A Lesson for all of us...Listen to the Future...

A friend of mine from High School and also on Facebook sent me this compelling video of a child who really is ahead in her years of wisdom. She tells it like it is "Stop being greedy and think about the future". I think this all the time and am trying in my own little ways of recycling, riding my bike, composting waste in my house, conserving water, changing out my light bulbs and whatever I can do.

Each day is a new day to try something else and to make important choices which can affect the future. If we can all work together and make our own effort, maybe we can achieve these dreams. We don't need to waste more than we use. That's how we got in trouble in the first place. You can't take all those valuables with you when you die. Really what is most important and what are our priorities in life?



UPDATE ON CHEMO

I also got to speak with my chemo oncologist / doctor about not wanting to continue this treatment. He asked if I could give it another chance so that we could see a true trend (if the CA125 (tumor marker which measures the Ovarian Cancer Protein) rises or falls. We need a pattern. Right now we have two. If it goes up 4 points then this called doubling and is a significant factor if this continues and then becomes an 8, then 16 and so on. Cancer patterns usually double at any rate if the cancer is growing. We will see and prayers are being said that the next CA125 will be lower. This is what I have been told in this whole fight and understanding the results of my blood counts.

I have to go pick up my chemo (horse pills=Etoposide) tonight or tomorrow. I have a blood test on Monday and Chemo (intravenous= Avastin) on Tuesday. Oh boy and then I start work on December 2nd.

Phrase to meditate on: "For those whom are always courteous and respectful of elders, four things increase: life, beauty, happiness and strength."
The Buddha

Living in the now in NO Pain.....

A very good friend of mine took this photo of me on Saturday. The blanket here was made by some wonderful ladies from the Breast Cancer Support Forum on Breast Cancer.org. Each square was made by a cancer survivor in the US and then sent to one centrally located breast cancer survivor who knitted all of the loving squares together. I plan to write about this wonderful group of ladies in my upcoming Good Kharma Newsletter due out September 21st.

Granted despite the devastating Cancer diagnosis I am cursed with, I do have plenty to be happy about. I'm very happy to be alive and I have lots of caring friends and family who also give me plenty to smile and/or laugh about. The love from my husband also gives me plenty to smile about.

My scars don't really look so bad and its quite hard to believe that I have been cut open 4 times in the same exact spot. This is why we know that our Oncologist really does care. He cared enough to sew me back up the same way each time I had to be opened up. Despite all of this, can you believe that I still find the times to laugh and I have plenty to laugh about.

In this battle for my life, my husband and I still struggle with my intestines still unable to digest even simple food without the roaring sound of pain.

I ordered these Protein shakes which don't really taste all that good until I'm quite stoned. Then my mouth is dry and I'm very hungry (enough to drink them). They have vitamins that my body needs to heal me and to get what it needs to survive.

Just recently, I have tried to eat food a few times and it does cause me great pain, but nothing that a little hash can't alleviate and that's the magic. Sure my stomach still roars and causes me great pain, however the hash is still working strong and helping to eliminate that horrible pain. Sometimes it even calms down all the noise in my intestines to the point that they are not struggling as much. The pain does eventually return and I have to deal with it each time, but those moments of being pain free help me to fully function; it gives me that quality of life that I so need.

So far I have gained 3 lbs in just a few days. We are scheduled to meet with my oncologist on Wednesday at noon to discuss the next plan of action.

Should we just cut to the chase and have a colostomy bag inserted so that I don't have to worry so much about my bowels and intestines actually working. What next for chemo? Do we continue, was it a mistake that there were NO refills on the Etoposide? Perhaps another chemo plan of action? I would be lying if I said I wasn't nervous about the meeting and I often am. I am really scared of how much time I have and I don't want to know, I just want to continue to live in the now and believe in my heart that I will heal eventually or perhaps even be cured.

To Continue the Chemo.....internal bleeding..

I got a phone call yesterday evening concerning a stool sample I had submitted about 2 weeks ago. It is positive for blood which means that I do have some internal bleeding going on somewhere in.

Much of what I write about in this journey of cancer is all true and to the point and may contain more information than one would want to read about. In all, I only hope that anyone reading any of this, that you are able to look at your life much differently than before and that perhaps you won't sweat the small things in your life like paying bills, going to work, handling specific projects or what ever is going on in your life. Each and every day for me is a battle of combating severe pain. I do my very best each and every day and that's pretty much all I can do at this point. Quality of life is key.

I just hope in all that my life does matter and that I am able to affect one's life in a very positive way. We all need to find a happiness and to not feel stressful all the time. We don't need to cause stress to someone else's life. What a miserable feeling! I almost get a high off of making someone else laugh. My happiness in my life is my loving husband.

So Now back to my stool sample.

What an adventure that was to get! I got the kit the same day that I went in for my blood sample just prior to my first chemo for this set of treatments. The kit for my shit came in a little pouch where you fold out what looks like one of those sanitary doilies that you put on a toilet seat so you don't have your ass touch where someone else's ass has been. The only difference being that you have to lift the lid, fold out the paper so that you can poo on the paper without it being contaminated by the water or your pee. Place the lid on top of the paper and "shoots away"! At the time, that I had been advised to get a stool sample, I did notice my poo as being black in color. This is indication of internal bleeding.

It took me about 5 days to try and get that one sample. Day 1, I was constipated and nothing was coming out. Day 2, I doubled up on the stool Softeners, Miralax, and the suppositories. and finally, I got the stool sample kit, instructions read, paper folded out to make a clean catch or so I thought. It seriously took some work to accomplish all of that. I wasn't prepared for the heavy weight of the poo. The poo hit the paper and as I struggled with the spoon that comes in a little bottle for which I had a difficult time finding inside the cap. The bottle clearly stated to not open the cap, but the spoon was on the outside of the lid. I just had the tiny spoon in hand ready to make a clean catch as I watched in horror as my poo did a gymnastic move on the paper and then it lost its balance on the very edge of the paper and then it plopped into the toilet with the rest of my pee. It was now contaminated and so I needed to wait until I could get another sample. Day 3 and 4 didn't work, but finally on Day 5 I got my opportunity. I pooed, it plopped perfect on the paper and I was ready before it did the gymnastic move into the toilet! I followed the directions, gathered my little sample, packaged it up and place it in the mail.

I just got the results for which my poop was positive for blood. This means that I have some internal bleeding going on which does make sense for all the pain I am suffering, but no worries, its nothing pot can't fix.

My Primary Doctor told me that I will require a colonoscopy. I don't have too many bad memories of those and have had 2 or 3 in the past 5 years and 9 months (11/15/02). I do know that they give you a drug that makes your memory of the whole experience of having a camera guided up your ass.

Now for the Internal Bleeding we are concerned if I should continue with the Etoposide. I have yet to get it refilled. I do plan to talk with my Chemo doctor tomorrow to find out if he thinks it is safe for me to continue on the Etoposide knowing that I have some internal bleeding.

I go through a tremendous amount of pain each day in my intestines despite the diet I am on. It seems everything is a struggle to digest even those boring, gross PediaSures, but just found out that I got the wrong stuff and that's why I am still loosing some weight. I finally reached 125 lbs today and am in dire need of gaining weight. With my frame, I look much healthier when I'm above 130lbs. I can see the bones in my spine and my rib cage.

I haven't received my other chemo pills (Etoposide) and it could be due to the blood in my stool sample. I won't know until I speak with my chemo doctor if I will be able to continue on the Etoposide chemo treatments. I did wait at the Pharmacy for over 2 hours for them to tell me that they can't get in touch with my chemo doctor and therefore I can't get any chemo pills. It could be a good thing to not get the chemo pills because perhaps they are the source of my internal bleeding and sudden weight loss.

Documenting another journey...

I had my CAT scan two weeks ago this coming Monday and I still have a large bruise on my arm from that experiences. The dye which enabled those professions to see the banana flavored Barium that I had drank minutes before the CAT scan was very large compared to the butterfly sized needed that I often request for the many tests. The nurse couldn't seem to find a good vein so she had to prick me and dig around and it was painful but not the type of pain that I am used to on a daily basis.

It has gotten to the point that I have to face reality and that is not being able to digest regular food. Its now time for me to just stick with basics and consume yucky baby food. The cool thing is, I have so many good friends that are my family. I have one neighbor who is an excellent cook willing to bring me puree fresh food daily if required to do so, I also have another good friend who is the most amazing photographer I have ever met. The point is, I have so many great friends who are ready to do what ever it takes just to help me or just to be there for support. I love that I touch lives like that.

To get back to my next journey, I plan to meet with a Chemo doctor on Wednesday with my husband at my side holding my hand as we talk about the unknown. My oncologist seems to think that the drug Etoposide or VP-16. There are lots of possible side effects to this drug and almost assuredly my hair will fall out. I decided that I will document the whole experience and will update on my appointment on Wednesday and what we will decide. I have to do something soon since the tumors are still growing. There are about 3 tumors in my peritoneal cavity and pushing against my intestines. I have another tumor growing inside my right lung. It's scary that it has come to this being 14 months of no chemo. It was nice to have the break but another journey will start.

Not to worry, I will continue to live on. My husband and I are planning to see the Scorpions tonight and I've just been invited to get a pedicure in a few hours. Life goes on and I plan to celebrate it despite the pain I'm in.

For me, the miracle of cannabis does just that and it provides me with pain relief without constipation, no bad tastes in my mouth, and it forces me to drink more water.