Matinum

Taking Charge of Your Health


[MUSIC] There’s some interesting history regarding
this particular retreat that we refer to as the metastatic couples
retreat. For more than a decade, I’ve been
conducting survivor retreats for women stage zero to three and we’ve been holding
them here at this facility. [UNKNOWN] Spiritual Center, a very relaxing environment, very peaceful
environment. But I would get emails from women, some I
knew, some I did not, saying, when is the
retreat for me? I have metastatic disease.>>When I’d throw my little pity party
or whatever at the beginning, you know, and I had that moment of, why is
this happening to me, you know. Why does this have to happen to me? I’m young. I have Two young kinds. Why do I have to be the one going through
this? And his response was, it’s not happening
to you. It’s happening to us.>>One of the biggest things that
they’re worrying about as they continue to travel forward recognizing
that eventually they will die of this disease.>>I think I was in denial. That it’s, that it can’t just be cured and
be over with. And I know it’s a, it’s a long road ahead.>>I think that’s both our best way of
coping with things is through humor which really throws the
doctors off and the nurses. And friends. You know, because yeah, a lot of them say the same thing like you’re always happy,
you’re always smiling everything was great, you know,
you look like you just lost a bet and shaved your head.>>Some of the activities that we
provide for these couples is an opportunity for them to candidly speak
with others in the same situation they have. So we actually break the couples apart. We’ll have women only in one room, men
only in another room. I think that the men only is one of the most powerful things that we do at
this event. Men are thirsty to find other men in the
same situation. There is a sense of relief when they hear
a husband say, this is how I’ve been dealing
with this. I get in my car and I scream and cry and
curse. And to find out that all of them get in
their car and scream and cry and curse. That they’re not alone.>>You never do fully recover. There’s always the new normal and then
they start coming at a faster pace so as time goes on, it’s taking away another
chunk of the life you have together. And of what your wife used to be able to
do.>>It’s harder and harder to see a
positive future.>>And then in bringing them together,
it’s who feels comfortable in talking about any of those candid
discussions that took place in the men’s only and women’s only room,
and one by one People around the room do speak up
and, and do share.>>We talked in our group about the
loss of hair being, you know, something that
people lose their public face. But I’ve lost my public face and body and
who is that person? It’s, I don’t recognize her. Well, I know it’s inevitable but it’s hard
to, to believe that I actually have it in my bones right now
because I feel so good.>>Right now I feel like I’m responding to treatment so well that it’s almost
miraculous.>>I don’t want them to feel like I
gave up. You know what I’m saying? I want them to always think that, no
matter what I fought for them, you know? I’d say that my biggest fear is for my husband because, you know, at the end of it all, I’ll be dead. That will be easy. It is going to sleep I guess. I mean, I don’t know. And we have provided information about how
decisions are made and that physicians are not God, but also
that physicians are Hesitant to speak up and really give a
timeframe, even when in some cases they do know the
timeframe. Just as I mentioned, I can see how ill
some of these women are. I can guestimate how much longer they’re
going to be here.>>I am bedridden for most of the day
because of my pain and because of a great deal of
fatigue. And, I don’t know how close I am to the
end.>>It’s, it’s hard to face your own
mortality. The hardest part for me, I think, is
probably the kids. I have a two year and a three year old. They were 1 and 2 when I first got
diagnosed. And just not knowing if I’m gonna be
around to see them grow up, not knowing if I’m gonna be
around to even see them in kindergarten, you know, not knowing if
they’re gonna remember who their mom is at the end of all this That to me
was hard. You know I just, I don’t want them to, to
forget me. One of the things that we did in the
women’s only group was that I talked about women considering
getting cards for their children. Going to the store asking the store
manager or their card store and say I’m going to succumb to this disease
and I need your help. I want to select birthday cards for my
children up through age usually 21 when my child goes to communion for the first
time, I want to have a card for that. When they get married, when they have
their first child. And writing in those cards, what do you
want to tell your child on that day. Is a very powerful way to still be here
instilling your values in your children. We also have some, some other sessions. Looking at, some private moments. Having a massage. Having Reiki therapy. We also play the almost newlywed game,
which is a lot of fun. We’re also going to be out on the
labyrinth today. We have a beautiful stone labyrinth here. One of the interesting things when we do
this for couples, we send the wives in first and then wait a few minutes
and then send the husbands in. And at some point on the path and it’s a
very specific walking path that you do, the
husband and wife will meet. And how they interact with one another,
whether they just brush by Whether or not they stop and hold
one another, whether they stop and sob with one another
to me is a very strong symbolization of their
love for one another. [MUSIC] We also will have this afternoon the
creation of memory ships. And what this entails is each of the
patients will be given a vase in the, in the shape of a hurricane lamp, and it has blue and green sea glass mounted all over the
outside. The vase is white with, sand and then
embedded into that sand are seashells. They will be given a journal. A pink journal. And stones, pebbles, smaller rocks,
seashells and sea glass. For them to use today as well to take home
a supply of And I will ask each of them to go back in time, as far back as they can remember, what was their first
happy memory. I want them to record that in the journal
and then select one of these objects to then go in this vase which I tell them
represents them. This vessel is a symbolization of them and
their lives. Our memories are something we hold on to. We take them with us. We also leave them behind, and it’s a
very, I think, a very powerful connection.>>It’s nice to have people that, that get it, you know, they understand what
you’re going through, they understand Even though
it’s not the exact same stage, or the exact same
disease.>>It makes me happy to be able to talk
about this, because it’s so wonderful that this is offered to people going
through things like this. I mean, I, I, I wish it was more [LAUGH]
More spread and closer to home and all of that stuff but it will
spread, you know, from all of us.>>I’ll be talking to them about the
fact that they have all been in shark [UNKNOWN]
waters. They come to John’s Hopkins, over to their
cancer center which is a safe harbor. So, we get them stabilized so they can set
out to more ports of, of call. But that one day, they will do a final say
on that they must do, alone. I will then give them on parchment paper a
verse written by Henry Van Dike, I always paraphrase that verse for them,
and the words goes like this. He talks about a family standing here on,
on this shore. And they’re at a dock and they see this
huge magnificent white ship in a dock. And they’re watching as her cargo is
getting loaded on, and they’re really admiring her size
and her grace. Cargo is done. The sails go up, the wind snaps the sails,
and she sets out of the port out into the
ocean. And they admire her even more in seeing
her now. So graceful, and she is going out further
and further out into the water. And they watch her as she is going out all
the way to the horizon line. And she gets smaller and smaller, and
smaller. Until then someone says, she’s gone. But gone where? She’s only gone from our sight. She’s just as large in Maston Hall as she
was when she was at our side, and just as able to carry her living
freight to her new and final destination. Her size has diminished in us, but not in
her. And as we stand here as family and friends
and say, there’s she’s gone. There’s family and friends on the other
shore sending up the flag shout, look here she
comes. It’s a very powerful way to discuss death and to see death in a more peaceful
manner. Every single husband who has attended
these retreats has used that analogy and will call me and say we
found out today that her sails are up or we found out that
she’s getting close to the horizon line. And then they will call me again and say,
she has reached the other shore and what time and who he
believes was there waiting for her. I am, do we have a prevention, true
prevention for this disease? I wanna make sure these women are not
forgotten survivors. [MUSIC]

11 thoughts on “The Only Metastatic Cancer Survivor Retreat of its Kind

  1. wow, this is an extremely powerful video, I'm sure it represents the program perfectly. Keep up the great work JHM

  2. Why have all of the people conceded death? My wife is given a 6 to 12% chance of survival. Someone is in that 6 to 12%. Why not her or any of these people? Yes they cant control it, but why would you give up when there is a chance? If you accept death, it will accept you. You can call me delusional but if i had a terminal disease, i would die with the attitude that i would be one of the few who live, without a doubt in my mind.

  3. I just came across this video and god bless you women. I am a 36 year old male who fell in love with a woman who had the brca gene.the shutting down of the body is a process

  4. God bless you women. I'm crying watching this. I'm a stage 3 survivor. And I also am aware that I could be a stage 4. This video is powerful. Thank you for having a program like this.

  5. Enriching information,especially as have had many relatives with cancer diagnoses. Watching as consider Pt. Navigator employment in Cleveland,Ohio. 3 August 2018.

  6. It would be awesome if there were more such meet ups for "4th stagers" who were told "We have bad news & worse news or you've got breast cancer and you're already metastatic from the get go, but hey look on the bright side, if they ever cure this you will at least get through it with your life and breasts intact for in your case, surgery may be out of the question."

  7. Very moving. The background music was not appropriate at some points I thought …..People don’t understand that stage four metastatic cancer Is not considered curable. So glad that there is a place for women who are dealing with metastatic cancer, it’s a very different reality than treatable disease.

  8. My mother had stage 4 throat cancer…..
    She had the surgery…
    Now there was a tumour in waist right side..
    That got removed 5 days ago..
    Now she will have pet scan tomorrow..

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