Gynecology Oncologist the Only Surgeon For Us

The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt


Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.

I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.

I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....

My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.

Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.

My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.

A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.

Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.

He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.

Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.

My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.

So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.

Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY

My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.

During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun

The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.

I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.

I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.

Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.

Thank you God for my loving family and friends. Thank you Arnie.

It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.

If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.

So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.

My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.

One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.

I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.

Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.

I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.

A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.

Happy Easter and much love to my family and friends.

I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.

Love,
Denise

Urgent: One Third of OVCA Patients Receive Proper Surgery and Treatment

http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?pagewanted=all&_r=1
From The New York Times and The Society of Gynecologic Oncology.
Thank you Libby's Hope for letting me know of this significant study.



 March 11, 2013 Widespread Flaws Found in Ovarian Cancer Treatment By DENISE GRADY

Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.

The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.

“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.

The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.

Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.

But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.

“They took the reins out of my hands,” Ms. Mason said.

She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.

Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”

What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.

The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.

Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.

“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.” <9> One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.

Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.

Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.

Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.

But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.

Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.

Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.

And most ovarian cancers are extremely sensitive to chemotherapy, experts said.

In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.

The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.

The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.

Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.

Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.

“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”

Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”

Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).

“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”

Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”

“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.”

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

Thanks to a very wise hematology oncologist in California, where I had my surgery, I was referred to a gynecology oncologist for my debulking surgery. I was optimally debulked and received aggressive chemotherapy. Although I am in a recurrence and on chemo again, I am alive! Had I followed the initial referral to a regular surgeon, I would not be here. Thanking God for that.

When will basic OB/GYN and PCP professionals get it? My care here in Seattle is great. The SCCA takes very good care of me.

They Just Disappeared

I am almost 50 years old, well in a year and half I'll be 50.  Thinking now about all the people I can remember who I know or knew.  Wow, it is truly fascinating to think of what now lies beyond the magnitude of our reach.  Each soul on earth is valuable beyond measure.

I had a weird scare this past week and thought there was something else wrong with me.   No details needed, just suffice to say that I was freaked.  I was not hallucinating or imagining these spots that I saw.   I was worried it was a new cancer, along with another unpleasant issue.

I prayed and prayed.  I wrote to my faithful ovarian sisters about the distress.  I asked my mom and sister for support.  It was so reassuring to ask other people and be calmed by their perspective.  Many said not to worry, it is probably something simple.    Probably not more cancer or new cancer.

I remind you that it was not an illusion the spots I saw.    There were three.   I was certain that it could be a melanoma.  They could not be washed away.  They were there.

Most of my life I have felt fairly undeserving of goodness.  Each new day that arrives brings to me another opportunity to love God more and more.  With each new realization of His grace I recognize how much more I can do.  I love God so much.  I get so surprised when my prayers are answered, not because I lack faith in Him, but because I just don't feel like I deserve it.

Within 2 days I was seen for an examination.  I was very nervous.  After a thorough examination I was told that there is nothing new and there are no spots anywhere.  I didn't believe her.  I looked and looked for myself and found nothing.  Nothing.  The spots were gone. I was so shocked and relieved and thankful.

The only thing that can be said is that the people I love were sending prayers and well wishes to God.  Even if it was not a conscious prayer, it was heard.  There is no other explanation for the spots to have disappeared.  I am so grateful for the prayers and of course to God.

Even if you are not sure of God, ask for His help.

I am excited that I could be here for my 50th birthday and look forward to being of value to my family and friends, my neighbors and community.

Thank you for being there.

Love,
Denise

MUGA scan tomorrow

I remember we'll the days of my young adulthood when the only reason I didn't travel or do more was because I didn't want to use up all my vacation.  Being naive I thought those kinds of sacrifices would protect me somehow from injustices in the world of work.    Hence, no trip to Hawaii, no cruise, no east coast bed and breakfast tour in the fall.  

I also recall wondering if I had made the incorrect degree choice for college.  I wanted to help people, but not break my back doing it.

How could both of these problems be avoided for other young people?

Encourage them to volunteer doing something related in the same or similar industry, before college. Help them land an unpaid internship the summer of their freshman year in high school.  

Really risk it and see if they can wait one year after graduation to either do an internship or travel and work in a job similar to the career they are saying they want to do.

If we wait to do our heavy and important life building travel until we are older, our bodies may not be up to the task.   I'm just saying.....

I have a MUGA scan tomorrow at SCCA.      http://www.cancer.net/all-about-cancer/cancernet-feature-articles/-tests-and-procedures/muga-scan-what-expect

I have been on Chemo for a year.  

I am so tired.    I need 12 to 14 hours of sleep per day.  I start to feel a tired again after being up for about 8 hours.  My body broke out in the last few weeks with all kinds of blisters, yuck.    That is also from the chemo.   Oh happy day.

Will post again in a few days.    Next chemo is March 4th.

Had the best time with mom over weekend watching Flight and Beasts of the Southern Wild.  Next is Argo.


love you all lots and thanks for checking in

Denise

La La La La La La La La Laaaaaaaaaaaaaaaa

Below is a copy of an interesting article about a pilot study on the effects of music on the health of cancer patients.  I am expecting that it will show that people believe to feel better and hope that it will reveal some form of stabilization on the effects of medications.  Even better, a reduction of the negative side effects.

To give you an idea, during chemo you are very fortunate if you are receiving your medications in an area that can be closed off and kept quiet.  I know that when I get the opportunity to have a bed and a door I am much more relaxed.  It is really stressful to hear all the beeping IV alarms and nursing call buttons, other people's TVs and music and conversations and people going up and down the halls.

When the room is quiet, it makes an amazing difference and is very calming.  If the environment could be even more improved to offer music, it could help alleviate bad side effects and distract someone from anticipation of side effects as well. (I have an Ipod given to me by my brother, but I forget to bring it sometimes.) 

I can also say though for me that 90% of the time I'm sleeping through the bulk of chemotherapy, even if I have not been given benadryl.  I am so chronically tired that when I can sleep in a comfy bed and not have to worry about anything because the nurses are right there, I can relax too.  I slept 15 hours or so on Sunday again, slept til 1:00 pm today.

I remember when mom was going to dialysis and I just felt terrible for her and the other patients.  The dialysis machines sound like slot machines.  No joke, not at all.  The volume cannot be turned down.  Each person on dialysis cannot move their arm during the transfusion.  Slight changes in movement or flow or anything cause the machine to sound an alarm, and they sound off constantly.

I am so glad she isn't needing that right now.

Anyway, I digress.  I wanted to share this interesting pilot study with you because maybe you can find a way to incorporate music into your life in a therapeutic way if you are receiving chemotherapy or have any major stress in your life.  

Love,

Denise
.........................................................
Source:  http://www.news-medical.net/

Study investigates whether music therapy reduces stress in cancer patients

Published on February 19, 2013 at 9:20 PM 

A Saint Louis University Cancer Center pilot study is investigating whether music affects the health of cancer patients by soothing them and making them less anxious.

"We can see that some of our cancer patients who are undergoing treatment are showing signs of stress because their blood pressure is higher and respiration rate and pulse is faster than normal. Our goal is to see if music can help bring those vital signs into a more normal range," says Crystal Weaver, SLU Cancer Center's music therapist and a study co-investigator.

"There are a lot of reasons cancer patients feel anxious when they come in for treatment. They may be dealing with unpleasant side effects of medications, such as hair loss or nausea. 

Sometimes they are thinking about how their illness impacts their family and finances and their ability to continue working. We want to find the best way to use music, which may not cost as much as other therapies and has no negative side effects, to help reduce their anxiety."

The study looks at three groups of cancer patients - those who hear live music performed during chemotherapy infusions; those who receive music therapy in their hospital or exam rooms; and those who do not have music as part of their treatment.

Researchers will measure the study participants' body responses - blood pressure, pulse and number of breaths taken per minute - and note their answers to a questionnaire developed by psychologists to detect stress. For those patients in the music groups, measurements will be taken before and after they hear music while they are receiving treatment.

Some study participants will hear musicians from the St. Louis Symphony, SLU School of Fine and Performing Arts students and Maryville University music therapy students, who play music in SLU Cancer Center's infusion room.

Others will be able to choose the music they want to hear during a one-on-one session with a music therapist.

"Patients request anything and everything - country, religious, musicals, music that was popular when they were in their teens and 20s. I take the music they like and play it at 66 beats per minute because previous research shows that tempo helped well adults relax," Weaver said.

"A pulse of 60 to 72 beats per minute is considered normal and we're hoping to match our study participant's pulse to the beat of the music. Once the heart rate begins to slow, the patient is more likely to take deeper, slower breathes and his or her blood pressure could drop to a healthy level."

The phenomenon of synchronizing the rhythm of the music to a patient's heart beat is called entrainment. It occurs when one person matches the pace of another so they can walk together or when the pendulums of two clocks near each other swing in the same motion.

<< Continued from Previous page

Participants in the one-on-one sessions also will receive a specific type of empathetic, nonjudgmental therapy that opens patients up to participate in art and movement therapy with good results, Weaver added.

If the study shows that after music therapy, the pulse, blood pressure or respirations per minutes drop or patients' scores on the questionnaire to detect anxiety improve, more research into the benefits of much therapy will be justified, Weaver said. Future research could hone in on how much anxiety levels decreased after music therapy and how reduced anxiety affects a patient's recovery time, complications and willingness to comply with treatment.

The SLU Cancer Center is the only cancer center in the area to have a full-time music therapist on staff and the first to establish a partnership with the St. Louis Symphony.

Mark Varvares, M.D., SLU Cancer Center director, received a national award in October for his advocacy work for music therapy from the American Music Therapy Association.

Varvares is the principal investigator of the study.

"While there's anecdotal evidence that patients who have music therapy after surgery need less pain medication, this research project is among our first to explore the connection between music and healing," Varvares said. "The pilot cancer music therapy study is a step toward helping us to better understand music's effect on health."

Source: Saint Louis University Cancer Center

http://www.news-medical.net/news/20130219/Study-investigates-whether-music-therapy-reduces-stress-in-cancer-patients.aspx

'Master' proto-oncogene regulates stress-induced ovarian cancer metastasis

'Master' proto-oncogene regulates stress-induced ovarian cancer metastasis

A quote from the article:

"Building on the Stress-Cancer Connection For the past 13 years, Sood's research efforts have focused on the effects of chronic stress on cancer metastasis. The latest study helps form a more comprehensive picture on the impact of and biological mechanics of chronic stress on ovarian cancer, as well as the role of beta blockers in slowing disease progression. Previous studies have shown:"

I am sort of obsessing a bit on stress, cancer, and how much we need to understand about cancer growth.  The article is very interesting and hopefully will motivate all of us to find ways to better manage our stress.

I have my chemotherapy tomorrow and wonder if there has ever been a valid and reliable study where participants were allowed to stay in some sort of retreat, far away from worries and agitators.  Would it show significant benefit in comparison to others of same cancer type and age range?  Hmmmm

Better yet, lets just assume that stress always makes cancer worse and build up resources for patients, family, caregivers and treatment facilities to simply offer more options to reduce and prevent stress.  Why wait for more research on this?  

We can feel that stress hurts us.  Cancer is a major source of stress on it's own, for the patient and all who love them.  The fear of death, the anger, the pain, the losses.  

Not long ago I thought "That's what I'll do, I'll start a foundation that raises money to build little health getaways all over the world so people who are sick can get break from this madness".  I have no energy for that, but it's a great dream.

I would never turn down an opportunity for our family to have an all out get together at a beautiful place away from the chaos, for just a moment in time, to heal our souls, laugh and play once again. But no matter where we go, we take our pain and our fears with us, unless we find a way towards inner peace.  

Forgiveness

I will dream of paradise, heaven on earth and try to remember what my body felt like when I was a kid.  I will think about what it's like to be a little baby or toddler, and laugh at all that is silly.  I will think of my family and embrace love.  I will feel the love of God and believe in His healing.  I will have faith. I will keep finding more ways to forgive and pray for forgiveness of my own sins.

Your faith may not be my faith, but not the matter, for it is based in Love.  

On a side note:

I may watch "Love Actually" later in the week, maybe before work, too.

It reminds me of the last time I saw it.  My sweet sister had come to Sacramento after my initial debulking surgery and one night we just watched the movie.  I was in terrible pain and could not walk down stairs. I was stuck up in my rented room.  Being with her, getting a much needed reprieve from cancer talk, watching this amazing gem of a movie is one of my most treasured memories.  

Good night and love you all.

Denise

Talking about Death....And Living

 I have a very special and dear friend in California.  She knew me before cancer and before cancer I can honestly say I felt like she was a soul sister.  She was my confident and teacher.  She still is to this day.  When we talk the calls grow into discussions of "important" matters, God, Helping, Living, Peace, Being a change agent in some capacity, doing the best possible, living art, being art, laughing at what cannot be changed and finding love and joy in whatever comes.  

Griefwalker by Tim Wilson, National Film Board of Canada

She posted a private message on Facebook of a fascinating video about palliative care.  I respect that for some it may not be something you want to see, but if you can, listen.  I felt a sense of peace about death after the video, just a little more peace.  That peace is priceless.  Healthy or not healthy, I believe this short film will bring you something good.

My dear friend brought something very good to me and I want to thank you so much  Barb!  Hugs and Peace to you.  

To you my dearest readers and followers, my heart is with you. 

Change Is Certain

My sweet Marilyn, exhausted after watching over me literally all of Saturday into Sunday.
She never leaves my side when I'm really sick.  My sweet kitty kat...

Here I am, listening to an MP3 of the Album from "Love Actually."  Not the original artists, but it will do.  The music from this movie is so perfect, actually.  I needed to give myself some down time this evening to partake in an activity not related to cancer or paying bills or cleaning.  Over the years I have neglected music, neglected listening to music that makes me happy or want to dance.  I have not a clue as to who is hip or popular right now.  I used to know all that stuff, but after I got cancer I just lost interest.  

Balance is lacking in my life, so one area in desperate need of attention is music, so here we go.  I added the amazon cloud player to my roku and will be streaming my favorites, in addition to using Pandora more.  Gee, I remember in the early 90's I must have had hundreds of CDs, some old vinyl and even a few 45rpm records.  I miss them.

I knew all the songs on all the albums and CDs.  I knew the good stuff, not the stuff that got air time, but the real music that you had to look for.  It was easier then too. No programming and uploading and downloading and managing a playlist.  It was called a record or a CD.  You either popped it on top of the record player or put the CD in the CD Player.  But, we must adapt to change, whether it's in how we listen to music or cope with an ongoing medical challenge.

I had chemo last Tuesday, after CT scan on Monday and oncology appt prior to chemo on Tues.  Last week was just plain old busy.  Had to work too and go again to the cancer center on Thursday for hydration and neulasta.

Regretting not getting the extra IV of Emend.  It was scheduled for day 5 or 6 post treatment and we weren't there yet.  I felt like I was managing, so I went ahead and let it go.

Just like clockwork, I woke up Saturday morning, feeling like a clamp was on my head, nauseous, barely able to get up for water and meds.  Slept through to Sunday noon, except to call work twice to call in sick.

It is Sunday night, feeling queasy, but able to be up.  My sweet mom bought me some soup, mashed potatoes and flowers.  How sweet.

So what did the doctor have to say, you may be wondering?

Well, she had great news!  On Lipodox, my tumors are slowly either shrinking or have stopped growing.  Progress is defined that we are reversing a trend.  We discussed in detail my quality of life, because this last treatment was the 11th treatment in a row.  How am I doing on Lipodox was the key question for me to answer.  My question was "how is the Lipodox doing?"  Everything was clearly answered and I feel good about my decision.  I will continue on Lipodox for 2 to 4 months at least.  Will see oncologist again in March.

I can manage the side effects, but not without "help".  I can't work more than part time and sleep all the time.  I do have the option to halt treatment to give me a break but she was fairly clear that if I stopped, even for a bit, I could develop a resistance to Lipodox. That would leave the tumors alone to continue on their path of destruction, not the best idea for now.  

I am going to do all I can to support the chemo, possibly ridding my diet completely of process sugars/carbohydrates.

So as I look at my lovely Christmas Tree, listening to "both sides now", I am feeling once again that I need to re-establish my footing.  After I take down the tree and tackle some paperwork this week, I am going to work harder on the basics.  Sleep, exercise, nutrition, happiness where I can provide it and receive it.  Spiritually I feel less whole.  Only because I have not gone to mass often enough.  

So for those of you who are effected by ovarian cancer (any cancer), first time or recurrence, things change.  For better and for worse, it is constant.  I have learned since the fall of 2009 that there are predictable outcomes, but may outcomes are positive.  I don't put myself in a box anymore, but being too aware of statistics hinders me a bit.  Oh well, have to be informed.  What I am trying to say is to set aside what doesn't matter, keep good notes and be open and flexible.  Trusting your medical team is critical in this process.  I fully trust my gynoc-oncologist.  

My prayers were answered.  Last Tuesday I asked God if he would be kind enough not to give me bad news.  I literally said that if the tumors are still there, that is OK, as long as they aren't growing.  God is Good. 

So the plan is to take each treatment one month at a time, do the best I can to live a healthy life and continue to pray and seek support as needed.  I am also getting some additional help for little panic issues, which is very valuable.  

Mom is healing, life is getting more stable and all I want is for my family to find peace, joy and love.  

I pray each of you find a way to cope with certain change that comes with each new day of our lives.

Love you much,
Denise

Screening for ovarian cancer, Huge News!!!!

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Patches of Blue

The warehouse was grim and dark.  Round tables covered with tattered cloths were scattered throughout.  The large room was divided into one third and two thirds.  At each table sat someone that I had somehow met in my life, many of whom I did not remember.  The attendees were all decked out in fancy clothes and sparkling jewelry.  Each looked at me as I moved through the room.

I saw one man with diamond rimmed eye glasses and a white suite.  Everyone had aged at least 20 years since I had seen them last.  One group of people walked by, and in the center was an old crush, he still had the same blue eyes and striking white hair.  He walked past me, glanced at me, and then continued as if we had never met.

One of my very best friends had lost a bunch of weight and she donned a golden dress and glamorous hat.  She walked to the back of the room and into the smaller third of the building.  Just as did my old crush and several other people who I deeply cared for.  As the ones I knew closely went to the back and out of view, the one's I did not recall seated themselves at the tables in the front two thirds of the room.  The walls were not painted and the floor was cracked.  One long bench ran the length of each wall.

On the benches were men with knives and women who carried bright blue books and little blue patches that looked like band aids.  I would find out that the patches were the difference between life and death.

I stood there for the longest time and watched carefully as each person entered the room, and I watched where each either sat or disappeared into the back.  My sweet kitty cat Marilyn was with me, in my arms, watching over me, like she always does.

One of the men stood up from the bench and said something to me in a language foreign to me, and it was not something good.  I became very fearful as he grabbed me and put me in a choke hold. I could see a knife coming into view from behind and knew he was going to slit my throat.  Just as he was about to cut me, one of the women with a blue patch and blue book waved her hand at him and quickly placed the patch on my neck.  The monster stopped and backed away in anger.  I was shaken and scared.  I ran off towards the back of the room and the patch fell off of my neck.

Just as it hit the ground, another man grabbed me and tried to use his weapon on me, just exactly same way.  I felt like I was in one of those wicked video games, the hunted one, the prey.  My attacker was not human, more of a robot, mechanical in nature.  Each time as before, a black scarfed woman placed a blue patch upon my neck and the attack was stopped.  The man would sit back down and glare at me.  All of these attackers were following me, each with a knife.

These attacks happened repeatedly as I walked from the front of the room towards the back of the room to be with the people I knew.  With each blue patch only lasting a few moments, I was quickly attacked over and over and over and over.

Exhausted and frazzled to the bone, I finally entered the back room.  I was carrying my cat and as soon as we crossed into the safe zone, she jumped out of my arms and disappeared into a fog.

The smaller room was freshly painted, and filled with my friends who were laughing and having a good time.  My old crush was off in the corner with his girlfriend and my old friend was dancing in a conga line, still wearing her golden dress and hat.  We will call her Kairee.

Kairee had changed her life from when I had known her a long time ago.  She was very happy now, after losing weight.  She now was happily married and owned her own mortgage company.  She pulled me aside and said she wanted to give me a chance to get back on my feet.  She offered me a job but my heart sank because I hated sales and had done this before. I was not good at things like this, having never been successful at any job that was purely for the money.  I knew I would fail.  I had no choice though and could see that she was doing well, was stable and wanted for nothing.  So I accepted her offer.

My office was downstairs and she pointed me to an old wooden staircase deep in the fog.  She sat at her table, the room turned dark green, and her associates surrounded her wearing their black suits and high end shoes.  I did not receive a warm welcome, except for from Kairee.  She hinted not to worry and I went down the stairs.

The steps were many, probably over 20, straight down into the darkness.  The whole room was old, wooden, dusty and filled with furniture and broken crates and boxes.  A few light bulbs hung from the ceiling as I stumbled across what I could see as a floor.  I was lost and became swallowed up in the dungeon.

I became fearful that my cat Marilyn would never be found again, as I had seen her disappear in that fog and knew she had come down these stairs.  As I frantically started searching for her and calling for her over and over, screaming as loud as I could, "here kitty kitty, Marilyn where are you?", dozens of other cats appeared from out of nowhere.

Each cat had a feature similar to sweet Marilyn, but she was not in sight.  Each time I saw a cat, I would run up and try to catch it and see if it was her.  It felt like an eternity and I became exhausted looking for her.  I scrambled all over the place looking and looking and found myself running from the mechanical men with knives.  Once again being attacked and then saved by a blue patch.

While looking for my cat, one of Kairee's associates appeared to me and threatened me, saying I was not going to be approved by the company insurance policy and would not stay employed for long.  I was losing everything, my job, my cat, and fearing the loss of my life over and over.

Off in the distance was a fluffy old couch, maroon colored, made with cotton cloth.  

I pulled away the musty cushions and found my kitty cat and pulled her safely up in my arms.  Just as I did this my cell phone rang.  It was my brother asking how I was doing.  Thank God he called and woke me up from that awful nightmare.

I went back to sleep and did not wake up again until 5:30 pm.  That was my day today.  I have a CT scan tomorrow.  See my oncologist and get chemo on Tuesday.

Can't get that nightmare out of my head............sigh.

Hope you all had a better day...ha!

Happy 2013 Wish For You

Our family has survived one of the most challenging years of our lives.  Sweet mom on the upswing now after multiple hospitalizations, I am still on chemo, and other very endearing family members coping with new illnesses and lots of change.  We have also experienced joy with a very bright cousin moving on to Johns Hopkins, kids changing to better schools and opportunities to receive visitors from close family from far away places.

The little joys, coffee with mom, a short drive with my sister catching up and sharing a laugh or two, seeing my nieces and nephew play together, laughing and being real.  Hearing funny stories about aunts and uncles.  Seeing beautiful cards in my email box from a dear friend in California. Seeing mom get surprise roses from a friend.  Leaving the doctor office remembering the words, "things look better now".  Getting a text from dad saying I love you.  Getting to say I love you to my mom almost every day.  

Waking up to see my beautiful kitty kat purring over my face, hungry for her first meal of the day, but patient and graceful as she waits (except for the one day she nubbed my head with her teeth, guess I slept too long).  Marilyn gives me much needed laughter and love.  I feel like a little kid when I get to play with her.  She will chase a little ball.  She will run in and out of this little kitty tunnel, and have me chase her.  She will let me carry her around in little boxes.  (Still cannot download the video of her and singing around the tree but it is on my facebook page),

The little joys in life are what keep us going day to day.  My goal this year is to give more little joys than last year.  Leave my spaces cleaner when I leave.  Be even more polite and offer everyone a smile, even if I don't feel like it.

I am continuing chemo in January.  I am extremely fatigued, but am compensating for that.  I just work around it.  I make the most out of my awake time, work, be with family, and my kitty.  I work on my heartfelt causes to increase awareness of ovarian cancer and now have taken an interest in helping find peaceful ways to protect children in schools.

The tragic shooting at Sandy Hook Elementary School brought us to our knees.  This can never happen again. God Bless the survivors of Sandy Hook.

January is a much dreaded time of year, cold and dark.  It is the perfect time of year to clean out the clutter that takes us away from giving true love and joy.  I need to find more time to attend Church services, with my fatigue, I never wake up in time.  I have to do that, I dearly miss Mass.  But God knows how much I love him as I pray morning and night.  

My New Years wish for you is to experience and give more little joys to yourself and to those around you.  By spreading little joys, and giving more smiles, who knows how that one little action could energize someone to do something they need to do........because they felt a tiny dose of love.

Happy New Year to each and all of you.  I do love you all and pray that 2013 brings more joys, better health, more security and happiness for you and yours.

God Bless you and your family.

Happy New Year

Love,

Denise

My Christmas Wish

If this Christmas you had one chance to ask for a miracle, what would you say?  

My eyes are blurry from needing sleep.  How many of you are tired now, frazzled, conflicted? Are you wondering if you did what you needed to do to make those whom you love with all your heart to feel happy?  Did you do all you can to bring them joy?  Are there enough gifts?  Worried that someone special was forgotten?  Amidst all this are you weighted by the tragedy at Sandy Hook Elementary?  Wondering how those sweet families are coping?  Will they be able to rejoice in the birth of our Lord and Savior Jesus Christ?

This year has been really challenging for our family.  I cannot tell a lie.  My sweet mom, our heroin of life, our rock has been sick most of the year.  Long hospital stays, multiple heart attacks and serious complications from her diabetes.  We never made our trip to Bainbridge Island.  Today we were supposed to go out so she could do Christmas shopping for the first time, that was the plan. Instead she was once again very ill today and it broke my heart.  She has not yet had a chance to enjoy the celebrations of this holiday season.  I am praying on Christmas Day that she is freed from this pain and illness so that she can relish in the joy of seeing her grandchildren and daughter and son-in-law....and me too.

Many people in the family have been challenged with new illnesses, working more, surgeries and worries.  I have been in chemo since March of 2012.  Juggling chemo, side effects, fatigue, nausea, etc etc etc and working part time and fully participating in every way possible to help mom, in a way that works for her, has been rocky.  

Recently I am receiving psychological counseling to manage what may be true to the form anxiety attacks.  That sequence of abdominal pain followed by nausea followed by sweating and shortness of breath and panting, losing focus and just getting plain overheated all over is not actually a hot flash.  So now I am learning how to cope with that problem in a new way.  I never had these episodes before cancer. 

The blessing is that we are here to experience all of this suffering.  I know that sounds bad, but those sweet babies at Sandy Hook Elementary never had a chance to live long enough to experience such pain.  They are little lights in heaven with God.  

So now it's time to reflect on the blessings.  The pain and suffering that wreaks havoc on all of us is a blessing for Jesus suffered on the Cross for us, as God loves us so much that he sacrificed his only son to forgive us of sin.  We must forgive to find peace.  

So back to the first question, if you could get one miracle, one chance to have anything in the world, what would your wish be for Christmas?

I know what mine is.................I want for each of us to embrace the true meaning of love and keep that feeling for all of humanity, all living creatures.  Love one Another as God has and does Love You.  Rid yourself of hatred and destructive thoughts.  Leave nothing for the sickness to hold onto.  Love your neighbor as you would love yourself and trust in the Lord.  

I am so passionate about the future for our children to include loving environments and peace.  I got a little sidetracked but felt compelled to publicly state an idea that could help schools be just a little safer, without the use of weapons and armed guards.  This comes from a very deep core belief that children will be emotionally and spiritually scarred if they are constantly surrounded by people with weapons. It is wrong to do this to them.  

In order to foster a world of peace, we must trust, we must love one another.  It would be hard to create and nurture that trust and love while surrounded by guns.  It does not set well with me.  

I want our children to love one another!  I want you to feel loved, and that is my wish for you, to feel loved.  Know that God loves you, and I love you.

Merry Christmas to you and yours, and may all your Christmas wishes come true.
Love, 
Denise

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

https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl

Instead of guns, lets begin to bridge the gap from the horrors of yesterday to the peace of tomorrow. I am asking for people to join hands to create Rings of Hope, around their schools when the children return from holiday break. Parents, family, good citizens uniting together for the day to show the children WE keep them safe. No guns. No weapons. We can do this now. Keep watch and be their loving guardians while the other solutions are discovered.

We need to elevate schools and our children so that schools are a center of life learning, for not only math, science and language, but culture, arts, health, communications, sports, leadership and community building. This is the opportunity for growth.

Please go to Ring of Hope, Arms Across America and stand with and for the children at your local school, be their sentry for a day. This idea has incredible opportunities to grow beyond one day of strength. Please speak with other parents and see if they will join you.

All you need to do is just hold hands, be arm in arm, for the day that your child returns to school after the holiday break. When the children see how strong we are, and they see the love, they will feel safe. We don't need guns to help them feel safe.

Help to create a Ring of Hope around the school for that day.

https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl

https://twitter.com/RingOfHope

In Memory Of 26 Lights Of Love

http://www.usatoday.com/story/news/nation/2012/12/15/victims-connecticut-school-shooting/1771765/

Forever we will remember these beautiful innocents:

Charlotte Bacon (2/22/06), 6 years old, female

Daniel Barden (9/25/05), 7 years old, male

Rachel Davino (7/17/83), Staff member, 29 years old, female

Olivia Engel (7/18/06), 6 years old, female

Josephine Gay (12/11/05), 7 years old, female

Ana M. Marquez-Greene (4/4/06), 6 years old, female

Dylan Hockley (3/8/06), 6 years old, male

Dawn Hochsprung (6/28/65), Principal, 47 years old, female

Madeleine F. Hsu (7/10/06), 6 years old, female

Catherine V. Hubbard (6/8/06), 6 years old, female

Chase Kowalski (10/31/05), 7 years old, male

Nancy Lanza, 52 years old, female (mother of shooter Adam Lanza)

Jesse Lewis (6/30/06), 6 years old, male

James Mattioli (03/22/06), 6 years old, male

Grace McDonnell (11/4/05), 7 years old, female

Anne Marie Murphy (7/25/60), Staff member, 52 years old, female

Emilie Parker (05/12/06), 6 years old, female

Jack Pinto (05/05/06), 6 years old, male

Noah Pozner (11/20/06), 6 years old, male

Caroline Previdi (9/07/06), 6 years old, female

Jessica Rekos (5/10/06), 6 years old, female

Avielle Richman (11/17/06) 6 years old, female

Lauren Rousseau (June 1982), Staff member, 30 years old, female

Mary Sherlach (2/11/56), Staff member, 56 years old, female

Victoria Soto (11/04/85), Staff member, 27 years old, female

Benjamin Wheeler (09/12/06), 6 years old, male

Allison N. Wyatt (07/03/06), 6 years old, female

Like many people today, I am shocked, dazed and deeply saddened by the killing of 26 innocent women and children at Sandy Hook Elementary School yesterday.  As I write this I am not even certain that the event happened yesterday, time escapes me.  Writing out a few thoughts helps to recalibrate this feeling of being lost, numb, tearful and worried.  With that, trying to comprehend how it feels to be in Newtown, CT. Complete immersion in the devastation and grief.  A sense of calm comes forth knowing that the people are reaching to God and to each other as they move through this painful time.

It brought back the crystal clear memories of Columbine High School, the radio announcement, the snowy cold day, and me pulling into a parking space in downtown Denver to sob.  Looking at the guy in the car next to me, doing the same.  

At Sandy Hook Elementary the majority of the victims were sweet little children, just babies.  To try to make sense of this or understand reasoning behind this madness seems futile, but we will try.  

As a person who thinks about death far more often than one should, the greatest fear about death is suffering through it.  We will never know the extent to which those sweet little children and their heroins suffered.  Too much to bear to think about.

Before this day, their beautiful little lives were immersed in simple joys like having a play date with a best friend, making a drawing in art class, baking cookies with mom and reading bedtime stories with dad.  It's really difficult to grasp the overwhelming awareness of how in just a mere instance of time, this community was forced to their knees.

Breathe deeply for a moment .................

Our capacity to love is grand and in spite of this horror, more of our neighbors are good than bad.  More will help than hurt. More will protect than abandon.  

More love than hate.  

God swept up these angels into His arms at the moment of their death and they are protected and cannot be harmed again.  They will never fear again.

I found a proverb that sort of rounds out all the turmoil 29:26-27

"Do you want justice?  Don't fawn on the judge, but ask the Lord for it!  The good hate the badness of the wicked.  The wicked hate the goodness of the good."

Give your angst, your pain, your fear, your grief to God.  For God will take it and help you to be strong.  The families of these innocents need all of our strength and prayers.  They are weeping from a place that I cannot imagine.  

Rest In Peace Dear Innocents of Sandy Hook Elementary School

May the Lord's Blessings Be With You