The Colon Club

Holly, thanks for posting you answers below. That was so helpful. Can you please tell me how extensive your cancer was, what sort of treatments you went through and how you managed to stick around long after the doctor's predictions? That would be so encouraging for me and my friend. Congratulations to you - you are a fighter. Looking forward to your answer.

Musiclover and Mark,

Within the text, I trust that you will find the answers you seek:

…We learn
…we teach
…we provide…

Musiclover, it is not how ravaged my body was or was not by colon cancer. This disease is bigger than you, me, and Mark. What is important is that my faith in God did not waiver and I always believed that ALL things are truly possible! I have said many times that each of our journeys are unique. Mark must believe that despite what is in right in front of him that ALL things are truly possible.

Holly

Holly, with each post you become more remarkable.
It is 4 am and not being able to sleep, I came to my fovorite place to
look for encouragement. Boy, did I get it!.

I am going to put together a plan and post your message over my desk.
Tomorrow I will start fighting again with a positive attitude, better
eating habits and everything I can to get back to a winning attitude,
things I have lost after 2 years.

Thank you so much for what you are doing and for taking the time
to write this post, everyone on this board loves you.

Carol Connell
NH

Wow Holly. That was very thorough and inspiring. The one thing that stands out is "MD Anderson". I continue to hear great things about that hospital. I've called and been told, unfortuntately, that they do not do second opinions. If Mark wants to make an appointment he has to put up $13,000 before he walks in the door. It almost seems worth it but then what? How does he pay for the treatment? He only has insurance in Los Angeles and that is only for the County Hospitals.

This goes through my mind constantly. Now he is waiting (and Waiting!) to be considered for the second trial to begin. They finally took a PET scan yesterday - who knows how long it will take to get the results for that. Meanwhile I dream of flights to Texas or other hospitals to get yet another opinion (had three already - Mark's prognosis is "poor" - extensive cancer throughout liver, lungs including soft tissue).

He's so tired and just wants to get started and believe in whatever treatment he gets. He trusts his doctor here, a new 30 year old on the scene. He truly cares for Mark, I can see that. I wonder if more opinions and disappointments will effect his healing. Soon he'll be on the trial and in my mind if it doesn't work, I'm finding a way to raise the money to take him to MD. Right now HIS decision is to go on the trial. This is what HE wants. Sometimes as a caretaker it is difficult to listen to the patient and what they want. That is probably because I've caught so many mistakes.

If I weren't there from the beginning the first surgeon would have butchered him. I did piles of research about rectal surgery and found the best surgeon in NY who performs the least invasive type made to preseve one's manhood with a reversable iliostomy. He referred Mark back to L.A. to a magician that worked a miracle. Mark's first County surgeon said he would definetly have a permanent colostomy. Wrong!!

I keep thinking there is an answer that will cure him. Then I wonder if I'm not creating more stress and if should back off and let Mark settle into treatment, whatever that may be.

I know this is rambling. Thanks SO MUCH for your input. I so appreciate the time you took to post those letters. Hope to hear more from you and so happy you are doing well.

Talk with you soon.
ML

hi musiclover,
are you sure about md anderson? i know several people who have gone there for 2nd and 3rd opinions so im sure they offer that. can mark apply for social security disability and medicaid? md anderson accepts medicaid. also look up christine on this board she is in los angeles and had liver surgery and is doing well. email her and see where she was treated i know in a few of her posts she had stated she was on med cal so maybe there is another option in la for mark instead of the county hospital. they need to get him on treatment asap. chemo with avastin has helped me tremendously and i have only had 6 chemos, i only had 3 small liver mets but still it was mets. good luck!

missjv

Yes, I'm sure. I couldn't believe my ears when the woman on the other end of the line told me they wouldn't see him without the $13,000. It's worth another call though as often two people say two different things.

As far as medicaid (or Medical here in Calif), Mark applied and wasn't eligible. He owns property in another state - not his primary residence. He rents it for a paltry amount and that is his measly income. Selling it is daunting and seems to make him feel worse anytime this topic comes up. That money would go so fast on doctor bills then he'd have nothing. Then he'd have more cancer from the stress of it all. Don't ever go without health insurance! That is the lesson here. Fortunately California has other options for those that don't qualify. Sadly he must stay within the County Hospital system so it is better than nothing.

I will give them another call. Talk with you soon.

hi,
does mark have anyone he can put the deed to his out of state home into someone else's name for temporary? then he would show no income or no property ownership. it is a shame that he doesn't qualify for help, yet we have so many illegals here who abuse our system and get free medical care it is disgusting and they pay no taxes so go figure and the one's who desperatly need help can't get it somthings wrong. welll good luck to mark he is in my prayers along with the rest of the folks on this board.

missjv

Just a caution - be sure to check out all the regulations before doing something like suggesting that Mark deed his property to someone.

Some programs look back as far as five years when checking income and property - so giving away money and property does no good. I don't know if this is the case in California or not, but definitely check.

Hannah

My husband and I went to MD Anderson after he had talked to three oncologists. I do remember when calling MD Anderson it was like you had to be accepted, but once accepted you are always considered a patient. It took some follow-up on my part because after we submitted paperwork and such the call backs were slow to come.
Some of the top reasons they said why someone may not be accepted is if they are currently undergiong treatment or have a wound.
My husband had a wound, but was on a wound vac and was nearly healed so they let him in.
If somone is undergoing treatment I was told that once they are finished then MD Anderson is a possibility.
I was so happy with the professionalism down there, but if you go make sure to get a copy of your records. We met with the doctor before the CTs so no one consulted with us after that. We got the records and discovered that there were some spots (maybe cancer) on his lung that noone told us about.
If it would be helpful I believe I still have the name of the person that I talked to down there and the name of the doctor. Maybe calling up and saying you want to make an appointment might work.
I don't know, but let me know if I can be of any help.