Young and cancer are two words we don’t often piece together, unless
we’re watching fundraisers for hospitals for children with cancer.
Yet, there are more and more people becoming afflicted with various
types of cancer who are recently married, or have started the road
to raising a family.
For the younger spouses who are just getting into what it’s like to
be married, work, deal with health insurance, diagnosis is just as
shocking and devastating as it would be for anyone. But how
can you navigate a healthcare system that has changed so much since
your parents’ and grandparents’ time? You may have selected a
lower cost plan with higher deductibles in favor of helping pay your
mortgage. Some of the daring young forego insurance, equating
youth with permanent health. Insurance is only one of the
tools needed when seeking treatment that one hopes will lead to
recovery and cure.
To help the spouse who will help their partner through this time,
Matt Herynk, Phd developed a website, www.youngcancerspouses.org.
For Matt, whose wife recently passed away from cancer in October
2007, he experienced the lack of resources for people in his age
Focused on keeping the caregiver both knowledgeable and supported,
the website contains information on a variety of topics. One
of the important areas is showing the caregiver how to care for
How it Began
The original project was a Yahoo.com Group, founded by Karen
Schlowsky-Fischer. Her husband Mark was diagnosed with an
aggressive non-Hodgkins lymphoma in November 2003. They had
been married less than four years, and he was only 28 years old.
During this time in their lives as a young married couple, the focus
should have been careers, stock options, and family planning.
Instead, their mutual focus became keeping Mark alive, and
eventually well. Karen worked to care for him, and learned the
value of caring for herself as caregiver. Without her
strength, Mark’s ability to move forward would be changed.
Even when his treatment regimen stopped working after two months,
their mutual resolve in caring for themselves as a unit allowed them
to try other therapies.
The cancer came back, but Mark’s eight and a half month survival
surprised his doctors. His passing at age 29 in October 2004
in the home he shared with Karen was only one portion of the grief
that is expected when a spouse
Other Types of Loss
Karen and Mark lost a portion of their youth to this journey.
While people of their parents’ and grandparents’ ages might be able
to call upon their children for help, they had none. Friends
and young married couples might be there for their friends, but
unless they’ve navigated healthcare/insurance systems, they may just
be a companion rather than a guide.
Grieving the loss of a future with the beloved incorporates the
dreams shared, and also the secret ones that each spouse keeps until
the time is right. The possibility of loss doesn’t mean that
one shares those secrets, either. It may be something as silly
as “I started saving so we can take a trip to Paris for our tenth
anniversary,” when one has only been married a few years. It
may mean having to turn down a promotion that would have allowed for
a move to another area. While many spouses would research what
the move would mean to their ailing partner, cancer is a life
changing process that takes center stage. For some, it may be
easier to turn the promotion down and continue the battle in the
Aftermath We Don’t Compute
Adding up all the variables for a spouse who survives the grueling
regimens of therapy only to lose their loved one is difficult.
After the passing, the surviving spouse must begin anew, making
decisions on whether to live in the same home and other decisions.
Friends and family may open their homes to the young widow(er), who
may be in need of financial help after huge copayments for
treatments and other expenses. Still, a plan has to be made
because initial hospitality can only last so long. Even if Mom
and Dad have the resources, they want their child to be able to live
a full life.
In most cases, the married couple will talk some things out, maybe
many things. But when reality comes to pass, action is needed.
This is also where groups like Young Cancer Spouses can offer
support. In Karen’s case, she says the group gives meaning to
what she and Mark went through. “[It] helps support those who
come after me on the journey of being a Young Cancer Spouse.”
Expectations For The Unexpected
Greg Johnson, Founding Director of Young Cancer Spouses, refers to
his family as “the all American family.” While after his wife
Stephanie’s diagnosis, they tried to remain so, there were many
things they didn’t expect.
Greg and Stephanie had been caregivers for his grandmother who had
Alzheimer’s. While they knew what a caregiver might be defined
as in that situation, Greg especially got an expanded view. “I
didn’t realize how lonely the job can be.” People suddenly
became afraid they were imposing themselves. While their
intentions were good, no one seemed to know what move to make,
including Greg. “So we went for six months living in a
Within the bubble, this couple found that they did argue more, and
problems took on a new intensity. The fortunate balance was
that they made more time for one another, enjoying any time they
had, regardless of whether it was a chemotherapy day, or a “good
day.” As he puts it, “Live each day with no regrets.”
This is how they managed to tolerate the increased tension, which
included what and how much to tell their children.
Luckily, he found the online group and gained not only support, but
eventually the mission that led him to be Founding Director.
When roads diverge
Matt Herynk, Phd is a founding director along with Karen and Greg.
Matt’s wife was interviewed several months prior to her passing on
October 6, 2007.
Kara noted that while Matt has spent time researching cancer
treatment on a professional basis, they will have disagreements on
how to proceed with her treatment(s). It is one thing when
both spouses are uninformed about medical treatment. Often,
they can learn together, starting at the same point (and sometimes
While neither Matt nor Kara chose to indicate a “clear winner” in
the debates, they did make it clear that both parties have something
to offer. In Matt’s case, it was especially true, because he
was able to translate the mish-mash of terminology and offer
concrete explanations. Kara had the advantage of having an
instant translator at her disposal.
The Young Cancer Spouses group tries to offer
that to couples, and Matt continues to break down the jargon for
members who need it.
The years ahead
This group provides a network to help individuals who are age 20-39,
approximately. While they have limited the membership to just
spouses or partners undergoing this journey, they realize the
information may be of use to friends or family. Their focus is
to keep the help where it was originally targeted: the young
spouse whose life partner has been diagnosed with cancer. A
visit to the site is worth anyone’s time, and there are blogs and
links to other sites that will help anyone, regardless of the role
they play in the cancer patient’s life.
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