CDC Symptom Diary Card

Wednesday, January 25, 2012

PET Scan to be scheduled


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

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

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

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

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

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

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

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

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

Peace and Love,
Denise

Tuesday, January 24, 2012

CT scan and CA 125 on Tuesday

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

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

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

Monday, January 23, 2012

Left in the dust

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

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

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

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

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

Be Love
Denise

Wednesday, January 18, 2012

"You were never here", she said to me

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

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

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

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

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

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

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

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

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



Sunday, January 15, 2012

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


Mom's purple couch and in the middle is a seed pillow that warms me at night. This was given to me by my beautiful sister.  In the basket is a glimpse of a georgeous card made by my niece.
The coolest area rug, from mom.  Love this, it makes the room.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Denise

Wednesday, January 11, 2012

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

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

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

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

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

Peace,
Denise




Monday, January 09, 2012

Resources for our teal sisters, can you help?

Ovarian Cancer National Alliance


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


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


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


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


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

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

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

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

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

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

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

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

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

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

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

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

http://www.mfocf.com/

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

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

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

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

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

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

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

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

http://www.sharecancersupport.org/

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

http://www.mylifeline.org/

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

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

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

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

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

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

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

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

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

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

http://www.cancerandcareers.org/en

http://www.cancerlifeline.org/

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

http://www.marsharivkin.org/

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

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

http://cancersensibilityfoundation.org/

http://beingcancer.net/

http://www.cancercopayrelief.org/


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

Sunday, January 01, 2012

Happy New Year

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

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

You can survive ovarian cancer.  

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

Never ever ever.

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

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

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

Thank you for your loyalty and care.

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

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

Love, 
Denise