Today is May 1st - the halfway point between Spring Solstice and Summer Solstice. Today is also known as Beltane in Celtic mythology. It is the celebration of the rebirth of Mother Earth - a time of welcoming the warming of the soil, of new growth and a period of abundance symbolised by green everywhere. It's a period of planning, planting and supporting.
Spring is hope - everything in nature is putting out an incredible effort to be - to reproduce - to ensure continuity. It's not a period of reflection but one of action - of making an effort - of discovery. Having just recently moved, I find myself staring at the flowerbeds wondering what's in there - what will those tiny shoots become?
I too am metamorphising from the dark days (of chemo toxicity) to a crisper awareness of light and energy surrounding me. At today's yoga, we were reminded of where we are in our individual practice and how we can move forward...imbalance is needed to achieve balance.
Some of my fellow practitioners and Sunflower Sisters are in deep physical peril from their disease but they have found the middle ground - the place of serenity and calm - and continue to nurture us through their example.
The expression May Day is a cry for help in Morse parlance. I hear May Day as the trumpeter playing Reveille - a signal that it's time to wake up, get the rake out and sweep up winter's debris.
1 May 2012
25 Apr 2012
First do no harm...
"First do no harm" is the foundation of the Hippocratic oath. It is no doubt what springs to mind when my medical professionals see me coming armed with the latest research and endless questions on drugs and treatments outside of conventional ovarian cancer regimes.
To back-track, I completed 7 rounds of topotecan at the end of the first week of April. The first six rounds were the best chemo experiences I've had to date...no side effects to mention and a life! The 7th round was the straw that broke the camel's back . The dosage was increased throughout the period and the last infusion seemingly saved up all that was possible. The result was toxic. I've been asked by two doctors and several nurses to explain what happened and the best I could come up with was "like being in a black hole with no ability mentally or physically to surface". A friend described a similar circumstance as the feeling of having her soul leave her body and being left with the shell. So, this was not a near-death experience with all the welcoming lights and tunnels - just a death experience. Perhaps hell.
This description, coupled with the word toxic, caused my oncologist to take me off chemo for the time being in order to give my body a chance to rebuild and recover.
The mind is so fickle however, it has no ability to remember actual discomfort or pain - only the knowledge that it happened. So, not being daunted by a mere black hole, I am now pursuing other treatments that could be helpful during this break. Two drugs come to mind - metformin and tamoxifen.
Metformin is a drug which is typically used in the treatment and regulation of type II diabetes. Several papers have been published recently about it's potential use in ovarian cancer progression, survival and chemosensitivity. An article in the Journal of Diabetes - published in February 2011 by Donghui Li, states that "...there is increasing evidence from epidemiological investigations, laboratory studies and translational research that metformin may have a broad activity against cancer." Armed with this and several more recent papers, I prevailed upon my medical oncologist, my general practitioner and my brother-in-law (who is a neuphrologist) to see if it isn't worth trying. The theory is that glucose - which is what the body produces as fuel to live - is also the primary fuel of cancer. If that fuel can be limited and modified the cancer cells will starve or eat each other. Metformin has been recommended for use alone or in combination with cisplatin http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084625/ by the Mayo Clinic. The possible side effects include weight loss and diarrhoea. The three-way verdict is that there is no compelling reason NOT to use metformin.
Secondly, even though my tumour assays have shown that I am not BRCA1 or 2 positive nor HER positive, there is a body of evidence that shows that the hormone suppressing drug tamoxifen can be effective as a maintenance drug in between chemo cycles. The female body continues to produce estrogen even after a total hysterectomy, in the liver, adrenal glands, breasts and fat cells. The possible side effects of tamoxifen include hot flashes, muscle pain and constipation - to name a few. Again, the doctors have agreed to the "no reason why not" theory.
My GP told me an interesting story about how the medical world was ultimately able to respond to HIV/AIDS - turning it into a very treatable, maintainable disease - she said that "they threw everything at it - not just one drug at a time". I too see no reason "why not" - I'm going for it.
To back-track, I completed 7 rounds of topotecan at the end of the first week of April. The first six rounds were the best chemo experiences I've had to date...no side effects to mention and a life! The 7th round was the straw that broke the camel's back . The dosage was increased throughout the period and the last infusion seemingly saved up all that was possible. The result was toxic. I've been asked by two doctors and several nurses to explain what happened and the best I could come up with was "like being in a black hole with no ability mentally or physically to surface". A friend described a similar circumstance as the feeling of having her soul leave her body and being left with the shell. So, this was not a near-death experience with all the welcoming lights and tunnels - just a death experience. Perhaps hell.
This description, coupled with the word toxic, caused my oncologist to take me off chemo for the time being in order to give my body a chance to rebuild and recover.
The mind is so fickle however, it has no ability to remember actual discomfort or pain - only the knowledge that it happened. So, not being daunted by a mere black hole, I am now pursuing other treatments that could be helpful during this break. Two drugs come to mind - metformin and tamoxifen.
Metformin is a drug which is typically used in the treatment and regulation of type II diabetes. Several papers have been published recently about it's potential use in ovarian cancer progression, survival and chemosensitivity. An article in the Journal of Diabetes - published in February 2011 by Donghui Li, states that "...there is increasing evidence from epidemiological investigations, laboratory studies and translational research that metformin may have a broad activity against cancer." Armed with this and several more recent papers, I prevailed upon my medical oncologist, my general practitioner and my brother-in-law (who is a neuphrologist) to see if it isn't worth trying. The theory is that glucose - which is what the body produces as fuel to live - is also the primary fuel of cancer. If that fuel can be limited and modified the cancer cells will starve or eat each other. Metformin has been recommended for use alone or in combination with cisplatin http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084625/ by the Mayo Clinic. The possible side effects include weight loss and diarrhoea. The three-way verdict is that there is no compelling reason NOT to use metformin.
Secondly, even though my tumour assays have shown that I am not BRCA1 or 2 positive nor HER positive, there is a body of evidence that shows that the hormone suppressing drug tamoxifen can be effective as a maintenance drug in between chemo cycles. The female body continues to produce estrogen even after a total hysterectomy, in the liver, adrenal glands, breasts and fat cells. The possible side effects of tamoxifen include hot flashes, muscle pain and constipation - to name a few. Again, the doctors have agreed to the "no reason why not" theory.
My GP told me an interesting story about how the medical world was ultimately able to respond to HIV/AIDS - turning it into a very treatable, maintainable disease - she said that "they threw everything at it - not just one drug at a time". I too see no reason "why not" - I'm going for it.
15 Apr 2012
"This is a marathon, not a race"
These words were spoken to me in reply to a barrage of questions I posed during my very first visit with my new medical oncologist in May 2009. I had been referred to him by my surgeon after a 17 month remission, as it was clear that I was in the throws of my first recurrence and would need a chemo specialist. The words were pointedly meant for me to rearrange my attitude and to leave him to figure out the medicine.
Those words are echoing in my head these days. A marathon - 42.195 kilometres or 26.22 miles or in my case, four years, 7 months and 3 days.
In the OvCa marathon, staying in the game is no different than training for Boston. Once you're through surgery, it's about nutrition, mindset, chemo endurance and plenty of physical and psychological coaching. We both become imbalanced, exhausted and hit the wall. We both feel the agony of defeat - if not from CA125 psychosis - then from the "elites*" whose name underlines the fact that you didn't stand a chance to win to begin with. And it wasn't about winning anyway.
I'm extremely proud to say that my brother-in-law - our webmaster's husband, John - will be wearing bib number 13147 in Monday's 2012 Boston Marathon. John has been on a journey culminating in this event for years. Other than the day he married my beloved sister, it is probably one of the highlights of his life. The barriers to entry were high - not having been a life-long runner - but having enough drive, motivation and focus - to put it on his "over 50" bucket list. I wish John's father had lived to see this day - maybe he'll be there at the finish line. His mother won't ask how it went - she who couldn't think of a second name for her second son.
Well, we care lots. We, who upon discovering that he didn't have a second name, christened him John Elton - after his favourite singer/performer - we care that he runs his heart out - that he feels the rush of the hundreds of thousands of spectators cheering him on - that amongst that throng of voices he'll hear ours sending him wings under his feet - that he feels the thrill of achievement and sweet victory when he finally crosses the finish line.
It's interesting to reflect on the the doctor's cliche manifesting itself in real time in our family. Life is a beautiful metaphor.
GO JOHN ELTON GO!!!
*elites = world class, high performance, highest speed/lowest time runners
Those words are echoing in my head these days. A marathon - 42.195 kilometres or 26.22 miles or in my case, four years, 7 months and 3 days.
In the OvCa marathon, staying in the game is no different than training for Boston. Once you're through surgery, it's about nutrition, mindset, chemo endurance and plenty of physical and psychological coaching. We both become imbalanced, exhausted and hit the wall. We both feel the agony of defeat - if not from CA125 psychosis - then from the "elites*" whose name underlines the fact that you didn't stand a chance to win to begin with. And it wasn't about winning anyway.
I'm extremely proud to say that my brother-in-law - our webmaster's husband, John - will be wearing bib number 13147 in Monday's 2012 Boston Marathon. John has been on a journey culminating in this event for years. Other than the day he married my beloved sister, it is probably one of the highlights of his life. The barriers to entry were high - not having been a life-long runner - but having enough drive, motivation and focus - to put it on his "over 50" bucket list. I wish John's father had lived to see this day - maybe he'll be there at the finish line. His mother won't ask how it went - she who couldn't think of a second name for her second son.
Well, we care lots. We, who upon discovering that he didn't have a second name, christened him John Elton - after his favourite singer/performer - we care that he runs his heart out - that he feels the rush of the hundreds of thousands of spectators cheering him on - that amongst that throng of voices he'll hear ours sending him wings under his feet - that he feels the thrill of achievement and sweet victory when he finally crosses the finish line.
It's interesting to reflect on the the doctor's cliche manifesting itself in real time in our family. Life is a beautiful metaphor.
GO JOHN ELTON GO!!!
*elites = world class, high performance, highest speed/lowest time runners
4 Apr 2012
Cutting Edge
The Inspire.com discussion groups are abuzz with an emerging treatment for difficult-to-reach ovarian cancer tumours called CyberKnife. Contrary to what its name conjures up, it is a robotic radiosurgery system - a non-invasive alternative to conventional surgery. It delivers pinpoint beams of high-dose radiation to tumours with remarkable accuracy. It purports to offer a pain-free option to patients with inoperable or surgically complex tumours with quick recovery time. All of this seems to indicate a better quality of treatment and perhaps lower cost overall.
Many ovarian cancer patients have their disease recur in lymph nodes which are often buried in the abdominal cavity. Disturbing the bowel system to remove lymph nodes by conventional means is rarely done after initial surgery. The usual secondary treatment involves serial chemotherapy.
This alternative offers new hope with no invasion. Removing the source of the cancer - i.e. active nodes - offers potential remission without chemo. Another favourite recurrence site is the liver - the Cyberknife.com site states that "these treatments are usually performed on an outpatient basis in one to five days. Most patients experience minimal to no side effects...". Wow.
This treatment could also be appropriate for patients whose health would not permit conventional surgery - no anaesthesia is involved and it eliminates the risk of hemorrhage and infection. It could also be an option for patients who refuse surgery. Of course, this technique is not a panacea for deeply embedded or inaccessible tumours.
CyberKnife has been around for years but is only recently being offered more aggressively to ovarian cancer patients.
A similar but different technique is called Gamma Knife - http://www.gamma-knife-surgery.com/. According to their website, this treatment is recommended for brain lesions which do exist in ovarian cancer patient metastases, however, rarely.
Recent news has also covered successes of cryoblation - a technique of freezing cancerous tumours through injection. This procedure has migrated from other types of cancer treatment such as prostate cancer. It is now being offered as an alternative and/or adjunctive treatment to chemotherapy for recurrent OvCa in accessible tumours.
A great number of mainline chemotherapies for ovarian cancer originated after successes with the more prevalent cancers. It's interesting to note that non-invasive treatment techniques are heading in the same direction.
Many ovarian cancer patients have their disease recur in lymph nodes which are often buried in the abdominal cavity. Disturbing the bowel system to remove lymph nodes by conventional means is rarely done after initial surgery. The usual secondary treatment involves serial chemotherapy.
This alternative offers new hope with no invasion. Removing the source of the cancer - i.e. active nodes - offers potential remission without chemo. Another favourite recurrence site is the liver - the Cyberknife.com site states that "these treatments are usually performed on an outpatient basis in one to five days. Most patients experience minimal to no side effects...". Wow.
This treatment could also be appropriate for patients whose health would not permit conventional surgery - no anaesthesia is involved and it eliminates the risk of hemorrhage and infection. It could also be an option for patients who refuse surgery. Of course, this technique is not a panacea for deeply embedded or inaccessible tumours.
CyberKnife has been around for years but is only recently being offered more aggressively to ovarian cancer patients.
A similar but different technique is called Gamma Knife - http://www.gamma-knife-surgery.com/. According to their website, this treatment is recommended for brain lesions which do exist in ovarian cancer patient metastases, however, rarely.
Recent news has also covered successes of cryoblation - a technique of freezing cancerous tumours through injection. This procedure has migrated from other types of cancer treatment such as prostate cancer. It is now being offered as an alternative and/or adjunctive treatment to chemotherapy for recurrent OvCa in accessible tumours.
A great number of mainline chemotherapies for ovarian cancer originated after successes with the more prevalent cancers. It's interesting to note that non-invasive treatment techniques are heading in the same direction.
2 Apr 2012
"Light It Up Blue" for Autism Awareness
Autism is symbolised by a puzzle piece - very appropriate for a condition - or more accurately - a spectrum of conditions which have no known cause and no cure. Furthermore, autism is considered an epidemic in the United States as it has increased tenfold in the last forty years. Now, one in 88 children is affected somewhere on the spectrum of the disorder from high-functioning to non-verbal with severe physical complications. Strangely it effects 1 in 54 boys and 1 in 252 girls. The prevalence among boys remains a mystery.
I read an article in the NY Times on the weekend which said that autism can now be diagnosed in infants as early as 6 months old with a CT scan. The changes in the brain have been studied and are now identifiable. Early detection is obviously a help in providing parents and caregivers with the knowledge and tools to cope. Autism isn't a sentence - there are many, many things that can be done to help children learn and function well into adulthood.
Extreme controversy remains about the role of certain childhood vaccinations in triggering autism.
A high-functioning PhD with Asperger Syndrome (another developmental disorder on the spectrum) claims that autism - no matter where you are on the spectrum - is not a disease, just different.
For more information on the subject, here are some great web links:
- http://www.autismspeaks.org/
- http://www.barberinstitute.org/autismINsight/autismAwareness.php
- http://www.cnaf.net/
- http://www.autismsocietycanada.ca/index.php?option=com_content&view=article&id=68&Itemid=138&lang=en
31 Mar 2012
Creating Your Own Spa
Chemotherapy not only creates havoc internally but is really punishing to your skin. Being the largest organ of your body, it stands to reason that it too would suffer. The problems include dehydration, discolouration, sensitivity to sunlight, infections, difficulty healing and rashes to name a few.
Some people suffer from chronic skin conditions which chemotherapy often exacerbates. Sadly and painfully, due to adverse reactions and complications, these patients are usually denied any skin condition meds while undergoing chemo.
There now exist spas which have specially trained clinicians to treat cancer patients. This is truly remarkable however, there is a lot a patient can do at home to create their own spa experience and improve their overall skin condition.
A spa considers most of the senses starting with pristinely clean linens, scent and soft music. In choosing the scent - or aromatherapy - try sweet orange or grapefruit - they are known to reduce nausea. Put one drop of either essential oil in enough warm water to soak ten facecloths.
Cleansing is the first step to babying your skin. Set up a comfy chair in your bathroom and begin placing the warm scented cloths on your face, neck and chest, changing them as they cool. Use half of them for this stage.
Step two usually involves exfoliation. Depending on how tender or damaged your skin is, you should exercise extreme care. One of nature's greatest, most natural exfoliants is raw honey. It is not only a topical antiseptic, it has anti-viral, anti-bacterial and anti-fungal qualities. It's packed full of antioxidants and has been shown to reduce inflammation. A perfect food.
Gently massage the honey all over your face, neck and chest area - if you have a port, take care not to come near it with products.
Remove the honey with the remaining set of impeccably clean, warm facecloths.
This leads to an interesting step - pat the entire area with warm, diluted green tea - use a ratio of about 10:1. Yes tea. It's a powerful antioxidant and the skin is extremely porous and absorbent.
As a final step, moisturise with a Vitamin C serum.
Ahhhhhhhhhh, nice.
But you're not finished...
Put yourself to bed for a half hour - but prepare it first. Use lots of pillows to raise your legs above your heart level, dot the pillows with a scent which will soothe and restore. The smell receptors in your nose are said to trigger chemical messages along nerve pathways to the brain's limbic system which affects your moods and emotions. Tried and true essential oils include: chamomile, geranium, lavender, tea tree, bergamot and cedarwood. Turn on some relaxing music. You may also want to place a warm, tea-soaked cloth over your eyes.
A word to women experiencing menopausal symptoms such as hot flashes, substitute "cool" for "warm" throughout the treatment.
Enjoy...
Some people suffer from chronic skin conditions which chemotherapy often exacerbates. Sadly and painfully, due to adverse reactions and complications, these patients are usually denied any skin condition meds while undergoing chemo.
There now exist spas which have specially trained clinicians to treat cancer patients. This is truly remarkable however, there is a lot a patient can do at home to create their own spa experience and improve their overall skin condition.
A spa considers most of the senses starting with pristinely clean linens, scent and soft music. In choosing the scent - or aromatherapy - try sweet orange or grapefruit - they are known to reduce nausea. Put one drop of either essential oil in enough warm water to soak ten facecloths.
Cleansing is the first step to babying your skin. Set up a comfy chair in your bathroom and begin placing the warm scented cloths on your face, neck and chest, changing them as they cool. Use half of them for this stage.
Step two usually involves exfoliation. Depending on how tender or damaged your skin is, you should exercise extreme care. One of nature's greatest, most natural exfoliants is raw honey. It is not only a topical antiseptic, it has anti-viral, anti-bacterial and anti-fungal qualities. It's packed full of antioxidants and has been shown to reduce inflammation. A perfect food.
Gently massage the honey all over your face, neck and chest area - if you have a port, take care not to come near it with products.
Remove the honey with the remaining set of impeccably clean, warm facecloths.
This leads to an interesting step - pat the entire area with warm, diluted green tea - use a ratio of about 10:1. Yes tea. It's a powerful antioxidant and the skin is extremely porous and absorbent.
As a final step, moisturise with a Vitamin C serum.
Ahhhhhhhhhh, nice.
But you're not finished...
Put yourself to bed for a half hour - but prepare it first. Use lots of pillows to raise your legs above your heart level, dot the pillows with a scent which will soothe and restore. The smell receptors in your nose are said to trigger chemical messages along nerve pathways to the brain's limbic system which affects your moods and emotions. Tried and true essential oils include: chamomile, geranium, lavender, tea tree, bergamot and cedarwood. Turn on some relaxing music. You may also want to place a warm, tea-soaked cloth over your eyes.
A word to women experiencing menopausal symptoms such as hot flashes, substitute "cool" for "warm" throughout the treatment.
Enjoy...
25 Mar 2012
Smarty Pants
Just when you confidently think you have enough experience to go through another CT scan with ease, they throw you a curve.
At 10:00am this past Thursday, I had what was probably my 12th CT scan in four years. I was told to fast beforehand - that's nothing new - but what makes that instruction difficult is that I am an early riser and always hungry in the morning. Never mind, it was only for a few hours.
Upon arriving at the hospital, they gave me contrast liquid to drink - a litre plus of foul tasting fluid that they flavour with crystals of some sort. Having had the orange and peach flavour on previous occasions, I boldly asked that no flavouring be put in it - just give me the old-fashioned chemical tasting cocktail. Surprised, they accommodated my request and it went down a lot easier than the flavoured versions...albeit still nauseatingly bad.
After an hour of sipping, they inserted an IV into my arm which transports the dye into your veins, which in turn illuminates the contrast liquid now efficiently flowing throughout your entire body.
Next I was placed comfortably on a gurney which is attached to the CT scanner. This gurney can go up, down, in and out of the machine by remote control. The machine instructs you to "breathe" and "hold your breath" while it takes the pictures. You must be calm. You must be still. So, as the technician was setting me up, I was letting my meditation mantra float through my mind and was perfectly at peace. She left the room and the machine took over.
Then, unexpectedly, the technician reappeared and said she had a surprise for me. Disturbed from my serene state, I opened my eyes and there she was with a cup and a spoon in her hand telling me that I was now - after all of that putrid contrast fluid - going to be asked to ingest a cup of "barium pudding"! What?? Barium pudding. O.M.G. OK. It is a new offering supposed to light up the inside of your esophagal/stomach area. The only thing I knew about barium was when it was injected in the "other end". She said - you've never had a CT scan at this hospital before and as we're part of the University, a teaching hospital, we're more thorough.
So gaggingly, I got it down. As for taste, imagine a chemical-tasting chalk mixed with a cheap, commercial vanilla pudding. Needless to say, the mantra had to be switched into high gear as I concentrated on not up-chucking the paste.
The CT scan got done. I await the results next week. I've been reminded that when you least expect it, life throws you a curve. Just desserts.
At 10:00am this past Thursday, I had what was probably my 12th CT scan in four years. I was told to fast beforehand - that's nothing new - but what makes that instruction difficult is that I am an early riser and always hungry in the morning. Never mind, it was only for a few hours.
Upon arriving at the hospital, they gave me contrast liquid to drink - a litre plus of foul tasting fluid that they flavour with crystals of some sort. Having had the orange and peach flavour on previous occasions, I boldly asked that no flavouring be put in it - just give me the old-fashioned chemical tasting cocktail. Surprised, they accommodated my request and it went down a lot easier than the flavoured versions...albeit still nauseatingly bad.
After an hour of sipping, they inserted an IV into my arm which transports the dye into your veins, which in turn illuminates the contrast liquid now efficiently flowing throughout your entire body.
Next I was placed comfortably on a gurney which is attached to the CT scanner. This gurney can go up, down, in and out of the machine by remote control. The machine instructs you to "breathe" and "hold your breath" while it takes the pictures. You must be calm. You must be still. So, as the technician was setting me up, I was letting my meditation mantra float through my mind and was perfectly at peace. She left the room and the machine took over.
Then, unexpectedly, the technician reappeared and said she had a surprise for me. Disturbed from my serene state, I opened my eyes and there she was with a cup and a spoon in her hand telling me that I was now - after all of that putrid contrast fluid - going to be asked to ingest a cup of "barium pudding"! What?? Barium pudding. O.M.G. OK. It is a new offering supposed to light up the inside of your esophagal/stomach area. The only thing I knew about barium was when it was injected in the "other end". She said - you've never had a CT scan at this hospital before and as we're part of the University, a teaching hospital, we're more thorough.
So gaggingly, I got it down. As for taste, imagine a chemical-tasting chalk mixed with a cheap, commercial vanilla pudding. Needless to say, the mantra had to be switched into high gear as I concentrated on not up-chucking the paste.
The CT scan got done. I await the results next week. I've been reminded that when you least expect it, life throws you a curve. Just desserts.
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