CDC Symptom Diary Card

Saturday, February 04, 2012

PET Scan Feb 14th.....sigh

Paul

A few days ago I was out with my mom, up in the Queen Anne neighborhood of Seattle.  She was in an appointment and I was doing my WALC, for my walking study, and passed by a pet store. I turned around because I felt like I needed to go inside, just had a gut feeling.  I entered the little shop, and was delighted with the homey feel, the wooden floors, organic foods and friendly employees.

In the front corner of the shop stood a crowd of people and I could tell they were looking at a little cutie that needed adopting.  I walked around for a bit waiting for them to leave.  When they left, I went over and found a cute little itty bitty black kitty.  It was soooooooooooooooooo cute.  Her sister was adopted earlier in the week, I was told, and there she was, all alone.

I reached in to touch the kitty's little nose and when her nose touched my fingertip, I felt a rush of energy.  It was amazing.  It was as if life was infused into my body for just a moment.  I have been thinking about adopting a cat from a shelter......oh boy oh boy oh boy.  This experience tells me so many things.........

Paul, the cat in the photo, is raised by my lovely nieces, sister and her husband.  I love Paul.  He gives me so much joy when I see him.  When I was living with mom, I so enjoyed the parade of dogs and their owners, and the kitty cats that roamed the area.  Each house around hers has a pet, and almost all have a cat, and two have dogs.  One of the cats always came over to say hello to me when I was outside.  I miss him too.  I really do.

So my PET scan is set for Feb 14th, Happy Valentine Day....oh well.  I am really staying positive.  Our eyes are in the front of our heads for a reason.  Each breath is a new breath.

On Monday I am going through something called leukapheresis to donate white blood cells for a study.  The group is called http://depts.washington.edu/tumorvac/.

Anything I can do to fight ovarian cancer, I will do.

On Wednesday I will also have an opportunity to participate in a presentation to gynecology students that teaches them about ovarian cancer.  I hope to be sharing my story so that they are more aware of how subtle the signs are and that  really the signs are still not fully known.  It's called Survivors Teaching Students.  It will be my first time, so I'm not sure how much I get to share.  I hope to send an update on that too.

The other thing going on is that it's time to re-invigorate the cause I started last year, turning Facebook Teal in September!  I know this may not necessarily be unique, in that everyone seems to have a cause these days. Every color in the rainbow is now linked to something, but ovarian cancer needs more awareness.

I created a "Cause" page that is a little more user friendly to promote this cause.  We'll probably need a million supporters to do this. http://www.causes.com/causes/651059-teal-to-heal-turn-facebook-teal-in-september/actions?recruiter_id=123458534

Everyone knows pink stands for breast cancer.....and for raising money and for raising awareness, that is a great thing.

Those of us effected by ovarian cancer can achieve the same results.  If it were up to me, all cancers would fall into the same color, and all cancers would get equal funding, equal research and equal support.  THAT is a topic for another day.  I'll never forget the call I had with the American Cancer Society and I was told I had the wrong cancer to get the resources I needed.  Just awful.

Anyway, all my best, peace and love!

Denise








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.