The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

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Monday, August 27, 2012

Of Roller Coasters, Cancer and The Linux Community

I've sat here, looking at a blank screen for about 10 minutes.  Usually, when I write a blog post or make an announcement, it just flows from fingers to pixels and I am done with it.

This time, it's not that easy.

 A fairly well-known person in my circle of friends and associates once criticized me, less than gently, that I never passed up a chance to say in 1000 words, what could be said in 100.  True.  Guilty as charged.  I tend to be verbose at times.  Go get something to drink or a sandwich.

This is going to be one of those times.  I want to thank you.

A lot of you.  The guy to your left started it.  His name is Thomas A. Knight, author, tech guru and treasured friend.

See, I've just experienced the power of the Linux Community.  Not the Internet per se, although that was the medium.  When Thomas A Knight banged out an appeal to help me with my cancer medical costs, all he really hoped to achieve was obtaining me a special monitor that was illuminated from the side instead of the back.  Chemo residual effects have caused me not to be able to focus on any back-lit screen for more than 10 minutes.  He also asked, just in the event it might help, if the community could raise the money needed for life-saving surgery and medications.

He had no expectation of that happening.

A guy who I have been corresponding with for many years decided it would be a good idea to start an Indiegogo campaign and see if he could not bring this request to a wider audience.  David Rea did just that, and took on the task of helping administrate the campaign as well.  David put hours and hours into publicizing and promoting the project.  Once that happened, then long-time friend and Seattle-ite picked up on a suggestion to submit it to Reddit.  From there, I get lost with the who's and the whens.

It all gets jumbled in my mind from there.

Reglue volunteer Zeb Swaim and his wife are both extremely active on Twitter.  Zeb's wife has over 13 thousand followers and tweeted about this and then the blogs started.  It was from those tweets that the responses first began coming in.  I do sincerely apologize if I leave anyone's efforts out.

It just took on a life of it's own.

I am active on Google+ much more than I am on Facebook these days.  These are my peers and my mentors and I not only enjoy their company, I learn more in 30 minutes on any given day on G+ than I do on Facebook, or any other place for that matter.  It is through G+ That I met Maxx Daymon.  Maxx threw his whole being into helping us get this project going.  More importantly though, Maxx shared with me that he has been through almost the exact same illness I have, and has had close to the same surgery I am now facing.  Maxx not only gave of himself to help us raise money, he gave me hope that this cancer, this foul son of a bitch that has invaded my body.....

He gave me hope that it can be beaten.  That is worth any amount of money I could have at my disposal, for medical needs or otherwise.

But this is where the really good stuff started to happen, and it gets a bit confusing so I will try to convey it as accurately and simply as possible.

I received a phone call from a guy that said he was a friend and a patient of Doctor Peter D. Scholl.  All of his kids were treated by him and that he was a fantastic Doctor.  Fantastic to the point of being judged to be in the top 10% of his specialty in the US.  I hesitate to use the man's name as he did not give me explicit permission to do so, and being so, I will err on the side of respect.  He told me that Dr. Scholl was interested in talking to me about treatment and that I was to call him at his office the next day.  I did and within 2 days I was sitting in his examination room...

With a 12 inch flexible, lighted scope shoved up my nose, routed down my throat, and wondering how something could hurt so badly and not bleed.  Diane sat in the chair against the wall, both mildly amused by my foot-wiggling and doing her own bit of squirming, imagining what it must be like to have a garden hose shoved up your nose...or so it felt. 

Examination finished, Dr. Scholl made arrangements to see me in a couple of weeks to discuss treatment options, of which complete removal of my larynx and multiple lymph nodes was one.

He called me the next day.

After considering his examination, Dr. Scholl told me that although there may be some cancer metastasis, it was not as dire as my Oncologist believed.  This of course, is the luxury of being able to get a second opinion.  An opinion, mind you; that I would have never received had this donation campaign not gone public.  My Oncologist is an excellent doctor but not specialized in the field of Dr. Scholl.  it was decided that I could receive injections of Cetuximab to all but halt the growth and spread of the cancer while he ordered, studied, evaluated and planned the course of action.  While there may be a need to remove a small portion of my Larynx, he believes that it can be cured by doing so, along with surrounding lymph nodes.

a laryngectomy is a horrible procedure for the patient.  it can adversely affect his quality of life, for the rest of his life and Dr. Scholl believes he can cure me by only removing a small portion.

I can't tell you how relieved I was to hear this news.  Cetuximab treatments are outrageously expensive.  We're talking about 3000 dollars per treatment regimen, but that's not a worry any more.

Thanks to you.  

In 6 to 8 weeks I will be re-evaluated and scheduled for the appropriate sugery, after another PET Scan at 4500 dollars, after another CAT scan, at 1800 dollars, and all the lab work that will ensue.  But that's OK...

Thanks to you.

My special thanks to Matt Hartley who not only helped spread the word (saw it in real time in Google+ Ripples and it was amazing), he interviewed Thomas Knight on his Linux Action Show and let people know just how friggin awesome you people are.

I would be a terrible person if I did not mention one other shining light in this darkness.

One of my blog readers, in fact, many of my blog readers are doctors.  One such doctor is Dr Santam Chakraborty, Assistant Professor with the Department of Radiation Oncology, Malabar Cancer Centre in India.  While Dr. Santam could not offer any suggestions or treatment options due to the distance between us, once he found about the possible need for radical neck dissection, he contacted a surgeon friend of his who practices in India as well.  Dr. Vinay Kumar, who is the Senior Consultant of Radiation Oncology at his hospital emailed me and very simply stated:

"Being a friend of Dr. Santam, you are also my friend and don’t worry about finances at all.
Come to me at the earliest."

I applied for my passport that same day.

Fortunately, a trip to India was not in my future, but caring people who hold value in what I do, took it upon themselves to help me.  Both of these men will have a special place in my heart, for as long as it beats.

Thanks to you.

I know there are others that I should mention, but it would take hours of combing through emails, donation posts, blogs and articles to get it right and my attention span is simply not up to it.  if I have slighted you by not making mention of your contribution, please let us know in the comments.

I don't want or need any more money.  Thomas and I decided that donations should be stopped when we reached, the then unheard of amount of 50 thousand dollars.  We did that early this Sunday morning.  Please do not send any more money, I am fine.  If you wish though, you can still donate to the HeliOS Project/Reglue at the upper left of this page.

Now, months ago, a few of you asked me if I had a "bucket list".  While I chose and still choose not to frame my illness in that light, I didn't have to think about it at all.  I have been wanting to visit with my good friend Larry Cafiero since our last work collaboration in California in 2008.  When I made mention that I wanted to attend a 3 game series between the San Francisco Giants and the Houston Astros, Larry made it happen.  Larry is, at this moment on a train bringing him to Texas and has picked up the entire tab for our 3 days at the ballpark...hotel, food, the whole ticket.  I told him that he didn't have to do this but he stated he would have just blown the money on a new laptop he didn't need anyway.

So, i am going to take a mini vacation in Houston starting Tuesday.  This emotional and physical roller coaster I've been on has slowed to a comfortable speed and appears to be stopping.  Larry and I will be at Minute Maid Stadium celebrating the end of one ride, and possibly boarding another.

But being in Houston, with a treasured friend.....

Is a good place to pause between rides.

All Righty Then


Swift Arrow said...


I just want to say that I'm really glad that the Linux Community is a real Community.

I also wanted to comment about India. MRI / CAT scans here cost similar in numbers, but different currency, i.e. about 1/50th of what you're paying there. Health care in India, particularly Kerala, is really good. Many people come here (yes, I'm in Kerala) for health care alone.

Meantime, I'm glad you've got a good doctor there, and I hope your Larynx can be saved! :)


Thomas A. Knight said...

Well said, Ken. Well said.

I applaud the community for this effort. It was successful beyond my wildest dreams, and not because of me. Not even close. It was other people who took the torch and spread the fire.

Here's my thank-you to the community:

And again here:

Thank you. Everyone.

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Anonymous said...

Ken, we're all behind you, be brave, get well, you're an inspiration to all of us gnu/linuxers... we're proud of you!

Marcel Gagné said...

Just get better, damn it!

-- Marcel Gagné

Anonymous said...

Hi Ken. I am glad to hear that things are much better for you! I am happy that I could play a very very small part in that. You have done great work that helps others a lot. You (and Helios/Reglue) have changed many lives for the better. It is only proper that others should help you when you found yourself in dire straits. I am glad that your friends and we of the Linux community could be of help to you.
Get well!

Engineer Kris - Cyber Line said...


I mentioned your plight on my segment on Cyber Line last week. I don't know if it helped any or not, but we want to have you back on again when we get another affiliate in the Austin area.

Get well, my friend. We're behind you.

ebrke said...

Ken, so glad to hear the good news!

stcm1940 said...

Good news so far, and I hope you/it get(s) better.

Santam said...

Good for you Ken. I agree with swift arrow that you can get good health care uin India at a cheaper cost (mainly due to the exchange rate difference) fact remains as an oncologist I know how important it is for a person who is to have major cance treatment to remain as close to friends, family and the familiar home as much as possible. I am very glad that the community stepped up and helped you when you needed it most as you have helped so many others in the past.

Anonymous said...

Good to know community stood up to its values.

Kerala and Keralaites are passionate people, a uniqueness in India. They were earlier famous for Govt. level adoption of Linux too.

Best wishes for an early recovery...

Dani said...

Wow. That's all I have to say. Wow.

Curt- said...


Jodie Cunningham said...

Ken, I am so relieved that you will get the treatment you need.

You are an inspiration, and I can't wait to see what you will do with Reglue in the future.

Jodie Cunningham said...

Ken, I am so relieved that you will get the treatment you need.

You are an inspiration, and I can't wait to see what you will do with Reglue in the future.

Anonymous said...

I am sitting at the front desk volunteering my time with the American Cancer Society here in Campbell California. I am so glad I came a cross your blog today, it has shown me that there are still so many great people out there still willing to help others. Good luck in your fight, I know you will win. I support you and the Linux Community in all ways but one. Go Giants!

MrVertigo27 said...

erm, the blog posts that a long time friend and Seattle-ite posted on Reddit I don't mean to come off wrong and I don't want to be named on your blog but... I've never met you, and don't live in Seattle (I'm a huge fan though). I am more than confused as this was posted by me again, i would just hate to think someone is taking credit for something they didnt do.

Unknown said...

My heart felt thanks goes out to the community. Ken is truly deserving of our gratitude and support. Keep on healing Ken.


Thomas A. Knight said...

MrVertigo27: Your post did indeed drum up lots of support for this campaign, but there was another one that was posted by "zfk" three days prior to yours. (

I presume this is who Ken is talking about. :)

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