Built trust?

Dear Readers,
I have heard bits and pieces from my advising council that some of our audience feels they can't trust the blog. While I admit to typing vaguely at times, I am not avoiding truths. As the youngest, I know how it feels to have incomplete information - but as I have grown up, I have also learned that there are reasons behind that (most of the time). Reasons some specifics have been avoided:

1). The information changes... we have no desire to have 30 people calling Kathie at the same time because she had a a fever of 103 which turns out to be from a cold... we may think she's neutropenic, but we don't want to present that to who knows how many people until we know if that is the actual information.

2). Too many cooks in the kitchen. We have/continually appreciate all of your thoughts, prayers and support... but we are at the point where we have collected A LOT of information (thanks to the help of many of you) and it is now up to Kathie and the immediate family to sift through this, and for Kathie to make the decision for herself about what she wants to do for the next step in this process. Until this decision is made, there is not a lot to say. If you really want to read an entry about the 10 different diets/alternative medicines and 15 clinical trials we are investigating, that can probably be arranged. (*These numbers are not accurate... just trying to make the point that there is a lot of info being passed via e-mail by our family and I am really hoping you do not ask for a post like that - it is tedious to sift through all of that!). Either way, please rest assure that we have looked into all sorts of alternative routes and clinicals being done around the world.

3). Positive attitude. The reality of the situation is hopefully clear to most of you - it's not sunshine and rainbows - Kathie made this clear in phone calls and letters. I did not feel it was necessary to repeat Dr. Eng's time estimate (made at her December appointment), especially since Dr. Aklilu has a much more positive approach - pointing out that none of us are God and we do not know when any of our time is up until He decides it.

I have tried to post links (more so at the beginning) for you to look into things further if you would like. Kathie could not/can not have liver resection, this was clear several months ago - and it reduces treatment options and life extension.

There is definitely those who believe that if you have a mental timeline, your body will start to follow that physically - so the more positive we can be (without being fake), the better.

4). Absorption time. Sometimes we hear some news, and we don't want to share it immediately, until we have time to absorb it, or until we have time to think about plan (what are we on? G? L?) or maybe just because we want some personal family time. The reason that the date of her check-up appointment was not posted was to avoid getting phone calls that evening to see how it went. I ended up posting on that day because Kathie had already told several people the date as had Lynette (to focus some prayer efforts)... but it was not easy to post that day, and again, it was difficult to decide how specific to be because nothing had been decided. Below is a clip from that post... brackets indicated further explanation:

What does that mean? Well, the cancer has grown and spread. There is some indication that it has spread outside of the liver now. [This was poor wordage - the cancer has spread outside the liver... it is in the cavity that holds the organs (there is some special name for that)... some indicative spots on the lung that were not there before, and some liquid in the lungs that they think is probably cancerous. (You may remember that she had fluid in there before - that was not cancerous, it was a side effect of the cancer most likely... this new fluid has a chance of not being cancer, but that will not be known until it has to be drained). However, despite the poor wordage of this - the extent of the spreading at the end of the day only mildly matters - the fact that the treatment was not working in general means that it is not good]

Bob, Kathie, Lynette, and Lauren talked with Dr. Aklilu about the next steps. A nurse representative for the clinical trial that is currently going on at Wake came in to chat with us while Dr. Aklilu set up an appointment for us at Duke to discuss their clinical trials there, and he also contacted Dr. Eng to see what's going on at MD Anderson. So that's where we are [Slight update: after discussing clinicals with MD Anderson, it was decided just to focus on those going on at Duke and Wake. The ones at MD Anderson are mostly new combinations of drugs Kathie has already tried... and it is a terrible inconvenience to have to do clinical trials that far away. Those at Duke and Wake are totally new. She has an appointment for Duke (this week) and a homeopathic doctor (mid March) coming up. Bob and her will be meeting with Dr. Aklilu next week to review what their options are to hopefully make some decisions about whether she will/what she will be pursuing. Christen has been looking into several cancer diet plans and alternative meds and bought out the cookbook section of the bookstore - though in Lexington, I'm not sure how big this section is;) j/k - she bought many books online and I have mailed her a couple of my books on raw foods. If you are eating with Kathie, please do not sneak her food - once they decide on which diet plan to follow, it will have to be strictly followed to make it worthwhile at all. ]

5). Game of telephone. I am in Muncie, Indiana - mom is in North Carolina. Bob e-mails/calls me, and I talk to Kathie on a regular basis, but there is a lot of technical stuff that gets lost in my brain that is also trying to balance my thesis project and school in general. I am doing the blogging because it's what I can contribute from far away, but I guess it has also created somewhat of a disadvantage for some of you because you may feel like some things are being left out. I apologize for that and will try to be a bit less vague.

6). Small changes. Kathie has cancer and takes vitamins, alternative meds (astragulus, CQ10... though I think she has stopped astragulus and we're trying other stuff), and pain meds.... she has good days and she has bad days. I am not going to post every time she sneezes (not to mention I don't know every time she sneezes). As a general rule... during the time that I am not posting, she will have a few off days which may include needing more pain meds, taking extra naps and occasionally vomiting. Good days are still slow moving, but she'll get out of the house, unpack the moving boxes, play sudoku and bridge in the paper, and talk on the phone - and if the grandkids are around, she plays with them. She has a constant stream of visitors. Janet (Bob's sister) just left, as did Kathie's brother and sister-in-law (Bill and Maureen), as did Bob's brother, Richard. Kathie's sisters, Eileen and Carole are there for a visit now.

Nothing has been decided about the next treatment step, so there is not much to say - the research and professional opinion collecting continues.


Again, I apologize if any of you have felt excluded. I suppose a general rule would be to assume it is probably slightly worse than I am typing because I am trying to keep everyone a little more upbeat - I am not lying, but I am maybe saying it in a more positive tone. Of course, if you call Kathie you are going to get more details... I can only write so much. On that note, please do not constantly call Kathie, thinking you are missing out, phone calls are nice, but too many/too long can also be very tiring and take away time with guests and family.

Thank you again for being a part of all of this with us. You are all very important to us, and we can't thank you enough for your support.

Love,
Lauren