Tuesday, January 27, 2015

Keeping My Eyes Above the Waves



It’s been a crazy past two months. Steve had his surgery in late November and did great. It was really nice having him home for the holidays. I spent the month of December focusing a lot on the kids. Stephen turned 5 and we had a big party for him. Followed it with tons of Christmas activities and prepping. We had a superbly blessed Christmas. I was in awe over the twinkle in each of my children’s eyes for the magic the time of year brings. Everything was made good again. My marriage and motherhood seemed stronger than it has been in years. 

January brings up many emotions for me. Not only was Stephen scheduled for surgery but I had my first mammogram and breast ultrasound in January- my biopsy, my diagnosis; it’s also the birthday of a daughter who is no longerwith me, and her “angelversary”, along with memories of her funeral and burial . . . oh,  and it’s mine and Steve’s birthday. That’s a whole lotta crap to deal with in one month.

Stephen’s surgery went great. He was hospitalized for a couple days and discharged home. He healed up quick and has been doing great after his liquid-only diet. He is now on soft foods now and can have solids again in a month. We have been very busy with genetic appointments and follow up appointments with him. He has many tests and more appointments in the spring.

I had my scans at the beginning of the month as well. Everything was stable- no regression and no progression. I do have some gallstones, which could be drug induced, and may need my gallbladder out if I have another attack. The compression fracture in my back is possibly pinching a nerve down to my foot and makes it hard to walk. I am loading up on more medication to help with that. Since putting me back on chemo wouldn’t really do much of anything, I am still able to continue my break from chemo- it’s been one year and I love it. I go every couple weeks for my maintenance infusions, which help keeps my cancer at bay. I still deal with the perfuse swelling of my optic nerve as well and will follow up with that doc soon. I am going to be getting another port and have been working with the dermatologist to help rid my body of any staph that may have been lingering after my repeated infections. I feel okay though. I definitely am still not how I used to be, but, I am slowing accepting the fact that I won’t ever be that go-get-it person again.

It’s been 2 years since I was diagnosed. The average survival rate for a woman my age with advanced breast cancer is 18-24 months, and a less than 15% chance of surviving 5 years. I am officially on borrowed time. I am happy to be around another year and yet absolutely scared shitless to see what the next year may bring.

I’ve been asked before if I am “over” different things. Am I “over” the death of my daughter, “over my diagnosis”, am I moving on from grief and cancer? Honestly, no, I am not over or moving on from anything. I am living through it. I have been living through it since she died and since I was diagnosed. There’s no other way. 11 other months out of the year I am fine. I can do okay; my grief isn’t raw, it doesn’t consume me, but it still lives within me. And when January comes, I cannot help but suffer through those moments all over again. January makes me question so much. I cannot understand why I was chosen to walk this path.

It comes down to one thing: trust. Do I trust in God enough to know that all things will work out for the good? Can I trust that I don’t have to worry, just pray? I won’t lie, when the ocean’s rise, it’s hard for me to keep my eyes above the waves and focus on Christ. But the minute I take my eyes off of Him, I sink. I try though, I try so hard. I get so shaken, and I feel so worn. I try to make sense of it all. There has to be a reason, after all. At least that’s what everyone always tells me. There’s a reason it happened, and only the Lord knows; but I want to know why. I can hear Him telling me to just trust and not rely on my understanding; to stop trying to figure out the chaos. He reminds me I have strong roots, the waves and wind won’t break me. Sometimes I hear loud and clear, and it’s a great feeling, but sometimes I can’t help but doubt the plans. And you wouldn’t know what that’s like unless you have walked in my shoes and have experienced these kinds of tragedies. You have no idea how I pray for peace so that my faith doesn’t have to suffer or have an ounce of doubt. It’s so damned hard some days . . .

I turn 31 today. I’m here another year. I am extremely thankful to be here still. My next year I plan on fixing my eyes on my relationship with Christ, loving on my hubby, spoiling my babies and crossing some things from my mommy bucketlist. I won't get over anything, I'll continue working through it.

Monday, December 1, 2014

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.”

Monday, November 17, 2014

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.




Tuesday, November 11, 2014

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.

###

Friday, October 31, 2014

Rostraver mom continues to set goals despite battle with cancer

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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Sunday, September 21, 2014

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.



Friday, July 11, 2014

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 na├»ve 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.