Note: For many years Mad Hatters Tea Party organizers have been content to have a preview article in the Sequim Gazette that was informative and focused on survivors. This year, organizers decided the group and the public should learn the raw reality of how breast cancer affects families. The following is one such story. — PMC

When you’re greeted at their door by Judy Coram and her daughter Michele Swisher, the women appear to be the picture of health: both have deep auburn hair, peaches and cream complexions, bright eyes and engaging smiles. But that’s a thin veneer — both of them are coping with a diagnosis of metastatic breast cancer.

Almost 12 years ago, Judy, now 75, felt a thickening in her left breast, but put off having a screening because her husband was quite ill and on dialysis.

“Even after I felt the thickening, I didn’t go to the doctor for six weeks. I knew what it was. My maternal grandmother and mother both had breast cancer and I’m the oldest of four women in my family, so I expected I’d get cancer sometime.”

Her primary care physician ordered two biopsies and they were positive. Judy proceeded with a lumpectomy and biopsies of three lymph nodes; fortunately, only one was positive.

“My thinking at the time was take it out, throw it away and get on with life,” Judy said. “I had chemo for months and did radiation for months and lost all my hair. It took a couple of years getting back to health. It did not occur to me I would ever have breast cancer again.”

Michele recalled, “In 2004, I had so many significant changes in my life, I barely remember the first diagnosis. I remember Grandma dying of cancer more than taking my mother to her surgeries.”

A devastating blow

By 2007, Judy’s husband had died and she still was getting prophylactic breast screenings every six months. On March 24, 2015, she learned the cancer had come back with a vengeance. It had progressed to metastatic breast cancer — on her bones, in her lymph nodes, on the outside of her lungs and very likely in her bone marrow and blood. More therapy would not help her.

“It was a huge, huge crisis for me and it took me months to get over the shock,” Judy said, her eyes misting. “It was a very emotional way of living. I was told point blank, ‘You will die of this.'”

By mid-spring, it was clear that Judy needed a live-in caregiver — the side effects of her cancer drugs gave her “chemo brain” which was emotionally troubling.

“It’s not a fuzziness,” Judy explained. “I’ll believe I have done something but I didn’t or vice versa. It causes me to not remember things, not being able to find a word, it happens daily.”

Even though 45-year-old Brian, the son and brother, already lived in Sequim and was helping his mother, Michele, 49, upended her life in Portland, Ore., and moved in with Judy. Right away, Michele was confronted with her mother’s memory lapses and losses. It became an emotional tug-of-war.

“Proving to her that she has or hasn’t done something is a huge thing because she’s so certain something was done or wasn’t. I try to console her but either way she gets upset. It’s really devastating to her,” Michele said.

“It makes me feel like I’m going crazy, losing my mind,” Judy added in a trembling voice. “That’s more of a fear than dying of cancer.”

The tightrope of caring

Michele gently ribs her mother about being relegated to a bedroom and bathroom in Judy’s home, but also acknowledges this kind of intimacy is intense.

“It’s bringing up how my mom’s going to die — when I have to watch her waste away and starve to death — the journey of the second time with it being terminal, the end,” Michele said. “My life literally is on hold until she dies. … Nobody wants to say that you want them to die quickly — that’s not socially acceptable — but you want to see them out of their pain.”

Michele, an adherent and promoter of alternative health therapies, admits that at times her caregiving style has been “daughter knows best.”

“One of the hardest things for me is to have a conversation and make decisions together that she may have no memory of what we’ve agreed upon. How do I feel? Extremely frustrated, hopeless, completely out of control because I don’t know what to expect from one hour to the next. We have strong disagreements,” Michele said matter-of-factly. “Her medications cause extreme ups and downs — she may be happy for half the day and then crying the next. She gets completely depressed about the memory issue.”

Judy agreed, but added, “I am vibrant when I’m up and I can put on a good face and still feel bad. … You know, life is hard and you have to find the joy. If we don’t have difficulties, we couldn’t appreciate the joys — all you’ve got is today. I could die of cancer some day but I also could get hit by a Mac truck.”

The journey and letting go

Michele confessed, “Sometimes I feel like I’m in jail but at the same time I feel like her jailer when I insist she needs to go lie down. I feel I’m in jail because even if I go out of town for the weekend, I feel guilty when I get home because she’s not been able to care for herself when I’ve been away.”

Both mother and daughter share another characteristic — neither was brought up to ask for help and learning how to cope with the terminal diagnosis has been a steep learning curve for each of them.

Both give kudos to the Olympic Medical Cancer Center, not only for its medical support but also for its emotional support. Michele said OMCC patient navigator Susan Clements connected her with Harmony Hill Retreat Center in Union that offers wellness events monthly in Sequim for cancer patients and their caregivers.

“They also have cancer retreats and it’s amazing that you learn all kinds of coping skills. They really reinforce that as a family member to take care of yourself and to let the patient’s cancer be their own,” Michele explained. “What that means is my ideas of what she should do, if she says no and refuses my idea, I really don’t have the right to be mad about that. I have never been one to ask for help, so for me Harmony Hill and Susan saying, ‘You can’t take it personally — it’s your mom’s journey and you’re there to support her,’ is good.”

Daily, Judy has her flower gardens to attend to and walking her dog Perla around her small neighborhood or just enjoying the fall sunshine and breezes on her patio. She flies a flag when she’s up for neighbors to visit. She’s also committed to getting counseling again.

“This time I want the counselor to help me figure out some of the questions I have about life — knowing I’m going to stop is almost freeing,” Judy said.

The path ahead

“I have been told that dying of cancer is very painful,” Judy began in a strong, clear voice. “When the time comes if I’m miserable or I feel that my personal care is too much for my family, I believe in (having) the right to die. Once I decided that, it made it easy to talk about. I don’t want to be a burden to my family and I hope I’m brave enough to do what I feel is right.”

Acknowledging that after several hours of being up and about, her mother is in excruciating pain, Michele said, “I know that I will want her to be out of pain, emotional and physical, long before other members of our family. I can see the everyday pain and ups and downs that will only continue to get worse. The bottom-line is having the attitude and belief we don’t have to suffer and die. We can move onto the next journey with serenity.”

Asked for her parting thoughts, Judy said, “I have had to decide to live the life I am in the now. This is now.”