Roll Call

November 27, 2012

Lets get everyone to do a roll call….  Holiday check in!

I’m good.  Healthy.

My mom is dying…  lung cancer/emphysema.

I’m missing my MWC friends…  particularly Susan.  Her passing took all the air from my sails.

Anyone else?


Shirley Temple child star mother with cancer diplomat : 1st Celebrity to admit mastectomy

October 24, 2012

Shirley Temple Black child star mother with cancer ::

1st Celebrity to announce she had a mastectomy ::

“the surgery is no longer regarded as shameful and secret”

i found this book in the palo alto children’s library today.

i’m so grateful to shirley 

mod*mom

(click images to read Shirley’s story please)


One Door Closes: Another Opens by Mary Beth

September 21, 2012
This post has nothing to do with cancer… but I think that this site can use an uplifting story…
I am so happy to be writing this story. My daughter was adopted at 2 days old. Her Birth Mother selected us from a resume that we compiled. We never met her. She was given two of the hospital birth photos.
 
We knew quite a few details about her family and medical history but no identifying information as the adoption was private. She was born in Pennsylvania, but the adoption took place in New York State. We were told that when my daughter was 18, she would be able to sign the adoption registry and if her birth mother also signed, the records would be opened.
Nina knew that she was adopted and we shared all of the information that we knew. All except one piece of information. When I received the paperwork I had noticed that the attorneys had forgotten to black out her Birth Mother’s last name on one of the bills. That is how I knew that part of Nina’s heritage was Irish. My feeling was that I would honor our agreement that we would not look for her and she would not look for us… until Nina was 18.  Nina always talked about wanting to meet her Birth Mother. Two questions that she always wanted answered were: Who do I look like? and Does she think about me?  Society is so accustomed to biology, people just naturally try to figure out where the resemblance is: do you look like your Mom or your Dad? Even in school, usually at the beginning of the year the kids always have to talk or write about their heritage.
Adopt means… to take as one’s own. They did take our heritage, but it does not mean that she did not wonder whose biology she was made of and what was her biological heritage.
Last year when Nina turned 18 she had wanted to fill out the paperwork and start the process. The year was quite traumatic for all because of our divorce. I told her when she was ready I would help her. My biggest concern as a Mother was to protect her. I was worried that if her Birth Mother did not want to be found it would be another source of abandonment and disappointment. Nina had decided she was prepared for that event, but that she had to try to find her. I decided I would let Nina go through the legal procedure and if for some reason the records could not be opened then I would hire a private detective to find her and make sure that she wanted to be found. I had even done a few internet searches but nothing concrete had come up.
The weekend of September 7th was a very difficult weekend for Nina and her paternal adoptive family. She was very upset and crying most of the weekend. Mean things had been said by both sides. As a Mother, you want to make it all better, but I just did not know what else to do, except pray. I said a few extra rosaries. Sunday after mass I always light a candle at the Statue of Our Blessed Mother and ask her to watch over our family. This Sunday I asked for extra help for Nina, to relieve her pain.
When Nina came home from work, she sat down on the couch and was so exhausted from the emotions of the weekend. She was so sad. Dante was playing his video games. For some reason, I decided to pick up my phone and put her Birth Mother’s last name into my phone and the word ‘adoption’. An “adoption connect” site popped up and the 7thentry down read:
25-Mar-2009
I am searching for my daughter who was born June 7, 1994. She was born in St. Mary’s, PA but the adoption took place in Buffalo, NY. I am her birth mother and want to find her. She has a birth mark on her forehead. I was too young to care for a child, but have never forgotten her and hope she was given the life I could not give her.
 
 
I could not believe my eyes. The only incorrect piece of information was the year. I put my phone down. I told her that we had to believe and trust that God was watching out for us. I could not tell her why I felt this way, at this moment but I would tell her when I could. I started to cry and both kids looked at me strangely. Nina asked if it was a good thing and I said “yes”. I was waiting for Dante to go to bed, so I could have some private time with Nina to share this news. She was so exhausted that she went to bed before him.
When the house was quiet, I went in to wake her up and I asked her to bear with me as I told her the whole story. I explained how I knew that she was Irish and why I did not tell her her biological last name. Then I read the post to her. She started to cry. When I first read the post my biggest concern was alleviated, “does her Birth Mother want to be found”. When Nina heard the post, one of Nina’s questions was answered, “does she think about me?”
Nina hopped out of bed and turned on her computer. She registered on the site and pressed the correspond with this person button. She wrote:
If your name is Melanie, and your Mom’s name is MaryAnn and you gave me the name Leila at birth and your birthday is October 28. I am your daughter. I have a birthmark on my right temple.
 
This message was sent at 10:30pm on a Sunday night. One guess as to who did not sleep much that night? The next day at about 11:00am, I got a call at work: “Mom… Melanie responded” that started a whirlwind trail of emails and information and 19 years of questions answered on both sides. Melanie sent a photo of herself. The biggest question of all. “Who do I look like” was answered. Nina looks just like her birth Mother with the exception of her nose.
Wednesday was going to be the first phone conversation. As I was driving home that night I thought … how do I ever thank Melanie for the gift she gave me? I started to cry, which is not the smartest idea while traveling on the freeway. When I got home, they were talking and Nina let me speak with Melanie. I told her that I do not know how to thank her and she said the same to me. We talked for quite a while and when we were done I told her that I loved her. I don’t even know her, yet I love her. It was so nice to hear the two of them talk and laugh, to hear pure pleasure in my daughter and tears of joy.
In the same day, one door shut and another opened on a whole new family. She has a Birth Mother, a Birth Father, a Step Father, a full biological Brother, 1/2 biological Brother and Sister that are twins, a birth Grandmother and a birth Great-Grandmother an Aunt and an Uncle and two Cousins. She is emailing, texting and talking with them every day. We are planning a trip to meet all of them.
Melanie said when she read the email, she was speechless. She sat stunned. Her husband came downstairs and asked her what the matter was? She said that she could not speak, she just turned the laptop towards him and let him read it for himself. She had written the post to find Nina 3 ½ years ago! Both Nina and Melanie agree that this week has been surreal and amazing at the same time. Two of the best things that I could hear Nina say were “Thank you Mom” and “They love me and they don’t even know me.”
So many prayers were answered that day…
cross-posted at marybethvolpini.com

Are YOU Dense?

September 12, 2012

i went to a talk by Senator Joe Simitian.

He needs more signatures to get California Governor Jerry
to sign a law that adds a sentence to Mammogram results,
that inform a woman whether she has dense breast tissue.

this is already a law in 4 states.

“Dense Breasts” make detecting cancer via Mammogram unlikely,
because cancer and dense breast tissue both show as white.

BI-RADSThese  mammograms are of the 4  grades of breast tissue density. (left to right) least dense to extremely dense.

Over the past decade, peer reviewed scientific studies have demonstrated that mammography misses breast cancer at least 40% of the time in women with dense breasts

Additionally, the research has shown that by utilizing adjuvant breast screening tools, detection of early stage breast cancer can increase up to 100% for women with dense breast tissue. By failing to enact life saving screening protocols for women with dense breast tissue, cancers are detected at a later stage than necessary when least treatable and survivable. The impact on the health care system is also significant as a later stage diagnosis is 13 times more costly to treat than an early stage diagnosis.

Breast density is one of the strongest risk factors associated with breast cancer

According to the National Institute of Health and 18 other studies spanning 8 countries, breast density is recognized as one of, if not the strongest risk factor associated with development of breast cancer. Breast density represents a stronger risk factor than age or having a first degree (mom/sister) relative with the disease. Studies have found breast density increases the likelihood of developing breast cancer between 3.6 and 18 fold.

There is currently no protocol mandating physician disclosure of breast density to patient

Public safety mandates that the government enact a policy that will require health care providers to start telling women the truth about the effectiveness of their mammograms.

The medical community has failed to enact a standard that simply requires doctors to tell women that mammography can miss more cancer than it detects in women who have dense breasts. As a result, women with dense breast tissue are being denied access to an Early Breast Cancer Diagnosis. A policy change by the government is necessary to ensure that patient safety becomes a high priority and that the communication of Breast Density to Women is standardized across the country.

When kept in the dark about this critical piece of their own health risk, women are denied the opportunity to partner in their breast cancer surveillance

Are You Dense Advocacy is advocating for equal access to early cancer detection for the 40% of American women with breast density. An amendment to the Mammography Quality Standards Act’s existing “lay letter” reporting requirement, to include information about a patient’s individual breast density, will give women critical health information about themselves. Without this information, women – kept in the dark about their own physiology and risk factors – can hardly be considered informed participants in their health surveillance.

This map shows 4 pink states passed the law, 12 red states endorsed a bill, 6 blue states working on a bill , 32 states have no action: interactive map of  Breast Density law progress

Cancer Patient care providers profit from late stage detection of cancer: Oncologists, Surgeons, Radiation technology…
We need laws to protect us from useless diagnostic radiation + those who stand to profit from late stage cancer. This law is a step in advocating for better early detection methods for all cancers.
Notification + further testing could have detected my cancer while breastfeeding + saved me from late cancer diagnosis, so i personally know it will save lives.
I almost died, because I was “dense” + believed in Mammograms + 2D ultrasound, to detect cancer in my 3D breasts of dense tissue!
-3D ultrasound  should be standard
-MRI’s + fine needle biopsies should be used for high surveillance
We need earlier detection now + all it takes is sending an email now…
Please send an email urging your State Representative to pass a Breast Density notification law using the form on  AreYouDense.org

mod*mom via AreYouDense.org


a flower hat

August 4, 2012

a flower hat :: by Matte Stephens

reminds me of all the mothers bald from chemo right now,

hopeful for spectacularly positive outcomes like mine :)

i’m so grateful for the healing energy of art + blog pals…

i was always in search of a great hat when i was bald :)

flowers around the head is a beautiful alternative to a hat or scarf!

will you share your bald head covering  + decorating ideas + experiences in the comments of this post,

for mothers with cancer looking for ideas now?

 

 

mod*mom


finding hope beyond the pink ribbons (by Laurie)

July 20, 2012

My friend Sean Moore, Orit’s husband, posted the following note on FB. I reprint it here with his permission:

An enormous number of people have asked about donations in Orit’s name over the past 2 weeks. As many of you know, Orit was very academically minded and spent considerable time reading the medical literature and evaluating charities. We found that most cancer research charities had very high administration fees and poor impact factors. We came across some specific research, which has very good promise in helping find a cure. The Ottawa Hospital Foundation has set up a fund, which will be used 100% to go directly to this work. The discovery is very novel and was published in the world’s most prestigious scientific journal in June of this year. I will include a link to their latest publication and an easy to understand explanation:

http://www.fbmc.fcen.uba.ar/materias/qbiia/seminarios-2012/seminario-6-28-y-30-de-mayo.-hipoxia-y-autofagia/A-Nature%2012%20AOP%20may6.pdf

Here is a link to an easy to understand summary of the research:

http://www.ottawacitizen.com/health/discovery+offers+hope+cancer+heart+disease+miracle+drugs+with+video/6574966/story.html

Donations in Orit’s name can be made online by using the following link:

https://secure.e2rm.com/registrant/donate.aspx?TributeType=Memoriam&EventID=1819&LangPref=en-CA&Referrer=http%3A%2F%2Fohfoundation.ca%2F

The first page will capture the information regarding the person making the donation. Under “Donation Information”, please choose “Other” in the drop down menu and specify “As requested by family” in the space provided. Once the donation portion is completed, you’ll be directed to a page to indicate that the donation is being made in memory of Orit and to indicate if an acknowledgement should be sent. Tax receipts are immediately available after donation is done.

Donations can be sent by mail (indicate in memory of Orit Fruchtman) to
The Ottawa Hospital Foundation, 737 Parkdale Ave, 1st Floor, Ottawa, ON K1Y1J8.

Donations can also be taken by phone by calling (613) 761-4295.

1 in 8 women will get breast cancer. Research is the only path to finding better treatments and a cure to this disease, which has devastated our family and so many others across the world.

Love, Sean

“The true meaning of life is to plant trees, under whose shade you do not expect to sit.”  Nelson Henderson

This message had a very strong impact on me. Orit was a very smart woman. Sean is a doctor. I trust their judgement. And I agree with their priorities. 

Let’s do something great to honour a wonderful woman. Let’s help fund research that will effect real change. I donated. Will you?


for Orit (by Laurie)

July 14, 2012

photo: Andrea Ross/Mark Blevis

As of Saturday, June 30th, I have been in remission for five years. This is a huge milestone and I’m very fortunate to have the chance to mark it.


But I really didn’t feel like celebrating.


Just a couple of days before, my beautiful friend Orit passed away, leaving three young kids, a loving spouse and a large group of family and friends in deep mourning. I spoke to her husband Sean early on the day she died and afterwards posted on Facebook what was for me an unusually vague status update:

“Warning: This would not be a good day to tell me that everything happens for a reason. Sometimes wrong stuff just happens. And sometimes life is terribly unfair.”



So much about cancer is a crap shoot. Some get cancer, some don’t. Some walk away, others live with the illness forever. Some live for a long time and some die way before they are ready to go.


Orit had strength and determination and a great love for her family and community. She had access to the best health care and, prior to being diagnosed with Stage 4 breast cancer, was healthy and fit. She never stopped fighting to live and she most definitely did not lose a battle.


Despite the fact that we lived in the same neighbourhood, I met Orit less than a year ago, not long after her cancer diagnosis. Our illness brought us together but we soon found that we had so much more than than cancer in common. We both found humour in the world around us, sought to nurture our creative selves and wore our hearts on our sleeves when it came to those around us. I had the privilege of watching her face light up when her husband got home and the clear eyed love she had for each of her kids. We had the chance to talk about being in cross-cultural relationships and about the values we hoped to share with our kids. We talked about petty grievances and big ideas. And we shared our fears, hopes, sorrow and anger at facing the scourge that is cancer.


One evening, as we were yarn bombing our local community centre, Orit and I sat on the pavement sewing a 6 foot tube of yarn onto a bike rack. As we took turns holding the piece in place and passing the needle, she suddenly said. “I really wish that we had the chance to know each other before. We would have been such good friends.”


I felt my heart break as I struggled to find an appropriate and truthful answer. But I knew it would be wrong to say “We will get to be friends for a long time” or even “It’s going to be OK.” Instead, I said swallowing the lump in my throat, “I agree. I wish I’d met you sooner as well.”


The last time I saw Orit, we had tea on her front porch while she knit. She had been in the hospital the night before because of unmanageable pain. That morning she seemed fine, if weak. She talked about convincing her oncologist to try one last course of treatment and her profound grief at the thought of leaving her children. We both cried.


And then I left for a yoga class, borrowing a t-shirt before I left. It didn’t occur to me that I would not see her again.


A few days later, she was hospitalized. And a few days after that, she died.


I wish I had told her how amazing I thought she was. That I thought she was a great mother, an interesting person and inspiring in a way that transcended her illness. I wish I’d said how beautiful she was.


I’ve struggled for two weeks to write this blog post. Orit’s family have been so kind, loving and generous to me but I can’t help thinking how grossly unfairly life has treated them.


Which is why I haven’t felt like celebrating.


I am very lucky to be alive and I hope to be around writing blog posts in another 5 years. None of us knows when our time will come. We need to live bravely, love fiercely and hold on to the things that matter. We need to tell those we care for how much they mean to us and to do those things we always wanted to do. No matter how long we have on this earth, we need to truly live.


I, for one, plan on doing a little more yarn bombing. I have Orit’s last piece of knitting so a little bit of her will be there as well.


Care to join us?

video: Mark Blevis


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