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."

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."

Nabilone

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!

Creating Your Own Clinical Trial

I went to my medical oncologist today ostensibly for a checkup but truly armed with determination and new resolve.  I had recently read of and investigated a drug which has worked wonders in arresting the progress of cancer in mice that had been implanted with ovarian cancer cells. 
This drug has been used for years for other purposes namely alcohol and drug addiction as well as been safely and efficiently used in the treatment of Crohn's disease and pancreatic cancer.  Crossover drugs are very common in the cancer business.
The funny thing about this drug is that I'd heard about it several years earlier from a couple whom we'd met on a cruise.  The gentleman was suffering from cancer and was taking this drug in lieu of chemotherapy - much to the dismay of his oncologist - who considered it homeopathic and not a serious cancer treatment protocol.
So, braced with these memories and with the article which was published in a very reputable science journal - I gave the document to my oncologist and said "I'd like a prescription for this".  I said I had done my homework and over and above the claims of "arresting the progress of ovarian cancer" the side effects were negligible other than sleeplessness for the first two weeks; the drug enhanced platinum-based chemotherapy and attenuated (lessened) its side effects. He took my request seriously.  He asked me to wait a while so he could check it out.
He returned saying that he couldn't say no but he couldn't say yes either - explaining that there was enough data to say yes but that unless it came under the heading of a formal clinical trial, he couldn't deviate from the government-regulated, accepted treatment protocols existing for ovarian cancer.  So, if he couldn't prescribe this drug could my GP I asked?  YES, he responded.
To be sure that what I was asking for is really what I wanted to do - knowing that it is to be taken alongside chemo scheduled for tomorrow - I thought that the best thing to do is as my Dad would say "Go right to the top".  So, I called the author of the mouse study.  The doctor's answering machine asked that one email their questions and so I did.  He replied within 10 minutes giving me his sympathies for having the disease, provided the suggested dosage of the drug and enclosed other publications of his which appeared in the most prestigious gynecology/oncology medical journals. I was convinced.
Realizing that this is a very specific drug - something that would not be readily available -  I then called my pharmacy to see if they could compound it.  No, was the answer but they gave me the name of a pharmacist  who would.  I called them and bingo, yes they could.  Details given, they awaited the prescription.
Next, I emailed my GP with the link to all of the publications and my correspondence with the author of the study.  Yes, his office replied, he would write the script.
Lastly, I dug into our old files for the telephone number of the people from the cruise.  I called them to find out what their opinion/experience with this drug was and any other details that they were willing to provide.  The gentleman has been on it for four years and hasn't had a chemo treatment since.
There haven't been any clinical trials that suit my condition so in essence, I've created my own.

Names

On Thursday, we welcomed the newest member to our family - baby Chloe.  She's the first of our clan to be born carrying three passports!  Mommy and baby are both doing well. 
I think that Chloe is a beautiful, strong name with no attachments.  In other words, there isn't anyone or anything that I automatically think of when this name is mentioned.   
So, what if we apply the same principle to the name Cancer?  After all, the word is a catchall that has no specific meaning other than something that spreads quickly and creates its own vascular system.  For most people however, the name causes an immediate reaction of fear and dread.   
How differently would you feel if you visualized something very contained and sluggish.  Better.  How would you feel if instead saying chemotherapy you called it hemotherapy - hemo - meaning blood.  Sounds like a spa treatment doesn't it?
Say, on a particularly "green" day, you remember what you felt like when you were carrying your first child or were comforting a friend or sister who was 8 weeks pregnant - you'd smile at the memory and know that it has a limited time frame.  What about on a day when you feel prickles and tweaks - do you picture the good guys at work or do you have the panicky feeling of "what's that"?
What about remembering that you elected to have a total abdominal hysterectomy for therapeutic reasons instead of doing nothing - and some women make that choice too.  The word elected empowered you.
My GP reminded me that every emotion results in a chemical reaction in your body.  Think of that.  For most people, the term cancer very definitely causes negative emotions and negative associations and so empowers it to create unhealthy chemical reactions. 
We have the power to change names,  re-create associations and meanings.  A big part of our work in life therefore, is changing our emotional reaction to names and to recognizing that they're only words.

Just Because...

Just because it's Sunday, and just because I watched the 1973 film/musical version of Tom Sawyer yesterday and just because it's so darn relevant - here are the lyrics to "If'n I Was God" sung by that adorable, freckle-faced, red-headed Johnny Whitaker complete with tears streaming down his face because Aunt Polly had just slapped him:

If'n I was God
Well, just for spite
I wouldn't set the sun at night
Til everyone was treated right
By everyone else they see

If'n I was God
I'd fix it so without explainin'
Folks would know
They'd know what's goin' on inside
Of everyone else like me

Nobody'd hurt nobody else
I wouldn't let it be
Nobody'd have a need to pray
Except, for thankin' me

If'n I was God
I'd make us wise
So's everyone could realize
That everyone beneath the sun
Everyone needs everyone
And, God, that ain't half what I would do
If'n I were you

Just because - Happy Sunday!

Angels in the Wings

This past week was very busy with blood work, a pre-chemo checkup and two days of chemo...all packed in an unpleasant atmosphere at the cancer clinic which had to accommodate six days of patients into 4 days due to the holidays.  I'm usually a very "patient patient" about tardiness saying to myself that "someone needs the doctor more than I do".  Well, this time I was somewhat depressed and almost resistant about going through with the treatment - let alone cooling my heels for 4 hours for my checkup.  I truly surprised myself in that I've always embraced chemo but this time I felt so well that it seemed unfair.  My CA125 was in line after the first round of treatments in May - this was to be my third time.  Surely I didn't need another two days of infusions - not me!?  Lessons to be learned. 
Every ovarian cancer patient is different and every ovarian cancer patient has a unique "normal" CA125.  Brief recap - the CA125 or tumour marker is a blood test that measures the level of cancer antigen #125 in your blood - an indicator of what's going on inside you.  The "normal" number as described in classic clinical fashion is around 35.  A number less than that is considered very healthy - a doubling of this number usually indicates that the cancer is progressing.  My number is presently 15  but my oncologist and I have decided that my "normal" is around 5.  This is a very arbitrary decision based on the level that I've been able to achieve after each regular course of 4-6 chemo treatments.
To add to my malaise, a very odd thing happened the previous weekend.  I had hosted a baby shower for my niece and was so happy to have all of my sisters and other members of our extended family together for the first time in a year.  After the party, we travelled up to the lake occupying two cottages for several days of levity and good cheer.  One of my sisters devised a flag signalling system for the cottage next door.  The system was to be "half mast - we're not ready for you to come over....full staff - come on over - cocktails are served".  Well, a couple,  who are very good friends and neighbours of ours at the lake, saw the flag at half mast - saw all the cars including licence plates from the USA  - and jumped to a very strange conclusion.  The next morning, they saw me at the beach and both cried  - saying that they thought I had died!  At first we were all too stunned to react other than to laugh but eventually it sunk in.  Can you imagine?
Enter Angel #1.  Wednesday was chemo day 1 and I sat in the waiting room for almost 2 hours beside a lady who probably weighed 85 pounds - was as feisty as could be - said she'd been dealing with ovarian cancer since 2008 and had a CA125 of 11,000.  I said she must have been hiding wings under her T-shirt because she surely couldn't be alive with a number like that.  She went on to say that her husband had left her two months after her original surgery and that she'd been coping on her own since then.
Angel #2.  Thursday was my mega-infusion day - 7 1/2 hours which ended up being 9 hours with all of the patient overflow.  I was once again lucky to have met another ovarian cancer patient who was also on a slow infusion.  We chatted for 5 hours and it seemed like 1.  She had been diagnosed with very advanced ovarian cancer - metastases to the bowel and stomach.  She has had a stent put in her stomach and is living a relatively normal life - except for the severe fatigue from the chemo.  Of all of her surgeries and traumas, her only complaint was missing playing golf.  She also said that she had no idea what her CA125 was and it obviously didn't matter to her.
Angels a-plenty then flew on Friday when I realized that most of my family forgot that it was a chemo week and so I very happily concluded that my educating them - teaching them to accept this disease on a chronic rather than catastrophic basis - is finally part of the new normal.
I was delighted to have connected with two new Sunflower Sisters - share our web info with them and learn things from them which will hopefully help others by incorporating their stories and procedures into the site. Whether you have a CA125 of 15 or 11,000 - there are angels everywhere waiting to help - you just have to be open to seeing them - wings or not.