tag:blogger.com,1999:blog-389110212024-03-07T16:15:27.861-08:00John CosgroveMay he rest in peace.
March 22, 1958 - July 13, 2010
Gone too soon.Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-38911021.post-55615949168827441262010-12-08T10:19:00.000-08:002010-12-08T10:20:11.292-08:00<div style="text-align: center;"><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>There will come a day</strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>when the tears of sorrow<span class="Apple-converted-space"> </span></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>will softly flow into</strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>tears of remembrance...</strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong></strong><em>and your heart will begin<span class="Apple-converted-space"> </span></em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>to heal itself...and grieving</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>will be interrupted by episodes</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>of joy...and you will hear<span class="Apple-converted-space"> </span></em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>the whisper of hope.</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>There will come a day</strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>when you will welcome the<span class="Apple-converted-space"> </span></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>tears of remembrance...</strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong></strong><em>as a sunshower of the soul...</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>a turning of the tide...</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><em>a promise of peace.</em></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>There will come a day<span class="Apple-converted-space"> </span></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong>when you will...<em></em></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong><em>risk loving...</em></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong><em>go on believing...</em></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong><em>and treasure the<span class="Apple-converted-space"> </span></em></strong></span></span><br /><span class="Apple-style-span" style="border-collapse: separate; color: rgb(0, 0, 0); font-family: Times; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; font-size: medium;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: Arial; font-size: 15px;"><strong><em>tears of remembering.</em></strong></span></span></div>Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-7024975395539992482010-09-05T13:03:00.000-07:002010-09-05T13:56:36.477-07:00The Life and Times of John CosgroveThanks to sister Sarah for making this video possible. In this format, it doesn't translate to big screen very well and for that, I'm sorry. <br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwYyNAzAy9gZYXF_kEFZDuncNGsmsiGK9Nc7BecXnoCPk_-tOP58RQUCzhVLYQz1AmGEterAFcm_to' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br />Hope it brings back good memories of John for youVickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.comtag:blogger.com,1999:blog-38911021.post-67696811036821184612010-07-19T20:11:00.000-07:002010-07-19T21:34:43.004-07:00Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com2tag:blogger.com,1999:blog-38911021.post-4462884673261776502010-07-14T23:42:00.000-07:002010-07-14T23:43:44.390-07:00John Cosgrove, 52, resident and beloved community member of Castro Valley, CA succumbed to Pancreatic Cancer after a 3 1/2 year battle, and died Tuesday morning at his home, surrounded by his family.<br /><br />John was raised in Palatine, Il and was preceded in death by his parents, Tom & Iris Cosgrove.<br /><br />John loved the outdoors and hiking and finding beautiful waterfalls. He loved his family, his work and all the people he worked with and those that he served. After several years in the electricity business, then the candy business with the Knudsen family, he found his place at Knudsen’s Ice Creamery, again, with the Knudsen family.<br /><br />He is survived by his wife of 28 years, Vicki, his son Elliot, his daughter Taryn and her new husband, Eduard Sandulyak. He is also survived by the brothers who took such good care of him, and their families, Kevin and his wife Connie, Mike, Steve and his wife Laura & Pat and his wife Jennifer. He also leaves behind his loving in-laws, David & Kathy Knudsen, Jay & Sarah Knudsen, Tod & Carrie Knudsen and Ty & Monica Knudsen. He is further survived by nieces, nephews and other relatives.<br /><br />Services will be held on Monday, July 19th at First Baptist Church of Castro Valley at 11am, followed by a reception at Knudsen’s Ice Creamery. The family requests that you not wear black. <span style="font-weight: bold;">Wearing purple will be preferred.</span><br /><br />Memorial funds are set up at The Wellness Community in Walnut Creek (<a href="http://www.twc-bayarea.org/eastbay/donate.html" onmousedown="'UntrustedLink.bootstrap($(this)," rel="nofollow" target="_blank"><span>http://www.twc-bayarea.org</span><wbr><span class="word_break"></span>/eastbay/donate.html</a>) and at Pancreatic Cancer Action Network (<a href="http://www.pancan.org/section_donate/donate_now.php" onmousedown="'UntrustedLink.bootstrap($(this)," rel="nofollow" target="_blank"><span>http://www.pancan.org/sect</span><wbr><span class="word_break"></span>ion_donate/donate_now.php</a>) and the family requests all donations go there.<br /><br />If you are interested in joining the fight against Pancreatic Cancer, please join PanCan.org’s mailing list (<a href="http://www.pancan.org/join_mailing_list.php" onmousedown="'UntrustedLink.bootstrap($(this)," rel="nofollow" target="_blank"><span>http://www.pancan.org/join</span><wbr><span class="word_break"></span>_mailing_list.php</a>). Your Congress People and Senators have a huge effect on how much money goes to research and you can play a part in convincing them that this is a worthy appropriation by going to <a href="http://pancan.org/section_get_involved/advocate/congressional_update.php" onmousedown="'UntrustedLink.bootstrap($(this)," rel="nofollow" target="_blank"><span>http://pancan.org/section_</span><wbr><span class="word_break"></span><span>get_involved/advocate/cong</span><wbr><span class="word_break"></span>ressional_update.php</a>.Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com4tag:blogger.com,1999:blog-38911021.post-47391311322433930092009-09-07T17:06:00.000-07:002009-09-08T08:42:59.892-07:00Shouldn't we be accustomed to the roller coaster nature of being diagnosed with cancer by now? It's crazy. The last two and a half months have included the deaths of 4 people in my Survivor's Group, my father's passing after a struggle with Alzheimer's and dementia, and my own CT scan indicating a recurrence of tumor in the operating bed of my pancreas - that is one heck of a Screaming Eagle drop.<br /><br />Clarence and Joyce were a couple of people that helped me find an even keel when I first joined the group. Clarence had that rock solid faith that some have that gives them the strength to face the most miserable circumstances with great peace. He had one lung left when I first met him and it "wasn't much good". Joyce came from a more secular direction in her struggle with her disease, maintaining her gentle and sympathetic attitude no matter how large the fearful lumps at her lymph nodes became. Simone came to the group later with a great zest for living and a clear understanding (and extremely muted) grasp of the short time she had left in her struggle. The last guy only made it to group twice, I think - angry as all get out at the injustice of leaving his beautiful young twin daughters.<br /><br />The last time I saw my Dad he asked who I was at least 6 times over the weekend. We had a great time that I will hold in my heart forever. It was after my diagnosis, which I chose not to share with him, and he still whipped out some great jokes, clever stories, and the fascinating intricately remembered snippets of family history that are often more available to Alzheimer's patients than how to eat chips with dip. Dad passed the first week in July.<br /><br />My CT scan on July 23rd show a wee 75 mm spot on the operating bed of my pancreas. It's about the same place that showed some activity last November. During our meeting (me, Vicki, and my brother Patrick) with Chemo Kaufman, he offered me "months" of life, options of pain management or if I "really wanted", he'd give some more chemo, and he suggested that we contact hospice. Wow. We stopped on the way home and had some (a lot?) great tequila that still remains unidentified by brand.<br /><br />While I initiated wrapping up some of the details and thought about what to do with the apparently short time I had left, I also fired Chemo Kaufman, researched clinical trials that might be appropriate for me, thought about who I wanted for my outside-of-Kaiser second opinion, asked my radiation oncologist Dr. Lampenfeld to re-evaluate my records with a thought to giving me more radiation or maybe the 'Cyber Knife', and hooked up with Dr. Arora (nickname to be determined). Arora came recommended by a number of people in my group and especially Joyce. He was confident that we had a number of treatment options that would be helpful to me and he gave me a fistful of trials that <span style="font-style: italic;">he</span> thought might work for me. He and I acknowledged that pancreatic cancer sucks, big time, but looked far more positively at a future, regardless of the difficulty in getting there.<br /><br />After calling all of the trial people, it turned out that I wasn't qualified for any except possibly a vaccination trial at the University of Chicago. So I made an appointment with the esteemed Dr. Hedy Kindler at the University to coincide with the family's visit to Chicago to remember my father, at the Bomberpalooza. I thought she could give me a second opinion <span style="font-style: italic;">and</span> give the yea or nay on their trials. Following a truly great party with nearly every Thomas Paul Cosgrove relative in attendance, and a couple days of golfing with the brothers at the most idyllic location in Wisconsin, my entourage and I steamed into Hedy Kindler's office for some talk.<br /><br />Dr. Kindler actually referred to my previous diagnosis of palliative pain care and hospice as "nutty". I could have kissed her. She said that I have plenty of treatment options, none of which are currently necessary. She is not completely convinced that my cancer has recurred. The spots on my pancreas and the "slight, so slight", statistically insignificant, increase in my tumor marker increases could be a result of damage done to my guts by the radiation and chemo treatment I took at the end of last year. And while I may theoretically be qualified for the trials she is overseeing, she doesn't think that I am currently sick enough to be enrolled.<br /><br />So now what? I got home from Chicago and Dr. Lampenfeld has scheduled me for a PET scan aimed at figuring out if radiation is an option. I have an appointment with Arora ostensibly to determine with him what my course of treatment is going to be. But Kindler doesn't think I need to start any treatment right away. All of the doctors think that cancer's still a part of my life that sucks, and I need to be mindful of it and listen to what my body tells me. Kindler kindly added the caveat that a headache is usually just a headache - it doesn't very often indicate tumors in your brain.<br /><br />I guess I'll get the PET scan and see what's up. Kindler is anti-radiation, and pled with me to get a second opinion if the first one came back encouraging using the cyber-knife.<br /><br />Until then.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-43959174197600343302009-03-29T15:24:00.000-07:002009-03-29T15:26:47.823-07:003K Walk at Supery Vineyards & Winery<a href="http://tinyurl.com/cyynts" onmousedown="'UntrustedLink.bootstrap($(this)," target="_blank" rel="nofollow">http://tinyurl.com/cyynts</a> to join the team.<br /><br /><a href="http://www.facebook.com/event.php?eid=85404852672">And on Facebook</a><br /><br />The Cosgroves & The Pancreatic Cancer Action Network invite you to the 7th Annual Walk Through the Vineyards on Saturday, June 13, 2009. Join the Napa Valley Affiliate at beautiful St. Supery Vineyards & Winery as we create awareness, raise funds and meet others who share the same goal: to find a cure for pancreatic cancer!<br /><br />Bring all your friends and family for a lovely 3K walk through the vineyards. You can also enjoy a light breakfast, musical entertainment and the always fun wine bottle ring toss contest, and you can even bid to win great prizes in our silent auction.<br /><br />Register online for only $30 for adults and $15 for children before May 28 and you'll be guaranteed an event t-shirt. Event-day registration is $40 for adults and $20 for children, and shirts will be available while supplies last. Pancreatic cancer survivors register for free!<br /><br />For all event details, hotel discounts, fundraising ideas and photos, visit our official site, www.vineyardwalk.com!<br /><br />9:00 am: On-site registration opens. Enjoy a light breakfast and music while you explore the silent auction. <br />10:00 am: Walk begins<br />10:30 am - 11:30 am: Socialize, try your hand at the wine bottle ring toss or bid on auction items <br />11:30 am: Top fundraisers and auction winners announced <br />1:00 pm: Event closes<br /><br /><a href="http://tinyurl.com/cyynts" onmousedown="'UntrustedLink.bootstrap($(this)," target="_blank" rel="nofollow">http://tinyurl.com/cyynts</a> to join the team.<br /><br />If you want to get a room on Friday night: <br />The month of June is high tourist season for the Napa Valley. It is highly recommended that you to book your accommodations early. We have the following hotel group rates for the event good for Friday, June 12 or Saturday, June 13.<br /><br />River Terrace Inn<br />1600 Soscol Ave.<br />Napa, CA 94559<br />Reservations: 866-NAPA-FUN<br />www.riverterraceinn.com<br />Reservations must be made by May 12, 2009<br />Rate: $159<br />Group Name: PAN<br /><br />The Meritage Resort & Spa<br />875 Bordeaux Way<br />Napa, CA 94558<br />Reservations: 866-370-NAPA<br />www.themeritageresort.com<br />Rate: $199<br />Group Name: Walk Through the Vineyards<br /><br />Holiday Inn Express - Just opened March 2009<br />5001 Main Street<br />American Canyon, CA 94503<br />Reservations: 707-552-8100<br />www.holidayinnnapavalley.com<br />Book online using WTV in the “Group Booking Code” field.<br />Reservations must be made by May 12, 2009<br />Rate: $139<br />Group Name: Walk Through the VineyardsVickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-89363688464197750332009-03-21T10:16:00.000-07:002009-03-21T11:13:17.970-07:00Happy BirthdayTwo years ago this week I went to the most excellent Dr. Umair and told her I was on my last belt hole and my pants were still falling down, and my skin clashed with my favorite yellow sweater. I remember she called me on my birthday to tell me there was a definite problem in my abdomen - a small mass (my brother Mike might suggest that a 'small mass' is when Father Rowley had the late service on Superbowl Sunday) in my pancreas. And despite the odds, tomorrow I turn 51.<br /><br />Not only do I get to celebrate another birthday, but I might need to go back to my bigger clothes! I'm getting to the point where I'm almost meaty!<br /><br />I recently spoke to someone that has just been diagnosed with pancreat cancer. It was a vivid reminder of the chaotic emotional whirlwind we went through in Spring of 07. And I really didn't have much to offer - the choices, as written on this blog somewhere, are not all that clear: get the operation if you can, and beyond that go with your gut (no pun intended). I heaped praise on CK Chang, and talked about all the side effects that came from all the different things I've done and that was pretty much it.<br /><br />Except that I'm still around. And that I'm going to be around a while longer. I'm guessing that was the best part of our conversation. I remember how awful the statistics are. And how I felt looking through them and those tough conversations with the family. And it was one of those secret fears I had - there's no one that's making an exception to the statistics so how can I? That was my gift to her. I am living proof that the cancer doesn't always win. As Chemo Kaufman says, pancreat cancer still sucks, but things are pretty good right now.<br /><br />Peace, and Happy Birthday to me.<br /><br />PS. If you're interested in sending a gift, please make it a call, fax, email or letter to your Congressperson to sponsor HR745 which will provide more funding for research and finding a way to cure, prevent and screen for pancreat cancer. All the tools you need to get you started are on the right hand side of this note. On your mark, get set....GO!Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-47315696256531120922009-03-05T17:53:00.000-08:002009-03-05T19:14:33.983-08:00Turn on the HAPPY SWITCH!Chemo Kaufman says Pancreatic Cancer still sucks but.......<br /><br />All indications are that things continue to get better for me. There has been a 28% reduction in the CA19-9 tumor marker and I've gained 10 lbs since the end of the evil 3 week chemo/radiation treatment in November. Kaufman anticipates that the numbers will continue to get better as a result of the ongoing efficacy of the radiation. He says that was just what I needed.<br /><br />I wasn't really convinced that I was going to be joyful following this latest visit, in fact, I was pretty carefree till they drew the blood on Monday, then I got to thinking about the possibilities. It is with GREAT RELIEF and with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">champagne</span> glasses raised that we let you know that we are doing GREAT!<br /><br />I guess I'll have to start doing some crunches, lest I become too bulbous in my middle. I'm always one for putting on a great front, but that's not the kind I want.<br /><br />In the last several weeks, when Supreme Court Justice Ruth <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Bader</span> Ginsberg was diagnosed and treated for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">pancreatic</span> cancer and then that idiot, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">fear mongering</span> shit for brains Senator <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Bunning</span> (R-Kentucky) decided that we needed to start putting pressure on Obama because she only had 9 months to live, I was aghast!!! After surviving this disease for nearly 2 years, it really affected me that someone would think like that. I don't want anyone else to ever get this thing, but when then DO get it, they have to have HOPE! Statistics can drive you crazy. They are not good for pancreatic cancer patients. Jerks that hope for the statistics to be right, for political gain, are the worst kind of opportunist. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Bunning</span> can kiss my ass.<br /><br />We've turned on the Happy Switch! I have 6 weeks until another blood test and CT scan - it's like a cancer vacation. Thanks to everyone for your prayers, kind thoughts words and deeds, and good vibes all around!<br /><br />And thanks to Taryn for all the cupcake trials - at least half of my much needed weight gain.<br /><br />Life - it's a good idea. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ-YztDkUBjliKfOfdb13nv8YF3os4h6pSeR7MEfBpLWUKPjYhD2zP19NZ83ayU2Dd7GH8Z7RPaMYn7QAlT9AjFjnm4MX1g5vfiKU-Umj178CIZkMzZOqnqkvCHa-V4YD4JAuuww/s1600-h/lifeisgood.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 159px; height: 248px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ-YztDkUBjliKfOfdb13nv8YF3os4h6pSeR7MEfBpLWUKPjYhD2zP19NZ83ayU2Dd7GH8Z7RPaMYn7QAlT9AjFjnm4MX1g5vfiKU-Umj178CIZkMzZOqnqkvCHa-V4YD4JAuuww/s320/lifeisgood.jpg" alt="" id="BLOGGER_PHOTO_ID_5309907765052654418" border="0" /></a>Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com2tag:blogger.com,1999:blog-38911021.post-90894657918158788042009-01-17T11:28:00.000-08:002009-01-17T12:02:32.821-08:00It IS a New Year.I had some great news about my friend Karen - 2 years into her cancer following some surgery and lots of radiation, a clean MRI. How fantastic is that a way to kick off the year!<br /><br />My CT scan shows a lot of unremarkable stuff. Which is great. There was some other discussion that had even more syllables per word, but Chemo Kaufman says that they are a 'natural' result of having surgery and chemo and radiation, and not to be too concerned about it.<br /><br />My blood tests are headed in the right direction - not perfect but headed there. More great news.<br /><br />I did try to give Kaufman a hard time about the side affects I've been experiencing. He pretty much told me to get over it - we have abused my body a little in our treatment choices and I just might have to put up with things for a while. Funny thing is that the very next day my guts started feeling better than they have in a month. I had regained a few pounds that I had lost over this last treatment.<br /><br />We've scheduled blood tests in 6 weeks and another scan in 3 months.<br /><br />I'm working on getting more stamina and getting stronger every day. For now, there is no waiting for anything to happen and I just get to LIVE for a little while. This family is looking forward to a few weeks of not thinking too much about cancer and letting life be good. Every day is a blessing.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-50330127831583991422009-01-01T12:03:00.000-08:002009-01-01T13:03:33.939-08:00Happy New Year!Dates like New years have become far more poignant for me in the last 21 months. My birthday, April 13<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> and Easter, Christmas and Thanksgiving carry a special meaning colored by surviving - joyful that I've reached another and pensive about how many are left. <br /><br />This New Year finds my health steadily improving. My weight is stable, I gain strength and endurance everyday, I feel great. There's still a way to go - my guts have not settled down since the conclusion of treatment a month ago and I'm ready for a nap at the drop of a hat. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Mati</span> and I are going out for a walk at the lake later today for the first time in a couple weeks. We are both looking forward to it, and the nap that follows. Between working and the naps in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">preparation</span> for working or to recover from working there doesn't seem to be much left for walking.<br /><br />I have a CT scan and blood tests scheduled for the 5<span class="blsp-spelling-error" id="SPELLING_ERROR_3">th</span> and a visit with Chemo Kaufman on the 12<span class="blsp-spelling-error" id="SPELLING_ERROR_4">th</span>. I'm not nearly as tense about it as I have been for previous tests. I don't know if <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">that's</span> because of my recent therapy, the busy holidays, or that I've found some way to let whatever comes wait for when it actually happens. Don't borrow trouble as the saying goes. Plus I get to browbeat Kaufman a little about these most recent chemo side affects, offering at least a little mental relief.<br /><br />That's all I have other than to wish everyone a healthy and happy 2009!Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-23684731247529930692008-12-04T17:47:00.000-08:002008-12-14T10:26:37.684-08:00December 5th - The lost postI am so done with chemo! Yesterday was the last of the three. And as much as I dislike the chemo, I had to cajole the doctors to go through with it.<br /><br />Thanksgiving evening I left Dave & Kathy's house early - even before dessert. I crawled in to bed with a wee fever. Over the next 12 hours it got as high as 101.5, one degree over the "Call your oncologist immediately or go to the emergency room and be sure to tell them you're on chemo" level. I stayed home instead, and by Saturday morning was back to normal. But my pre-chemo blood test on Tuesday indicated a problem. I was grossly deficient in platelets (good for blood clotting when you're cut) and grievously deficient in white blood cells (good for fighting infection). The chemo charge nurse called and left me a message to not bother coming to my chemo apppointment because it had been canceled and would most likely be eliminated because it was the last one.<br /><br />So I called, confessed my Thanksgiving fever sin, and declared that there must be a way to get it done. I hadn't come this far to not 'take my medicine'. It strikes me as odd that I was so attached to a treatment regimen that I had earlier decried as a little bit random. I suppose that it evolved into the 'right thing' once I started. I ended up with 3 sizeable lectures regarding the fragility of my health and the sheer stupidity of my aversion to the Thanksgiving day emergency room visit. I made all sorts of promises and got my wish to get my last chemo.<br /><br />Dr. Lampenfield, the Obi Wan Kenobi of my radiation visualization, was very cool about the whole thing. He blamed it all on the chemo. Six more radiation sessions and then heal up and hold tight for the CT scan and associated blood tests on Jan 5.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com1tag:blogger.com,1999:blog-38911021.post-40346574603871952352008-11-28T10:09:00.000-08:002008-11-28T11:18:49.616-08:00<object align="middle" height="284" hspace="5" width="350"><br /><embed src="http://www.youtube.com/v/1CndP1fYC0M&hl=en&fs=1" type="application/x-shockwave-flash" allowfullscreen="true" height="284" width="350"></embed></object><br /><br /><br />Hope everyone had a happy Thanksgiving. If you're interested, you can find some pictures of our day <a href="http://picasaweb.google.com/vlcandy/Thanksgiving2008#">here</a>.<br /><br />We've also received a great gift for which we are deeply thankful, from my brother Jay in the form of a <a href="http://picasaweb.google.com/vlcandy/BathroomRemodel#">newly remodeled bathroom</a>. Many people have helped with this and we are especially grateful to Sarah (Jay's wife) for taking the bull by the horns and getting it started, to Jim Fox for giving so generously of his time and most of all to Jay, for giving up gainfully employed days to work on this project and making sure we had a pot to piss in every night while he did it. Also to Rubin across the street for his plumbing expertise and to Pat Cosgrove for his help with everything during his most recent visit.<br /><br />On to the Christmas season....and a whole bunch of healing for John.<br /><br />Peace, love and <a href="http://www.dailykos.com/story/2008/11/26/21425/745/268/666902">hope</a><br />VickiVickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-20255969288896303542008-11-21T12:40:00.000-08:002008-11-22T15:17:43.390-08:00Visualize this!Radiation therapy has turned out to be kind of funny - in an amusing way. I had been thinking about visualization to keep me calm and focused on getting healthy rather than the side affects and potential downside of my treatments. I don't remember who suggested to me that I visualize the treatment as the Allies and the cancer as the Axis soldiers fighting it out. I transformed that a little to let the radiation machinery be the ray guns and my people be the good guys and the cancer cells the bad guys.<br /><br />Then I met my Radiation Therapist. It immediately came to mind that she was Princess Leia, I was Luke, and the tumor was Darth Vader. She's clever and smart and perky and she's manning the guns.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzonH2RUKHfwp33YGJCOzxkjFnNg5AK1F2INzemfhQPsqhP8SX7pd2PErEnQOOy8rPv_hlVwuqTThwSRn63dTC97lwejHFh5AMThYO6_mOyJFmX2vTTw8hV1en_AE53N9hGrjdUA/s1600-h/Leia.jpg"><img style="cursor: pointer; width: 227px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzonH2RUKHfwp33YGJCOzxkjFnNg5AK1F2INzemfhQPsqhP8SX7pd2PErEnQOOy8rPv_hlVwuqTThwSRn63dTC97lwejHFh5AMThYO6_mOyJFmX2vTTw8hV1en_AE53N9hGrjdUA/s320/Leia.jpg" alt="" id="BLOGGER_PHOTO_ID_5271534792041887714" border="0" /></a><br /><br /><div style="text-align: left;">Chemo is not the least bit amusing. It was a very bittersweet return to the infusion room - the nurses that work that room are an amazing group. Ready with kind words, gentle smiles and a little hand holding if you need it or not. I had discussed my return in my survivors Group and one person had mentioned a couple of the nurses by name from her treatment there several years ago, one that had particularly made her treatment more bearable. I also remembered Sherri as especially big hearted, and she remembered me and expressed just the right amount of it-sucks-that-you're-here-but-it's-nice-to-see-you empathy.<br /><br />The visualization for chemo was more about the calm. So I closed my eyes and thought about Feather Falls. It was a long hike to the top of the falls where we were rewarded by a beautiful sylvan sun-dappled glade. The water was painfully cold, just the right thing for my very hot and throbbing feet. The creek ran through the middle with just enough flow to.....carry the cancer out and launch it over the cliff edge to find it's miserable life strewn about the sharp rocks at the bottom of the 640 foot falls, and me continuing to love life from the top of the world.<br /></div></div><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoJgszBNekSxBqDmEU6jf-rOiO6CPFCls5qT1Qf_u-myy2EhNpuurLb0H7hpGXARMBzFlD_QUuMEjEjznHxnQrna76vywW9WrYCnm6uVVl9D9hqkt1w9a_Fb-Vmo1-IAVkHqsi/s1600-h/IMG_0196.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 163px; height: 218px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoJgszBNekSxBqDmEU6jf-rOiO6CPFCls5qT1Qf_u-myy2EhNpuurLb0H7hpGXARMBzFlD_QUuMEjEjznHxnQrna76vywW9WrYCnm6uVVl9D9hqkt1w9a_Fb-Vmo1-IAVkHqsi/s320/IMG_0196.JPG" alt="" id="BLOGGER_PHOTO_ID_5271593464984215442" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhL8Vt1Xp9_xxFd23dS52fP7LFwdgaIh-B5xb4I5MawD6pZbltr3QX387i4ULqHpGRFEwdWL_7A3eFDg6pgRmW57DstG1PZf1-c_eMfdHEVGyIRv8P2KkP4Xd50TboP276D3B-/s1600-h/IMG_0184.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 144px; height: 192px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhL8Vt1Xp9_xxFd23dS52fP7LFwdgaIh-B5xb4I5MawD6pZbltr3QX387i4ULqHpGRFEwdWL_7A3eFDg6pgRmW57DstG1PZf1-c_eMfdHEVGyIRv8P2KkP4Xd50TboP276D3B-/s320/IMG_0184.JPG" alt="" id="BLOGGER_PHOTO_ID_5271595803773571186" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN2Oztx3r3AvVRKL1wn4mRT4wwVuUg8Xpp-b_RsIIODXewFKqGq1jVqdvXbVFNRD7bDEfK9eaCLKKseNLDPlPZt7VoQQ0248sh2TAYm4iBwMWDvEASJdFdy2jEwZqHqF5dXnnk/s1600-h/IMG_0200.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 213px; height: 260px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN2Oztx3r3AvVRKL1wn4mRT4wwVuUg8Xpp-b_RsIIODXewFKqGq1jVqdvXbVFNRD7bDEfK9eaCLKKseNLDPlPZt7VoQQ0248sh2TAYm4iBwMWDvEASJdFdy2jEwZqHqF5dXnnk/s320/IMG_0200.JPG" alt="" id="BLOGGER_PHOTO_ID_5271594068055688114" border="0" /></a></div>Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-10085607242900084812008-11-10T17:39:00.000-08:002008-11-10T21:17:01.765-08:00Cast in stoneI've talked at length with Chemo Kaufman and any number of his minions. I had a couple of questions regarding the proposed change to the radiation therapy regimen which Lampenfield has answered to my satisfaction (although I'd be so much more satisfied with not having to <span style="font-style: italic;">know</span> Lampenfield or any of his peers). So the action starts the 19th.<br /><br />I'll be receiving a full dose of gemcitabine at 12:30 PM up in Walnut Creek. Radiation is applied either before or after that (but on the 19th). Then radiation continues over the next 4 business days, and on the next Wednesday, we'll start over again (big chemo and some radiation on one day followed by 4 days of radiation only), for 3 weeks. Then I'll be free to go about my business. This is a relatively progressive regimen that made sense to Kaufman, he convinced Lampenfield, and they convinced me. The rub is that it's more Gemcitabine than they have historically given with radiation. And it's a higher dose rate of radiation than they normally give on a daily basis. But it's "biologically equivalent" to the dose rate that Dr. Lampenfield and I had originally discussed. If I never use "biologically equivalent" in a sentence again it will be too soon.<br /><br />I feel great. I've gained some weight. There's a tiny place in my brain that is telling me it's all an awkward mistake and very shortly I'll have a phone call or a letter saying "Oops, you can just chill, we made a mistake". OK, so probably not.<br /><br />I am at peace with the plan. I'm ecstatic that once again the cancer was detected early in it's ugly arc of existence and the doctors feel there's a chance of eliminating it. And I'm achingly thankful for all the loving support I have. <br /><br />Now let's kick the bastard's ass.<br /><br />JohnJohnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-26315633830954877892008-11-06T11:52:00.000-08:002008-11-09T11:22:40.417-08:00New TattoosI went to have my Planning CT scan taken yesterday. But when the picture is all done and they verify that I didn't move during the operation, she needed to tattoo little aiming marks on my abdomen and sides. So she says "now, this is going to hurt", and I think to myself, in that smug kind of tone, well how much can it hurt compared to when I got my belly slit open. Thankfully, I decided not to say it out loud because she was not joking. I think she used a knitting needle to get the ink in. Once they do all the calculating and stuff that they do, they use those marks for lining me up on the table. She suggested that I could get a really cool tattoo to cover up the dots as soon as they were done.<br /><br />The chemo part is another issue. If we decide on using the 5FU, I have to get a port surgically implanted so that I can have some everyday without going to the hospital. Who knew. One of the other choices is a self administered pills, so then you have to muster up the courage to poison yourself everyday. And the last one I'm considering is my old friend Gemcitabine, administered at the infusion room with all the associated needles. Hmmmmm.<br /><br />The date for radiation is most likely set. On November 18th I go and we have a trial run on the table and they point at the tattoos and make sure that they're doing it right. If all goes as planned radiation starts on Wednesday the 19th. So the chemo has to start on the 19th - any port has to be in by that time, or whatever.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-1923343082685781622008-11-02T10:05:00.000-08:002008-11-02T10:58:17.513-08:00Pancreat Cancer Awareness MonthNovember is <a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G">Pancreat Cancer</a> awareness Month. I don't really need it much to help me stay aware of it.<br /><br />I was diagnosed on May 13, 2007. That year, 37,000 other people got the same bad news. And here's the thing - 36,000 of them died. I have had it so good for so long. For most people that get diagnosed, the cancer has been growing for some long while with no symptoms, growing in an area of the pancreas that doesn't cause any issues that they notice. Mine fortunately made me very ill right away - I remember Kathy nominating me for the show "What not to Wear" because of the yellow sweater I wore to Easter dinner clashing with my skin color. But these others get diagnosed with a huge tumor that involves some major arteries and is inoperable. For many, despite the 'state of the art' treatment, it means they last no more than 2 to 6 months.<br /><br />And there's the rub. Pancreat Cancer remains one of the leading causes of cancer related deaths, and yet recieves relatively little research dollars. It has been receiving a little more press lately - Randy Pausch was a great spokesman, Patrick Swayze is on a newly experimental drug and doing remarkably well, and Luciano Pavarotti went through a number of operations and treatment options before losing his battle.<br /><br />Meanwhile, I spoke with Chemo Kaufman on Friday night at about 10 PM (Trick or treat?) and told him that I wanted to start radiation therapy and concurrent chemo therapy as soon as possible. We discussed three possible chemo routines. He's researching over the weekend and I've specified an aggressive progressive regime. So we'll see what he comes up with and decide on Monday. I emailed the radiation oncologist, Dr Lampenfield, and asked him to get me in for the aiming CT scan as soon as possible and we'll speak on Monday about that appointment.<br /><br />I wonder how many people were diagnosed this last week and didn't get to sweat over these choices. Or how many others are sitting at home without any hope because they're under insured or maybe have no insurance -I'm pretty well insured and this time around the battle will cost another $4000 and some amount of upset to work for both Vicki and I.<br /><br />And I thank with all my heart all those researchers working everyday to improve the chances of folks like me. I talked to Meg and Jeanine, two clinical trial RN contacts, this week while looking for trials and I couldn't have wished for more genuinely gentle and empathic people. And I sing the praises (a metaphor - no singing for real) of all those people that run marathons, walk relays, have bakesales or whatever to raise money for cancer research, no matter what kind it is.<br /><br />Thanks for checking, I'll keep you posted.<br /><br /><span style="font-style: italic; font-family: trebuchet ms;font-size:100%;" ><strong>Ask Congress to get ready for our 2009 pancreat cancer legislation and prepare to co-sponsor this bill in the new Congress!</strong></span> <ol style="font-family: trebuchet ms; font-style: italic;"><li><span style="font-size:100%;"><a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>ACTION ALERT!</strong></a> <strong>Ask your U.S. Representative to co-sponsor the <em>National Plan to Advance Pancreatic Cancer Research Act</em></strong> in 2009! Let’s get started early by educating Congress about this potentially life-saving legislation and getting them fired up about it now! <a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>Click here to Take Action!</strong></a></span> </li></ol> <p style="font-family: trebuchet ms; font-style: italic;" align="center"> <span style="font-size:100%;"><strong><em>Be sure to use the Tell a Friend feature on any of the Action Alerts above to ask your friends and family to join you in turning our message into a pancreatic cancer advocacy movement!</em></strong></span> </p>Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com5tag:blogger.com,1999:blog-38911021.post-22508074242475298652008-10-31T18:21:00.000-07:002008-11-01T12:14:59.700-07:00Cancer is so tryingOne sleepless night did it to me. I spent the rest of the week in turmoil questioning my decisions and decrying the injustice of it all. But it turns out I was right all along. Radiation with concurrent chemo is the only way to go.<br /><br />I must have looked at nearly 400 brief descriptions of clinical trials that came up when I searched with pancreat cancer (I use 'pancreat' instead of pancreatic to show disrespect, like when people refer to the Democrat Party). I winnowed it down to 7 that looked like they might work for me. And then I started calling them. I am apparently not sick enough for a trial. One interviewer was sorry that I didn't have metastatic lesions on my liver. How odd. Another trial required a needle biopsy - but since my recurrent tumor is so small and inoperable, we agreed that it was unlikely someone would be able to thread a needle in there without killing me.<br /><br />One of the studies convinced me that it might really have something new and promising; a gene splitting, stem cell from your own body kind of thing that they ferment and then reinject. But the exclusion rules included previous treatment with Gemcitabine. I am arguing with them a little since my Gemcitabine treatment ended 50 weeks ago, but scientist have their own standards - she did not believe me when I explained how special I really am.<br /><br />All in all it was just way too many choices of treatment for way too little potential improvement. Kaufman and I will decide which chemo to use, and then start therapy as soon as possible.<br /><br />I'll keep you posted.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com9tag:blogger.com,1999:blog-38911021.post-23945361908839355842008-10-27T20:53:00.000-07:002008-10-27T21:41:01.336-07:00Still undecided?I got a new Doctor today - I now have a Radiation Oncologist, the delightful Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Lampenfield</span>. He wanted to consult with me about radiation, but I think he mostly convinced me that I could make my decision regarding treatment now - why wait another month when nothing is really going to change for the better before that?<br /><br />And one of the first things out of his mouth is that the his goal of radiation treatment for me is curative. So radiation is in. You get <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">tattoos</span> and everything. He pretty much relieved or minimized almost all of my fears. There is risk of some number of long term side affects, but they work real hard to stay below the level of exposure that raises that risk. And lots of people get by with only one good kidney anyway. What a commitment - 45 minutes a day for 6 weeks? Yikes.<br /><br />The only question is whether to have chemo concurrently. And why not - in for a penny in for a pound. Running chemo at the same time increases the toxicity of each, but isn't that kind of the goal? And those effects should still fade away once the treatment is done. <br /><br />Now, I had <span class="blsp-spelling-error" id="SPELLING_ERROR_2">gemcitabine</span> after my <span class="blsp-spelling-error" id="SPELLING_ERROR_3">whipple</span>. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Tempero</span> feels that <span class="blsp-spelling-error" id="SPELLING_ERROR_5">gemcitabine</span> works for me. But most of the available information about use of chemo with radiation is about a chemo called 5<span class="blsp-spelling-error" id="SPELLING_ERROR_6">FU</span>. Radiation Dr. says I should discuss it with Chemo Kaufman, but I'm pretty sure Kaufman will leave it up to me anyway. So which do I choose? There's a day or two of research to do about which way to go, although sometimes it feels like a coin toss would be just as good.<br /><br />And I want to spend a little more energy looking into the availability of clinical trials. But I've got a couple weeks I guess. If I call <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Lampenfield</span> tomorrow to go with the radiation, it's still 2 weeks before the first shot gets taken. Plenty of time for everything.<br /><br />Here's to moving forward.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com2tag:blogger.com,1999:blog-38911021.post-17120136469179406902008-10-18T11:21:00.000-07:002008-10-18T16:09:46.704-07:00DecisionsSo I don't have to worry about the intussecption anymore. That's good news.<br /><br />I went to see the famous and fabulous Dr. Tempero at UCSF for a second (or third?) opinion about the PET scan and what I should do about it. Dr. Tempero is confident that my cancer has come back. It doesn't suck much worse than that.<br /><br />She doesn't feel that surgery is a good idea, even if it's possible (which Chang says it is not). Nor is radiation. Her take is that we should consider Gemcitabine, the adjuvant chemo drug I took after my whipple procedure, which in my case, seems to have proven track record having kept the cancer at bay for the last year. Her experience says that if people get a recurrence or metastasis following a whipple, it will normally happen very quickly following the surgery. And in my case it has been over a year since the surgery, most likely due to the Gemcitabine. So treatment moving forward should include it. The surgery is not so good because it is focused on a small targeted area and that's not how my cancer works. Radiation works similarly but additionally might damage stuff and cause future problems while not necessarily giving much benefit.<br /><br />She, like Kaufman, recognizes that while I probably feel an incredible urgency to do something about this thing growing inside of me as soon as possible, it is ok to wait a while and use the next scan to finalize my decision about treatment. And there's the rub.<br /><br />Kaufman took my case to the tumor board at Kaiser on Friday morning. A bunch of different specialists sit around and look at pictures of my guts. He called last night to let me know that the board had convinced him that my cancer has returned, reinforcing how badly that sucks. His group recommends radiation therapy. This would not be the very focused cyberknife, but the generally less targeted radiation. They are conflicted about whether to recommend concurrent chemo or not - it makes everything more toxic, apparently. So I am going to see the radiation oncologist in the next little bit for a consultation.<br /><br />So I don't know what to do and I don't know how to make the decision. I'm not as shocked by all the tumult this time around - I always knew that it was possible that it would come back, unlike the first time around when I thought cancer could never affect me or mine. I, like everyone else on the planet, want the best chance at the best quality life for as long as possible. But where is the balance and the tipping point in the choices of treatment? I feel like I have 6 weeks to make a decision and execute it. That's my timeline and I'm sticking to it - December 1st.Johnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com2tag:blogger.com,1999:blog-38911021.post-73492394336049222342008-10-16T20:05:00.000-07:002008-10-16T20:10:35.227-07:00Encourage Congress to approve spending for Pancreatic Cancer Research<p style="font-weight: bold;" class="tableHeading1"><span style="font-size:180%;">Take Action Now!</span></p> <strong>We need you to RAISE YOUR VOICE a little louder!<br /><br />It’s time to show our appreciation for the hard work of Representatives Eshoo & Brown-Waite! While we’re at it, let’s ask Congress to get ready for our 2009 pancreatic cancer legislation and prepare to co-sponsor this bill in the new Congress!</strong> <ol><li><a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>SIGN THIS ONLINE PETITION!</strong></a> Show your support for our historic legislation, the <em>National Plan to Advance Pancreatic Cancer Research Act of 2008</em> (HR 7045), and thank Reps. Anna Eshoo (D-CA) and Ginny Brown-Waite (R-FL) for introducing it! Our goal is to get as many people across the country to sign this. <a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>Click here to sign today!</strong></a><br /><br /></li><li><a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>NEW ACTION ALERT!</strong></a> <strong>Ask your U.S. Representative to co-sponsor the <em>National Plan to Advance Pancreatic Cancer Research Act</em></strong> in 2009! Let’s get started early by educating Congress about this potentially life-saving legislation and getting them fired up about it now! <a href="http://www.kintera.org/AutoGen/Contact/ContactUs.asp?ievent=289758&en=epLDJMPuGgKILLOsEeJHISMGKhKNI3OELhJQJ4MAIdLOLWOxGhJRJXMvGhL1G" target="_blank"><strong>Click here to Take Action!</strong></a> </li></ol> <p align="center"> <strong><em>Be sure to use the Tell a Friend feature on any of the Action Alerts above to ask your friends and family to join you in turning our message into a pancreatic cancer advocacy movement!</em></strong> </p>Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-77369540705081081682008-10-07T18:10:00.000-07:002008-10-09T23:00:58.026-07:00ScanningOn September 4<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> I had a sort-of-quarterly CT Scan and Chemo Kaufman told me there was something <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">wrong</span> with it. I had something called an <a href="http://www.mayoclinic.com/health/intussusception/DS00798"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">intussusception</span></a> and that had to be taken care of as soon as possible. So he spoke with my most excellent hero Dr. CK Chang, the author of my <span class="blsp-spelling-error" id="SPELLING_ERROR_3">whipple</span>. Chang wanted a PET scan so I went to get one. This is where things get confusing - a PET scan automatically comes with a CT scan so people can see where any PET scan "bright" spots (generally not good) are really located. Well, I have a bright spot. To some, this indicates a recurrence of cancer. To others, like the good Dr. Kaufman, it could be caused by something happening near the scar tissue and re-plumbing liberties that came with my <span class="blsp-spelling-error" id="SPELLING_ERROR_4">whipple</span>. But there is no longer any indication of an <span class="blsp-spelling-error" id="SPELLING_ERROR_5">intussusception</span>.<br /><br /> Now Kaufman says I don't need to worry so much - when someone has a recurrence of pancreatic cancer it shows up as bright spots everywhere, you feel really bad, and as Kaufman says, "the end is nigh", and that's not the way this looks. But then I go see Chang and he's very sorry, he 'doesn't like to operate' in these cases, and he recommends some radiation and some chemo. Right now.<br /><br /> That was about 10 days ago. I started requesting copies of my records so that I could go get another opinion. I cracked down on my diet so that I could eliminate the confusion that <span class="blsp-spelling-error" id="SPELLING_ERROR_6">pancreatitus</span> wreaks on blood tests. I stopped sleeping and buying green bananas.<br /><br /> I took an enzyme test yesterday, the proof against <span class="blsp-spelling-error" id="SPELLING_ERROR_7">pancreatitus</span> interference - the results came back all good this morning so I went and gave more blood for the tumor marker tests this morning. Those results should be back sometime Thursday, probably when my brother Steve and I and my friend Jim are making the turn at <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Wente</span> Vineyards golf course.<br /><br /> I wish it was just an <span class="blsp-spelling-error" id="SPELLING_ERROR_5">intussusception</span>. I've never been real keen on making detailed plans that MUST be adhered to, but I'd give my left arm for a plan right now - good, bad, or whatever. I have things to see, people to meet, and children to help move out. I feel great physically. Most of the time I feel good emotionally, too. But let's have a plan.<br /><br />Thanks for checking -<br /><br />JohnJohnhttp://www.blogger.com/profile/09115516200282807630noreply@blogger.com0tag:blogger.com,1999:blog-38911021.post-26639926969398523352008-07-31T18:25:00.001-07:002008-07-31T18:33:39.594-07:00We RememberToday I received this as an email that asked that I forward it on to everyone. I'm not huge on burgeoning people's emails with chain mails, so I thought I would put it here because it is a great sentiment.<br /><br /><p style="text-align: center;" align="center"><span style="color: rgb(1, 1, 1);font-family:Times New Roman;font-size:180%;" ><span style="color: rgb(1, 1, 1);font-size:18;" >WE REMEMBER</span></span></p><p style="text-align: center;" align="center"><span style="color: rgb(1, 1, 1);font-family:Times New Roman;font-size:130%;" ><span style="color: rgb(1, 1, 1);">All you are asked to do is keep this circulating.<span> </span><br />Even if it's to one more person.</span></span><span style="font-size:130%;"><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;" ><span style="color: rgb(1, 1, 1);"> </span></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);"><br /><span> </span><br /></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);">In memory of anyone you know that has been struck by cancer.<span> </span></span></span><span style=";font-family:Calligraph421 BT;font-size:180%;color:blue;" ><span style=";font-size:18;color:blue;" ><br /><br /></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;" ><span style="color: rgb(1, 1, 1);"><img style="width: 339px; height: 138px;" alt="cid:image004.jpg@01C8E8AA.C01F9A00" src="http://mail.google.com/mail/?ui=2&ik=e132eb9146&attid=0.1.1&disp=emb&view=att&th=11b7b7b7500a5fea" /><br /></span></span><span style=";font-family:Calligraph421 BT;font-size:180%;color:blue;" ><span style=";font-size:18;color:blue;" ></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:180%;" ><span style="color: rgb(1, 1, 1);font-size:18;" ><br /><span style="font-size:130%;">A Candle Loses Nothing by Lighting Another Candle.</span><span style="font-size:130%;"> </span></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);"><br /></span></span><span style=";font-family:Calligraph421 BT;font-size:130%;color:blue;" ><span style="color:blue;"> </span></span><span style="font-size:130%;"><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;" ><span style="color: rgb(1, 1, 1);"> </span></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);"><br /></span></span><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);">Please Keep These Candles Going!</span></span><span style=";font-family:Calligraph421 BT;color:blue;" ><span style="color:blue;"></span></span></p><div style="text-align: center;"><span style="color: rgb(1, 1, 1);font-family:Times New Roman;font-size:100%;" ><span style="color: rgb(1, 1, 1);font-size:12;" ><img style="width: 347px; height: 256px;" alt="cid:image005.gif@01C8E8AA.C01F9A00" src="http://mail.google.com/mail/?ui=2&ik=e132eb9146&attid=0.1.2&disp=emb&view=att&th=11b7b7b7500a5fea" /></span></span><span style=";font-family:Calligraph421 BT;font-size:180%;color:blue;" ><span style=";font-size:18;color:blue;" ></span></span><br /><span style=";font-family:Calligraph421 BT;font-size:180%;color:blue;" ><span style=";font-size:18;color:blue;" ></span></span></div><div style="text-align: center;"><span style="color: rgb(1, 1, 1);font-family:Calligraph421 BT;font-size:130%;" ><span style="color: rgb(1, 1, 1);">This one, I do ask that you send on.</span></span><span style="color:blue;"><span style="color:blue;"></span></span></div><br /><p style="text-align: left;">We hope that all who are still tuned in are doing well. We are still getting on with life, which is good. There are many challenges, but nothing we can't handle as long as we have our health. </p><p style="text-align: left;">In 2007, we were anxious for it to be 2008. Now that we're here, it's good, but we are now looking forward to 1-20-09 and the blessed end to a completely different kind of nightmare.<br /></p>Be well and continue to work for peace.Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com1tag:blogger.com,1999:blog-38911021.post-50847579442638786852008-04-28T19:30:00.001-07:002008-04-28T19:40:16.914-07:00Celebrating survival - One year inI don't know if anyone is still listening or checking in. I couldn't blame you if you didn't because we don't keep up. After looking down the abyss of life and death, we've been trying to concentrate on life and living and it's been a good thing. <br /><br />John is back to work. Taryn is back to school (and still working a ton), Vicki got a job working as Executive Assistant for the President of the Boys & Girls Clubs of Oakland, Elliot got his braces off and one step at a time, life is going back to some kind of normal. We think daily about how very lucky we are and very often, my last thought before I go to sleep is "life is good". <br /><br />John has had 2 scans since the end of chemo and the last one, 2 weeks ago, showed that he has a case of pancreatitis, but it also shows that he has no cancer. What a blessing! We can deal with pancreatitis, we can deal with the nutritional problems of having a partial pancreas and yes, we could probably deal with more cancer, but it sure feels good not to have to. <br /><br />In honor of cancer surivors and victims everywhere, alot of people do alot of walking and we have a good friend who is training for a marathon Walk for A Cure. John (and his brothers) are big on the haikus and he has written a couple lately so I wanted to post them for you all. They made me cry and I'm pretty sure they will touch others hearts as well. <br /><br /><span style="font-weight: bold;">Marathon for the Cure </span><br /><br />Searching for a cure.<br />Survivors, victims and us.<br />It's been a good run.<br /><br /><span style="font-weight: bold;">Anniversary</span><br /><br />Today, one year past,<br />Chang gave me a second chance.<br />And my brothers came.<br /><br />Continued love and gratitude<br />VickiVickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com1tag:blogger.com,1999:blog-38911021.post-65177963945965705012007-12-06T07:50:00.000-08:002007-12-06T17:28:51.093-08:00Transition #1Like <a href="http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660611/k.BCED/Home.htm">Lance Armstrong</a>, I believe it's time we get insistent on finding out the causes of cancer and getting those causes under control. I know this is a big problem for those that think that corporations should have all the rights of a person, but it's more and more clear as time goes by that corporations have no humanity, no soul and they are extremely short sighted in their quest for profit only. I mean, afterall, if what they (say, tobacco companies) do kill off their customers in the long run, then how do they sustain themselves? I guess they just go after our kids so they can kill off the next generation too eh?<br /><br />Why don't they care? Well, corporations have no hearts and no capacity for caring. As the fragile humans that we are, we should want them somehow kept in check. How that happens, in this day and age is beyond me, but the fact that countless corporations are ALLOWED to go out and poison the world is incomprehensible to me. Why does it have to be proven that what they do causes harm? Why shouldn't it be that THEY HAVE TO PROVE that what they do causes NO harm BEFORE they are allowed to do it (whatever "it" is)? Capitialism at it's finest! Bah!<br /><div style="text-align: left;"><br />Too many people have cancer. WAY more people die of cancer in this country every single year, than all the people that have died in the 9/11 attacks and all the immoral killing that has gone on since. Why are we not waging war on cancer rather than on brown people? What happened to the <u>good</u> of the government that I remember growing up with as a child, where monopolies were illegal and spying on citizens was cause for impeachment? What happened to leaders that united our country around sacrifice and true love of country and those that defended it? Why CAN'T we all agree that getting rid of cancer and providing health care for all people would be so much more productive than spending all our resources on bombs and guns? Something in my soul tells me that something is terribly wrong with this and that if we don't do something about it, the planet will finally spit us all out so that she can survive. That's not what I want for my kids and all their kids to come. Maybe cancer will just have to knock at every door to get people to wake up, but will it be too late then?<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.amazon.com/Secret-History-War-Cancer/dp/0465015662"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 169px; height: 262px;" src="http://www.alternet.org/images/managed/storyimage_thumb_cancer.jpg" alt="" border="0" /></a><span style="font-weight: bold;"><a href="http://www.alternet.org/healthwellness/69775/?page=entire">The Health Industry's Secret History of Delaying the Fight Against Cancer</a><br /><br /></span><blockquote>In her new book, Devra Davis exposes scientists and government officials who have worked to downplay or dismiss preventable causes of cancer.<br /><br />Davis is also arguing that we need to dislodge the belief in the existence of incontrovertible scientific proof from the public and legal mind as well; after all, most scientists would be the last to say their conclusions represented some forever-undeniable truth. "If we insist on having at hand absolute proof that harm has happened before we move to prevent or control damage," Davis writes, "we are dooming future generations." But the time is right, she says, for a paradigm shift in how we think about cancer; and she argues that we are beginning to make major breakthroughs -- in part due to the help of industry insiders -- that can help bring about this fundamental change.</blockquote>Let's just hope so huh?<br /><br />In the meantime, I've decided not to give those tobacco companies any more of the little money I have. On December 1st, I quit smoking after almost 40 years. I've been pretty much a closet smoker for quite a while and I'd cut so far back, that quitting is the only logical next step. They say that no matter when you quit, you start getting healthier in the first few days. I'm not sure about that yet, but I'm open to feeling it when I get over "jonesing" for my next American Spirit Light Menthol cigarette.<br /><br />Anyway, <a href="http://books.google.com/books?id=5UZJFNB1qC4C&printsec=frontcover&dq=inauthor:Devra+inauthor:Lee+inauthor:Davis&ei=2RxYR6a1N4jgswPck-GvDw&sig=bmmP5Fy2mlEuA5dGH6trM_lpbW0#PPP1,M1">we have the scientific tools to reveal the connection between the environment and disease in a way never before possible.</a><br /><br />We will probably have to wait till there is new leadership in this country, but we can start now, figuring out ways to demand that we are protected from pollution and that we join the rest of the world in figuring out how we can all prevent the looming climate crisis.<br /><br />Oh, and can we just stop with all the wars?<br /></div>Vickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com3tag:blogger.com,1999:blog-38911021.post-50990313035334118132007-11-26T11:36:00.000-08:002007-11-26T11:49:32.446-08:00So much to be thankful forWE MADE IT! John's chemo is over. Tomorrow it will have been 2 weeks since his last infusion and the way he feels seems right on schedule with the way he's felt for the last 6 months. With the nadir (low point) for Gemzar being 10-14 days after infusion, I think we can now count on him beginning to get back to his normal self. Since the surgery, he's gained about 25 lbs and he still has that much more to go, but without that constant poisoning going into is bloodstream, it should go alot quicker now. (Mmmm....baby back ribs!!!)<br /><br />No more needle pokes every week. No more flu like symptoms 24/7. No more achy joints for him. No more nausea medication. No more burning veins from that nasty chemical they put in him every week. NO MORE!! <br /><br />Soon 2007 will be over. Before that happens (December 15), John will get a scan of his body to check to make sure he's still clear of cancer. Once we get the word, we are going to really look forward to the new year, a new beginning and a new outlook on life. It's been a tough year, on so many levels and while I'm not one that usually celebrates the passage of time, I'm going to take personal privilege in getting a great deal of pleasure seeing the end of this year. <br /><br />I hope anyone that's still reading this has had a great Thanksgiving. We sure did, and the best gift I can think of for Christmas is the gift of John's health. <br /><br />I can't close without once again taking the chance to thank everyone who helped us get through this episode in our lives. You all know who you are and I love you!<br /><br />Peace<br />VickiVickihttp://www.blogger.com/profile/05998401111011881558noreply@blogger.com5