Lump & Bump

I lost another part of me Friday. I decided to have my port removed. It was a difficult decision for a number of reasons. The first being "what if the cancer returns and I would have to have another one reinstalled". The second was odd because the port had become a part of me. I often found myself reaching to touch it just to make sure it and I were still here. We had both gone through a long journey and my port was the link to reaching my cancer (and it eventual destruction). On the other hand, its presence meant that every month I needed to return to the doctor to have it flushed so it would remain clean and clear. That was an inconvenience but oddly enough I will miss my regular visits to the Cancer Center. The center was often as much a source of comfort as it was a place of treatment. I always gained perspective when surrounded by others who were travelling similar journeys. Dr. Dubovsky said "take it out". It is plastic and when not used can only create problems. I know that some people have kept theirs in for as long as ten years. In the end I decided it was time to remove the foreign body from my domestic body. So I went to the St. Joseph's "Lump and Bump" room and my old friend, Dr. Daneker, removed my port of call. It was a procedure that was performed with a local shot and involved a scalpel, an electronic caulderizer (sp?), stitches, and super glue. I also had a patch attached to me that led to a machine that literally grounded me so I would not be electrocuted by the caulderizer. Removing the patch was the most painful part.

I saved the port as a souvenir of my travels. I am hoping it does not become part of a collection. Maybe Cat will include it in one of her pieces. Dr. Daneker said if she does he wants proper credit for assembling the port.


So I am now portless and for the next two years I am on a six month schedule for scans and visits. In April I will celebrate my two year anniversary since my diagnosis and surgery. So in the words of Batman's nemesis "Riddle me this": What sounds like an instrument of torture but in the right hands is a life saving solution? ....................................................... A Whipple! And I had one.

A New Year's Note

I cannot believe it has been almost a year since I last posted. What a year it has been. Cat and I have made up for lost time by travelling all over. From NC to Connecticut to England and Scotland. The New Year was welcomed in during our last visit to the Mountains of Western Carolina. We actually entertained a happy group of 13 while we were there. One of my best New Years ever. My major resolution was to continue living. To get it off to a good start I had my first six month scan yesterday and just got my results an hour ago. The great three letters that I now love NED- No Evidence of Disease. Ned has never been one of my favorite names but it is now.

I also am going to make a concerted effort to get back into The P Train. I like my view from here. Thanks to all who continue to provide friendship, support and love. A hearty, happy and healthy new years to you all.

Back from Land of Landscapes

We got back this week from a great trip in Arizona. We spent the first day with the TGEN Research group in Phoenix. It was a good news sorta no new news scenario. They agreed the latest scan showed no sign of disease. At this time there is no maintenance treatment available for pancreas cancer. If there were to be a recurrence than I am now set up to work with them for treatment. I did learn a little more about what could develop down the road and how to better use my supplemental enzymes. This latter discovery has made a huge difference in my daily gastric experiences. Instead of taking two pills with each meal I now take three, 30 minutes before I eat. It has helped tremendously. The next twelve months is a critical period for the possibility of a new occurrence. After that the stats jump to five years and then beyond. Hopefully I will be able to contact them again in 15-20 years.

The rest of our trip was really a blast. We realized it was the first out of town trip we had taken in a long, long while that was just Cathy and I and no commitments. I forgot how beautiful and varied the landscapes of Arizona are. We went from the galleries of Scottsdale to the desert of Phoenix, to the deserts, cactus and mountains of Tucson, to the Red Rocks and vortexes of Sedona, to the awesomeness of the Grand Canyon and finally to the snow and quaintness of Flagstaff. It sounded like a lot in a short period of time but our pace was casual and we met a bunch of really nice people along the way. Cat took some great pics which I am sure she will soon be sharing, we met an Aztec Elder who passed his healing blessings on to me, decided we might return to Tucson in November for their "Day of the Dead" celebration, were overwhelmed with the wonders of Sedona, and charted a private plane to fly us to and over the depths of the Grand Canyon (still one of my most favorite places to be).

One thing I am working on is to find a good nutritionist who has both an understanding of cancer and the physiology of my surgery. I am open to any recommendations. I know that improving my diet will help my daily comfort and it would be nice to quit eating foods that feed cancer cells and consume those that fight them. Red meat is now maybe a once a quarter treat as opposed to a multiple weekly event. Refined sugars are bad all around. I made a great discovery a few weeks ago: Blue Agave Sweetener. It comes in liquid form, tastes (to me) like sugar and is organic. I think it also will be an adequate recipe substitute as well and hopefully I will not read anything harmful about my discovery.

In the meantime I will get scanned every 4-6 months, keep posting and start taking advantage of each day disease free. As I might have mentioned before I am accustomed to being in treatment for the last year. There definitely were many negative side effects but it also was a time of having people around me that were taking care of me. Time to rediscover normalcy, a daunting task I think.

Off to see another Wizard

We are both excited about our trip today. This is the first trip that Cat and I have taken alone that was either not to the NC mtns or business related in a long while. No major agenda other than the Dr. visit and the Grand Canyon. A casual trip with no plans other than to be with each other. Good form. We have made lodging reservations in Scottsdale, Tucson and Sedona. Sedona is at the end of our stay so we will probably enter a Vortex in Sedona and come out the other side in Asheville and then drive back to Atlanta. If anyone had made that trip please let me know so I can dress for the occasion.

My Dr.'s appt is Monday afternoon. I probably will walk away with a plan but I think it might be a week or so before I have any real medical news. My life has been so medically oriented for the last year that this particular dr visit is almost a return to a norm. I have had somewhat of an abandoned feeling since my treatments ended. As a disease bearer I have been surrounded by caretakers and caregivers for a year and that came to a modified abrupt end. No treatments and according to scans no evident sign of disease. I truly am ecstatic about both but I must admit this has been an adjustment. Entering the possibility of remission is akin to entering retirement. No one really prepares you for the reality. Maybe the vortexes of Sedona are really calling.

In the meantime, I just realized we are flying into a NFL football crazed state. The cardinals play the eagles tomorrow to see which one will go to the Super Bowl. Bet it is kinda crazy.

Well I am off to see the wizard.

P.S. I strongly suggest everyone go buy a copy of "The Diving Bell and The Butterfly". Then whenever you find yourself drowning in self pity you can refer back to this short but incredibly powerful and beautiful story.

Back to the Post

I am not sure why I took the last two months off from posting. Part of it was preparing for and getting caught up in the holidays. Can't really say that I am yet aware of any other reasons.

For those that did not make the annual Thanksgiving festivities it was another successful year. This one was rather special for me mainly because I was able to be there. I think a good time was had by all. This was our 19th annual Thxgvng celebration. Next year will be our 2oth year and it also falls on my 60th birthday. I am stoked. We also enjoyed the rest of the holidays. We celebrated Xmas eve, xmas day and boxing day with a group of friends. We then went to the Mtns of NC for our annual New Years festivities. We had a great time this year and were both really happy when 2009 came along. One because we were worn out and two because I fully expect 2009 to be a better year.

It definitely started off in the right direction. I had a major scan on Jan 8th and the last line of the radiologist's report read "NO EVIDENCE OF METASTATIC OR RECURRENT PANCREATIC NEOPLASM." That was incredible news needless to say. I have to admit I added a few more days of celebration after that.

Cathy and I are leaving Sunday to go to Phoenix (actually Scottsdale). The timing is good because it is cold here and much warmer there. I have an appointment with the TGEN Research Center on Monday. They are a front line research group that conducts research in various types of cancer, diabetes and some neurological disorders. They have one group that does nothing but pancreatic cancer research and are well known for their work. They have had much success at finding recurrences when traditional means have not. It is not that I want to find anything but if the cancer is still there and can be found then I would much rather be proactive with it as opposed to just waiting for it to become visible. I am hoping they will send me home without finding any signs of new growth and a plan in place should something occur in the future. If that is the case I will probably add a few more days of celebratory joy. Cat and I plan on staying out there for another week. We will visit Tucson, Phoenix, Sedona, Grand Canyon and possibly Santa Fe. It is a much needed vacation for both of us. Just she and I and no specific plans. We tend to do well by the seat of our pants.

Congrats to our friend Lenny Kapiloff for his one year anniversary with no sign of disease. He fought a valiant battle with Gist Tumors and had half of his liver removed. Statistically he is in about 5% of those with his condition having made it this far with no sign of recurrence. Way to go, Lenny.

On the other side of the coin, I have had a number of friends this year be diagnosed with the cancer beast. It seems prostate is the most popular form of those I know. My wish for this new year is that we reach new heights of success with cancer research and cures. A $5 donation goes a long way. President-elect Obama proved this during his campaign.

I wish a Happy, Healthy, Safe and Musical Year for all.

F.U. 2 5FU

HELLO! I have learned something over the last six weeks. Feeling poorly does not inspire me to write. Most of the low points are now behind me. Friday was a big day. My chemo/pump that was tethered to me was removed. It was pumping the chemical 5FU into my bloodstream. The title to this post says it all for me. The radiation has been rough but I really think the chemo has been worse. I think I am over the nausea and other stomach turmoil. My hands and feet are beginning to heal and the top layers of skin are starting to peel so they look pretty nasty. Underneath the dead layers are new layers of skin that have feeling so that is good. I have my appetite back but not my sense of taste. I discovered that I can sense tastes and flavors in my brain so I will often get a craving for a particular food. I will make it or pick it up and then upon eating it has no taste and is a rapid disappointment. So I am currently eating bland food and dreaming about good food.

More good news is that this Tuesday is my last day of radiation. After 7 months I have no more planned treatments. I do not know what I will do with myself. Being sick and getting treated is all I have really known and focused on for about a year now. It seems like a long time ago. Cat and I will head to the mountains on Tuesday and then we will have to return on Friday. Saturday is the PanCan walk at Grant Park. All are welcome to join us and we will be in touch with all of you that signed up to walk to make meeting arrangements. Cat and I are making T Shirts for all the walkers. We have raised a little over $3700 and would love to hit $4000. If anyone feels the urge here is the link one more time http://pancan.kintera.org/faf/home/default.asp?ievent=284819.

My plan is to contact the Arizona Cancer Center next week to see if they will do DNA testing on my tumor (the hospital has frozen slides). They are good at locating markers that would indicate specific types of treatment. I also am researching to see if anyone has developed maintenance programs for pancreatic cancer. As is all cancers the "what you cannot see" is what needs to be treated.

After the PanCan walk we will be getting ready for my favorite time of year, Thanksgiving. It is definitely on and plans have been made. We should have a good crowd this year so don't forget to join us. We will serve dinner around 6 - 6:30 and entertain until the wee hours. If you plan on joining us for dinner just bring a vegetable side, a desert or a bottle of wine. We will be serving a smoked turkey and a traditional turkey this year. I will be modeling my Chemical Thursday wardrobe this year. This is a special Thanksgiving for me mainly because I am very grateful and thankful to just be present. I am also looking forward to thanking everyone for being so supportive and encouraging to both me and to Cathy. For those of you that usually show for the Friday night Alfredo's meal there finally is a change this year. We are breaking tradition and will be dining at Amalfi's this year. It is northern Italian in Roswell. Salvatore is the prorietor and Mama is the chef de cuisine. They are all prepared for us. Here is what Zagat's has to say about them. http://www.zagat.com/Verticals/PropertyDetails.aspx?VID=8&R=68317. We will have a private room for our group. I am really pumped.

I look forward to being a bit more regular with my posts and to seeing everyone over the holidays, Thanksgiving, Channukah and Xmas.

The P Train Has Been Hijacked

Alright, ya'll. This is Ashley and I'm hijacking the P Train again. Here's the scoop. I'm all the way over on this side of the country… and my dad's all the way over on that side. He's a tough one to get the truth out of when he's doesn't have to be accountable for body language and such! But from what I hear, he sounds miserable. I mean, sure, he's still got this incredibly up-beat and optimistic attitude. Each day he tells me he's feeling better than he did the previous day. He mumbles shit about only having two weeks left, or how lucky he's been. But in reality, it sounds like what he's going through sucks. AND his fingers get sore. So that's gotta mean that typing is difficult… sooo… rather than forcing him to write to us, let's write to him. :o)

This is an open comment thread. You can write whatever you want in the comment box… Write a message to Paul and his little fan club here. Share something interesting happening in your life. Post a picture of the kids. Write a haiku. Tell a joke. Whatever, it's your thread. Have at it… for Paul's sake!

photo source