a mother with a newborn not to discuss her lifechanging bundle of joy in her arms. why do we in the west insist we stick our chin up and go about our daily dread as if nothing has happened after a terminal diagnosis? when in reality, everything has changed! thank you for sharing your journey leland. i too have a blog, i began it before i was diagnosed in 2009, but the more recent entries are about my travel companion melanoma. http://kindadoucheyindsm.blogspot.com . best, nicole

    • Leland on October 18, 2015 at 7:34 pm said:

      Thank you Nicole and great hearing from you. I def will check out orphanwisdom as well as your blog. Both sounds very interesting. Thanks again and best wishes!

      • nicole on April 27, 2016 at 2:47 pm said:

        hi leland, i’m nicole the gal who previously left a post on this blog entry. i just got that phone call, you know the one “hi nicole, your mri revealed a lesion on your brain and we want you to come in tomorrow to se a radiation oncologist to discuss stereotactic radioactive surgery”. it is in the cerebellum and small with hemorraggic behavior which they believe means it is a fairly recent growth. this is all at an academic institution, the university of iowa where the doc has been building a melanoma/sarcoma program since 2009 and works closely with the melanoma specialist i’ve seen at mayo clinic. i haven’t had time to even get to know him as my first consult was yesterday where he said he absolutely had to see my brain and could i stay a couple more hours to have an mri, so i did and just got the call an hour ago with the results. and i thought of you. it is only 1 tumor, so you are still winning ; ) i guess i’m wondering if you’ve had the procedure i described and any advice on managing the procedure from a patients perspective? thanks leland.

        • Leland on May 2, 2016 at 10:07 pm said:

          Hi Nicole – I’m sorry to hear this news and thanks for reaching out. That phone call sucks, there is no way of getting around it. I do have some experience with this, but nothing “revolutionary” to share. I think in hindsight the whole thing sounded and sounds worse than it is. You will get through this! Take care of yourself before and after with plenty of good rest. The good news is that with 1 lesion to treat you should be in and out of the machine in a relatively short period of time. The prep will likely be much longer than the actual procedure.
          Very best wishes to you!
          Leland

  2. nicole on May 3, 2016 at 2:11 am said:

    thanks leland. i really appreciate you taking a minute. yep set up long, and hopefully tomorrow a non-ish event. 20 minutes. crazy.

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