April 25th 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 conducting a study on pancreatic cancer patients who have decided to seek an alternative/homeopathic approach to their treatment. To qualify, you must have maintained an alternative/homeopathic lifestyle, at least, 70% of the time. If you had surgery, chemotherapy, radiation therapy that is fine, as long as the majority of your out-patient maintenance is/was via alternative/homeopathic therapies. If you are a family member or loved one of someone who followed such a program, you are welcome to also participate, 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 loved ones. Vow to always keep that feeling alive and visceral. Get out there and keep Pancreatic Cancer Awareness and Intervention alive!!!! Dad, I can't believe its been a year. I want to thank you for giving me such a fantastic life (you too, Mom!!) I miss your compassion, your wonderful humor and most importantly, your decency. The world seems a little lusterless since you left. - your son, Donald.
** I would like to thank my friends who have generously offered a donation to our Foundation to be used for education and awareness projects.