Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
It has been ten years since Dutch Helms, having been a laryngectomee a couple of years, sat down at his computer, which he was learning to use, and decided that with his new web site, he might be able to reach out to the world. He didn’t know other laryngectomees, had no support group and could find little on the web written for the patient. His call was basically, “Is there anyone else out there?” He got an answer from a guy in Texas, one from England, and another, and then another. They had computers and were laryngectomees, pretty much alone in their areas, and were looking for friends and answers. They found both.
Never, in anyone’s imagination at that time, could they picture what that would become, a person-to-person contact over the Internet that would create friendships among hundreds of people with similar problems. This was the snowball starting from the mountain top and it took on a life of it’s own. As the membership grew, so did the ways of making contact change and Dutch adapted each new change to make the group, which became WebWhispers, easier to find, simpler to use, and more educational.
As others joined, they brought new ideas and, as Dutch expanded the web site, adding new sections and more help for laryngectomees, the email list of names became a ListServ, enabling the contact of a whole group of individual members using just one simple address.
During all of this time, as other workers joined and took over responsibilities, Dutch has remained the Webmaster and the Listmaster, still taking care of all of the mechanics of what has grown into a huge website and a large, ever growing, membership.
WebWhispers will survive Dutch, as it will all of us and it will be here for much the same purpose that it was in 1996, all because one man planted a seed and tended it as it grew.
About a year ago, Dutch wrote an article for August 2005 HeadLines about his swallowing problems. I had asked him for great detail because so many of us have some extent of these same type problems. He followed in October with another article. Both of these may be found at the HeadLines Index on the WebWhispers site. http://webwhispers.org/pages/Headlines/HLIndex.htm
A few weeks ago, there was a message in the WebWhispers List from Dutch explaining what is happening now and the news is not good. He does have recurrent cancer and there is no treatment available for it. The full letter is below and, as you will see, Dutch pulls no punches in explaining what is happening and what will happen.
Dear Webbies .....
SHORT SUMMARY: Yes, my fistula problem is sort of resolved now, but further investigation at MD Anderson revealed that I have rather extensive recurrent cancer about which, for various valid medical reasons, little can be done ... a situation that presents challenges to not only me, but also, to a certain extent, to WebWhispers as well. The full story is presented below.
THE FULL STORY: As most of you are aware, I have been dealing with a pharyngocutaneous fistula problem since mid-Janaury 2006. A short summary of the situation was in the March 1st, 2006 edition of "Whispers on the Web", ( http://www.webwhispers.org/news/mar2006.htm ), in my monthly column: "Dutch's Bits, Buts, & Bytes" ... look for the article: "Large Cave Discovered in Webmaster's Neck", if you need some background on it.
In late March, I began serious treatment and consultations at MD Anderson Cancer Center in Houston, TX. Working with both the Plastic Surgery Clinic and the Head and Neck Surgery Department, my primary physician was Dr. Weber, the Chief of Head and Neck Surgery. I underwent numerous tests, evals, exams, CT Scans, PET Scans, and radiological and chemotherapeutic consults all during April and May. Throughout the entire process I received nothing but EXCELLENT care from probably the best, most knowledgeable, and most caring and courteous cancer-specialized medical staff in the country. They left no stone unturned and my Mazda Tribute SUV learned to make the round-trip drive between El Lago and the MD Anderson campus almost unassisted. (Amazingly, on most days, I managed to avoid the infamous Houston "rush-hour traffic" - thus, "road-rage" was also avoided almost completely!)
Well .. I had the anticipated "Come To Jesus" appointment this past Tuesday with Dr. Weber. It was scheduled for 11:30 AM and, IAW general hospital tradition, I finally got into see him around 1:30 PM. All the "evals," "exams" and "tests" had now been done ... so this appointment was to discuss the "findings" and the "recommendations" ... to bring everything together into the "Big Picture."
First ... The general "fistula" problem. Due to the poor condition of the tissues in and around the fistula itself, it was found to be inoperable and untreatable. Thus, it shall remain with me "as is." All I can do is to continue to cover it appropriately with tape and cotton padding and will thus be using my PEG tube (stomach feeding tube) to take liquid food and drink for the rest of my life. In short, the fistula cannot be repaired/closed ... period. Bottom line is - no more Thin-N-Crispy Sausage Lover's Pizzas w/ extra Cheese and Sauce, Texas Chili, Big Macs, Oysters, King Crab Legs, Soft Tacos, Bratwursts or Weisswursts, Wiener Schnitzels, New York Strip Steaks, Hot Dogs w/ Cleveland Stadium (Bertman Ballpark) Mustard or even Krispy Kreme Doughnuts, etc. Just a lot of water, Boost, Ensure, ProBalance, injected through the PEG tube into my stomach. (I will have to content myself with watching the Rachael Ray shows on the Food Channel)
Second ... there are signs of active recurrent cancer in and around the fistula site and in a few other locations within the neck tissues ... and indications of a spread to one lung. When this recurrence began is anyone's guess ... although the evidence points to late 2004 when I first started to have swallowing problems and problems speaking effectively via my TEP/prosthesis. In 2005, an esophageal stricture had clearly developed -- between the TEP site and the base of my tongue -- and so, in 2005, I underwent six esophageal dilations (each about 60 days apart) to try to permanently open this stricture. These "fixes" were only temporary in duration ... however, the several biopsies in that area during 2005 did NOT reveal any active recurrent cancer.
The fistula opened in early 2006 and an attempt was made on 31 January to close it surgically. This was unsuccessful ... but again, no recurrent cancer was discovered or indicated. This impression, however, changed during the extensive evals and tests at MD Anderson.
In short, what MD Anderson discovered was that recurrent cancer was indeed there. And, probably due to my previous radiation (and the tissue damage done by those treatments in 1993), this recurrent cancer cannot be treated by MORE radiation in that same area. Additionally, meaningful surgery is not an option, nor is meaningful chemotherapy -- due to the poor tissue conditions in the proposed surgery sites. In short, the recurrence is THERE, but nothing can be realistically done ... except for "pain management" ... palliative care. So, I am already working with MD Anderson's Pain Management Clinic and "so far, so good." I am now on a combination of Hydrocodone liquid and Fentanyl Transdermal Patches. These meds control the "pain" (primarily in the neck and shoulders) which did not really begin or become noticeable until mid/late April, very well. I now wear the patch all the time, changing it every 3 days; this is supplemented by the Hydrocodone ... 15/20 cc about every 3 hours during the day and 30 cc just prior to hitting "St. Mattress of the Springs" each night.
Third ... the PROGNOSIS: Well, since "nothing can be done," it is apparent that the condition is "terminal" ... eventually. Neither Dr. Weber nor his staff were prepared to give me any "estimate" as to "WHEN" ... it is simply too complex with too many unknowns. Things could go "quickly," due to a sudden hemorrhage or a similar tissue failure, or things could move very SLOWLY over months and months ... just a slow deterioration over time. They simply do not know and cannot predict. Their only "plan" now is to see me again in about 60 days (with another CT Scan at that time). It is foreseen that, at some point downstream, I would likely enroll in an "outpatient hospice program" with eventual placement in an "inpatient hospice program" - using a hospice program of MY choice, if or when appropriate.
Fourth .. HOW AM I DOING? Well, physically, I have verified recurrent cancer and am in some pain ... but the pain is under control, thanks to the medication. Again, physically, I would estimate that I now can function at about the 80% level, most of the time. Mentally, psychologically, and emotionally, I am fine ... NOTHING said on last Tuesday by Dr. Weber came as a real surprise ... I was fully prepared to receive and accept this "news" ... and am truly thankful for everything MD Anderson has done ... and have NO COMPLAINTS. I now will simply play my cards day-by-day and see how things go ... doing what I can, when I can, how I can and for as long as I can. My biggest disappointment ... NO MORE GREAT FOOD OR DRINK!! I sure will miss EATING, DRINKING, and TASTING!!
Being single, a VIRGO, and an ex-military guy, my "personal stuff" is relatively straight-forward and fully organized and "in order." Anything that could have been reasonably pre-planned, pre-arranged, and pre-paid has been so accomplished for some time now. My best friend for the last 50 years (and his family), who is also my Executor and the holder of my "general and medical powers of attorney," lives but one mile away --- so, for "those things" all is well.
As to WebWhispers ... the other officers are fully informed and up to speed ... and have been all along. We all have had "contingency plans" set up amongst ourselves ... to cover such eventualities ... with lists of "things to do" should something happen to one or more of us. So, WebWhispers is and will be FINE!! Obviously, I will gradually divest myself of many of my long-standing WW duties and responsibilities and pass them off to others. We have already begun to expand the number of "qualified Moderators" available to serve us effectively with the Mail Lists and the Executive Committee is already looking seriously at a possible major redesign and restructuring of the web site itself ... one less dependent upon a single "Webmaster" and with more people eventually involved in the web site's management, maintenance, and editing processes. So, over time, and in an orderly process, I will also ease out of my "Webmaster" responsibilities ... eventually turning them all over to others who can and will "carry on the WebWhispers mission in the WebWhispers tradition." I only ask that, if your WW officers ask for your help or assistance with any of these tasks, you'll find some way to help out, if you possibly can.
So ... now YOU know what I know ... and what the other WW officers know. Obviously, there are probably MANY questions you might have that neither I nor they can yet answer adequately. But, these will all get sorted out over time. Fellow WW Officers Pat Sanders, Terry Duga, and Libby Fitzgerald are now on the WW 2006 Alaskan Tour/Cruise and will be discussing the WW's "future options" a lot while on that trip and, when they get back, around 13-14 June, will pick up the continuing discussions with Murray Allan and Herb Simon ... so a LOT is now and will be going on behind the scenes. But .. the bottom line is that WebWhispers will be taken care of ... it is and will remain in GOOD HANDS.
Thanks for listening .. and thanks for all the kindness, prayers, and support. There is no need to bury my Mailbox ( or especially the general WW/WWHH Mail Lists ) with good wishes or positive thoughts ... I ALREADY know how you likely feel. Plus, I still plan to be "around" for quite a while yet. However, if you DO feel the "need", please send them to me directly and privately -at: FantumTwo@aol.com. (Note: The WW EC is apparently working on an even better option, so stay tuned soon for THEIR announcement.)
I did, however, want you to give you all the NEWS and to know, as best I can tell you, "what is up" and "why." Thanks again and God bless you all!! 'Til later!!
PS: At this point, I still plan on attending IAL 2006 in Schaumburg, IL, and the WW Reception and Banquet in late July 2006. Of course, this will all depend upon what "happens" here, on the ground, in the interim.
As to the future:
Being his usual caring and efficient self, Dutch is working behind the scenes to turn over many of his responsibilities to others, to train list moderators, and be sure that instructions are left for our learning process.
It is impossible to tell you everything Dutch does but it is certainly the work of 3 people. Being Webmaster is a full time job. So is being Listmaster. He is Co-editor of Whispers on the Web, the person who manages all of the extras, like the Delphi Forum and the Guest Book. He sets up and makes all of the entries for the WW Dinner and Cruise pages, enters all of the new members, adds and subtracts them, changes email addresses and sends all changes in for the lists. Writes and puts notices for everything in the lists. The duties are endless.
We are working on getting a new website that will allow easier additions and editing. The content transfer from old to new will be something we hope to be able to do with volunteers who are able to use something as simple as MS Word, a common word processing program. Changes of this magnitude are invariably expensive when hiring professionals to assist. We will have a company who will handle the redesign, train us, be on call for consulting and, yes, it will cost a good bit initially. We will know much more about this soon and will be asking for donations to cover these major changes to a website that selected members can manage without having formal webmaster experience, but backed up by professionals. (For the techies, take a look at a new Adobe program called Contribute).
Pat Sanders, editor HeadLines and co-editor Whispers on the Web with Dutch Helms
B’ham: Pat Sanders, 205-980-8416; email@example.com
All That Jazz...and More
The IAL 2006 Annual Meeting/Voice Institute/
Wednesday through Saturday,19-22 July 2006
Schaumburg, NW suburb of Chicago