CDC Symptom Diary Card

Sunday, June 26, 2011

My dream



I had a really interesting dream last night.  I dreamed about my amazing surgeon, my amazing gynoc, my family and other people I don't know.  It was a celebration, my party, that I no longer had cancer.  
It was fantastic.

Imagine an old french cottage, but it's the size of a huge warehouse.  The cottage house was nestled up in some mountain range and I was frantically trying to prepare food for my guests.  I knew they were coming over to celebrate my recovery, but I had no food to serve.  This was causing quite a panic.

All I had were partial jars of spaghetti sauce (which I rarely buy) and a fondue pot.  I was so stressed because I had all these people over and nothing to serve. Anyway, the place was crowded, laughter all around, everyone was having fun!  My beautiful sister was entertaining everyone with her artwork and she had even designed a fantastic set design for U2.  She had mocked up a miniature set backdrop and was going to enter it into a contest.  Everyone was proud of her work.

My cousin and loving aunt were with me in the kitchen helping with food, the rest of the family and friends were in the living area.  Suddenly my surgeon came in and gave me a big hug and off in the background my gynoc waved at me and gave me a big smile.

My surgeon was wearing a huge fur coat and looked like he was off to go skiing in the alps, funny.  He looked deep into my eyes and said I was going to be OK.  (I can still feel his hug)  It was a great dream.

I see my gynoc's nurse practitioner tomorrow, for a follow up, get a CA125 and physical exam.  I hope my dream is a reality and that things stay good.  I'll let ya know.  Have a great Sunday.

Peace, love and blessings.  

Friday, June 17, 2011

Thank You Cancer Lifeline




I wanted to take some time to thank Cancer Lifeline today.  I have been graced with their help in several ways, and if you are looking for a serious place to donate money, think of Cancer Lifeline.

For the past several months, I have been able to receive free dental care, and let me tell you, that has been a huge savings for me.  Chemotherapy can do a number on your teeth, and through Cancer Lifeline, amazing dentists and dental assistants volunteer their time to help cancer patients maintain healthy teeth.  At the risk of getting too personal, I was unable to tend to my teeth while on chemo and for a while after chemo.  

Several months ago I was referred to their services by a team member of the Survivor program at the SCCA.  The SCCA takes very good care to help patients with aftercare, and the dental referral was part of that ongoing maintenance.  Wow, I couldn't be happier.

The other blessing offered to me has been a recent series of phone calls from a Cancer Lifeline volunteer.  I have the opportunity to talk about my feelings and figure out healthy ways to resolve emotions related to my cancer.  It has really helped me a lot, especially in the past few weeks.  

Cancer is complicated, everyone has their own view on cancer, it's process and an individual's future.  We all want for nothing but great results to come from surgery and treatments, and hopefully that IS the case.  Getting through the process of diagnosis, treatment and recovery comes with all kinds of issues, good and bad.  Cancer Lifeline offers just that, a lifeline.  Check them out and see for yourself.  Maybe you are a cancer patient in the area or a caregiver in need of a little support.  Peace, Love and Blessings


Tuesday, June 14, 2011

Prescription Drug Program


If you live in Washington, you can get a discount on medications through the Washington Prescription Drug Program. I received this information from helpful people at the Department of Vocational Rehabilitation.

I have not used it yet, but I researched one of my medications and there was a very substantial savings. I spent $131 on a new medication this weekend, ouch! I had to put it on a credit card. I have been stressed out because the monthly cost will be $200, and it's a very important prescription.

 I WAS DEBATING TO DISCONTINUE THE MED......

When I asked DVR for help, they e-mailed me this resource. It's free and worth a look.

I literally do not have the money for my latest med, so this is so helpful. I'm still waiting on a decision from SSDI to get my payments up to what should be allowed, sigh.

I like this because it's a good example of how asking for help can be a good thing.

I don't always ask for help in the right way, or I ask the wrong people, or whatever. Hopefully this will help some of you. If you don't live in Washington, I hope that your state has a similar program.

Peace and Blessings,

Denise

Friday, June 10, 2011

Boot Scootin' along


A sprained ankle!  Welcome to the real world.  I fell off a curb the other night, and this is my reward.  I've never had a sprained ankle in my life, and now I get one....HA.  The curb was only a few inches high, but it was covered with leaves and little branches etc.  I had no clue that a curb even existed until I found myself tumbling to the ground, of course in S-L-O-W motion.  I could walk on it but it hurt.  "J' was walking with me and he was so sweet, he said he wished he'd held onto me.  We had been holding hands, but had let go right before I fell............sigh.

At 3am I found myself crawling across the floor to get some ice because I couldn't walk on my right leg.  The  next morning I was still crawling around because I couldn't put any weight on my foot at all.  My insurance company told me that they preferred I go to my PCP instead of ER.........so mom and I took a cab ride to the PCP.  They did Xray and found no fractures, thank God.

The thing is that it was great to have mom there with me, I really needed help.  AND it was sort of a refreshing change of pace to see a doctor for something normal.  No major episodes of anything tragic or cancer related, just a sprained ankle. Not that I'm happy to have a sprained ankle, but it was just nice to have something simple for a change.  

The doctor, the nurses, the techs were all so so nice.  Wow, that was great!!!!

Plus, we are changing my antidepressant now....yay.  Going to ween off of Paxil and start Effexor.  Hoping that this change will decrease my drowsiness and help me to get up earlier in the day.  Really need to be able to function on 8 hours of sleep versus 12.  Getting back into a normal life will demand that.

Thank you to my friends and previous co-workers who have given me permission to have future employers contact them for references!!!!  Really need THAT.

Please follow my sister on her Weathered Silo Blog, just to the left here of my blog.  http://www.weatheredsilo.blogspot.com/

I have seen her beautiful paintings and they took my breath away.  She really is talented.  I can't wait for her to start selling her work.  

My brother was chosen to coach a hockey team and they will be travelling out of state to compete in some championship competitions.  Yay for him.

My cousin Tammy is having her baby shower this weekend...yay.  My aunt and uncle are so excited!!!!

And my mom is having a good day today....yay.

Love you all!!!!!!!!!!!!

Monday, June 06, 2011

Nightmares and job hunting

My mood is edgy, angry a bit, overwhelmed and begging for an answer to my "why".  I met with my vocational developer today to start the process of actually applying for new jobs.  It was as if nothing I'd said before about my needs, wishes, accommodations and preferences was heard.  I know it was, it's just that the reality of job hunting is not soaking in like a smooth bubbly bath, more like a how a hard wave of water slaps you in the face, ouch.

Speaking of water, before I get into the hurdles for today, I have to tell you about ongoing dreams that I've been having lately.  For the past few nights I have been dreaming that I am staying at this luxury hotel, sounds great right, except that everything that happens is weird and spooky.

Last night I jumped into the deep end of the spa pool feet first, and never touched bottom.  I remember feeling the rush of water sweeping upward along my body, desperately searching for the edge, to stop or spring up.  I can't remember how I surfaced, but I eventually did.  I thought I was going to drown. Then I was in a getaway car and one of my little nieces was in the driver seat.  She was laughing and having a ball driving this huge car, and I was hiding from an ex-boyfriend.  Then suddenly my sister and her husband lived in the luxurious hotel, and I was shown into the massive kitchen.  

The kitchen was made of all 1" square old fashioned blue tiles, everything was the same color, including the food and sink.  Then her husband offered me some licorice covered with frosting. My sister welcomed me for a tour, but I woke up before it started.

I have no clue what any of this means.

Some of you may know that I am one of many women who were misdiagnosed and because of stupid doctors in California, I was diagnosed with an advanced stage of ovarian cancer.  Being forever grateful to God for my excellent surgery and chemo, I am lucky to be alive.  

To get to the point of today, I'm lucky to be alive, but feel like I have no control over what is left of my future.  I am doing OK with cancer so far, NED.  

If I want to be able to live independently, I'll need more income.  If I want to enjoy life and take a trip, I'll need more money.  If I want to give at Christmas, I'll need more money.  You see where I'm going here.

Today, my job developer pulled several possible job opportunities that she thought would suit me.  All of them are too far away, some only paid $10, most have expectations I cannot do or require skills I don't have.  Her approach is more like tossing a bunch of spaghetti on the wall and seeing what sticks.  My approach is to be laser focused so I'm not running around with my head cut off.

She is right, I just need to get out there and apply.  She guaranteed me that she will be my advocate and help me with accommodation requests etc, AND she can help communicate with the human resources department once I've submitted an application to help move the process along.

I am very lucky to have this kind of support,  I have fought very very hard to receive it.

My question is this:  Why is someone who has a high risk of recurrence being forced to go back to work?  Why can't I just ask the lousy gynecologist who ignored my symptoms, and didn't do a bi-manual pelvic exam, to give me money to live on so I can be happy?  Oh I forgot, he isn't held accountable for ruining my life.  (At least that's how I feel at this second........)

How do cancer survivors travel the world?  I'll never see that day.

My job developer is trying to understand, she knows I just want a job where I come home and feel good about what I did at the end of the day.  I don't want it to be more than 15 minute commute, because it's only part time.  I get tired, I get exhausted.  I don't want a long commute for a part time job, unless it pays really really well.  I'd love to work for an organization that helps people with cancer.

Hence, why am I being treated like I'm asking for the world when I say I want to to work from home, no sales.  Is that too much to ask?  PLUS, a job working from home allows me to work while on treatment if I have a recurrence, so that I can keep money coming in.  Geeze.

I hate this, competing with able bodied people who can burn the midnight oil.  I can't.......never could.

I don't deserve this ongoing heartache. I'm physically and emotionally spent when it comes to jobs and job hunting.  I don't want to play games, I just want to do worthwhile work and in the process of doing so, do that work in such a way that it doesn't kill me by stressing me out or exhausting the heck out of me.  Again, I ask too much.

Ever since I lost my career in the mid 1990's I have been struggling so badly and when I got cancer I had a good job with benefits, and had to move to Seattle.  I had no choices here.  For most of those other years I rented rooms in people's homes because I couldn't afford my own apartment, California is expensive.  I lived like a gypsy.  I don't want to be a gypsy any more.  

I am starting over again and hating it.  But I will pull through somehow, with the Grace of God.  Life could be worse, so I know I'm much better off than a lot of other people.  I do know that.....I just want a break.

Peace

Saturday, June 04, 2011

The FUTURE OF SURVEILLANCE?

Medical News: Group Issues Gyn Cancer Follow-Up Guidance - in OB/Gyn, General OB/GYN from MedPage Today

I pray that women with gynecological cancers will be able to continue to receive their cancer surveillance services from gynecological oncologists. If the information in the article comes to fruition, your primary care doctor, the one who missed your cancer in the first place, will be responsible for monitoring for possible recurrence in the future.

What What What What What

How tragic ......

I don't know how to stop this ball from rolling but we all must pay attention to this possible trend.