One more night in the clouds

We, especially Cathy, have spent the better part of the last couple of days outside gardening. I mostly have been watching while Cathy does the hard stuff. We actually had a lot of cleanup work from the storms that have been blowing through over the last few months. The property really cleans up well and the view with a cool breeze blowing is really very settling. The tree and pond frogs are very active in the early evening and into the night. Some are very high pitched chirping while the larger frogs sound like a bunch of old men mumbling to each other. We drove to the top of our mountain before dinner where there is a huge series of meadows with walking trails. All of the meadows are planted with hundreds of different types of wildflowers. They are just now starting to bloom. By mid summer the colors are incredible and when you walk by them the fields are literally buzzing with honey bees. I hope we do not have a decrease in our bee population. It's all very intoxicating.
We have to leave tomorrow but decided we are going to make sure we get up here as often as we can during "the chemo period". I really am ready to get this process started. I am not very good with the anticipation part. Anyway, here is to one more night in the clouds.

No longer in my mind

We are actually here in the mountains. We arrived just before the sun set so we could actually see what feels so good. It has been a busy week with doctors, family, friends, concerts and such. Cannot understand why we feel so exhausted. James Taylor at Chastain was great. He has such a versatile, strong voice and it does not seem like the years effect his range at all. When he played "In my mind I'm going to Carolina" I just closed my eyes and wished and ......poof here we are. I think after I get my port installed on Monday I am going to go to the oncologist and get them to run a hose from their office to our home here. Getting toxified on the deck overlooking the lake and mountains sounds a lot more appealing. It is very strange to think I am going to have another hole put in me so they can pour chemicals in. I am beginning to feel like the teapot that couldn't.

The actual chemo will start on Thursday morning and will be once a week for either 6 or 9 weeks depending on blood test results and scans. We are hoping to be able to make a few more escapes up here in between the treatments.

Question: What takes 30 minutes to do but needs all day to start and finish.
Answer: A port installation at St Joes. The install(like a computer program) is scheduled for 12:30 but we need to arrive at 9:00 and I will probably wake up around 2 and leave between 2:30 and 3. I should not complain because the alternative would be to have an IV line each time I go for chemo. My poor, already petrified veins are very greatful for the port. I will be a private docking station for passing ships. I think I will call it Port RSB for right shoulder blade because that is where Dr. Daneker is going to install it. I ask him why there and he said because he is left handed and it is an easier access for him. I liked that.

I hope you have as nice of a weekend as I will. If any of you would like to speak to us feel free to wait until Monday evening (jus kiddin). And to all a good night.

Let the games begin!

We have a target date to begin the "Toxification of Paul" . Thursday, June 5 is the start date. Before then I have to go and have a short out patient procedure where they install a port in my upper chest. This is where my chemo IV's will be hooked up. Plus they can give me fluids and take blood samples as well. The chemo, for you techies, for the first round will be a combination of gemzar and cisplatin. They are administered once a week in three week cycles and I will do 2 or 3 of those cylcles. After that I take a couple of week break and then move on to radiation with chemo and particularly FU-5. That will be about a four week process. We had a great teaching session with our oncologists nurse. The only bad part was she was obligated to review all the possible side effects. Kind of like the do on the pill commercials on tv. It was Cat, Ash and I in the office and when she got thru the list of about 25-30 possibilities we were all like deer caught in headlights. There was virtually no part of my body that was not going to have something. Then I stop, take a breath and remember that millions of people go thru chemo. Everyone only has a few of these issues. She is doing what she should by making me aware of the possibilities.

So now here we are on Memorial day week. Going out to dinner tonite with friends and family and tomorrow nite is a table at Chastain and an intimate evening with James Taylor. Monday nite dinner with more family. Hope you all have a good, grilling Memorial Day weekend.

Update

Went to the oncologist today and will go back on Friday for a teaching session about my treatments. They will begin either late next week or the following week but no later. I will do one round of staight chemo once a week for four weeks. That will be followed by a break and then I will do chemo/radiation once a week for four weeks. Then they throw my ass to the dogs cuz I will be worn out. After that they will scan me and decide what if anything is next. The good news is that the Dr. does not want my feeding tube to stay in or my PICC. Those will come out tomorrow or Friday. Then a port will be installed for my chemo and if I need any outside feeding. I don't know why I think that the surgery was easier than the treatments but I am certainly getting ready to find out.

Swimming and Breathing

I find myself sort of free floating between highs and lows and this is not a normal experience for me. I keep trying to step back and find the logic and then fix it. That is not working. I realize that about 6-7 weeks ago I was standing on the edge of a swimming pool and someone came up to me and said "here hold this while I tell you something". They put an anvil in my arms and pushed me in the pool while telling me about the new lifestyle that was growing inside of me. I think I am slowing learning that I need to figure out how to breathe all over again. In the interim I am taking in new bits of information all the time and trying to categorize them between 1) good info; hang on to it 2)not so good; but I need to keep it handy for a while and 3) this is really depressing; file it, lock it up but store the key in a safe place. I am sure my filing system will get more sophisticated as I learn more.

I also am looking much harder for the good news, the silver linings and "ummmm that was good". Got one today. My recent (yesterday) blood work came back with everything in the normal categories so that means today is my last day for antibiotics IV and I have only 3 more nights of overnight IV feeding sessions. Must have calories .... is my new mantra. I am doing well on the proteins but I need more calories. Hopefully once I stop the overnight liquid feedings my appetite will increase. Anyway that was a real good piece of news. Oncology appt tomorrow at 3PM. Dum da dum dum. Thanks for listening.

Busy, anxious week

There is a lot going on this week. We have our first consult with the oncologist on Wednesday. I start my exercise regiment today with the trainer and continue on with the acupuncturist. I am working hard to get my calorie count up so this can be my last week of TPN (liquid IV food). I am also going to work hard this week on getting in touch with some organizations that are available for various types of support. I am finding that we are both in need of information on many levels. It is real easy especially since it has only been about 1 1/2 months since this whole thing started to feel like we are doing this all alone and the truth is there are a lot of resources out there.

Ash gets in on Thursday and Sunday nite we are headed to Chastain to see James Taylor. Great reward. Just wanted to give myself a heads up on the week. I think I might even add a post later on today.

How lucky am I

I have had a busy day today with just stuff which is good. Chores around the house, cleanup and trimming outside, and the other usuals like naps, IV's and the like. It has given me a chance to be relaxed and to ponder. Most of what has crossed my mind today is how fortunate I am to have the support of family and friends like I have and especially to have Cathy around to be everywhere and everything. I love her for many things but mostly for her presence.

Ash is coming in town this week and that is always exciting. Ryan is at his new job (the first Gordon Ramsey restaurant in the US) and I think the coming week is the opening. By the way, thanks Joel, for all your background research and help.

I have been online this afternoon doing reading, research and questioning. It is a very depressing task so I am going to work tomorrow on finding ways to stay upbeat while reading about the Big C. We have some friends stopping by with dinner tonite and the Preakness is about to start. Until the morrow.

Energy is up

My treatments today were great. My energy level is really up. I almost feel guilty with how I have been pampering myself with some of these luxuries. I think I am about 3 weeks away from chemo so I keep reminding myself that luxury is good. I promised you a short story and if you look at the links to the right you will find one. Once you click on it, remember that I wrote this many years ago. The title is a little unsettling but I really did not want to change it. For those of you that are willing to indulge me and read it feel free to give any criticism you like. I promise you I can handle the negative as well as appreciate the positive.

As an aside, a good friend, Will Christopher went in for prostate surgery recently and not only was the surgery successful but he was worried about spread and his reports came back all clear. Way to go Will.

Update

A lot of things are starting to happen in a short period of time. Foremost I made an oncology decision with much help from resources locally and in Arizona. I am going to start my chemo here with Dr. Dobovsky of Atlanta Cancer Care. The place to be for pancreatic cancer treatment is with Dr. Daniel Von Hoff at the Arizona Cancer Center in Phoenix. He and his team develop what is now the standard of care in this arena. His staff recommended that as early in my cancer as I am, I should start with the traditional treatments *(that they developed) and then plan to consult with them later regarding targeted treatments and/or clinical trials. I am waiting to here from Dr. Dobovsky but I assume I will start in about 3 weeks. I also start with a physical trainer on Monday. This is the point I have to admit where it starts getting very real for me. I approach the next few weeks with a degree of trepidation. I will keep the blog going and will also look for all of your comments in return. Today is massage and acunpuncture. Cool, huh?

Need some help

We had a good but very long day yesterday. Went to the surgeon and got a great post surgical report. The site is healing very well. All staples, tape and active tubes have now been removed. The infection all seems to be gone according to yesterdays CT Scan. Also had my first acupuncture session which, I think went well. Going again today. I actually slept better last nite than I had in a while. Cathy really hit a wall last nite. I am hoping she will sleep in this morning for some much needed caregiving rest.

I do need some help. I need to start with a personal trainer for the next few weeks. I am not looking for Hans who is always pushing for 10 more reps. I need a trainer who also understands phsiology. I do not have exercise limitations other than being conscious of the nature of my surgery. If any of you have any ideas or names please feel free to call or email me.

I am actually ready to get started so let me know if you can help.

first nite out

Cathy and I went out to a real social occasion last nite and I ate real people food. There were two good parts to the gathering, 1) of the 20 people there I was the only male and 2) the catered food was a good mixture, good spice and good tasting and I went for it. After we got home I laid in bed in fearful anticipation of the war that might erupt in my digestive system. Lo and behold, nothing but digestion and the slightest amount of indigestion took place. That was big. So Bailley, good luck at school next year and thanks for being so loved that Raiford Gallery threw you a going away party. We ate at a new restaurant next door to the gallery (but in the same building). All I know is Hoyt owns its and he makes incredible breads and specialty dishes and sandwiches. Find out the name and go visit.

Have all my followup doctors appt's today and tomorrow. Hopefully will come out with fewer tubes and IV"S. Will keep you posted.

It was good to see and talk to some of you today. I have been able to stay out of bed all day and not get too worn out. I only wish I was taking in more calories. I am sure that will come with time. For those that are interested, I have decided to embark on my pre-chemo strength and endurance program in four ways. Exercise, massage, nutrition and acupuncture. Tomorrow is day one. I look forward to it all. Speaking of Day one, today is day one for Joanne Derrico (for those that know her) for her brand new hip. Good luck, Joanne.

The next three days are kind of med days for me. Home Health comes in tomorrow to draw blood, clean tubes, checkIV's and change dressings. I also hope to have my first acupunture visit. Wednesday we meet with the surgeon for a follow up and to see what else can be removed (tubes and such). Then Thursday is with the infectious disease doc to see if I have recovered from the infection I got when I decided to return to the hospital. Can't wait.

Be kind to your partner, be kind to you children and save some for me. good night.

It is late and I am having trouble falling asleep so I thought I would approach my new found friend, Mr. Blog. I love the way he now has some of you talking to each other. Feel free to use the comment fields to exchange information or even to ask questions of each other. I have discovered that a blog is a number of things all bundled together. Obviously, it's a journal, an effective way to disseminate information, an opportunity to be mildly voyeuristic as well as exhibitionistic, a place to garner insight into the thoughts and actions of others, a home place, somewhere decisions may or maynot be made, a place to be alone with a lot of others near, a community. I really like the community aspect of it. One can dart in and out as desired or simply sit on the sidelines and observe. You can be you or anonymous. I can be happy, sad or jealous (as I am that Cat's blog is so much prettier than mine). So I decided that I will work on creating my uniqueness through imagery of words. Which brings me to my first point. I decided today there are three ways to approach my current condition, which is now formerly pancreatic cancer. 1)I can give in to it and let it run its course on my body, 2)I can seek the best choice of medical help and follow their instuctions to the letter and hope for the best, or 3) I can seek the best choice of medical help that I feel compatible with and along side them serve as my own advocate in seeking out new ideas and bringing them to the table for discussion. I have chosen door #3. Door #1 reeks of Mr. Smith's thoughts on inevitability on the original "Matrix". Door # 2 is not bad but seems to be an older medical model that weights the benefit of newer accepted technologies to the newly diagnosed. It is getting late for me so recognize this particular post is a wee bit self indulgent. Door #3 allows for strong medical advice and input, always keeping an eye out for the newly conceived and for something I strongly believe in .......LUCK. It is an important part of life that is most beneficial when you are activly participating in the game of life.

Finally, I think I will have a link to my short story this week. It is a sweet little story that I wrote in the 1999-2000 time frame. I completed about 90% of it back then. The balance was completed before the surgery.

This will be the rare post as I was kept awake by some rare thoughts.

I am a little hesitant to say I feel as well as I do. No pain meds today. I have eaten more solid food, not enuf but still more than yesterday. My body is taking to its own elimination process better and I can feel things inside of me feeling healthier. I am also feeling the need to be more social. I cannot predict my stamina and will listen to my body but I would like to start seeing some of your happy faces. I thank you for letting us have this healing time cuz it has worked well. For both body and mind. Please coordinate any visits thru myself or my social director, nurse, loved one, and chief missus-of-me. Otherwise you might not get thru the front door. I promise you a better post tomorrow but I only have about an hour before I get hooked up to my IV and the weather is too nice not spend it looking over the garden with Cat. love to all, P

End of day

I have had a very good day today. My strength and energy levels were much higher today. My appetite was not but I managed to force myself to eat some food orally. The IV food feeder bag has been cut back from 16 hours a nite to just 12 hours tonite. Bruce and Jeff came by and spent the afternoon cuz Cat and I had scheduled massages with Jeff. Cat needed a good massage and I need to stimulate blood flow back into these lazy muscles so I can be ready for chemo and radiation. Everything I read says the stronger the better. I just should not have waited until the end of the day to post cuz I am feeling very drained now. I managed to stay out of bed all day today. Being a gorgeous day outside certainly made it a lot easier. Cat has got our garden areas looking Tony the Tiger GREAAAAAT.

I really feel my mind is coming out of a fog. Cathy says I have been having some very animated conversations while sleeping. I hope that is the drugs and not the beginning of new habits. I often find myself asking her why I have to do something a certain way only to find out that was an instruction from one of my dream people not the real ones. It is very strange to sometimes not be able to discern the real from the imaginary. Oohh, that's what they call a flashback. I don't remember there being that many doctors in my life back then. Well, I am fading fast and my feeding bag is frantically waiting to fulfill my culinary fixations. Sleep well.....

A day for first's

I am learning that shuffle steps do become "big boy" steps and on and on. It also seems to be the small things you notice first. Had a few first's today. You may want to cover your kids eyes for some of these:

Cat gave me my first sponge bath today after leaving the hospital. She is a great nurse.
I peed today standing up for the first time at home and actually did not have to worry which end something would come out of. That, my friends, is a big confidence booster.
I had a yogurt for breakfast and an egg for lunch and I did it voluntarily. The goal is 2000 calories a day of which 40% needs to be protein.
I took a pain pill today but it was the first one in 48hours. This was big also.
I have been out of bed for 5 hours and am still counting.
I started reading again today.

These are all such little things I took for granted but now recognize how important they are to my progress and my internal boosting of confidence. There are many other small things I have noticed particularly with regard to speakable body functions and those most would prefer to hear nothing about. One suggestion I have for all you couples out there. Give each other a sponge bath. The major rules are that the receivor cannot help unless requested. It is a real test to be totally dependent on someone and to have to listen to what they say. You can make suggestions on what you would like or how the bathor can be careful but you must remember that you cannot take charge so I would speak nicely.

That was my bodily function post for the day.

Hello

It seems like the next day is now feeling just a little better than the day before. I hope that means I am officially on the other side of recovery. I have been taking very short, shuffle walks in the house and in the backyard. You know the walk, the one you swore you would never do after watching your aging parents do it for years. I think my final weight loss count is going to be 25lbs. It is interesting to watch where you loose the weight when you are also not doing much in the way of exercising. I have that somewhat hollow eye look. It is enhanced by the fact that my eyes are dark. I also cannot sit on a hard surfaced chair for any length of time without becoming very uncomfortable. I now suffer from the male Italian disease - Noassatall. If I can get through the healing of the surgical wounds and get back to feel like eating then I will recover quickly and be ready for the chemo-radiation barrage. I think strength, stamina and attitude are the keys to the highway of recovery. If the posts starting getting longer and less disjointed then you I am feeling better.
Thanks for waiting until next week to come visit.

Cat keeps train running

Hello from Cat,
I hope you are not frustrated by now. Paul got released from St Joe's yesterday and it has been a rollercoaster ride for us both. Of course, we are thrilled to be home and Paul can wander to his heart's content in and around the house. He knows to go no further or I will kick his you know what ( not really but the threats seem to work). After we made it home, I got some prescriptions for him and then the home health care nurse paid us a visit. Her name is Kathy, so thank god I don't have to remember that..... I got a mini course in IV management. She is a good teacher and I think I got it down. No choice, must do it and do it right!!! We are now giving Paul liquid nourishment (PT) in a nice bag that we hook up to a pump and he can put the bag in a backpack and carry it around with him. He is on 2 types of antibiotics through the IV and he checks his blood sugar as well. The refridgerator looks like something in a doctor's office.
His temperature is staying down now, thankfully. He still feels nausea, so he feels that it is best to wait until next week to see visitors. As far as food, he doesn't have the appetite yet. I am rooting for the day when he can sit down to a good meal and use hot sauce. I suppose I should document the day with photos. I will post again because Mr P gave me my permission slip and I am really wanting his fan club to know he loves you all. He will be happy to see you when he gets more energy. We both could use a good night of sleep. I will sleep better when I know he can. Thanks to all of you who have called asking about his progress. We will want to see you , and as I get the time, I will call or email you. If you want to contact me, my email is cathryn.artist@gmail .com and I would love to hear from you if you have questions about food and or "visitation rights". It is so beautiful outside, I am hoping that I can get him out in our backyard to "hold court" or at least hold himself up. It is hard to see someone we know is such a vibrant person not be able to jump right back into his life. I have great feelings about his future and with You All to help, and believe me, if you feel helpless, there is alot of time down the tracks where we can use your help, we will get him up and running and smiling his great Paul smile.
Love to all of you bloggians out there,
Cathy

hi

HEEELLLLLOOOO BIG BAD WORLD. I have been out of touch lately hiding with in the sheets to stay clear of the st. jo meanies. Old Mr. Fever, infections and pains have been chasing me around. I have had great help from the nursing staff trying to keep these evils at bay. Sometimes successfull, sometimes not. All in all it seems to have worked cuz rumor has it I may be out of here again by Wed. I just will go home with a few extra crime fighters by my side and intructions to take it easy. Again it has been great to come out of a fog and read all of the cards, musings and words of support from everyone. This humble body lives in great appreccitation of it's often unwarrranted, awesome waves of good feelings. Make sure you are all saving more for others as well. thanks. P

Sundaze

Hey everyone,
I thought I would give a quick update on Paul. He is resting today after a restless night.
We did another CT to see what is going on inside. Dr Daneker said he wants to keep him in for a few more days (daze). He said that Paul may have an abcess that has developed, so they are putting in a drain and they want to monitor him for the next few days. I hope that he will get some relief. He had a fever last night again and I hope they can keep it down with the installation of the drain. Melanie has been so great to sit with him today to help see that he rests. I will be back at the hospital later this afternoon. Thanks for all of the support,
Love Cathy