“You are not a Mommy, you are a cancer girl!" 4-year-old T squawked in protest at her mom.
It was not yet 8 am. Breakfast remained on the table. We were getting ready for school, and unlike most mornings, R was out of bed and helping T and Q leave for preschool. R stared at her daughter, stunned. She had been stripped of her identity as a mom and left only with what her appearance already indicated: a young woman with cancer.
For T and 18 month old Q, the previous 9 months of cancer has been more than the loss of hair, the frequent trips to the hospital and endless doctor appointments for their mom and dad. Its more than a lack of energy and a slow regression from daily life. It is an invisible “boo-boo.” T can’t kiss it and make it go away. Her shock gone, R collected herself and bent down to face T. Pulling her daughter gently into her arms, she said, “I am still a Mommy, I am your Mommy, even though I have cancer. I will always be your Mommy.”
On Father's Day 2010, R who was on the eve of her 35th birthday, found a lump in her right breast. It turned out to a rare, aggressive and genetic form of breast cancer that most often affects young women. It would later be labeled stage three.
The young couple, whose two children were ages 3 and 12 months at the time of diagnosis, where shocked. A stay at home mom and a middle school teacher, the couple didn't know how they would handle the coming months, and possibly years, of battling cancer. R faced a double mastectomy, 4 months of chemo, 6 weeks of radiation and months of rehabilitation. They couldn't even fathom the impending exhaustion.
As long time friends, they asked if I would come and take care of their kids, R and the house so G could continue to work and the kids would have a more stable home environment. While my primary role was a "mom" and as a caregiver, I documented the journey as much as possible.
R's struggle with breast cancer, though shocking, is not unique. 1 in 8 women will develop breast cancer at some point in their life, with over 1.3 million new cases developing worldwide each year. Even though 95% of the cases occur in older women, ages 40 and above, 4-5% will develop in younger women. That means that roughly 10,500 women in the US ages 15-39 will develop invasive breast cancer each year. Compared to older women, young women generally face more aggressive cancers and have lower survival rates.
Additionally, young women are posed with unique challenges while battling breast cancer, including early menopause, infertility, financial instability, and body image issues. They face a higher risk of developing other types of cancer as well. On the brink of or already in the middle of motherhood, young women often have more responsibilities as they raise children, manage a household, and juggle a career. They may struggle to maintain their roles as mothers, wives, girlfriends, etc, as they undergo surgery, treatment, therapy and reconstruction.
Over 8 months, R has undergone surgery and months of treatment, with endless trips to Boston and the Dana Farber Cancer Institute where she has and continues to receive care. She will spend the next 5 years taking a "chemo pill" and awaits reconstructive surgery and the return of her life to a new normal. Her daughter waits expectantly to have her "normal mommy" back and taking care of her.
R and T have a quiet moment in the sun during their last family outing before R headed to Boston for surgery. September 2011
Q (center) entertains everyone at dinner. R and G would be in Boston and away from their children for 6 days, the longest time the family had been separated. September 2011.
4-year-old T talks to her mom before surgery about how the cancer gets out of her body. It was often difficult for T to understand the concept of cancer as at first it had very few visual side effects. Later she would explain cancer as taking all of her mom's energy. September 2011
Two nights before R's surgery to remove both breasts and do a partial reconstruction at the Dana Farber Institute in Boston, the insurance company called to say they wouldn't cover the second half of the surgery, the reconstruction. The explanation was that she could have the same surgery "in network" here in Maine at a later date. The news was devastating. However, the plastic surgeon doing the reconstruction, after hearing the news, said that his office would cover the cost and that they would go ahead with the surgery. After pressure and persistence from outside sources and doctors, the insurance company caved. The surgery was covered. September 2011.
With a bilateral mastectomy, R had drains inserted into her chest cavity to remove excess fluid. Twice a day, the fluid needed to be measured and removed from the collection bottles. Ten days after surgery the drains were removed. September 2011
G and T wait for R at the doctors office in Boston. October 2011.
Exhausted and dreading the impending onslaught of needles, R waits in the plastic surgeon's office for the doctor to check her healing. October 2011.
In order to preserve her skin and create a cavity for future reconstruction, R has temporary implants. Over a series of several visits, the plastic surgeon will expand her chest wall to prepare her body for the final reconstruction that will take place about a year later. October 2011.
In the few short weeks between surgery and the beginning of chemo, R, G and T and Q go for a hike at a nearby state park to enjoy the late October warm weather. R knew her outings would be severely limited once she started chemo. October 2011.
R's hair has started to fall out so she is going to have her head shaved and get fitted for her wig. T gives her mom a hug before she leaves. She understood her mom would come home without hair. October 2011.
Without fanfare, R cuts off her remaining hair after her first chemo treatment. Having her hair fall out was painful. October 2011.
Head-shaving. October 2011.
Seeing her mom without her own hair or without her wing, T is unsure what to think. October 2011.
Q, at 16 months. October 2011.
Flight to Boston for second round of chemo. R flew on Angel Flights, a non-profit organization where pilots volunteer their time and their planes to fly critically ill patients to hospitals. October 2011.
R meets with her plastic surgeon for another round of saline fluid to continue her expansion. October 2011.
R's youngest sister, who lives in Boston, visited her at Dana Farber for her chemo. October 2011.
T and Q lay in bed with R while R sleeps. R was continually exhausted, both by the chemo and radiation. March 2012.
During chemo, all of R's fingernails and toenails filled with fluid and then fell often, causing her great pain whenever she used her hands. She is waiting for them to heal and grow back. March 2012.
Upset that he cannot have more watermelon, Q voices his frustration. April 2012.
Fussing before putting on her pjs before going to bed, T cries that she “wants her daddy to put her to bed. I need my daddy.” In an effort to afford the medical bills, G, in addition to being a middle school teacher, is also a carpenter/contractor, and picked up various renovations throughout the year. This evening he was working late to finish a bathroom remodel. February 2012.
Q swings in the back yard. Too young to understand and just learning to talk, he often was the most confused at the changes taking place in the home. November 2011.
T plays doctor with dad on a saturday morning. The kids were given the doctor set before R began her cancer treatment. March 2012.
Feeling terrible and ill from her final round of chemo, R is too exhausted to talk with G. One of the two types of chemo R received made her feel removed from what was happening around her. "I felt like a dry erase board. I felt like someone was wiping me away from life." January 2012.
Waiting room of radiation. Round 16. Twelve more to go. February 2012.
Radiation beams. February 2012.
Aquaphor and burns. To protect her skin, R robs lotion on her skin. Six months after radiation is finished will be the soonest she can have reconstructive surgery. March 2012.
A slow sunday March morning. R is thankful that she can do radiation in Maine instead of in Boston (where she did her chemo treatment), otherwise she would have been away from home and her kids for over 6 weeks. March 2012.
For the first 7 or 8 weeks following her surgery, R couldn't pick up her Q. After awhile, he stopped going to her. It took him several months to transition back to seeing her as "mom." February 2012.
R on the phone in her room. She spent several months in the room in bed, coming downstairs only occasionally. March 2012.
Fuzzy hairs start to grow. March 2012.
Each morning G calls to talk to Q and T during a free period at school. Often it is as everyone tries to get out the door. As R felt better with time, she assisted in getting ready for school. Q talks to dad and T combs mom's "hair" in the background. March 2012.
Boston. Plastic surgeon's office. R reacts to the plastic surgeon's options for types of reconstruction possible should her skin not hold up. He said it was too soon to tell. March 2012.
R is T and Q's "patient" as they fix her toes and check her out. The kids played doctor almost every day throughout the past 8 months. March 2012.
A neighbor visits with her new baby while R and Q are outside. March 2012.
Getting ready for preschool. With each day furter from radiation, R find herself gaining more energy. While her nails have yet to grow back, and she still experiences neuropathy in her hands and feet and new hot flashes from the chemo pill she takes, the biggest side effect is that she can no longer multitask or handle multiple stimuli at once. March 2012.
R comes down the slide after removing party streamers from the play house. March 2012.
G and R debate whether or not to go to the ER after R says she is losing her peripheral vision in her left eye. They decide it is due to exhaustion and dehydration. Within the hour, her sight returns. Marcy 2012.
R's eyelashes slowly start to grow back in.
A morning snuggle with Q. April 2012.
during chemo and much of radiation, R rarely made it to the dinner table or cooked. with her return to her role as mom, the family held hands to pray before dinner, thanking God for his blessings.