Did you get your bi-manual screening today?

Hello Everyone,

Today I have a lot of information to share, and hope that you take the time to read through the material.

The link below to the Ovarian Cancer National Alliance reveals three studies that show the medical profession is still at odds as to the best screening tools for ovarian cancer.  To me these findings are a little disappointing, only because we have to at least agree on the basics.  I completely agree that unnecessary surgeries are a possible danger for some women, but overall, if a thorough evaluation is done before surgery, the risk would be minimal.

I say this because the insurance industry and medicare need to know what can be covered and make a difference.  A real difference.

Medicare covers pelvic exams only once every 2 years.  According to http://seer.cancer.gov/statfacts/html/ovary.html
approximately 46% of women diagnosed with ovarian cancer are age 65 or older.  Think of all the women over 65 who will be diagnosed at an advanced stage because medicare doesn't cover this important screening tool more frequently!

I did not receive a bi-manual exam from my regular gynecologist and 5 months later I had Stage IIIC ovarian cancer and severe cervical dysplasia.

This hit me like a brick while being part of Survivors Teaching Students a few days ago.  Our facilitator was genius, a woman from the Ovarian Cancer National Alliance.  She kept talking about how important the bi-manual exam is and that it's "free".  The students appeared so interested.  I wonder if they were taken back though, like me.  It's almost too simple.  Sometimes we over-rely on technology........

This whole time I have been focusing on blood tests and trans-vaginal ultrasounds and CT scans.  We need all of the above, but the bi-manual exam is so important.  Our symptoms (see below) are primarily reflective of the displacement of the tissues and organs surrounding the ovaries, which is why interdisciplinary communication is SO important. Especially the GI doctors and the Gynecologists.

The facilitator was explaining that if the students know what normal ovaries feel like and where they are supposed to be, when they feel anything different, it can trigger them to look for more problems.

I never got the results of a trans-vaginal ultrasound that I had received about 10 months prior to diagnoses.  I was refused a CA 125 because of having rheumatoid arthritis.  I was told three times I was too young to have ovarian cancer.  If any of these people would have been aware of the basics, including the doctor who didn't even do a bi-manual exam, my ovarian cancer would have been caught in an earlier stage.

For women, early stage diagnoses of ovarian cancers can mean longer survival rates.  I try not to cling to statistics, but this is just common sense.

So if you are a medical student, please try to attend a Survivors Teaching Students presentation in your area.  It will make a big difference in the number of lives you save.  I was so honored to have a chance to share my story and the beautiful souls who participate in this program are just amazing.  I am so grateful to have had this chance and look forward to more opportunities to meet these incredible students.

The students are incredible because when they go to a presentation such as this, you know that they really care about their responsibility.  They are so busy, and that they took extra time to listen to us makes me feel good about their future.

Here is the link to the recent studies on what providers believe about ovarian cancer screening:

http://www.ovariancancer.org/2012/02/07/studies-show-many-providers-think-there-is-a-screening-test-for-ovarian-cancer/

Below is very informative information from Gilda's Club that provides support for bi-manual exams, CA125 and trans-vaginal ultrasounds.

Gilda Radner Familial Ovarian Cancer Registry

OVARIAN CANCER AWARENESS!

Ovarian Cancer Awareness

Cancer is a disease in which cells in the body grow out of control. Cancer is always named for the part of the body where it starts, even if it spreads to other body parts later. When cancer starts in the ovaries, it is called ovarian cancer. Women have two ovaries that are located in the pelvis, one on each side of the uterus. The ovaries make female hormones and produce eggs. 

Ovarian cancer will be diagnosed in about one out of 55 women (approximately 1.8%). Ovarian cancer counts for about 3% of all cancers in women. 

Ovarian cancer symptoms are often not taken seriously because they are similar to other women’s bodily complaints. The signs of ovarian cancer include:

•    A feeling of being bloated

•    Vague abdominal and pelvic discomfort

•    Gastrointestinal symptoms such as gas, nausea, indigestion

•    Constipation, diarrhea, frequent urination

•    Back pain and fatigue

•    Discomfort during sex

•    Vaginal bleeding

Although many women have these symptoms of ovarian cancer, they are often overlooked. If any of these ovarian cancer signs are experienced almost every day and persist for weeks, they could be an early warning of ovarian cancer and should be brought to your doctor’s attention. Gilda Radner had every one of these symptoms for over a year prior to her diagnosis. Early detection can make the difference. Over 70% of all women with ovarian cancer will not be diagnosed until the disease has spread beyond the ovary. This is because the symptoms of early ovarian cancer are often vague and can mimic other common medical problems. 

Unfortunately, there is no simple reliable ovarian cancer test available to screen women. Women need to stay in touch with their bodies and report changes to their doctors, because early detection is crucial. In a recent study more than 81% of women diagnosed with ovarian cancer had one of these symptoms before diagnosis. The Gilda Radner Familial Ovarian Cancer Registry has been recommending for over two decades that women experiencing continued symptoms of ovarian cancer have a combination of ovarian cancer tests that include

•    Pelvic examination

•    Vaginal ultrasound 

•    CA125 test

A Pap smear does not detect ovarian cancer. It is a screening tool to detect cervical cancer.

Ovarian cancer is most common in women who have already gone through menopause. The average age for developing ovarian cancer is 61 years of age. In families with two or more diagnoses of ovarian cancer, the cancer can be diagnosed at earlier ages, most commonly in their 40s.

Ovarian cancer prognosis is best when the disease is found early. Over 70% of all women with ovarian cancer will not be diagnosed until the disease has spread beyond the ovary. This is because the symptoms of early ovarian cancer can be vague and mimic other common medical problems. 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 cure is 85 to 90%. However, 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 between 20 and 25%.

Specific risk factors or ovarian cancer causes are not known, but risk factors that may increase your chances of getting ovarian cancer may include:

•    High fat diet

•    Never having children

•    Infertility, or not having children until late in life

•    Using infertility drugs but not becoming pregnant

•    Starting your periods at a young age, or going through menopause at an older than average age

•    Use of talcum powder on the genital area

•    Caucasian race

•    Have an Eastern European (Ashkenazi) Jewish background. 

•    Family history of ovarian cancer, breast cancer, or colon cancer

•    Peronal history of breast, uterine or colon cancer

Of these ovarian cancer risk factors, the most significant is a family history of ovarian cancer and /or breast cancer (on either your mother’s side of the family or your father’s side of the family). Having one close relative with ovarian cancer increases a woman’s risk of developing ovarian cancer by nearly three times. Having additional family members with breast cancer, ovarian cancer or colon cancer increases the risk even further.

Most women with ovarian cancer risk factors will never actually get ovarian cancer. Even with significant factors such as family history, the overall chances of getting ovarian cancer are still small.

Fortunately, there are a number of factors that are associated with lowering the risk of ovarian cancer.

•    Use of birth control pills

•    Having multiple children

•    Breast feeding

•    Tubal ligation

•    Having the ovaries removed (prophylactic oophorectomy)

If you have only one close relative, such as a mother or sister, with a history of ovarian cancer, the overwhelming chances are that you will not develop ovarian cancer. However, you are at increased risk, and special testing by your doctor may be indicated.

Once a year to every six months the Gilda Radner Familial Ovarian Cancer Registry recommends women who have at least one close relative with ovarian cancer have a

•    Pelvic examination

•    Vaginal ultrasound 

•    CA125 test

There are almost 40 different types of ovarian cancer. However, nine out of 10 ovarian cancer patients have epithelial tumors, which begin in the tissue of the surface of the ovary (epithelium). These are called adenocarcinomas – a malignant (cancerous) tumor of epithelial origin which begins in glandular tissue, Serous adenocarcinoma is seen most often, followed by endometrioid, mucinous and clear cell adenocarcinomas. Carcinomas of borderline malignancy are a subgroup of serous and mucinous adenocarcinomas, which are usually less aggressive and have a significantly higher cure rate than serous and mucinous adenocarcinomas.

The only definitive way to diagnose ovarian cancer is surgery to remove the tumor for laboratory evaluation. Fortunately, there are tests to help determine if surgery is needed. In addition to a pelvic exam, pelvic and vaginal ultrasound of the ovaries can often (but not always) help distinguish between malignant and benign (noncancerous) tumors. Cystic tumors (i.e., no solid areas suggesting cancer) are usually benign. When solid areas are seen on ultrasound, the chances of cancer increase. CA125 levels (a tumor marker in the blood), which are elevated in eight out of 10 women with advanced (stage III and stage IV) disease and in one out of two women with cancer localized in the ovary (stage I), can be determined by a simple blood test. However, CA125 levels can also be elevated in benign conditions – endometriosis, pelvic inflammatory disease of the tubes and ovaries, uterine fibroids, pregnancy – and sometimes in cancer of the pancreas and the gastrointestinal tract. 

Stage refers to how far the disease has advanced. Accurate staging is important in treatment planning because the prognosis (outcome) worsens as the stage increases. Generally, there are four stages of ovarian cancer. 

Stage I: The Cancer is limited to the ovary or ovaries

* Stage IA: The tumor is limited to inside of one ovary

* Stage IB: The tumor is limited to the inside of both ovaries

* Stage IC: The tumor is limited to one or both ovaries. In addtion, it appears on the surface of the ovary, a fluid-filled capsule 

has burst or cancer cells are found in the abdominal fluid.

Stage II: The cancer is one or both ovaries and has spread to other parts of the pelvis.

* Stage IIA: The tumor has spread to the uterus, fallopian tubes or both

* Stage IIB: The cancer has spread to the bladder, rectum or colon 

* Stage IIC: The cancer tumor has spread to any of the above. Also, it appears on the surface of the ovary, a fluid-filled capsule

has burst or cancer cells are found in the abdominal fluid.

Stage III: The cancer is in one or both ovaries and has spread to nearby lymph nodes or other abdominal organs, not including the liver

* Stage IIIA: The tumor has spread to the lining of the abdomen but cannot be seen. The cancer has not spread to the lymph 

nodes

* Stage IIIB: The cancer has sprread to the abdomen and is visible (less than two centimeters, about 3/4 of an inch in size).

The cancer has not spread to the lymph nodes.

* Stage IIIC: The cancer has spread into the abdomen and the deposits measure largers than two centimeters. The cancer has 

spread to the lymph nodes.

Stage IV: The cancer has spread to the lung, liver or other distant organs.

Recurrent Ovarian Cancer: The cancer has come back after it has been treated. It may appear in other parts of the body, but is still considered ovarian cancer.

Surgery is needed for all stages of ovarian cancer, and when the surgeon (gynecologic oncologist) can document that cancer is limited to the ovary, it may be the only treatment needed. To document this, four areas within the abdominal cavity are evaluated: 1) the under-surface of the diaphragm; 2) the omentum (a fatty apron that hangs down from the colon); 3) lymph nodes along the abdominal aorta; and 4) pelvic lymph nodes. The abdominal cavity is also washed with a saline solution and the cells are stained to identify floating cancer cells not visible to the naked eye. For stages II, III, and IV, maximal tumor removal, ideally when surgery is performed by a gynecologic oncologist, results in the best survival rate.

Most women will get chemotherapy. The most important chemotherapy (drug treatment) agents for ovarian cancer are Platinum compounds and Taxanes. These medications are usually given intravenously (through a vein) every three to four weeks, for six treatments. Patients are evaluated at each treatment and have a pelvic examination, C125 test and blood work. If the CA125 level was elevated before, and is falling during chemotherapy, the treatment is almost certainly effective. If the CA125 level rises significantly during chemotherapy, it usually means that the treatment is not effective. Some women receive intra-peritoneal chemotherapy (through a small catheter inserted into their abdominal [peritoneal] cavity). Intraperitoneal chemotherapy is often used when only very small deposits of cancer remain within the abdominal cavity after primary surgery.

There are other promising chemotherapy drugs available. Topotecan, Gemcitabine, Hexamethylmelamine, Tamoxifen, Doxil, or oral etoposide are effective in some women. In some patients, newer agents such as Avastin (an anti-angiogenic agent), are used to cut off blood supply to the tumor.

The BRCA1 and BRCA2 genes are responsible for many cases of familial ovarian cancer and familial breast cancer. Genes are small pieces of DNA, the material that acts as a master “blueprint” for all the cells in your body. Your genes determine such things as what color hair and eyes you have, how tall you are, and what you look like on the inside. They also instruct the body how to build all the chemical substances in your body that keep you running smoothly. Sometimes there is an error in one of your genes that causes it not to do its job properly. This can lead to disease and is called a “genetic defect”.

The BRCA1 and BRCA2 genes make a chemical substance that helps your body prevent cancer. Most women have two normal copies of the BRCA1 gene, or BRCA2 gene both of which produce this cancer preventing substance. Some women have a genetic defect in one of their two BRCA1 genes or BRCA2 genes and don’t produce a normal amount of this cancer fighting substance. These women are at very high risk of getting breast or ovarian cancer, as high as 85-90% over the course of a lifetime.

You inherit one copy of each of your genes from your mother and a second copy of each of your genes from your father. (This is why you look about half like your mother, and half like your father). If one of your parents has a defective BRCA1 gene or BRCA2 gene there is a 50% chance you may inherit their defective copy, and 50% chance you may inherit their normal copy. If you inherit a defective BRCA1 gene, or BRCA2 gene, then each of your children has 50% chance of inheriting it from you. 

Although there is a test to detect a defective BRCA1 or BRCA2 gene, such a test is not recommended for all women. Women with a strong family history of ovarian cancer should consult their physicians about the test. It is best that genetic testing start with the family member diagnosed with cancer.

All women with a genetic mutation for BRCA1 or BRCA2 should consider removal of their ovaries after childbearing. For other women at high risk for ovarian cancer, because of a strong family history of ovarian cancer who choose not to undergo genetic testing or who do not carry a mutation for BRCA1 or BRCA2 should consider the surgery in a case by case basis. The removal of the ovaries (oophorectomy) can be accomplished as a simply outpatient surgery using a device called a laparoscope. There is only minimal discomfort, and in most cases a woman can return to work in two to three days. Because there is still a small risk of a similar type of cancer of the lining of the abdominal cavity, called primary peritoneal cancer, women who have their ovaries removed should continue to be seen by a doctor every six months and should continue routinely have the CA125 blood test. Women who have had their ovaries removed may want to continue on hormone replacement therapy (HRT), but need to take a cautious approach, in consultation with her own physician, due to the recent findings from the Women’s Health Initiative.

Women who have two or more close relatives diagnosed with ovarian cancer are asked to join the Gilda Radner Familial Ovarian Cancer Registry. By doing so, they can be assured of being kept informed of the very latest developments in familial ovarian cancer research. JOIN THE REGISTRY TODAY.

ABOUT THE REGISTRY

The Familial Ovarian Cancer Registry was established in 1981 by M. Steven Piver, M.D., former chairman of the Department of Gynecologic Oncology at Roswell Park Cancer Institute. In May 1990, the Registry was renamed to honor the memory of comedian, Gilda Radner, who died of ovarian cancer in 1989. Ms. Radner’s husband, film actor Gene Wilder, is honorary chairman of the Registry.

The Registry is a national computer tracking system that stores data for women with two or more close relatives who have been diagnosed with ovarian cancer and offers education, information and a Helpline with peer support for women at high risk (family history) of ovarian cancer.

The Gilda Radner Familial Ovarian Registry is pursuing research into causes of familial cancer in collaboration with investigators at Roswell Park Cancer Institute, Stanford University School of Medicine and Cambridge University. Our goals are to identify new genes associated with familial ovarian cancer, thereby improving genetic and psychosocial counseling for individuals and families and to characterize lifestyle choices (i.e., oral contraceptive use, hormone replacement therapy, number of pregnancies) that reduce ovarian cancer risk in women who may be more susceptible to the disease. We hope to acquire information that will lead to better methods for detecting ovarian cancer, for reliable predictive testing for cancer predisposition and ultimately, preventing the disease in future generations.

To date, the Registry has amassed the data for over 4,500 women who have been diagnosed with ovarian cancer in more than 1,850 families with two or more members with ovarian cancer.

Roswell Park Cancer Institute was founded in 1898 and is one of the oldest comprehensive cancer centers in the world. It is dedicated to providing total care for cancer patients, conducting research into the causes, treatment and prevention of cancer and to public and professional education.

Gilda Radner Familial Ovarian Cancer Registry

Roswell Park Cancer Institute

Elm and Carlton Streets

Buffalo NY 14263

            1-800-OVARIAN      

            716-845-4503      

PET Scan Feb 14th.....sigh

Paul

A few days ago I was out with my mom, up in the Queen Anne neighborhood of Seattle.  She was in an appointment and I was doing my WALC, for my walking study, and passed by a pet store. I turned around because I felt like I needed to go inside, just had a gut feeling.  I entered the little shop, and was delighted with the homey feel, the wooden floors, organic foods and friendly employees.

In the front corner of the shop stood a crowd of people and I could tell they were looking at a little cutie that needed adopting.  I walked around for a bit waiting for them to leave.  When they left, I went over and found a cute little itty bitty black kitty.  It was soooooooooooooooooo cute.  Her sister was adopted earlier in the week, I was told, and there she was, all alone.

I reached in to touch the kitty's little nose and when her nose touched my fingertip, I felt a rush of energy.  It was amazing.  It was as if life was infused into my body for just a moment.  I have been thinking about adopting a cat from a shelter......oh boy oh boy oh boy.  This experience tells me so many things.........

Paul, the cat in the photo, is raised by my lovely nieces, sister and her husband.  I love Paul.  He gives me so much joy when I see him.  When I was living with mom, I so enjoyed the parade of dogs and their owners, and the kitty cats that roamed the area.  Each house around hers has a pet, and almost all have a cat, and two have dogs.  One of the cats always came over to say hello to me when I was outside.  I miss him too.  I really do.

So my PET scan is set for Feb 14th, Happy Valentine Day....oh well.  I am really staying positive.  Our eyes are in the front of our heads for a reason.  Each breath is a new breath.

On Monday I am going through something called leukapheresis to donate white blood cells for a study.  The group is called http://depts.washington.edu/tumorvac/.

Anything I can do to fight ovarian cancer, I will do.

On Wednesday I will also have an opportunity to participate in a presentation to gynecology students that teaches them about ovarian cancer.  I hope to be sharing my story so that they are more aware of how subtle the signs are and that  really the signs are still not fully known.  It's called Survivors Teaching Students.  It will be my first time, so I'm not sure how much I get to share.  I hope to send an update on that too.

The other thing going on is that it's time to re-invigorate the cause I started last year, turning Facebook Teal in September!  I know this may not necessarily be unique, in that everyone seems to have a cause these days. Every color in the rainbow is now linked to something, but ovarian cancer needs more awareness.

I created a "Cause" page that is a little more user friendly to promote this cause.  We'll probably need a million supporters to do this. http://www.causes.com/causes/651059-teal-to-heal-turn-facebook-teal-in-september/actions?recruiter_id=123458534

Everyone knows pink stands for breast cancer.....and for raising money and for raising awareness, that is a great thing.

Those of us effected by ovarian cancer can achieve the same results.  If it were up to me, all cancers would fall into the same color, and all cancers would get equal funding, equal research and equal support.  THAT is a topic for another day.  I'll never forget the call I had with the American Cancer Society and I was told I had the wrong cancer to get the resources I needed.  Just awful.

Anyway, all my best, peace and love!

Denise

PET Scan to be scheduled

On my way home from the oncology visit I decided to stop at the store, and met a homeless man eating samples from the deli soup cart.  He stopped me in my tracks with questions about movie characters, he was stuck on "Ghostbusters" and couldn't remember one of the actors.  Well, he was talking to the wrong person, because I can't remember stuff like that, so we had a heck of a time.

What caught me was that he was so engaging, polite, and outwardly interested.  He told me he was a veteran and had PTSD, and that the government gives him $500 a month.  He carries with him a bucket, his backpack and a squeegee.  He washes windows on cars to make extra money.  My mind flashed back to a time during college when a few of us drove to Mexico, and in the shanty towns children would surround the car, each with a squeegee, asking to wash your window for a quarter.

This man was tall, african american, handsome in a sense, but skinny as a rail.  He had on lots of layers but when I saw his waist I gasped.  It is heartbreaking.  He talked and talked and talked and talked and talked and talked.  He was well read, and put me to shame.

I gave him $10.  On my way out of the store, he stole a flower from the floral department and handed it to me.  He also kept asking for my phone number, but of course that wasn't going to give it to him, ha ha.  But he did give me a slight kiss on the back of my hand.  I can't believe I let that happen, but I wasn't afraid.

I drove away and he disappeared, probably went back into the store for more soup. I had not mentioned the obvious yesterday, but please keep this fellow in your prayers too.  What he must endure, I can't imagine.

Today my oncologist called to say my CT scan showed a few things and she wants to do a PET Scan.  I guess there is a small lesion in my lower pelvis and the one on my liver seems to be a concern.  She is being cautious and wants to check for activity levels in these areas.  They are small though, about half an inch or so.  My CA125 is 15, so that is good.  She said that if it were 100, then she would think I was in a recurrence.

So for now I await the nurse's call to schedule the PET Scan.  sigh

I scheduled a flight to Colorado the end of April, and I want to not be on chemo.....ugh....can't think about that I guess..........can't worry about that......if it looks like I need treatment then I'll take a short flight out early before I start treatment.  It took me over a year after I finished chemo the first time to be able to travel...........sigh.  This is the life of cancer, it comes and goes, it never completely goes away.

I feel nothing right now.  I have no control over this and ...................I don't know.  Anyway, I just pray that it's nothing to be worried about.  I was blessed to meet such an interesting person yesterday and I have a loving family, and am so grateful to God that my doctor is amazing.

Peace and Love,
Denise

CT scan and CA 125 on Tuesday

I have a follow-up with my gyoc-onc tomorrow.  Ct scan, Ca-125 test, and probably exam.  Usually I don't tell people much any more because the visits have been going great.  I'm going to attribute my severe fatigue to arthritis flare for now.  I'm confident all will be well.  Just putting it out there.  I'll post the results.

Yesterday for the first time I really visualized the size of the tumors that were removed during the initial surgery. 10 cm each, plus many more.  That's the perfect size of a grapefruit. Wow....

The first week in February I'm excited because I'll get to talk with some medical students and share with them what it was like to not be diagnosed, how cancer got missed and the goal is to help them be more aware of the subtleties of OC.  I'll let you know how that goes.  Had a great evening!!!!!  Got to see my nieces.....yay and spent dinner with my sister, her husband and the kids.  I'm smiling.

Left in the dust

This is a quick congratulatory note to my sweet sweet niece who passed one of her black belt tip tests over the weekend!  Her very gifted older sister got her black belt during the Holidays and now her little sister is on the way to earning her own.  I did not get to go to the graduation ceremony because I work evenings, but I was there in spirit.

I feel left in the dust because of how well conditioned they are.......

I have another niece and a nephew in another state who are remarkable hockey and soccer players.  I can't wait to get back home to see them play...just can't wait. I am so so lucky.  All of these children are amazing, cheerful, loving and mindful.  They're just darn good kids.

Although I was never blessed with the joy of being a mom, I feel as if I am partly their mom, if you know what I mean.

I just wanted to pass along some family cheer.  I wish I could be with all of them all the time..........sigh.

Be Love
Denise

"You were never here", she said to me

I was breathless and panicked as I was wandering around campus.  The buildings were all slanted, in differing directions, grayed, blue, black and silver.  Part of the campus looked like my old college and part of the campus was not anything I've seen before.  I ran into a building, and traversed the sloping shiny vinyl flooring, brown with tiny polka dots, and stopped at a large picture window.  I turned in circles and started to sweat. I was ready to cry.

A woman came out of the office and asked me if I was OK, and I said that I was lost.  I told her that I forgot my schedule.  I couldn't remember where I was supposed to be.  I was missing class and didn't want to be punished.  I was late. She took my name and came back with bad news.  She said "We have no record of your enrollment".  Ever.

I had been going there for four years, at least.  I ran outside and into another building and another and another. I  felt invisible.  I stood outside on a side walk and tried to study the spider like legs of each path, not knowing where to go. It was gray outside but patches of green come from the ground, giving me hope.

All at once ever person looked up into the sky, gasping, then suddenly shrieking, they started to run.  I turned around and looked up into the sky and the clouds were churning and turning green. The clouds seemed to be dropping like lead and in the clouds appeared shapes of the faces of enormous apes.  The shapes were squared and detailed, protruding forward.  Two, massive heads side by side. Facing them were two more apes, smaller, but equally detailed, as if the teams were going to fight.  I was imagining this horrific giant battle in the sky between these beasts when suddenly large bolts of lightening cracked across the sky.

The apes started moving closer towards each other and a large tornado came swirling down from the sky. I was jolted from my frozen state and ran as fast as I could to the closest building on campus.  The floor kept going down and down and down, sloping, never level, until it reached the end.  A long white room, with no tables or chairs.  It had a built in bench that ran along all the walls.  I took a seat in the corner.  I started to catch my breath and noticed others in the room.  One woman, three men.  One man looked like my high-school crush, and Tom Cruise all at the same time.  One man was elderly wearing a hat and the other was a younger guy with blonde hair.  The woman was young and pretty.  It felt as if we were going to live here for the rest of our lives.

Time moved forward and the younger woman and my high school crush guy had a baby.  The baby was so beautiful.  I was in awe of the child.  The couple did not love each other though, and she had secret feelings for the  younger blonde guy.  I waited one day to talk with the father to see if he would have an interest in me, but he did not.  He was not attracted to me.  My heart was crushed, I loved him.  The couple split and the baby stayed with the father.

While living in this shelter we could periodically go out of the room and get tea.  On one other special day we were able to bake a cake.  Periodically another child would appear to guide me to the tea room.  This child was 5 or 6, and would take my hand and ask me to get him some tea.  So we went for tea and it was a joy.  We all lived here for about  a year.

When the sun came out we were able to leave.  Outside in place of roads were train tracks.  The elderly man and I hopped on a push car, and made our way out of the city.  I looked back and saw smoldering buildings against a clear blue sky.  It was a beautiful day.

I woke up today at 3 pm.  This was my dream last night.  I slept for 14 hours.  It snowed in Seattle today.  

Off in the distance..............................

Mom's purple couch and in the middle is a seed pillow that warms me at night. This was given to me by my beautiful sister.  In the basket is a glimpse of a georgeous card made by my niece.

The coolest area rug, from mom.  Love this, it makes the room.

An old time view of SCCA.  I still pick up prescriptions from here and get to enjoy this amazing view.

The looming Seattle snowstorm awaits us, as cherish this moment of living.

I gaze off in the distance as I stand in the cancer center waiting room..  It's empty, quiet, yet behind the doors are patients hooked up to IV receiving deadly chemotherapy, to save their lives.  I'm here because I have to get more Lorazepam, it keeps me centered.  I started it while on Chemo because of the huge amount of fear of death and anxiety simmering in my soul.  Now, I think it will be with me forever.  I don't care.  I need it.

The photo of my mom's purple couch brings back so many beautiful memories from when she and her mate Haskell lived in Colorado.  We all grew up in Colorado.  I remember many nights lying across this comfy couch glued to CNN with them, as we discussed politics, world events, and stories from long ago.  Haskell was a treat, sort of like sweet inside but sour all around.  He was one of those highly intelligent people who seemed to know everything.  He constantly challenged me to do better by asking me all the time why I was doing something or supporting something.  Oh but he was one of the funniest people I have ever met...and he made my mom laugh.  He got my mom, he loved her and he took good care of her.  God Bless Haskell, even though he would not really want me to say that, I do, because he is an angel.

I missed today, and heard that it snowed in Seattle, and generally that is pretty big news.  I slept until 5:00 pm.....for the second time this week.  I am just tired or depressed or something,  I do think I am still recovering from all the extra work I did over the holidays.  Either way, although I love to dream, I am missing life too.

My dreams are so vivid.  I carry them from one night to the next.  Last night I dreampt that I lived in a "group home" with other young people.  We seemed healthy, so I don't know why we were there. The carpet was navy blue, and the lobby had gray vinyl chairs.  The walls that anchored the reception area were floor to ceiling pale blue.  The glass doors separating me from the receptionist slid back and forth, giving me a feeling that I was somehow captive, a prisoner.

Along that wall were giant post-it notes written by someone else, accusing me of ridiculing one of the other tenants.  They were huge notes, in yellow and pink.  They said things like "what about Gracie?"  "Sue is a liar"  "Denise did it"  ......I saw these and for some reason went behind the reception area to wash my hair.  For some reason the area had a salon-like hair washing station, and I had pain on my scalp.  The nurse said I could wash my hair, so I did and proceeded to blow dry my really long gray hair.  I desperately searched for a roller brush, and was relieved to find it.  As I had tossed my head upside down, and began to gently curl my locks with the heat of the dryer, I saw another with rollers in her hair, she was looking at me and laughing and then ran off when she saw that I'd seen her.

I ran out into the lobby, and there on the wall were more giant sticky notes that said to hate Denise.  Then all of sudden the lobby filled with other people and there was a girl named "Gracie" looking at them, and i turned around and the notes changed to messages to hate Gracie.  She was surrounded by people and she was crying.  They were protecting her. I felt "accused" but had done nothing.  Someone else was doing this evil.

She was taken to breakfast by a guy who looks like the guy named "Tony" from the show "24".  He wanted to get her away from the scene.

I begged her to trust me that we were being framed by someone in the home to make all of us hate each other.  Somehow I discovered it was an older woman playing tricks on us and I woke up.

If I close my eyes I can still see the whole event play back over and over.........weird.

As I sit here typing, I am compelled to tell you how I feel today.  I am feeling guilty because I did not make it to Church in several weeks, I have been exhausted.  I miss the service.

My tummy hurts so bad, like the band of my undergarments is too much to bear.  I am now wearing my TENS unit to ease the pain.

I desperately miss my family today.....and just realized that I am one of those people who needs me to be a joyful customer service agent.

I work from home and talk to people in the evenings about their problems with their products or what have you.  I love that because I get to talk to people..........

Yesterday I got lost on the way to a cognitive rehabilitation study class..........I was tweeked about not having a map, and felt set up to fail.  This is crazy of course, but anyway.......and thankfully got errands ran with mom before the storm hit today.

My hands are still swollen, but I did do some exercise this past week.

The only noise in the apartment is either the dryer winding around and around, or intermittent EWTN.  My cable is slow, and I have no live TV, except for KIRO TV news.

It's very odd to have no live TV.  It really is.

So I can't figure out if I'm depressed, run down, both or what.  Maybe I need to lay off the "24" reruns from ROKU/Amazon.

I think a kitty would help, but where oh where to place the box.

Thank you God for gifting my Uncle with 65 years of life and for helping my mom continue her dialysis.  For protecting my cousin Shaun from the wrath of cancer and for giving me a chance to be here.  I got to speak with my niece and nephew from Colorado, and my brother......got a call from my aunt and even got a call from a cousin in Colorado. She kinda sounds like me on the phone...........just noticed that.........hmm.

May the snows of tomorrow provide joy and no harm.  I love you all.

Love,
Denise

Cancer statistics, 2012 - Siegel - 2012 - CA: A Cancer Journal for Clinicians - Wiley Online Library

Cancer statistics, 2012 - Siegel - 2012 - CA: A Cancer Journal for Clinicians - Wiley Online Library

When will we stop patronizing the tobacco companies? Here is a new report on Cancer statistics, for those of you who like this kind of stuff. I don't like to look at statistics, because I don't want to be one. None the less, I am one, so I need to at least keep myself informed. No statistic has the power to rule your will and your love for live.

What I see here is that sadly, lung cancer still tops the list as the leading cause of cancer death.

Regarding ovarian cancer, it is commonly believed that our "new cases" stat is lower than what actually is true because it is still usually detected at later stages. So if all the early stage cases were found, we'd probably have more cases but also more survivors!!!!!

Peace,

Denise

Resources for our teal sisters, can you help?

I am a proud member of the Inspire.com community, a resource that brings people together.  Our ovarian group is in need of information about all resources that could help some of our sisters in need.  Although most of our sisters have loving family to support them or help during this crisis, many do not.  I was so blessed to have my family help me and cannot image going through this alone.


If you know of anything, local or otherwise, please send me information and I can give it to the group.


The hard part about using resources is first locating them, organizing them and then all the paperwork to apply for help.  Many ladies are in need.  We can do more.


Thank you followers...................


Resources from simple searches.............................

http://copingmag.com/cwc/index.php/resources/new_resources

http://www.cancersupportcommunity.org/mm/Learn-About/cancertype/Ovarian-Can cer/Resources-- 
http://www.ovariancancer.org/about-ovarian-cancer/introduction/

http://www.colo-ovariancancer.org/cancer_resources

http://www.cancerlinksusa.com/ovary/index.asp

http://www.northshorelij.com/NSLIJ/Cancer+Resources+on+the+Web_CI

http://www.michigancancer.org/Resources/FinancialResources.cfm

http://www.ontopofcancer.org/ovarian_cancer_financial_insurance_legal_drug. php

http://carycancercenter.org/PatientSupport/FinancialResources.aspx

http://ovariancancer.com/app/index.php?pid=11

http://www.ocao.org/partner_resources.aspx

http://www.facingourrisk.org/info_research/finding-health-care/financial-he lp/index.php

http://www.mfocf.com/

http://ovariancancer.about.com/od/livingwithcancer/a/ovca_assistance.htm

http://www.colo-ovariancancer.org/financial-resources

http://www.cancerlinksusa.com/financial_aid.htm

https://www.navigatingcancer.com/?ref=header

http://healthinfoispower.wordpress.com/ovarian-cancer-resources/

http://www.cancerindex.org/clinks3o.htm

http://www.health.ny.gov/diseases/cancer/ovarian/resources/groups.htm

http://www.ovationsforthecure.org/aware/aware_resources.php

http://www.sharecancersupport.org/

http://www.cancerindex.org/clinks3o.htm

http://www.mylifeline.org/

http://www.patientresource.net/?gclid=CIeBmcqrwq0CFcoaQgod-E4E-w

http://www.cancer.org/cancer/ovariancancer/index?gclid=CPe6mr-rwq0CFQR5hwod VwOn_g

http://connect.caringbridge.org/gp/cancer_dual?g=GoogleP&an=Cancer+Support+ Free&k=cancer%20support%20groups&gclid=CIeuor2rwq0CFRRZhwodUB5NAw

http://www.seattlecca.org/diseases/ovarian-cancer-resources.cfm

http://www.medscape.com/resource/ovarian-cancer

http://www.onconurse.com/factsheets/ovarian.html

http://www.ovarian-news.org/resources.html

http://www.cancer.gov/cancertopics/types/ovarian

http://www.cancercare.org/diagnosis/ovarian_cancer

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CMj3k4urwq0CFc YbQgoddTY3Ag

http://www.cancerandcareers.org/en

http://www.cancerlifeline.org/

http://www.dshs.wa.gov/dvr/Default.aspx

http://www.marsharivkin.org/

http://www.needhelppayingbills.com/index.html

https://livestrong-intake-form.heroku.com/page/1/

http://cancersensibilityfoundation.org/

http://beingcancer.net/

http://www.cancercopayrelief.org/


Maybe one of these will make a big difference for each of us. Peace and Blessings. Love, Denise

Happy New Year

I am listening quietly to the fireworks off in the distance.  I have no other noise in the background and it's so peaceful.  It is 12:47 am on January 1, 2012.  WOW

I think about you all the time, my loyal followers, who keep an interest in my progress.  I am so humbled.

You can survive ovarian cancer.  

What I had learned this past 2011 was that we need to push beyond our comfort zone, even when it hurts and even when we don't agree, because we must keep moving forward.  We must never stop moving forward. 

Never ever ever.

2011 was a very challenging year because this was the year that I had to move beyond the "cuddle zone" and get my life started again.  The physical pains, cognitive voids and emotional fears and hot zones are here to stay, but my love for God and my family grows stronger every day.

I have total and complete faith that what is, is as it should be.  I am here in this spot at this time.  For now.

I never would have made it through my valleys if I had been denied somehow the honor of having my blogger family support.  You are my link to share my innermost feelings, fears, joys and hopes.  My heart is filled with joy.

Thank you for your loyalty and care.

May God bring you deep joy, prosperity and health in 2012.

Keep your faith and grab onto hope with all your might.

Love, 

Denise