Cancer Lifeline needs volunteers on May 18th

CANCER LIFELINE SEEKING A FEW VOLUNTEERS ON MAY 18TH

Cancer Lifeline’s mission is to optimize the quality of life for all people living with cancer

Volunteer at Cancer Lifeline

Date: Friday, May 18 2012

Time: 10am-4pm

Number of volunteers needed: 4-10

Contact: Amanda Boyle, Development Manager at Cancer Lifeline

            206-832-1273 or aboyle@cancerlifeline.org

Description of what we will be doing:

Help to beautify the healing gardens at Cancer Lifeline. We have three gardens on the upper floor that need renovation and care. We have one additional garden on the lower level which also needs attention.

 Here are a few tasks that need to be done for the facility:

• Weed and tidy garden beds
• Pressure wash decking and chairs on all decks
• Sweep decks
• Paint awning/pergola a new color, scrape any excess paint.
• In downstairs garden, sand and treat the wooden pergola. Remove current vines.
• Clean candle lamps in meditation garden
• Refinish and sand benches
• Plant new items for summer
• Replace soil
• Clean fountains
• Trim back leaves, branches, and climbing vines as necessary

How it benefits the community and Cancer Lifeline:

Our healing gardens are an important aspect of Cancer Lifeline because it provides participants and building visitors with a lovely outdoor space to call their own. After dealing with heavy thoughts and burdens about a cancer diagnosis, these gardens can provide a new kind of reflection through calming fountains, sunshine and conversation in the outdoors. Cancer Lifeline is a special place of sanctuary and healing; we’d like to preserve its special quality for years to come with garden beautification efforts.   

The gardens were designed and installed by the U of W’s Landscape Architecture students. Planning the Healing Gardens was an amazing experience for students, clients and staff.

The Celebration Garden (first garden – west-at top of back staircase)

Theme: there are often many things—small and big that can be celebrated in the process of healing. This is our “clients’ garden.”

A horticultural therapist planted different herbs as the basis for client and staff involvement in this garden. 

The Reflection Garden (second garden-west)

Theme: Healing can take place through reflection and meditation

The fountain – a wonderful cascade of soothing sound – was built in honor of our Executive Director Emeritus’ husband.  There is a feeling of tranquility with the soft murmur of the bamboo plants, a wonderful quiet space.

 The Earth and Sky Garden  (largest garden-east)

Theme: the connection between healing, and the earth and sky

Our largest garden, fitting for classes outdoors or for a lunchtime meet-up for clients.

 Lower Level Garden  (smallest garden, south side of building lower level)

    A bench and a wooden pergola provide a nice sanctuary to the building.

http://www.cancerlifeline.org/

Cancer Lifeline is very dear to my heart.  

If you are in the Seattle area and have some time to help, please join us! 

Peace to you.

New OC NON-Screening Guidelines abandon women

http://www.cnn.com/2012/04/13/health/ovarian-cancer-test-brawley/index.html

I have been thinking about the results of the Ovarian Cancer Screening guidelines for several days.  Today I am finally going to share my gut feelings about this.  Although I respect the medical community and their research, I believe that at the end of the day, this is a total abandonment of women and will kill many.

The truth is that the only reliable way to detect the early stages of ovarian cancer is via an expensive PET scan or other equally complex scanning.  A CT scan is not reliable.  A blood test is not reliable. A transvaginal ultrasound is not reliable.  A bi-manual pelvic exam is not reliable.  BUT...any screening is better than no screening!

How do I know that PET scan is reliable?  My brilliant amazing gyn-oncologist spotted a suspicious situation with a tumor on my liver via a CT scan and ordered a PET scan.  The PET scan ironically revealed that the liver tumor was not active, but there were THREE other active tumors, breathing, living, ready to mature into larger tumors at some point in the future.  It is a miracle that my recurrence was caught in the early stages.

My CA125 was only 15.  I had no unusual symptoms other than increased fatigue.  My constant abdominal pain is not anymore a symptom because it is constant.

My stand is this:  Either we allow all women, and I mean ALL women, the opportunity to receive a PET scan if there are any subtle signs of ovarian cancer, (not just the big 4, but weird abdominal pain, low back pain, unusual bleeding, increased fatigue)  and make it affordable............

OR

We declare that all ovarian cancer is a chronic condition so that we can apply for benefits to live what is left of our lives in dignity.

We can only apply for a limited number of benefits while in active treatment (corrected comment).  When we are declared NED, we cannot apply for new benefits, but we can keep benefits we have.  The problem is that this disease does make us less able to work full time and the medical expenses are ridiculous.

I am so grateful to have this time now, even in a recurrence and being on chemo.  BUT, I am not really living the life that I'd like.  I also want to add that I am not saying that I have no control over my future or anything like that, but it is very difficult to be a cancer patient, find work and keep it.  So, yes we do need to reach inside and find our entrepreneurial spirit.........and I am on a mission of raising awareness.  But if this is really true, that the recommendation is that there be no real active screening, than it is almost a certainty that all ovarian cancer diagnosis will be advanced.

There is this false belief that people with cancer somehow find a way to live their last years checking off the items on their bucket list.  Well that is great, but it takes money.

I had to go back to work before I could do some of the travelling that I wanted to do.  Now all I can do is just do all I can to keep my little part time job so that I can keep my apartment and car and do little things.  I am not starving, and am getting by, thank God!  But, really?  Is this it?  The rest of my life is going to be spent paying bills to get chemo to live to pay bills to get chemo to live to pay bills.

The extra money (like thousands of dollars and free time) to travel, just be next to a dolphin once, take a month and travel, see a broadway show, take my mom on a short cruise, yada yada yada.....well I'll pry have to write my novel and make the money to do that because what I'm doing now won't cut it.

My point is that if the CA125 had been given to me at the time the oncologist in California denied it, I could have been detected at an earlier stage.  Thusly I would have not had as complicated of a surgery and maybe not needed chemo.  That would in turn have created a body that would be better able to work a higher paying job that could have created a better lifestyle with more flexibility.  I didn't even get a CT scan of my pelvis when I had glaring symptoms!

At the end of the day, the new guidelines say not to screen for ovarian cancer. The result is that insurance companies can now deny payment for legitimate screening tests and women will only be diagnosed with advanced ovarian cancer.

I am not being negative, I am saying we need to fight for what we know works!  It will be decades before a blood test is proven reliable.

A PET scan does work and we need them to be readily available and affordable.  That's it, that's the only solution we have that will work until scientists come up with a blood test or something less complex.

PET scans do have some risks, but really it's minor compared to death.

That's where I stand.

Crying all day

Today has been horrible.  It hit me like a brick that being compromised, not able to do all that a person wants to do in life, when it comes to being with the people you love, is just devastating.  I had been crying and crying and crying and praying for God to give my mom just a few days of freedom from her trials and angst.

It all started with the image of my mom being able to drive her grand kids to a vacation park, play in the sand or have a picnic in the mountains.  For some reason this image caused an emotional break today.  A total collapse.

A miracle happened.  She called to say that her kidneys are doing better.  There is a possibility that she may be able to take a break from dialysis.  WOW  Now this needs to be tested and be verified, but even a little break would improve everything.  She is so much healthier since her heart surgery.  I have desperately wanted for her to have some normalcy.  I have been praying and who knows exactly why but this is such great news.  She is still in shock.  This is her above, isn't she so beautiful!!!!!!

When we go out together, and people learn she is my mom, the look at me like I'm lying.  Really?  Really?  They say to her how wonderful she looks!  They always think I'm her sister.

I have been really emotional all day.  AND I have this weird numbness on my face.  I left a message for the gynonc, and I'm sure they will address it.  My right upper gum, part of the right side of my nose has been numb.  This has been since chemo, but it wasn't too noticeable or I thought it would get better.  Not sure.  Maybe it's just a dental issue (I lost a front tooth to chemo about 6 months ago and wear a prosthetic).  Maybe my prosthetic needs to be replaced.  I'm certain that is it............but it's just weird.

I'm feeling trapped and stuck.  I want to fly.  I want to run away.  This news about mom is just so precious and uplifting.

I created a little bluegrass station on Pandora, and I love it.  It's so fun to listen to bluegrass.  It's like so awesome.  It gives me little happies.

I am so so so so so so so so so so so so hugely happy for mom, thank you God!!!!!!!!!!!!!!!!!!