October 12, 2000
Welcome to another update of the Elmer J. Phillips Pancreatic Cancer Web Site. I apologize for the lengthy absence of an update but my clinical work and my recent branching into the studies of Homeopathy have somewhat challenged my free time and left me with little time to update the site. I am thankful that I have been able to keep up my correspondence with people who email me. I did want to update the site before the start of Pancreatic Cancer Awareness month (November, for those of you who didn't know) because I would like to have all of you join me in something I am calling, "MEDIA EXPLOSION".
Wednesday November 1, 2000 is MEDIA EXPLOSION day
MEDIA EXPLOSION is an effort to inform local news media outlets in your hometown and around the country about Pancreatic Cancer Awareness Month and to alert them about the high mortality rates associated with pancreatic cancer and the lack of public awareness that is given to this disease. This can be done via many routes. You can email, fax, write a letter, or call your local newspaper, radio or television station(s). In your correspondence, you may also indicate one of the local medical oncologist's, alternative practitioner's, or oncology surgeon's name and phone number, so that an interview can be conducted that would help to provide deeper insight into pancreatic cancer from a clinical perspective.
During the spring and summer, folks on the Johns Hopkins Pancreatic Cancer chat line tried to enlist the aid of TV talk show hosts Oprah Winfrey and Rosie O'Donnell to possibly do a show, or a segment on Pancreatic Cancer. The possibility of that happening appears to be nil. I met with a writer from the Chicago Tribune and author of many books, who has appeared on the Oprah Winfrey Show several times, to see if he would assist me in getting Oprah to do a show on pancreatic cancer. I gave him a hard copy of my dad's web site and also prepared one with cover letter to give to Ms. Winfrey. I explained to him the parallels of his father's life with my dad's. He showed interest and I truly thought he would give these materials to Ms. Winfrey. I even let him know in a letter that I wrote to him that if he felt uncomfortable doing this, he could just email me, to that effect, and that would be okay. I would understand. Well, six months later, I haven't heard a word from him. He failed to even respond to my follow-up emails.
I am giving him the benefit of a doubt that he is extremely busy and has no time to assist me. Ironically, to quote a passage from his book about a man he had tried to arrange an interview with (the subject of his book) he writes, "I wrote him letters, I left messages at his office-not just once, but periodically over the course of two decades I tried. I never received an answer. He didn't decline, he didn't explain, he didn't offer reasons. He simply didn't respond at all. Never. Not a word." Hmmmm.....?!
Our experiences are valid, unique and should be heard. Given, how many of us are virtually thrown into this experience with little to no prior knowledge or training, receive little support from outside agencies and are forced to consume and comprehend vast amounts of scientific jargon/information while, juggling emotional and financial responsibilities, it is hard not to become this type of "Army of You". I have come to discover that it takes the Army of You and the Army of Me to help the thousands of people who are affected annually with this disease. I don't solely need to ask help from Oprah, Rosie, or even Katie Couric but I do need to enlist the support of the Army of Us! As I said above, our experiences need to be heard to help the thousands affected annually by this disease.
I am asking YOU for your help with MEDIA EXPLOSION.
There are a few new installations to this site beginning with this update. The first will be called the Comfort Resource Guide. I have received numerous emails, where people find it hard to rationalize their loss of a loved one. They request literature, tapes, information, etc., that may help them in their quest for answers regarding their loved one's passing or to provide some emotional outlet. For someone losing their spouse, lover, parent or friend, it can sometimes be hard to consider the continuance of life without them. Everyday becomes a challenge because life as you once knew it, has now changed. When a loved one passes on, its almost impossible to retain a complete you. Its as if a portion of you has passed along with your loved one. They say that time heals all wounds and yes, everyday you do begin to process, or better understand your loved one's passing. Still, it is a visceral feeling and one that requires repeated visits into your psyche to try to comprehend and resolve.
I found this after the passing of my lover and more recently, the passing of my father. During the time of their illness, you act as cheerleader and attempted-miracle worker. Hoping that something you are doing will be the right thing that helps them to survive this disease. You hope, research web sites, literature, clinical trials and then work with nutrition, therapies and treatments that will keep them healthy and pain free. Then, if these fail and they pass on, you are left wondering what went wrong, what didn't I do and even more alarming, "Where was my time with them tying up those loose emotional ends?". You have been operating on overdrive for so long and suddenly, you drop from "100 to 0 mph" in a second!
Now, I find that there are many things, questions, etc., I want to know about my father and I try to convey these questions/issues to him in prayer. Sometimes he appears in my dreams but its never to address these concerns or let me know that he is okay. "Is he happy with new decisions I've made?" or any number of issues I want to discuss with him. I trust that small enlightenments that are realized by me are done with his help or guidance.
Shortly after his passing, I found myself needing some release. I needed to feel devastated. I also needed to understand his passing and what he might be experiencing at that particular moment. There is a phenomenon that occurs during a loved one's devastating illness or passing. It can only be described akin to the angel/devil complex! It is the emergence of a desire to begin a healthy lifestyle; start taking vitamins, change your eating habits, and exercise. On the other hand, you also have this desire to show anger or self-destruct; you want to smoke cigarettes, binge out, get drunk, get high, engage in high risk behavior. I felt these, and have received emails from others experiencing these same conflicting urges. Thankfully, I didn't engage in the latter desire but I didn't totally immerse myself in the former either!!
I decided to probe deep inside my shock and sadness to find the roots of these emotions. I found my support through film. I watched an incredible movie by Andrei Chekov called "Mother and Son". I previously saw it two weeks before my father's original diagnosis of Type II diabetes (what became the precursor to his Pan. CA). It is a Russian/German film about a mother's last day alive and how in her cachexic state, she and her son revisit the surroundings of her home for the last time. He carries her to see the nearby mountains and stream, she gets to experience the feeling of wind, etc. It is such an incredibly moving film. With the film's pacing at "lethargic tortoise speed", it is an exercise in patience. Its truly connotative of figuratively "stopping to smell the roses!" The cinematography is astounding. I remember thinking, while originally watching the film, about how I might feel if one of my parents were sick and near death? Little did I know that two weeks later I would be catapaulted into that experience. Oddly, a local university showed the film three weeks after the passing of my father. It had a more profound meaning for me upon the second viewing. In my mind, I was carrying my father, rediscovering old familiar events and expressing things I wanted him to know about me that I didn't find the opportunity to convey to him during his last few days alive.
I also watched a video, ONE TRUE THING, with Meryl Streep, about a mother's illness, a child's responsibility to care for her ill parent, the discovery of familial traits and the mother's eventual passing from cancer. This was sure to bring the eyes to full flood and it did. It was just the type of movie needed to tap into my hurt and loss and let me release all the anxiety that I couldn't bring out on my own. I also watched the video, "Conversations with God". This was an amazing video about what to possibly expect when crossing over. It really helped to ease my mind about what was possibly going on with my dad. It really helped me to realize that my dad was probably not alone and in good hands. It has truly helped me to feel more positive about my dad's passing - knowing that my dad is in that "better place".
There are many resources that I've used since that time and I am listing them in this guide. I would like you to share your comfort resources with this site by submitting them to me at the following email: firstname.lastname@example.org or you can post them on the message board. All submissions will be greatly appreciated by me and I'm sure, the other visitors to this site. Whereas one of the goals of this site is to provide assistance to those who are challenging pancreatic cancer, there is also a need to address the issues of after-death damage control. Often times, this is where the real work comes into play.
The second new installation this update is a medical reference of conventional and holistic medicine web sites. I would like to ask you to submit any web sites that you utilize and do not see on this list. I am looking to create one of the most comprehensive medical web sites home libraries available.
The last new installation is something I am calling, "Have You Heard?" There are times when I'm perusing newspapers, medical journals or magazines and will come across articles pertinent to pancreatic cancer. Have You Heard, will cite these articles with the publication source, date and page number(s) of the article, and will also give you a brief synopsis of the article. I would also appreciate your "news" items. You can submit them to the email address or to the message board.
In closing, I hope that you will participate in MEDIA EXPLOSION. Recently, there have been some high-profile people who have been affected by Pancreatic Cancer. Their notoriety draws some attention until the next news event occurs. Pancreatic Cancer affects around 29,000 people annually. Around 2% of that number survive a 12-month calendar period. Included in that number is a member of your family or the loved one who made your life special, the father or mother who helped you to become the person you are today, the friend who was there for you when no one else was. I want you to think about that person and what they had to go through with their challenge with Pancreatic Cancer. Then, think about the next person who will get the diagnosis of Pancreatic Cancer today and their loved ones who will be told by that person, that they only have six months to live. Think and remember how this one phrase will forever change their lives. This cancer is so obscenely underrepresented and under-supported by the media, research funding, cancer agencies, doctors and the list goes on. It is time to become outraged and to become proactive.
I wish you a most meaningful and productive Pancreatic Cancer Awareness Month.
God bless you all and remember:
Become Informed, Challenge Pancreatic Cancer
April 21, 2000
April 25, 2000 will be the one year anniversary of my father's passing from pancreatic cancer. This year has been difficult. I am amazed at how my father's immediate absence from my life has affected me. I thought I would be farther along in my grieving, and moving on more than what I am. In many ways, it still feels like only yesterday that my family was frantically scouring through reams of research papers and conducting countless internet searches in hopes of finding some treatment or therapy that would save our father's life. I, still, act on the optimism and hope for the untapped resources and information that is yet to be reported and utilized in the area of pancreatic cancer treatment(s) and therapy(s). I receive many emails from those who visit the site and its always interesting to see that the one word most frequently used in the opening lines of people who write in, is the word, devastation. "My family is completely devastated", or "I am devastated over...." I think that may have been the word that my family and I used upon hearing my father's diagnosis.
As you know, this cancer replicates and metastasizes like wildfire. You need to act immediately in order to have any fighting chance of extending your life or to even think of surviving this cancer for the long-term. There is so much to learn and know about this cancer and you are required to virtually learn it overnight, it is overwhelming when you think about it, and worse, devastating!! To the newly-diagnosed, this is a rather daunting expedition. There is a plethora of considerations and decisions; standard medical practices, homeopathic/alternative practices, or the integration of both and at what time during the treatment process. There is the consideration of clinical trials and their eligibility requirements, issues of nutrition and most profoundly, treatment/lifestyle options versus financial resources.
Having this web site in operation for the past nine months, has given me time to conduct a needs-based assessment of what the direction of this site or the goals of a pancreatic cancer web site should be. Originally, I wanted to provide a site that had an organizational checklist so that one could act fast in locating a medical center for treatment and then be able to make living, travel and financial arrangements in an expeditious manner. This helped our family out a lot but involved a number of phone calls. Here we've provided a checklist, where you can get things done in an expedient manner. I felt that by using my medical education, my radical tendencies and personal "war wounds", I could create an effective and comprehensive site that would act as a one-stop resource for the newly-diagnosed and their loved ones - I think that has, somewhat, been accomplished but kudos must be expressed to some of the sites out there that have incredibly in-depth information, from a scientific perspective. These web addresses have been added to the resource section of this site.
I am amazed by the number of web sites out there. I recently did a search on the Alta Vista and Excite search engines and came up with over 100 sites related to pancreatic cancer. There are some very good sites but, I've also noticed that there is a lack of integrative treatment information out there. What I mean by integrative, is the combination of standard medicine and alternative medicine. I feel that it is important to be aware and open to both areas of treatments. Also lacking, are the experiences of previously diagnosed patients and their loved ones.
I've come to recognize two phenomena about cancer and how it plays itself out in the human condition. You have those who are affected and devastated at the announcement of the diagnosis. They do all they can and search out information, via a number of different venues. They remain dedicated to the survival of their loved one. Sadly, if their loved one dies, then so does their mission to remain involved in the challenge of pancreatic cancer.
I know that it is hard to keep in the cycle of pancreatic cancer after your loved one has passed on, but it is important that we make ourselves available to pass on our experiences, opinions and guidance to the future families affected by this dreaded disease. Pancreatic cancer may only affect 29,000 lives each year but nearly all of those people die by the end of their first year, post diagnosis. This is outrageous, even the better known cancer agency doesn't appear to invest a whole lot of hope in pancreatic cancer survival and has little to offer its callers. Well, I must, at this point, mention that I've met 7 people who I communicate with on a regular basis, who have surpassed the 2 year post-treatment mark and are doing great! This type of information needs to be disseminated to the public affected by pancreatic cancer and the public in general.
I am requesting long term survivors, 2+ years post-diagnosis, to contact me and enroll in a research study that I am conducting on pancreatic cancer survivors. Also, I am conduct provided you have a clear recall of the therapies used. Please write to me at email@example.com for an application/survey.
For previous visitors to this site, you will notice some additions and changes. I have added a "gripe" section, where I will report on often-mentioned gripes that people have indicated on other sites. Sometimes, I will interject a personal commentary on the issue, supply the inquisitor with references to their inquiry gripe, and will always be happy to post your gripe! Please write to me at firstname.lastname@example.org.
I will be reporting on clinical trial updates in the near future and the exciting developments on the drug, Irofulven. More data should be made available on this drug at the American Society of Clinical Oncology meeting in May.
Let me close this installment by saying that I hope you all will remember how you felt the day that diagnosis of pancreatic cancer was presented to you and your l tion to be used for education and awareness projects.
July 23, 1999
In the weeks and months to come, I will be adding new features to this web site to help you in your day to day life with pancreatic cancer. I will be conducting interviews with professionals from the following areas: Medical Oncology, Pancreatic Surgery, Radiation Oncology, Nutrition, Holistic Medicine/Alternative Therapy, Pain Management, Health Psychology, Estate Planning and Hospice Care. These interviews can be accessed via the link entitled, "Ask the Professional". The content of these interviews will focus on the questions and concerns that patients and their families have emailed to me. I will also ask the professional to give their suggestions, from symptom to treatment, on what and how to ask for relevant information and what to expect from their physicians. I will also attempt to seek the professional's opinions on cross-disciplinary therapies, examining their personal feelings regarding the above mentioned disciplines and their relationship to pancreatic cancer. To ensure that the most candid and helpful information is obtained, I will allow the option for the professional's identity to remain anonymous on this site (the professional's identity will be kept on record). If you have any questions or issues that you would like addressed, please email them to me at email@example.com.
I would like to thank those who have corresponded with me and asked to have their links added to this site and have offered to add this site to their list of links. As previously mentioned, it is the goal of this web site to serve as an information exchange forum where; ideas, recent findings, personal experiences and professional input can help create an information source that considers pancreatic cancer from a patient's perspective, as well as, a biological approach.
Donald Scott Phillips
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Site created 07/03/1999
Last updated 03/08/2002