CDC Symptom Diary Card

Tuesday, December 23, 2014

Happy Holidays From Servivorgirl and Merry Christmas

My sweet cat Marilyn and I are rejoicing in the miracle of our Lord Jesus Christ.  This is a bittersweet Christmas. 

My heart aches.  I miss my mom.  I am also very grateful to be alive on this day to celebrate the season of the birth of our Lord.  I love my family, friends and treatment team.

To my friends who celebrate in other ways may you be joyful and with peace this holiday season.

Seasons Greetings to all.

Love,
Servivorgirl



Wednesday, December 17, 2014

The Perfect Tree

Missing you all and needing to say that I wish I had the energy to write more often.  I am still sleeping 12 to 15 hours per day.  I had the pleasure of getting a short respite with family over the past few weeks and some interesting new things happened while I was there. 

It is worth noting that my Avastin dosage has increased because I continue to gain weight.  (The weight gain is an entirely separate post, too complex to even discuss.) Ha!  

Anyways, I was walking on the kitchen floor and heard a cracking sound in my left foot.  The popping sound that accompanied a sudden surge of pain and inability to bear weight on said foot sent me to the ER.  I had only been there an hour!  Ha.  I am now wearing a big walking boot and do have a fracture in my left foot.  

Then for two days non-stop I was bedridden with terrible nausea and an evil headache.  What???  I am  on vacation.  

We missed the local tree lighting ceremony with all the holiday extras.  I felt terrible for my aunt. Instead of us walking around the town relishing in holiday cheer she was busy taking care of me.  I love my aunt so much.  I plan to visit next year for a do-over.

Then, yes there is still more, I had to go to the ER a second time because I had unexplained chest pain, neck pain and pain with shortness of breath.  Geeeeeze leweeeeze!

They treated me as if I was having a cardiac issue or embolism.  This has never happened before.  I was panicky to say the least.  When it first happened the noise of the TV was hard to bear and I could not turn my head.  The pain along my neck was on both sides, intense and sharp.

I was given a nitroglycerin patch, IV Lorazapam and some sort of blood thinner. The ER staff and physician were incredibly polite and efficient. They drew labs for cardiac enzymes, checked my legs and chest for blood clots and admitted me for overnight observation. They drew two more enzyme labs over the course of my stay and performed a stress test on my heart. I was very impressed and am so grateful for receiving such a complete cardiac work up. 

After all of THAT, my heart is in good shape, thank you dear Lord.  

What the cause of this mysterious chest episode was, I do not know. If it happens again then I will be referred to a cardiologist, per my PCP.

So this is where we get to the "perfect tree" part.  I return from my vacation exhausted, sleep 23 hours, and sadly realize that I can't get my Christmas tree without help.

I was delighted and thankful to find two ladies who selected, transported and set up a tree for me. To honor my mom, who passed away last November, I wanted to purchase my Christmas tree from Swanson's Nursery.  Swansons was her favorite nursery, such a beautiful place.

My Christmas tree is the perfect tree.  It represents real life.  The curved trunk, uneven branches, the way it appears as if it might just topple over at any moment.  I checked, it is secured tightly to the stand. It will never look balanced and even.  My tree this year is not a calming tree. It symbolizes unexpectedness and awkwardess, sufferig and loss, yet displays beauty and joy.

My Christmas tree is telling me to stay alert.  It is also taking forever to decorate.  As I write this post I am yet to hang the ornaments I received after mom died.  The box is here, it is the last box of ornaments to hang.  

I will do that tomorrow and post a photo when I am done.

As we embrace these next few weeks of holiday joy, from all cultures and religions, I pray you find your spirit renewed.  I will be blogging soon with more Christmas cheer.....I hope.

Merry Christmas
Servivorgirl

 



Wednesday, November 26, 2014

Happy Thanksgiving


This day we give special thanks for all the goodness in our lives.  We think of those we love, those we've lost and those who are in need.  Even in our worst moments there is hope from God's love.  Never forget that you are loved.  God Bless you and your loved ones this Thanksgiving holiday.

Thank you God for this interesting and challenging life, and for all the love from my family and friends. 

Missing mom.  I love you mom.

Peace, Blessings and Love

Servivorgirl


Thursday, November 20, 2014

The Holidays In Small Doses

Ladies, I am thinking about those of you who are on your first course, or any course, of intensive chemotherapy. This time of year is an exceptionally difficult time to be experiencing side effects from surgery and treatments.  

I had spent several hours drafting a lengthy and detailed post that I was hoping could assist you in preparing for Thanksgiving.  God had other plans.  It got deleted, poof!  It must have been too long, ha! 

Do as I do, they say.  Here is the abbreviated version.

Maintain the essance of the holidays with simplicity, in every way.  Truly, keep things simple.

Mimimize expectations.  Worry not about tradition and what people think.  Trust in the people who love you. Let people help you.

Your body, mind, emotions and spirit are in turmoil.  Simplicity will help you keep your feet on the ground.

If you are a woman of faith, ask for God's help.  Ask people to pray for you.

I sigh heavily remembering how overwhelming everything felt during that first course of treatment, still in severe pain from my debulking surgery.  Experiencing the holiday season in small doses is just easier. 

I did wonder about things like how many more holidays do I have with my loved ones.  That is normal, for the most part.  Spreading out the opportunities to be with the people you love may help deflect some of that worry in your heart. 

If there is only one major event to attend, an enormous amount of pressure exists to make the most out of THAT one thing.  Instead pencil in more options for smaller manageable events here and there. If by chance you are feeling beat up on the actual celebration day, your cup will still feel full.

Well, you know what I mean.      

As the old saying goes, don't place all your eggs in one basket.  

I just want to avail myself as a sounding board.  I love this time of year.  I am so thankful and grateful for my family, friends, doctors and to God that I am here.  What else can I say?

Hugs.

Peace and blessings,
Servivorgirl










Saturday, November 15, 2014

World Vision.org and Medgift.com

Sometimes we feel like the wind gets knocked out of our sails. Yesterday was definitely one of those days.  I have been spending time preparing to honor my mom on Sunday, as it would be her birthday. November is a hard month now, the anniversary of mom's passing, mom's birthday and moving through Thanksgiving, her favorite holiday.

Lot's of grief this month.  When I saw Diem Brown had died from ovarian cancer I cried.  She was a truly spirited and cheerful warrior. My tears reflected so much loss in our family and the knowingnes of another fighter removing her gloves.

I miss my mom so much.  Sunday I will celebrate her birthday with prayer and fond memory, looking at photos.  I feel kind of crazy, but it comforts me to talk to her whilst adoring her photo.  Sometimes I just stroke the hair in mom's photo and tell her how much I love and miss her.  I tell her I am sorry for being such a bratty teenager, for not being nice all the time, for fighting with her on our trip to New Mexico, for not spending enough time with her, for being a total failure as far as career goes and for not using my brain like I should have.

I can go on and on.  I pray that she is the first angel I see in heaven one day.

I am exhausted from treatments and grief but look for colors and light throughout each day, as I have nothing to complain about. 

I am sharing two different things today that I hope will inspire you.

1.   Here is a link to an interview with Diem Brown about her heartfelt charity, Medgift.com.  A patient gift registry that eases the burden when sick and in need.

http://video.foxnews.com/v/1513484978001/reality-star-launches-patient-gift-registry/#sp=show-clips

2.  I have sponsored a child via World Vision who shares the same birthday as my mom.  This sweet child and her family are in great need and World Vision is one of only a few international charities trusted by mom.  World Vision also helps children in the United States.

I felt a little funny filtering by birthdate, but I did accept the very first child that came up in the search.  I wanted to sponsor all the kids, ya know what I mean?  

So one unique way to honor a loved ones's passing is to sponsor a child in need. It is very fulfilling and most of all provides tangible resources and goodnes that can offer hope to the suffering.


I Love You and Miss You...........

Peace and Blessings,
Servivorgirl

Rest In Peace Sweet Diem Brown

REST IN PEACE SWEET DIEM BROWN



Please select the link above for one of the many stories about this young woman's life.  Ovarian cancer may have claimed her body, but her spirit will live forever.

This news has broken many hearts today.

A star on earth is now a star in the heavens.

May we find a cure so no more women die.

Sunday, November 09, 2014

When Susan Talks, People Listen

Those of us in the world of ovarian cancer can often feel that we are in a little bubble, off to the side, having a small voice in the big world of cancer.  We are reluctant participants, not all wanting to share our stories. When we do share, we do so in different ways.  Some keep their pain and suffering close, opening up only to close friends and family.  Some unveil their agony in the way of art, music and writing. Others reveal their angst in the way of talking and reaching out in person.

I know of one such angel that can comfortably speak about her ovarian cancer and her name is Susan Malman.  She is very outgoing, high spirited and courageous.  Her chummy personality has drawn many supportive people towards her.  She has stage 4 ovarian cancer, suffers greatly, yet creates the time and energy to go out into the world and have fun.  

Seriously, this chick loves to enjoy life.  She will find a way to go out to a concert, sing karaoke or meet her friends, all the while experiencing chemotherapy side effects.  Not much can keep her down.

When she is out and about she tells people about her cancer.  Susan puts herself out there because she wants to help other women to learn about what we know today to be common symptoms of ovarian cancer.  It makes a difference.

Susan literally helped to save one woman from being diagnosed at a late stage of ovarian cancer. Had Susan not taken time to express with passion the accounts of her life and struggles with ovarian cancer, one woman may have discovered her fate too late.  God Bless you Susan.

Here are Susan's humble words......

About a month ago I had chemo and went to the gas station up the street for some ice. The girl asked me what cancer do I have and I told her ovarian stage 4. She asked what are the systems. I told her and gave her a card with the sytems on it. She told me she has all the systems. I told her don't waste time, have certain test(s) done and insist on it.

She did. A month later, I saw her tonight. With a huge line, (she) came around the corner (she) gave me a big hug, and said "thank you because of your story and making me get checked they found I have the early stages of ovarian cancer. Now I am being treated".

So now I feel so good inside that after 3 years of fighting it I helped someone and saved their life.





Thursday, October 30, 2014

St. Peregrine Pray For Us

I have prayed many times for the intercession of St. Peregrine, the Patron Saint for those ailing with cancer and other very serious illnesses.

It is exceptionally difficult to convey the depth of emotion, faith and hope in prayer via my little blog.

I have prayed to St. Peregrine for myself, for people that I love and for my cancer bearing sisters and brothers.  I believe.

One evening, after nine days of praying the Novena to St. Peregrine, I knew I was sent a message.  I was in a hospital and a physician, who went by the name of Dr. Peregrino, stepped on the elevator.  I knew his name only because a nurse called out to him just before he stepped inside. 

The doctor looked right into my eyes as if he knew me. This happened directly after receiving exciting news that someone I love did not have cancer after all, it was ruled out.  Because of the intense way this man looked at me, his name, and the feeling I had at right at that moment, I knew St. Peregrine had heard me.

A prayer to St. Peregrine
Dear St. Peregrine, I need your help. I feel so uncertain of my life right now. This serious illness makes me long for a sign of God’s love. Help me to imitate your enduring faith when you faced the challenge of cancer. Allow me to trust the Lord the way you did in this moment of distress. I want to be cured, but right now I ask God for the strength to bear the cross in my life. I seek the power to proclaim God’s presence in my life despite hardship, anguish, and fear I now experience. O glorious St. Peregrine, be an inspiration to me and petitioner of these needed graces from our loving father. 

Amen.

If you visit this website, you will see many more prayers to St. Peregrine and learn about his history.

We need LOTS of prayers, especially with respect to the cost of chemotherapy.

I just read a very disturbing article on Times.com that Genentech is unnecessarily altering its distribution channels for Avastin and two other critical cancer medications, forcing the prices to go higher. This is a prime example as to why medical care must not operate via supply and demand frame of reference. 


Peace and blessings,
Servivorgirl

Monday, October 20, 2014

Ovariancancer101.org, What A Wonderful Group

Now back to the core of the reason I started this blog, to raise awareness for ovarian cancer.  I want to introduce you to an organization started by a womderful woman who sadly lost her mom to late stage ovarian cancer.  How it was discovered will shock you.

Ovarian cancer is very tricky indeed.  Scary tricky.  Please visit this site to learn about her history and also about a beautiful treasure being promoted to raise funds.  I personally do not raise money, but periodically will write about others who do.

This Christmas tree comes with gifts!


Decorated-Christmas-Tree-And-All-The-Presents-Current-Value-$7-400-Drawing-To-Be-Held-Saturday-December-13th-@7-45pm-Tree-shown-is-our-2013-tree/p/29213750/category=0


I would love to have a beautifully decorated Teal Christmas tree in my apartment this year.  Time to buy a ticket.

Please visit  Ovarian Cancer 101.org for more information.

My next post will be about one of my favorite Saints,  Saint Peregrine.

Peace and Blessings,
Servivorgirl


Wednesday, October 15, 2014

Ebola Protocol Manual

chttp://www.voanews.com/content/ebola-september-3/2436904.html


If you are reading this post in real time you are probably aware that most hospitals in the United States are not prepared to properly treat patients with Ebola virus and congruently keep healthcare workers safe.

I cannot imagine why this is a problem.  We have had plenty of warning and there are links that provide detailed protocol on how to meticulously protect both the patient, other patients and anyone who comes into contact with the patient and patient fluids.

Here is a very detailed link that is designed for healthcare administrators to understand fully the scale of supplies, type of personal protective equipment and how to donn and doff the equipment.

Although this is written for field hospitals, our US based hospitals need to follow the core elements exaxtly as written.  It seems to me that training would be based on this kind of manual.  

That nurses and other employees at the hospital in Dallas did not have this information as part of a required training is criminal.

This link advises on two pairs of gloves!  Head to toe coverage and a separate changing area.  It is 209 pages.  There is no excuse for any hospital administrator's lack of preparedness.

We as individuals also need to take personal responsibility as well.  No matter what the situation, we must at all times be aware of personal risk and safety, either as a patient or caregiver.  We need to speak up right away and if nobody is listening, keep talking until someon does. It can literally be a matter of life or death.

People with cancer just need to be minful that it is beneficial to us to always keep protective gear on hand, especially when travelling.  Items such as masks and gloves are very important because we cannot predict when or where we will encounter a situation wherein someone else is sick.  Keep these supplies in a sealed bag, such as a ziplock bag, along with alcohol swabs and antibacterial gel.

CDC Manual     The Pdf link is at the bottom.

I hope someone finds this manual useful, as it is very thorough.

Peace and blessings,
Servivorgirl







Saturday, October 04, 2014

The Male Side Of Breast Cancer

The colors on the wheel go round and round......round and round......round and round.

Before I begin my posts for October I want to thank "Curves" of Crown Hill, in Seattle Washington.  The owner of this franchise graciously allowed me to bring in gynecological awareness handouts created by the Seattle Cancer Care Alliance.  "Curves" was hosting an open house and I had some table time with many members while distributing valuable information about gynecological cancer awareness, and my story with ovarian cancer.

We utilized the information found on the CDC "Inside Knowledge" Campaign and I am pleased to report that many women stated that this information was very helpful.  This way they not only learned about ovarian cancer, but all the major potential symptoms of gynecological cancers.

I was pleased to do this and hopefullly a few more women will be able to work more effectively with their physicians, should they have a concern in the future.  It also brought to the surface an opportunity for several women to talk about either their own or another's battle with some form of cancer.  

Thank you "Curves".  I also decided to become a member.  The program is not hard on my smaller joints (currently in a bit of trouble due to RA) and I really need the extra support.  I am finding this program comfortable, adaptable and most of all, FUN!  I will post progress, if it's good.  Ha!

Now to Men's Breast Health:

To start October off I thought it would be important to incorporate some information about hereditary breast cancer, in men.  My search landed me on a very thorough and educational article written in Medical News Today. 

Men are not likely to see themselves as potential breast cancer patients.  They can and do get breast cancer.  We can see that men all over the country do support this cause. Most men probably never considered that wearing pink can help them too.  Please share......

Quote from Medical News Today....

'It is vital for everyone to be breast aware'

"Women are encouraged to frequently check their breasts for any abnormalities, such as lumps, discharge from the nipple or changes in appearance or texture. And although many men may not be aware of it, they should do the same.
The most common signs of breast cancer in men are lumps or swelling in the breast or lymph node areas, dimpling or puckering of the skin, nipple retraction, nipple discharge and scaling or redness of the nipple or surrounding skin."


Peace and blessings,
Servivorgirl

Tuesday, September 30, 2014

Gynonc Surgeons To Rock Our World In D.C. Oct 1, 2014

I have to say that I was elated and shining from within after attending a recent showing of N.E.D. The Movie  This uplifting documentary speaks so intimately and powerfully about the wrath of ovarian cancer, as voiced by the surgeons in NED The Band.  N.E.D. stands for "no evidence of disease".  That is our goal!

I had no idea what to expect, but what I felt was a sense of pure dedication and purpose.  These highly skilled and honorable gynecological oncologists are also gifted with musicality.  They use their events and cd inserts as a vehicle to start the conversation about ovarian cancer.  Their music though is for the masses.  They are a rock band through and through!

Please link to their homepage for more about their music, their movie and their mission.
N.E.D. The Band

I want to thank Deborah Binder for hosting the event in beautiful Edmonds, WA to raise funds for

Seattle F.O.R.C.E. Facing Our Risk of Cancer Empowered  and National Hereditary Breast and Ovarian Cancer Week

Here is a note from Deborah.... "I am so glad that you were able to attend the NED movie and that you enjoyed it.

Most gyn-oncs know N.E.D. because they have played many times at the national oncology conferences around the USA.  I first heard them one year in D.C. at the National Ovarian Cancer Alliance meeting.  I know that my doc.--Dr. Goff and Dr. Muntz know them.

Last October I traveled to Portland to see the movie--a fundraiser for the Southern Washington and Oregon Ovarian Cancer Alliance.  After I saw it I knew that I wanted to do a similar event for OVCA Awareness month in 2014.  I rented the Edmonds Theater (it's where I live and I wanted to use a small hometown theatre not a megaplex) and I rented the movie from Spark Media".

Hugs,
Deborah

....................................................................
if you live in the D.C. area........

Congresswoman Debbie Wasserman Schultz is hosting a movie event in D.C. on October 1, 2014.  Please spread the word so that more money can be allocated to fight these cancers.

Capitol Hill Screening
First Street Southeast
Washington

Website  LINK
Description Representatives Debbie Wasserman Schultz & Renee Ellmers present a Congressional screening of No Evidence of Disease, featuring a live performance and panel discussion with members of N.E.D. This special event will take place on October 1st, 2014 at 6:15 PM.
Email info@sparkmedia.org


N.E.D. The Movie Screenings link


Peace and Blessings,

Servivorgirl

Thursday, September 25, 2014

Fibronectin And Our Cancer


Ovarian Cancer Dream Team Call for Ideas Now Open

su2c logo
The American Association for Cancer Research is now accepting submissions of ideas for the new Stand Up To Cancer Ovarian Cancer Translational Research Dream Team Grant that will offer up to $6 million in research funding, which includes $3 million provided by the leading funder, OCRF.
The Stand Up To Cancer-Ovarian Cancer Research Fund-Ovarian Cancer National Alliance-National Ovarian Cancer Coalition Translational Research Dream Team grant provides three years of funding for research projects that must include therapeutic interventions for ovarian cancer and deliver near-term patient benefit through investigation by a multidisciplinary, multi-institutional Dream Team of experts. Proposals for the grant must describe plans indicating how the group will use a transformative and synergistic approach, and how the work will be translated into the clinic. To maximize creativity, innovation, and collaboration, the projects should span multiple disciplines and use modern scientific tools to attack research questions in a coordinated effort.
Letters of Intent for SU2C-OCRF-OCNA-NOCC Translational Research Dream Team Grant are due by noon ET, Nov. 7, 2014, via proposalCENTRAL.
Read the full press here.
FIBRONECTIN AND CANCER
Please take a moment to link to the article below, posted by the Ovarian Cancer Research Fund.   As a non-scientist, I found it invaluable towards my understanding of how ovarian cancer cells proliferate, specifically in the omentum.  Learn about fibronectin and its role in the spreading of cancer.
Peace and blessings,
Servivorgirl



Wednesday, September 24, 2014

A Hippo Has My Campus

I grew up in Colorado.  I consider the Denver metro area fairly easy to navigate. One of my jobs after college involved daily travel, criss-crossing across town helping people regain independence after illness or injury.  I really should know the basics and major Denver area streets, even if I have been away all this time.

I always had considered myself someone who was good with directions.  I always knew where I was, even when I was in a new city or town.  I rarely got lost.  I was never afraid to drive for the sake of driving.  I used to love to get in my car and go, just see where I would be.  I could never do that now, after all of this chemotherapy....eeks.

Even after moving to California, I was still the same, had a great sense of direction and rarely got lost.  It was one of the few areas that gave me confidence, my sense of direction.

Well, my sense of direction has gone kablooey.  I am not sad and will try to remember to adapt, but I find it extremely interesting that "navigation" is such a specific area of loss for me.  I also have difficulty with estimating time.  I am always late now.......sorry everyone.

I just got back from visiting family and friends.  It was one of the best short little trips ever.  Just plain fun and it was a real treat to see everyone.  I can affirm though that I definitely am not the same confident navigator that I used to be.  I got lost 5 of the 7 times I went to meet people.

I got lost going from the airport to see my dad.  I got lost going to and from my brother's house.  I got lost going to see an old friend, where I had been before.

I got lost going to Denver International Airport.  My flight back home was after 9 pm and there I was driving around the countryside in the dark, looking for alternate routes to Pena Blvd.  Maybe next time I will get GPS.  To be honest, I was a little nervous.....and somehow it all worked out.  I barely got to DIA in time, whew.  I thought I was going to miss my plane!

I have no idea how I found the airport.  I would have called to get help after a few more minutes of driving in circles, but I am sort of concerned that this chemo brain is getting worse.  It seems that I forget what I am doing, lose track of time and get lost on a regular basis.  Maybe it is not worse, just more noticeable?

I get lost going to my dentist every time.  So strange.  

I am linking a few interesting articles on brain function and chemobrain.  It is an area of high interest for researchers and it does seem that the hippocampus, an area responsible for navigation, can be damaged by some chemotherapy agents.

I can't believe I got lost going to the airport.  Ha!  I think I should get a GPS, what do you think?


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC45501/

Low Doses of Cisplatin Can Damage Hippocampus


What Happens When A Neurosurgeon Cuts Out Your Hippocampus

Love, 
Servivorgirl

Thursday, September 18, 2014

Penn Team Finds Ovarian Cancer Oncogene in "Junk DNA"

http://www.uphs.upenn.edu/news/News_Releases/2014/09/zhang/

For those of you interested in genetics, here is a fascinating article relating new findings with "junk DNA" and it's effect on BRCA genes and mutations.

I am not a scientist myself, it takes time to read.

What impresses me is that this particular type of research enables us to create a way to stop cancer if the links are proven and consistent.

There is always hope.  I thank my cousin for sending this to me from Penn State.


Peace and Blessings,
Servivorgirl