CDC Symptom Diary Card

Thursday, March 17, 2011

What matters



Mom had her surgery on Monday and is doing well.  She is preparing for dialysis and the vascular surgeon needed to create a few access ports in her body, one vascular, one peritoneal.  In the midst of her personal challenges I have been glued to the TV, like many, shocked by the Japanese tragedy unfolding before us.

Libya also now has a "no fly zone" and yet people are tweeting about St. Patrick's donut designs.

I get really confused with all this chaos and inconsistency.

On one hand we need to do all we can to be personally responsible for self maintenance and happiness, seeking whatever solace we can find in God, nature, family, work, etc.  Yet, collectively it does not matter, when you see an entire town vanish before your eyes with a fierce wall of water and debris.  When you see on TV a huge ship next to a wrecked home, and debris everywhere, you can't think.  You're stuck because you really can't do anything other than Pray and give money.

But here in my home, we still need to eat, take meds, go to doctors, watch TV, talk to family, plan for something fun to do when mom heals from surgery, etc etc etc.

I still battle my daily nausea and still can't wear jeans because I literally cannot tolerate pressure on my abdomen.  Wow, do I need a fashion make-over or what?

I see voc rehab at the end of the month.  Does it matter in the big pictuer?  It does, because I need to still take care of myself and those around me. 

We all need to follow the Japanese when it comes to community.  America is so "independent" that sometimes we hurt ourselves.  We frown on elderly and disabled living with family, as it it's some kind of crime.  In Asian culture, they take care of their parents, with pride.

I love helping my mom and pray she will continue to "let" me help her as much as possible.  She is so so so inependent, and in a way that independent nature is what literally feeds her life force.  But it is OK to ask for help.

Today I pray that people learn from Japan's tragedy and take care of their family and neighbors, love one another more and more.  We never know what will strike us down.  My faith in God keeps me going and is really the only thing that can calm and center me.  And when I say that, I see God in everyone around me.  So say when my sister comforts  me or mom, she is like a beam of light shining from above.  Or when my aunt comes to town, and brings much needed cheer to my mom, it's like one of Gods's angels said to tell her God loves her.

Love one another, especially today.

Peace

Friday, March 11, 2011

Missing Jayne from Shoppingkarma

I wasn't ready to read about Jayne's passing, not at all.  I'm not ready to say goodbye to a wonderful OC sister who helped me to live more.  Jayne has the blog "shoppingkarma" off to the left.  I feel sickened, literally.  She had so much joy and love to give, and give she did, freely.

I had been out of touch most of this week, and tonight I was going to post a message to the people of Japan.  I always check on my friends before posting, just in case something closer to my heart arises.

My heart aches deeply for the people in Japan.  My heart aches and I can't breath for the loss of Jayne.  May God Bless her husband Jimmy and may God carry Jayne in his tender arms and take make to vanish all of her pain.  I'm so so so sorry that Jayne has passed.

I miss you Jayne, and will send you my love in my prayers.

God Bless,
Denise

Saturday, February 26, 2011

The past......is it still me?

Did I ever really talk about the vocational testing?  It was tough to do the psychological interview.  She asked me a bunch of questions about my personal history, relationships etc.  It was good and bad to revisit the past.

I am trying to figure out why such detailed questions were necessary, especially now.  I don't know about you, but having experienced this whole "cancer thing" has altered my perspective on so many levels.  I just don't feel the same as I did before cancer.  I AM A DIFFERENT PERSON.

I love everyone in my family MORE than ever and cherish my friends like never before.   The hard part is that I can't seem to express it well.

Maybe the chemo has also exacerbated problem areas which is creating a situation where I feel stuck.  I am a turtle, I move slow, and to much the dismay of those around me, I wil likely not be able to move any faster. Each day my physical priority is to get my gut in order, then the rest of the day is fine.  (TMI I know)

In my past, I have been one who had a few close friends, but otherwise, was very shy.   In my late twenties and early thirties, I had a bunch of friends for a short time.  When I filed bankruptcy, I retreated and eventually lost contact with them.  I had such a great group of friends.  Now I have reconnected with a few on Facebook, and I am so thankful to God for that gift.

Now, I am in a new area, and my friends are my family and a few people in California.  I feel really isolated.

I wonder if my family thinks I am too dependent on them now, and too needy?  I don't mean to be. 

I am going through what some would call REGRETS right now.  This is probably a normal experience when you have really faced the possibility of death.

I regret not spending more time with my little sister and brother.  That is probably the biggest regret I have.  I am 4 and 5 years older than they are, and I always saw them as a team, and now I want in.  I love them very very very much. 

Everything is moving too fast around me right now and I wonder how I will keep up.  See, since 1996, I have always had to live with someone else because I just couldn't afford the cost of an apartment on my own.  I am part of the "working disabled" community, the working poor.  And I had a lot of medical expenses because of my rheumatoid arthritis, and most of those bills went on credit cards.  So you can imagine. The only way I could live was to rent a room, and I went from house to house, like a gypsy, just getting by.  But I was as independent as I could be.

I am not sure if I will be able to exceed that level of living. 

Emotionally, I was already depressed from my RA.  The oc made it worse, and better.  I know that sounds weird, but it's true.

Now I see what is important, and have so much more love in my heart.  But I lack resources, not motivation.  My stuck feeling comes from not being able to take care of my needs in the right order and with the resources to do it.  I need a mastectomy, and if I get a job, when will they let me off work to heal?

So now I'm thinking to just do it now so that I can be healed before I get a job.

And then I think, well, forget the BRCA issue and forget the mastectomy.  Deal with that issue when you get breast cancer.

Another regret I have is the multiple attempts I made to start my own business or operate a home based business.  I can tell you that nobody wanted me to do that, but at the time, that was the only way I could bring in money.  I really had hard times finding jobs I could keep because my RA would get in the way eventually.  I wish people believed me there.

So because of THAT, my work history is just scattered, my resume sucks.  It is what it is.  This is the first time in my life that I have received any help from the government, and I've earned it.

But I feel guilty too, like a slug, like a loser sometimes.  People ask me why I don't have a job, where do I live, gee don't you want to live on your own???????????????????????????????????/

Of course I do!!!!!!!!!!!!!  I haven't had my own place since 1996, of course I would relish in THAT.  I would have an open wooden floor and dance my little dance all darn day.  But I am with mom right now, and you know what, I LOVE it.

I get the total godly joy of seeing my precious mom every day, good day or bad day. I get to relish in her stories and her smile, and I get the joy of doing what she asks me to do, if she needs it.  I'm not ashamed, I love it.  I love my mom.  I don't feel alone when I am here.

I feel protected.  AND, I want to support my mom too.  (she has her own challenges)

But I can't move out yet, but the plans are in motion.  I sent out another resume on Friday.  I meet with Voc Rehab next week to go over benefits and will meet my counselor again real soon to go over test results.

I do need more financial help soon, though and am worried but I know it'll be alright.  I'm not sitting idle awaiting a rescue, I just need a little more time. 

So to those of you who wonder what I'm doing, I'm applying for some jobs, not many, because only a few of them fit my physical needs.  But I look every day.

AND I am continually rebuilding my health as best I can.  I also applied to be a volunteer at a local cancer center.  I sent off the paperwork for a background check a few days ago.  I hope they accept me.

I participate in an online support group for ovarian cancer patients and caregivers.  That really helps me out.  I have connected online with one woman who lives in the area and she is organizing a get together for the local Seattle gals, for the springtime.  Yay.

And the best thing is that I get to spend time with my family.  Mom, sister, brother-in-law, nieces.  My aunt is coming out here in a few weeks.  Yay.

And I post on facebook every now and then.

When I go to Church, I feel at home.  I feel safe.  I feel pure love.  I pray every night before bed, and exercise almost every day. 

That's my life.  All I need is a boyfriend and a puppy, and I'm good to go.

I've rambled on and on.

Peace and love.

Wednesday, February 23, 2011

Ha Ha Ha Ha Ha Ha Ha Ha Ha

For a BELLY laugh.  My inspire friends guided me to laugh today.  Hope you laugh too!


I love flip flop guy!

Peace, Denise

Sydney Opera House went Teal

Thank you Jenny for helping us to see this on inspire. 

http://www.newsreflux.com/2011/02/22/opera-house-sails-illuminate-teal-for-ovarian-cancer/

Next step, the Obama house needs a little Teal, don't ya think?

Peace and Love,

Denise