Blast Off!!

We have come, the darkness to expel

Fire and light, in our hands

Each of us, a tiny light

Together, we shine, mighty bright

(from a Hebrew folk song; my translation)

(traditionally sung on Hanukkah)

Whether it is one's focus, or just another one of life's challenges, cancer is discussed on-line in many different forums.

For me, the blogosphere best suits my needs.

When I was part of a group blog, I felt I had a powerful, virtual support group.

So, I decided to start a group blog that focuses on mothers living with cancer (as a chronic condition).

My goal: to gather at least ten bloggers to be part of our initial team. 

It turned out to be a bit more challenging than I expected.  But with patience, and a bit of perseverance, a new group slowly, and surely, began forming. 

My only requirement for joining the blog:  introduce yourself!

After that, the sky's the limit.

A few days ago, the tenth blogger joined our team.

We are ready to launch!

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We are quite an eclectic bunch! We are religious and secular, Jews and Christians, believers and non-believers, right wingers and left wingers, private and social, funny and serious. 

What do we have in common?

We are all young moms and we all have cancer that is not going to go away.

Oh, and one more thing:

We are all determined to live life to its fullest!!


http://motherslivingwithcancer.blogspot.com/


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Why Is That Funny?

On our way home tonight, tired and giddy, my kids and I were laughing about the whole cancer thing. (I know it sounds strange but, trust me, it was funny)

"What is a support group?" asked A.

Y jumped in and answered that my support group is "for women with cancer."

"Not just any old cancer," I pointed out.

"OK, women with breast cancer," Y corrected herself.

"Not necessarily breast cancer," I corrected her this time, "women with metastasis."

"What's metastasis?" A asked, still confused.

MD jumped in "cancer that is not going away."

It might sound like a heavy conversation, but it was really quite lighthearted.

I mentioned that, earlier in the day, my sister mercilessly referred to my group as "poor, sick people who sit around talking about cancer." Y, MD and I burst out laughing.

"Why is that funny?" A asked, even more confused.

"It's not," I answered, after a brief pause.... "which is why it is so funny!"

And we burst out laughing some more.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Support Group -- The Last Meeting

The last meeting. I thought everyone would be there.

But, this is a cancer support group.

E, P, Tz, and Y all could not make it because they were not feeling well.

There is a risk in a group like ours.

We all have metastasis. We are all living with cancer. And we are all battling cancer, in our own private wars.

As part of this group, we bear witness to each others' battles. We witness the wins. We witness the losses.

We all know, in the deepest recesses of our hearts, that we will face similar battles.

We all know, that eventually, barring a miracle, we will lose the war.

We lock these thoughts away.

We don't think about the final battles.

We live our lives and pretend we do not have cancer.

In our support group, we do not pretend. We talk about living with cancer, how it affects us, our families, our friends. We talk about the rollercoaster of ups and downs. We talk about our fears.

We laugh a lot. Sometimes we cry.

In our support group, some women are having a harder time than others. Some women are not doing so well.

At our last meeting, one women questioned: "is this good for us?"

I understand the question.

We try so hard to live as if our lives are "normal." Does it help us to expose ourselves to other women, whose situation may be worse than our own, and, therefore, force us to confront a future that we wish to ignore?

It is complicated. It is a package deal.

Clearly, we do think it is worthwhile, because we keep coming back.

Who else can understand what it is like to be living with cancer?

What is the alternative?

To handle this alone?

It is too much. It is too hard.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Support Group -- MASKS

"Well we all have a face that we hide away forever,

and we take them out and show ourselves when everyone has gone.

Some are satin, some are steel, some are silk, & some are leather.

They're the faces of the stranger, but we love to try them on"

-- Billy Joel, The Stranger

That Sunday, June 22nd, we made masks.

It was our third or fourth meeting, and only five women came: L, T, P, ? and me.

Despite the small group, or perhaps because of it, the atmosphere was conducive to intimate conversation.

It's funny; by making virtual masks, we revealed what lies behind our very real, albeit invisible, masks.

The facilitator brought markers, and feathers, string, and... sparkly pipe-cleaners.

I immediately chose a few sparkly pipe-cleaners and quickly cut them to size/shape: sparkly gold pipe-cleaners to line my eyes, and form my eyebrows; sparkly red pipe-cleaners to form round circles, for my cheeks. Then I lined the opening for my eyes with translucent green cellophane. I attached t'chelet (periwinkle blue) string to either side, to tie the mask over my eyes.

What does my mask mean? It's simple.

The pipe-cleaners represent my energy, and joy. They are the dominant features, and I want my mask to reflect that. The green cellophane represents the thin, almost invisible, layer that hides my eyes, so you can't look too deep, and see the pain that is within. The t'chelet strings represent the tears, that sometimes escape, despite the smiling veneer.

I wear my mask, so people smile when they see me.

I wear my mask, so people talk to me with joy.

I wear my mask, so people treat me like I'm going to live forever.

I wear my mask, because I like the way it looks on me.

I wear my mask, because that's what I want to see when I look in the mirror!



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Support Group & Simchas

It is hard for me to choose.... So I try to do everything!!

I am always trying to "dance at two weddings" -- thought they are not always weddings!

Monday night, I had my support group meeting at 6:00, in Bayit Vegan (not far from Sha'are Zedek) and a Bar Mitzvah at 7:00, at Shulchan David, on Mount Zion, next to the Old City.

I missed the last meeting of my support group, because of my terrible ear infection (which still hurts, but is improving.... SLOWLY). So, I really did not want to miss it again.

Even though I was running late (surprise), I arrived with the intention of leaving after an hour.

The group was small, but good: L, MC, E, Y, C and Me.

The topic of this meeting was “control.”

Both L and C had gotten some bad news that day, so we also dealt with some of the more difficult aspects of not being in control of our lives.

L and her husband were about to go on a 10 day vacation together. That morning, her doctor told her to cancel her vacation because she needs a small surgery, due to a new problem in her kidneys.

C also just found out that morning that her chemo isn’t working and the cancer is growing, significantly.

Apparently, chemo has not been effective recently for both L & E, and they are also anxiously awaiting news about what treatment to start next.

Y seems to be in constant pain as well.

The meeting was a bit hard, content wise, but it was also important, content wise.

I have a hard time coping with my illness, and especially with the lack of control over my life.

I am, B”H (Thank God), still in the beginning of my battle. My drugs seem to be working. My cancer seems to be stable. We have had a few scares, but, hopefully, the drugs I’m taking will work for several years, and I can stave off the anguish for now.

The rollercoaster is hard. The lack of control is really hard.

The fact that things probably will not get easier with time, is also hard.

Both E and MC emphasized their belief that we need to focus on living in the moment and enjoying all the brachot (blessings) that we have now.

I think it’s important to allow ourselves the space to be depressed. My approach is to limit my depression to a day or two (though sometimes it sneaks past the deadline), then to gather up my strength and focus on the positive. What else can we do?

I do think it is important to give ourselves the permission to cry and feel sad. Because, let’s face it, cancer is hard! (and scary)

The women in my group are really strong. They are all determined to enjoy life and make the best of a difficult situation. Nonetheless, it is good to have a place where we do not need to be strong all the time.

I did not want to leave the discussion in the middle. So, I stayed almost until the end. Then I rushed off to the Bar Mitzvah.

I arrived, anxious and out of breath, hoping that I would not miss the speeches (Yes, I actually really look forward to them!). Imagine my relief when I walked in and realized that everyone was still in the reception! (I even got to eat some of the delicious reception food)

What a fun Bar Mitzvah!! My friend AK, the mother of the Bar Mitzvah, danced so much! After the meal, she grabbed me to come and dance more!!

I love dancing!! Of course, I am limited, and dance a little like an old lady. I can't jump, hop or twist my hips too much. But I do what I can!!

At one point, I realized we were not enough women to create a sustainable circle. So I went from table to table, announcing: "A wants to dance; we need more women; please come!" Within seconds, we reached "critical mass"! We danced with unbridled ruach (spirit)!

I sort of want to justify my boldness by pointing out that I knew most of the people at this simcha. But, let's be honest, even if I had not, I would have done it anway!



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Support Group: Talking About Cancer....

I didn't want to meet every other week. "We will have cancer for years;" I pointed out, "it is better to meet once a month, over a longer period of time." Then I went to the first meeting... and couldn't wait for the next one.

Our second meeting focused on communication.

Our exercise: Creating Metaphors

Fill in the blank:

For me, talking about cancer is like _______________________.

P: bursting people's bubbles ("הפלנו עוד חללית")

T: a rope that binds [people together]

B: reading from a book, about someone else

C: removing a stone from my heart ("להוריד אבן מהלב")

L: a key that opens my heart
and also
a springboard to get to know myself better ("מנוף")

MA: a destroyer ("קוטלת") that leads to healing ("ריפוי"); talking destroys the disease

Y: like sitting on a beach, under a tree ("הקלה")

RivkA: having a job [working in hazbara; educating the world about cancer]
and also
getting rid of a burden (by sharing the burden with everyone around me)

I was actually surprised by my own answer. Not by the second part; that, I knew. But by the first part.

I had not realized the amount of energy I put into trying to explain/inform/reassure the people around me. I had not recognized that as an additional burden.

I expend a tremendous amount of thought into "the packaging."

How do I let someone know, without freaking them out? How do I gently explain that this is not a "short term thing", but a life time of dealing with cancer? How do I evoke understanding without sympathy? (empathy is fine, but I do not want people feeling sorry for me) How do I communicate that I want things to be "normal", even as I am describing how abnormal everything is?

How can I expect other people to make sense of this, when I can not make sense of it myself?

I have no answers, but I keep trying to find them.

Cancer is a tough item to "package".

For me, talking about cancer is like having a job educating about cancer.

On the other hand, the fact that it is out in the open, the fact that I can talk/cry/laugh/joke about it, means that I am not alone in dealing with it. Every time I talk/cry/laugh/joke about my cancer, I deposit a little bit of my burden on someone else's shoulders.

For me, talking about cancer is a way of sharing my burden.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Support Group -- Women with Metastasis

Sunday night, I attended the first meeting of a support group, for women with metastasis, at Beit Natan.

When I arrived, exactly on time (!), five other women were there (six, if you included the facilitator, a social worker who specialized is psycho-oncology, who I met at the Beit Natan retreat). (read more about the retreat here and here)

I already knew four of the women: TK, my friend from chemo; Y, who was part of my couples group at Ma'agan; P who is in my art class at Ma'agan; and L, who called me when I was first diagnosed, thanks to Beit Natan, to offer support (she has been calling and supporting me ever since). (Y, P, & L were also at the Beit Natan retreat).

Then E arrived; I recognized her from chemo. Then C, who I recognized from the retreat.

At 6:15, we were 8 women. After a brief introduction, M, the facilitator, led a short relaxation excersize, including a guided meditation. At around 7:00, two other women joined us. One came from work, and the other explained that she had chemo that morning and had to wait until her nausea subsided to join the group.

They were just in time for a "getting to know you" excersize. M placed about 50 cards on the table. Each card had a stylized pair of glasses. Each woman chose 2-3 cards, to represent how cancer affected/changed us.

I chose:
* a pair of glasses with happy masks -- to represent how I want to appear, and how I want other people to respond to me; also to represent the effort necessary to be happy (something that used to come so easily, with no effort at all...)
* a pair of glasses with two figures, freely dancing -- to represent my love of dancing, and the fact that I can no longer dance; I will never realize my dream of going Israeli dancing with my daughters, and I can no longer really dance at weddings and simchas (I can do the "old lady" thing and dance without bouncing, but, even then, I am forced to stop as soon as my hip hurts...)
* a pair of glasses with yin-yang symbols -- to represent my search for balance, to do everything I can, without doing too much, and for seeing the advantages and disadvantages to every situation, even cancer.

By the end of the meeting, we were 10 women; ten mothers, most in their 40's, most with kids at home; some with kids younger than mine, others with older kids (some with both); all struggling to live our lives they way we want, despite living with cancer.

It was a good meeting.

I look forward to the next one.


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Living is the Name of the Game

Well meaning friends still offer to put me in touch with "someone else who has breast cancer."

Three years ago, all these offers were like lifelines. Speaking with other women helped me clarify how I was feeling. I listened to their experiences and identified what "resonated" with me. With each conversation, I better understood myself and, eventually, determined what was "right for me." I became part of a very large, supportive community; a comunity of "survivors."

Most women, who survive breast cancer, eventually get to "move on." True, we are never be the same as "before." We need more frequent check-ups; and we worry that the cancer will return. But, over time, the intervals between check-ups extend to annual check-ups, and the concern fades into the background. Of course, we all have our physical reminders. Our bodies are never the same. Yet, for most women, "cancer" ceases to be the defining element of who we are. And that is how it should be.

But that is not how it is for women with metastasis.

Many of us look "normal." We "pass" for healthy, functioning people. We want to pass. We want to be normal. But we are not "normal."

Every time someone comes up to me and says "You look great! So, are you finished with your chemo?", my stomach plummets. On the one hand, I am pleased to give the impression that I am fine. Because, in many ways, I am fine. On the other hand, I am not fine. I have cancer. I will always have cancer (unless we find a cure and/or God grants me a miracle). And I will always be on chemo. That is just the way it is. And I can live with that. That is the goal: to live with cancer.

When cancer becomes a "chronic illness," life does not "return to normal." "Normal" changes.

We all want to be normal, so we seek out other people like us, other people who are "normal" in the same way that we are.

Since my diagnosis, I sought out other women with metastasis. At first, I focussed on finding women who have been living with metastasized breast cancer for over ten years. It was difficult to find women like that. But, here and there, I found women who are living with it (1 year, 2 years, 7 years....). I reminded myself that women are living longer now, because of all the great new drugs, and forced myself not to be demoralized by the statistics. And I changed my focus. I realized that the primary cancer is less relevant at this stage. I needed to talk with other women who are simply surviving metastasis.

I still focussed on finding other young mothers living with metastasis. I need to talk with other mothers, who have young children, who are concerned with many of the same issues that I am, primarily regarding our children.

But there are other issues as well. Issues that only someone who is living with cancer can fully understand and appreciate.

Every once in a while, I want to be surrounded by women who are "like me." I want to talk, without explaining, without apologizing, without pretending.

I want to be with a group of women who are all playing the same game.

The name of the game: Living with Cancer.


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA