Crew Mission volunteers will decorate home of Rostraver family

By Chris Buckley Staff Reporter 
Wednesday, Nov. 26, 2014, 11:24 a.m.

 

Kate Crawford was thankful to have the holidays to spend with her family.

But a literal bad break threatened to crush their holiday spirit. And although the season had ended for a locally-based mission, The Crew Missions Inc. stepped in to preserve the holidays for the Rostraver family.

On Saturday, volunteers will decorate the Crawford home for Christmas.

After learning her husband, Stephen, would be laid up for weeks with a broken fibula in his leg and a torn ACL and meniscus in his knee – plus surgery – Kate Crawford contacted Crew Missions founder Judi Robbins.

“As soon as he got hurt, I said, ‘I need help with the Christmas lights.' I know it's not the season (for The Crew Missions), but I need help. I can't do it myself,'” Crawford said.

Crew Missions is a faith-based volunteer program that helps people with small projects in and around their homes in Pittsburgh and the surrounding area.

Robbins said public support has grown because most people in the Valley are aware of Kate Crawford's story.

The Rostraver woman created a Mommy Bucket List after being diagnosed last year with stage IV breast cancer. It has since spread to her spine and pelvis.

Crawford and her husband have 6-year-old twin daughters, Grace and Lily, and a son, Stephen, 4.

Robbins said The Crew Missions season ended in October, but she was touched by Crawford's request.

“I knew in my heart I could not leave her hanging with no help,” Robbins said. “I felt the need to organize it. We're aware of the family needs.”

Robbins sought help from friends in the Greater Rostraver Chamber of Commerce, family members and Valley residents. About a dozen have volunteered, although others are welcome. To help, call Robbins at 412-708-7328.

“It's turning into a community effort of people coming together to bless the Crawford family,” Robbins said.

The volunteers will meet Saturday at the couple's Rostraver house to decorate and hang Christmas lights.

Some volunteers will do crafts with the Crawford children.

“At Christmastime, everybody wants the spirit of Christmas to remain,” Robbins said. “If we can give a little bit of time … that's what Christmas is about.”

THE MISSION

The group formed in 2012 as The Crew. It was based at the Crossroads Community Church of Jefferson Hills.

“One day, one person told us we were a great crew mission within the community, and it just clicked for me,” Robbins said of the name change.

Robbins serves as president and secretary of the nonprofit charity, which is overseen by a seven-member board.

“We have remained faith-based,” Robbins said. “We pray with the homeowners, and we will pray with volunteers and witness with them.”

The Crew Missions' volunteers perform such tasks as pulling weeds, trimming hedges, painting homes, mulching and laying stone.

The group works Saturdays from April through October.

“The majority of the homeowners are elderly with medical conditions, but we have helped younger homeowners who are financially struggling and working so much they do not have time, or are taking care of family members who are ill,” Robbins said.

This year, The Crew Missions helped 18 homeowners.

It is always seeking contributions, whether monetary or tools. Gift cards are welcome because they can be used to replace tools.

“All funds are used to keep the organization going and help homeowners,” Robbins said.

CRAWFORDS GRATEFUL

Kate Crawford said the family feels blessed by the outpouring of support.

“We're so thankful, especially with it being Thanksgiving week,” Crawford said. “We really needed the help. It's hard having Steve out because he's the one that does things when I can't.”

Crawford said she was worried how the holidays would work out for her family, especially her children.

“This makes their Christmas,” said Crawford. “When we normally decorate the Christmas tree and put up the lights, they are so excited. It is such a magical time with them.

“I am so thankful to be around for another holiday and have the opportunity to spend it with them.”

I just want a break.

A break.

It’s the only thing I’d like. A span of 3 months where I didn't worry about cancer, doctor’s appointments, surgeries, medicine, therapies or anything else but my kids, my husband, my dog, my home and my family. You know, those normal things people worry about- I’d like to worry about that. Apparently it’s too much to ask for.

The last time I left you, I was starting physical therapy for my hip metastases and a compression fracture in my spine. Getting a second opinion for a double mastectomy would be on hold for a couple months. Well, it’s going to be a lot longer than that now . .

Our dog started not doing so well after one of her shots in September. We had her to the vet every other day for weeks trying to figure out what was plaguing her. She started itching, became lethargic, was losing hair; we just couldn't figure out what was causing it and nothing was helping. After about 3 weeks, she was diagnosed with an immune disease which was causing her to not be able to control skin mites (which every dog, animal and human have). Thus causing a severe skin infection. For a month straight she needed doses of Benadryl, Pepcid (because she wouldn't eat) her antibiotics, her medication to treat the mites, and a bath every other day. She has gotten skin scrapes every 6 weeks along with new doses of medication, which causes neurological side effects. She won’t be deemed “cured” until it has been one year since her last clear skin scrape. We were finally able to get her scheduled for a spay that we had to put on hold because of her infection. She has been doing better lately, but the added stress of a dog with special needs was a lot to handle. 

As if the cancer and the dog weren't enough to make me crazy, I was also trying to figure out why it seemed that Stephen wasn't making any improvements with his speech. I’m going to skip over exactly how this came to be and get to point. We took Stephen down to the hospital for an evaluation, where we found out that he had a submucous cleft palate. The boy has had numerous doctors, therapists and specialists in his mouth since he was born and it took this guy all of 2 minutes to diagnosis him. Of all the times I felt like a horrible mother for putting my health first and not his, for blaming myself for him not making improvements, feeling wretched about him getting kicked out of therapy for not improving- it was all answered in one day and I realized: it wasn’t anything I’ve done. I didn’t fail him. The specialist said no matter what we would have or wouldn’t have done, he would have never made any improvements. In fact, since this was caught so late, therapy has had the reverse effect on him, actually making his speech worse. Now the problem lies in that Stephen only knows the incorrect way to produce sounds because he has compensated for so long trying to make the right ones. I just cried. I was happy to know and devastated at the same time. He will have surgery in January, which is a simple surgery. It’s the recovery that will be tough. He will be in the hospital for a little bit and on a liquid only diet for 2-3 weeks. Then he will move to a puree diet for 2-3 weeks, all while he is in arm braces so that he does not stick anything in his mouth. If he is cleared at a 3 month post op checkup then he will have to go in to intensive speech therapy- where he will have to re-learn how to speak all over again. His recovery time will be around 6+ months. Given our family history, and Stephen’s extensive list of different diagnoses, it was suggested that he be tested for a genetic mutation called 22Q Syndrome.  The deletion or duplication of the 22Q chromosome could be the result of over 200 varying disorders. Some children may only have a few, and some kids many. Given Shannon’s history of the heart and diaphragm defect, Stephen will need an echo-cardiogram to check his heart. We will have some baseline labs drawn and then he will meet with a genetic team in January to discuss the syndrome and have a special panel drawn to check for chromosomal abnormalities. If this is what he does have, then it means a long road ahead of us. 



I have been so busy scheduling appointments for Stephen that I have been working on this blog post for over a month. I waited so long in fact, that it seemed that more things just piled on top. Steve had been having a lot pf pain in his knee for a while and I finally made him an appointment to go get checked out. Yeah- he has a fractured fibula and torn meniscus and ACL. He is in a brace and off work now for 7 weeks. He has surgery tomorrow.

Did I mention Molly has surgery Thursday? Oh and SJ's echo-cardiogram down at Children’s at the crack of dawn the same day. Aandddd I got a call from my Endroconologist that said I was in menopause. Dude, I’m 30. And menopause sucks. This all sucks.

Everybody says “You’ll be fine”, “This will pass”, and “You’re strong”. I know all those things. However, don’t you think it’s a bit much? I am losing my damned mind! Literally losing my mind- I lost my car keys a couple weeks ago and had a complete meltdown like a 2 year old's temper tantrum.


I just want a break. I’m not sure why this has been the icing on the cake for me thus far, but I have a lot of questions that I normally didn’t care to understand. I don’t understanding suffering or grief. I don’t understand why some go their whole lives with no tragedy and others, like myself, are modern day Jobs. I can handle one thing at a time but not twenty. I am finding myself slipping back in to a depression. There is so much going on. Too much. It’s hard to remember things. It’s hard to enjoy things. It’s hard to get motivated. It's just hard to live.


There’s oncologists in Hawaii, right? I want to take a break there.

Belle Vernon Mom and Breast Cancer Survivor Recognized with National Award

Belle Vernon Mom and Breast Cancer Survivor Recognized with National Award 

Kate Crawford is one of eight women named as a 2014 Pink Power Mom

ATLANTA, (Oct.1, 2014) – The Kids II Foundation’s Pink Power Mom network has named

Kate Crawford as a 2014 Pink Power Mom. Joining seven other moms and breast cancer

survivors from the United States and Canada, Crawford was selected for persevering through her

battle with breast cancer and for her efforts to help others in their fights. All eight Pink Power

Mom honorees have worked to positively impact their local communities by using their breast

cancer fight as a catalyst to make a difference.

Crawford lost her first daughter when she was only three days old. This prompted her to start a

non-profit to help grieving parents. Following that heartache, she had twins (now five) and a son

(now four).  In 2013, Crawford was diagnosed with breast cancer and was only given a 30

percent chance of survival. Since then, she has poured her energy into raising funds for her

cancer center, fighting her disease and completing her “mommy bucket list.” Her blog, The

Chronicles of Cancer, is read and respected in the worldwide cancer community.

“Kate was selected because of her insight and immediate outreach to address a community need,

while just beginning her own journey with breast cancer,” said Heidi Floyd, Pink Power Mom

Executive Director. “The network’s pay-it-forward award will empower Kate to continue her

wonderful mission.”

The Pink Power Mom award includes a $5000 donation to the winner’s charity of choice. Kate’s

donation will benefit the Women’s Cancer Research Center at Magee-Womens Research

Institute and the University of Pittsburgh Cancer Institute. The Women’s Cancer Research

Program is dedicated to reducing the incidence and death from women’s cancers across the

world. This mission is achieved through the development and fostering of vibrant basic,

translational and clinical research aimed at translating novel discoveries into improved patient

care.

"I am honored to be chosen as part of an elite group of women dedicated to breast cancer

research and support. I may have cancer, but it will never stop me from feverishly working on

raising funds to find a cure,” Kate Crawford said.

Crawford will be honored with all eight of the 2014 Pink Power Moms during the Pink &

Powerful weekend celebration in Atlanta, Ga., hosted by Kids II, in February of 2015.

Nominations to join the Pink Power Mom network begin on Mother’s Day every year. Selected

moms are announced every October, during Breast Cancer Awareness month. For more

information, visit pinkpowermom.org or KidsII.com

About the Kids II Foundation

The Kids II Foundation was established by Kids II in 2006 to advance the company’s

commitment and passion to making a difference in the communities in which employees work

and live.  Through partnerships with charitable organizations, volunteer efforts and donating toys

to children in need, the Kids II Foundation is able to make a profound and lasting positive impact

in the lives of children and their families.  The Kids II Foundation donates over a quarter of a

million dollars annually to charities worldwide, including Pink Power Mom – a non-profit

created by the Foundation to make a global change in the cancer community by rewarding moms

and breast cancer survivors making a difference.

About Kids II, Inc.

Kids II has a 40-year history of developing industry-changing innovations for families across the

globe and has quickly becoming a world-leading baby and infant product company. The brand

portfolio strength runs deep with seven brands under the Kids II umbrella: Bright StartsTM,

IngenuityTM, Comfort & HarmonyTM, DisneyTMBaby EinsteinTM, OballTM and TaggiesTM. Through

its brands, Kids II is a powerhouse of creativity, diversity and innovation, uniquely matching the

individual needs of every parent and baby. Headquartered in Atlanta, Kids II spans globally with

13 global offices in six continents serving customers in more than 72 countries.

Learn more about Kids II, like our Facebook page, or connect with us on LinkedIn.

###

Rostraver mom continues to set goals despite battle with cancer

Jim Ference | Trib Total Media

Kate Crawford gets a hug from her kids Stephen 4, Lily 6, and Grace 6, on Tuesday, October 14, 2014 as they look over pictures of a kick ball tournament that was held on her behalf.

By: Chris Buckley
Wednesday, Oct. 15, 2014, 12:56 a.m.

 

Kate Crawford's bucket list is filled with hopes and dreams, things she wants to accomplish in the time she has left with her family.

But her greatest dream is to find a cure for the cancer that has grown in her.

The Rostraver woman created her bucket list after being diagnosed last year with stage IV breast cancer.

“The bucket list is not necessarily for me,” Crawford said. “That's why I dubbed it the ‘Mommy Bucket List.'”

She and her husband, Stephen, have twin daughters, Grace and Lily, 6, and a son, Stephen, 4.

Last October, Crawford operated a lemonade stand at her home, raising $5,000 for the Magee-Womens Research Institute and Foundation and the UPMC CancerCenter.

“The little things most parents wouldn't think of are very important to me, like having a lemonade stand or seeing a child get an A on a test,” Crawford said.

“The things most people take for granted are my hopes and dreams.”

This year, her fundraising goal for the lemonade stand was $10,000.

The Kids II Foundation recently named Crawford a Pink Power Mom, one of eight women worldwide recognized for their efforts in breast cancer outreach and fundraising.

The award carries a $5,000 donation to the breast cancer association of Crawford's choice.

In February, Crawford will travel to Atlanta for the Kids II Foundation gala fundraiser.

“I'm looking forward to the gala and looking forward to being a mentor and growing with them,” Crawford said.

CRUSADE CONTINUES

Crawford hosted two other fundraisers this month.

On Oct. 3, a Paint and Sip event at Off the Wall Arts in Charleroi generated more than $2,500.

Last weekend, she sponsored a kickball tournament that raised nearly $2,000.

Ten teams played in the double-elimination tournament at the John DiVirgilio Sports Complex in Rostraver.

Township officials donated use of the field, and the Belle Vernon Youth Soccer Association donated use of the concession stand, including food.

By month's end, her efforts will have generated $25,000.

Diagnosed in January 2013, Crawford learned the severity of her cancer the following month.

Statistically, the median survival rate for stage IV breast cancer is two to three years, Crawford said.

“There is no cure for breast cancer, so helping to aid those efforts literally means saving my own life,” Crawford said.

Crawford has persevered despite many obstacles. She underwent active chemotherapy last year, but the doctors gave her a break in that treatment after her condition stabilized.

She now receives targeted chemotherapy every three weeks.

“It just keeps my cancer at bay,” Crawford said.

As the cancer spread to her spine and pelvis, Crawford had problems walking. So she undewent daily radiation therapy for two weeks. Radiation helps alleviate some pain by shrinking tumors, especially in her pelvis.

“Now I go weekly for physical therapy,” Crawford said. “Since starting physical therapy, I've been feeling great.”

Hair loss is often a side effect of chemotherapy.

Her hair has grown back, but “I would rather be told I have no cancer,” Crawford said.

POSITIVE OUTLOOK

“My kids and my husband are the ones who keep me going,” Crawford said.

The bucket list provides incentives.

“Every month, we work toward checking it off,” Crawford said. “I'm looking forward to being a (Pink Power) Mom and doing what I have to do to find a cure.”

The award solidifies Crawford's role as an inspiration to others.

“It makes me blush,” Crawford said. “I want to inspire people with my story. I want them to know that no matter how hard things get it will be OK,” Crawford said.

THE LIST REMAINS

In January, Crawford's son will undergo palate reconstruction involving the roof of his mouth. That will be followed by therapy to reteach him how to speak.

“No matter what happens, I know everything is going be OK,” Crawford said.

Some bucket list items were simple, others sentimental. She hoped to see her children attend a prom, which happened last year with the help of Belle Vernon Area School District officials. Some items are dreams, such as taking her family to New York for an extravagant vacation – or curing cancer.

“When I wrote up the bucket list, the whole Mommy Bucket List, I knew half of it was unattainable,” Crawford said. “They are dreams, but right now dreaming is pretty awesome to me.

“Even if I can't cure cancer in my lifetime, maybe my kids will look at that list and say, ‘This is something Mommy wanted' and complete them.”

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/6961840-74/crawford-cancer-list#ixzz3HjoCUhp6 
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The Revolving Cancer Door

The entrance to the hospital has an automatic revolving door. It has two sides and allows people in and out through two rather large openings. If someone would happen to not move fast enough, or touch the door while it is moving the door stops. People come in, people come out. Much like life; our lives move- allowing us to come in to new ventures and out with old ones. When we stumble, life can pause for a moment, allow us to pick up the pieces and then back in to the revolution we go. No matter if we are entering a new phase in our life, or leaving behind another, we must use the door. The revolving door for a terminal cancer patient, however, is unchanged. I can’t pause, I can’t get out, and I just keep circling; watching through the glass partition at everyone's lives on the other side that goes in and out.

I had a nice summer break, really no illnesses, crossed some things from my Mommy Bucket List, and even took a break from blogging and FB to enjoy my family more. Around the time that I was going between doctor’s opinions on whether or not to have a mastectomy, pain started in my hip and back again. What most people cannot comprehend is that for every ache, pain or slight change to my overall health, a thousand of my caretakers freak out, including myself. Is my pain cancer? Has the cancer spread? Will I go back on chemo? What if that chemo doesn’t work? Is this the end? Should I finish the plans for my funeral now? And with one achy hip you have yourself buried 6 feet under. It is impossible to not think worst case scenario when you already have cancer. You are on borrowed time. The average life span of a person with Stage IV breast cancer is 18-36 months. You always assume the worst. I am going on 20 months since I was diagnosed. I immediately thought my cancer had spread further in my hip and I knew what steps were next. First, you report it. Then they set you up with a bunch of scans. You get the scans. You go in to an emotional turmoil for the days following your scans. You think 24/7 about what those scans show. You check you’re online medical records for updates just about every minute. This is not like a cold that will go away. This isn’t a cold, this is cancer. Cancer that has already spread, and will spread further until it kills you- it’s only a matter of when. So every time you think its spread, you just can’t help but wonder- is this it?

I started the whole process, at one of my infusions, I reported my pain. Then I was ordered for 4 MRI’s of the area, after 2 immediate XRays. Then I waited. And went crazy. And waited. And planned my funeral. And waited some more. Finally the report came back and I met with my oncologist. Thankfully, the pain was not a spread of cancer, but cancer related nonetheless. The tumors in my pelvis are causing some serious tendinitis, straining my muscles. I have a compression fracture in my spine from the lesions in my vertebrae. It makes it quite hard to get around so I am going to be in to physical therapy 2-3 times a week for a couple months. We also found that my bone marrow seems pretty damaged (from chemo), and is probably what has been causing my abnormally low platelet levels. If my levels keep dropping then I will follow up with a Hematology Oncologist. So it wasn’t new metastases- will I do a happy dance? Absolutely not. Because I know, it’s cancer related. The cancer will spread further at some point, maybe it didn't today but one day, it will. I can’t move forward in life and I can’t just stop going for infusions. I am stuck. Everyone else around me moves on. Friends have babies, start new jobs, and go back to school, open a business- and I can’t do any of those. Cancer restricts me from that.

Then I noticed it. The revolving cancer door: Infusions. Scans. Repeat. Pain. Scan. Repeat. Infusions. Scans. Repeat. Pain. Scan. Repeat. Going round and round with no way to stop, no way to start something new, no way to leave. And I keep in this cycle until it stops. But when it stops for me, it won’t be so I can get out and move on, it will be because I can’t keep going anymore. It can be lonely and isolating. I watch the world pass by and pray that I, too, again someday can be worried by the mundane things of life without a care in the world. People forget. They forget I am in here all alone. They forget that I keep circling, so they hop out and move one. Such is life . . . everybody’s life. Except mine.

Now don’t get me wrong, in the stupid revolving door, many things won’t happen. My love won’t be incapacitated. My faith won’t be shattered. My hope won’t be forsaken. My strength will not be eradicated. And my soul will always be smiling.

I will live life for now, around my cancer. I will do me- I will love on my babies, my husband and my family. I will feverishly work to fund breast cancer research aimed to find a cure. I will go on in my revolving cancer door until I no longer can. And I will do so with the same courage I walked in here with.

The Cancer Isn’t Always Greener on the Other Side

After the meeting with the breast surgeon. I was feeling depleted. I never researched about women who present with metastatic breast cancer having a bi-lateral mastectomy. I guess naïve me just assumed that’s how the journey went. A vast majority of women with breast cancer receive some type of surgery, even ones who have a complete response to chemotherapy will have mastectomies. I didn’t have any reason to assume I was different. Until that meeting.

I don’t think the breast surgeon took in to account my mental well-being. I never was asked what I want. She saw studies, she saw numbers, but I don’t know that she saw me. She told me how she thought I would feel, not knowing that it wasn’t really my outlook. I had my mind made up since my diagnosis that this would happen. I never questioned it. Any time I had asked my oncologist about having the mastectomy, he never led me to believe otherwise. If I had been told at the beginning how controversial the surgery was, and that it just wasn’t for me, I would have never been so dead set on having it done. My oncologist told me once that he felt that I would have a better overall outcome as a result of having the surgery so I had set it as a goal. If I reached that goal, it meant I was essentially doing better. There was this obvious tension between my two doctors. They didn’t agree, and my breast surgeon didn’t try to sugarcoat any of that. She blatantly disliked his opinion and there was no room for compromise. Again, what she wasn’t understanding was that if having my breasts removed meant that I had a miniscule chance of living even a day longer, I was willing to do it. She just didn’t hear it, though. She just didn’t seem to get it.

 She had me sent for two additional tests, a breast MRI and a mammogram. She called me the day after and told me I still had a very small spot (6mm) of cancer in my right breast. The she said “You know, I read your blog”. I wasn’t quite sure what to think of that. Maybe she read of my pleas? Maybe she understood a patient’s perspective better after reading it? That didn’t appear to be the case. I never once heard “I understand where you are coming from. I understand why you want this done.” She only defended her actions, maintained her research and said she called my oncologist about my blog. I suddenly felt violated. As if my Mom had just read my diary and told my Dad on me. I was not pleased.

There is a physical aspect of cancer and a mental aspect of cancer. You can’t be in the profession of dealing with cancer patients and be narrow-minded. There isn’t only black and white. There’s a lot of grey. Emotions play a huge role in the life of a cancer patient. Only 30% of breast cancer patients are metastatic which puts them in to a completely different category than other staged patients. The cancer has already spread and we will die as a result of it, it is just a matter of when. Our lives revolve around trying to stay alive. It’s mental. Most patients that doctors deal with are just looking to get through their diagnosis; do what they have to do to get it over with and move on. We cannot. We will never move on. Cancer is intricately woven in to our daily lives for the rest of whatever time we have left. Do you think that because I already know my cancer has spread that this makes things easier or better for me? That the decisions I make should be effortlessly assured? Absolutely not. In fact, it makes every single choice ten-thousand times tougher. I know the cancer isn’t always greener on the other side. I know that the other side is physical pain and disfigurement. BUT, I would rather have a peace of mind; knowing that a secondary breast cancer will never occur in my breasts. I’ll take the pain over chemo and radiation any day of the week. Being on this side of cancer: the bad side, the “oh shit” side, the inescapably horrendous side of cancer, the side you think of twenty-four hours of every day, unequivocally sucks. Honestly, anything looks better than the emotional tolls that havoc my mind.

The whole saga put me in a pretty deep depression. I felt dismissed. I felt isolated. I felt alone. It was taking a toll on my family, too. One night my five year old cried the whole night over anything and everything. She begged me to not put her to bed, she wanted to sleep with me. When I told her no, she cried hysterically. I finally asked her why she was so upset about this and that’s when my heart broke in two.

“I never got to see you when I was in school. Now I’m outta school and you’re always at the doctor because of your cancer!”

I just want to live longer. This girl, she can’t live without me. She needs me. All my kids do. My son, he needs me to be there. They need my guidance, they need my discipline and most importantly, they need my love. If I have to trade in my breasts to do that . . . then so be it.




I met with my Oncologist last Thursday and reported that my liver and bone mets are still stable. That’s about all I can ask for: stability. I expressed my concerns over the consultation with the breast surgeon and I told him “I am not trying to be cured, I am just trying to live as long as I can”. To which he replied, “Well, I am trying to cure you, and if you want to have surgery, then why not?” He never has me convinced of what he knows and that is that there really isn’t any upstanding evidence to prove that a bi-lateral mastectomy on a metastatic patient will “make things worse” or not do anything at all. That fact remains that no one, no doctor in the universe, knows if the surgery will improve my overall prognosis because there isn’t enough supported research studies. He agreed that if I am at a higher risk of having a secondary breast cancer, then my breasts need removed. I finally heard “I understand where you and coming from. I understand why you want this done.” A giant sigh of relief hit me and a smile swept over my face.

The consensus is this: If this breast surgeon doesn’t want to do this surgery, then we search for one until we find one that will. Simple as that.

It’s My Body and I’ll Hack Off My Boobs if I Want To

Having metastatic breast cancer . . . presented at initial diagnosis . . .  at 30 . . . with a genetic mutation . . . is a few things:

1.    Rare.

2.    Unique.

3.   Difficult.

4.     Sucky.

Rare: to be diagnosed with breast cancer under 40 accounts for only 7% of the population with breast cancer. Unique: About 6-10% of patients are Stage IV (Metastatic) at their initial diagnosis. Difficult: It can difficult to treat and manage metastatic disease and the median survival rate is 2-4 years and even lower for women under 40. Sucky: I am this huge ball of rarities that no one really seems to know what to do with. I don’t fit in to the “norm” metastatic breast cancer group, young cancer group or breast cancer group. It is very isolating and frustrating.

After I met with the breast surgeon on Thursday I felt defeated and worn. I have been in this journey for 18 months. I am coming upon the average survival rate ranges for women my age. It has left me feel very anxious most days. I have prepared myself for 18 months to have a double mastectomy. Ever since the primary tumors in both of my breasts no longer showed up on the CT scans I was told by my oncologist that after a few stable (no new lesions/progression) scans that I could have a double mastectomy.

See, here’s where the gleaming bag of rarities comes in. Since I was initially diagnosed Stage IV, I was never offered a double mastectomy to begin with because I needed to start chemotherapy right away. We needed to reduce and try to stop the progression of my cancer. Simply removing my breasts would not work. The other 90-94% of breast cancer patients who are Stage IV, more than likely already had some type of surgery. They had been treated for breast cancer prior to their Stage IV diagnosis. It was hard to “fit in” with them. Not having gone through that part of breast cancer made me feel as if I was the new kid with glasses in a 3rd grade class. I looked at the double mastectomy as a goal I worked towards. Fun goal, huh? In my mind, reaching this goal meant that I was doing well.

“Why?” seemed to be the question of the day with my breast surgeon. Why give a woman whose disease has already spread a double mastectomy? She was very against me having a double mastectomy. She in no way agreed with my oncologist, even laughing at the research he quoted to me. She was very thorough and explained her own research stating that in another country there was a study conducted with women with metastatic breast cancer. The trial had some women receive a bilateral mastectomy and women who did not and they followed their progress for about 2 years. The research claimed to have shown absolutely no benefit to having surgery. She told me the surgery would not benefit my quality of life. All I heard from that was “You are going to die anyway, so what’s the point”. I was not worth the surgery. She explained the risks involved in the extensive surgery trying to almost scare me out of it.

Besides a couple of the very selfish reasons I listed above, I also have some very reasonable rational. When you are diagnosed with Li-Fraumeni Syndrome it is suggested that a woman with breast cancer not only has the breast with cancer removed but that she also has the other “healthy” breast removed. The instance of having a cancer return or developing a secondary cancer is very high for me. This would eliminate the chance of having cancer return to my breasts. Secondly, while it is controversial, there is research that suggests a woman with metastatic breast cancer that has a double mastectomy can improve her prognosis by as much as 2 years. Although, according to the breast surgeon, that study is wrong.

Lastly, and most importantly, when I started this journey I made myself a little promise. See, when our angel, Shannon, was born we didn't know she also had a congenital heart defect. The neonatal cardiologist met with myself and Steve and told us that she only had a 1% chance of surviving surgery. We made the hardest decision of our lives by removing her from life support. The “what ifs” have plagued me, and I always wondered “What if she was that 2%”, “What if she had made it through surgery and lived”. I felt as if I gave up, I let her die without knowing if she would have made it through surgery. I vowed to never do that again. I promised myself when I was diagnosed that I would fight, no matter how small the percentage, no matter how slim the statistic. If this surgery could possibly extend my life, even if it was by 1 day- I would do it.

Even with all of the reasons I gave, she still is against me having a double mastectomy. Ultimately, (she said about 10 times) it is my decision.

I thought I was going to break down in the office. I was so upset. I felt officially defeated by this stupid cancer. I was so confused by the disagreement between the two doctors. It just didn't make sense. If someone told me at the beginning that surgery would never be in my cards- so be it, I would have accepted that. But I have been told for months not only could I have it done, but that it would potentially improve my prognosis.

After researching the buh-jeebezes out of everything she told me, I will say she still doesn't have me convinced that it won’t help my overall prognosis. Apparently, a bi-lateral mastectomy in a metastatic breast cancer patient is very controversial. Some research says it benefits the patients, some says it doesn't. There are only a handful of studies conducted regarding this subject so it is very hard to say whether is actually extends life or not. I decided to ask some other women who are also Stage IV to see if there is/was anyone in a similar situation to mine. Not too many. One woman with Stage IV breast cancer actually sent me a message telling me to stop worrying about my breasts and worry about saving my life. Another told me that the surgery is not something I should take lightly. And one even suggested I am not undersdtanding the toll it will take on me. Really?! I am trying to save my life! I know the risks involved. I know what a traumatic surgery this will be, emotionally and physically. I would not voluntarily get my boobs hacked off for the hell of it. I feel that this I something that must be done to live a longer, fuller life with my family. Do you really think I care if I have boobs or not? Um, no. To say I was surprised by some of the responses is putting it lightly. Most of the women were very supportive of the “It’s my body and I’ll do what I want” approach and suggested me getting a second opinion.

The surgeon ordered me to have a breast MRI and mammogram. She wants to see if there is any evidence of cancer in my breasts that other scans might not show (she isn't convinced that the CT scan is very accurate). She wants to present my case to the other breast surgeons and oncologists at the hospital’s weekly conference. This would be a second opinion of sorts. That will be the determining factors of whether or not I will have the surgery. If that isn't stressful enough, I also have my quarterly scans. This time it’s my CT scan and bone scan. Scans = Scaniexty. More anxiety . . . yay.

It’s just so completely frustrating. I just want a shot at living longer with my family. Is that too much to ask?

I Didn't Know You Were a Doctor!

Ever since my diagnosis in January of 2013, I have been given tons of unsolicited medical advice on what cures cancer. Everyone I knew, and even didn't know, turned in to highly educated medical oncologists. Any herb, supplement, fruit and illegal substance has hounded its way in to my news feed or Facebook page. Everyone knew someone, who knew someone, who knew someone who was cured of cancer by smoking or ingesting cannabis. Which, is a fancy name for the very illegal substance marijuana (married to a cop here, folks!).  A sister of an acquaintance was cured of cancer by sprinkling turmeric on her food. I should eat the fruit of the tree on the tallest mountain, that sits next to the purple primrose on a Saturday evening at approximately 8:02 while standing East on my head in a country I cannot even pronounce because if I didn't know, that cures cancer. And there’s the ever popular “cancer foods” that I should eat which prevent cancer. Prevent? I think we are a little late for that. And my ever favorite- of course, the pharmaceutical companies do not want me to know any of this. It's a big conspiracy. 

 I wasn't aware of your medical degree! I didn't know you spent roughly 14+ years working on your doctorate specializing in oncology. I mean let’s break it down, shall we.

You did all this:

-Finished Pre-med or obtained your Bachelor degree which takes approximately 4 years 
-Went to medical school which averages 3-4 years 
-Enrolled in a Residency program for 3 years
-Then took a couple months to study for your Board to qualify for fellowship 
-THEN worked on your fellowship for 2-3 years focusing on oncology 
- And finally completed your Board examination in Oncology which can take about 6 months

Congratulations, Doctor! And in the meantime, you ran clinical trials on your cancer curing hoopla, which can take years to get to human trials and YEARS in human trials before becoming approved.

Um, hello, I have cancer. I am pretttttyyy sure if there was a cure, I would know it before you or your sister, brother, aunt, great uncle or second cousin would. And not that I am a doctor, but I got me one of those. A specially skilled, highly educated, CHIEF of Oncology at my hospital. He’s the big cheese. I think he would be greatly offended if he didn't know there was a cure for cancer before the rest of the civilian population.

There is no cure for cancer, I don’t care what anyone says. I don’t care what you read and I sure as shit don’t care what your momma told ya! Please, read this carefully: Every single cancer cell in each person’s body is absolutely unique. There are no two people with the same kind of cancer cells in their body. Each person reacts differently to the drugs they use to treat cancer. Because, that’s all they do- treat it, they do not cure it. Sometimes the cancer cells react accordingly to a drug and diminish with no metastasizes, which is great- however, a person with similar type of cancer could react completely differently and end up with metastasizes. There are a gazillion environmental factors to add in, genetics and so on and so forth. I can tell you of many vegans, vegetarians, HEALTHY women you have died from breast cancer. Even if one person was “cured” from the fruit of a Zabillybonbon tree that does not mean it will work for the next thousand people in line after them. Because, let’s say it together, everyone’s cancer is different!

Am I being a smart ass? Yeah, I am. I don’t mean to sound harsh, but have you ever heard of the saying “If you can’t say something nice, don’t say anything at all”? The same applies to this situation. If you yourself, have never been diagnosed with cancer, have never been through chemotherapy, the emotional tolls, side effects of radiation, the surgeries, the appointments, the heartache, the financial burdens- then you are not qualified to offer any unwelcomed medical advice to someone with cancer. How can you possibly know what it’s like unless you have been through it yourself? I know, I know, you’re just trying to be nice, and I get that, I really do; but seriously, if you don’t think I don’t know of, I don’t wish for- I don’t dream of a cure, you’re insane, because I think about it every second of every day of my life. It’s my reality. Not yours. If you want to do something nice for me, offer to cook a meal for my family during my upcoming double mastectomy, offer to help with the kids, drive me to an appointment, clean my house, offer anything other than medical advice.

Bad Days Happen

I have bad days. I have good days, too. I embrace both. They keep me grounded. I do not suppress my feelings of hopelessness, despair and desperation. I drown in those feelings from time to time but never let them consume my spirit. The allow me to do one thing: remember that in the sorrow, I will find hope, faith and love.

It hasn't been easy since I had radiation. The month of April alone I traveled over 445 miles to doctors’ appointments. And yes, you read that right four hundred and forty-five miles in less than a month. The effects of radiation were worse than chemo and what’s life without a little drama mixed in from friends or family? It was tough. I finally started feeling better this past week. The radiation did wonders to my pelvic pain and I barely have any now.  The damage to my bowel and whatever nasty stomach issue I was having seemed to have worn off. I am still a little leery about the whole “feeling better thing” because it never usually lasts long. I am taking it easy for now. I haven’t been eating super healthy as I am not supposed to be eating too much fruits and veggies because of the bowel damage and since I haven’t been well enough to exercise I get pretty worn out when I try.

I have been having a lot of anxiety about my upcoming appointment with the breast surgeon. A huge part of me does not want to have a double mastectomy. They are my breasts. Breasts are not supposed to be hacked off of your body. I know it sounds selfish but I just don’t want to get surgery. I just don’t. I don’t want to have disfigured breasts. I don’t want to be in pain. I don’t want to feel awkward anymore. Then again, I don’t want cancer anymore either . . .

I still am not sure exactly what type of surgery I will have. I thought I was dead set on having a TRAM Flap reconstruction done, which uses your belly tissue and muscles for a more realistic feel, but now I don’t know if I would be eligible for that surgery. I have a rather large vertical keloid on my stomach from having SJ and don’t think the tissue is very usable. The silicone implants wouldn't bother me but I keep reading how painful the expanders they put in to stretch your tissue are. Pain terrifies me anymore. I am a big baby . . . never used to be though.

And trust me, this is no boob job or tummy tuck. If you’d like to see pictures of how great you think this surgery will turn out, please, Google double mastectomy reconstruction. It’s not pretty.

I’ll continue to have bad days, such is the life of a metastatic breast cancer patient, but I won’t let them conquer my love for life and my family. I have to forge through to have the best days of my life.

Wherever You Are

I have had this feeling of impending doom. Seems morbid, I know. I can’t really explain it. I am just waiting for the other shoe to drop, I guess. All around me lately is other women, some younger than me, dying. Taken too soon by metastatic breast cancer. It’s crazy when I really think about the time I have left here on Earth, because frankly, when you have terminal cancer- ya can’t help but think about it sometimes. If I’m lucky, I’ll live 20 years with this disease, but I will only be 50. I will get to see many things that the kids accomplish like graduating high school, and going off to college but I will miss their budding future. Chances are I will never see one of my grandchildren and more often now it hurts my heart to see grandparents interact with their grandchildren because I know it will more than likely never be me. As this wretched cancer would have it, I estimate I have 5-10 years left. There’s just too much in my bones, it will spread further at some point. It’s just so hard to see a future that has me in it.

Part of this ominous perception is in part due to my overall current health. I am sick. And I am so sick of being sick. Every day I am nauseated to the point of being drove in to my bed, unable to move for hours. I feel like I have a rock of acid in my stomach and it hurts so bad that it brings me to tears. I have diarrhea 7-10 times a day every other day, no matter what I eat or don’t eat. And if I am not going to the bathroom, I feel like vomiting. I thought to myself the other day, “This must be what the end feels like”. It’s no way to live. Tis' the life of a metastatic breast cancer patient: ups and downs, happy and sad, sick and not. 

It was the worst on Mother’s Day. Of all days for it to happen, a day I want to bathe in the love of my family- it had to happen that day. I spent most of the day sleeping and in bed. Steve had to put the kids to bed and Stephen fought him so hard. He cried and cried for me. “But we have to sing our song” he cried. And then I heard what would break my heart in two; my 4 year old son singing our song by himself. “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” We sing this together every night because I know one day I wouldn't be able to sing it and I want him to have that memory . . . always.

It’s as if I am prepping my children, subconsciously, for life without me. Because one day the time will come but I don’t want them to be sad. I want them to remember how much love I had and always will have for them; and that nothing even death can take away my love. 

I wanted you more than you ever will know

So I sent love to follow wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself!

So climb any mountain...climb up to the sky!

My love will find you. My love can fly!

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

It never gets lost, never fades, never ends...

if you're working...or playing...or sitting with friends.

You can dance 'til you're dizzy... paint 'til you're blue...

There's no place, not one, that my love can't find you.

And if someday you're lonely, or someday you're sad, 

or you strike out at baseball, or think you've been bad...

Just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

In the green of the grass...in the smell of the sea...

in the clouds floating by...at the top of a tree...

in the sound crickets make at the end of the day...

"You are loved. You are loved. You are loved," they all say.

My love is so high, and so wide and so deep,

it's always right there, even when you're asleep.

So hold your head high and don't be afraid

to march to the front of your own parade.

If you're still my small babe or you're all the way grown,

my promise to you is you're never alone.  

You are my angel, my darling, 

my star...and my love will find you, 

wherever you are.

~ Nancy Tillman

Being Alive vs. Living

I originally posted this on CureDiva April 20, 2014

There is a difference between being alive and actually living. It was a difference that took a Stage IV diagnosis of breast cancer for me to understand.

I was busy with the mundane activities of life. I was a 28 year old stay at home mother to a set of 4 year old twins in preschool and a 2 year old with special needs. My special needs miracle was my son, SJ, who was born nearly 8 weeks premature and suffered from complications of his prematurity since birth. We went twice a day, every day during the week to some sort of therapy session or medical appointment of his. It was tiring work taking care of him. When I came home I still had to be a mother to two other young ones and also be a wife. I ran a nonprofit organization that I co-founded and spent many of my nights up until 3 or 4am trying to get work accomplished. I said “No” a lot to the kids; I was always too busy doing some sort of project to play. Dragging my son out of our minivan kicking and screaming because he didn’t want to keep going to therapy sessions took its toll on me mentally and physically. My back seemed to spasm every week which left me in excoriating pain. Sure we did fun stuff, but not often. I always had a full schedule. I didn't think life could get much more complicated.

That was until I felt the mass in my breast. I got the devastating news that I had breast cancer just days before I turned 29. Preliminary reports came back as HER2 positive, grade 3, IDC and DCIS; but my staging would change after my initial scans later that week. I’ll never forget when the doctor came in the room and told me that the cancer was found all throughout my body and that I was facing a Stage IV terminal diagnosis. I just sobbed hysterically and asked if I was going to die. The best answer she could offer was “We are going to try and not let that happen”.

I had mets to my liver, both breasts, lymph nodes, shoulder, ribs, thoracic and lumbar spine and down through my pelvis. It did not guarantee me a great prognosis. It is estimated that a mere 16% of young women with Metastatic Breast Cancer live past 5 years from their original diagnosis date. I was given a less than 5% chance of ever being cured. My immediate thoughts were of my children. What if I die? What if I leave them? What if they miss me? What if they don’t miss me? I won’t see them graduate, get married or have kids. My mind contemplated all of the things I have never done and all the things I will never do with my children. It was in that moment that I decided something. I would not let cancer be my death sentence. Rather it would be a living sentence; an opportunity to live my life to the fullest despite my own mortality shoved in my face. Living life is an occasion many take advantage of, including myself. I vowed I would never do that again.

No matter how much I tried to plan, schedule and manage my life prior to my diagnosis; cancer and everything associated with it was unexpected and I had to learn how to roll with it. In return, I created a list of things I would try harder to do or not to do in order to fully love living my life with or without cancer.

I say “yes” more often.
I complain a whole heck of a lot less.
I pay it forward every chance I get.
I am spontaneous.
I let go.
I ain’t got time to be glued to devices or screens. (No fancy phone and no personal FB account for me anymore!)
The world can wait on me because my family is my world.
Every Friday is Game and Movie night.
I slowed down. I barely ever say “Hurry up” or “We’re gonna be late” any more.
I smile and I smile often.
Laughter is one the best medicines and I surround myself with all things funny.
I appreciate the little things and smell the flowers more.
I inundate myself with only positive people. I don’t have time to be negative.
I compliment strangers.
I dance and sing like no one’s watching.
I soak up the sun.
I am better at being patient.
I am hopeful.
I am faithful.

And most importantly I love. I love so much now that it hurts.

I can’t say that I am thankful for cancer, because I am not. I can say that my cancer has blessed me. It has opened my eyes and made me live my life the way we were intended to live life. Without cancer, I don’t think I would have ever realized what a big difference there was between being alive and really living my life.