Again, I am short on finances, so I have to scrape to come up with my payment. I’ve been saying the charge is for the monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic, but I’ve come to be informed that I am a clinical trial, and as such, do not pay for medication. What I pay for is the case management – for medical case management. I get the PB meds for “free”. Ok, still doesn’t change the fact that I am not going to be able to afford this much longer unless something happens. The cost is $4,500.00 for a month of Case Management which includes the Sodium Phenylbutrate, AminoCare A10…[emphasis added]

This is unacceptable by any standard, and I hope the Texas Medical Board is reading this. You don’t just “one day learn” that you are in a clinical trial. Nobody can just take someone’s data and use it however they like. You have to be given the option to opt out. She is being denied informed consent to be in an experiment. What IRB signed off on this? And why do they walk free? This is the type of behavior that put Burzynski’s medical license in jeopardy last year.

On Nov 20th, she loses her job with Exxon Mobile, where she had been temping. She thinks its related to an interview she had with the company for a permanent position where she disclosed that she had cancer.

In mid-January, she is aching all over and she believes the tumor in her breast is growing. She moves a PET scan up from the end of February to as soon as possible.

And then her online journal ends. It ends with February 2010.

She continues to post consistently on a gardening hobbyist board she started in 2004. She keeps her medical issues out of it for the most part, though when we hear in Oct 2010 that she has started a new cancer treatment, she mentions that it kept her from attending a plant swap:

Dear Members,Sounds like y’all had a GREAT time! I’m so sorry that I missed it… I’m

dealing with a new treatment path, and unfortunately the side effects make it

difficult for me to function early in the morning/day. Hopefully I’ll be at the

next one! […] As far as the cancer I am fighting – I keep reminding myself that this too shall

pass. Please keep me in your prayers 🙂denise

Living while Fighting, Surviving metastatic breast cancer…

cancer Sucks!

In June 2011, we the members of her gardening bulletin board arrange for a day working in Denise’s yard:

Denise needs help with getting her yard in order. If any Houston-Plant-Exchange members would be interested in participating in a work day at Madame Moderator Denise’s home please contact me directly. I would like to coordinate for sometime in the fall, it is just too hot now. So, let me here from you and we can get started with the planning and pack a picnic and have an awesome time. Jennifer, do we have a tentative date for the Fall Plant SwapThanks,

Beci

Asst Moderator

Please call me if you have time to help our group founder, Denise. She needs someone to go to her home and get ALL her potted plants to take care of. She said there are only about 5 or so. She is in the hospital and cannot physically get them. You need to have time to go get them and keep them watered. She needs a few other plant related “honey do’s” done also.

In February 2012, it sounds like she is moving . Her landlord had waived her rent for her when she got cancer:

Finishing up with my moving sale and have some pots left over. If anyone is interested in free pots – plastic and ceramic, decorative and nursery – get in touch with me. I’m moving very soon, so Must be picked up by Wednesday, Feb 29.Thanks! denise Living while Fighting stage 4 metastatic breast cancer…

That was her last post on the board.

We later find that she has moved back to Corpus Christi to be with her parents and get periodic updates from board members:

P.S. HPE Madame Group Owner, Denise aka lilybloomers, has finally gotten her home packed up and she has moved to Corpus Christi to live with her parents so that she can continue to fight her battle with breast cancer. Be strong my friend.

In November 2012, we get the sad news:

The creator/founder of the Houston Plant Exchange group has lost her battle with breast cancer. We are all very saddened by this news. We are grateful to her for her for all her hard work, energy and determination that she put into making this group successful. Several similar groups in other cities were started based on the HPE group, with Denise’s assistance. Oddly she wasn’t even really a plant enthusiast like many of us, but she saw a need, and somehow succeeded despite this, where many other similar groups had failed. She was an avid board gamer, and was instrumental in starting many board gaming groups here in the Houston area. She was a tough, strong person when she needed to be, but had a heart of gold and a wonderful fun spirit. She will be very much missed!

Just a few months later, her facebook page has become a memorial , a place for her friends to meet and remember her.