Talk Shows &
Stories : Caregivers :
Lesbian Widows Tell Their Stories
Lesbian Widows Tell Their Stories
Recorded April 7, 2003
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| Joanne |
Susan |
Rebeca |
Joanne's Story: Losing Her Partner to
Brain Cancer
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Dr. Ronit Elk:
Hello and welcome to the American Cancer Society Cancer Survivors
Network®. My name is Dr. Ronit Elk, and I will be your host
today. I will be talking one-on-one with women whose partners had
cancer, but unfortunately they have passed away. I myself have been
a caregiver for three of my very close family members, all of whom
died of cancer, and so I am especially pleased to speak to our
guests about these very difficult issues and major challenges. We
will talk about what it is like to be a caregiver, like what were
some of the most difficult challenges and how this affected this
relationship. We will also touch on communication, especially the
most difficult issue, I think for most people, which is talking
about coming to the end of life. I'd like to talk a little bit
about what helped and what hurt in facing your partner's cancer,
and then if we have time to touch on legal issues, but also look
at how you've been managing since your partner's death.
And our first guest today is Joanne. She is 41 years old and
she lives in Massachusetts. She doesn't have children, but the
important thing is that Joanne had a partner, Wendy, and
unfortunately Wendy lost her life partner to brain cancer in 1990.
Hi, Joanne.
Joanne:
Hi, how are you?
Dr. Ronit Elk:
Fine. I believe that your partner was diagnosed around 1990 and
that the two of you just met each other a few months before.
Joanne:
Yes, we had known each other but we had become a couple three
months before she was diagnosed.
Dr. Ronit Elk:
Oh! That is just so difficult, and I believe that you were the one
who took care of her, you were the caregiver, so was Wendy's mom
and her 14-year-old daughter.
Joanne:
Yes, that was the primary team. We were fortunate. Wendy had lots
of really wonderful friends and we were in graduate school and a
lot of our fellow students pitched in, but the support network was
largely her friends and some of mine, but I was relatively new to
Boston at the time.
Dr. Ronit Elk:
I'm really sorry, but I'd like to let everybody know that eight
months after she was diagnosed, Wendy died.
Joanne:
Yes.
Dr. Ronit Elk:
I admire your courage in being able to talk about something so
difficult. So, I really thank you so much for joining me,
Joanne.
Joanne:
Oh, you're welcome.
Dr. Ronit Elk:
Tell me about you and Wendy. Let's just talk about the two of you
first.
Joanne:
Well, we met--it was both of our final years in graduate school in
social work. We were working on our Master's and I know I fell for
her and she seemed to reciprocate, and like I said, the first
three months, which developmentally are pretty kind of honeymoon-
ish, are the ones that we were in. She was very healthy but had
noticed right around the December holidays that she was having
some symptoms, headaches and kind of tingling in her arm and
weakness and so forth. She thought it was something related to
like chiropractic things and it was just really out of the blue.
She was diagnosed the first or second week in January. I'm going
back about 13 years, so some of it feels like yesterday and some
of it I think I might have blocked some of the details. But it was
a total, total shock that it was a brain tumor and that it was a
malignant brain tumor.
Dr. Ronit Elk:
Were you with her when she was diagnosed?
Joanne:
Yes, I was. I was at the emergency room with her. That's where we
got the news, and it was from someone she didn't really know.
Dr. Ronit Elk:
And the thing is that both of you were very young.
Joanne:
I was 28.
Dr. Ronit Elk:
That's young.
Joanne:
Yeah, I was very young. She was 14 years older than me.
Dr. Ronit Elk:
It's still not a time, I mean, not an age when one ever thinks
about death.
Joanne:
No, not at all. And I remember having conversations on the phone
with my mom and my dad, especially my dad saying, "I feel like I'm
in the middle of a really bad nightmare." Like I remember saying,
I mean, it's a ridiculous statement, but I remember saying to him,
[laughing] "I'm too young for this to be happening to me." And it
was just very, very difficult. You know, peer-wise, most of my
peers were very supportive, but it was like a very foreign thing.
It wasn't anything that they could imagine experiencing.
Dr. Ronit Elk:
Right. So although they could be supportive, and correct me if I'm
wrong, but although they could be supportive, it's hard for
somebody that age to even think about death, let alone watching
somebody die.
Joanne:
Yeah. I think that's true, and especially when it comes to being
your partner. You know, people are familiar maybe with parents or
grandparents or aunts or uncles.
Dr. Ronit Elk:
Yes.
Joanne:
But when it comes to your partner, your significant other or
whatever term you want to use, that was like a whole different
ball game and one that I wish I didn't have to play. [laughs]
Dr. Ronit Elk:
I have no doubt that you completely changed. I mean, that your
life would have been very different without this.
Joanne:
Oh, I think so. I mean, I think that's true of most of our
experiences, but I think that this was probably pretty key in
shaping who I have become, my experiences. I went into social work
school having no idea what a medical social worker was, let alone
becoming one.
Dr. Ronit Elk:
[laughs] Oh, were you just doing general social work before or--
?
Joanne:
Oh, I thought I would go to social work school and hang a shingle,
become a private therapist.
Dr. Ronit Elk:
So you work in a hospital?
Joanne:
My first job out was in a hospital for five years, but now I
actually--I'm working for a federally funded program called The
Family Caregivers Support Program, and our local program is called
Caregiver Alliance.
Dr. Ronit Elk:
So you actually support other people?
Joanne:
Yes. Our program offers free support to family caregivers. Our
program is focused on family caregivers of elders, but there are
other programs that focus on the caregiver regardless of the age.
I'm in mostly geriatric care is what I do, so ours focuses on
people 60 and older. The caregiver could be any age, but the
person who has the illness is 60 or older. So, that's what I get
to do and I'm very passionate about it.
Dr. Ronit Elk:
Oh, I'm sure! There has been so little, unfortunately, so little
attention on the caregiver. I remember I myself was very desperate
to sort of find other people who were caregivers. In the end I
went to a Hospice group which helped a lot. So I think that it's
wonderful that what you went through as such a young person you
are able to use now. So, let's talk a little bit about what it was
like for you to be a caregiver then.
Joanne:
OK.
Dr. Ronit Elk:
How did it affect you?
Joanne:
Well, it kind of turned my life upside down! It was my last
semester in graduate school and I was doing an internship in a
hospital and I was going to classes. Here I was with my partner
being very, very sick and kind of immediately paralyzed on her
left side. So in addition to the cancer diagnosis, she also was
pretty much in a wheelchair right after the surgery. So, there
was part of me that went to my advisor--I remember saying "I can't
finish school right now. I'm just going to have to put this on
hold." I just was very overwhelmed. The academic institution that
I went to and the institution I was doing my placement at, they
were both very supportive, and they said, "Let's sit down and
figure out how this can work. How you could do what you want to do
with Wendy and for Wendy, and also continue with your life." And
so, we just stretched things out a bit.
Dr. Ronit Elk:
You mean your courses?
Joanne:
Yeah, my courses, my placement. My faculty advisor talked to my
professors, and my professors were great. They basically
encouraged me to come to class when I can and I turned in my
papers, but I got extensions on everything. In my field placement
I reduced my hours and then just did it through the summer. For
instance, they would let me come in at 11 or noon and work to 7.
So that gave a chance to wait for the home health aide to come
before I left Wendy because she couldn't be alone.
Dr. Ronit Elk:
That's a very supportive of them.
Joanne:
It was very supportive. I felt like I was carried through that
whole time. When people say, "How did you get through it?" I say,
"I felt like those around me really carried me through."
Dr. Ronit Elk:
Wow! So, I mean, I find that that's incredibly supportive, not
that I'd expect anything less from a school of social work. I'm
very, very pleased to hear about that. Tell me a little bit more
about the caregiving role that you were in, sort of like your day-
to-day life.
Joanne:
Well, it was everything from helping--Wendy was a very independent
person, and so it was kind of trying to learn to balance that she
would want to do things on her own, and so she basically taught me
what she would need help with. It was helping her with her
activities of daily living, like assist with toileting, with
bathing. There was a home health aide that would do some of that,
but that wasn't all the time. You would get a few hours a day,
kind of thing. Helping her get dressed, helping her at night.
Sometimes it was kind of being around for her 14-year-old daughter
to have someone to talk to. It was definitely shared, like I
said, with her mom and with friends. Cooking--which wasn't exactly
my forte [laughs]--and driving her places, taking her to the
doctor. She had--her friends made a calendar and they all signed
up, and so the paths were kind of rotated.
Dr. Ronit Elk:
How wonderful!
Joanne:
It was wonderful. I definitely didn't feel like I was alone in it.
I was also totally freaked out with the fact that this woman who I
was so in love with was going to die. I just didn't know, but any
moment she was going to be taken from me. And so I (a) just wanted
to spend any, every moment I could with her, and (b) I was
terrified of being angry with her because I was afraid that she
was going to die angry at me.
Dr. Ronit Elk:
So does that mean you felt angry sometimes, but you couldn't
express it?
Joanne:
Absolutely. Absolutely. I was not so much angry with her. I mean,
I was angry that she was dying. I was angry at the whole
situation, but it was more that sometimes she--it took a more
experienced therapist to explain this to me at the time, that
Wendy would want to--it seemed like she would want to fight with
me. Like I felt like she was trying to pick fights with me and I
didn't want to fight with her. I wouldn't engage with her around
it. It was suggested that maybe that was safe for her, and also
sometimes when people are going through dying that they are
separating, and that that might have been one of the ways that she
had to gain some distance.
Dr. Ronit Elk:
Absolutely.
Joanne:
I mean, I remember her being so angry and taking this tissue box
and with her good arm, her right side [laughs] and flinging it at
me. It was just a tissue box, so it wasn't anything but she just
started picking up things and throwing them at me, and I went in
the bathroom and I closed the door and I just wouldn't come out
until, like she kind of calmed down.
Dr. Ronit Elk:
And were you able to talk about it afterwards?
Joanne:
Yeah. Yeah. We kind of cried together.
Dr. Ronit Elk:
Did the two of you ever talk about death?
Joanne:
Yeah.
Dr. Ronit Elk:
Were you able to prepare for each other--?
Joanne:
Yeah. One of the first things after when we went to the
neurologist that followed her and he gave her the prognosis of
three months.
Dr. Ronit Elk:
Mmm!
Joanne:
And she was stubborn so she outlived that a few times. She asked
me in the parking garage of the hospital, she said, "Would you go
not into couples therapy, but would you go to a therapist to do
grief counseling with me?"
Dr. Ronit Elk:
Oh!
Joanne:
"To do death and dying with me?"
Dr. Ronit Elk:
How did she know about that?
Joanne:
Well, we were in social work school.
Dr. Ronit Elk:
Oh, well, yeah. [laughs]
Joanne:
[laughs] She was very wise.
Dr. Ronit Elk:
And so you went to a therapist?
Joanne:
We did. We saw this really wonderful, talented woman, and it was
around, you know, death and dying and how to say "goodbye".
Dr. Ronit Elk:
Together you went?
Joanne:
Yeah. Together we went until the last few weeks of her life when
she was too ill to go, and I remember the day before she died I
was on the phone with the therapist. I was sitting with her, with
Wendy, all day, and we had an appointment and I had to cancel it,
and I was talking to her and I was crying and she said, "Joanne,
it's time to let go. You need to give Wendy permission to go. You
need to give her permission that she can move on with her journey,
and you need to let her know that it's OK." And I said, "I don't
think I can do that." And she said, "Yes. You can do it and you
need to do it and you can do it." And it was just excruciatingly
painful. On the other hand, it sort of felt like this one last
gift that I just really needed to give her, and so I told her. And
it was also the day that everybody was moving her daughter out and
Wendy wasn't talking. I was giving her morphine--the Hospice
nurses taught me how to give her morphine just in her mouth. She
wasn't accepting food and I would give her morphine through the
syringe. She wouldn't open her mouth. And then I would say,
"Remember, you said 'No pain'? Well this is the stuff." And then
she would part her lips. And then I told her that her daughter was
being moved out to go live with her mom, and at the end of the
day, I told her that everything was OK, that her daughter was
going to be OK and that I loved her and that she didn't need to
hold on for anyone any more. And she died the next morning.
Dr. Ronit Elk:
What a gift you gave her. What a gift!
Joanne:
I was so upset that I wasn't there when she died, but her dad told
me that that's probably the time she picked. He was there. He
called me. He sent me home. I had my own apartment with some other
students, and he said, "You should go home and get a rest." And I
left and then I was like--at the time it was hard for me to not
beat myself up, but--
Dr. Ronit Elk:
Yeah. It's possible that that's why she went.
Joanne:
Well, I think between her daughter--the first day that her
daughter was out and the first day in several days that I wasn't
there, you know?
Dr. Ronit Elk:
That it was OK at the time.
Joanne:
Yeah. She couldn't speak, but I think she kind of--I think she
kind of knew what was going on.
Dr. Ronit Elk:
That's the most wonderful gift that you can ever give anybody.
Joanne:
Yeah.
Dr. Ronit Elk:
And I've been there, so I do know.
Joanne:
It is the most wonderful and it could be the hardest.
Dr. Ronit Elk:
That's correct, and you put it so beautifully. How was it
afterwards?
Joanne:
Oh, just awful. Just really, really awful. I think the one person
who really helped me kind of keep it together, because I felt like
I sort of had to keep it together, was her 14-year-old daughter.
Dr. Ronit Elk:
You were both sort of taking care of her.
Joanne:
Yeah, and we had really formed a relationship. She had become fond
of me, kind of dependent on me, even though the decision was--
Wendy had asked if her daughter could live with me. I was 28
years old. I didn't have a job and I was living with three other
women. [laughs] I'm only laughing because it was like, I was just
graduating, and I remember her daughter and I went out for dinner
when Wendy was still alive, she was still in the hospital, and we
went out to dinner, and I didn't want to disappoint anybody, and I
was just, "How am I going to do this?" And her daughter just
looked at me, and she said, "I've been thinking about this request
of my mom's, and I don't know. I'm not going for it. I think it
would affect our relationship. I've never thought of you as an
authority figure and I don't want to start now."
Dr. Ronit Elk:
[laughs]
Joanne:
And I was like "Whew!" This kid was like 14 going on 30, you know?
Dr. Ronit Elk:
And you've remained in contact with her?
Joanne:
Yeah. To this day. And there were different times in her early
20's where she was kind of in between places and jobs and things,
that she has lived with me--when I was single or when I was with a
partner a few years ago--that she has stayed three months at a
time or so. It means a lot to me that she feels like, you know, I
feel like she feels like where I am is always open to her, you
know, is home. That she can always--and that means a lot to me.
She lives out west now, but we're always--we're close. And
actually she came out when Wendy was still alive, and Wendy was so
overwhelmed with everything going on, she said to her, "I think
you should talk to Joanne. She came out when she was young."
[laughing]
Dr. Ronit Elk:
[laughs]
Joanne:
Wendy just didn't know what to do with that at the time, because
she had been diagnosed already and she was like "Whoa!" So we
just, yeah, we're definitely--so, how did I do afterwards? It took
me a number of years before I went from being alive to living
again. You know?
Dr. Ronit Elk:
I think that's a beautiful thing.
Joanne:
The former being I just existed, and the latter being I started to
open up to the rest of the four-letter word called love. That took
quite a long time. And not just intimate relationships but just
all-around opening up to the universe again. It took almost five
years for me.
Dr. Ronit Elk:
What did you do to take care of yourself?
Joanne:
I took lots of baths.
Dr. Ronit Elk:
[laughs]
Joanne:
I remember taking a bath every day. I'm serious. I went to work, I
came home and I took a bath. You know, I was very bitter and angry
for a while. I felt so robbed. I felt just so robbed, which I know
is a narcissistic reaction, but I just was really closed down.
Dr. Ronit Elk:
Why is it narcissistic?
Joanne:
Well, like everything was about me, you know. Here this woman
died. But regardless, whether it was or not, I just was pissed
off! I was just really angry and I just felt robbed, you know. I
remember at her memorial service. There was like over 300 people,
and these people would give stories and say, I've known her for 15
years, and I've known her for 10 years, and she was all this, and
I just felt so envious of them, you know? I just felt so ripped
off, and so what did I do to take care of myself? I'm not sure I
did a whole lot at that time. It took me a while to figure that
out. I was just trying to get through the day.
Dr. Ronit Elk:
And the therapist, did you get to see her afterwards? Because
she's somebody who really helped.
Joanne:
Yeah, I did, and I was in therapy myself. I had an individual
therapist who, I guess that was probably the key in terms of
keeping me going. And there was--Wendy's therapist had really been
available. She had come to the house to see Wendy up until, the
very end, and she had also been very available to the family, so
there was that support and my friends. Wendy sang in a women's
chorus, and I didn't know any of those people but I met them
because during the eight months of her illness they included her
in their rehearsals, whether she was in the hospital and the
rehearsal happened in her hospital room or the solarium, or her
apartment or wherever.
Dr. Ronit Elk:
Incredible!
Joanne:
Whether she could be at the performance or not did not matter to
them, and these women became my support system. I am friends with
many of them today. So, you know, just very incredible.
Dr. Ronit Elk:
How did the doctors and the nurses and so on, how did they treat
you two?
Joanne:
Well, after taking a double-take--
Dr. Ronit Elk:
[laughs]
Joanne:
--those are two women lying in that bed, after that they actually
were very good, and I think that we were really fortunate.
Dr. Ronit Elk:
That's incredible.
Joanne:
Yeah, well I think a lot of it has to do with where we are in
terms of--I think Boston, Massachusetts is a great medical mecca.
They see a lot of things here and I think a lot of it probably has
to do with who we are and how we were together, which was pretty
comfortable. So they were really great. If anything, I maybe got
away with a little bit more because they would put a cot in the
room and let me stay over when she wasn't in a single.
Dr. Ronit Elk:
That's incredible, and that sort of thing is so important to let
other women know that it's possible.
Joanne:
It is possible. I mean, yeah, I had to ask for it, but they were
really good about it. The nurses were really very supportive. I
have to say from her neurosurgeon to the social worker, her
medical social worker was very influential in our lives, the
hospital social worker. So it was just, you know--we were
fortunate. We had a very positive experience. I'm not going to say
that there might have been one or two people that maybe didn't get
it. I mean, one time her brother and I tried to get in after hours
and they stopped us at the security desk and they said, "Who are
you?" And he said, "I'm her brother." And they said, "OK." And
then they said, "Well, who is she?" And he just looked at them,
and he said, "Well, she's our sister, of course." And he just
like, you know, it was like 10:30 at night and he didn't want to
get into it. We just went in. But, there was like one incident
where, on the phone actually. She was in a rehab and she was sick,
and I called and I had the flu and I couldn't get over there, and
they wouldn't talk to me because they had the emergency contact as
her mother, who at the time was in New York City, still living in
New York City. And they wouldn't talk to me on the phone. I knew
something was wrong because--I didn't know what it was, so I was
talking to Wendy, and she was having seizures. I didn't know it at
the time, though, and I would be talking to her and then she
wouldn't respond, and then she would respond.
Dr. Ronit Elk:
Right.
Joanne:
But I was on the phone. I didn't know what was going on. So I
paged the doctor, and he was like, "I only answer to so and so."
So I called her mother in New York, and I got her step-dad, her
mom wasn't home, and I told him what was going on, and they must
have called the hospital because that doctor called me right back
and apologized.
Dr. Ronit Elk:
Mmm! [laughs]
Joanne:
He said, "I'm so sorry. I didn't realize, and blah, blah, blah."
And he told me what was going on.
Dr. Ronit Elk:
Gosh, incredible.
Joanne:
And then I donned a mask and went and met her at the emergency
room. [laughs] He said, "She's having seizures. We need to find
out why, and we're sending her to the emergency room." But yeah,
that was one thing. And I don't know if, he was just like, if it
was homophobic or it was just, he didn't want all these family
members calling him, he just wanted one person. I don't know.
Dr. Ronit Elk:
I think it's pretty remarkable that her mother was so accepting
and so wonderful about it, and obviously convinced the doctor that
you should be talked to.
Joanne:
It was even more remarkable since Wendy came out to her mom three
weeks before she was diagnosed. And Mom's introduction to me was I
had to call her, she was on vacation somewhere, I don't remember,
some island, when we got the news of Wendy's brain tumor. I had to
call her mother and to tell her that she should probably come
back. You know, "Hi, my name is Joanne. You haven't met me but I
have really bad news."
Dr. Ronit Elk:
You know, you said something earlier when we were offline, that
was that you had been waiting for 13 years for someone to ask you
about it and to be able to share something like this. If there was
one thing you could tell other people who might be in this
situation some time in their life, what is it that you would tell
them?
Joanne:
That even when you feel so incredibly alone and like there is
nowhere to go, you're not alone. There is someone else who is
going through something or has gone through something similar.
There are people out there who want to listen, and that you will
get through it. It's OK not to know how you're going to get
through it. And that if you feel invisible at times, that's part
of it and hopefully that's changing. I mean, I think that one of
the things for me was, when I say I'm waiting for someone for 13
years, was as a caregiver, especially the same-sex caregiver--
sometimes you can feel very invisible, and just because you might
feel that way, know that everything you're doing counts just so
much and is just so valuable.
Dr. Ronit Elk:
You've said it all.
Joanne:
People asked if this was going to be painful, and I said, "This is
for me. This is a gift." Because I'm doing this for me, and this
is about me. Somebody asked me, so it's not painful. This is just
wonderful. It's part of my healing. So, thank you.
Dr. Ronit Elk:
It's been wonderful to talk with you.
Joanne:
It's been wonderful.
Susan's Story: Cancer Survivor and Lesbian
Widow
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Dr. Ronit Elk:
Also speaking with me today is Susan. She is 60 years old, and
unfortunately, she too had cancer. She is a cancer survivor, but
she is also a caregiver, and we will focus on both aspects of
Susan's life today. Susan's late partner, Joan, she lived with
bladder cancer and she had some really difficult health
complications for many, many years, 17 years, and she
unfortunately died in 2000 of a heart attack. Welcome to the show,
Susan.
 Susan:
Thank you.
Dr. Ronit Elk:
I know that you were also diagnosed with a cancer, renal cell
carcinoma? Which is a kidney cancer?
Susan:
Unfortunately, and that was three years ago.
Dr. Ronit Elk:
And that was the same year that your partner passed away?
Susan:
No, it was actually several years before that. Well, the day that
they found my kidney cancer, Joan was in ICU for another
complication that she had [laughs] and it took me a long time to
actually take in what was going on with me because I was so used
to what was going on with Joan, being what everything was.
Dr. Ronit Elk:
I can't even imagine. So, can you tell me a little bit about you
and Joan? How long you were together, just a little bit about your
relationship before she got ill?
Susan:
I actually met Joan shortly after she had had her bladder cancer
surgery in 1984, and she didn't live in the circle of friends that
I normally hung out with. So I didn't see much of her, and then
she moved back after she had her bladder cancer to Walla Walla
where her children were, and then we just happened to meet again
through a mutual friend, and after we had been together a while
she moved to Seattle and moved in with me and we were together for
15 years. So she had had the bladder cancer and she was diabetic
and she had asthma and some arthritis already when I met her.
Dr. Ronit Elk:
And so, can you tell me a little bit about--I mean, here she is,
ill, even though you were together for 15 years, but she was ill
when you met her.
Susan:
Yes. After she had the bladder cancer she went back for a while
to being a massage therapist, and we sort of had hopes that her
health would stay steady. We weren't lucky enough for that to
happen. So she had a few good years in there and then her body
just started to fall apart from many different things, mostly the
diabetes. It's so hard. That was what eventually killed her was
the heart attack, but the heart damage was caused by the diabetes.
But she had a urostomy and so--
Dr. Ronit Elk:
Can you tell our listeners what that is?
Susan:
A urostomy is where you have your bladder taken out and you have a
diversionary done so that you use a bag, an external collection
for your urine.
Dr. Ronit Elk:
How did she feel about it? How did you feel about it? It affects
both of you.
Susan:
Well, you know, it made no difference to me. It was pretty hard on
her. The appliances are frustrating at best. They don't fit right
and they are not made for people's bodies who have had numerous
surgeries, and so we had lots of frustrations with the equipment
that was available, but we were very active in the Ostomy
Association. And very well accepted as a lesbian couple.
Dr. Ronit Elk:
Tell me a little bit about that. I mean, how did that happen?
Susan:
Well, I think the fact that Joan and I were just out in everything
that we did. People just accepted us. I sat on a panel once at an
ostomy meeting as a spouse when discussed "Is there sex after
ostomy?"
Dr. Ronit Elk:
Wow! That's incredible. You must be very special people.
Susan:
Well, part of that is that older, round, gray-haired women are
considered to be asexual anyway.
Dr. Ronit Elk:
[laughs]
Susan:
So you can get away with a lot more that you couldn't when you
were 25.
Dr. Ronit Elk:
Wow, that's incredible.
Susan:
Yes, we've had at times, we had our picture in the paper for Gay
Pride as a lesbian couple.
Dr. Ronit Elk:
So you were out before you met Joan.
Susan:
Yes, I was out. I had another partner for two and a half years
before Joan came into my life. And then when Joan and I got
together, that was it. It was a wonderful 15 years.
Dr. Ronit Elk:
How was it, I mean the fact that she was ill? I mean, would there
have been a different relationship do you think if she hadn't been
ill?
Susan:
Oh yes. Diabetes takes over your life. You have to eat on time and
you have to eat certain things and you can't eat certain things
and you have to have this regulation. You can't argue with it,
you know.
Dr. Ronit Elk:
How did it affect you emotionally then?
Susan:
It was so hard, because when you become a caregiver it is hard to
also be a loving partner at the same time. Caregiving takes so
much energy.
Dr. Ronit Elk:
Can you give me an example?
Susan:
At one point she had surgery, she had emergency surgery and they
left her belly open, and I had to go in every day and swab it out
and re-dress it. For the month that it took for that to actually
heal, and so, I mean, I did a lot of physical, real physical care.
Later on she was in diapers part of the time.
Dr. Ronit Elk:
And I understand, but you said something that really caught my
attention, which is that it is hard to be a loving partner
because--
Susan:
You become more like a caregiver, and that's not an easy way to
have a romantic relationship.
Dr. Ronit Elk:
How did it affect your relationship? How did the illness affect
your relationship?
Susan:
I got more and more and more tired without knowing it. Some of the
best times that we had actually were spent in hospitals because
you're so close and it's such an intense environment, and we
didn't want it to be that way but you have little choice.
Dr. Ronit Elk:
So you were very close when you were in the hospital?
Susan:
Very close. You know, you're together 24/7.
Dr. Ronit Elk:
So you were able to stay at the hospital?
Susan:
I stayed at the hospital! The November before she died I worked
less than half-time.
Dr. Ronit Elk:
And so you were able to take time off?
Susan:
I was able to take time off. Everybody was really wonderful about
that.
Dr. Ronit Elk:
Oh, how wonderful! And how was the hospital staff about you
staying over?
Susan:
They all seemed very used to it. One of the things that we had
happen which was really kind of neat, one of the times she was in
a few years ago we had what we call the student doctors, the young
interns.
Dr. Ronit Elk:
Yes.
Susan:
We had a group of them come in. Joan delighted in sort of teaching
young interns things because she has been a massage therapist and
she knew a whole lot about bodies and stuff, and they never would
expect that of her. So we had a good time with them, but after
they left, a few hours later one of the young women came back and
told us that she was herself a lesbian and she had been so pleased
to see that the other doctors were very respectful of our
relationship after they were out of the room.
Dr. Ronit Elk:
Oh! How wonderful!
Susan:
Not just while they were there. And that, Oh! It helped her! You
know?
Dr. Ronit Elk:
Well, that's incredible. I wonder how usual that is.
Susan:
I don't know. We were in a Catholic teaching hospital. I had
pastoral visits from nuns, and I'm never sure if they really
understood about our relationship but they knew we loved each
other and that seemed to be enough for them. So that always felt
really neat. We had our favorite nuns. And we were two little old
Jewish ladies, so—[laughs]
Dr. Ronit Elk:
[laughs] Did they know that?
Susan:
Yeah.
Dr. Ronit Elk:
That's sweet that they did the pastoral counseling. How were your
families towards you? You mentioned that Joan had children.
Susan:
Joan and I each have four kids.
Dr. Ronit Elk:
Each?
Susan:
Each.
Dr. Ronit Elk:
Incredible!
Susan:
She has one daughter that took a long time to warm up to the idea
that Joan was a lesbian, and even now she is not real comfortable.
She was OK, but she didn't let her kids see her mom for a lot of
years, and so that was really hard.
Dr. Ronit Elk:
And your family?
Susan:
My family is all here in Seattle. I have three sons and an adopted
daughter and an almost adopted daughter who was our foster
daughter. They all seem fine.
Dr. Ronit Elk:
And would they come to the hospital to help?
Susan:
Yeah. The week before Joan died was her 70th birthday, and we had
a 70th birthday party for her with my family at the hospital.
Dr. Ronit Elk:
Oh! What did you do?
Susan:
Well, they brought in cake and ice cream and we just had a party.
Dr. Ronit Elk:
Did you and Joan ever talk about the fact that she was going to
die? That she might die?
Susan:
We did. The last three months she was in and out of the hospital
quite a bit, mostly in, and at one point she had been up on the
heart floor, and she had a really bad attack of something and they
had to take her down to the ICU. And our doctor said, "Joan is
very, very fragile. You need to talk to her about end of life
decisions." And so when they got her stabilized in the ICU, we had
the discussion about "do not resuscitate" orders and stuff, and
she signed the "do not resuscitate" order.
Dr. Ronit Elk:
How was it like for the two of you to talk about that after all
these years of being together?
Susan:
You know, it just seemed matter of fact. It really did. We talked
about everything. There was never anything we couldn't talk about.
Dr. Ronit Elk:
How would you describe your relationship? I mean, that sounds
very, very open.
Susan:
Very open, very loving, and, I mean, we went to her 50th high
school reunion together.
Dr. Ronit Elk:
Oh! How did that go?
Susan:
Oh, it was fun. I had a great time. I got to meet all of her grade
school and high school buddies.
Dr. Ronit Elk:
And to all of them you were, "This is my partner"?
Susan:
I was the spouse. We liked to use the word "spouse" because
"spouse" is a word everybody understands.
Dr. Ronit Elk:
Yes.
Susan:
And that's the word that we used at the Ostomy Association and
that's the word that they used for someone, you know, married
partner would be a spouse. We had such a good time. We did. No
matter how sick Joan was, we always managed to have a good time.
Hospitals are grim places, and all you have to do is find
something to laugh about, and we did.
Dr. Ronit Elk:
What kind of things did you laugh about?
Susan:
Oh, you know, we had a nurse one night who came in and piddled
around with Joan's urine bag and didn't snap it shut, and before
she had actually walked out of the room Joan and I were already
giggling.
Dr. Ronit Elk:
[laughs]
Susan:
[laughing] And, you know, it was like "Oh boy, is she going to be
in for a surprise!" And so we just did. We giggled our way through
a lot of it, because there isn't any point in crying your way
through it, I guess.
Dr. Ronit Elk:
I see that you have a very positive attitude, but surely there was
a challenge. So what would you say was the biggest challenge?
Susan:
Really the biggest challenge was to try and keep positive and
optimistic. In those last few years, most of the times that she
was in the hospital she got in the hospital because we had to call
911 to come. She bounced back so many times, and I really thought
she was going to bounce back again, and they kept telling us they
were going to let her out of the hospital that last time, and then
it didn't happen.
Dr. Ronit Elk:
How awful that must have been. How was that?
Susan:
It was just--I still am in shock. It's been 16 months and I'm
still in shock. I really didn't expect it. Even though I knew that
she was really sick and she didn't have very many bounces left in
her, I just didn't expect it, [emotional] so that's hard. I would
have done something different, although I don't know what I might
have done. I was with her most of the day.
Dr. Ronit Elk:
What do you mean you would have done something?
Susan:
Well, I went because I hadn't been working a whole lot and I had
found out just how much time I had missed the month before and I
was feeling really bad about it, and so I did leave and go to work
that day, and so of course we didn't know that was going to be her
last day, but I've always felt bad that I wasn't there with her,
and it's not a rational kind of thing.
Dr. Ronit Elk:
Of course.
Susan:
But we had a good friend that was there with her reading to her
that afternoon, and like she says, she didn't know when she left
that that was going to be Joan's last day.
Dr. Ronit Elk:
No one could know.
Susan:
But it doesn't make it easier, you know? None of those things are
necessarily rational.
Dr. Ronit Elk:
How are you managing now?
Susan:
Not very well. [laughs] I'm trying to learn how to live by myself,
and it's been a lot of years since I've done that.
Dr. Ronit Elk:
That's tough. Are you still working?
Susan:
Oh yes. Yeah, and that's really good. I'm actually getting to go
to Walla Walla this coming weekend for a conference that I
volunteered to go to so that I can go and scatter her ashes some
more. We did some last year with all the grandkids. Her kids and
her grandkids were there and we scattered ashes in a lot of her
favorite places, but we didn't make it to some of the places, but
I want to do that.
Dr. Ronit Elk:
So you're going to go there?
Susan:
I'm going to stay with a close friend of hers and see her daughter
that lives there and hopefully see her son that lives there. And
another daughter may come for the weekend. I've stayed really
close with two of her children. Her son just isn't around much for
anybody to be close to. He wasn't around when his mom was dying or
anything.
Dr. Ronit Elk:
And what about support? I mean, this is so hard to go through, let
alone you getting cancer, you know. Who took care of you? How did
you take care of yourself?
Susan:
Actually we have a good friend, who is now a very, very close
friend of mine, who came and took care of us for 17 days when I
had my cancer.
Dr. Ronit Elk:
Mmm!
Susan:
Yeah. Joan was just out of the ICU herself, and so she bathed us
and just took good care of us.
Dr. Ronit Elk:
That is a wonderful friend.
Susan:
We were very lucky.
Dr. Ronit Elk:
Well, it sounds like the two of you are very special people, so
it's almost like people gravitated toward you because of that.
Susan:
Well, Joan was very special, that's for sure! [laughs]
Dr. Ronit Elk:
Well, how was she special? I can tell you how you're special, if
you're not going to say it.
Susan:
Well, she was the kind of person that other people gravitated to.
She was very dynamic, and she had been a massage therapist and she
just had that special touch about her. Before I knew her, when she
had her cancer surgery she had a whole circle of friends that was
her care circle. Many of the people who didn't really know her
very well but were recruited, and I still run into some of those
people who were so impressed with her. She was just a very special
person.
Dr. Ronit Elk:
How did the relationship start? Who fell in love with whom, or how
did it--?
Susan:
Well, actually it's kind of funny. I met her in a synagogue and I
didn't know that she wasn't Jewish, because I'm Jewish and one of
her dearest wishes was to be converted, and every time she would
start to take a class for conversion then she would get sick
again. So the last summer that she was still alive, a friend of
ours got her rabbi certificate and she made it her job to make
sure that Joan became converted, and so Joan was able to go
through that, and she had a real, the whole orthodox conversion.
And so she died Jewish, which was one of her dearest wishes.
Dr. Ronit Elk:
Incredible.
Susan:
That was just the way the world was. People just wanted to see
that she got what she needed.
Dr. Ronit Elk:
And you? I'm just a bit worried about you.
Susan:
[laughs] Well, I'm in a lesbian grief group, and one of the things
that we have talked about is that it seems that all of us that are
really deep into this grief process had partners that we feel were
really very special people. Whether it's that they're special or
not, if you feel that way about them it's harder to lose those
people.
Dr. Ronit Elk:
Of course. Tell me a bit about the grief group.
Susan:
It's run by what used to be called Seattle AIDS Support Group and
is now called SASG. And they do a lot more things now than just
AIDS.
Dr. Ronit Elk:
But the grief group. These are other lesbian women who have lost
someone?
Susan:
Either a parent or a spouse. We meet once a week and we have
become a very close group, as you can imagine. And the woman who
leads the group led a grief group that I was in when my sister was
dying a number of years ago, and so I immediately felt very safe
with her, but I also know some of the other people in the group
that I knew before. It's a very wonderful group.
Dr. Ronit Elk:
I'm so glad that you have that, because I guess I'd be concerned
that you're so giving that you wouldn't take care of yourself.
Susan:
Yeah. I'm in a cancer support group that meets every other week
that meets at Cancer Lifeline.
Dr. Ronit Elk:
And how is your health at the moment?
Susan:
I'm basically healthy. I had a biopsy this last week for uterine
stuff and I'm sort of on pins and needles. I won't get the results
until I get back from my trip to Walla Walla. I'd rather know what
was going on. I am facing having a hysterectomy depending on
whether they find cancer cells or what they find.
Dr. Ronit Elk:
Oh, well I just pray that it all will be well for you.
Susan:
It's just a little scary. Once you get cancer everything is!
Dr. Ronit Elk:
Of course. And your kidneys?
Susan:
My kidney is fine. The other kidney works just fine. One only
needs one.
Dr. Ronit Elk:
[laughing] You have an extra one just for fun, huh?
Susan:
And the other part about it is with breast cancer and lymphoma and
with some of the other cancers, the treatment is so hard on
people.
Dr. Ronit Elk:
Yes, it is.
Susan:
And with kidney cancer they take out your kidney, and you don't
have chemo and you don't have radiation. So sometimes it almost
feels as if you're not, you know, you didn't really have cancer
[laughs] because everybody else had to go through all these
horrible things and you didn't.
Dr. Ronit Elk:
Well, Susan, I'm sure that you [laughing], a lot of people didn't
have to have a kidney removed either!
Susan:
Yeah, but it's a weird sensation. You know, everybody else talks
about all the awful things they have been through, and it's like,
well--
Dr. Ronit Elk:
You mean physically?
Susan:
Yeah. The kidney cancer, when and if it comes back, is God-awful
because you can't do chemo and radiation! [laughs] But the first
time around it's really nice you don't do chemo or radiation.
Dr. Ronit Elk:
Well, I see you've got a sense of humor.
Susan:
How else do you get through the world?
Dr. Ronit Elk:
[laughs] I'm going to ask you one more question, but before I do I
wanted to tell you that the Cancer Survivors Network also has--you
can have different support groups online. I see that you do have a
support group online as well.
Susan:
I have several. There is a lesbian cancer support group, and then
there is a National Kidney Cancer Association support group, and
that's where I got the really good information that helped me.
Dr. Ronit Elk:
Oh, yes, make the right medical decision?
Susan:
Make the right medical decisions, which is pretty amazing, because
I had state-of-the-art surgery that I never would have known about
if it had not been for the online stuff.
Dr. Ronit Elk:
Well, I hope that your friends and your support group will come
towards you. But before we end, I really do want to ask you one
more thing. If there were one or two things that you could say to
somebody else who may be facing something similar like this in
their lives, what would you say?
Susan:
Get support! And get the best doctors you can afford. That's
particularly true with things like kidney cancer, because it's a
very rare cancer.
Dr. Ronit Elk:
So what you're saying is, "Get support and get expert help, expert
medical care."
Susan:
I think those are two really important things. I just am so
grateful that I found the kidney cancer list right away.
Dr. Ronit Elk:
Yes.
Susan:
Through networking, you know.
Dr. Ronit Elk:
Right. You sound incredible. I'm sure you know a million people.
[laughs] I'm sure you know a million people. I've really, really
enjoyed talking to you.
Dr. Ronit Elk:
And the reason I gave you my first name before is because if you
go on the Cancer Survivors Network, each person gives themselves a
little name, whatever they call it, a nickname, so mine is Ronit.
So that's what I was going to say, that if you type in my name on
the Cancer Survivors Network, you will get to my web page.
Susan:
Ahh!
Dr. Ronit Elk:
And what I'm hoping is that you, too, will make a web page. It's
very easy. They sort of talk you through the steps. They have
little questions and you put little answers, and next thing you
know you have a web page.
Susan:
Wow! Lesbians tend to feel alone. It's like, I was in a straight
cancer support group when my sister was dying and I didn't have
any problem, but I know a lot of people who say "I don't want to
go to a straight group." Caregiving seems to be what I'm about in
some ways. I really don't want it to be, but that's what it seems
like some days that all I did was caregive, that all I know how to
do is caregive. I have to learn, you're right, to take care of
myself.
Dr. Ronit Elk:
Don't worry. It took me a hundred years to learn that.
Susan:
I can learn anything.
Dr. Ronit Elk:
Fantastic.
Susan:
Anyway, it was very nice.
Dr. Ronit Elk:
It was wonderful to talk to you.
Rebeca's Story: Grieving for a Lost Life
Partner
|
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Dr. Ronit Elk:
This evening I'm speaking with Rebeca, who is a 50-year-old former
caregiver from Atlanta. Unfortunately, Rebeca's partner, Sherry,
passed away in the fall of 2000. She actually had metastatic
breast cancer for several years. Hi, Rebeca.
Rebeca:
 Hey,
how are you?
Dr. Ronit Elk:
I'm sorry to talk about such a difficult thing.
Rebeca:
Well, I'd like to share my experience as much as I can so that
hopefully it will be helpful to someone else.
Dr. Ronit Elk:
That's really, really nice because it is very difficult. Was
Sherry diagnosed in 1997?
Rebeca:
Yes, she was diagnosed in November of 1997. At the time she had a
lump and it had already metastasized to her lymph nodes. She had
what was at the time a brand-new procedure called a sentinel
biopsy. Where they put dye into lymphatic system and the lowest
lymph nodes are removed and tested. And of the seven that were
removed from her, three came back positive. She only had a lump in
one breast, but she opted to do a bilateral mastectomy because she
wanted to, from the very first, attack it as aggressively as she
could. And so she had a bilateral mastectomy followed by two
different rounds of chemo and followed that with radiation. She
was declared cancer-free--well, she completed her treatment in
July of 1998. So it was about six, seven months from the time she
was diagnosed to the time she completed her treatment.
Dr. Ronit Elk:
And then did she go for a physical? Is that when they found
something else, or what?
Rebeca:
No, she had regular check-ups--went to see the oncologist on a
regular basis. I think we saw him, initially we would go to him
every month, and then it tapered out to every three months.
Dr. Ronit Elk:
Right.
Rebeca:
So she had regular check-ups, and in January, late January of
2000, she had been cancer-free for about a year and a half. She
thought she had scratched her cornea and she went to see the eye
doctor.
Dr. Ronit Elk:
So there was something wrong with her eye?
Rebeca:
Yeah. She was having trouble seeing out of her eye and she thought
she had scratched her cornea, and so she decided one evening to
call off work the next day and to go get this checked. She called
me from there to tell me that she had a tumor in the back of her
eye.
Dr. Ronit Elk:
Mmm.
Rebeca:
[emotional] And as you can imagine, it was quite the shock. And
she drove over to pick me up from work and we went directly to the
oncologist's office, and the cancer had recurred with a vengeance.
She had a rash that we had noticed on her initial incision from
the mastectomy, and we just hadn't been aware that that could be a
sign of a recurrence. We thought there was just some irritation
involved. She had a rash and she had liver involvement.
Dr. Ronit Elk:
Mmm.
Rebeca:
And I don't think--not lung, but definitely the liver, and the
eye. The concern was of course that she had brain metastasis,
which they never were able to find, and she immediately went into
chemo treatment.
Dr. Ronit Elk:
Again.
Rebeca:
And had radiation of the eye so they could reduce the tumor. The
tumor got pretty much blown away with the radiation, but she went
on a really aggressive form of chemotherapy.
Dr. Ronit Elk:
But this is now the second time.
Rebeca:
Yes, this was the second time. Yes. And it was a very aggressive
form, because in November of '99, a couple of months before, she
had gone for a physical, and the internist had noticed something
odd in the liver and had wanted it checked out. It turned out to
be nothing, and Sherry was very, very anxious about that whole
procedure. Then two and a half months later the cancer had spread
pretty widely throughout the liver. She died just short of her
46th birthday.
Dr. Ronit Elk:
That must have been unbelievably hard.
Rebeca:
Yeah. Because she died--my mother had been diagnosed with
pancreatic cancer--at the end of December, and she actually died
on my 47th birthday. And nine months to the day, Sherry died.
Dr. Ronit Elk:
Oh, that is hard.
Rebeca:
[emotional] So it was quite a year.
Dr. Ronit Elk:
I think I shared with you about my family, losing both my father
and mother within a few months of each other, and then my
husband.
Rebeca:
Yeah. But you know, in a way, this is hard to say, but my mother's
death helped me get through Sherry's. [emotional]
Dr. Ronit Elk:
How is that?
Rebeca:
Well, you know, I had always imagined that I would not do well at
all after my mother died, and I was still standing.
Dr. Ronit Elk:
So you knew you could do it.
Rebeca:
I could still take care of Sherry. I was still standing.
Dr. Ronit Elk:
So you knew you could do it. Can you tell me about you and Sherry,
like how long you had been together?
Rebeca:
We got together in, we met in May of 1981, and we moved in
together officially about a year later, and at the time that she
died we had just had our 18th anniversary, I think it was.
Dr. Ronit Elk:
Oh.
Rebeca:
We had a real good relationship and [emotional] she was the love
of my life. We were going to grow old together, and had just spent
some time really evaluating our lives and where we were at, and
had made some basic decisions about how we wanted to live, and we
were on a roll, so to speak.
Dr. Ronit Elk:
How did it change when she got the cancer?
Rebeca:
Well, we both--Sherry's way of coping with the disease was to
fight it and to be absolutely determined and convinced that she
could beat it.
Dr. Ronit Elk:
She was very optimistic in one way.
Rebeca:
Very optimistic and very much, "I am going to beat this thing.
This thing is not going to beat me." Going through the first round
of chemo and the mastectomy and all of that it was like "This is
what we have to do", and we just hunkered down and did it and then
went back to our normal life. The oncologist at the end of her
treatment was very, very optimistic and said to us that he didn't
see why Sherry couldn't live a full productive life. I think part
of his optimism was based on how well she handled the chemo. She
was a long-time runner, had been running for many, many years.
Dr. Ronit Elk:
So she was very fit?
Rebeca:
She was very fit, and she was able to continue, she was absolutely
adamant about continuing to run while she was having the chemo
treatment, and she did that. She didn't run the way she had
before, with the consistent--but she definitely kept running. When
the recurrence happened, I think that's when it really sank in
that she was fighting for her life. I don't think that either of
us expected it to come back.
Dr. Ronit Elk:
Were you able to talk about the possibility of her going?
Rebeca:
She did not want to have any negative, negative energy around her,
so it made it very difficult to talk about what would happen if
she died, and it was just an area that she couldn't go. She
couldn't go there.
Dr. Ronit Elk:
So who did you talk to? How did you cope?
Rebeca:
How did I cope? Well, I deferred to her wishes, and I did
participate in a lesbian support group that is here in Atlanta.
Most of the women who were in that group were partners and came as
a couple, but I came on my own because Sherry didn't want to do
that. We also did some couple therapy after the recurrence because
I insisted on it. Sherry did very little therapy throughout her
illness. She just didn't want to talk to someone about it. She
was going to beat this thing, and there were certain things she
wasn't willing to do. One of them was do therapy. She didn't want
to do therapy.
Dr. Ronit Elk:
But you said she came with you.
Rebeca:
She came with me, and working with our therapist she did go to a
special psychologist that specialized in dealing with anxiety and
fear, because she had a lot of that. The therapist suggested that
she make an effort, that this would help her if she could figure
out ways to control her anxiety or to minimize her anxiety. So she
did a little bit of that, but that wasn't until she was probably
within six months of dying. So, I think in a way you're caught
between a rock and a hard place, because you understand, or at
least I understood, and all of those around Sherry understood that
she wanted positive energy and that she needed that in order to
keep her spirits up, but the down side is that many of us didn't
get an opportunity to have a conversation with her where we
basically said goodbye. [emotional] And that was very difficult.
Dr. Ronit Elk:
Were you with her?
Rebeca:
Yes. I was with her when she died. [emotional] Yeah. She had had a
real bad day. The oncologist had come in and had told me that she
wasn't going to make it, and they came in and gave her a dose of
morphine.
Dr. Ronit Elk:
Yes.
Rebeca:
They put her on a morphine drip and she lasted a day and a half.
The Friday that she died we had a huge number of people at the
hospital, and finally right around 10, 10:30 everyone left and
went home except for a core group of people that stayed with me.
They insisted on staying, and I laid down with her on the bed
[emotional] and told her that she could go. She died about 15
minutes later.
Dr. Ronit Elk:
You gave her the gift of not having to fight any more.
Rebeca:
Yeah. I told her it was OK to go, you know, that she could go if
she needed to. It was pretty amazing that she took me up on it.
[laughs]
Dr. Ronit Elk:
Because being such a fighter.
Rebeca:
Yeah. Yeah. The day before she got the morphine drip a friend had
come by and she said she had started chemo treatment again that
day, and she told the friend, "I'm using the next quiver in my
arsenal" or "next quiver in my bow". So she was definitely going
to keep fighting it. The only reference we had made to her
impending death was we had made arrangements as to where she would
be buried and that should take place, and the rabbi came and had
that conversation with us. But later that day I was saying, "I'm
just really scared, and what happens if you die?" And she said, "I
don't think that's going to happen, Rebeca." So she was pretty
much fighting going until the very end.
Dr. Ronit Elk:
So how did you deal with this afterwards, because it's not like
you had a whole lot of closure in a way of talking about it. I
mean, it was wonderful that you were able to be there with
her.
Rebeca:
I have many wonderful friends, and I have very supportive family
and very supportive community. I was able to continue going to
therapy. I have depression, and so I have been able to continue my
medications and talk to my therapist and follow up on that. I
didn't have to worry about finances immediately, so those things
helped me get through the initial part. After someone died and
you're the executor of their will and also their last partner, you
get to be in widow mode for a while. You've got to take care of
all the details of wrapping up someone's life, and so that
sustained me for a while. It gave me focus. I kind of had a
script. I've got to take care of this and I've got to take care of
that. Do this, do the other, and so that helped. I have my
congregation that has been a source of comfort. I think part of
it, was that I was exhausted.
Dr. Ronit Elk:
Of course!
Rebeca:
Because for three years I had lived with--you know, at the time
you're going through it I don't think you just realize what toll
it takes on you. I remember shortly after Sherry died people would
comment on how good I looked and how wonderful it was to see me. I
think part of it was the anticipation that, what they would feel
like, and they didn't see physical evidence that I was completely
falling apart. So I think that was reassuring, and the other thing
was that I wasn't exhausted.
Dr. Ronit Elk:
Right.
Rebeca:
Because I had lived at the hospital for a month. Sherry got
admitted on September 11th, and she left the hospital on a gurney
on October 6th. I was there all that time. So I think now is more
difficult.
Dr. Ronit Elk:
That's what I was going to ask you. How is it now?
Rebeca:
[emotional] Much, much harder. And people said that to me, it's
easier at first. It gets harder later. And they're right, because
now Sherry's life is over and essentially all the loose ends are
wrapped up. People miss her but they have adjusted to life without
her.
Dr. Ronit Elk:
And you're the widow who is left behind.
Rebeca:
Yeah, and I'm left here having to figure out what to do with the
rest of my life, and it doesn't feel very good or very fair.
Dr. Ronit Elk:
It isn't fair.
Rebeca:
I've had a lot of anger and just "why me?" kind of. Why me, why
now, and what do I do with all of it? I have my life, thank God,
but sometimes I feel guilty that I'm so angry, because at least
I'm alive. But I keep thinking, "Gosh, Sherry. You got the good
end of this deal."
Dr. Ronit Elk:
Right, because you were the one left?
Rebeca:
Yeah. I wouldn't wish this on her or anyone else, for that matter.
You don't want to be the one that's left behind, but yet so many
of us do, and we manage somehow. But it's not easy.
Dr. Ronit Elk:
It really isn't.
Rebeca:
I think one of the things that I would love to see happen is more
support groups for caregivers, both when they're doing the
caregiving and afterwards. I think perhaps it's even more
important afterwards because there is--in a way anyone survives
the death of a partner to cancer, they are cancer survivors,
too.
Dr. Ronit Elk:
I totally agree!
Rebeca:
They have survived it, too.
Dr. Ronit Elk:
Yes. You're absolutely right. I think that it's really a painful
and terribly difficult thing to talk about, especially when you
love somebody so much and they're gone, and I really appreciate
your courage and agreeing to talk about this. Because I know that
somewhere out there there is somebody else who will hear this and
feel like she is not alone.
Rebeca:
I'm sorry I wasn't more composed.
Dr. Ronit Elk:
Why should you be? Just be yourself. This is a very--it's just so
hard.
Rebeca:
It is, but I wish I could have been a little bit more composed. I
hope that people who listen to this don't get scared away by the
emotion of it.
Dr. Ronit Elk:
I think that people who have gone through this understand the
emotion of it.
Rebeca:
Yeah.
Dr. Ronit Elk:
I think that part of it is that so few people who can understand
it, and so by hearing you that they'll feel that they're not
alone.
Rebeca:
Yeah. That's true.
Dr. Ronit Elk:
Well, thank you very much for your courage.
Rebeca:
Well, thank you for asking me to participate. As hard as it is, I
think it's therapeutic to talk about it.
Dr. Ronit Elk:
This is Dr. Ronit Elk, and I hope that these candid conversations
will help you think about some of the issues that come up for you
that you will be facing in your own relationships when you take
care of somebody who has cancer. I think that some of our guests
have shared so much, and I want to thank each one of them for
sharing a part of themselves, and particularly for giving some of
their wisdom that we can carry with us along the way. I encourage
all our listeners and our readers to check out other discussions
and personal stories that are available on our website at www.cancer.org and also on our
toll-free telephone line at 1-877-333-HOPE. Let me repeat that. 1-
877-333-HOPE. For the American Cancer Society Cancer Survivors
Network®, I'm Dr. Ronit Elk, wishing each of you a great day,
today and every day.
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