THE DREADED BIG "C"

Three years ago today my life was forever changed with a phone call saying I had “Cancer”. I will NEVER forget this day or all the support and love that my family and friends provided during my journey. The doctors, nurses and fellow cancer patients I met and have bonded with has been an amazing gift. I will always worry about my cancer coming back but right now I am so thankful and blessed to be here today. Thank you everyone for your love and support!!!
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THE ELEPHANT IS ALWAYS IN THE ROOM

973 days ago they told me they got it all.  Well to be honest I was out of it for the first 3 days after surgery so I didn’t hear them until 970 days ago.  But, my family knew and was relieved.  Me though am always waiting for the other shoe to fall and the elephant is ALWAYS in the room.  They learn new nuances every day, but no one knows for sure why one person gets cancer and another doesn’t when there is no direct link.
Every bite of food I take, every prescription, every breath of air, every time I’m around fertilizer, clean the bathroom or use kitchen spray cleaner remind me that I don’t know how I got this horrible cancer and that there is is still the risk of repeating iteself.  
After surgery I was poked, prodded and put through every possible test to double check their findings because they couldn’t believe they got it all.  The tumor was large (volleyball size) but contained – unheard of for this type of cancer so I got a new label – rare and uncommon gynecological tumor which spark a new round of tests.  
I dread the waiting between check-ups every few months.  I’m always afraid that I might not get a clean bill of health with every blood test and check up.  In 854 days I can claim remission, but even then there are no guarantees.  While I know I am one really lucky girl, I am always vigilant.  
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GIVE YOURSELF A BIRTHDAY PRESENT

Three years ago I gave myself a birthday present and decided to make all my yearly appointments that I’d neglected the previous year while dealing with my in-laws.  I was dealing with a new city, new insurance region, new doctors. As with any insurance these days, I needed referrals to specialists.

When I received the first referral in the mail, I called to make my appointment. The receptionist was quite pleasant, but I was quite taken aback when she asked what my cancer diagnosis was.  I said I didn’t have one and she said I’m sorry we can’t see you then, but that’s good news.  I called my doctor back and asked for a new referral.  In all, I was seeking 3 referrals for 3 separate problems.  The next week I received the referral for problem number two and was met with a similar conversation with another receptionist.  Once again I called my doctor’s office back and started over on the referral process.  Next came the third referral for another doctor at the same facility.  I was met once again with the same conclusions, “sorry we can’t accept you because you have no cancer diagnosis”.  All of these referrals were to MD Anderson.  

My doctor’s office never did get any of the referrals handled with the insurance company. I called the insurance company myself and found that I didn’t even need a referral for my well woman exam in this region and they gave me the information for the UTMB women’s clinic.  It was here that I was finally seen and originally diagnosed.  It was here that a humble doctor said he wasn’t comfortable dealing with this and asked where I’d like to be referred.  I know and believe that all of these “misdirected” referrals were so that MD Anderson would be on the tip of my tongue.   When the doctor said the tumor was the size of large grapefruit I was distressed.  When he told me he was uncomfortable removing a tumor that size and wanted to refer me somewhere else, I said MD Anderson.

Spillage (yep, that’s a technical term) of tumor cells influences the incidence of local recurrence.  Spillage of tumor cells,  has a negative effect on survival rates. When the diagnosing doctor used the term “spillage”  I thought  he was making it up.  Then I looked it up.  Spillage is basically what happens when a tumor tears, rips or ruptures.

980 days ago, I was diagnosed with the “silent killer”, Ovarian Cancer.  Ovarian cancer, if detected early is 90 percent curable. But very few cases are discovered in the earliest stage. Then, there are miracles, while not many, and I am blessed to be one. Keep in mind I also believe one of the things that saved my life was a very progressive rhuematologist that helped learn to live without chemical drugs 28 years ago by convincing me to eat a healthy diet free of preservatives, altered sugars, etc… As she said if it’s blue and not a blueberry, don’t eat it and the same goes for orange.  Damn, there went the cheetos. The oncologist is convinced that the cancer had nothing in my body to thrive on because I eat healthy, fresh home prepared foods without hormones and preservatives.

When my surgeon, Dr. Diane Bodurka (a wonderful lady, doctor, surgeon, oncologist – there’s a good reason she’s head of the department)  said that she believed she got the tumor out intact without spillage, I felt relieved.  When she told me it was actually the size of a volleyball, had torsioned itself around everything, but not adhered to any major organs, I felt blessed. 947 days later – in the throes of REMISSION and alive to live another birthday I feel twice blessed.

When I was first diagnosed, they limited ALL my activity including driving in an effort to prevent rupturing the tumor.  Ironically the year prior had been full of strenuous activity, moving boxes and furniture – once again proving that my guardian angel was looking out for me.  The only symptom I ever had, I didn’t even know I was having because it mimicked a chronic appendix of some 35+ years.

Ovarian cancer is often called the “silent” killer because many times there are no symptoms until the disease has progressed and it’s too late.  Most die within five years of their diagnosis — because by the time doctors find the disease, it has already spread. Early symptoms of ovarian cancer are often mild, making this disease difficult to detect.  Sadly, a lack of symptoms from this disease means that about 75% of ovarian cancer cases will have spread to the abdomen by the time they are detected and, unfortunately, most patients die within five years. 

New methods for early screening of ovarian cancer are being investigated including ultrasound in conjunction with a blood test. The blood test may detect a cancer protein called CA 125, which is sometimes detected in the blood of women with ovarian cancer. This is the test that would have probably saved Gilda Radner’s life.

These tests are useful in evaluating tumor growth, however neither of them has been proven as a reliable way to screen for ovarian cancer.  In my own case, the blood work was within normal range while there was a volleyball sized tumor inside me.  Quite possibly they were within range because the tumor was still intact, having NOT spread, but no one knows for sure so be vigilant!!!

Ultrasound can detect changes, but it does not give enough information alone to diagnose ovarian cancer. The CA 125 blood test can return positive results when no cancer is present due to other conditions a woman may experience including fibroid tumors, endometriosis, pelvic infection, pregnancy, or other non-gynecological problems. 

The treatment for ovarian cancer varies according to a number of factors. For most women, the first treatment is also a diagnostic procedure which involves surgery to determine the extent to which the disease has spread. As a result of surgery, the cancer will be staged.

Stages range from I to IV, with I being the earliest and IV being the most advanced stage. Treatment of ovarian cancer is based on the stage and grade of the disease. A pathologist will determine the grade (how likely it is to spread) of the malignancy. 

Many times ovarian cancer and breast cancer are linked. Because of my family history with breast cancer (which is what I was always afraid of getting) I also had the genetic BRCA 1&2 tests done this year.  I would have cut off my breasts had they been positive.  Once again fortune smiled down on me.  The results were negative.  I guess one cancer was enough!

 Are You at Risk?

  • An immediate (mother, sister, or daughter) family member who has had ovarian cancer increases your risk of developing this disease about three times, giving you a 5% to 7% risk of future ovarian cancer.
  • When the cause is genetic, ovarian cancer usually shows up a decade earlier in each successive generation. (If your mother had ovarian cancer in her 60s, you stand a good chance that this disease will develop in you in your 50s.)
  • Genetic counseling is a good idea for women with a family history of breast or ovarian cancers. Women with a family history may opt for oophorectomy, although this procedure does not offer absolute protection it does reduce risk by 75% to 90%
  • Research has determined that women who use powders to dust their genital areas have a 60% higher risk of ovarian cancer. Feminine deodorant sprays can almost double your risk.
  • Women who use oral contraceptives for at least five years reduce their chance of developing ovarian cancer by half for the short-term following use and possibly for lifetime. The longer you use the pill, the lower your risk.
  • Having two or three children can cut your risk by as much as 30% over women who never conceive or give birth. Having five or more children reduces the risk up to 50%, and breastfeeding your children can further reduce your risk.
  • Tubal ligation reduces a woman’s risk up to 70%.

Remember, the best way to detect ovarian cancer is by regular  examinations.

Symptoms of Ovarian Cancer

If symptoms are present, they may include:

  • unusual abdominal feeling of fullness
  • pelvic discomfort
  • unexplained indigestion, gas, or bloating
  • pain during sexual intercourse
  • abnormal bleeding
  • swelling and/or pain in the abdomen

Ovarian Cancer Fact 1. Ovarian cancer is the leading cause of gynecologic cancer deaths among American women.

Ovarian Cancer Fact 2. Only 24 percent of ovarian cancers are diagnosed at an early stage, when the cancer is confined to the ovary. Most cases are diagnosed after the cancer has spread to other parts of the body, making it difficult to treat successfully.

Ovarian Cancer Fact 3. One woman out of every 55 (approximately 1.8 percent) will develop ovarian cancer at some point in her lifetime.

Ovarian Cancer Fact 4. Ovarian cancer is most common in women who have already gone through menopause. The average age for developing ovarian cancer is 61 years old.

Ovarian Cancer Fact 5. For the small number of women who are fortunate enough to have their cancer diagnosed before it has spread beyond the ovary, the chance for recovery is 85 to 90 percent. (A fact not lost on me)

Ovarian Cancer Fact 6. For the majority of women in whom the disease has spread beyond the ovary, the chance of living for five years after the diagnosis is 20 to 25 percent.

Ovarian Cancer Fact 7. A major risk factor for getting ovarian cancer is a personal history of breast, endometrial or colon cancer.

Ovarian Cancer Fact 8. The only sure way to diagnose ovarian cancer is through microscopic examination of abnormal fluid or tissue, obtained by needle aspiration (withdrawal of fluid or tissue from a suspicious area though a special, wide needle) or surgery.

Ovarian Cancer Fact 9. Hycamtin is one of the first of a new kind of anti-cancer drugs that kills cancer cells by inhibiting an enzyme essential to the replication of human DNA.

Give yourself a birthday present too and make your annual well woman appointment today.

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GIVE YOURSELF A PRESENT

Tomorrow is my birthday and three years ago I gave myself a birthday present and decided to make all my yearly appointments that I’d neglected the previous year while dealing with my in-laws.  I was dealing with a new city, new insurance region, new doctors. As with any insurance these days, I needed referrals to specialists.

When I received the first referral in the mail, I called to make my appointment. The receptionist was quite pleasant, but I was quite taken aback when she asked what my cancer diagnosis was.  I said I didn’t have one and she said I’m sorry we can’t see you then, but that’s good news.  I called my doctor back and asked for a new referral.  In all, I was seeking 3 referrals for 3 separate problems.  The next week I received the referral for problem number two and was met with a similar conversation with another receptionist.  Once again I called my doctor’s office back and started over on the referral process.  Next came the third referral for another doctor at the same facility.  I was met once again with the same conclusions, “sorry we can’t accept you because you have no cancer diagnosis”.  All of these referrals were to MD Anderson.  

My doctor’s office never did get any of the referrals handled with the insurance company. I called the insurance company myself and found that I didn’t even need a referral for my well woman exam in this region and they gave me the information for the UTMB women’s clinic.  It was here that I was finally seen and originally diagnosed.  It was here that a humble doctor said he wasn’t comfortable dealing with this and asked where I’d like to be referred.  I know and believe that all of these “misdirected” referrals were so that MD Anderson would be on the tip of my tongue.   When the doctor said the tumor was the size of large grapefruit I was distressed.  When he told me he was uncomfortable removing a tumor that size and wanted to refer me somewhere else, I said MD Anderson.

Spillage (yep, that’s a technical term) of tumor cells influences the incidence of local recurrence.  Spillage of tumor cells,  has a negative effect on survival rates. When the diagnosing doctor used the term “spillage”  I thought  he was making it up.  Then I looked it up.  Spillage is basically what happens when a tumor tears, rips or ruptures.

980 days ago, I was diagnosed with the “silent killer”, Ovarian Cancer.  Ovarian cancer, if detected early is 90 percent curable. But very few cases are discovered in the earliest stage. Then, there are miracles, while not many, and I am blessed to be one. Keep in mind I also believe one of the things that saved my life was a very progressive rhuematologist that helped learn to live without chemical drugs 28 years ago by convincing me to eat a healthy diet free of preservatives, altered sugars, etc… As she said if it’s blue and not a blueberry, don’t eat it and the same goes for orange.  Damn, there went the cheetos. The oncologist is convinced that the cancer had nothing in my body to thrive on because I eat healthy, fresh home prepared foods without hormones and preservatives.

When my surgeon, Dr. Diane Bodurka (a wonderful lady, doctor, surgeon, oncologist – there’s a good reason she’s head of the department)  said that she believed she got the tumor out intact without spillage, I felt relieved.  When she told me it was actually the size of a volleyball, had torsioned itself around everything, but not adhered to any major organs, I felt blessed. 947 days later – in the throes of REMISSION and alive to live another birthday I feel twice blessed.

When I was first diagnosed, they limited ALL my activity including driving in an effort to prevent rupturing the tumor.  Ironically the year prior had been full of strenuous activity, moving boxes and furniture – once again proving that my guardian angel was looking out for me.  The only symptom I ever had, I didn’t even know I was having because it mimicked a chronic appendix of some 35+ years.
Ovarian cancer is often called the “silent” killer because many times there are no symptoms until the disease has progressed and it’s too late.  Most die within five years of their diagnosis — because by the time doctors find the disease, it has already spread. Early symptoms of ovarian cancer are often mild, making this disease difficult to detect.  Sadly, a lack of symptoms from this disease means that about 75% of ovarian cancer cases will have spread to the abdomen by the time they are detected and, unfortunately, most patients die within five years. 

New methods for early screening of ovarian cancer are being investigated including ultrasound in conjunction with a blood test. The blood test may detect a cancer protein called CA 125, which is sometimes detected in the blood of women with ovarian cancer. This is the test that would have probably saved Gilda Radner’s life.

These tests are useful in evaluating tumor growth, however neither of them has been proven as a reliable way to screen for ovarian cancer.  In my own case, the blood work was within normal range while there was a volleyball sized tumor inside me.  Quite possibly they were within range because the tumor was still intact, having NOT spread, but no one knows for sure so be vigilant!!!
Ultrasound can detect changes, but it does not give enough information alone to diagnose ovarian cancer. The CA 125 blood test can return positive results when no cancer is present due to other conditions a woman may experience including fibroid tumors, endometriosis, pelvic infection, pregnancy, or other non-gynecological problems. 

The treatment for ovarian cancer varies according to a number of factors. For most women, the first treatment is also a diagnostic procedure which involves surgery to determine the extent to which the disease has spread. As a result of surgery, the cancer will be staged.

Stages range from I to IV, with I being the earliest and IV being the most advanced stage. Treatment of ovarian cancer is based on the stage and grade of the disease. A pathologist will determine the grade (how likely it is to spread) of the malignancy. 
Many times ovarian cancer and breast cancer are linked. Because of my family history with breast cancer (which is what I was always afraid of getting) I also had the genetic BRCA 1&2 tests done this year.  I would have cut off my breasts had they been positive.  Once again fortune smiled down on me.  The results were negative.  I guess one cancer was enough!

Are You at Risk?

  • An immediate (mother, sister, or daughter) family member who has had ovarian cancer increases your risk of developing this disease about three times, giving you a 5% to 7% risk of future ovarian cancer.
  • When the cause is genetic, ovarian cancer usually shows up a decade earlier in each successive generation. (If your mother had ovarian cancer in her 60s, you stand a good chance that this disease will develop in you in your 50s.)
  • Genetic counseling is a good idea for women with a family history of breast or ovarian cancers. Women with a family history may opt for oophorectomy, although this procedure does not offer absolute protection it does reduce risk by 75% to 90%
  • Research has determined that women who use powders to dust their genital areas have a 60% higher risk of ovarian cancer. Feminine deodorant sprays can almost double your risk.
  • Women who use oral contraceptives for at least five years reduce their chance of developing ovarian cancer by half for the short-term following use and possibly for lifetime. The longer you use the pill, the lower your risk.
  • Having two or three children can cut your risk by as much as 30% over women who never conceive or give birth. Having five or more children reduces the risk up to 50%, and breastfeeding your children can further reduce your risk.
  • Tubal ligation reduces a woman’s risk up to 70%.

Remember, the best way to detect ovarian cancer is by regular  examinations.

Symptoms of Ovarian Cancer

If symptoms are present, they may include:

  • unusual abdominal feeling of fullness
  • pelvic discomfort
  • unexplained indigestion, gas, or bloating
  • pain during sexual intercourse
  • abnormal bleeding
  • swelling and/or pain in the abdomen

Ovarian Cancer Fact 1. Ovarian cancer is the leading cause of gynecologic cancer deaths among American women.

Ovarian Cancer Fact 2. Only 24 percent of ovarian cancers are diagnosed at an early stage, when the cancer is confined to the ovary. Most cases are diagnosed after the cancer has spread to other parts of the body, making it difficult to treat successfully.

Ovarian Cancer Fact 3. One woman out of every 55 (approximately 1.8 percent) will develop ovarian cancer at some point in her lifetime.

Ovarian Cancer Fact 4. Ovarian cancer is most common in women who have already gone through menopause. The average age for developing ovarian cancer is 61 years old.

Ovarian Cancer Fact 5. For the small number of women who are fortunate enough to have their cancer diagnosed before it has spread beyond the ovary, the chance for recovery is 85 to 90 percent. (A fact not lost on me)

Ovarian Cancer Fact 6. For the majority of women in whom the disease has spread beyond the ovary, the chance of living for five years after the diagnosis is 20 to 25 percent.

Ovarian Cancer Fact 7. A major risk factor for getting ovarian cancer is a personal history of breast, endometrial or colon cancer.

Ovarian Cancer Fact 8. The only sure way to diagnose ovarian cancer is through microscopic examination of abnormal fluid or tissue, obtained by needle aspiration (withdrawal of fluid or tissue from a suspicious area though a special, wide needle) or surgery.

Ovarian Cancer Fact 9. Hycamtin is one of the first of a new kind of anti-cancer drugs that kills cancer cells by inhibiting an enzyme essential to the replication of human DNA.

Give yourself a birthday present too!
Make your annual well woman appointment today.
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Survivor Syndrome or PTSD and reaching out to those you love

Survivor syndrome, also called concentration camp syndrome is known to have been used to describe the reactions and behaviors of people who have survived massive and adverse events. Symptoms include anxiety, depression, social withdrawl, sleep disturbance, nightmares, physical complaints and emotional lability (something that is constantly undergoing change or something that is likely to undergo change) with a loss of drive. Commonly such survivors feel guilty that they have survived the trauma and others did not.

Post traumatic stress disorder (PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in a psychological trauma. This event may involve the threat of death to oneself or to physical, sexual, or psychological integrity, overwhelming the individual’s ability to cope. Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal—such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria say that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.

Definitions aside, you change when life changes – usually in small increments.  Too many changes all at once or too many too fast can turn a relatively normal person into a raving lunatic. That’s me recently, the raving lunatic who just plain shut down after one too many drastic uncontrollable changes in my life.  I was always the optimistic, glass full girl.  Now I have to admit you can’t say always.  I am finally starting to see my way out of the survivor guilt and accepting the way things are.  I AM going to dig my way out of this hole and back to my friends and family that loved me enough to stand by me through it all.  That is after the next 3 surgeries and then maybe this will begin to be over.  It’s been a long 2 years and now I’m choosing to remove people from my life who are bi-polar, negative, drama queens. Like my old rhuematologist said, “It is okay to set your own boundaries and remove the nuts from your life”.  CONSIDER YOURSELF REMOVED if you’re a nut or a drama queen – life’s just too short!

Thanks for bearing with me!
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LEMONS to LEMONADE, MY NEW MANTRA FOREVER AS I TRAVEL DOWN LIFE’S CRAZY ROAD

Life's crazy roadMany of you know that despite my normally always positive outlook on life I have not always been the healthiest of people. Years and years ago I began a life style change that would make today’s college student cringe when I was diagnosed with Systemic Lupus during college. I gave up processed food, fast food, drinking and excessive sweets. It worked! I was able to get off most medications, started feeling better and was able to live life to a fuller extent.

I followed a stringent preventative schedule, got well woman exams, took my vitamins, followed a healthy diet and yet several years later was diagnosed with Ovarian Cancer. Miracle of all miracles and a volleyball sized tumor later, my wonderful surgeon got all of the cancer and I began to breathe AND live again as I recovered from surgery.

During the surgery they discovered a Hiatal Hernia, but let it be since the cancer was more important. It was a long surgery with a 10 inch scar to remind me everyday how blessed I am to still be among the living. It was also a long recovery with a multitude of side affects along the way.

As I got stronger and began to live again, the Hiatal Hernia reared its ugly head and made me more and more miserable. The pain and side affects increased day by day and eventually led to a new surgery last June. This surgery was a Nissen Fundoplication that ended in stomach reconstruction when they needed to remove several inches of shredded esophagus and build a new valve. It also left me on a liquid diet for several months. Even after that I have been slowly adding food by food to test my ability to tolerate and digest certain foods – kind of like teaching a baby to eat one food at a time. Recovering from yet another surgery left me fighting for my strength and energy. Water Aerobics and walking became my daily friend and life saver.

The first side affect that is really making life difficult is searing pain. Until recently I was seriously afraid the cancer was back. But after a recent CT scan I’m told there is no sign of recurring metastatic disease. Yet they did manage to find a few other things! DAMN it’s always something. FLD for one. What is FLD aka Non-alcoholic Fatty Liver Disease? Well it’s something I shouldn’t have given how well I eat! But, yet I have it. I will be going for a Cardiac CT scan in the near future to determine if my life is about to change yet again by adding a dreaded lifetime drug to maintain the FLD.

Then comes the second of the side affects that bothers even more, my vision. After the first surgery one of the doctors mentioned that changes in my vision might happen and recommended not changing to contacts right away. Unfortunately I did begin to see changes and my sight was getting worse, blurry and distorted close up. I recently met with a new eye doctor and was told I have a macular hole. Between the eye doctor, my primary and my new oncologist we all agree on one thing – there is NO good reason that these things are happening to me – I eat well, drink plenty of fluids, get plenty of exercise and rest.

So here we go for more drastic changes. ALL my adult life my mantra has been about turning lemons into lemonade and some days I find it difficult to understand how it is even possible that the pitcher of lemonade is still half full and able to replenish itself. I do realize I would do whatever was necessary to stay healthy and be able to care for my family. I’ve been given a list of supplements to add to my diet, to eat even more fish, fruit, leafy greens and told to wear sunglasses ALL the time. The rest I’m choosing to do as I continue to deal with adding foods to my diet and dealing with new conditions that can’t be eliminated, but CAN BE controlled.

Being removed from my diet on a regular basis is bread in general, red meat as a whole, fast food (what little I eat) and ALL processed food!  Now you might notice on future menus red meat recipes, but that’s okay as I won’t force hubby to adapt to my new ways all the time.

PERMANENT MENU REVISIONS

menu planning 2013Menu Plan Monday hosted by Laura at I’m an Organizing Junkie


DATE BREAKFAST LUNCH DINNER
MONDAY 2/25 CHEERIOS, BANANA & YOGURT TUNA & ORANGE LEMON GLAZED RED SNAPPER, BROCCOLINI, 4 OUNCES GREEN GODESS & SALAD
TUESDAY 2/26 OATMEAL, BANANA & YOGURT TOMATOES, CUCUMBERS & SNAP PEAS
PINK LEMON CHICKEN, BROCCOLINI 4 OUNCES GREEN GODESS & SALAD
WEDNESDAY 2/27 CHEERIOS, BANANA & YOGURT TUNA & ORANGE AVOCADO SALAD, 4 OUNCES GREEN GODESS & ROAST CHICKEN
THURSDAY 2/28 OATMEAL, BANANA & YOGURT TOMATOES, CUCUMBERS & SNAP PEAS CRAB SALAD, TOMATOES, 4 OUNCES GREEN GODESS & SNAP PEAS
FRIDAY 3/1 OATMEAL, BANANA & YOGURT CRAB SALAD ROCKFISH COD, SPINACH SALAD, 4 OUNCES GREEN GODESS & FRUIT SALAD
SATURDAY 3/2 CHEERIOS, BANANA & YOGURT TUNA & ORANGE BAKED WHITE FISH, BROCCOLINI, TOMATO SLICES & SNAP PEAS
SUNDAY 3/3 SCRAMBLED EGGS PROTEIN DRINK MAHI MAHI IN ORANGE SAUCE, 4 OUNCES GREEN GODESS, BROCCOLINI & SALAD
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GIVE YOURSELF A BIRTHDAY PRESENT

Two years ago I gave myself a birthday present and decided to make all my yearly appointments that I’d neglected the previous year while dealing with my in-laws.  I was dealing with a new city, new insurance region, new doctors. As with any insurance these days, I needed referrals to specialists.
When I received the first referral in the mail, I called to make my appointment. The receptionist was quite pleasant, but I was quite taken aback when she asked what my cancer diagnosis was.  I said I didn’t have one and she said I’m sorry we can’t see you then, but that’s good news.  I called my doctor back and asked for a new referral.  In all, I was seeking 3 referrals for 3 separate problems.  The next week I received the referral for problem number two and was met with a similar conversation with another receptionist.  Once again I called my doctor’s office back and started over on the referral process.  Next came the third referral for another doctor at the same facility.  I was met once again with the same conclusions, “sorry we can’t accept you because you have no cancer diagnosis”.  All of these referrals were to MD Anderson.  
My doctor’s office never did get any of the referrals handled with the insurance company. I called the insurance company myself and found that I didn’t even need a referral for my well woman exam in this region and they gave me the information for the UTMB women’s clinic.  It was here that I was finally seen and originally diagnosed.  It was here that a humble doctor said he wasn’t comfortable dealing with this and asked where I’d like to be referred.  I know and believe that all of these “misdirected” referrals were so that MD Anderson would be on the tip of my tongue.   When the doctor said the tumor was the size of large grapefruit I was distressed.  When he told me he was uncomfortable removing a tumor that size and wanted to refer me somewhere else, I said MD Anderson.
Spillage (yep, that’s a technical term) of tumor cells influences the incidence of local recurrence.  Spillage of tumor cells,  has a negative effect on survival rates. When the diagnosing doctor used the term “spillage”  I thought  he was making it up.  Then I looked it up.  Spillage is basically what happens when a tumor tears, rips or ruptures.
991 days ago, I was diagnosed with the “silent killer”, Ovarian Cancer.  Ovarian cancer, if detected early is 90 percent curable. But very few cases are discovered in the earliest stage. Then, there are miracles, while not many, and I am blessed to be one.
When my surgeon, Dr. Diane Bodurka (a wonderful lady, doctor, surgeon, oncologist – there’s a good reason she’s head of the department)  said that she believed she got the tumor out intact without spillage, I felt relieved.  When she told me it was actually the size of a volleyball, had torsioned itself around everything, but not adhered to any major organs, I felt blessed. 960 days later – in the throes of REMISSION and alive to live another birthday I feel twice blessed.
When I was first diagnosed, they limited ALL my activity including driving in an effort to prevent rupturing the tumor.  Ironically the year prior had been full of strenuous activity, moving boxes and furniture – once again proving that my guardian angel was looking out for me.  The only symptom I ever had, I didn’t even know I was having because it mimicked a chronic appendix of some 35+ years.

Ovarian cancer is often called the “silent” killer because many times there are no symptoms until the disease has progressed and it’s too late.  Most die within five years of their diagnosis — because by the time doctors find the disease, it has already spread. Early symptoms of ovarian cancer are often mild, making this disease difficult to detect.  Sadly, a lack of symptoms from this disease means that about 75% of ovarian cancer cases will have spread to the abdomen by the time they are detected and, unfortunately, most patients die within five years. 
New methods for early screening of ovarian cancer are being investigated including ultrasound in conjunction with a blood test. The blood test may detect a cancer protein called CA 125, which is sometimes detected in the blood of women with ovarian cancer. This is the test that would have probably saved Gilda Radner’s life.
These tests are useful in evaluating tumor growth, however neither of them has been proven as a reliable way to screen for ovarian cancer.  In my own case, the blood work was within normal range while there was a volleyball sized tumor inside me.  Quite possibly they were within range because the tumor was still intact, having NOT spread, but no one knows for sure so be vigilant!!!

Ultrasound can detect changes, but it does not give enough information alone to diagnose ovarian cancer. The CA 125 blood test can return positive results when no cancer is present due to other conditions a woman may experience including fibroid tumors, endometriosis, pelvic infection, pregnancy, or other non-gynecological problems. 

The treatment for ovarian cancer varies according to a number of factors. For most women, the first treatment is also a diagnostic procedure which involves surgery to determine the extent to which the disease has spread. As a result of surgery, the cancer will be staged.
Stages range from I to IV, with I being the earliest and IV being the most advanced stage. Treatment of ovarian cancer is based on the stage and grade of the disease. A pathologist will determine the grade (how likely it is to spread) of the malignancy.

Are You at Risk?

  • An immediate (mother, sister, or daughter) family member who has had ovarian cancer increases your risk of developing this disease about three times, giving you a 5% to 7% risk of future ovarian cancer.
  • When the cause is genetic, ovarian cancer usually shows up a decade earlier in each successive generation. (If your mother had ovarian cancer in her 60s, you stand a good chance that this disease will develop in you in your 50s.)
  • Genetic counseling is a good idea for women with a family history of breast or ovarian cancers. Women with a family history may opt for oophorectomy, although this procedure does not offer absolute protection it does reduce risk by 75% to 90%
  • Research has determined that women who use powders to dust their genital areas have a 60% higher risk of ovarian cancer. Feminine deodorant sprays can almost double your risk.
  • Women who use oral contraceptives for at least five years reduce their chance of developing ovarian cancer by half for the short-term following use and possibly for lifetime. The longer you use the pill, the lower your risk.
  • Having two or three children can cut your risk by as much as 30% over women who never conceive or give birth. Having five or more children reduces the risk up to 50%, and breastfeeding your children can further reduce your risk.
  • Tubal ligation reduces a woman’s risk up to 70%.
Remember, the best way to detect ovarian cancer is by regular  examinations.

Symptoms of Ovarian Cancer

If symptoms are present, they may include:

  • unusual abdominal feeling of fullness
  • pelvic discomfort
  • unexplained indigestion, gas, or bloating
  • pain during sexual intercourse
  • abnormal bleeding
  • swelling and/or pain in the abdomen
Ovarian Cancer Fact 1. Ovarian cancer is the leading cause of gynecologic cancer deaths among American women.

Ovarian Cancer Fact 2. Only 24 percent of ovarian cancers are diagnosed at an early stage, when the cancer is confined to the ovary. Most cases are diagnosed after the cancer has spread to other parts of the body, making it difficult to treat successfully.
Ovarian Cancer Fact 3. One woman out of every 55 (approximately 1.8 percent) will develop ovarian cancer at some point in her lifetime.
Ovarian Cancer Fact 4. Ovarian cancer is most common in women who have already gone through menopause. The average age for developing ovarian cancer is 61 years old.
Ovarian Cancer Fact 5. For the small number of women who are fortunate enough to have their cancer diagnosed before it has spread beyond the ovary, the chance for recovery is 85 to 90 percent. (A fact not lost on me)
Ovarian Cancer Fact 6. For the majority of women in whom the disease has spread beyond the ovary, the chance of living for five years after the diagnosis is 20 to 25 percent.
Ovarian Cancer Fact 7. A major risk factor for getting ovarian cancer is a personal history of breast, endometrial or colon cancer.
Ovarian Cancer Fact 8. The only sure way to diagnose ovarian cancer is through microscopic examination of abnormal fluid or tissue, obtained by needle aspiration (withdrawal of fluid or tissue from a suspicious area though a special, wide needle) or surgery.
Ovarian Cancer Fact 9. Hycamtin is one of the first of a new kind of anti-cancer drugs that kills cancer cells by inhibiting an enzyme essential to the replication of human DNA.
Give yourself a birthday present too and make your annual well woman appointment today.
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YOU AND YOUR DOCTOR SHOULD DECIDE….

This is a phrase that you will see in almost all pharmaceutical descriptions of most drugs.  Today I found out just how scary that phrase is.
After my 10 inch zipper insertion, er cancer surgery I became very hypersensitive to pain and so my Fibromyalgia became the very bane of my existence.  My rhuematologist kept trying to put me on anti-depressants.  Now if you have ever met me you’d say, WHAT THE HELL?  I’m one of the happiest, most optimistic people you’ll ever meet.  I repeatedly declined the drugs.   A few months later my primary care doctor suggested a drug that worked well for Fibromyalgia and lo and behold it was the same drug the rhuematologist had suggested.  What the rhuematologist failed to explain was that these drugs failed as anti-depressants, but worked well for the pain of Fibromyalgia. After reading all the paperwork and discussing it we agreed the benefits outweighed the risks and it was worth a try.  It was amazing! for a while anyway.  Somewhere around 6 months side effects began creeping in.  First one, then a second and a third and when a fourth and fifth happened I scheduled an appointment with my now new primary care doctor (I sure miss my last one).
I made a list of the side affects that I was having, and this drug has some doozies – things like weight gain, blurry vision, headaches, depression, suicidal thoughts, dry mouth… I discussed these with the doctor and he immediately took me off the medication and ordered a new medication all the while promising me that the new prescription DID NOT have the same side affects and had been around ‘forever’.  So I agreed to try it and went to pick up the prescription.  After I had paid for it, the pharmacist did a consult on the new medication and he told me that the doctor was incorrect and that all of the same side affects were a factor because the “pathways” were all the same.  REALLY?  Isn’t this what I just spent an hour trying to fix?
I don’t know about you, but I’m totally fed up with hearing about all the new drugs out there and their possible side affects, especially while I’m eating dinner.  I REALLY hate those commercials, but more importantly I hate being lied to or “misled” either by the commercial or the medical professional.  
Obviously the phrase, “You and your doctor should decide” really means you have to do double duty and do ALL the research, deciding and follow up for yourself.
Personally I’m going all natural and just going to find other ways to deal with the pain.  I did it when I was first diagnosed with SLE and I can do it again!!
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Survivor Syndrome or PTSD and reaching out to those you love

Survivor syndrome, also called concentration camp syndrome is known to have been used to describe the reactions and behaviors of people who have survived massive and adverse events. Symptoms include anxiety, depression, social withdrawl, sleep disturbance, nightmares, physical complaints and emotional lability (something that is constantly undergoing change or something that is likely to undergo change) with a loss of drive. Commonly such survivors feel guilty that they have survived the trauma and others did not.


Post traumatic stress disorder (PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in a psychological trauma. This event may involve the threat of death to oneself or to physical, sexual, or psychological integrity, overwhelming the individual’s ability to cope. Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal—such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria say that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.


Definitions aside, you change when life changes – usually in small increments.  Too many changes all at once or too many too fast can turn a relatively normal person into a raving lunatic. That’s me recently, the raving lunatic who just plain shut down after one too many drastic uncontrollable changes in my life.  I was always the optimistic, glass full girl.  Now I have to admit you can’t say always.  I am finally starting to see my way out of the survivor guilt and accepting the way things are.  I AM going to dig my way out of this hole and back to my friends and family that loved me enough to stand by me through it all.  

Thanks for bearing with me!

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STARTING FRESH

Most of you know that this past couple of years have been particularly hard for me with everything from care taking of family members with debilitating diseases, major moves and being diagnosed with cancer myself.
One of the things I like to do to feel better is have some ME time.  Now while everyone deserves some ME time, not everyone can afford to do the SPA experience regularly.  So, I thought I’d share some of my homemade recipes with you.

CUTICLE CREAM
2 tablespoons petroleum jelly
1/2 teaspoon sunflower oil
1/2 teaspoon lemon juice

  • Whip until creamy.
  • Massage cream into your cuticles and nail beds.
  • It will keep 2 weeks.

FACE WASH
1/4 cup honey
1/2 cup water
2 tablespoons mild liquid soap

  • Mix together in a bottle with a spout.  (I use an old honey bear bottle)
  • Shake before using so mixture is well blended

BODY SCRUB
1/2 cup ground coffee
1/2 cup sugar
1 cup sunflower oil

  • Whip together until well blended.
  • Place in an air-tight jar.
  • Massage over body.
  • Rinse and pat dry.
  • Keeps for a month.

GREEN TEA MASK
1 tablespoon green tea powder
3 drops lemon juice
1/2 cup warm water

  • Whip all together to form a paste.
  • Smooth over your face and relax 10-15 minutes.
  • Rinse and dry.
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