Tuesday, December 31, 2013

Confessions of a Young, Bereaved Mother and Terminal Cancer Patient

In my 29 years here on Earth I have learned more about the ways of the world than many will in a lifetime. I have shared many thoughts, but most of my deepest darkest ones I have kept hidden, until now.

2013 has been one of the worst years of my life, 2007 being the worst. It was the year she died.

I remember that first year after she died. I cried myself to sleep for 7 months straight. My eyes were constantly dry and cracked from the tears. They would burn with every droplet and I felt as if you could actually see the bags under my eyes. I would scream in my head "I hate you, Shannon!” I hated her for dying. I did. She left me. It wasn't how life was supposed to be. She wasn't supposed to die before me. My future shattered. I never wanted to lose her, but forgetting her was my actual fear. Every month in the first year after she died I dreaded the 16th and the 19th. The first time a month passed and I didn't realize the 16th came and went, I was sure I already started forgetting her. As each day passed, I thought about her less and less. She no longer consumed my every thought, and I guess that was a good thing. I always said if I lost another baby, I would have no purpose and would not need to live. I would rather die than lose another one. But, I did lose our second baby, and I didn't die- I lived. I learned then how to survive.

And one day I felt this rush over me. It was peace. It was Shannon. She was okay, and I was okay. I felt at peace with her passing, and the loss of my second pregnancy. My grief seemed to plateau after that point. I have watched other mother's who have lost children go years past their child's passing and yet still be enveloped in that first year of grief. It's detrimental to your well being to be stuck in those frames of life as if they were to play out forever. I am not.

I am a bereaved mother. That is one thing that will never change about me, like it, leave it, love it, hate it- it is what it is. I am deprived of a daughter that I should have with me. I also lost a baby that never had the chance to even hear my heart beat. I should have 5 children with me, not just 3. I was asked, shortly before my diagnosis, if I had "gotten over" Shannon. The answer is no. You can never 'get over' a child that has died. Just because Shannon is not here does not mean she is easily forgotten. You see, my grief, it is a very nasty scab now, covered by a bandage. And sometimes, my bandage falls off, and my scab is exposed; and like any other scab, it bothers me; it itches, it hurts and sometimes it seeps. Then it needs time to heal again. One day, my scab will turn in to a scar, and I will no longer need a bandage to cover it, but I am many years from that. Healing is a delicate and extensive process. Shannon is, and always will be a part of my life, like any of my other children. I miss her, but my grief does not dominate me. Love does. On special occasions, when the wind is just right and the sun is at the perfect angle in the sky; I see my three little children running through the fallen leaves and I think to myself "Shannon, I wish you were here". Although my family will never feel complete, it is the love I have for her that now enables me to move forward.

After the twins were born I finally felt like I was a "real" mom. I finally was able to actually hold a baby, feed a baby, change diapers, hear cries- this was real. I welcomed every fit, every poopy blow-out, and every single drop of vomit on my shirt and every single cuddle. Even though being a NICU mom for the second time was a hard experience, having that role for a third time proved even more difficult. I nearly died having Stephen, and that is no understatement. I literally needed life saving measures, 3 surgeries and 7 blood transfusions to save us. All of which left me without the capability to ever bear children again. It has been hard for me, I never experienced that whole naive pregnancy, natural birth, bring your baby home from the hospital with you sort of thing. It is something I struggle with, I felt robbed of the normalcy of pregnancy, delivery and a newborn. Although at times it plagues me, I accepted it for what it was. A blessing. I was blessed to now have three children. I became a stay at home mother shortly after the twins had turned one. It was a hard adjustment, but I did adore it. Things became increasingly harder after Stephen was born. He had so many special needs related to his prematurity, so I always spent extra time with the twins. Life became easier to juggle, and even though at times I longed for a night out, I did truly love being a mom. It was what I was meant to be.

When Stephen was almost 3 is when the big blow came. We always had appointments and therapies for Stephen, and we were always ensuring that he thrived but it didn't control our life. After an appointment down at the hospital last fall, it was suggested that he was farther behind than what I thought. They suggested he needed intensive therapy 6 times a week. I felt like a failure. Maybe I was too selfish, focusing more on others needs instead of that of my son. It hit me like a ton of bricks. We started within a month having therapy one to two times a day five days a week on top of the girl's pre-school classes three times a week. Being a mom is tiring work, but being a mom to a special needs child, whew boy- now that takes nothing short of a saint to maneuver. It was rough, and it was tough, but I did it and I looked forward to learning from this experience in every way possible. And I was doing a good job. I was mom to three beautiful, loving kids.

And then, I became this: A Terminal Cancer Patient. As if I haven't gone through enough, as if I haven't bled, cried and begged to be a Mother for long enough, this came, and it threatened my very existence.

There are so many things that suck (seriously no other word), that just absolutely, unequivocally and downright suck about having a terminal cancer diagnosis. It's a huge burden of responsibility, unlike one I have never felt before. It wasn't one of my kids that I had to take care. That, compared to this, was manageable. I could handle being a mother that had to watch your child fight to survive. I wasn't the one fighting in those situations; I was a bystander watching everything unfold before me. I could handle the decisions, the pain and the anguish because it wasn't for or about me. As a mother, I have seen other mother's nightmares play out in my own life, like when my daughter's ventilation tube was drawn out of her mouth and she held on tight to my husband's hand and spent the next minutes dying in my arms.

Maybe, as a mother, your worst nightmare isn't your child dying- it's you dying. And there I was, sitting in a dark hospital room; having a doctor tell me she would try to save my life, realizing that all along, I should have been fearing the day that my children would be without me instead of the day I would be without them.

I try to act as if my life hasn't been disrupted, that I can still manage the kids, the husband and everything else but the truth is: I can't. I know, I know- I look okay, right? I got this huge smile on my face, and I am happy and laughing, but, don't you mistake all that for me feeling great, having it all together and worked out 'causeeee I don't. I have never felt so tired so quick, and have been in so much pain, have so many emotions run through my mind and have never been so unable to control a situation in my entire life. You have no idea how hard it is for me, the outgoing, gotta-help-everyone, can't-say-no, always-on-the-run, in-to-something-new-all-the-time, cooking-dinner-every-day, has-such-a-clean-house-you-can-eat-off-floors, has-everything-UNDER CONTROL----to not. This situation is uncontrollable. It is unable to be controlled. Even though I hate every bit of having cancer, I will be damned if I let it consume me so I try hard to put on a brave face, to be inspiring and uplifting.

And sometimes, well, most of the time, well, all the time- I feel sorry for everyone. I feel sorry people know me. I feel sorry people care about me and I feel sorry people love me; because, I am going to die on them. I know what it's like when someone you know, care about or love dies; it's horrible. It's a cruel tragedy. It can shape a person, it can break a person, and it can have long term effects on a person. I feel sorry for them because I know what my death could do to those people and I am afraid. I am afraid of hurting people more once I die. I am afraid of forging new relationships. I am afraid of getting close to anyone. I am afraid of continuing relationships. I am afraid that I will die at an age that my Godson will remember me. I am afraid that the people I inspire will be devastated. I am afraid my friends will have to endure things without my shoulder to lean on. I am afraid that my nieces and nephews will forever hold on to the day they said goodbye to me. I am afraid that my sisters will always say "I wish Katie was here". I am afraid that my parents will feel a pain I felt after Shannon died, a pain they will never recover from. I am afraid that my husband will feel abandoned yet again. Above all, I am afraid that my kids will never heal. I am so in love with so many people that it hurts my heart to the deepest depths to know that I will cause them pain; pain that may last for weeks, months, or years. I cannot handle that and some days my fear for everyone is enough to drive me in to solitude.

But the anger drives me in to isolation as well. I am naturally a short-tempered person. I become very angry, very quickly. I get angry at having cancer. I get angry at friends who stopped being good friends. I get angry at the family who has no regard for me. I get angry at people that take advantage of me. I get angry that people who take so much for granted. Their utter thoughtlessness and wanton cruelty boggles my mind- cancer bewilders me. It makes me insane. I want to scream and shout about it all. How dare you? How dare you mess up my life, cancer? How dare you abandon me, family? How dare you not keep your promises, friends. How dare you not treasure every single second of your life, people.

Then there are days the depression creeps in. I can feel all of these feelings simultaneously erupt like a volcano and wish I just wasn't here anymore. If I wasn't here, no one would suffer, myself included. I just want to be with Shannon.

And then I have these miracle days. They make me forget everything. God doesn't always answer my prayers, but, He sends me these reminders to let me know He is listening. Sometimes it's a gift from a stranger, like the man who paid for my over $80 transaction at Wal-Mart, and sometimes it is as simple as my 5 year old grabbing my face and looking intently in my eyes saying "I love you so much, Mommy". These days restore me. They rejuvenate me. They fill my drained soul.

I am young. I am a bereaved mother and a mother to three very small children, one with special needs and I am a terminal cancer patient.

2013 had been a thousand mile an hour emotional roller coaster that I can't stop. I am strapped in and feel like I am going to hurl, cry, or fall off at any moment. I have grieved over many things beside my terminal diagnosis. I have grieved the loss of my daughter all over again; I have grieved my relationships and have grieved my motherhood. If 2013 has taught me anything, it was that the unexpected happens. I have seen the best, and the worst of life all in one year.

2014 will not be easy, but in my last confession: I am totally ready for it.

Tuesday, December 10, 2013

The Unexpected

I've decided something.

Cancer isn't a death sentence, it's a living sentence. It's an opportunity to live your life to the fullest in the midst of your own mortality. 

Only I can decide how to live my life, not cancer.

I wrote that on my Facebook page last month.

The unexpected happens. Finding out I had cancer at 28 was completely unexpected and made me realize how quickly life could change, but it's made me realize that no matter how hard I tried to control it, I couldn't. I could, however, control how I handled it. 

The past few months have been a test. It hasn't been easy, in fact, it still isn't easy. I don't know that it ever will be. I learn new things every day. I learn about my friendships, my family, myself, and the world around me. Hence my utter lack of motivation with my blog. I have been busy having many life lessons and trying to handle them. Some good, some bad and all unexpected.

The changing of the leaves wasn't the only thing the Fall brought. It brought a change all around me. My hair had started growing back in from the first rounds of Taxotere and I looked normal. But, looking normal and feeling normal are two completely different things. As September turned to October is when the changes began. The change around me, the way others treated me, the way I felt, the way I looked was different. I handled the change as best as I could. And as October went on, the LemonAid the CURE stands had me out and about 2 to 3 times a week. I noticed myself becoming sicker and sicker, until I stretched myself out so thin that I could not physically move from my couch. The LemonAID the CURE stands were beyond my expectation, raising $5,000- $2,000 over my original goal; but I couldn't bounce back from the cold. I noticed it was becoming harder to do. My weakened immune system left me sick every other week, and chemo became harder to recover from each week. I gained weight every week, my hair was becoming thin yet again, and I was now looking at what becomes of a person on chemotherapy for nearly 11 months straight. But, in true Kate fashion- you didn't know, 'cause I don't complain, never have been much of a complainer.

Then, the really, really, really unexpected happened. The results of my scans showed stable mets in my liver and bones, and no evidence of disease in my breasts! I asked the doctor to repeat it two more times. I couldn't believe it! I cried. I never thought I would ever hear those words. As long as my scans were stable in February, January would be my last chemotherapies and surgery looked to be in my future. A feat we never thought we'd make it to.

Sharing the great news, and yet feeling so incredibly ill was an unequal balance for me. Everyone assumed I was fine. They started expecting things from me. They became angry when I could not complete their bidding. They expected me to feel good since I looked good. Not that I expected to be treated special, but I did expect to be treated a little bit more like someone in active treatment for Stage IV Metastatic Breast Cancer and less like a perfectly normal and healthy individual. But, everyone just, forgot I guess. I don't have a very good explanation for it. The expectations people had for me made me withdrawn and irate at times. I don't think I expected to see those closest to me start to abandon me. I expected for them to be more understanding. But, maybe I should not have had expectations of others. Such is life . . .

And that's okay. It's okay to me now. I know now how to handle the unexpected. I have only one battle to fight right now, and that is my life. I have made the decision to survive using courage, humor and grace. I am the Queen of my own life, and the choices to be made are mine. What cancer has done to rearrange my life sucks, but I am going to live my life to the fullest: with or without cancer, with or without certain friends, with or without certain family, with or without knowing if I'll be here in 5 years. I will not let anything control how I choose to handle the unexpected except for me.

PS- I shaved my head . . . again. Why? Well, it was massively falling out and because I may not be able to control my cancer- but I will control how to handle it.

Cancer Stricken Mom Working On Bucket List

Cancer Stricken Mom Working On Bucket List

Photo Credit: KDKA
Photo Credit: KDKA
Reporting Sarah Arbogast
Related Information
PITTSBURGH (KDKA) – A Belle Vernon woman is in the fight of her life, but you would never know it.
Kate Crawford is positive, optimistic, and upbeat despite battling Stage IV cancer.
Crawford was diagnosed with breast canceron January 25th. Within two weeks, she found out that the cancer had spread all over her body.
“The scans revealed that I was stage IV and that it had spread to both breasts, in my shoulder, down my ribs, in my liver, down my thoracic spine and into my pelvis,” said Crawford.
Crawford immediately started Chemotherapy treatments and came up with a “mommy bucket list.”
“I wanted to be able to record everything that I wanted to do and if I don’t get done with the list, at least they can look at it and they can know what dreams I had for them when I was a youngmom,” said Crawford.
One item on Crawford’s list was meeting Bubba, morning radio show host for Star 100.7. Friday morning, Crawford was able to cross that item off her list. She joined Bubba on the air to share her story.
“I’ve always been a listener and I love your show and you make me laugh so hard, on the way to chemo every Thursday, that is what we listen to,” said Crawford.
Bubba, almost speechless, says he was humbled to be on Crawford’s list.
“Hopefully we can look back at this bucket list and say oh my, I really never needed that, that would be the best,” said Bubba.
Crawford is asking others to help her with her bucket list. If you’d like to see it, click here.
If you’d like to follow her battle with cancer, you can click here.

Charity founder diagnosed with cancer hangs tough with New Kids on the Block

Charity founder diagnosed with cancer hangs tough with New Kids on the Block

Kate Crawford, 29, meets childhood crushes before concert at Consol Energy Center Charity founder diagnosed with cancer hangs tough with NKOTB

PITTSBURGH —The New Kids on the Block may sing about hangin' tough, but Kate Crawford lives it every day.
The 29-year-old mother of three and founder of Project Sweet Peas charity was diagnosed with stage 4 breast cancer in February.
The cancer has spread throughout her body, and doctors have given her less than a five percent chance of being cured.
"I don't think enough people really do think about the end," she told Channel 4 Action News' Andrew Del Greco.
So, Crawford is living in the now and embarking on her own "bucket list" of sorts.
One of the items on the list: meeting the New Kids on the Block. She got to do just that before their concert at Consol Energy Center on Tuesday night.

"When you're a little girl and have your little first crush on a celebrity, you'll never imagine you'll meet them one day," Crawford said.
She even got to ask the guys what's on their bucket lists. Some of their answers included flying an airplane and graduating from college.
Next up for Crawford is her family's first trip to Disney World. On Thursday, she'll begin her fifth round of chemotherapy.
"I think the most important thing is to be happy, have goals and aspirations and try to follow them through," she said. "No matter what obstacle gets in your way, you can still have a smile on your face and be happy."
Read more: http://www.wtae.com/news/local/allegheny/charity-founder-diagnosed-with-cancer-hangs-tough-with-new-kids-on-the-block/-/10927008/20528840/-/j9kqtn/-/index.html#ixzz2n5fBshU0

Mother dedicated to helping families braves cancer diagnosis

Mother dedicated to helping families braves cancer diagnosis

Kate Crawford taking leave of absence from Project Sweet Peas

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Crawford checking items off bucket list

Crawford checking items off bucket list

About Chris Buckley
Chris Buckley 724-684-2642
Staff Reporter
Valley Independent

Chris Buckley
Kate Crawford and her husband, Stephen, enjoy a toast of pink lemonade Tuesday, Oct. 8, 2013, outside Snaposhot 47 in North Belle Vernon.

By Chris Buckley

Published: Wednesday, Oct. 9, 2013, 12:01 a.m.
Kate Crawford admits that it took a terminal diagnosis to make her realize the need to truly “live life.”
And crossing items off her bucket list for her family is what keeps her going, Crawford said.
“It makes me take time to enjoy my family,” Crawford said. “Otherwise, I'd get caught up in the hustle and bustle of everyday life.”
Last summer, Crawford found a mass in her breast. It aggressively spread to both of her breasts, her right shoulder through her right ribs and thoracic spine into her pelvis and liver.
Doctors gave her a less than 30 percent chance of living five years.
That prognosis led Crawford to create her own “bucket list” of things she wants to accomplish with her family.
Crawford is nine months into her chemotherapy treatments.
Crawford co-founded Project Sweet Peas after her daughter Shannon died Jan. 19, 2007, with heart and diaphragm defects.
The national organization helps parents who have a child staying in a Neonatal Intensive Care Unit.
Crawford took a leave of absence from the organization after her diagnosis. She returned to the board of the national organization two weeks ago.
This summer, Crawford's family crossed several items off her bucket list.
The family rode in the Goodyear blimp in Ohio.
They also attended a Pittsburgh Steelers game, and her three children — twins Grace and Lilly, 5, and Stephen, 3 — each rode a horse at the Fort Wayne Zoo.
They made a trip to Myrtle Beach. Crawford hopes to eventually make a trip to Australia to visit friends. But this summer one of her friends from the nation “down under” came to visit, and they went to the Pittsburgh Aviary.
She is volunteering at a haunted house in the Valley this month.
One of her biggest list items — taking her children to Disney World — is being planned. Kate and her husband, Stephen, plan to announce the trip to their three children as a Christmas surprise.
Crawford is giving back, too. Throughout October, she is operating a lemonade stand at various locations throughout the Valley to raise money for cancer research.
On Tuesday, she was at Snapshot 47 Photos in North Belle Vernon. Today, she was expected to be at Chaney's Natural in Monongahela from 11 a.m. to 2 p.m.
Other stops are: Prime Rentals, Belle Vernon, 12:30 to 2:30 p.m. Wednesday; Belle Vernon Area football stadium, 6 to 7:30 p.m. Oct. 25; Greater Rostraver Chamber of Commerce, noon to 3 p.m. Oct. 26; and Checkers Boutique, 2 to 5 p.m. Oct. 29.
Crawford said she is already more than halfway to her goal of $3,000.
She will also take her “LemonAID the CURE'” stand to Magee-Womens Hospital in Pittsburgh later this month.
“They're really excited to have us and to have this happen,” Crawford said.
One of her bucket list items was so heartwarming it touched virtually everyone there to witness it, she said. During a Chartiers Valley youth football game Sunday, her 3-year-old son took the handoff and fulfilled his mother's wish, dashing into the end zone on the first play of the game.
Crawford admits she “cried hysterically” during the moving moment.
“I got so many messages from parents who were touched because those are things you take for granite,” Crawford said.
And she said there is a lesson in that for everyone.
“It shouldn't have taken cancer to realize how important my family is to me and how important my life is,” Crawford said.
“My hope is that other people stop and realize that and live life in the moment.”
Crawford's high school friend, Courtney McMahon, was with the Rostraver Township woman at the lemonade stand Tuesday.”As a friend, it makes me realize the need to take that time to spend with my family,” McMahon said. “When my 12-year-old has a softball game, I appreciate it more.”
“No matter how bad things are in your life, there's always things that are blessings,” Crawford said.
Chris Buckley is a staff writer for Trib Total Media. He can be reached at 724-684-2642 orcbuckley@tribweb.com.

Read more:http://triblive.com/neighborhoods/yourmonvalley/yourmonvalleymore/4846315-74/crawford-family-list#ixzz2n5dxwsVX 
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Belle Vernon woman's 'Mommy Bucket List' seeks end to cancer

Belle Vernon woman's 'Mommy Bucket List' seeks end to cancer

About Rossilynne Skena Culgan
Kate Crawford (center) of Belle Vernon gets help at her lemonade stand from (from left) daughter Grace Crawford, friend Jennifer DeWitt, son Stephen Crawford and daughter Lily Crawford.
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By Rossilynne Skena Culgan 

Published: Saturday, Oct. 19, 2013, 7:29 p.m.
Kate Crawford hopes a humble lemonade stand in the Mon Valley this month will reach two goals: Raising money to help cancer patients and accomplishing another item on her “Mommy bucket list.”
Crawford, 29, of Belle Vernon, was diagnosed in January with stage four metastatic breast cancer. The wife and mother of three drafted a “Mommy bucket list” of dreams and experiences she wants to share with her family.
So far, she's completed several items, including: Buy kids a swing set, teach kids to fly a kite, take kids to the aviary, see a dolphin in its natural habitat. Still on the list: Teach kids to read, take kids to the drive-in, watch kids have babies, live to see cancer cured.
One item on the list, “have lemonade stands with the kids,” is in the works during October. Crawford has already raised more than half of her lemonade stand fundraiser's $3,000 goal, much of which will benefit research.
“To me, I think of the kids,” Crawford said about the importance of the fundraiser. “It's important to find a cure not only for me but for the other moms that are going to be stripped away from their children or for the children that are going to die from cancer. It's time for a cure. It's just time.”
The lemonade stand, called “LemonAID the Cure,” is traveling throughout the Mon Valley area, including Belle Vernon and Monongahela, offering lemonade at 50 cents per glass, lollipops and information about the organizations benefiting from the fundraiser.
Crawford said she noticed the need for funds to directly benefit research, especially as the number of young women diagnosed with breast cancer increases.
Of the proceeds, $2,000 will be given to Magee-Womens Research Institute and Foundation, and $500 will benefit UPMC Cancer Center at Magee-Womens Hospital. The remaining $500 will be used to buy colorful decals for IV bags, which are “shown to increase the overall wellness of a patient,” Crawford said.
Crawford will host a lemonade stand at Magee, where she goes for weekly chemotherapy treatments.
Other future stops include Belle Vernon Football Stadium, 6-7:30 p.m. Friday; Greater Rostraver Chamber of Commerce, noon-3 p.m. Saturday; and Checkers Boutique, 2-5 p.m. Oct. 29
She's now in her ninth consecutive month of chemotherapy. Doctors gave Crawford less than a 5 percent chance of being cured.
“I understand what's going on, and I know how bad it is. But I'm not going to (curl) up ... and cry,” she said. “If we can get money and find a cure for breast cancer, then I won't have to worry about it.”
Crawford's form of cancer is particularly aggressive.
After her diagnosis, she felt compelled to create the “Mommy bucket list.”
“It's all the things that I want to see my kids do. And all the things I want my kids to know of my dreams,” she said. “I know I'll never go to Ireland, but I want my kids to know that's one thing I wanted to do.”
Crawford said her family — husband Steve, 5-year-old twins Grace and Lily and 3-year-old Stephen Jr. — is “very, very close.”
“I have lived a good life. I don't need or want for much more; but when it comes to my children, husband and family, there are still a lot of things that I would like to experience with them,” Crawford wrote on her website called “The Chronicles of Cancer: The Mom, the Breast and the IV Pole.” “We are young. Too young to have mortality shoved in our faces.”
Rossilynne Skena is a staff writer for Trib Total Media. She can be reached at 724-836-6646 orrskena@tribweb.com.

Read more:http://triblive.com/neighborhoods/yourmonvalley/yourmonvalleymore/4868045-74/crawford-cancer-kids#ixzz2n5dfQUDK 
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