Want to Help?

When you are sick with a disease like this, you hear everyday how much people want to help.  They are always saying things like , "Just let me know what I can do to help!"

First of all, if you know me at all, you will know this is not easy for me to do.  Prior to my diagnosis, I rarely ever asked for anyone to do a thing for me.  I prided myself on being independent (to an extreme degree).  I've never really even reached out post diagnosis, beyond asking family to help out with Katie, or for someone to feed the pets, but here it is --  I desperately need some help!  If you are serious about wanting to help, read on.  If you are just saying it because it's the right thing to say, stop now, because you won't enjoy hearing this, it's not a fun help or anything you'll find interesting.  

WHAT I DO NOT NEED:

My goal here, is NOT to make anyone feel bad for not helping.  You do not have to tell me why you can't help.  In fact, PLEASE AVOID DOING THIS.  I hear it every time I post anything that makes someone feel guilty for not helping, and I really do already understand and know that life goes on outside of cancer and you are busy living your life, working, and taking care of your own obligations and responsibilities. I was on that side of the fence not so long ago, and I had the same types of day to day things to deal with.  If you KNOW you are too busy to do anything extra, that's fine! Leave it at that.  If not, and you are really looking for a way to help out, read on.


If you are still here, you're either really curious at this point, or you actually want to see if this is something you can help with.  I am seriously hoping that one of you is the latter.

Here is my situation:

The local oncologist, which I have been using since initial primary diagnosis, and I parted ways recently.  I have an opportunity to do a clinical trial which is going to involve a lot of travel to Houston and back.  Jesse is out of paid time off, so I'll be dealing with a lot of this alone.  I can handle this part of it.  I've done it once, I lived, I can do it again.  So all of you who thought I wanted to drag you down to Houston with me can breathe a sigh of relief.  I know everyone has other things to do and can't go. You've all given me your reasons, this is something I CAN do on my own.  Below is what I can't seem to find a way to get done with the amount of time I have between 8am-5pm on weekdays.

A little more information and background:

MD Anderson is insisting that I have a local oncologist that is willing to work with them in case anything goes wrong during the trial.  I am searching for a local oncologist, also, to reduce the amount of trips I have to make down there.  To give you an idea of how many trips this will be, the first month I have to be down there for items the trial specifies can only be done at MD Anderson twice a week.  After that, we are looking at another 2 days once a month.  I will be working 40 hour weeks the entire time I am doing this.  I will be working through chemo and vaccine treatments, and between scans, blood tests and whatever other things they can come up with to measure the effects of the trial.  The other non-required items that do not specify they have to be done on the site of the trial, are things that they can do here with a local oncologist.  This would save me at least a few additional trips a month and make my life a lot less hectic.

Here is the problem:  

I am finding that most oncologists here in the Dallas/Fort Worth area do not want to work with me on this.  They want to stick with FDA approved drugs and are not willing to be my local oncologist, who is just here to administer the things outside the trial that are routine. None of them want to be here in an emergency should the trial cause unexpected side effects or issues.  They would rather be in control of my care and my life, controlling the shots, and want me to stay within this box and go with their pre-packaged method of "standardized care".  Just so you know, there is no standard of care that has been specified or documented for this disease.  There is only the options of FDA approved drugs and clinical trials, none of which have been proven to be a cure so far.  The statistics suggest that going with the approved FDA method will give me about 5 years to live.  This is not ok with me.  On this time schedule, I may not even get to see my 13 year old daughter graduate high school!

The good news is, if I go with a combination of both trials and standard FDA approved drugs, I have a good chance to live longer.  FDA approved drugs are always there to fill in the gaps and are not going anywhere.  The trials offer, at the very least, a chance to extend the number of drugs available that may be effective against my type of cancer.  When I run out of drugs that are effective on my cancer, which is constantly changing and find a way to mutate and defeat the drugs method of attack, I die.  If I throw a trial in here or there and it's successful, it might give me additional time, longer periods of remission, a better quality of life, or even possibly be a cure.  If I don't use these trial drugs, and they are successful, I may not be alive 10 years down the road when they get FDA approval.

I feel this is my best hope.  I am committed to this theory, and this is the path I am choosing.  I HAVE to find a local oncologist to do this as soon as possible!  MD Anderson is requiring I have this local oncologist in case of emergency.  I do not have enough hours during the business day to make the phone calls necessary with my work and personal schedule to find this person.  I am working a full 40 hour plus hours a week, am very stressed out, and trying to cope with the day to day issues and stress of living with this diagnosis.  I'm already looking at taking a lot of time off work due to the MD Anderson trial and possible side effects from future treatments, and will quickly run out of paid days if I were to have to take a couple of weekdays of to accomplish this.

What I am asking for, is NOT oncologist referrals. PLEASE, unless you know for sure someone fits these specific needs, refrain from saying stuff like "So and so helped my friend and they thought he/she was great".  This is not what will be most helpful right now!  I have plenty of people refer me to oncologists, but most of them were willing to do standard assembly style type treatment and do everything their doctors tell them to do.  In addition to this, most people are facing low stage cancers that have cures.  Any oncologist can handle these types of normal situations.  What I need is someone who can work with me on my unique care plan.

What I need right now, is for someone who has the time (during normal weekday business hours) to make the phone calls and do the research necessary to find me an oncologist who is willing to work with me. I would prefer someone close to my home in order to decrease the amount of additional travel time I will have between my trips to Houston.  I prefer not to have to drive into Dallas, unless it's my only option.  I am holding UT Southwestern as my ace in the hole, but avoiding it due to the commute and traffic.  I think I will have enough to deal with, with the 4 1/2 hour each way Houston trips, 40+ hour work days, and treatment side effects, that the last thing I want to do is come home and have to drive through dallas traffic to go for the in between things.

If you are serious about helping, please let me know.  Again, please do not call or message and explain to me how much you wish you could and why.  This is something I desperately need help with and really need to have completed by the end of next week.  If there was any way I could afford to take the time off work to do it myself, I would.  I hate to ask for stuff like this, but I'm just unable to fit anything additional into my already crazy daytime schedule.   If I could just get the list narrowed down to a small list of people who are already pre-qualified to meet my criteria, I could probably find the time to make a single phone call a day or something to screen them further.  Can anyone please help with this?