Nobody Has Ovarian Cancer

Did you get your bi-manual screening today?

2012-02-10T16:04:00.000-08:00

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

2012-02-04T16:36:00.000-08:00

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

2012-01-25T15:46:00.000-08:00

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

2012-01-24T00:21:00.000-08:00

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

2012-01-23T00:21:00.000-08:00

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

2012-01-18T16:58:00.000-08:00

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..............................

2012-01-15T21:56:00.000-08:00

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

2012-01-11T01:20:00.000-08:00

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?

2012-01-08T23:44:00.000-08:00

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

2012-01-01T01:00:00.000-08:00

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

Oh Christmas Tree.........

2011-12-19T01:34:00.000-08:00

My Teal Starred Christmas Tree is literally my little work of art. I had no desire to get a fake tree and the price of a real tree was a wee bit over the limit this year. I am in love with bamboo and came up with a crazy idea to get some red colored bamboo and create my own tree. Up at the top is a Teal star, it glitters and makes me smile. The lights in the center flicker, and it resembles a heart, beating with joy.

My favorite holiday is really Christmas. I love I love I love Christmas. I love the LOVE that sort of lingers in the atmosphere. I'm not going to rattle on and on about why do we focus on doing good deeds just during the holidays, when it needs to be every day.......I just feel like talking a bit.

Like most people, my family is scattered from here to there and we will be celebrating Christmas several times this year. I remember the times long ago, maybe life was much simpler and less frenzied. Our family, like most, has it's share of changes and griefs, and every year it seems it gets harder and harder to see everyone and do all the things you want because we have less time. I just want to shut down for a few weeks and feel the grace of LOVE, be Love, and Rejoice in the coming of the Lord.

Oh well, that's me. If nothing else, a daily siesta to take in the magic would be marvelous.

I do have something on my list this year, besides world peace and a cure for cancer. It has to do with the homeless. My heart aches always when I see that a person has no shelter. How can this be?

Please send up a prayer for them. Pray that someone in their family thinks of them and tries to find them. Pray that they find their way home. Pray that they get the medical attention they need and that they can find a home. It takes an incredible amount of resources to bring anyone from homelessness to working and living a decent life. But it's possible. These lost souls have someone who loves them who can do something to help. If you have some food or a way to help them find shelter, please don't be afraid to help.

I always give what I can when I see a homeless person. They are so alone, especially at this time of year.

I am so thankful to God to be present this year, 2011. I am thankful to God for granting me health care, and for answering prayers for others in my family. Our family has been hit pretty hard this year with medical challenges, and we need a break. Thank you God.

I want to honor all of you who take a moment to listen every now and then, to tell you that I pray, in this time of Holiness, no matter your faith or beliefs, that you are blessed with health, security, love and hope.

Peace and Blessings to each of you this Holy Season.

Love,
Denise

Thomas Merton Prayer

2011-12-06T23:19:00.001-08:00

THOMAS MERTON (1915-1968)

The Merton Prayer

In Thoughts in Solitude, Part Two, Chapter II consists of fifteen lines that have become known as "the Merton Prayer."

MY LORD GOD, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

- Thomas Merton, "Thoughts in Solitude"
© Abbey of Gethsemani

Thomas Merton came to me in the form of an educational booklet at the SCCA. On a day when I needed help to know that I was moving in the right direction, far from perfect, and just needing to feel love, this prayer was sent to me. It resonates with me and I think with most people.

Faith does not present itself as a provable absolute, but it does present as a deep sense of knowing we are accountable to more than just ourselves.

His parents died of cancer and he struggled to find God. I ask you to read a bit about him and pray that as this Christmas Season continues that you find more peace and faith in your heart.

http://www.mertoninstitute.org/aboutThomasMerton/tabid/57/Default.aspx

"When Cancer Hits Home" by Dr. Patrick Maguire

2011-11-19T12:55:00.001-08:00

"When Cancer Hits Home" by Dr. Patrick Maguire

Hello to my blogger family. I hope all is well and that the sun shines brightly in your heart today.

I wanted to share with you a wonderful resource that helps people navigate the minefields of cancer-land. It's called "When Cancer Hits Home" by Dr. Patrick Maguire. I was honored to have had the opportunity to ask Dr. Maguire a few questions about Ovarian Cancer.

Dr. Maguire's book is detailed and yet broad enough to include information on many forms of cancer. All of us are damaged by cancer. Either we have it or love someone who has or is battling cancer. Hopefully we are looking in the mirror and saying we beat it, but sadly that is not always the case.

When I was diagnosed with ovarian cancer, research was frightening. My family and I were thrown into research mode and it was very stressful. Searching within the internet, contacting cancer resource centers, helping me ask questions. I was constantly on the computer. When I went to my local library there was only ONE book on ovarian cancer! We were overrun, beaten and confused by hunting for reliable and accurate, and mostly hopeful information.

"When Cancer Hits Home" provides a much needed guide as we enter this deep and often dark path towards treatment.

Here are the questions I had asked with the help of his publisher.

Thank you Dr. Maguire for taking time to share your thoughts and expertise with me in the hopes that others can benefit from your work and your book.

Peace

1. Is Dr. Maguire willing to tell us details about current medical training for PCPs on Ovarian Cancer? What kind of training do our medical students receive?

Most medical students' training in oncology is limited overall. Generally, third and fourth year med students learn from patients who have cancer during their internal medicine, surgical, and sometimes ob/gyn rotations. At major medical centers, students may choose an elective experience in medical, radiation, or surgical oncology including gyn onc. Interactions with patients who have ovarian cancer would be limited to these experiences for the most part. Since most primary care physicians are trained in internal medicine and family practice, their knowledge base and experience with ovarian cancer would also be limited. Most general gynecologists should have at least basic knowledge of ovarian cancer and interacting with patients in this regard, since they spend time during residency training specifically with gynecologic oncologists treating female cancers.

2. The trend seems to be to eventually divert gynecological follow-up back to a regular OBGYN when an OC survivor is in remission. What is Dr. Maguire's position on this trend?

Because ovarian cancer is generally found when advanced and has high risk of recurring/returning, immediate follow-up for at least the first few years should be with a gyn oncologist rather than general gynecologist in my opinion. When likelihood of cancer returning starts to decrease after few years, it's not unreasonable for patients to change their follow-up care back to their general gynecologist if more convenient and they are comfortable with gynecologists' handling of their survivorship plan.

3. How can we teach family members and caregivers and even doctors and social workers about the chronic side effects of TAH-BSO and chemo? (total abdominal hysterectomy, bilateral salpingo-oopherectomy)

Because ovarian cancer is both less common and more deadly than breast cancer, for instance, general medical providers as well as the public have less understanding of the disease, its treatment, and potential long-term side effects. Patients, their families, and other advocates will need to continue to be vocal in this regard to spread the word and teach others (& get more research dollars for the cause!).

4. Does he recommend clinical trials for women who are in remission?

I am a vocal proponent of clinical trials in general, because I firmly believe they're the best way to rapidly advance our understanding of cancer, its treatment, and move towards a cure. While most clinical trials are geared toward improving methods of treatment, there are many "symptom management" trials open for cancer survivors that can be quite beneficial. I usually tell my patients who are candidates for a clinical trial that "it may help you, and will definitely help future patients."

5. How does a woman with ovarian cancer know she has a good gynecological oncologist? What are the signs?

In When Cancer Hits Home as well as my new eBooks, Empowered Against Breast Cancer and Empowered Against Prostate Cancer, I discuss the "Three C's of a Good Cancer Doctor." They are competence, compassion, and communication. Even gyn onc surgeons need to have all three C's to rate as good doctors in my book!

6. Any other advice?

Raising awareness about ovarian cancer is critical because in cancer research, as in many aspects of life, "the squeaky wheel often gets the grease." It's no coincidence that dramatic advances in breast cancer have occurred during the past several decades of excellent funding of laboratory research, clinical trials, etc. While potentially more challenging for ovarian cancer, I'd like to see more rapid advancement of less toxic treatment options and an effective screening test for the disease. You are advancing that cause right now, which is very valuable!

Parick Maguire, MD

http://www.amazon.com/dp/0615391117/ref=rdr_ext_tmb

( I do not receive any payments from this link, I am just sharing it for your benefit in case you want to buy the book............Denise Peace, Love and Blessings to all)

Land of the Lost

2011-11-10T14:11:00.001-08:00

Does anyone remember the first Saturday morning TV show called the "Land of the Lost"? It opened with a dad and his two kids on a raft going down a waterfall and arriving in a land of ancient times. Dinosaurs and reptiles and really big strawberries abound! I feel like I am in the land of the "lost" still. I know I've been harping on this chemo brain stuff but it's really annoying me.

First of all, every time I go to see my counselor, I get lost on the way there. And to make it worse, because I just moved, I go in the wrong direction all the time.

This IS Seattle though, so I don't take all the blame. For those of you who don't know what it's like to drive in Seattle, it's a maze. There are a lot of lakes and bridges and hills and there are no grids out here. Streets are windy and go in all directions............so anyway.

I had another cognitive test done at Fred Hutchinson a few days ago, got lost on the way there, got lost in the building, and I've been to that campus only a million times.

Had to go downtown last night for work training, got lost on the way there, got lost on the way home.

I am having trouble with my new job because I can't remember how to search on their computer to research answers and solutions and information for my clients. That is really worrisome for me...........not good.

It's so hard to explain that I can't "find' information quickly.......and then I forget how I got there.

It's like the homing device in my brain went kerplunk. I'm sure there's a specific part of our brain that recalls visual tracking, I should remember that, but I don't.

Before chemo, my directional memory was awesome. I am not gloating. I used to drive all over the place and rarely got lost. Plus, at work I was the person other's relied upon to remember appointments and important deadlines, etc. I was a super organized person.

Now, I can't remember to make my to do list and when I make my to do list, I forget to use it. Crazy.

Then, oddly enough, during the test, I was good at remembering numbers. Weird.

I guess my concern is really about being able to stay in a good standing at work. I had no idea that I would have such a hard time learning new things. I was such a good student in college, and was able to memorize all kinds of things, no matter what kind of job I had. I even did some community theatre for a bit, and that required an above average memory. Sooooooooooo, all I can say is that chemo did a number on my noggin'.

I do have hope though that this will continue to improve over time. But if I forget to do something or forget a name or forget an event, please forgive me. I am not offended by reminders either, and welcome them as a matter of fact.

Like, the other day, after my cognitive testing, I met with a teal sister for coffee before getting mom at dialysis. My friend asked me how my day was and I couldn't remember where I had been. I laughed and said "I don't remember............wait..........oh ...........This is funny but I forgot that I went to do a memory test this morning". I just laugh at myself now, but when it comes to work, that isn't funny..........aagh

Life could be worse...................I love you all!!!!!!!!!!!!!!!!!!!!!!!!!

Brain image compliments of http://www.pbs.org/

Something creative and beautiful

2011-11-04T08:28:00.000-07:00

Here is a link to an Art Tutorial created by my sister. I am so proud of her. I thought I'd share something that brings joy today. We all need art in our daily lives. Art creates emotions and gives us life! Art speaks truth. Peace.

http://poppytalk.blogspot.com/2011/10/art-tutorial-drink-up-these-kitchen.html

I love you sis!

From NEJM on Drug shortages

2011-11-02T23:20:00.000-07:00

Perspective

The Shortage of Essential Chemotherapy Drugs in the United States

Mandy L. Gatesman, Pharm.D., and Thomas J. Smith, M.D.

N Engl J Med 2011; 365:1653-1655November 3, 2011

Comments open through November 9, 2011

Article
References
Comments (8): For the first time in the United States, some essential chemotherapy drugs are in short supply. Most are generic drugs that have been used for years in childhood leukemia and curable cancers — vincristine, methotrexate, leucovorin, cytarabine, doxorubicin, bleomycin, and paclitaxel.1 The shortages have caused serious concerns about safety, cost, and availability of lifesaving treatments. In a survey from the Institute for Safe Medication Practices, 25% of clinicians indicated that an error had occurred at their site because of drug shortages. Many of these errors were attributed to inexperience with alternative products — for instance, incorrect administration of levoleucovorin (Fusilev) when used as a substitute for leucovorin or use of a 1000-mg vial of cytarabine instead of the usual 500-mg one, resulting in an overdose. Most cancer centers quadruple-check drugs for accuracy, and we're unaware of any documented death of a patient with cancer such as the nine deaths in Alabama attributable to the use of locally compounded liquid nutrition because the sterile product was not available. However, it is only a matter of time.
These shortages have increased the already escalating costs of cancer care. Brand-name substitutes for generic drugs can add substantial cost. For instance, Abraxane, a protein-bound version of paclitaxel, costs 19 times as much as equally effective generic paclitaxel (see tableAverage Wholesale Prices (AWPs) of Selected Oncology Drugs in Short Supply and Their Potential Alternatives.). Since 2010, health care labor costs in the United States have increased by about $216 million because of the increased time and work required to manage drug shortages.2 A gray market for essential drugs — an unofficial alternative market of drugs obtained by vendors outside the usual distribution networks — has grown rapidly, with unregulated vendors charging markups of up to 3000% for cancer drugs.
The main cause of drug shortages is economic. If manufacturers don't make enough profit, they won't make generic drugs. There have been some manufacturing problems, but manufacturers are not required to report any reasons or timetable for discontinuing a product. Contamination and shortages of raw materials probably account for less than 10% of the shortages. In addition, if a brand-name drug with a higher profit margin is available, a manufacturer may stop producing its generic. For instance, leucovorin has been available from several manufacturers since 1952. In 2008, levoleucovorin, the active l-isomer of leucovorin, was approved by the Food and Drug Administration. It was reportedly no more effective than leucovorin and 58 times as expensive, but its use grew rapidly. Eight months later, a widespread shortage of leucovorin was reported.
The second economic cause of shortages is that oncologists have less incentive to administer generics than brand-name drugs. Unlike other drugs, chemotherapeutics are bought and sold in the doctor's office — a practice that originated 40 years ago, when only oncologists would handle such toxic substances and the drugs were relatively cheap. A business model evolved in which oncologists bought low and sold high to support their practice and maximize financial margins. Oncologists buy drugs from wholesalers, mark them up, and sell them to patients (or insurers) in the office. Since medical oncology is a cognitive specialty lacking associated procedures, without drug sales, oncologists' salaries would be lower than geriatricians'. In recent decades, oncology-drug prices have skyrocketed, and today more than half the revenue of an oncology office may come from chemotherapy sales, which boost oncologists' salaries and support expanding hospital cancer centers.
Before 2003, Medicare reimbursed 95% of the average wholesale price — an unregulated price set by manufacturers — whereas oncologists paid 66 to 88% of that price and thus received $1.6 billion annually in overpayments.3 To blunt unsustainable cost increases, the Medicare Modernization Act mandated that the Centers for Medicare and Medicaid Services (CMS) set reimbursement at the average sales price plus a 6% markup to cover practice costs. This policy has reduced not only drug payments but also demand for generics. In some cases, the reimbursement is less than the cost of administration. For instance, the price of a vial of carboplatin has fallen from $125 to $3.50, making the 6% payment trivial. So some oncologists switched to higher-margin brand-name drugs.4Why use paclitaxel (and receive 6% of $312) when you can use Abraxane (for 6% of $5,824)?
Now practices are struggling to treat their patients because of the unavailability of drugs. Short-term solutions include gray-market purchases, which more than half of surveyed hospitals say they've made, but that option introduces safety and quality-control issues. Pharmacists are intensively managing inventories and alerting prescribers to developing shortages and potential alternatives. Some centers now have a red–yellow–green system for quickly recognizing developing shortages and determining which patients get priority (usually those with curable cancers) when supply is limited.
Long-term, non–market-based solutions have been elusive. Proposed legislation would require manufacturers to give 3 to 6 months' notice before discontinuing a drug in order to allow others to pick up production. However, it is likely that gray-market vendors would buy the remaining inventory of such drugs and charge huge markups. Creating a national stockpile is impractical: Do we stockpile the drugs and then waste whatever is not used or stockpile the ingredients and make new batches as needed? A national health care plan with a single formulary and a central pharmacy stockpile is possible for Medicare or Veterans Affairs but unrealistic given oncologists' dependence on drug income and difficulties with timely, safe distribution.
Market solutions take one of two approaches: let the market work and accept short-term uncertainties or regulate the market more tightly. For instance, the CMS could reimburse at the average sales price plus 30%, but that wouldn't help if the drug price has fallen from $125 to $3.50 per vial. The government could set a floor for average sales prices to encourage the production of generic drugs, but that would increase the total cost of cancer drugs unless brand-name prices were reduced. Europe has fewer shortages for that reason: prices are set higher for generics so that companies will make them, but prices of brand-name drugs are often much lower than U.S. prices.
More far-reaching reforms of oncology practices and reimbursement are necessary if there is no national intervention or federal market regulation. One solution is adopting clinical pathways for which practices are paid disease-management fees that are not based on chemotherapy sales. For instance, one large oncology group has developed care pathways specifying preferred drug combinations and sequences — for example, allowing only a few first-line, mostly generic regimens for patients with non–small-cell lung cancer, as compared with the 16 possible drugs and many more combinations included in National Comprehensive Cancer Network pathways. This approach has been shown to result in equal or better survival, less use of chemotherapy near the end of life, and 35% lower costs than usual care.5 Another solution is to pay physicians salaries, as Kaiser Permanente, Veterans Affairs, and most academic centers do, but that would reduce oncologists' earnings at a time when a 40% workforce shortage is predicted, so the effect must be monitored.
To ensure a predictable supply of generic cancer drugs, manufacturers need reasonable markets and profits, and oncologists need incentives to use generics. Standardized clinical pathways with drug choices based only on effectiveness will enable the prediction of drug needs, practices for effective management of inventory, and planning by manufacturers for adequate production. Such pathways, disease-management fees, and physician salaries would dramatically change oncologic practice, but since drug costs will increase by 4 to 6% this year alone, they are necessary. The current system not only is unsustainable but also puts oncologists in potential ethical conflict with patients, since it hides revenue information that might influence drug choices and thus affects costs and patients' copayments.
The only good news is that the drug shortages may catalyze a shift from a mostly market-based system to one that rewards the provision of high-quality cancer care at an affordable cost.
Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.
This article (10.1056/NEJMp1109772) was published on October 31, 2011, and updated on November 2, 2011, at NEJM.org.
SOURCE INFORMATION
From the Virginia Commonwealth University Health System, Richmond (M.L.G.); and the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins Medicine, Baltimore (T.J.S.).

Cancerland is One Big Game of Pac Man

2011-11-01T14:12:00.000-07:00

Fascinating research given to me by one of my teal sisters on how fatty tissue and omentum fuel cancer. Anyone effected by cancer needs to read this!

http://www.eurasiareview.com/30102011-fat-cells-in-abdomen-fuel-spread-of-ovarian-cancer/

A Rebirth and a new place

2011-10-22T11:11:00.000-07:00

It's been a while since I shared news about my status. My apologies as I have been moving, and well, I'm tired. Lot's of emotions moving out of my dear mom's home into an empty apartment. But it was time, and mom really wanted this for me. Love you mom.

Every morning for the past two years mom and I would enjoy our coffee together and catch up on the news. I would eat my oatmeal and for two hours or so, life was heavenly. Even if I was in pain or tired from chemo, we would still enjoy that time together. I would get to hear tid bits of stories from long ago about her childhood, or a rant about something important politically in the world. Mom holds back on nothing.

I really didn't want to leave, especially now that she is on dialysis. The house is too small and her plate is full with questions, worries, and concerns for her future. She needs time and space for peace now. I see her a lot anyway, so it won't be too bad. I just really miss her so much.

Now I'm in a secure apartment managed by a very kind woman who thinks of this complex as a community. I like that. I will include a photo in my blog when I get my furniture and pictures arranged. I found a small wooden table as a give-away, and am using that for my dining table. Mom was so generous to give me one of her couches and a living room side chair. My sister and her husband helped me move, thank you guys!!!!

It feels like a dorm room right now, not really homey.

Thanks to comcast and their evil doings, I have no television. I'm trying to look at this lack of television as an opportunity to reflect and pray more. It's probably a good thing at the end of the day. I miss my CNN and Hoda and Kathy though. No cooking channel, what's a girl to do? Ha. Thanks to Pat and Mandy for offering Hulu to help with the TV.....yaaaaaaaaaaaaaaaaaaaaaaaaay!

I just found out my niece passed a black belt flip test last night...............yaaaaaaaaaaaaaaaaaaaaay. Later today I hope to see my other niece at a performance in the zoo. The rest of the family is well overall, I wish we all lived in the same area, like when we were little kids. I really do.

On the medical front, my CA125 is 11 and my latest exam was normal. In 3 months I have a pelvic CT scan. My mammogram and breast MRI are good too, but I'm still seeking the opinion of a surgeon to consider a prophylactic mastectomy. Sigh. Still totally undecided, I just want to talk.

That's all for now. I really hope you are well. Peace and blessings and hugs and smiles to you.

Steve Jobs 1955-2011

2011-10-06T08:21:00.000-07:00

This brilliant man died yesterday fighting a never ending battle with cancer and the health complications of his war. Cancer steals our souls, our hearts, our minds.

We must actually find a cure, not some sort of palliative medication that allows us to "live with cancer as a chronic condition".

I'm sorry, I don't want to dampen our hopes or be "negative". I'm just being real.

I don't want cancer to become a chronic disease. It needs to remain a disease to be cured!!!!!!!

Every single person on this planet carries equal value and importance, but few of us actually soar above the flock and really make a true, positive difference for the masses. Steve Jobs was an individual who's vision changed the way the world communicates.

For the fleeting moment along the spectrum of time wherein each of us breathes God's sweet air, we must strive to do only good. When drug companies decide to desire to do good, we will find a cure for cancer.

Peace, Blessings and condolences to the Jobs Family and people at Apple.

Steve Jobs, Rest in Peace

Join Yale University to do the WALC-N Study

2011-10-04T11:01:00.000-07:00

Hello Teal Family,

I am grateful to be participating in a very important study, about walking and our health as women who have experienced the wrath of ovarian cancer. If you, or any woman you know, is interested in participating in this very important study, please contact Yale University. This is a fully randomized study.

Please forward this to all of your teal sisters. There is no other study of this nature being offered in the Ovarian Cancer community. Your participation could save a life.

From WALC-N Study at Yale University:

We are inviting women diagnosed with ovarian cancer andliving anywhere in the USA to participate in the

WALC-N Study (soundslike “walking”).

This research study will examine if a 6-month home-based walking program, with weekly phone calls and counseling from ourcertified personal trainer, will improve quality of life, fatigue and otherovarian cancer outcomes.

http://publichealth.yale.edu/people/melinda_irwin.profile

2011-09-30T16:45:00.000-07:00

This is my dear mom. Looking at her in this photo I see the true spirit of my mother. She has in her hands my sister's Sketchbook Project booklet http://weatheredsilo.blogspot.com/2010/12/my-sketchbook-final-entry.html Mandy is such a natural artist, as is my mom. Even my brother is greatly talented. My mom loves art. In this candid moment I see her sincere deep joy in seeing my sister's works, and just being so so so happy for Mandy.

I am here to witness this joy! I am here to participate in life and be with my family. There is no greater joy to me, other than my reverence to our dear Lord, than to be with my family. All of my family, which includes you.

Thank you all for supporting Ovarian Cancer Awareness month, and a shout out to Tammy G. for wearing her teal shirt as she holds her precious daughter Lila.

The point of this post is that I could have missed this moment, but I didn't. Thank you God.

Love,
Denise

Dr. Oz and the test you can take to your doctor

2011-09-14T13:23:00.000-07:00

Dr. Oz is a champion in the campaign to "Break the Silence on Ovarian Cancer" These images are selected from www.doctoroz.com. Dr. Goff of the Seattle Cancer Care Alliance appeared on his show and is a re-assuring presence in this fearful arena of OC.

Please visit his website to learn about the lifesaving measures we can take to prevent Ovarian Cancer from growing out of control

http://www.doctoroz.com/videos/5-ovarian-cancer-warning-signs-pt-1?hs317=billboard_3

There is nothing I can personally add to this informative program accept to say that I wish my gynecologists and PCP from my pre-OC life were paying attention. Don't let your doctor fall asleep at the wheel.

Beauty in my Sister's Paintings

2011-09-12T17:41:00.000-07:00

WEATHERED SILO

taking the mother rd 150.00 buy	waiting 150.00 buy	worldly possessions 150.00 buy	fryin' pone 150.00 buy
ruthie's red 150.00 buy	faded clover 150.00 buy	taking the mother rd 30.00 buy	waiting $30.00 buy
worldly possessions $30.00 buy	fryin' pone $30.00 buy	ruthie's red $30.00 buy	faded clover $30.00 buy

WEATHERED SILO

profile:

I am THRILLED to be participating in Poppytalk Handmade alongside so many talented artists. I invite you to view my latest collection of acrylic paintings and limited edition giclée prints from my DUST BOWL GLIMPSES series.

I live with my family in Seattle and have an affinity for the old ways. When creating my shop name I immediately thought of my great-grandparents and their parents who homesteaded in the early 1900s on the prairies of Kansas, Colorado, and New Mexico. "weathered silo" pays tribute to my ancestor's resilience and resourceful ways of living off the sometimes unforgiving land and it's untamed beauty.

I look forward to meeting you. Cheers, Mandy

shop:

http://www.etsy.com/shop/weatheredsilo

website:

http://weatheredsilo.blogspot.com/

twitter:

http://twitter.com/weatheredsilo

http://www.poppytalkhandmade.com/table15

Mom I admire you

2011-09-09T10:30:00.000-07:00

I have been asked many times by my Seattle doctors, and recently a psychologist, to identify what really kept me going every day. It is not easy to identify the force that drives us to live, even when we are healthy. When we are healthy, we wake up and live our lives.

We go to sleep and start over the next day. "Living" is up to God and is not in our control, but the "will" to live comes from another place. I always look to God and find that the people around me give me the desire to keep going.

My mom was and remains a driving force behind my will to traverse the path of a new life, even when I just want to quit. I'm in a tough spot, and need to get an actual life started again. It's more about resources. I have none....ha! I just have to think positive and believe that I will be able to take care of myself financially. That's all I can do.

My mom believes that I will make it.

Although my mom has started dialysis, she is determined to remain independent and that means that I am being requested to keep looking for a new place and resume some sort of life, after cancer.

I could stay here forever, because I want to be here if she needs something. She is so strong. I will miss her so much when I move out.

My mom is AMAZING. She is more driven and determined and motivated to live than anyone I know. She is a Type I diabetic, has been for over 40 years. Usually Type I diabetics need to start dialysis after 20 years, but my mom has taken such good care of herself that she has been able to wait 40 years.

She has to work to keep herself alive every day, maintaining her insulin pump, checking her blood sugars, watching every calorie, and type of food. Now that she's started dialysis, we find ourselves spending 15 hours a week at a treatment center and she is hooked up to a machine that cleans her blood.

This is her new life, machine one and machine two (insulin pump and dialysis). If she decides to stop connecting herself to either machine, she will die.

So she wills herself every day to connect to a machine, and live. She too has pain, and complications, but just keeps on keeping on.

She is so forgiving, so forgiving. Puts me to shame. One of her doctors could have given her a little better advice and it caused her some problems, but that is over now and she is just moving forward.

God asks us to be forgiving and love our neighbors. I believe that God uses people around us to talk to us in subtle ways, and we need to just listen. Be quiet, and alert, and open to the cues.

There are many other people in my life, family and friends, who give me "will" to keep going to find my new life, but I just wanted to spend a little time talking about mom.

She is an artist, a debater, an activist, a rebel, a great caregiver, and a great grandmother. Her creativity is endless and she is passionate about all people having equal opportunity and that all humans are treated with dignity. She is so intelligent, and strong-willed. She is very loving.

I love you mom.

Denise

Direct from President Obama on Ovarian Cancer Awareness Month

2011-09-02T12:39:00.000-07:00

The White House

Office of the Press Secretary

For Immediate Release

September 01, 2011

Presidential Proclamation--National Ovarian Cancer Awareness Month

NATIONAL OVARIAN CANCER AWARENESS MONTH, 2011

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Ovarian cancer continues to have one of the highest mortality rates of any cancer, and it is a leading cause of cancer deaths among women in the United States. This month, we remember the mothers, sisters, and daughters we have lost to ovarian cancer, and we extend our support to those living with this disease. We also reaffirm our commitment to raising awareness about ovarian cancer, and to advancing our screening and treatment capabilities for the thousands of American women who will be diagnosed this year.

Ovarian cancer touches women of all backgrounds and ages. Because of a lack of early symptoms and effective screening tests, ovarian cancer is often not detected in time for successful interventions. It is crucial that women know how to recognize the warning signs of gynecological cancers and can detect the disease as early as possible. I encourage all women to learn about risk factors, including family history, and to discuss possible symptoms, including abdominal pain, with their doctor. Now, because of the Affordable Care Act, a wide range of preventive screenings are available to women without any copayments, deductibles, or coinsurance.

My Administration is committed to supporting the women, families, and professionals working to end this disease. The Centers for Disease Control and Prevention and the Department of Health and Human Services have started a campaign to educate women on cancers affecting reproductive organs. The National Cancer Institute is researching new ways to detect ovarian cancer, publishing a comprehensive study of the most aggressive types of ovarian cancer, and conducting clinical trials for new combinations of therapy. And this year, agencies across the Federal Government, from the National Institutes of Health to the Department of Defense, have committed to supporting ovarian cancer prevention and treatment research.

So many lives have been touched by ovarian cancer -- from the women who fight this disease, to the families who join their loved ones in fighting their battle. In the memory of all the brave women who have lost their lives to ovarian cancer, and in support of generations of women to come, let us recommit to reaching a safer, healthier future for all our citizens.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2011 as National Ovarian Cancer Awareness Month. I call upon citizens, government agencies, organizations, health-care providers, and research institutions to raise ovarian cancer awareness and continue helping Americans live longer, healthier lives. And I urge women across the country to talk to their health-care providers and learn more about this disease.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of September, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

DEAR PRESIDENT OBAMA, THANK YOU WITH ALL MY HEART
DENISE ARCHULETA

Thank you Ovations for the Cure for letting us know
http://www.ovationsforthecure.org/

Turn Facebook Teal to Heal in September

2011-08-29T13:33:00.000-07:00

Red Alert!!!!!

I am asking Mark Zuckerberg to turn Facebook Teal in September!!!! Please help me. Here is a link to a discussion on his public profile page.

https://www.facebook.com/topic.php?uid=68310606562&topic=33687

Please also "like" my page in Facebook! Even if we get one day, one is better than none!
Save the life of a daughter, a mom, a sister!

http://www.facebook.com/pages/Teal-to-Heal-Pages-in-September/192324557499518

Ovarian cancer

Causes, incidence, and risk factors

Ovarian cancer is the fifth most common cancer among women.

Symptoms

Ovarian cancer symptoms are often vague. Women and their doctors often blame the

symptoms on other, more common conditions. By the time the cancer is diagnosed, the

tumor has often spread beyond the ovaries.

You should see your doctor if you have the following symptoms on a daily basis

for more than a few weeks:

Bloating

Difficulty eating or feeling full quickly

Pelvic or abdominal pain

Other symptoms are also seen with ovarian cancer.

However, these symptoms are also common in women who do not have cancer:

Abnormal menstrual cycles

Digestive symptoms:

Constipation
Increased gas
Indigestion
Lack of appetite
Nausea and vomiting

Sense of pelvic heaviness

Swollen abdomen or belly

Unexplained back pain that worsens over time

Vaginal bleeding

Vague lower abdominal discomfort

Weight gain or loss

Other symptoms that can occur with this disease:

Excessive hair growth

Increased urinary frequency or urgency

Something simply beautiful for a change

2011-08-28T19:45:00.000-07:00

Take a moment to breathe in and delight in the beauty of Mandy's special works of art. So precious.

http://www.etsy.com/shop/weatheredsilo?ref=pr_shop

weathered silo (2)

Peace to all,

Love,
Denise

Guest post from David Haas

2011-08-23T10:05:00.000-07:00

Hello friends, I have posted an article by David Haas on the benefits of exercise when you have cancer. I can fully appreciate the importance. Before cancer I was walking two miles a day. Chemo steals your soul, but only for a little while. As the chemo fades, the ability to do more increases over time. Thank you David for your well written article.
Peace and blessings, Denise

Cancer Patients Can Benefit From Exercise

It is a great accomplishment to survive cancer and the main priority for most cancer survivors is to keep the cancer from returning. Current research points to the fact that exercise can benefit cancer patients.

If you have traveled down the long road of cancer treatments for any type of cancer including but not limited to colon cancer, breast cancer, or even a rare and aggressive disease like mesothelioma, or any other type of cancer, you are probably searching for ways that can help you stay healthy. Exercise for cancer patients has been shown by research to help cancer patients create a longer life expectancy when there is a grim prognosis, and even helps the body fight the chance of recurrence if they have already pushed the disease away. In several different studies, it has been proven that being unfit and lethargic after completing treatment was linked to a higher risk of the cancer returning and a shorter survival time.

The benefits of exercise are highly stressed for the normal population, but it is not as well known that cancer survivors can experience many of the same benefits. The benefits towards one’s body include less weight gain, leaner body mass, and greater muscle strength, but the real benefits have to do with the regained energy one receives and lower stress levels they have. Whether one is going through treatment or recently completed it Physical fitness can help gain these energy levels back that are usually sucked out of the body from the treatments.

The research has shown that people who have been diagnosed with cancer tend to slow down. This is attributed to depression, stress, and feeling fatigued from cancer and the treatments. It is extremely understandable to be having these feelings but it is counterproductive to not take a stand against them. It is recommended that cancer patients start exercising as soon as possible after their diagnosis and treatment. In other words, if you have slowed your physical activity after your cancer diagnosis, now is the time to rev your engine.

According to the National Cancer Institute, the American Cancer Society recommends 30 to 60 minutes of exercise five times a week to receive the maximum benefits for reducing your risk of reoccurrence and raising your chances to beat this disease. The types of exercise recommended are flexibility exercises to keep you mobile, aerobic exercises for cardiovascular health, and resistance training to build muscle. Everyone is at different levels of exercise and if you are at a low level to start just taking a walk can go a long way to relieve some of the stress involved with this awful disease.

By: David Haas

Teal is on the horizon, wear teal on Sept 2, 2011

2011-08-21T22:14:00.000-07:00

http://www.unitedstatesofteal.org/take-action/

Time	Friday, September 2 · 12:00am - 11:30pm

Location	Across the United States

Created By	Ovarian Cancer National Alliance

More Info	Teal is the color of ovarian cancer awareness. On the first Friday in September, our national ovarian cancer awareness month, we urge everyone who cares about this disease to wear teal--and tell others why you are dressed in this color. This year, we're adding a social media component to Wear Teal Day. Please post photos of yourself decked out in teal on Facebook, and tag the Ovarian Cancer National Alliance. We want to create an album of women and men in teal from coast to coast.

chemo brain creates headache at work

2011-08-21T00:01:00.000-07:00

As you may know, I have memory problems and get rattled with too much info too fast. I have a job that does not provide me printed references because I work in a completely virtual world. I am working with the assistance of DVR and a community neuro rehab therapist to help me retain my job and assist with accommodation requests.

My employer is aware that I have some cognitive challenges. Well, I made a mistke tonight, didn't realize the gravity of the mistake and that it was such a big mistake. I am so upset. I just can't remember everything and they don't give me enough time to re-read policies. I hate this, I hate this, I hate this.

For $12 per hour.

It's a golden job opportunity with a great company, but I can't do well because I can't keep up with all the restrictions and limits associated with not being allowed to have printed material in my work from

home setting.

Just feeling zinged. I am trying so so hard to be a good employee. I feel demeaned and stupid.

How can anyone memorize hundreds of pages of policies? And I can't navigate the computer quickly enough on my small screen. I am requesting a larger monitor so I can have multiple windows open, so that I can keep the policy references up and ready to access. Seems logical right?

Just frustrated. I still have a 7mm stable tumor on my liver. Great to think I'll spend the rest of my life in low paying jobs constantly getting in trouble because I have a bad memory. Fine.

Sorry, all I can think about is that I'm going to get fired now.

Great, just what I need.

Love All Life

2011-08-17T15:40:00.000-07:00

Yesterday I was showered with grief over a crow that was dying in the street. I was on my way to the pain clinic when I noticed a crowd of crows squawking and flapping their wings. Inside this circle of black birds was a suffering, bleeding crow, flapping around, moaning with agony. I pulled over, grabbed a towel from my trunk and gently scooped up the poor little soul to carefully rest him on the grass. I said a little prayer and started to cry.

I looked into it's eyes and I could see it begging me to help him, and I could do nothing. He was almost gone. The other birds all gathered up along the telephone wire, continued their songs of fear and desperation, to help their friend. It appeared that a car may have clipped this little guys wings, and rendered it to pass along with God. I don't know. It was just overwhelming.

I suppose I should have called someone to take the bird away, but really I was too upset to do anything other than ponder how quickly life changes, zap, in an instant it's gone.

Like the poor people at the Sugarland concert in Indiana, suddenly, no warning, they passed to a new level of existence. Just so tragic.

On the opposite end of the spectrum, my new job is to assist people with their emotions related to upsets over "stuff" missing, late, lost, etc. Help them solve the problem so they can do the important things in life. I am so appreciative of my job, I just don't understand though why people put so much stock in stuff.

Why get so upset over stuff? It's stuff. It's not alive, it has no soul. Save your anger to defend the homeless man who is beaten to death. Save your frustration to fight hunger. Save your angst to give energy to help your neighbor. Just a thought.

Below are a few articles on some new and non-traditional medical interventions to treat cancer.

The article about a chemo bath is quite intriguing, and I wish I'd received a chemo bath when I was receiving my debulking surgery. I remember distinctly speaking with a dear friend about this very thing, not knowing that the treatment was being studied. I said "why didn't they just spray a bunch of chemo inside my abdominal cavity while I was in surgery"? I mean, seriously!

I was already going to be in severe pain. Oh well. It just goes to show you how important it is for us patients to do research before surgery, if at all possible. Patient be aware!

http://www.10news.com/news/28853209/detail.html

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110817/EDM_cancer_110817/20110817/?hub=EdmontonHome

I know my post is kind of all over the place, but I had to talk about the poor little crow. When you look deeply into any animals eyes, you see "them" their spirit. Love all life!

Peace and Blessings

Denise

30 Years Ago: The Day the Middle Class Died | Common Dreams

2011-08-13T14:49:00.000-07:00

30 Years Ago: The Day the Middle Class Died | Common Dreams

Take your life back. If the healthcare reform platform fails, we all will greatly suffer. Think seriously about this. I saw on CNN today that there has been a 70% increase in food stamps in the past 7-8 years!!!! Our country is not going to get better if hardcore republicans take back the White House. They want to take away the last remnants of any programs and policies that help the average person live a happy and plentiful life, meaning, the basics.

For those of us who have or are currently facing cancer treatment and/or managing side effects of our surgeries and treatments, disaster looms.

Every person deserves to live a decent life, around the world. We are going backwards!

Please think about this when you start to ponder your election choices. I am defending the President, and will vote to keep him in office. He needs to retain his leadership position, to remain an advocate who understands that we all deserve equal access to healthcare that is affordable.

I know the healthcare reform legislation is not perfect, but it is a starting point. Personally I would have preferred a single payer system, nationally available to all people who live in the United States. I just don't believe in "for profit" health care, but that's just me.

Protect your right to healthcare. Protect the rights of your children, their children, their children's children.

The Uber-wealthy can contribute more, and they should. N'uff said.

Peace

Update post chemoville

2011-08-08T22:16:00.000-07:00

This is me before chemo in October 2009. Since then I've been bald and have grown

super curly grey locks. To color or not to color......still deciding.

I am finally scheduled to meet with the pain clinic next week to help me manage the never ending abdominal pain. This pain has become much more evident as I've started working from home. It hurts to force sitting for extended periods. I don't have as much flexibility with my WFH job as I'd hoped, and will just have to do the best I can. I have a golden opportunity if I can just hang on and keep up with the rest of the group.

The good news is that I may get some help paying for some ergo designed keyboard, monitor and may set up space so that I can stand and work when needed.

We'll see, so much effort to earn less than I earned in 2006. Oh well, what can I do, I'm so lucky to have this new job. Have to do what it takes. I just hope I remember things....yikes!

It hurts to sit for a long time and wear a bra or anything crossing across my waist. I find myself wearing little sundresses a lot, thank goodness it's warm. But this cannot continue. There's no way I could show up for an office meeting in a moo moo, or whatever.

I'm just so tired, catching up on paperwork and calls to doctors that I missed over the past three weeks. I need to reschedule a mammogram for my BRCA1 mut+ follow up. And, my mom has been warrior woman battling the woes of dialysis. Any advice???

Last week my sister took her, this week I take her. It's like a part time job for mom and very stressful, long days. Somehow I believe God will give us all the strength to get through. She has been through the wringer.

Now that I have a part time job, I can focus on increasing my life's stability, and be more valuable to others.

Cancer greatly reduced my "market value' in terms of being a regular employee, but it has increased my community value, which is where I need to focus my energy. My priest even told me to use my cancer to help others with cancer. I must stay on this track, that is where I provide the best value.

Once I'm a little more stable, I'd like to create a non-profit that fills a niche area of need within the ovarian cancer community. I know I can be successful, once I determine the needs and my best skills and resources. Now is the time, now is the moment.

Pressure is on to move into my own residence, which I hope works out to be sustainable. After 9 months of trial work period, I will probably stop receiving my benefits, and I'll be back to square one in terms of low income again. So I'll need to plan a way to prevent problems there.....so much to consider.

My job is time-intensive, lots of pressure. It's like running everywhere, never walking. I'm not sure I can hold up.........Lord help me stay afloat and not get demerits..........please. Seriously, I hope I make it.

I don't know what is going to happen in the near future, so my goal is just to keep my job, help my mom, be there for God and family, go on a few dates with "J" and stay positive.

I am so lucky to be breathing........Thank you God.

Peace and Blessings to all

training day gone bad

2011-07-31T14:29:00.000-07:00

I am finally able to take a few minutes to say hello to everyone and provide an update on venturing back into the work world. I'm exhausted and feeling pressure from everywhere. I had no idea that working with my new employer would be so hard. I applied for a work from home customer service job.

Imagine standing in a swamp and just off into the distance is a heavenly garden, with little bunnies and deer, puppies, kitties and children laughing and playing. Everyone and all things are beautiful and peaceful, happy. But you are standing in a swampland and the only way to get there is venture through the gators and cling to vines.

If I am able to survive training and keep this job with all it's restrictions, I will have a golden job. My actual job is only part time, but the training has been full time and it's been very intense.

I woke up on Saturday morning and my knuckles on my right hand were all swollen from all the typing, which I hope will NOT be the case if I get a modified keyboard, and will be on part time hours.

I can't remember all the stuff I need to for training and need more time. I may have a hard time keeping up with their attendance requirements because of my disability. It's so so so strict, and for them, there is a good reason, it just sucks for me. All I can do is ask for accommodations and hope they accept.

My gut says this company loves it's employees. I just have to keep the faith that I am here for a reason and that whatever happens is intended to happen, even if the result is job loss and looking for new work.

I just had no idea what I was walking in to. I thought it was going to be easy going. Boy was I wrong. I just wish I'd have know about all these restrictions before I applied, I would have probably never applied.

So I am going to continue to give it all I can. I remember when I was in college and I was learning neuro-anatomy, that was easier than this new learning. I have never worked for a company that did not provide written training, ever in my life. I hope I make it and I don't drown.

On another note, my mom has started hemo-dialysis. Her life is upside down and she needs prayers. Thank you for all your thoughts and prayers for her. I love her so much!

Peace,

Denise

Disclosure of a Dsability

2011-07-23T23:18:00.000-07:00

As many of you know, I have been fiercely seeking a job, no easy task in this economy, add cancer and rheumatoid arthritis, a two year gap in the resume, and well................I was surprised and am excited to say that I have found a part-time job. Yay.

I do not plan to ever name my employer, for obvious reasons. I love the company and hope everything works great. I get to work from home, which is needed. Our training is full time and on the first day of training I was sent to the ER from the office because I got dehydrated, sicker than ever. Not a good way to start off a new job.

I'm having some challenges keeping up with the training, and hope some requests made for easy accommodations work.

I hope that the company uses me to better their ability to hire others with disabilities, and let me be a positive resource.

I'm really tired, just wanted to share the good news. I pray I am able to keep it.

Peace,

Denise

He invites, it's up to us to respond

2011-07-17T22:31:00.000-07:00

I met with my priest yesterday to talk about my shortcomings and how I feel that I am failing God. I won't give details, except my worries were about my pains and my new boyfriend. I had promised God that I would serve him in whatever capacity presented of His choosing, because He has left me here for a bit longer.

I was blessed in so many ways with great cancer care day of diagnosis and chemo. My follow-up is wonderful and I have confidence in my medical team. My family is the ultimate blessing, in ways that cannot be measured. My sister and mom have made ongoing sacrifices, an aunt lends a tender ear. My brother there to step in on a moment's notice. My uncle, aunt and cousin calling every week while in chemo. My dad calling every week. And countless other family and friends. I feel undeserving. All Catholics understand this. Yesterday I received a new perspective, the gift of a new light to shine on my life. Taking away that ongoing guilt that hangs and lingers.

It has been presented before by another friend blogger of mine, and here is what the Father said to me. Cancer being brought by our Lord is a gift. Not as in "oh lucky me, look what I have". It is a gift that should be shared with others, to help others with the same fear find comfort in my strength and healing. And to share how my faith in God, relentless prayer and constant search for His presence kept me always hoping and believing that I would be alright. He suggested that I become even more active in helping others with cancer. I have always felt this to be my calling, but exactly how remains the question.

I currently help women who are members of an online ovarian cancer community, but know I can do more.

Now that God has blessed me with a part-time job (not official until the paperwork is signed), I will have the ability to base my energies around that focal point, church and my dear mom. (Mom starting dialysis and it's been an awful struggle, sigh. Please send prayers).

I believe that once the job training is complete and I have a sort of "routine", I can create more energy to be on God's purpose line. I have creative ideas, and plan that this will be valuable and beneficial for women with ovarian cancer.

So we are all invited to join with God, respond to His call and make a better world, but not all do. I am not to judge who does and does not, for judgement is up to God. We are all mere mortals doing the best we can, but if we reach out to God and ask for help, we can get what we need. Sometimes what we need is not what we want or think we want....................always a frustration.

Please have faith. Trust in God. I do. I love my family and friends so much. Please pray for mom that her doctors guide her intelligently, treat her with great care and that she begins to heal and feel better as she travels the road of dialysis.

Peace and Blessings to you all.

More on brain drain

2011-07-09T15:03:00.000-07:00

I can't disclose the source of results for further cognitive testing, but I do have some real problems with my memory. I had another battery of tests a few weeks ago, and the results are interesting to me. It's very difficult to explain the gravity of the consequences of this "chemo brain" stuff, but let's just say that I have a whole new appreciation for what once was my persona.

The tests showed that I have fairly good concentration now, but new information kind of disappears into nowhere land. Not ALL new information of course, but generally new information is hard to recall. So important events, appointments, recalling things I did last week or even a few days ago, just kind of get all gelled together or lost.

I have started keeping a journal of what I do each day, in terms of activity. Except I forgot to write in it for the last two days...............HA!

The other thing is that I do have trouble verbalizing my thoughts sometimes, can't generate the "right" word when I'm talking with someone. It takes me more time to process information, and I can see that for other people this is frustrating. Sometimes I stutter. I never stuttered before cancer.

I have had emotional upsets and conflicts with other people at times because I've said the wrong thing, or used poor judgement in a social situation. I'm poorly understood. I feel like hiding now, but I won't. I can't do anything right and still feel like a failure sometimes.

But I am much more hopeful than ever before......I just have to keep on moving, keep going forward. We all do, for what choice do we have. Yesterday is gone.

These refined results are good for me to know because I can do more specific things to compensate for my problems. I get overwhelmed with too many things to do at once..........................blah.

Like today I have a pile of folders that contain "to do" and "job search" etc. The process of looking for a job, keeping track of my applications, resume submissions, follow-up letters, doing Excel training, looking online for jobs, etc is just a LOT. I'm finding it takes FOREVER to look around on the net, create my little tickler system, respond to questions etc. Wow, I can't wait til I actually find work.

I have had four requests for interviews! Yay. I don't want to jinx anything, but I'm praying one turns out to be a winner. I will feel blessed with whatever comes my way.

I have decided to fully disclose my cancer and rheumatoid arthritis to all potential employers. I have no other way to explain the gap in my resume and my scattered work history. I'm tired of hiding my disability.

I want to work for someone who actually accepts me in total, no resentment.

Some of the inquiries are with companies that allow people to work from home. Fantastic!!!!

I just hope I'l be able to keep up. I am going on an interview next week for a full time job, in the hopes that maybe they would consider part time. Not likely, but the job itself would be rewarding.

One of the other options requires 40 hours week of training for three weeks, for a part time job. I would really love that job too..............but I am worried that I won't handle the training well. I mean, that will be really difficult for me to do. Ugh.....but I have to do it. I need to push through.

Mom starts dialysis next week, and we have training classes. I pray deeply that her energy improves with dialysis. We are going to have some fun tonight, to get her mind off the upcoming change in her life. This is a big deal, a complete change in lifestyle...........please keep her in your prayers.

My sister has a birthday tomorrow!!!!!!!!!!!! Yay. Happy birthday Mandy. I love you.

Peace and Blessings

Birthdayversary

2011-07-02T21:55:00.000-07:00

At the end of July it will be two years since diagnosis. In March 2012 it will be two years since treatment completion. Milestones in terms of recovery.

Today, July 2, 2011, is my birthday. This is the first birthday in Seattle that I felt totally engaged in and part of the celebration. I know that sounds untrue, but it is totally honest. I have so much more energy than last year and my body is recovering. I've decided that the remaining pains and problems will probably be life-long. For to have a life that is long with this pain is my blessing.......

I had the best time with my MOM, Sister, her husband and their two lovely girls. We went to a Greek restaurant in Phinney Ridge called Yanni's. It was delightful. they cook all meals made to order, fresh food and comfortable, friendly atmosphere. Beautiful venue, soft blues, nice artwork, clean, Greek music in the background. I definitely want to go back.

The best part was that everyone enjoyed their meals, laughed and seemed to have a good time.

The sun was so bright today, it was nice for a change not to worry about a coat.

Everything just came together,

My brother called me, my dad, my aunt and uncle, an old boyfriend sent flowers ( don't tell "J")...just kidding. He is a friend and lives on the other side of the country.

Speaking of "J", things seem to be going well. We walked around a green lake last week in the evening and had a late bite. Casual but so much fun. He's so sweet. Sigh....

My labs are good, 9 of 35 for the CA125. I have some twinges in lower pelvis and that pesky ongoing abdominal pain that has taken up residence since surgery. I was told that in that area are surgical clips. Supposedly surgical clips can become surrounded with scar tissue, and get "inflamed". Great....sigh

So my pain is an ongoing issue, plus I get nausea with every single hot flash.........drag to the max.

I have a CT scan next week to rule out recurrence. If nothing shows, they may refer me for an endoscopy. I hope we have more conversations as to how to manage the clips.

I don't thing the clips can be removed as they were inserted to block the ovarian arteries. Now that I have no ovaries, there's no need for their blood supply. But it makes complete sense that these darn clips are causing me pain. Not sure if anything could ever be done about that........the battle continues always.

Ha...wanna hear a funny. I got rejected to work in a call center. How pathetic is that. I guess I'm not quite the shark they need. Probably all for the better, I'd pry end up hating it, too much stress and rejection.

So the job hunt continues...........................................

I'll send an update on the CT scan. The main energies in our family are directed to supporting my dear mom right now. She has surgery in a few weeks and will start dialysis. It's scary for me, not sure about anyone else. I want her to do well and pray that she adapts easily to the treatments. Most of all I pray she feels better and regains her sense of "life" and vigor. I love you mom!!!!!

Peace and Blessings to all. Thanks for stopping by!

My dream

2011-06-26T12:00:00.000-07:00

I had a really interesting dream last night. I dreamed about my amazing surgeon, my amazing gynoc, my family and other people I don't know. It was a celebration, my party, that I no longer had cancer.

It was fantastic.

Imagine an old french cottage, but it's the size of a huge warehouse. The cottage house was nestled up in some mountain range and I was frantically trying to prepare food for my guests. I knew they were coming over to celebrate my recovery, but I had no food to serve. This was causing quite a panic.

All I had were partial jars of spaghetti sauce (which I rarely buy) and a fondue pot. I was so stressed because I had all these people over and nothing to serve. Anyway, the place was crowded, laughter all around, everyone was having fun! My beautiful sister was entertaining everyone with her artwork and she had even designed a fantastic set design for U2. She had mocked up a miniature set backdrop and was going to enter it into a contest. Everyone was proud of her work.

My cousin and loving aunt were with me in the kitchen helping with food, the rest of the family and friends were in the living area. Suddenly my surgeon came in and gave me a big hug and off in the background my gynoc waved at me and gave me a big smile.

My surgeon was wearing a huge fur coat and looked like he was off to go skiing in the alps, funny. He looked deep into my eyes and said I was going to be OK. (I can still feel his hug) It was a great dream.

I see my gynoc's nurse practitioner tomorrow, for a follow up, get a CA125 and physical exam. I hope my dream is a reality and that things stay good. I'll let ya know. Have a great Sunday.

Peace, love and blessings.

Thank You Cancer Lifeline

2011-06-17T21:09:00.000-07:00

I wanted to take some time to thank Cancer Lifeline today. I have been graced with their help in several ways, and if you are looking for a serious place to donate money, think of Cancer Lifeline.

For the past several months, I have been able to receive free dental care, and let me tell you, that has been a huge savings for me. Chemotherapy can do a number on your teeth, and through Cancer Lifeline, amazing dentists and dental assistants volunteer their time to help cancer patients maintain healthy teeth. At the risk of getting too personal, I was unable to tend to my teeth while on chemo and for a while after chemo.

Several months ago I was referred to their services by a team member of the Survivor program at the SCCA. The SCCA takes very good care to help patients with aftercare, and the dental referral was part of that ongoing maintenance. Wow, I couldn't be happier.

The other blessing offered to me has been a recent series of phone calls from a Cancer Lifeline volunteer. I have the opportunity to talk about my feelings and figure out healthy ways to resolve emotions related to my cancer. It has really helped me a lot, especially in the past few weeks.

Cancer is complicated, everyone has their own view on cancer, it's process and an individual's future. We all want for nothing but great results to come from surgery and treatments, and hopefully that IS the case. Getting through the process of diagnosis, treatment and recovery comes with all kinds of issues, good and bad. Cancer Lifeline offers just that, a lifeline. Check them out and see for yourself. Maybe you are a cancer patient in the area or a caregiver in need of a little support. Peace, Love and Blessings

http://www.cancerlifeline.org/

Ovarian Cancer literally bullies it's way around

2011-06-15T10:33:00.000-07:00

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110614/ovarian-cancer-cells-invasion-mechanics-study-110614/20110614/?hub=EdmontonHome

This article and accompanying video is fascinating, scary, potentially a breakthrough in finding the right way to handle ovarian cancer.

Prescription Drug Program

2011-06-14T18:54:00.000-07:00

Prescription Drug Program

If you live in Washington, you can get a discount on medications through the Washington Prescription Drug Program. I received this information from helpful people at the Department of Vocational Rehabilitation.

I have not used it yet, but I researched one of my medications and there was a very substantial savings. I spent $131 on a new medication this weekend, ouch! I had to put it on a credit card. I have been stressed out because the monthly cost will be $200, and it's a very important prescription.

I WAS DEBATING TO DISCONTINUE THE MED......

When I asked DVR for help, they e-mailed me this resource. It's free and worth a look.

I literally do not have the money for my latest med, so this is so helpful. I'm still waiting on a decision from SSDI to get my payments up to what should be allowed, sigh.

I like this because it's a good example of how asking for help can be a good thing.

I don't always ask for help in the right way, or I ask the wrong people, or whatever. Hopefully this will help some of you. If you don't live in Washington, I hope that your state has a similar program.

Peace and Blessings,

Denise

Boot Scootin' along

2011-06-10T15:25:00.000-07:00

A sprained ankle! Welcome to the real world. I fell off a curb the other night, and this is my reward. I've never had a sprained ankle in my life, and now I get one....HA. The curb was only a few inches high, but it was covered with leaves and little branches etc. I had no clue that a curb even existed until I found myself tumbling to the ground, of course in S-L-O-W motion. I could walk on it but it hurt. "J' was walking with me and he was so sweet, he said he wished he'd held onto me. We had been holding hands, but had let go right before I fell............sigh.

At 3am I found myself crawling across the floor to get some ice because I couldn't walk on my right leg. The next morning I was still crawling around because I couldn't put any weight on my foot at all. My insurance company told me that they preferred I go to my PCP instead of ER.........so mom and I took a cab ride to the PCP. They did Xray and found no fractures, thank God.

The thing is that it was great to have mom there with me, I really needed help. AND it was sort of a refreshing change of pace to see a doctor for something normal. No major episodes of anything tragic or cancer related, just a sprained ankle. Not that I'm happy to have a sprained ankle, but it was just nice to have something simple for a change.

The doctor, the nurses, the techs were all so so nice. Wow, that was great!!!!

Plus, we are changing my antidepressant now....yay. Going to ween off of Paxil and start Effexor. Hoping that this change will decrease my drowsiness and help me to get up earlier in the day. Really need to be able to function on 8 hours of sleep versus 12. Getting back into a normal life will demand that.

Thank you to my friends and previous co-workers who have given me permission to have future employers contact them for references!!!! Really need THAT.

Please follow my sister on her Weathered Silo Blog, just to the left here of my blog. http://www.weatheredsilo.blogspot.com/

I have seen her beautiful paintings and they took my breath away. She really is talented. I can't wait for her to start selling her work.

My brother was chosen to coach a hockey team and they will be travelling out of state to compete in some championship competitions. Yay for him.

My cousin Tammy is having her baby shower this weekend...yay. My aunt and uncle are so excited!!!!

And my mom is having a good day today....yay.

Love you all!!!!!!!!!!!!

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

2011-06-08T14:57:00.000-07:00

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

Some of you may find this really helpful to your cancer care. Peace and Blessings to you all!

Nightmares and job hunting

2011-06-06T22:27:00.000-07:00

My mood is edgy, angry a bit, overwhelmed and begging for an answer to my "why". I met with my vocational developer today to start the process of actually applying for new jobs. It was as if nothing I'd said before about my needs, wishes, accommodations and preferences was heard. I know it was, it's just that the reality of job hunting is not soaking in like a smooth bubbly bath, more like a how a hard wave of water slaps you in the face, ouch.

Speaking of water, before I get into the hurdles for today, I have to tell you about ongoing dreams that I've been having lately. For the past few nights I have been dreaming that I am staying at this luxury hotel, sounds great right, except that everything that happens is weird and spooky.

Last night I jumped into the deep end of the spa pool feet first, and never touched bottom. I remember feeling the rush of water sweeping upward along my body, desperately searching for the edge, to stop or spring up. I can't remember how I surfaced, but I eventually did. I thought I was going to drown. Then I was in a getaway car and one of my little nieces was in the driver seat. She was laughing and having a ball driving this huge car, and I was hiding from an ex-boyfriend. Then suddenly my sister and her husband lived in the luxurious hotel, and I was shown into the massive kitchen.

The kitchen was made of all 1" square old fashioned blue tiles, everything was the same color, including the food and sink. Then her husband offered me some licorice covered with frosting. My sister welcomed me for a tour, but I woke up before it started.

I have no clue what any of this means.

Some of you may know that I am one of many women who were misdiagnosed and because of stupid doctors in California, I was diagnosed with an advanced stage of ovarian cancer. Being forever grateful to God for my excellent surgery and chemo, I am lucky to be alive.

To get to the point of today, I'm lucky to be alive, but feel like I have no control over what is left of my future. I am doing OK with cancer so far, NED.

If I want to be able to live independently, I'll need more income. If I want to enjoy life and take a trip, I'll need more money. If I want to give at Christmas, I'll need more money. You see where I'm going here.

Today, my job developer pulled several possible job opportunities that she thought would suit me. All of them are too far away, some only paid $10, most have expectations I cannot do or require skills I don't have. Her approach is more like tossing a bunch of spaghetti on the wall and seeing what sticks. My approach is to be laser focused so I'm not running around with my head cut off.

She is right, I just need to get out there and apply. She guaranteed me that she will be my advocate and help me with accommodation requests etc, AND she can help communicate with the human resources department once I've submitted an application to help move the process along.

I am very lucky to have this kind of support, I have fought very very hard to receive it.

My question is this: Why is someone who has a high risk of recurrence being forced to go back to work? Why can't I just ask the lousy gynecologist who ignored my symptoms, and didn't do a bi-manual pelvic exam, to give me money to live on so I can be happy? Oh I forgot, he isn't held accountable for ruining my life. (At least that's how I feel at this second........)

How do cancer survivors travel the world? I'll never see that day.

My job developer is trying to understand, she knows I just want a job where I come home and feel good about what I did at the end of the day. I don't want it to be more than 15 minute commute, because it's only part time. I get tired, I get exhausted. I don't want a long commute for a part time job, unless it pays really really well. I'd love to work for an organization that helps people with cancer.

Hence, why am I being treated like I'm asking for the world when I say I want to to work from home, no sales. Is that too much to ask? PLUS, a job working from home allows me to work while on treatment if I have a recurrence, so that I can keep money coming in. Geeze.

I hate this, competing with able bodied people who can burn the midnight oil. I can't.......never could.

I don't deserve this ongoing heartache. I'm physically and emotionally spent when it comes to jobs and job hunting. I don't want to play games, I just want to do worthwhile work and in the process of doing so, do that work in such a way that it doesn't kill me by stressing me out or exhausting the heck out of me. Again, I ask too much.

Ever since I lost my career in the mid 1990's I have been struggling so badly and when I got cancer I had a good job with benefits, and had to move to Seattle. I had no choices here. For most of those other years I rented rooms in people's homes because I couldn't afford my own apartment, California is expensive. I lived like a gypsy. I don't want to be a gypsy any more.

I am starting over again and hating it. But I will pull through somehow, with the Grace of God. Life could be worse, so I know I'm much better off than a lot of other people. I do know that.....I just want a break.

Peace

The FUTURE OF SURVEILLANCE?

2011-06-04T18:45:00.000-07:00

Medical News: Group Issues Gyn Cancer Follow-Up Guidance - in OB/Gyn, General OB/GYN from MedPage Today

I pray that women with gynecological cancers will be able to continue to receive their cancer surveillance services from gynecological oncologists. If the information in the article comes to fruition, your primary care doctor, the one who missed your cancer in the first place, will be responsible for monitoring for possible recurrence in the future.

What What What What What

How tragic ......

I don't know how to stop this ball from rolling but we all must pay attention to this possible trend.

Remember Ovarian Cancer and Dr. Oz

2011-05-28T22:08:00.000-07:00

I'm thinking out loud here...........

Why is the medical training segmented into body systems versus body regions? I ask this because this "systems" frame of reference is probably one of the biggest reasons ovarian cancer is often detected in an advanced stage, if at all.

I attended a very informative survivors course on May 20th designed to help ovarian cancer survivors better heal, understand this illness and look for ways to start to move forward with their lives. I enjoyed it and was fortunate to hear my gynoc speak, she did amazing. I met some women from my online ovarian cancer support group, yay. Overall, I learned a lot, walked away with good resources, and made new friends.

Dr. Goff presented incredible research done on early detection of ovarian cancer. But we are really still in the research stage. Of course I can't remember all the details and left my notes in another place, but it's safe to say that Ovarian Cancer researchers are aggressively testing for valid and reliable early detection methods. It's on the agenda and we must continue the fight.

So at the end of the day, the best mechanisms for early detection are for women to pay attention to their bodies, look for early signs of ovarian cancer and tell their doctors what's going on. Then we need to depend on the physician to know what tools are needed to accurately detect what illness is present, and know then how to properly treat the illness. Is it IBS or ovarian cancer? We are constantly amazed at how frequently a woman with deadly ovarian cancer is told she probably has IBS and almost dies.

So what about women who aren't even aware of the symptoms?
What about women who have few or no hard symptoms?

We pray for good doctors. If a female has an under-informed or misinformed or outright negligent primary care doctor or regular gynecologist, please pray for her.

If you know my history, you know what I'm talking about. Here's a reminder.....early symptoms for me were low back pain, cruel/severe abdominal pain, whacky periods........eventually bloating, even more abdominal pain, unable to eat real food, getting full quickly, problems with urination ( I was told to do kegel exercises).

All of these symptoms occur in the abdominal and pelvic region of a woman's body.

BUT, instead there are multiple doctors evaluating the same region of your body, all looking at different systems. Not ONE, not ONE detected my ovarian cancer early. Early detection rarely occurs.

I went from PCP to regular gynecology to gastroenterology and even oncology. The last gynecologist who treated me in California never did a bi-manual pelvic exam. I was having problems. I'll always wonder if he could have detected it early....

The gastroenterologist did a colonoscopy/endoscopy and found nothing.

My PCP was worthless, and said it was up to the specialists to figure it out. She's the one who told me to do kegel exercises for my urinary frequency. Meanwhile I was having other problems....ugh

And, I'll remind everyone I was told by at least three doctors I was too young to have ovarian cancer. One oncologist (who only saw me one time) told me he chose not to do a CA125 test on me because of my rheumatoid arthritis. Since I was told I was too young to have ovarian cancer, I actually believed them.

Again I thank God that He sent me an excellent surgeon and then an excellent gynoc in Seattle. It's like finding the last lifeboat on the Titanic.

So here's my solution. Instead of a million doctors looking at different systems in the same region, lets have a few specialists look in the abdominal as a whole and see how things work together for a change.

If medical care was based on regions, then all the organs and tissues in THAT region would be analyzed. It doesn't mean that the doctors couldn't incorporate their comprehensive system knowledge, it just makes diagnosis more efficient. I think we assume that the PCP is supposed to wear this hat, be the central information communicator. Alas the PCP seems to have been reduced to a referral agent. I hate to say it but they don't seem to know as much as they used to, maybe that's all in my head.

In other words maybe a new area of medicine is necessary, an abdominal cavity specialist. Not to detract or add to the multitude of specialists already in existence, but in the case of ovarian cancer, the symptoms show up when the tumor grows large enough to negatively impact other "systems". It impinges on say the ureter or the bowel or some other organ nearby. It is then that we know something isn't right.

You would think that logic would dictate that because the ovaries are hidden, that doctors would be MORE aware of ovarian cancer, because they should be aware of hard to detect illnesses/diseases as well as easily detected diseases. It's like the medical community only wants the easy patients sometimes. How harsh us patients must be if we were to expect a gastro doc to be aware that ovarian cancer symptoms are similar to IBS. We are demanding aren't we....

So at the end of the day, we as women need to tell the doctors we might have ovarian cancer. Unless you are favored by God to have an amazingly bright and informed physician who remembers ovarian cancer, you may get misdiagnosed.

ALL WE ARE ASKING DOCTORS TO DO IS TO REMEMBER OVARIAN CANCER. THAT'S NOT TOO MUCH TO ASK IS IT????

In the mean time, please link to Dr. Oz show as he is taking the daytime TV show lead to help teach women the signs of ovarian cancer. Dr. Goff is also on his show. She provides valuable and lifesaving information and explains very clearly how dedicated she is to ending this deadly disease. She also reveals new research in the field of ovarian cancer, please watch the program.

http://www.drozfans.com/dr-ozs-advice/dr-oz-ovarian-cancer-symptoms-warning-signs/

Please......

REMEMBER OVARIAN CANCER

Peace and Blessings

Dear Cathy Rest in Peace

2011-05-25T23:51:00.000-07:00

I have to take a deep breath because I'm about to write a difficult blog. Our beloved online teal sister

Cathy A. has left our earthly world and has moved on to a much better place.

She is now with God, resting and hopefully smiling.

When I first joined this online community of amazing people, Cathy was more than likely the one to post a funny story or joke, to help us heal through laughter. She was gifted, blessed and very generous with her humor. I always enjoyed her posts and looked forward with great anticipation to reading her quirky notes.

She fervently raced after a clinical trial, but only God knows why her road was rocky. Although I never met her, she will forever be in my memory as an unselfish and graceful woman who fully gave of herself for the betterment of others. As I was saying goodbye to my little bee, her dear family was saying goodbye to her. She went home, and is no longer in pain.

Rest in Peace dear Cathy. I pray for your dear husband and family. May God hold you gently in his arms.

When bees say goodbye

2011-05-22T15:24:00.000-07:00

I was captured today by the behavior of two little bees, one alive and one who was no longer living. I spotted these beautiful little critters on the back patio landing that leads our steps to the rickety basement. The basement is not finished, but exposed and houses the laundry area. I had taken some clothes downstairs for the first of several runs of laundry and upon coming up to the ground level, there they were, this lovely pair of bees. I had intended to write today about my seminar, but this story tells us about what I learned most from the seminar.

At first the bees were hard to see, with the old cement, moss, tiny pebbles and what not. But as I bent down to take a closer look, I saw one on it's side, not moving and the other passifying and tending to what seemed to be a dear friend. I know absolutely nothing about bee behavior and did a quick search so that I could find some substantial information about what I saw, but really found nothing.

As soon as I saw the bees, I sat down on a step and watched, and gazed and wondered and almost felt the pain of the living bee. I felt so bad, and wanted to do something to help it, but couldn't. Since having cancer, I have found myself much more sensitive to animals in general, I just feel them in a different way than before. They have spirits and are not just nerves and tissue. For example, just last night a raccoon was on our roof, and upon it seeing me looking at him, walked from the edge of the house to an area just above the door and he just stared at me. I could feel him and wondered, wow, and oh no...is this bad or good. Either way, it was a being, not just an animal. (I've always believed all animals have spirits, it's just that now that sense is much more intensified.)

After sitting outside for a bit, I did a small search on the internet. I did read that sick bees are either taken from a hive or take it upon themselves to leave the nest when they are sick, so as not to infect the rest of the bees. It preserves the overall health of the nest and prolongs the hive's life. I wonder if this is what had happened to the poor little bee. Maybe the caretaker followed the bee to be with him during his last moments.

As I sat there outside on the step, I actually took the back of my hand and stroked the back of the caretaker bee. Before I did this though, I hesitated a bit because I thought, "don't do that, it's silly and it'll probably sting me". Well, it didn't sting me or anything really. It was focused on it's friend. It just moved it's antennae and continued to keep doing it's business. The caretaker bee was stroking the dying bee with it's antennae, slowly moving around, seemingly to sniff and touch and massage it. It was just fascinating. I have never seen anything like this anywhere.

The caretaker bee was not in any way hurting the other bee. The caretaker bee was literally taking it's antennae and touching the other bee in multiple places, as if to comfort it. This went on for over an hour.

As I sat there, mesmerized by this activity, I started to think about what motivates a bee to do this. Why would a bee spend so much time taking care of another bee, who was obviously either dead or almost dead. I thought about love and how we, as humans, need love to thrive and to "be" and without love we could literally die of deep depression or other ailments.

I thought about how nature instills this loving instinct in all of us and why does this survival mechanism get bogged down and altered in humans.

Well during this time I went back inside to call my dear Aunt who is having a minor surgery tomorrow, to wish her well. I went back outside when our conversation ended, and the caretaker bee was gone. All that was left was the tiny body of the other bee, lying there still and in peace. The space suddenly felt empty, and a feeling of loneliness swept over me.

So I stood there, quiet for a moment, and then moved the bee to the soil. I felt compelled to honor this little creature so I placed a few tiny rocks around it's body.

At the seminar this past Friday, I felt lots of love in the room. It was a course for ovarian cancer survivors, sponsored by the Foundation for Women's Cancer:

http://www.foundationforwomenscancer.org/

What I really learned at the seminar is that we all need to care for each other, care about each other, and pray for one another. It is in this that we heal.

May you rest in peace little bee friend. Thank you for reminding me of what love means, for without it, there's nothing. To my readers, love your neighbors as you love yourself.

Peace and Blessings to you.

Joy comes from all kinds of places

2011-05-18T22:53:00.000-07:00

My JOYS for today:

1. Playing a new game with Addie, she always wins no matter what. I want to be a kid again, don't you?

2. Just seeing my sister, gives me relief. She came by with Addie Her daughter) today for a short visit, and it was just blissful. Don't ask me what frog juice is, but I can tell you finding it is fun. I am thankful that she has a beautiful life with Patrick and the girls, it makes me feel secure.

3. Seeing mom's huge smile when they were here just spontaneously having fun.

4. Remembering the smile on my mom's face when my brother called Sunday morning. And then I think about his beautiful children and I can't stop smiling.

5. Remembering the smile on my mom's face when she talked with her brother today. His son got a job in the airline industry, yay for him.

6. Weeding (thank goodness the soil is really damp). It brings you literally down to earth, you forget problems and enjoy the sun, the dirt, the green, and just working the soil. I'll pay for it tomorrow for sure.

7. Remembering being at karate last week with Mandy and the girls, what fun.

8. Remembering going to Tammy's wedding two years ago, (almost) and now she's about ready to have her baby.

9. Remembering the smile on my mom's face and the huge roar of laughter each time she talks with her sister Deb, it's fun to listen, mom has a great laugh.

10. Remembering the surprise and joy mom felt when she got a little blankie from her other sister Bern.

11.Remembering the soft little kiss from "J". Now what am I going to do?

12. The most joy was the elated feeling I get from going to church, spending special time with God, praying for my family, medical team, friends, ovca sisters and the homeless. Knowing dad's OK. Thank you God for all your help this week.

Peace, Blessings and all my Love to you

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

2011-05-17T15:15:00.000-07:00

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

Maybe there are some positive benefits to having hot flashes after all!

A tiny break with tiny rabbits

2011-05-16T21:51:00.000-07:00

http://weatheredsilo.blogspot.com/

My very talented sister has been creating tiny rabbits for all to enjoy. Thought you might enjoy a break from cancerland.

Seeing "J" tomorrow, he's hinting about a kiss. Wooooooooooooooooooooooooooooo?

Peace,

Denise

Nobody Has Ovarian Cancer

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A tiny break with tiny rabbits