A Letter to my President and more...

Maybe this post won't make a whole lot of sense but I do hope it inspires many to just be the best person they can be.  Thank you Elena Zhukova for another excellent photo!

One cool thing to happen that the Obama Admininstration helped was improving hospice care decisions.  This is very recent from what I have been told and it happened just last month.  When we were faced with hospice last year; it was most certainly a death sentence for me.  I would not have been allowed to use the TPN, no emergency room visits, no saving my life  if needed, no surgeries to fix anything wrong like replacing stints, G-tubes, and so much more; well now since the passage in September; Hospice is no longer like that.   They have made some nice subtble little changes. 

Hospice has always been a wonderful organization but now it seems to be much better.  The nurse that came out on Friday was wonderful and we filled out all the papers that we needed to fill out; she checked my vitals and could not believe how good I looked despite being in the situation I'm in. I guess I used to look pretty back in the day; don't feel so pretty anymore; Ovarian Cancer has a way of being you senseless with an ugly stick; or at least it has done that to me! LOL

I knew I didn't believe everything everyone was touting about our President being a cold hearted liberal; well I happen to be a liberal too and I am no where near cold hearted.  I still feel he is doing a great job despite everyone else not wanting to work together to make things better for all of us.  I'm all for investining in our country; I even like raising taxes for those who ship jobs overseas; damn them!  I know I'm not supposed to be go political here but my feelings have never changed about our president.  I wrote this letter to him and got this response which I feel is promising and I will share it with all of you.  Hope you enjoy!

"Dear President Obama,

I currently have stage IIIc Epithelial Ovarian Cancer and have been fighting this disease for nearly 8 years (diagnosed 11/15/02).   I'm fighting it with all my might.  I feel that denying many patients access to medical marijuana is very unconstitutional.  I'm very thankful to live in CA where I can legally use this for my medicine and it has saved my life many, many times.  I don't think I would still be alive and Ovarian Cancer is a very deadly disease.  The reason I feel it's unconstitutional is that we are denying patients lifesaving and pain relieving medicine which works with out so many serious side effects.  Many end up starving to death.  Please consider legalization in all states for medical use.  It has never killed a soul; it is not a dangerous drug as we have all been brainwashed to believe. 

I do have a Blog for which I write only the truth of what I am facing; its quite a bit of uncertainty at this stage. We are on the fence about me going into Hospice Care (end of life care). I want to live as long as I can for my loving husband; that's the goal right now. I'm done with treatments and right now I have many tumors that are growing in so many dangerous areas that its a total miracle that I am still alive.

Here is a little history of the drugs I have been on:

Carboplatinum and Taxol = intravenous, every 3 - 4 weeks (8 treatments of each = Dec. 5, 2002 - May 6, 2003)
Gemzar = intravenous every 3 weeks (2 treatments (December 18, 2002, January 2, 2003)

Avastin = intravenous, every 3 weeks (August 11, 2006 - May 17, 2007)

VP16 (Etoposide) + Avastin (August 18, 2008 - December 2, 2008)

Etoposide = pill taken every day for 2 weeks with 1 week off

Avastin = intravenous every 3 weeks (stopped treatment January 3, 2009)

Tamoxifen = pill taken daily (3 weeks taken in July 2009)

Topotecan = intravenous (every week, only completed 4 cycles in August 2009)

Carboplatin = intravenous (completed 3 cycles Oct. - Nov. 9th 2009

I have also had 6 major abdominal surgeries and many minor surgeries as well. I also had another major surgery in May 2010 to install a Medtronic Pain Pump. Its helping some but we may have to turn it up soon since I am getting horrible heart pains.

Here are the surgeries:

November 15, 2002 = Debauking of all cancer, resection bowels

September 3, 2003 = peritonitis resulting from port inserted for intraperitoneal chemo, accidentally poked a hole in intestine

October 10, 2003 = blocked and twisted intestine
April 3, 2004 = abdominal blockage & resection of bowels, small and large intestine.
March 15, 2009 = very large tumor (I've included photo)
July 27, 2009 = Gastro Bypass (duodenum? was severely blocked - resection stomach and intestines)
December 9, 2009 = insertion of a gastro tube for decompression

I've been hospitalized hundreds of times for bowel and intestinal blockages, infections and so on. I feel that my life is worth saving but for many doctors; I'm sure I must be a dime a dozen.

If you would like to know more about me; I have an "About Me" page on my blog:
http://shoppingkharma.blogspot.com/2009/04/all-about-me.html

I hope that you and your family never, ever have to endure anything that I have and I hope your family remains healthy and happy!

Lots of peace and Love!  I have faith in you as our leader!
- Jayne Armstrong"

  Here is the response that I got back; it's not from the President but from the President's Cancer Panel and it didn't take long for a responce!)  OK maybe its a form letter but it still seems personal and leugit.  I hope they are able to improve the lives of many cancer patients.  Medicinal Cannabis will provide many patients with more time to be with their loved ones and less time being miserable and in pain.

Dear Ms. Armstrong,

Thank you for sharing your testimony with the President's Cancer Panel (the Panel). As you may know, the Panel is a presidentially appointed Federal Advisory Committee established in 1971 with the passage of the National Cancer Act. Each year, the Panel holds public meetings to solicit input from a variety of stakeholders on the state of the National Cancer Program. Testimony is received from both invited speakers and members of the public. This testimony is used to inform the recommendations that the Panel submits to the President in their annual report. The information you have submitted will remain on file.

At this time, the Panel is working on its next report to the President, America’s Demographic and Cultural Transformation: Implications for the Cancer Enterprise, which will be released in January 2011.

The Panel appreciates your testimony and thanks you for your interest.

Best,
Lisa

Lisa Paradis, MPH

Health Communications Fellow

President’s Cancer Panel

National Cancer Institute

(301) 451-7909"

 

I'm so glad that I get to go into this and get all the help that we need our it it and we deserve it.  This is the kind of program where you should be glad that your taxes are going to fund  and that is such a good thing!  Helping someone who is at this stage of a deadly disease; why not help them?  I knew we needed it and to be quite honest we have been on edge for many, many many months.  Both my husband and I will recieve the help we need to make this next journey in life.  Yes, it's a journey and I've decided that so it won't be so hard and scary for me.  I'm still scared but I know I'm going to in another place; hopefully it's just as good if not better than here; I would even mind if I could just haunt the house for a few months or so; I don't know? 

Another think he did that I'm totally stoked about is that he got us out of Iraq!  Isn't that a big deal and it was a promise!  I'm happy that money isn't going there but hopefully going to our country which deserves it; Rich Wealthy People CAN afford to pay taxes just like the rest of us.  Cut the taxes back down for us middle class and poor and increase again for those who really can afford to pay their taxes?  Oh God am I getting politital but I'm happy things are going to get better.   I just know they are!   Yes, they had to get worse in order to get better.  What we had before was a catastrophe of greed  and souless bastards robbing the poor.  Our time here should be about trying to make  things better; make moments better for us all.  Life is about love, friendship, family, and so much more; not about getting  caught up in rumors and lies?

Well some other things that I'm very proud my President has done is that now Kids can now be covered even if they have pre-exisiting conditions!  Education is only going to get better soon if all of us work together on that! There is nothing wrong with educating our future and rightfully so.  I don't feel Educating them with lies as we were done during the Reagan years is all right.  We were lied to about drugs.  Well another thing the president helped pass is that there are a lot more consumer protections against Credit Companies for unfair lending practices and I am one who had really seriously gotten ripped off by some credit card companies and thankfully all of that is over now!)  There are so many crooks out there and now its just a harder for them which is good!

Times won't get better if we listen to the stupid media (it's bought and paid for by corporations),  if we stress  the hell out and make things worse for our selves; what good is that going to do?   Feeling sorry for yourself in dire times will never solve a problem and I know this going through what I am going through.  So many are so quick to blame all of their problems on the President. and that makes me so sick?  He is trying and I feel that he is doing a great job.  I read some great articles on him in Rolling Stone and I'm still proud that he is my President.  He makes me happy and very proud; I know he can do it. I enjoyed my time on the couch relaxing and reading my Rolling Stones magazines! How relaxing that was.

OK now the truth as to what I have been facing this weekend. I have lost some strenght and am somewhat weak.  I can't get up as fast and we are on more pain medications to control extreme abdominal pain.  I have puking quite a bit and having a relentless addiction to pickles. I can't stop eating and puking pickles. That sounds totally sick I know and it's my own faught but I don't know what it is; it's the only food that is working for me right now even though I can't keep it down.  I am having a few tiny little bowel movements like little bunny raisins.  I guess this is happening once a week.  I'm constipated most of the week but at least I'm not suffering too bad.  Yesterday was just a very uncomfortable day of running up and down the stairs; using suppositoties and enemas and it not making much difference except for painful spams in my bottom that also caused violent puke fests at the same time. It was miserable but I got through them and may have another day of this.

Right now we are treating much of the nausea with my Vaporizer, Liquid Dilaudid and crushing 2 Ativans and taking it under the tongue.  This is working some but I'm still having horrible, horrible abdominal pains and nausea.  It's still not completely under control but we hope it will be soon.  My hospice care nurse will be here on Monday to assess. 

Peace and Love to all of you!