Yeah

I was melencholic. I ended up crying for a few days. I just had a deep and overwhelming sadness that needed to release. I have just woke up from a nightmare. I found a picture of me and Celia. I think it was taken a few months before I was diagnosed. She is nursing from my left breast. My breast that now has a big chunk taken out of it and has been radiated 30 times with whopper gamma rays. I'm so happy to be where I am but do love to look at that picture taken just prior to the nightmare.

Thanks be to God

I'm rather melancholic today. Seems as though I've woke up from a dream, a nightmare but I have that lingering sadness or fear from a night of fowl dreams. I'm sure it will subside but I want to acknowledge it.

We went to church yesterday for the first time in a while. We felt obligated since Erin will be celebrating her First Penance in a few weeks. We've been sending the kids off to Religious Education but not attending mass. Yes, we're catholic. This is how it happened. I was brought up by hippies and had no formal religious teaching though we did attend a Presbyterian church for a short time when I was in elementary school. I then attended church with a friend's family in high school. I was drawn to learning about religion and spirituality. I was even voted "most philosophical" in high school, whatever that means. When I went to college I became a Buddhist. I chanted nam myoho renge kyo and subscribed to the devotion of the mystic law of cause and effect. But, there was a disconnect for me because the religion was tied up in the culture of Japanese Buddhism. I couldn't completely relate. I married Paul, a professed atheist brought up in a catholic family. We were married by a JOP and didn't think much about religion until we were in the Peace Corps and surrounded by a surreal mix of Catholicism and Mayan tradition. It was amazing. We started attending church and I became connected to Catholicism from a religious and cultural stand point. My peops were Irish Catholic. And then we went to Esquipulus a small town on the Guatemala and El Salvador border. The town's church has the statue Jesus Negro or the Black Jesus. It is a statue known for granting miracles. We watched as people crawled on their knees from the town's border to the church. It was an incredible spectacle. And it was there in that church that both Paul and I had a palpable sense of God. A month later I became pregnant with Rachel and during my pregnancy I attended RCIA (Roman Catholic Initiation for Adults) classes with Father Tito in Norwich, CT. Father Tito was an amazing man and true saint. Paul and I were remarried in the church and all our children have been given Catholicism as their base for spirituality. I know that many people have problems with "the church" and there are times when I do too but the fundamental teachings are profound and resonate with me. I continue to connect with the energies and teachings of other spiritual leaders and religions but am Catholic. Don't be frightened. I'm still a HathaMama. I still meditate each day in an effort to quiet the mind. I do yoga and believe in power of chanting Om and I bow to you with respect--Namaste.

still snowy

I couldn't figure out how to upload a song onto my website. But, please check the song out. It's on Putumayo Presents ONE WORLD, MANY CULTURES

I am well and continue to enjoy one day at a time.

we miss you molly

OK, so sometimes I want to play in the land of da Nile. What's wrong with that? Just a day or two pretending there is no such word as the word that must not be named...begins with c....shhhhhhhh! So I'm trying to frolic on the shores of da Nile when I hear that Molly Ivins dies. I'm really sad over this for a number of reasons that I'll get to later.

then...I tried to escape at the JCC where we are new members and I'm trying to get in shape. Three miles on the treadmill was my limit. I am so out of shape. Anyway, on the TV in front of my treadmill...2 times in the 45 minutes I was huffing through my 3 miles...there was that commercial with the guy who is dying from lung cancer and he's talking about missing his sons and then it says he's been dead since 1991. For some reason, I thought he was still alive and that little thing just nearly threw me off the back of my treadmill going at a snails pace. Cancer sucks. I've seen the t-shirts and I always thought I'd wear the ribbons before I wore the pissed off cancer sucks paraphernalia. But, I'm seriously considering tattooing something dark like...cancer sucks...next to my cancer fairy or whatever I get.

I need to start thinking about my next tattoo which will commemorate my cancer journey. I didn't expect to get another so soon. I have one that I got when I got married...sunshine on my shoulder. Another commemorating the end of childbearing...a Celtic circle with 3 intertwining images with a colored dot representing my 3 girls. I have no idea what image would best encompass this journey...my aunt wanted me to get a pink ribbon and she wanted one too. I was repulsed at the thought of tattooing a pink ribbon on my body. That would feel to much like "claiming the cancer" to me. No offence to my aunt or anyone else that tats a pink ribbon on their flesh. It's just not for me.

OK, back to Molly Ivins who had INFLAMMATORY BREAST CANCER. Yes, I said INFLAMMATORY BREAST CANCER (IBC). This is a rare but VERY aggressive form of breast cancer. There is NO cure. There is keeping it at bay for awhile...sometimes a long while...sometimes a short while...but NO cure. Every woman and husband and sister and mother and brother should know what this disease is and how it effects entirely too many families.

:::::breathe::::

Molly Ivins' last article

link to article

Enough is Enough
By Molly Ivins
The Texas Observer
Friday 26 January 2007
Stop it. Now.
The purpose of this old-fashioned newspaper crusade to stop the war is not to make George W. Bush look like the dumbest president ever. People have done dumber things. What were they thinking when they bought into the Bay of Pigs fiasco? How dumb was the Suez war? How massively stupid was the entire war in Vietnam? Even at that, the challenge with this misbegotten adventure is that WE simply cannot let it continue.
It is not a matter of whether we are losing or will lose. We have lost. Gen. John P. Abizaid, until recently the senior commander in the Middle East, insists that the answer to our problems there is not military. "You have to internationalize the problem. You have to attack it diplomatically, geostrategically," he says.
His assessment is supported by Gen. George W. Casey Jr., the senior American commander in Iraq, and the Joint Chiefs of Staff, who recommend sending more forces only if there is a clear definition of their goals.
Bush's call for a "surge" also goes against the Iraq Study Group. Talk is that the White House has planned to do anything but what the group suggested after months of investigation based on much broader strategic implications.
About the only politician out there besides Bush calling for a surge is Sen. John McCain. In a recent opinion piece, he wrote: "The presence of additional coalition forces would allow the Iraqi government to do what it cannot accomplish today on its own-impose its rule throughout the country ... By surging troops and bringing security to Baghdad and other areas, we will give the Iraqis the best possible chance to succeed." With all due respect to the senator from Arizona, that ship has long since sailed.
A surge is not acceptable to the people in this country - we have voted overwhelmingly against this war at the polls and in the polls. (About 80 percent of the public is against escalation, and a recent Military Times poll shows only 38 percent of active military want more troops sent.) We know this is wrong. The people understand, the people have the right to make this decision, and the people have the obligation to make sure our will is implemented.
Congress must work for the people in the resolution of this fiasco. Sen. Ted Kennedy's proposal to control the money and tighten oversight is a welcome first step. If Republicans want to continue to rubber-stamp this administration's idiotic "plans" and go against the will of the people, they should be thrown out as soon as possible, to join their recently departed colleagues.
Anyone who wants to talk knowledgeably about our Iraq misadventure should pick up Rajiv Chandrasekaran's Imperial Life in the Emerald City: Inside Iraq's Green Zone. It's like reading a horror novel. You just want to put your face down and moan: How could we have let this happen? How could we have been so stupid?
As The Washington Post's review notes, Chandrasekaran's book "methodically documents the baffling ineptitude that dominated U.S. attempts to influence Iraq's fiendish politics, rebuild the electrical grid, privatize the economy, run the oil industry, recruit expert staff or instill a modicum of normalcy to the lives of Iraqis."
We are the people who run this country. We are the deciders. And every single day, every single one of us needs to step outside and take some action to help stop this war. Raise hell. Think of something to make the ridiculous look ridiculous. Make our troops know we're for them and trying to get them out of there. Hit the streets to protest Bush's proposed surge. If you can, go to the peace march in Washington on Jan. 27. We need people in the streets, banging pots and pans and demanding, "Stop it, now!"

You will be missed Molly!

Still is Still Movin'

Today I wore a different bra and had a ton more tinges. I hate those reminders that my breast was "microwaved" and is rubberized like a chicken breast.

I'm thinking a lot about a friend who is having some issues related to her cancer. I'm sending Betsy and her family tons of love and light. Also, my other friend Joanie got crappy news recently. Joanie inspires me and is one of the most beautiful people I know...lymphedema and all! ;) I love her and her family and hope to get together with her soon. Maybe sledding (the kids and men) and Joanie and I can have a hot toddies by the fire.

I'm loving a duet by Toots and the Maytals with Willie Nelson.

It's called... Still is Still Movin' To Me.

I'll try to get a copy of the song on the blog tomorrow. It's got a great reggae rhythm and it's my life. Life goes by quick sometimes and sometimes it's a raging river. Me I want to float down that river feet first within that busyness that raging and find the calm, the stillness within me...

snow

Buffalo is beautiful and cold and it just keeps snowing.

New Year

I haven't been motivated to write anything. I just felt that I wanted to breathe and not define anything with words. I went from finishing radiation to the excitement of christmas and the new year. When I wasn't busy with everyday life I wanted to breathe. I did write a new year letter to everyone but didn't send it. I still have gifts to send. I will.

Here's a copy of the letter I wrote...

Happy 2007!!!

Here’s an update from the H-C’s. This new year we celebrate the new house, the new schools, the new friends and the new Barb. But, like the song says, “Make new friends but keep the old…”, how grateful we are to our “old” friends, our family and all the angels that have come into our lives this year.

Rachel is on the Amherst U11 girl’s Travel Team for soccer. This is exciting. She is practicing all winter at a couple of indoor arenas (remember we’re in Buffalo) in preparation for the spring tournaments. She danced in the Nutcracker at the Center for the Arts at UB under the direction of Maris Battaglia, the woman who owns the studio where she takes ballet classes 3 days/week. She likes the new studio but will always have a place in her heart for the Reston Conservatory. She’s playing the flute and was asked to try out for the All County Band in January. She’s doing wonderfully in school and making friends and next year she’ll be attending Amherst Middle School. Wow.

Erin has had a smooth transition to the new school. She is in a wonderful class with a super teacher. She’s made some good friends and had a slumber party for her eighth birthday in December. She played soccer in the fall and looks forward to spring soccer too. She loves school and is doing great in all her subjects. She loves to play on the computer and got Nintendo DS for Christmas. She takes care of Stella and loves to take her for walks in our backyard and she keeps track of the wildlife that stops by our creek. She is happy and has hit her stride in all ways.

Celia is the life of the party as always. She goes to preschool 3 days/week at Audobon and has made some friends at school. She started taking ballet classes and loves it. She’s quite good and her teacher seems to enjoy her presence in the class. She also likes to visit Papu (my dad) on a regular basis, now that he’s retired. He has watched her quite a few times while I’ve visited my team of doctors and they’ve developed a very special relationship. We have just started to have fun during the day, now that I’m done with treatment and we look forward to visiting all the kid stops; museums, parks, and playplaces in 2007. She’s turning 4 on Jan. 13th.

Paul is happy in his changing role from primary caregiver for his ill wife and 3 children to environmental engineer at Ecology & Environment. He has some interesting projects he’s working on in various locations around the world. He took the Professional Engineer’s exam and is waiting for the results. He is looking forward to getting the canoe in the various creeks in Western New York in the New Year. And we’ve started some projects on the new house. He’s working on making the house more energy efficient now that we live in the “north country”. We continue to grow in love for one another. We’ve shared many adventures in the 16 years we’ve been together.

I am doing well. I’ve finished my daily trips to Roswell Cancer Center for radiation treatments. My hair is coming back after the effects of chemo. My energy level is returning and I’m so happy it’s 2007. I was diagnosed with breast cancer on March 31, 2006. That day was the beginning of the fight for my life, though I didn’t know it at the time. I could never imagine the journey that cancer would allow me to take. I’m changed. The girls (Rachel, Erin) and I went to Dreamgirls and loved it. In many ways I’m like Effie because I’m changing… “Look at me, Look at me. I am changing, trying every way I can. I am changing, I’ll be better than I am.” Cancer has changed me. I live every minute, every day differently. I only do things that make me better, that make my family better. I think differently and do things differently. I started doing the things that I love everyday because every day is a gift. I belong to a studio and spend time thinking about clay and throwing it on the wheel. I love it and it brings me joy. I have some other projects planned for next year and they are all exciting endeavors that will be about living stong! Livestrong. It is a message that took cancer for me to really understand. How grateful I am to be here now wishing you all a glorious New Year full of wonder and strength. I am so thankful that I am here, able to be spending time and visit with my very wonderful family—Mom, Dad, Meg, Hannah, Quinn, Barb, Dan, Gus, Rita, Mary Jane, Scott, Sarah, Nate and all the rest of my very large and loving family. I’m grateful for all of my family, new friends, and “old” friends. Thank you for all that you’ve done for me.

I’ll end with my prayer that you livestrong, as in the words of the Lance Armstong Foundation’s manifesto.

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.

With Love and Joy and Peace,


Barb
for
the Family
Paul, Barb, Rachel, Erin and Celia

My Clarence

I'm so happy I'm alive. And cancer was my Clarence. I just watched some bits and pieces of "It's a Wonderful Life". Like George, this year filled me with reminders that I'm glad I'm alive. I am so happy to have touched the lives of the people around me and I'm so grateful for the moments where others have really touched me. Of course, the real important moments and things that people have done for me have little to do with material things or with impressions. It's when real people have showed real emotion. That's what I'm grateful for. There have certainly been a number of angels along the way. Those people that said the perfect thing or contacted me at the perfect time to help me see the way, stay on the path.

But, now I want to simply live. Live in the spirit that has made me love life.

Quiet and calm. Simply be.

Not Again

I can't believe this is happening again. I really thought that all this cancer suffering was behind me but just when I was starting to feel pretty comfortable and content,....radiation takes a burn for the worse. I have been suffering with what I'd describe as a wicked sunburn the last 4 or 5 days. It's been described to me as more like a chemical burn in it's reality but since I've never HAD a chemical burn it's like a really bad sunburn to me. But, tonight I noticed blistering in some of the bad spots. Great. I have three more weeks of this. I'm pretty devastated and have been thrust into a bit of a depression or it could be intense cancer fatigue. I don't know and I since I don't care, I'm leaning toward depression.

I'm pretty sure everyone around me is sick of this too. I haven't shared my isary with very many people because everyone just wants it to be better. I hate being the carwreck in everyone's life.

Nights are the worst. It just stings and itches and hurts like hell and I can't sleep. Ugh.

Halloween

Geeze Louise. Tomorrow I'm starting NaNoWriMo. I'll be writing a novel in 30 days. I still am not sure which story I'm going to write yet. Yikes. I have a couple good ones brewing but don't have an idea of how they actually end or really a clear idea of where I'll start tomorrow. Crazy. I'll try to continue to blog throughout the process and may even include some excerpts.

I started a pottery class last Monday. I went again yesterday and as it turns out I'm great at it. The instructors were amazed. I think it's my super power that I gained from being dipped in chemo poison. Anyway, yesterday I cranked out two gorgeous bowls and 3 plates. Keep in mind this was my second class and most people were struggling with centering the clay on the wheel. I just love the feeling of clay, the abondonment of worry, life and everything when I'm working on a piece. I'm just concerned with molding it into something beautiful. It's so freeing. I wish I could spend my days in a studio. I haven't been happier in months, years? I don't know.

I'm actually enjoying the process of throwing clay more than writing. It's less emotional. It's just what it is and I don't have to explain myself or anyone else. I love it.

Saturday with electricity and phone!

I know. I know. It's "not about the hair" but can I tell you how geeked I am that my hair is coming back. Today when I came out of the shower and dried myself I was stunned when I rubbed my head and their was actually water accumulated in my fuzz. I was so thrilled. It's been months since I've had any hair. I slowly went shorter over the months in anticipation of possibly losing my hair so, that by the time it came out in clumps it was only about a quarter of an inch long. I had very thick hair and although it was short there were several million (who knows exactly how many hairs we have on our head?) very short hairs. Within a day I probably went down to 100 and then within the 2 months I was on chemo I probably went down to about 10 stray hairs. So, imagine my surprise when I could account for some water in my fuzz. Wow. I'm going to be done with this a be well, be better for it. This is a hopeful thought.

I love my radiation oncologist. She's right out of her residency and she's smart and idealistic. I love her. Her name is Dr. Fernando and she's great. My radiation techs are another story. There is one I kinda like. One is a smoker (yuk!) and she's the one that told me I'd get used to it. "It" being walking with a hospital gown untied through a waiting room full of people. I said that would be impossible and no one should be forced to lose their dignity even if they have cancer. I'm not "used to it" and choose to wear a sweater over my gown but IT is getting easier.

Ode to Jan and Mariam

I'm sad. She was someone I knew through the internet. I never actually met her and only corresponded with her once. She wrote Cancer Made Me a Shallower Person. I'm going to miss her though I'd never met her.

Jan from my wellness group died too. I'm so sad.

This freaking cancer thing. My tumor is getting smaller but the cancer experience continues to grow.

I'll miss you Jan and Mariam.

Friday the 13th Storm

Dear God,

I'm tired of drama. I'm hoping like crazy (and praying too) that 2007 will be UNeventful. I'm actually hoping it will be boring. I want time to read, clean, scrapbook, and just live. Anyway, hoping you get this message and put me on the books for nothing in '07.

Love, Barb

I'm living on a mattress on the floor at my parents. We have massive tree damage, a utility pole down in front of our house and it's freaking October!! What the...? I actually think that the epicenter of the storm was our house. It's like a war zone. I woke up Friday to 2 1/2 feet of snow and all the trees in our neighborhood damaged. We couldn't drive out of our house until late Saturday. I was supposed to start radiation on Friday. I didn't want to. I'm afraid I may have willed this storm into being so I could get out of radiation on Friday. It didn't really help, as it only prolonged the inevitable. I started radiation on Monday. It sucked, as I imagined it would.

It's a rotten, horrible joke that the woman (me) who hates hospitals and choose to have a homebirth now has to lay on a cold table and get radiated EVERY day for 6 weeks. It is wrecking havoc on my blood pressure. Every time I go in that fluorescent lamped, stark room with the giant machine that whirrs and whistles, my heart rate accelerates.

wednesday

the house is overwhelming me
anxious about radiation starting
trying to get life completely in order
before it starts
of course
impossible
raining again
needing time for me
it seems
or not
perhaps needing a friend
difficult to make friends
while undergoing cancer treatment
just don't want to open up in
that way
we'll go to Gilda's Club
Noogieland
tonight and I'll see my pals there
and hope that I can get through a room
tomorrow

This is Crazy but Fun

What psycho things have I done in the last 24 hours? Well, I signed up to write a novel in 30 days. CooCoo! I havn't finished unpacking the boxes in my house. I haven't organized things that are already unpacked. I live with piles of magazines and books lining my walls. I feel like my Aunt Hotchie, who was a borderline horder. How in bloody hell am I going to do this? Just thinking about it makes me smile though so, I must be on the right track. If anyone joins me PLEASE let me know. We can support each other by encouraging each other not to cook or clean but to WRITE. Ahh, joy.



Also, if that weren't enough. I signed up for the Avon Walk for Breast Cancer. This is a 36 mile walk in May. I can barely walk 3 miles without feeling exhausted these days. Holy crap. Am I mad? Again, this is all making me smile and I'm just following that joyful feeling. Insane I know.


You can check out my Avon Walk website here.

9/28/06

Kids home
Erin got sick last night at
Friends house for dinner
Saw old mentor -- Walter
Taught me to be activist
Found out not gene mutation
Good news
I guess wonder why if not genes
Nurture or Nature
Was it environment I created or
Environment you created

And still it rains...

Yes, it's true.

This is not the most flattering bald shot but it is a bald shot. Rachel got a cell phone with a camera and took this very close shot with her phone. This is me now. The hair isn't coming in yet either. I feel a little stubble but there isn't anything to show for it...I still look bald.

Thanks for the Materials *

Since I was diagnosed with cancer I've had many friends and acquaintances give me books, articles and recordings about disease, healing, nutrition, etc. I love to read these things and always, take what I need and leave the rest but sometimes, when I'm not feeling super confident, I wonder if there is the slightest bit of criticism on the part of those who send me these books. It's as if people think I'm lacking some insight or understanding into why I have this disease or how I can heal from it. I know that this isn't their motivation, or at least isn't the motivation of most of my friends, but I wonder.

I've sent numerous books on parenting/breastfeeding/birth to many of my friends and relatives. I always thought that I had a perspective that they may not know. I'm certain that I've helped a number of people find their way in parenting by sending them books but I may have also made some feel criticized. This is new insight for me.

I think I'll start asking new parents to share with me their new perspectives, insights and knowledge. What have they learned on this journey of parenting? I certainly don't know more than anyone and don't assume to know what an individual is ready to hear or learn. Everyone is on their own path.

So, now that things have calmed down and I'm feeling better and becoming more myself. I realize that I have the knowledge, the strength, and the ability to heal within ME. Not in a book, a religion, a specific prayer. If these things resonate with my inner being than they can help me to heal or to tap into my own strength and ability to heal.

* This isn't meant to make anyone feel bad or not send interesting articles. I love the information. This is about me and how I receive the information.

Finding Compassion

This seems to be turning into a cancer blog. It's ok. It's me now.

Paul's grandpa died on Monday and his family is converving on WNY. This will be a lesson in compassion. There a few members of Paul's immediate family that have not attempted ANY contact during the "chemo" experience. It's so glaringly insensitive, as I've received dozens of prayers, notes and e-mails from good friends and some acquantances even. I met a friend of a friend last summer one time. She sent me a lovely card just saying she was thinking of me. Compassion. I know that some people are just not equipped to experience life. That's sad. That's the place where compassion comes from. Understanding that people's actions are not about me but about them, I suppose.

I'm very excited that I'm going to see His Holiness The Dalai Lama next week. He's speaking at UB.

Still not in a place of inspiration to write. Here is a link to a great essay from NPR. It's not about the hair. It's not.

Not About the Hair

Inner World

Clearly, I haven't been inspired to write lately.

I've been so caught up in dealing with getting healthy and making it through chemo. It's been a full time job. Also, I'm caught up in my inner world. I spend nearly the entire day visualizing, paying attention to my thought patterns and trying to make it through the "labor" of chemo. Really, it's been like a contraction...One giant 8 week contraction that took all my focus, energy and strength to endure.

And now, I'm slowly...slowly...starting to come out of it.