29 Aug 2011

Beer and Licorice

Our website is now nine months old - a fitting number to celebrate of the arrival of yet another addition to our family this year - another "pink" one...Welcome to the world, baby Lailah!
When my sister and I created SunflowerSisters, our intention was simply to try to help ovarian cancer patients live more fully with and inspite of their disease. We've been able to track, through a Google Analytics application, statistics indicating that to date, we've had almost 2,000 visitors to the site from 37 different countries. We have the ability to fine tune these statistics to differentiate the real visitors from the accidental - i.e. the ability to identify users who have read several pages and stayed on the site for more than one or two seconds. We can track how a person finds the site - do they use a keyword search, if so, what is the keyword and then that information gives us a clue as to what subjects are important to our readers. But, with all of this intelligence, we were never sure that we were reaching our intended audience...until recently.
We received a most moving letter from an OVCa patient who, after repeated recurrences, had taken our website page on Palliative Care to her doctor and had "the talk". By "the talk" I mean the end-of-life discussion - the decision to cease treatment - the planning of the final stage of this earthly journey. We were deeply taken with the calm, serenity and acceptance underlying her words but above all, profoundly grateful for her thanks to us for the help the site had provided. At last, we had the most humbling realization that the work had reached a SunflowerSister and was indeed worthwhile.
I thought of her every day imagining how the disease must have finally overtaken her and wondering at the courage required for her to come to that conclusion.
AND THEN...two weeks later, I received another email from her telling us that incredibly, her latest CT scan showed no metastasization to any vital organs, that the cancer was contained in her abdomen and that it was indeed possible for her to resume treatment! She said that she cried like a baby - well, we did too with that most remarkable news. So, tear up the bucket list and forget the going-away party!
Was it her acceptance? Was it her complete letting go? Was it simply her decision to live with the dis-ease of the disease? Whatever or whoever the reason, she is, no doubt re-born.
As a post script - after her initial contact with us, I had replied to her with a whole string of questions about her journey including asking if she had any specific dietary regimes to recommend...her answer was - "drink a beer and have a couple of red Twizzlers (licorice sticks) every night."

28 Aug 2011

Followup - Creating Your Own Clinical Trial/Nabilone

As discussed in my blog  Creating Your Own Clinical Trial, I have been taking  low dose naltrexone - LDN - for one month now and can report few side-effects other than sleeplessness for the first two weeks accompanied by a very "jittery" feeling which is only now starting to subside.  My oncologist is following these with me.  And, as a result of a flattening in my CA125 (at a very low number) he has decided that I've had enough chemo and given me a "time off for good behaviour".  Yeah!
In the meantime, it is our hope that the LDN will help strengthen my immune system and help keep me away from chemo for while.  I'm back to juicing, taking supplements, increasing daily exercise and of course, practising meditation twice a day. 
It feels great to be in a pro-active mode rather than defensive.

Also, as a followup to the Nabilone blog (medical marijuana) my doctor laughed when I reported the effect that it had on me and said "I told you so...only the young kids like it."

7 Aug 2011


Nabilone - sounds like the shellfish from the Pacific - you know the ones you see on the National Geographic channel where the seals crack them on their chest? Well it's not. It's a synthetic cannibinoid which mimics the main ingredients in cannabis. So, simply put - medical marijuana.
Following all of my latest rounds of chemo, I have developed a nasty case of lingering nausea - a constant state of green which lasts for days and days. As Kermit the Frog sings "It's not easy being green" - it surely isn't and so I have been after my medical oncologist and pharmacist for solutions. I now have 5 different antiemetics (antinausea drugs) which I am told I can take separately or all together as each one affects a different part of the brain. Who knew there were so many areas in the brain which harboured the ability to make you green and who knew it was the responsibility of the brain anyway and not the stomach as we all assumed?
I initially took the "tried and true" ondansetron successfully but when that failed, we added four others to the list. Finally, I was prescribed nabilone.
Certain that it would be the med to put me back in the "pink of things", I popped the tiny pill last Saturday along with the regularly prescribed drugs. It took about 20 minutes to kick in and then, luckily, I wasn't far from my bed. Dizzy, tingling, sparkly, dazed, thick, heavy, spinning, even more nauseous - not happy - not high - not nice. All of that and more as the effects lasted for about 14 hours. Imagine having the flu and then something making you drunk on top of it - not a pretty picture.
I'm taking it off my bucket list - been there, done it now.
As a funny post script - before sending this I hit "spell check" and as you know, it comes back with recommendations. The system highlighted nabalone which I had originally misspelled and one of the suggestions it offered was baloney!