louise

If the plan is so good, why are the politicians proposing the plan exempting themselves from it the way politicians exempted themselves from the general social security program?

Ideas are great! Is it time for an action plan? How many could be in Chicago for the game day? Who will write the piece for the program? How many letters should be written to the team? Who should be addressed at the team? Who will write to the Payton Foundation? Lots of questions, but if we are going to get something done by November 1, shouldn’t we start now? I copied info from the Payton Foundation Website here. Since there is a name and e-address for an events planner we might want to start there, with Nancy Wilson, at end of copied info.
WCPF Phone Number:
847.605.0034
WCPF Email:
Information@Payton34.com
Fax Number:
630-552-7618

Postal Address:
1905 Marketview Drive, #234
Yorkville, IL 60560
(Letters & Small packages/boxes may be mailed to this address)

WCPF Warehouse
(Space donated by Leader Express)
Wood Dale, IL 60191

WCPF Staff:
Connie, Jarrett & Brittney Payton – WCPF

Kelly Woods – Director WCPF

Nancy Wilson – Office Manager & Event Coordinator
Nancy@Payton34.com

Depression can be a very normal reaction to the diagnosis of a terminal disease. How any diagnosis or treatment affects an individual will depend also on the individual, their willingness to fight, their stage, their knowledge of what is going on, and their hope. As for the medicines/chemo, reactions are also difficult to predict. You didn’t mention his age, but that can also be a factor, especially if expectations had to be changed. If he’s been working hard to afford an early retirement or a special trip and now feels those things won’t happen, that would cause anyone to get depressed. It is worth mentioning to the staff when he goes for his next treatment and to the doctor.
Where VA is concerned, I’m not sure if cost conscious-ness is a piece of the puzzle, but VA is another area hard to predict.
I’m so glad you found us, but sorry you needed to. We’ll answer any questions we can, but most of us are not doctors, so learn what you can, make your list of questions, and take them to the doctor when you go. Having the list handy can be very important, because most of the doctors related to the military are overbooked and won’t wait for you to remember what you wanted to ask. Your questions may also remind them of something they skimmed or heard alittle about.
I had the combination of Gemzar and Cisplatin, and it worked well for me. I would encourage you to ask about it, too.
Louise

When the Olympic torch makes its way to the olympics, it is done as a relay. I doubt many people who come here regularly have the resources for a months-long event, but if the section for each individual involved only took a day, many of us could. Might be an organizational nightmare and we would need quite a symbol to carry as well as a great destination. If each participant were a patient or a primary caregiver honoring one specific patient, a log or diary of the event with signatures/stories from all, maybe including news reports from the towns visited, could be an ongoing marketing piece. Maybe even 3 simultaneous legs, converging on St. Louis, one from Maine, one from Florida, and one from California? Or could the destination be a famous cancer center?
I would love to be involved with such an event, but I do not want to take the lead in it.

Amy,
I understand the fright in the genetic question. I recently asked my oncologist about maybe getting a genetic test, because my mom and I were both diagnossed with cancers in the adenocarcinoma family. Mom’s oncologist suggested looking for a permutation in the P53 gene, but I was asking my oncologist about it and how to get such a test. Her response included the following:
Genetic testing can easily run into thoursands of dollars and insurance will not typically pay for it.
Cc has been relatively rare and genetic testing needs thousands of samples before “norms” and “mutations” can be distinguished.
Even when genetic testing for breast cancer identifies a mutation, it does not guarantee that a person will get cancer, just that the risk is a little higher. The increased risk only serves to suggest more frequent monitoring to support early detection but there is no vaccine or preventative medicine.
Though thousands of genetic samples had been collected in the search for cures of the (more common) breast cancer and ovarian cancer, the gene marker for the BrCa1 and 2 were only identified after someone thought to look only at samples from people whose diagnosis came before they turned 50, suggesting that non-genetic factors also contribute to the occurance of cancer.
Therefore, my oncologist did not encourage the genetice testing, even though she knows of my family connection and how many people are in my family (I have 4 brothers, 3 sisters, 6 kids, and 1 grandkid so far).
In other words, your risk of getting this cancer is probably no higher than the risk in the general population. And the knowledge you gain by dealing with your Mom’s cancer and learning all about it probably offsets what unmeasurable increase in risk might exist.
I was prepared to have the genetic testing even knowing that their is a cost but the benefit is not guaranteed and would probably not occur in time to help even my own grandson. However, until enough people demand it, someone is interested in researching it, funding can be secured for it, and some sense of cost/benefit analysis tips the scale in favor of the research, such testing is unlikely to happen. So for now, I am not scheduled for any more genetic testing.
To some degree, my doctor’s response disappointed me because I would like for someone to benefit from my experiences. But I am an accountant, and the cost/benefit analysis was clearly understood, so my questions were answered for now.
This may be one of your longer replies to this question, but I hope it addresses the issue to provide some satisfaction.
Wishing we all had answers to our questions.
Louise

Melissa,
How old is your grandmother? I ask because quality of life is also a factor. If the treatment options would only serve to prolong difficult days without enjoying very many good days, she may be right in refusing treatment. The decision should be hers. My mom did not want much treatment, no radiation or surgery. Her oncologist thought she would not last a year, but that has been almost 3 years and she hasn’t gone yet. It is that unpredictable. If the refusal to eat is related to depression or choosing to starve the cancer, tempting foods with a variety of colors, shapes, textures, etc., especially things you know have been favorites may be enough. However, if the tastebuds have been affected or nausea is a problem, sucking on hard peppermint can help settle the stomach.
Hope these ideas help. I know, watching someone we love go through suffering and not trying to make it all better can be extemely difficult! That’s where we are with my mom, and she’s 88.

You and your family are in my prayers.
Louise

My tests and treatments have been at the Goshen Center for Cancer Care.

My surgeon is Dr. Daniel Diener. Dr. Richard Hostetter assisted with the diagnosing surgery May 29, 2007, and he will pray with his patients who ask him to do so.

My primary oncologist is Dr. Carol Westbrook, and I love her!

My primary radiation oncologist is Dr. James Wheeler, and Dr. Brown has assisted him. They are caring men who both go to my church.

Dr. Michael Hall did most of the stent work (I have a stent in each branch and 2 stents in the common bile duct.) He serves at several area hospitals, so he is only at the Goshen Hospital 1 day each week. Seems to be the way some of the smaller cities get quality doctors when the specialty is not commonly needed. He looks Doogie Howser young, so I was tickled to learn that he is older than my oldest kid. He’s very good at what he does.

The Goshen Cancer Center has its own website, http://cancer.goshenhealth.org/main
listing all the cancer doctors there as well as other caregivers in the Cancer Center. They take a holistic approach, with specialists in naturopathic medicine, acupuncture, spiritual help, almost any approach you want to consider.

I have truly been blessed to find such excellent care so close to home. When the pathology report came back after my hysterectomy suggesting ovarian cancer, I was referred to Dr. Gini Fleming at the University of Chicago Medical Center. My oncologist sent all the reports for re-evaluation, and they confirmed that it was NOT ovarian cancer. So I saw a specialist (I can’t remember his name right now) in the adenocarcinoma/cholangiocarcinoma family. I think he expected to see a tired, listless, aging patient but was pleasantly surprised that I had so much energy and good memory/understanding of my health as well as good questions. He suggested I go home and enjoy life! The U of C Hospital is a teaching hospital. I don’t know why, but I was seen there and never ever saw any bill from them. My oncologist, Dr. Westbrook used to work at U of C and was good friends with Dr. Fleming. Whether I benefitted from their friendship or if that is the way the teaching college tries to work or what, I don’t know, but if the cancer returns and clinical testing is warranted, I’ll be back there. They have a deal with some of the area hotels for patients coming from out of town. Because the hospital initiated the reservation, my friend and I stayed in a very nice hotel in downtown, with a great view of the city for only $69 a night. That was about 1 year ago, in August 2008.

Hello Victoria,
You have my sympathy. My dad passed away in Nov. 05. Mom had open heart surgery in Feb. 06 and was surprised when she came out of surgery that she survived with all the pain. In Nov. 06, she was diagnosed with adenocarcinoma but chose not to pursue radiation, active chemo, or surgery. Her oncologist thought she might live a year. She did start a low dose form of chemo by taking pills at home. I don’t know off-hand what they were, but the oncologist was surprised to see her just a few weeks ago. At that time, she was referred to Hospice but was still getting around on her own feet. She had been losing weight and getting tired. She probably was getting weak inside, but that was not visible. Two weeks ago, she fell. She refused to go the the ER because she did not want a series of tests, surgery, or prolonging procedures. The hospice nurse suspected she might last another 2 weeks. She has already outlived that prediction, too. She is ready to go. All eight of her children and all her grandchildren have taken the opportunity to say goodbyes, so now she wonders why she is still with us. We believe in the power of prayer and suspect that is why Mom has lasted so long. Our prayer for her now is that she have a peaceful passing and that her pain be minimized. She has been prescribed morphine as needed, but she doesn’t like to take it. Yes, watching a parent through declining health is difficult, but it also has many blessings. Topics that seemed taboo can now be discussed. Love is more easily expressed, and just spending time together, not even talking, is treasured!

Though your story has some sense of familiarity, it is still heart-wrenching. Please remember that the disease is NOT in control. Things like ATTITUDE, FAITH, PRAYER, and LOVE are also factors that cannot be predicted.

By all means, seek the knowledge you can handle. When I was first diagnosed (cc, May 07), I was reading anything I could find on the disease, but most of it was depressing so I stopped reading. Since finding this site, I’m back to reading and even posting fairly often. The support, caring, questions, and answers here are tangible and usually positive, even when someone needs to vent.

Please visit as you can. Your sister might also enjoy visiting, whether just to read or to ask, learn, vent, whatever. All are welcome. Does your dad use a computer? He might find some of the stories here interesting, too.

We’ll be praying for you all.
God bless you!
Louise