Keith Friend's Journal
Call me 'Ambassador Keith'...!
Written Dec 17, 2013 4:05pmHi,
It’s funny. Sometimes, when I update this journal, I’ll re-read my previous post to remind myself what I have already said as to not repeat myself. I don’t remember typing that one at all. I do remember the act of updating the journal but I have no memory of actually saying that stuff. Those must have been pretty good meds. I’ll try to be a bit better with my grammar and spelling this time.
I’ll start out with the fun stuff. Remember a few months ago when I mentioned that a pharmaceutical company might want me to be a patient ambassador for them? I had thought that had fallen through since I did not hear back from them. Lori and I had joked that they probably didn’t choose me because of the picture I had to send them; one with me in my cowboy hat. Well, I was wrong. I received a call just a day or so after that previous journal post. It was a representative of the marketing company that recruits and manages patient ambassadors. They said that they had a cancellation of a potential ambassador and asked if I would like to participate. The trick was that the training was the next week and would take 3 days. I had a couple of vacation days left so I said “Sure!”.
Things happened extremely quickly after that. I was over-nighted a contract and was asked to submit a written version of “My Cancer Story” as it was this story that I would be asked to present during the training. I spent some time robbing stuff from my Caring Bridge site and came up with a decent rough draft of about 6 – 7 pages and sent it in. Travel arrangements were set, lodging was secured and I packed for my ambassador training. I wasn’t sure what to expect. I’ve been speaking to some small groups around town for several years; usually setup by me and very informal. What was to come was much different.
On Wednesday evening, I was picked up by a car service from the airport in Virginia and taken to Williamsburg. There, I met the marketing team and other two ambassador trainees. We had a nice dinner, got to know each other and asked lots of questions about what was to come. We met the next morning and enjoyed presentations from the pharmaceutical company that is sponsoring the program. We learned about the company, the drug I had taken so many times during my treatment and what we would be doing as an ambassador. Later Thursday, we met, again, with the marketing team and started working with a professional writer on our stories. It was very fun as this was the first time that I had really ever had a ‘writing lesson’ since school (when I didn’t like to write). We massaged and trimmed our stories and added details that would provoke images or emotions. We wrote and re-wrote.
Friday, we were treated to a breakfast an existing patient ambassador who has been telling his story for more than a year. We had lots of questions about the types of events where he had spoken and about his experiences. He said that he really enjoyed being an ambassador. Hearing about his experiences and then his own personal story motivated me to try even harder to make my story the best it could be.
The events where we could be asked to speak might be something as small as a few doctors to a large convention full of survivors and medical people. Very exciting! We continued to work on our stories later that day when we learned that we would be presenting a “little part” of our story to each other. We thought, “okay, we can present to each other. That’s not too bad.” Then a bit later they said that they would be videoing us. I thought, “Maybe someone standing in the back with a camcorder… No big deal.” Then we learned that representatives from the pharmaceutical company might be there as well as others from the marketing team to see us present. By now I’m thinking, “Crap! I better start practicing.” Next, a three man ‘video crew’ shows up with all sorts of professional gear like lights, sound equipment and big video cameras. ……wow. No pressure.
Each of us spent some time with a representative from the marketing company to hone and rehearse our presentations. We each had a turn at the lectern and were videoed. I was last and a bit nervous as the other two were very good. I was surprised at how emotional I got when telling a story that I had told a thousand times before. I’ll blame our writing coach and other members of the marketing company as they coached us to make it personal and pause here and there for effect. It was a powerful experience. I thoroughly enjoyed it. Before we knew it, we were evaluated, said some very hasty goodbyes and were done. We three ambassadors had a nice dinner together that night and headed home Saturday morning. We will correspond with the marketing company over the coming days and weeks to finalize our stories and get them approved by all concerned. We were told that we could be asked to present to audiences as soon as February. I sure hope they choose me as I’m really looking forward to participating at an event. I really feel honored to be asked to be an ambassador and be part of their team.
As far as my treatment goes, I’m having my 4th treatment of FOLFIRI + Zaltrap tomorrow. Each round has been a bit easier than the one before so I don’t anticipate too much drama this time around. This is a good thing as in previous rounds, I’d be getting sick right at Christmas.
My tumor marker is still going up. It’s about 50 now. Although this is an all-time high for me, it is still a rather low number compared to some others. I have been in contact with my medical team and I think I might even have a PET scan next week to see what’s going on inside. From there, we will look at what meds are at our disposal and choose a course of action. I’m thinking that I’ll probably go back on Vectabix + Stivarga. I’m feeling good and looking forward to a great time with lots of friends and family over the next few days.
Amber is home from OU and it’s great to have her back. We are spending Christmas with my sister in Austin and are almost finished with shopping!!! My ‘honey-do’ list is long but manageable. Go OU for the Sugar bowl. I know…. Alabama….. It will be a good game. Boomer Sooner!
Merry Christmas to everyone. On to 2014!!!!
One more try....
Written Dec 2, 2013 9:55amI had my most recent chemotherapy on November 20. We tried the same protocol of FOLFIRI +ZALTRP. The infusion went as normal but I have developed some pretty extreme nausea after this infusion. After so much chemo, I just get sick from the drugs starting around 3 - 5 days later.
In an attempt to stay ahead of any potential new Colitis this time around, I requested to some in for some fluids on Monday - Wednesday. It was also recommended that I take some sort of laxative to get the plumbing started again. So, Monday evening I took the recommended dose for an adult and had 3 pills. Oh man, was that a mistake. This was like nuclear laxative. The cramping and feeling like I was going to explode was intense.
Lori really wanted me to go into the hospital again but I truly felt that my main problem was just to let the laxative work it's self through and then I'd be better.
I'm a pretty bad patient. I tend to moan alot. Contrary to popular believe the amount of moaning at home is directly disproportionate to the amount of aid you receive from a spouse. All I wanted was to be left a lone for a while so I could get a handle on the cramps. It even hurt to talk as it put pressure on your stomach. Many hours later and more trips to the bathroom that I care to count, Things finally started feeling better as far as the plumbing was concerned. What followed was almost as bad. I was experienceing some of the most intense fatigue I have felt before. This kind of fatigue makes you wonder if you think you can stand or even sit
I think I have had more sleep over the past 4 than I have had in the past 4 years.
It was great having Amber home to a full house. I was able to assist just enough to keep the pressure off Lori. She does a great Thanksgiving meal.
I go in for my next round of chemo this Wednesday. We are going to reduce the doscage in an attempt to avoid these nasty side effects.
Say a prayer for Andrew and Myself this weekend. We are going to an Boy Scout camp out. Prayer for warm weather too.
Most of all, please pray for strength. I need to keep my body stong to better cope with these new meds.
No comments about my writing please. I'm on some pretty powerful meds and it makes it hard to stay on an idea and also makes you pretty sleepy.
Take care everyone.
Just a quick update
Written Nov 12, 2013 9:28amI wanted to post a quick update...
I was released from the hospital Sunday afternoon. I spent most of that day and a good part of Monday sleeping to catch up. I'm feeling tons better although I don't really have my appetite back yet. Would you believe I gained like 6 pounds while in the hospital?!?! It had to be from all the fluids they were pumping in me. I really didn't eat that much at all. I would have thought I would lose some weight there.
I'm back at work today and taking it easy. I did briefly speak with my oncologist yesterday. After consulting with the GI doc from Baylor, we will give this same chemo another try tomorrow although we will modify the dosage a bit. Also, I'll know what to look for in terms of side effects and will be able to react quicker this time.
We are looking forward to seeing Amber this weekend as we head North. Lori's birthday is on Sunday so we will be able to celebrate as a family which is nice.
I hope to have no more crazy news for a while. Everyone have a very happy Thanksgiving and don't go shopping at 6:00pm on Thanksgiving day. : )