CDC Symptom Diary Card

Wednesday, July 25, 2012

Medications to treat Ovarian Cancer, returning to OC

Hello Family,


Last night I had a nightmare.  One of my old managers from the 1990's was in my dream and in the dream I was crying because I was being harassed.


It was so strange.  I was in a library that looked like a giant shopping mall.  I kept running from section to section because I was being chased by her, literally being forced to move because I wasn't "allowed" to educate myself.  I was forbidden to read or research information about my condition.  I guess I was trying to find out more information about a situation I was in, and she didn't want me to know my rights.  


It was like a game of hide and seek.  She would find me and make me leave the area and I would sneak back in and be caught again.  This happened over and over and over and over.  


When I'm on chemo my dreams are always very colorful and detailed and full of strong messages.  I always remember them in some way and often will continue the dream the next night.  


I'm literally remembering this dream as if it actually happened.  


I feel like it sums up a lot of life experiences for myself and so many others.  We get bullied all throughout our lives on different levels.  As kids, it's the bully who makes fun of you.  As you age, it turns into an awkward work situation or fellow parent on the school board or landlord from hell.  


We never really know though how significant these instances are until later in life.  I've had slumlords make my life very difficult and complicated.  I remember clearly the gal in school who gave me a hard time, changed me forever.  


As a patient, I remember a few health professionals who could use a lesson in decency.


Maybe my dream was a summation of all those experiences of when I could have either stood up for myself or researched something just a little more and gave myself more protection.  I didn't though, and when I did stand up, I always chose what seemed to be the "wrong" fight.


Now I am much much much better at choosing my battles.  I am more careful not to poke the wrong bear. I still make mistakes, but I make them less often.


All else is forgiven and tomorrow there will be a new battle.  Maybe I just needed a dream to collectively gather all of those moments in time into one event and just let it go.  


Cancer is enough for now.


On a different note, I came across a list of possible medications to treat OC and thought it would be good to re-issue it, thank you WebMD.


I know I saw this several years ago, but was too overwhelmed to really consider anything other than what was recommended by my fabulous gyn-onc, Dr. G.  I know I have been given the best chemo options considering my overall medical health.  I really trust my doctor.


For those of you who are new to ovarian cancer, this list may be useful just so that you are aware of all the options.


My recurrence is turning out to last longer than I had hoped, as my new Lipodox treatment plan continues into November.  I don't qualify for any trials because my medical condition is too complicated with having rheumatoid arthritis (RA).  RA is an auto-immune disease that effects multiple systems in the body, not just the joints.  


I feel fortunate that I have the Lipodox option and that SCCA  http://www.seattlecca.org/  was able to obtain this important medication.  The Doxil crisis sadly left many people without critical treatment. I AM so blessed. 


Love you ................ 


WebMD: Better information. Better health.

Considering taking medication to treat Ovarian Carcinoma? Below is a list of common medications used to treat or reduce the symptoms of Ovarian Carcinoma. Follow the links to read common uses, side effects, dosage details and read user reviews for the drugs listed below.
Your search for Ovarian Carcinoma returned the following treatments.
DRUG NAMEINDICATIONWhat's this?TYPEWhat's this?USER REVIEWS
Arimidex Oral  528 User Reviews
Femara Oral  376 User Reviews
tamoxifen Oral  350 User Reviews
Xeloda Oral  110 User Reviews
AVASTIN IV  110 User Reviews
hydroxyurea Oral  50 User Reviews
Hydrea Oral  48 User Reviews
anastrozole Oral  43 User Reviews
megestrol Oral  32 User Reviews
Taxotere IV  28 User Reviews
cisplatin IV  25 User Reviews
letrozole Oral  24 User Reviews
carboplatin IV  21 User Reviews
Adriamycin IV  19 User Reviews
Megace ES Oral  17 User Reviews
Gemzar IV  16 User Reviews
Doxil IV  15 User Reviews
cyclophosphamide Oral  11 User Reviews
gemcitabine IV  11 User Reviews
docetaxel IV  9 User Reviews
Megace Oral Oral  9 User Reviews
leuprolide SubQ  7 User Reviews
bevacizumab IV  5 User Reviews
cyclophosphamide IV  5 User Reviews
capecitabine Oral  4 User Reviews
topotecan IV  4 User Reviews
paclitaxel IV  3 User Reviews
melphalan Oral  3 User Reviews
doxorubicin IV  3 User Reviews
etoposide Oral  2 User Reviews
Alkeran Oral  2 User Reviews
Adriamycin PFS IV  1 User Reviews
Hexalen Oral  1 User Reviews
Hycamtin IV  1 User Reviews
Docefrez IV  Be the first to review it
Alkeran IV  Be the first to review it
melphalan IV  Be the first to review it
altretamine Oral  Be the first to review it
thiotepa Inj  Be the first to review it
doxorubicin liposomal IV  Be the first to review it
Onxol IV  Be the first to review it
Lipodox IV  Be the first to review it
Lipodox 50 IV  Be the first to review it

FIND A DRUG:

by name or medical condition or shape/color (Pill Identifier)

Monday, July 23, 2012

Aurora Memorial: We must make a change: National training program required prior to purchasing a gun of any kind.





http://www.nytimes.com/slideshow/2012/07/23/us/20120723_SHOOTING.html?smid=pl-share

My deepest condolences to the families of the victims, survivors and families of the survivors of the shooting in Aurora Colorado.  My home state and America and people around the world mourn your loss.  God Speed and Peace Be with You.

I propose that all people who purchase guns be required to have completed a training course prior to making the purchase.  This should be a Federal requirement, and a national registry of all people who have taken the gun safety course, gun ownership and current residence must be streamlined into one system.

Nobody needs to buy a gun in a hurry and nobody should be able to buy a gun without prior training on safe operation, handling and ethical and legal use of their weapon.

If the shooter would have been required to get to physically present himself to a training program operator, pass an exam and get a license that is certified and notarized,  he never would have passed.

I am not a fan of taking away our right to bear arms, but owning an assault rifle is ridiculous.

We need a license to drive a car.  We need a license to operate machinery.  In this country, you must pass a test to be a notary public.  Guys who work construction can't operate a forklift without going through certification for crying out loud....................

YET, in this country we allow people to buy weapons without knowing that they are trained on safe and lawful use.

The rigor and planning and patience and good honor necessary to take the time to attend and pass these courses would improve safe use of guns around the country and also would be a great deterrent, making it harder for criminals to buy weapons.  How many children are injured because stupid adults leave guns loaded in the house, accessible to curious little people? How many people hurt themselves each year because they don't know what they are doing?

I am not a fan of hunting, I can't even kill a spider.  I take them outside.  But I do understand that some people hunt and that we have a constitutional right to own a weapon to help us protect ourselves.  To continue to allow people to buy weapons and ammunition without proof that they have been trained on that weapon is plain irresponsible.

Please share if you support this idea.

We must change the ease of access to guns and background checks are not enough!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Sunday, July 22, 2012

Marsha Rivkin Seattle SummeRun and Walk for Ovarian Cancer by Swedish





Race Details for Swedish SummeRun


The mission of the Marsha Rivkin Center is to save lives and reduce suffering through improved treatment, early detection and prevention of ovarian cancer.Join us in our resolute effort against ovarian cancer. We fund the best scientists, develop the brightest minds, and encourage the strongest research partnerships.


Date: Sunday July 22, 2012
Distance: 5k Run & 5k Walk
Day of Event Timeline:
  • Registration begins at the corner of Marion & Minor 6:30 a.m
  • Aerobics warm up 7:45 a.m.
  • 5k Run/Walk 8:15 a.m.
  • Surviving Ovarian Cancer Tribute/ Awards Ceremony 9:30 a.m.
Location: All running and walking events will start and finish at the corner of Madison and Minor - Download driving directions (pdf) or check your bus options using the Metro Transit Trip Planner.

Registration: $30 per person (through July 18), $35 per person day-of-race. Cash, check, and credit card accepted.
   Register online: Whether your choose to run or walk the 5k, select the appropriate registration option on the SummeRun homepage. On-line registration available until 5pm on Wednesday July 18, 2012.
   Register by mail: Please download the registration form (pdf) and return with payment to: Swedish Medical Center Foundation, Attn: SummeRun, PO Box 3976, Seattle, WA 98124-3976. Mail-in registrations must be received by July 13, 2012.
    In-person registration:  You may register in person from June 20, 2012 until 5 pm on July 17, 2012 at the following locations:  
  • Super Jock 'n Jill (Greenlake) 206.522.7711 
  • Foot Zone (Bellevue) 425.462.7463 
  • Rivkin Center (Swedish Medical Center/First Hill) 206.215.6200

Parking: Free until 1 pm for all participants at the following location: 1101 Madison St. garage (enter on Marion via Boren). Please carpool when possible and allow extra time to enter and exit the parking garage.

Festivities & Awards: After the run/walk, you are invited to stay and enjoy refreshments, live music, an award ceremony for top finishers, and a tribute to ovarian cancer survivors.

Have questions? See our Frequently-Asked-Questionspage!

Tuesday, July 17, 2012

Mom is home

While mom was in the hospital, many days passed by.

What started out to be a weekend of fun, plans to see "Rock of Ages", abruptly turned into two weeks of rounds for our family.  More importantly, two weeks of pure Fight like hell days for mom.

What started out as super high blood sugar (diabetic ketoacidosis) turned into every nightmare you can imagine.  I cannot detail it exactly for her privacy, but it is safe to say that my mom is my true heroin.  She just never quits, never never never.

Our family had to be with her 24 hours a day 7 days a week while in the hospital.  I'm tired and joyous at the same time.  Thank God her sister came out when she did.  She is still here. God Bless her.

As mom rotated from one floor to the next to the next, my sister and I had birthdays.  The nation had a birthday.  Mom was fighting to tell her doctors to help her.  It was so scary to see her experience so many different problems, and not be able to communicate.  But with her will, our will and the prayers of many, she made it, by the grace of God.

She is home now and so so so so beyond thrilled and joyous to see out her living room window.  To walk in the sun.  To have her own food and sleep in her own home.  To watch the people walking by with their doggies and stollers.  To see the neighbors and see the children smile.

Most of all to see her family and feel our love.  She has some determination that comes from no place I know.  I have my cancer to deal with, and had my Lipodox yesterday............but overall it's just not that big of a deal. My mom is everything to me.

I remember one day a few weeks ago, I had knocked on her door.  "Come In" she would say with her boisterous voice, as she knew it was me.  I remember my glancing thought...."I wish I had recorded that".

She made this meal when my Aunt was out here in June, just a great spaghetti with peppers and all the good stuff.  I decided to freeze my portion of the left overs.  I just had to keep it.  My mom actually can't eat that kind of stuff, but my Aunt was returning home and my mom really wanted to cook up something good.  She sure did.

Now she is on a new road.  It will take a few weeks for her to get her strength back from this most recent ordeal.  I just pray that she accepts the help she is given.  Her independence is crucial to her survival.  That's mom.

As I recall the lonely halls at night in the hospital, arriving after work to relieve my sister or my Aunt, I would see other people all alone.  It was heartbreaking.  Especially on the critical care floors.  I'd walk by the same room day after day and see that no visitors were there, no extra voice to speak for them, no watchful eyes.

That is the truly scary part.  Hundreds of thousands of people are alone in the hospital, they live away from family, have no local support network or are from a nursing home and may have few family ties.

I can guarantee you that if we weren't there, my mom would not be faring so well.  We had to stay on top of everything.  Her specialists are so amazing, but it's the in-between people.  The change in shifts, change in floors, a constant new orientation to someone different who did not really understand the complexity of her medical condition.  They have too many people to help, can only take time for what is needed.

I know I was a pain in the butt, but it was necessary.  When someone you love is fighting for their life, you just do what you need to do.  That is all you can do.  I pray.  I want to thank all of those who prayed for mom and sent their warm wishes and positive healing thoughts.

It feels strange to be sitting here being able to take time to even type this out.  The past few weeks have been spent running back and forth to the hospital, coordinating shifts and my work and errands.  My poor kitty cat was so good......I think she knew.  She complained a little, but for the most part, did OK.

Now is time for healing and peace.  I continue to pray that my mom can find some time to do what heals her spirit, her art and just doing some fun things for what remains of our summer.  She loves her grand kids so so so so so so much and her family.  She is so bright and wants to be involved in important things.

She just needs a break to get some time to do these things while she is feeling good.  It's so hard in between doctor appointments etc.  It will happen.

We still need to take our sweet trip to Bainbridge Island, the one we won in KLGandHoda.

She just called to see how I am doing........yay.  I got to hear her voice.  I got to talk with her and my Aunt.  My day is better already

For today I am resting, will work tonight and hopefully visit mom tomorrow.  My sister has just done an incredible job of coordinating and running things.  She is the best sister ever.  My sweet Aunt is here, such a blessing.  A few nurses and nursing assistants really were so so so so so so good to mom, you really were.  Thank you for your tender care....especially Mario and Sean.  Thank you deeply to her specialists who really look out for her, you are wonderful.

I love you mom.  I love you mom.  I love you mom.


Thursday, July 12, 2012

More well wishes and positive thoughts needed

Hi everyone,

This is just a simple note to you to let you know how mom is doing.  She is STILL in hospital.  We are trying so hard to get her stable, she is so complicated.  She had new and severe issues arise after she was admitted and we are dealing with all of that mess.

I can't go into details, just know anything you can do to send a prayer or a cheery thought her way would be welcomed with open arms.

We want our mom back.  I love you mom with all my heart.....................

PS.  I start my new chemotherapy treatments Monday the 16th.  It's breaking my heart because I won't be available to help for a few days.  I have been switched to Lipodox.  Just really need it to NOT knock me down.

Being lifted in spirit.

Love,
Denise

Thursday, July 05, 2012

Mom's work from long ago, prayers needed


When we were young as kids, my sister, brother and I remember mom spending many nights creating beautiful paintings.  This is the only photo we have of her work.  Somehow this horse painting disappeared after the divorce years and years ago.  I never want to see the heart that created this stunning representation of a Spaniard and horse to stop.

I am asking for prayers for mom. She had a heart attack last week and a series of other serious complications are keeping her in hospital, including an infection she acquired from her central line. She is in so much pain and just not herself at all.  She is suffering.  Please keep her in your thoughts and prayers.

I saw my gyn onc yesterday.  Had a follow up CT scan last week.  Well, the carboplatin isn't working as well as my gyn onc would like.  My tumors have grown slightly, one the same size and there's a new tiny one.  They are still all small, but a threat if they keep growing.  I have small amount of fluid around my heart and something strange going on with my lungs.  Atelectasis....where the tiny sacs collapse. I only have small area on both lower lobes, so that is good.  I feel like that partially explains my constant fatigue and decreased activity level.

My last carboplatin treatment caused me to get very short of breath, and sometimes even now I catch myself not breathing very deeply.  So my goal is to start doing deep breathing exercises while I transition to a new medication.  Basically carbo is not giving me enough benefit for all the suffering, and I agree to change out to a new chemo medication.

So I will start a medication similar to Doxil in a few weeks.  The program is 4 treatments, monthly.  My chemo brain has caused me to forget the name of the sister drug, but I think it's called Lipodox.  I honestly can't remember.

Well, it's not the best news, but it's not the worst news either.  The carboplatin did make some difference, and for that I am thankful.  I have been so fatigued and really need to exercise.  I have gained 10 pounds.

The good news is that this new chemo may have more manageable side effects and I won't have to go in hospital to receive treatment.  My gyn onc is so good.  She really wants the time that I am in treatment to be as functional and positive as possible.  I believe she has made a smart recommendation to change at this point in the game.

I need to be there for mom, and work and be as active as possible. We have to get her back on her feet..........

I just wanted to give you an update.  Thank you for your friendship, care and prayers.

Love,
Denise


Monday, June 25, 2012

4th Chemo kicking my behind


My mom with Kate, at the NBC Today Show.  Kate was our producer, so sweet.  My mom still beats down the doors of diabetes every day, and wins!
I painted this little fish when I was on chemo in 2010.  I just love the  blue.


As I sit here drenched because of the side effects I wonder why I don't look like a swimsuit model.  I just can't explain how ridiculously sick I have felt since last Monday.  Actually, yesterday was a good day and this morning I am faring "ok".  

My sister took me home from the hospital last Tuesday after another round of Carboplatin via a desensitization protocol, and I was thinking "I'm good". She bought me a soy vanilla latte ( I know, bad soy bad soy).  I can't remember much after she left, except to say that all week I was very short of breath.

All week I got drenched in sweats and would have bad nausea, be unable to breathe well, and just super tired.  I hardly drank a thing for three days, big NO NO.  I did the best I could. I took my meds like I was supposed to, oh well.  I am on the up side of the recovery now, whew.

Yesterday was the first day I had a cup of coffee.

My mom and aunt were so sweet to come over Thursday night because I couldn't function.  I was crying because I couldn't catch my breath.  It wasn't like I needed 911, it was just a knowingness that my body was having a hard time with the chemo.  Harder than last time.

Today I am so lucky that I feel well enough, I can go with my mom to her rehab and spend some precious time with my aunt.  

I only have two more chemotherapy treatments to go.  Strangely my CA125 marker is slightly rising.  Not sure what it means because my gyn onc stated that the marker is not reliable.  When my recurrence was diagnosed, it was 15.  15 is a dream number, a great number, if you are not in a recurrence.  So for me, 15 is not good.  It was 38 at the end of May.  I try not to obsess about numbers, but hmmmmmmmm.  

So today is a great new day.  I am thinking about some friends, one who's mom and brother are ill.  One who is having her hip replaced and another who will be having brain surgery in a few days.  

We just need to keep looking forward and doing the best we can.  I feel so so so blessed that I get to talk with my family every day, or send a little text, or look at a few photos.  And, I have this sweet little cat named Marilyn, who stays within 5 feet of me all day long.  How bad can this life be?

Love you all.........................