Happy Birthday Jessie!

Just a few months ago Jessie was a happy, healthy 10 year old girl. An honors student who loved swimming, playing volleyball, riding her bike, making jewelry, playing the flute, spending time with her friends and family, and going to movies at the drive-in theater.

Over Memorial Day weekend, Jessie started having back pain that continued into the week. Two doctors visits were inconclusive, but nothing serious was suspected. They thought it was either a urinary tract infection or possibly a kidney stone. A little over a week after her symptoms began, Jessie was in extreme pain and her parents took her to the emergency room. She was sent home with some pain medicine to go with her antibiotics and was scheduled for an ultrasound the next day, but that seemed like more of a formality.  

Unfortunately, it was not a formality. The ultrasound revealed a mass on her left kidney and 24 hours later Jessie was at a children's hospital preparing for exploratory surgery and biopsy. This surgery revealed that the tumor was unusual and wrapped around lymph nodes which would make removal dangerous. Testing of the tissue from the biopsy revealed that she had a variance of a Wilms tumor, a rare form of kidney cancer in children. She would require 6 weeks of chemotherapy, then surgery to remove her kidney and surrounding tumor, followed by 24 additional weeks of chemotherapy in addition to radiation treatments to get any remaining cancer cells.

Jessie started chemotherapy immediately and had successful surgery on July 30th to remove her kidney, the tumor, and lymph nodes. She re-starts her chemotherapy today. The chemotherapy has caused her hair to fall out and she has required red blood cells because her levels were too low. Jessie got some new hats, a synthetic wig, and was recently measured for her real wig to deal with the hair loss. 

All of this would be a lot for anyone to handle, especially a 10 year old girl, but Jessie has shown that bravery and strength are not determined by age or size. She has been strong since day one, often more concerned about how her cancer is effecting her family than herself. She even makes jokes about going bald. 

Jessie's prognosis is good, but she still faces a daunting 8 months of treatment. She won't be able to go back to school with her 6th grade class this fall or do many of the things she loved to do. She tires easily and her immune system will be weakened from her treatments. Yet, based on how Jessie has handled the first part of her battle, I have no doubt that she will not let this get her down and will come out of this stronger than before!

No child should have to spend her 11th birthday starting a new regimen of chemotherapy, but since that is the reality for Jessie, please join me in wishing a very happy birthday to a very special girl!

Jen, Part 1

2 months before diagnosis

In early October of 2008, Jen was a 30 year-old new mom to a healthy 4 month-old baby boy. Motherhood was particularly sweet for Jen because she had battled with infertility for several years and her son was born 7 weeks early, which was an emotional roller coaster. Things had finally calmed down, until she found a lump while breastfeeding one night. Jen was not overly concerned, but called her doctor who said it was likely just a clogged milk duct, but had her come in as a precaution.

Upon examining Jen, her doctor sent her to get a mammogram. Based on the initial reading of her mammogram, the radiologist asked her to stay for a biopsy and 2 days later she was diagnosed with breast cancer (invasive poorly differentiated carcinoma of the left breast, Grade 3). This was an aggressive cancer made more aggressive by Jen’s more active hormones because of her young age.

The week following her diagnosis, Jen underwent a barrage of tests including blood work, MRIs, an x-ray, and sonograms to learn more about her cancer as well as checking lymph nodes to see if the cancer had spread. These tests showed another mass in her right breast, but thankfully it came back benign. Several lymph nodes looked suspicious and would need to be studied further. Jen would likely need surgery and chemotherapy and/or radiation.

The doctors felt confident that they had caught the cancer early, so Jen had several options for surgery: partial mastectomy, lumpectomy, or double mastectomy. Her surgeon recommended the double mastectomy and chemotherapy. This was very difficult for Jen to hear. The surgery meant losing a part of her identity and the idea of chemotherapy terrified her. Yet, all of Jen’s concerns were overridden by thoughts of her son. She said,

“All I could think about was my 4 month old son growing up without a mom. And at that point, I knew I had to fight. If not for myself, for him. I asked my son to fight for his life when he was born 7 weeks prematurely. Now it was my turn.”

Home after surgery with drains

Jen went in for surgery 3 weeks after her diagnosis. In addition to removing her breast tissue, the surgeon also removed 5 lymph nodes, all of which came back negative for cancer. Overall, the surgery was considered a big success. Jen would now need to recover before starting chemotherapy and the reconstruction process. During this time, Jen learned that she had tested positive for the BRCA 2 gene mutation, which confirmed her decision to have the double mastectomy, because this mutation drastically increased the risk of reoccurrence. Unfortunately, this also meant that her chemotherapy would need to be stronger and longer.

First chemo treatment

Jen started chemotherapy 10 weeks after her surgery. Her first treatment was anything but normal. She felt fine during and immediately after, but had a severe allergic reaction several hours after treatment. She does not remember much, but was told that she had an anxiety attack where she was pulling her hair, trying to claw her face and pounding her fists on the bed. It took 2 morphine shots to calm her down! Luckily, the rest of her chemo treatments went more smoothly, although she did suffer from numerous side effects like nausea and fatigue after each treatment, which got progressively worse with each treatment.

Shaving her head

One of the most difficult parts of chemotherapy was losing her hair. This would make her battle with cancer public. Everyone would now know she was fighting cancer by looking at her. Yet, she decided to take control of the situation. Instead of waiting for all of her hair to fall out, she had her hairstylist shave it off. She had a wig, but never was quite comfortable in it. She decided to use scarves instead and came to love them. At the time she said, “I can shower and get out the door in 20 minutes! Plus, I never have a bad hair day, I don't care when it rains and I'm saving a ton of money on hair products/haircuts!”

Sassy scarf

Seven months after her diagnosis, Jen was able to get her chemotherapy port removed, which was a big relief. Nine months after her diagnosis she had her ovaries removed, which proved to be more intense than she had expected, but still another relief to know that she was reaching the end of her battle against the BRCA gene mutation. Jen has now been cancer-free for 3.5 years!

Jen with her mentor at a survivor's walk

Jen believes she survived this experience by relying on her faith and not dwelling on what she was going through. Jen had a huge support network of family, friends, and coworkers that also played a major role in her recovery. She connected with another woman who had been through a similar battle and she became Jen’s mentor and guardian angel. Her best advice was to follow a '10 minute day' plan where you take each day 10 minutes at a time and not worry about the rest.

Jen has been very open about sharing her story in hopes of helping others. She kept a blog during her treatment that had 400 followers. She was also interviewed by the local news and was featured in several television and radio ads aimed at raising awareness of breast cancer. Eventually, she would like to right a book targeted at young breast cancer patients. (I hope she does!) During her fight, she found that there weren’t many resources for those under the age of 40.

Jen and her son today

Jen’s story is another example of the importance of being proactive. Jen’s mom had been diagnosed with breast cancer 2 years prior, but at that time Jen’s doctor said that meant she would need to start getting mammograms at age 35.  She never expected to be diagnosed at 30, but thank goodness she contacted the doctor at the first sign of something abnormal!

Rachel gives the gift of life

In November of 2009, Rachel joined the National Bone Marrow Donor Registry through a drive initiated by a co-worker whose cousin died from a blood cancer. Joining the registry was easy and simply required some paperwork and a few cotton swab samples collected by swiping the inside of her cheek. No big deal!

Two years later, Rachel was notified that she was a potential match for a patient. Rachel completed a comprehensive medical survey and talked to a medical case manager about her medical history. In mid-November of 2011, Rachel found out that she was the best match for the patient and the donation was scheduled for January 26, 2012. She learned that the recipient was a 62-year old man with lymphoblastic leukemia.

Five days before her donation date, Rachel began receiving injections of Filgastrim, a drug that causes your own bone marrow to super produce and release into your blood stream. Since her recipient was very ill, they would need to get as much marrow from her as possible. This drug caused some mild aches and pains, but nothing a little Aleve couldn’t handle.

On her first donation day, Rachel was hooked up with a needle in each arm and a marrow collecting machine in the middle. She found it to be somewhat similar to donating blood, except that you are hooked up for several hours at a time. She was not able to move her arms or walk around for several hours, which did get uncomfortable. Because she could not move, she had to use a bed pan, which was less than glamorous, but having given birth to two children, it didn’t really bother her. :) It was the same set up for the second day of donation, but for less time. At the end of process she was able to see her marrow, which she describes as “a bag full of goopy pinkish white stuff.” 

All in all Rachel found it to be an easy process. “The National Bone Marrow Donor Registry is amazing. I can't say enough good things about "Be the Match"...they were so wonderful, answered all of my questions and covered every expense (mileage, parking, meals, etc...) associated with the donation process. They made the whole process super easy and comfortable.”

Six weeks after her donation she learned that the transfer went well and the recipient was able to go home to recover after a few weeks in the hospital. Rachel will receive another update at the 6-month anniversary of her donation and is hoping for more good news!

It is important to note that Rachel is no stranger to cancer. She was diagnosed with early stage cervical cancer in 2006, which was treated with surgery. Rachel’s bone marrow donation is an inspirational example of “paying it forward”!

To learn more about becoming a donor, please join the National Bone Marrow Donor Registry! 

Courtney's story

In May of 2009, Courtney went to her doctor for a routine visit and happened to mention two moles she thought may be suspicious. The doctor didn’t think they were anything, but removed them anyways. A few weeks later, at the age of 26, she was told she had Melanoma. The first thing Courtney said was, "This is my fault.  I spent too much time in the sun and tanning beds." The doctor reassured her that it was not her fault, which helped to relieve her guilt.

Courtney’s past experience with cancer was not good. Three of her grandparents died of cancer, although none of them had Melanoma.  She was terrified and feared the worst. Even though the cancer had been caught very early, she worried that it could come back at a more advanced stage later in life.

She met with a plastic surgeon the day following her diagnosis. He told her that he would need to cut down to the muscle to make sure everything was completely removed, but since both moles were in the same general area, he would be able to do it with one large incision. Her surgery was scheduled for 2 days later.  While she was glad that everything was moving quickly, it also reminded her of the seriousness of her diagnosis.

After a sleepless night she arrived at the hospital at 5:30 a.m. on the day of surgery. One of the pre-surgery steps was a cancer-dye test, which allows the doctors to see how the dye goes through the lymph nodes and better understand where the cancer has spread when a biopsy is being performed. Courtney describes this as, “quite possibly one of the worst things I have ever experienced in my life.”

Luckily, the surgery went well and it was determined that all of the cancer had been removed. She was relieved, but since she had a lot of moles on her body the concern never fully went away. About six months after her surgery she had 2 more moles removed that came back suspicious, so the doctor wanted more tissue to be removed to make sure it wasn’t more cancer. Luckily, this could be done under local anesthesia and everything came back ok.

The same thing happened a few months later and Courtney decided she could not keep going through this. The surgeon agreed to remove 20 moles, which meant another surgery, but this time Courtney was not as scared because she knew this would relieve a lot of concern and allow her to take control of her health. The surgery was a success and everything came back clear. Yet, Courtney’s fight against melanoma was not over. She had another scare with a swollen lymph node which required surgical removal, but luckily no more cancer.

It took Courtney awhile to recover emotionally from her diagnosis. She knows this is something she will have to deal with the rest of her life, but also knows she was very lucky to have caught it so early. She sees her oncologist and dermatologist every 3 months and her surgeon once a year. While all of these appointments can get a bit annoying, she knows she is in good hands and is being proactive about her health. She is also thankful for the support of her now-husband and parents through the entire process.

Wearing her trusty sun hat

She is more careful than ever about sun exposure and encourages others to be careful too. Additionally, she urges everyone to trust their instincts and be persistent if they think something is wrong. Her advice to others: “The next time you are working on your tan, put on a hat and an extra layer of sunscreen.  Would you rather have pale skin or lots of scars?  Well, I have both.”

May is Melanoma Awareness Month. To learn more visit the Skin Cancer Foundation.

Dawn's story

When she was 32 years old, Dawn went to the doctor because she had been having some spotting between periods and a painful urgency to go to the bathroom. In hindsight she also had no appetite, would get full very quickly after eating a small amount and was lacking energy. Her doctor thought she had an ectopic pregnancy, but 5 pregnancy tests disproved her suspicion. Dawn was sent for an ultrasound and received a call at work the next day saying she had had two masses on her ovaries, one of which was quite large and complex. She was sent to see a gynecologist who was confident the mass was malignant and said Dawn would need immediate surgery and possibly a complete hysterectomy. Because of the seriousness of the diagnosis, Dawn wanted to get a second opinion. Unfortunately, because she had an HMO, she had to go through a lengthy process of changing primary care doctors and getting referrals. The waiting was incredibly stressful.

Luckily, the wait was worth it and Dawn was very happy with her new doctors. Her new gynecological oncologist said that her tumor could be benign, malignant or borderline. She went into surgery expecting to have a complete hysterectomy. While the doctors hoped to save her fertility, they made it clear that their first goal was to save her life. The surgery showed that she had a borderline tumor, which is essentially stage 1A ovarian cancer that was contained to one ovary and had not metastasized. The surgeons removed a 10cm tumor as well as her left ovary and fallopian tube.

The whole process was difficult for Dawn. In additional to the emotional toll of a cancer diagnosis, she had a severe allergic reaction to her painkillers after surgery. The picture to the right shows her broken out in an itchy, burning rash. She took the picture of herself to remind herself that she would hopefully never feel that awful again. Even after her body had recovered, Dawn struggled with the fertility issues that came along with her diagnosis. She was forced to ask herself several difficult questions like, what if I can't have children? What if it's too dangerous to have children? Am I passing on a genetic disaster to my hypothetical children? These are issues Dawn continues to deal with 5 years later.

Dawn knows she dodged a bullet and says that, “Not a day goes by that I don't realize how insanely lucky I was that this wasn't worse than it was.” Yet, her fight is not yet over. To reduce the risk of reoccurrence, eventually Dawn will likely have a complete hysterectomy and removal of her remaining ovary. In the meantime, she has annual ultrasounds and exams to check for any new tumor or cystic growths and needs to be on oral contraceptives to prevent further tumor growth and will only go off of the pill if trying to get pregnant.

This was not Dawn’s first experience with cancer. She lost her dad to colon cancer when she was 22 after a 6-year battle. Through her dad’s battle she, “saw the horrors that the human body is capable of.” She thinks that losing her dad and watching him suffer was probably more difficult than her own diagnosis.

Dawn with Jonny Imerman

Dawn believes that support is vital for anyone facing a cancer diagnosis. She feels that many people don’t fully understand the psychosocial challenges and feelings of isolation that come with a cancer diagnosis. Dawn has now dedicated herself to providing support to others. She began volunteering with Imerman Angels, an organization that connects cancer fighters, survivors, and caregivers to provide one-on-one cancer support. According to Dawn, “Imerman Angels has been my community to try to make sense of all of this and bond with others who have gone through a similar experience. When I am with the Imerman Angels community, I don't feel alone. I don't feel ashamed or embarrassed or any of the other emotions that I have felt at one point between the experience I've had with my dad and my own experience.”

To help support those fighting cancer, please check out Imerman Angels!

Lia's story

I met Lia in 7^th grade when we discovered our mutual love for the New Kids on the Block. (some things never change) :)  While observing what Lia has endured in the past year and a half, there have been numerous times when I wished we could go back to those simpler days when our biggest concern was whether Jordan or Donnie was cuter.

Lia at 39 weeks

On February 3^rd, 2010 Lia and her husband learned they were expecting a baby due on 10-10-10. Lia’s pregnancy was uneventful and they were beyond excited. On 10-11-10 they went in for a regularly scheduled appointment, but this time things were different. The doctor could not find the baby’s heartbeat. After several frantic moments, they realized that their baby was gone. They decided to find out the gender. It was a girl.

Sofia's footprint

As if this wasn’t enough, Lia still had to deliver the baby. She was induced and 17 hours later Sofia Rose was delivered weighing 6lbs 15.6 oz and 20 inches long.  There were no clues to explain the cause of Sofia’s death, which is fairly common in these situations. Lia and her husband held Sofia and then had their family members come in so they could do the same. Lia said, “It is so hard to see a baby that way. She should have been crying, not us.”

When she first arrived at the hospital, Lia asked her sister-in-law to contact an organization called Now I Lay Me Down To Sleep that provides remembrance photography for families of babies who do not survive.  Lia had been doing some newborn photography as a hobby and had looked into volunteering with the organization a year prior. A photographer arrived shortly after Sofia was delivered and took some beautiful portraits that Lia and her husband cherish.

In the weeks following Sofia’s death, Lia started blogging about her experience. She found that it was not only a good way to share her story, but also to cope with her grief. Writing about her experience allowed her to work through some of her emotions and also helped friends and family gain a better understanding of what she and her husband were going through.

Lia and smiley Rose

Lia has been very open about her experiences and has found that that is not always the case. She said, “infant & pregnancy loss is such a quiet topic yet it seems so common the more I talk to people about it.” Lia got pregnant again several months after Sofia’s loss, but had a miscarriage in the first trimester. Happily, she and her husband welcomed a healthy and very smiley baby girl to the world on January 20 of this year named Rose Maria.  Now, when people ask how many kids they have or if Rose is their first child Lia always includes the babies they have lost because they are part of the family too. This often catches people off guard, but she has found that many people have had similar experiences. She hopes that her openness will help open dialog for others.

Family walking for Sofia

Lia’s openness and strength has already inspired many. One person on Facebook commented, “Lia...you have more strength than all of us put together I think.” Lia credits her faith, family, and friends for giving her strength and hopes to continue to help others. She hopes her blogs help mothers who are going through similar situations feel a little less alone and may write a book in the future. (I think she should!!!) She and her husband also participate in the March of Dimes March for Babies to raise money and awareness. In fact, this year’s walk was yesterday and little Rose was able participate!

Lia is very clear that the loss of Sofia will always be difficult and will never be forgotten. Her strength through everything she has endured has come from a desire to remain strong for their future.  “We wanted to have a family and while we will never get over our loss, we do want happiness and hopefully we will figure out how to balance it all.” She encourages others going through similar circumstances to be honest with themselves and not be afraid to ask for help. Lia also encourages them to set small goals for each day, even if it is just taking a shower. She found this to be helpful on days when she emotionally had difficulty getting out of bed. Lia said, “Most of all, I want people to know that even though it might not feel like it at the time, they are stronger than they realize and they will make it through.” 

You can support Sofia Rose’s March of Dimes team by clicking here.

Erin's story

At 21, most people feel they are just getting started with their lives, but this was not the case for Erin. Instead, she found herself fighting for her life. A simple visit to her family physician about a lump above her collarbone ended up in a terrifying diagnosis: cancer. Initially, her doctor thought it was a cyst and suggested monitoring it for 6 months, but 2 weeks later Erin had a strong feeling that the lump needed to be removed and convinced her doctor to do so. Her doctor said he would contact her in 2 weeks with the results, but instead she received a call 2 days later asking her to come into the office. She knew something was wrong.

Erin’s mom and best friend accompanied her to the appointment, but she went into the exam room by herself to hear the unthinkable: Hodgkins Lymphoma. Erin went numb and could barely speak. The doctor encouraged Erin to go get her mom. “That was the longest walk to the waiting room.  The minute I opened the door, I just looked at my mom and cried, more for her than myself.” All she could think about was how much this was going to hurt everyone around her.

Understandably, Erin had difficulty accepting her diagnosis and slipped into depression.  For her, the word “cancer” meant she was going to die. She hit bottom when she received a DWI two weeks after her diagnosis. This was a real eye opener for Erin. She said, “What was drinking going to do?  Cure my cancer? Solve all of my problems? No, none of this.  I needed to step up and accept this battle and be ready to fight!” And that is what she did.

Before a treatment plan could be designed, Erin had numerous scans, blood tests, and a bone marrow biopsy to see if the cancer had spread. These tests showed some activity down her sternum, so it was decided that she would have 8 weeks of daily radiation on her neck, down her sternum, and her armpits. You can see where the darker skin was burned from the radiation and peeled off to the lighter skin in the picture of Erin during her treatment. She was given two small dot tattoos to line up the radiation treatments. These tattoos are constant reminders of her battle and can also be conversation starters depending on what shirt she wears.

Erin credits her family and friends with getting her through her “hard battle”. Thankfully, Erin has been in remission for nearly 12 years, and she is happily married with two adorable children. However, she is forever changed by her experience. She knows her risks for other cancers in the areas that were hit by the radiation are higher, so she pays close attention to her body. This heightened awareness also carries over to her children.

 

Erin’s advice to others is simple: “Always trust yourself; you know your body better than anyone else does! Never be afraid to ask questions and always look out for the best interest of yourself.” She hates to imagine what could have happened if she had waited 6 months like her doctor had originally suggested.

Happy April 7th Day!

Today would have been my mom's 69th birthday. My mom hated her birthday (and really anything that caused people to make a fuss over her) so we called it April 7th Day instead. After losing my mom in 2006, April 7th Day was always tough until last year when I decided I would honor her on this day instead of mourning her. It's definitely what she would prefer!

So, today I am starting Unite Out Loud, a blog where I will share stories of inspirational women who have faced enormous challenges and tragedies with courage and strength. My hope is that these stories will encourage and inspire others in their times of need.

The idea for this blog came from my own experiences. My mom and three aunts all fought courageous, but ultimately losing battles against ovarian cancer. When my mom was diagnosed she tested positive for the BRCA gene mutation, which increases the chance of getting ovarian cancer by 40% and breast cancer by 60%. In May of 2007 I was tested for the gene mutation and learned that I also had it. Initially I was terrified, but I quickly moved into action to figure out what I could do to reduce my risk. I had already been participating in Northwestern University's Ovarian Cancer Early Detection & Prevention Program because of my family risk, which meant an exam, ultrasound, and blood test twice a year. My husband and I met with a genetic counselor and doctor at Northwestern to talk about my options. I could either be aggressive by surgically removing my ovaries and breast tissue, or less aggressive with regular screenings. If I went the screening route, in addition to the ovarian cancer screenings I had been doing, I would also need to do breast cancer screenings every three months, alternating between mammograms, physical examinations, and MRIs. I am a worrier by nature and knew I had to be aggressive. I felt like I was a ticking time bomb and needed to do something to diffuse it.

I decided to do a prophylactic double mastectomy which would reduce my risk of breast cancer by 90-95%. It was a drastic step, but the best choice for me. A few weeks after I decided to go with the surgery, I learned that my second cousin, who is the same age as me, had been diagnosed with breast cancer and was undergoing treatment. This only strengthened my decision to undergo preventative surgery.

I found a wonderful breast surgeon and plastic surgeon at the University of Chicago, who could do the removal and complete reconstruction all in one surgery, which was very important to me. I had never been in the hospital, let alone had major surgery and was very nervous about the whole process. Dr. Song's nurse put me in touch with a former patient to get a patient perspective. This is where I first experienced the immense power of other women's stories. Hearing her experiences and being able to ask her questions was extremely helpful and comforting. I began to seek out additional women who had been through similar procedures. My genetic counselor recommended an amazing organization called Bright Pink that is focused on young women at high risk.

After I had connected with women in similar situations, I felt more empowered than scared. I felt so lucky to have this information about my risks and options to reduce my risks. These were options that my mom and her sisters did not have. By the time I went in for surgery, I was ready! The surgery lasted 8 hours and went well. After hearing so many horror stories about hospitals, I was pleasantly surprised by the care I received during my two day stay. I would not describe the week following my surgery as the best week of my life, but it was manageable. I just kept focusing on the women like my mother who had and were currently fighting cancer, and knew that any discomfort I felt was nothing compared to what they dealt with.

I cannot fully express the impact that connecting with women who had faced similar challenges had on me. It not only alleviated concerns, but also helped me to feel like I was not alone. My experience would have been much more scary and lonely without them!

My hope is that this blog will help inspire and support anyone who is going through a difficult time. Even if the circumstances are not the same, I believe we can gain perspective and strength from the courage and experiences of others!

Please stay tuned to read about some amazing women and feel free to let me know if you or someone you know has a story to share!