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!

Mystery Illness Continues....

We had a long night last night even though my temperature did get down to normal, I still woke up in a pool of sweat (my sheets were soaking wet). I still felt incredibly groggy and did not feel at all like getting up, taking a shower and getting ready for work. My head was pounding and I didn't get to check my temperature, but I did get to email my boss and hoping I would feel better to go to work in a few more hours. Then when it was time to wake up, I still felt groggy and dizzy; so I took my temperature (forgot to photograph it) but it was a low grade fever of 99.6; my stomach (same spot where I had a tumor implant removed in 2005) just burned in pain. It's a very sharp pain as I if I could have pulled a muscle or maybe its a hernia?

Sorry if any of you just had lunch or if you happen to be eating. In September 2005, I had a tumor implant removed here and after about 2 weeks (actually it was more like a month) this gaping hole just happened and it really burned like it was infected. We did everything we could to take care of it. What a gaping hole huh?


It's come a long way since then; you can hardly recognize that same spot. I do feel some strange sharp pains in this exact spot and it doesn't even appear to look likes it even causing me any problems.

Go ahead laugh at the PJs; they belong to my husband. I like to wear his clothes sometimes when I'm sick and home alone. It just makes me feel much better and like he's right there with me taking care of me.

To be completely honest, I have been having moments of pain that just feel as if my guts are going to spew out of this somewhat of a gaping hole (only its not a gaping hole right now). OK, I do know that does not sound very pleasant. This is just the reality that many of us cancer patients sometimes have to face. We sometimes live horror movie lifestyles in having to deal with this stupid cancer. I prefer to watch comedies most of the time; as you can tell I have seen my share of horror. Check it out when I first got the surgery and check it our now.

NOTE: The teal circle is where the implant was removed and also used to be a gaping hole. Now my stomach is not at all swollen, I just have soreness and it hurts like crazy to get up out of a chair.

We will see tomorrow what's the root of this pain. I plan to see my doctor tomorrow afternoon at 3:30pm and will hopefully be able to update you all on what is going on. I have been taking Motrin, Tylenol Cold & Flu (OK maybe that's not the best for me, but dog gone it, it knocks me out and makes me sleep it off) and I just started chewing on some cannabis buds which really helped to relax me; it sure forced me to drink lots of water; plus I did after all go to the bathroom (#2) more than 5-6 times through out the day, so everything is flowing through. That is really a good thing; actually its quite the miracle!) I'm happy for that.

Oh I also did my saltwater flush (1st thing in the morning each and every morning) which is working pretty much everyday. I still take the Miralax only with Blueberry juice. I had to switch the Prune Juice since the Salt Water Flush is really working out well for me.

For me, everyday is a new day to just try my best and sometimes obstacles like these stupid colds just happen. Sometimes pains will happen that end up scaring the crap out of us. It's more or less a wake-up call. Sometimes a good deep breath, close my eyes, hold it in and just think of my cute husband, my cute dog, my cute cat and all my cute friends and family will work to get rid of at least some of the pain. I really do have such a fond appreciation for all of those who are thinking of little old me and wishing me the very best. - thank you!)

Sure many of us are very involved in our lives (that's exactly what we are supposed to do;o) and I just pray that most of us are having happy lives; mines still happy don't get me wrong, but I have to go through these little battles every so often in order to get better a long the way; and perhaps this one will make me stronger. Is a cure just around the corner? I sure hope so!)

UPDATE: 9:35pm PST: Here unfortunately is my just recorded temperature. I was just having some chills and feeling quite dizzy. Uggghhhh, I thought I was getting over this, now I have a high fever again. I'm still alive and my loving husband will be taking good care of me. I guess there goes going to work tomorrow! I don't wish to get any of my friends sick! I mean that from bottom of my heart!)

I could barely get up off the couch to go to bed because of the pain in that same spot (tumor implant). I started a crazy coughing madness that really ached that part of my abdomen and of course my temperature just kept rising.

We nearly went to the emergency room last night because of the pain I was in. It was a very close call; we were so close when all of a sudden my hard headedness sunk in. I kept imagining being in the hospital for several weeks and not being allowed to leave. Instantly I just started bawling and tears just rained out of my eyes (I'm going to the see the doctor tomorrow anyway:). I just didn't want to give up and perhaps get an even bigger super bug than this one. I really hate being in the hospital and I finally just put my foot down. I cried protesting going and just curled up in the bed to try and forget the pain I was feeling.


I couldn't go to the hospital unless I was really dying and I didn't exactly feel that way. These coughing fits I was having literally felt as if I had ripped something inside of me each time I coughed. My husband got some cold compresses and just tried to get my temperature down. I just had a sheet and we finally got it down to 100.2 prior to me konking out.
When I finally konked out, I was able to sleep peacefully through out the rest of the night.

CA 125 slowing going down.....

Only 1 more chemo pill for this round as I just took one of those horse pills. It always comes down to the countdown of the icky pills. Those Etoposide pills with the horrible side effects. They certainly make my stomach feel queezy, painful, and kind of crampy.

I have had to cut down on eating regular food and I actually found some Ensures that are quite tasty and were on sale across the street at Safeway. They are the Butter Pecan and the Coffee Cream. I imagine I will grow tired of them soon but can at least enjoy them right now.

On Election Day, Tuesday, November 4th at 9am I have my Avastin chemo infusion. It seems I always end up getting chemo scheduled at crazy days and times. I remember my very first chemo ever. The nurse was so cold and calloused that she tried to convince me to come in on Thanksgiving day for my very first treatments of Taxol and Carboplatinum. Who wants to vomit their turkey dinner on Thanksgiving? Wells she had some openings so why not take advantage right? Wrong. I delayed that first chemo treatment until December 5th, 2002, I had gotten married on December 3rd, 2002. Hard to believe I have survived so much in 6 years.

Now some Good News! My CA125 came in the mail yesterday and I had taken a whole month off the Etoposide pills prior to this blood test. Prior to the 1 month off, my count was at 27. Without the Etoposide is now down to 24. Prior to the 27 count, it was at 35, and before we started Chemo, it was at 79. We just need it to go down another 20 points would be great, but every few points is a blessing. I am just thankful for everyday I am given because I see each day what a miracle life is. I watched women in support groups where we would loose at least one woman a week or two weeks. It got to me as I grew attached to these woman and it was just a stark reminder of just how deadly this disease really is.

Sometimes when my stomach is going crazy, I get scared and worry that with all the noise that what if something in there just explodes and it kills me. I try not to think like this, but I can't help it sometimes when the pain is so intense and the noises from my stomach are so loud. It really does get intense and scary. The cannabis helps me through these types of ordeals.

I did receive news that on Friday the rain will come! I realize that yes it will be on Halloween but they are expecting some snow fall in the Sierra's so we can just hope that there is enough snowfall to cover the rocks and to make a nice base for the coming months if only we get lots of storms to enjoy.



Stumble It!

So is there really a cure for cancer?

I found out about a substance which is found inside the seeds of many fruits which contain a very important vitamin for our diet, Vitamin B17 "in its purified form developed for cancer therapy, it is known as Laetrile" and here is info on that. Now I do plan to try this out for myself and have already ordered it. Since it is technically syanide, I plan to use extreme caution. I will be writing an article for a future Good Kharma Newsletter about all that I am experiencing, taking it each day and I live and experience each, one day at a time, what I am feeling, results of my PET/CT scans and much more. I'm hard headed and I have to experience things myself. People tell me things all the time and I usually don't believe everything I hear because of my hard hardheadedness.

This will be the essence of true true journalism in its purest form of honesty, how it was meant to be because I will be writing this; me, a cancer patient, with advanced Ovarian Cancer who is also refusing further treatment (for right now-never say never), will try this vitamin/compound. This will be about my first hand experience with this compound and of course what it is like to live with cancer. I hope it does works for me and I will be able to write about this experience in a positive way that proves whether there really is a cure.

I just want a cure and I want so many others who do not deserve to die young or old from this horrid disease. I have gone to too, too many funerals for this disease. I went to support groups and lost a large number of awesome great women to this disease. This disease and many others that claim the lives of millions is the true terrorism we face; its corporate greed which has put money ahead of lives.

I sincerely hope this isn't the truth but I did find this website which I will research further. QuackWatch is a site that I recently found which dismisses many claims of miracle cures. Despite its findings, I will continue to update on my own personal experiement. It would be very, very cool if it did.

I included all 6 videos from YouTube about this supposed cure so that you could judge for yourself. Below is the information about those short films in its entirety.

What you are about to watch does not carry the approval of organized medicine. The Food and Drug Administration, the American Cancer Society, and the American Medical Association have labeled it "fraud" and "quackery". In fact, the FDA and other agencies of government have used every means at their disposal to prevent this story from being told. They have arrested citizens for holding public meetings to tell others of their convictions on this subject. They have confiscated films and books. They even have prosecuted doctors who apply these theories in the effort to save the lives of their own patients.

The purpose of this movie is to show that this great human tragedy can be stopped now entirely on the basis of existing scientific knowledge. The information you are about to watch marshals the evidence that cancer is a nutritional-deficiency disease, like scurvy or pellagra. It is not caused by a bacterium, virus or mysterious toxin, but by the absence of a substance that modern man has removed from his diet. That substance is Vitamin B-17, also known as Amygdalin or Laetrile. If that analysis is correct, then the treatment and prevention of cancer can be made simple. All that needs to be done is to restore that easily obtained and inexpensive food factor to our daily meals. An increasing number of doctors all over the world are now are testing and proving in their own clinics that the vitamin concept of cancer is true.


















I plan to research this further and have found many websites that support this theory. In all I know for a fact that it can't be any more dangerous than the chemo that I have already put inside my body which has caused hair loss, severe pain, nausea, and has nearly killed me several times causing my intestines to become ruptured, surviving Paritonitus (which actually killed more cancer cells than the actual chemo did).