“I am often exhausted, but I have to just keep going.”
A cancer caregiver is facing her own battle with the disease while continuing to tend to both her husband and mother.Read More
Then, in 2016, Knight lost consciousness while mowing the lawn for her elderly aunt. Doctors ordered a series of scans once she arrived at the hospital and within days learned the reason for the panic attacks, headaches, and vision problems that had been plaguing her for years: she had a grade 3 glioma. Should that tumor grow or transform to a grade 4, it would become a glioblastoma.
Knight then checked herself out of the hospital to return home and take care of her husband, a Non-Hodgkin lymphoma survivor now battling myeloma.
She also returned to work cleaning houses, though her diagnosis forced her to walk from job to job since she could no longer operate a motor vehicle.
Doctors could not remove the tumor due to the risk of destroying healthy brain cells and gave her two years to live. Knight finally started radiotherapy a short time later, after learning she could undergo the treatment at the same facility her husband received his weekly therapy. After six weeks, she switched to chemotherapy for eight months.
She managed to find the time for those treatments only because her husband received his cancer care at the same facility, and she could schedule her appointments to fit his schedule. When she is not caring for her husband, she is with her mother, who struggles with hearing loss and facial paralysis.
Knight monitors her tumor every few months and has started using CBD oil to treat the side effects she started experiencing over 15 years ago. Her doctor also put her on anti-seizure medication, which allows her to swim.
She has found that swimming gives her a sense of calm, though she must remain in shallow waters if she suffers a seizure, like the one in 2016 that led to her diagnosis.
“The diagnosis was a huge relief. I had known for some time that something was happening, and so it was the confirmation that I really needed. For all this time that had been going on – a scan could have saved me from years of feeling unwell and not knowing why,” Knight tells The Brain Tumor Charity.
“I am anxious about leaving it too long without a scan now – I was ignored for so many years, and I don’t want that to happen again. I know that things could change for me, and I do have days when I am worried about the future. But I try to remain optimistic. I worry more about my mom and my husband than myself.”
Being a Cancer Caregiver
After Tara Lassard was diagnosed with stage IV ovarian cancer in 2015, her mom became her cancer caretaker, much like Jo Knight cares for her husband.
In a previous interview with SurvivorNet, Lassard explained how it impacted the relationship between the two and her mother’s emotional and physical toll.
“It’s a really hard thing to navigate. I think, specifically the beginning, it was an uphill battle trying to help me through what would have been pain relief, and that sort of a fight that it got to be a difficult place to navigate in a relationship,” recalls Lassard of the transition from a mother-daughter relationship to a caretaker-patient one.
“I think that after a while, her ability was to see me as a patient, and that were the conversations we were having, later on, is that somewhere along the lines, I just transferred in her mind to the patient that she had to care for, rather than her partner and somebody that would be equal in a partnership.”
What Happens When a Family Member Becomes a Caretaker
Lassard is also quick to note that she is well aware of her mother’s extraordinary sacrifices on her behalf.
“I see now my mom has been my caretaker, and I see love through her and what that looks like when it’s the love of a parent versus the love of a partner, and I just say that it’s a difficult place to be as far as a caretaker, that it’s often a thankless job,” Lassard points out.
“It’s a 24/7 job. Anytime the phone rings and she sees it’s me, she thinks it’s the worst thing. Largely, I am so grateful that I have her there just to notate everything that happens. We go over things in detail. Her life’s been put on hold for the time being when I’m in treatment. She’s with me.”
This is why Lassard thinks there needs to be more help and resources available to those who give up so much to care for another.
“I’m an advocate now, as a cancer patient, for caregivers,” she says. “That they have ways that they’re able to get their help and try to navigate through what that looks like with their friends and partners and kids.”
Husband Documents His New Role as Wife’s Caretaker
Treatment of Glioblastoma
The most significant breakthrough in the fight against glioblastoma came in 2002 when the FDA approved temozolomide for patients.
That is the chemotherapy drug that patients take after surgery and radiation.
It is also one of just five FDA-approved drugs that treat glioblastoma, along with lomustine, intravenous carmustine, carmustine wafer implants, and bevacizumab.
The carmustine wafer implants were developed and tested at Johns Hopkins, and in 1996 received FDA approval.
“The standard of treatment for a glioblastoma is surgery, followed by daily radiation and oral chemotherapy for six and a half weeks, then a six-month regimen of oral chemotherapy given five days a month,” explains Dr. Weingart.
“To start, the neurosurgeon will remove as much of the tumor as possible and may implant medicated wafers right into the brain. Developed at Johns Hopkins, these wafers dissolve naturally and gradually release chemotherapy drugs into the tumor area over time.”
Then there is temozolomide, used to treat advanced brain cancers since 2013 when it received FDA approval. “The drug is taken in pill form and works by slowing down tumor growth,” notes Dr. Weingart.
And for those patients who are not well enough for surgery, “radiation may be used to destroy additional tumor cells and treat tumors,” says Dr. Weingart.
“Patients with GBM have effective treatment options, there’s four of them: surgery, radiation, chemotherapy, and tumor targeting fields these electric fields that we can use to treat these cancers,” says Dr. Wahl. “But outcomes for these patients are still suboptimal. What I tell my patients is that we have these effective treatments but what they do is they delay the time to when this tumor comes back. Only in absolutely exceptional circumstances would we ever talk about getting rid of one of these cancers a few.”
There is also a fifth type of treatment, targeted drug therapies.
One of those options on the market and available to individuals who have not responded to other treatments is Bevacizumab (Avastin).
That drug blocks glioblastoma cells from sending requests for new blood vessels. The blood vessels feed and allow tumors to grow.
Fighting Brain Cancer With Electric Fields