What Got Me Out of My Funk?

I was stuck.... for months. 

I just could not shake off that feeling of gloom and doom.

I had all sorts of good excuses reasons:  brain mets, radiation, exhaustion, Bar Mitzvah preparations, family leaves, summer ends, school starts, chagim, flu for weeks.... 

Whatever the reason, I was in a funk.

And I did not like it.

Then, I read about the Middle East Breast Cancer Conference banning Israelis -- well, that got my blood boiling.  After some research, I posted about how Susan G. Komen for the Cure continued to support the conference. (I still owe you all a follow up post...)  Then, when I cross-posted to my former group blog, I got censored! -- that got my blood boiling even more!  I started researching, writing and FIGHTING for my principals. 

Susan G. Komen for the Cure was purposefully misleading the public, and betraying our trust.  I spent hours researched the facts, so I could expose the truth. 

At the same time, women from my group blog, who I thought were my friends, treated me with such disregard and disrespect!  I was so hurt, and so angry.  At first, I tried to show them what they were doing, but their disdain obscured all logic.  No one rose to my defense.  And, when I left, only a few chose to continue their contact with me.  For almost two years, I had deluded myself into believing that these women cared and supported me.  I was furious about their deception, and my own naiveté.

I was fuming over these two injustices.

I had no time for self-pity, and no patience for anything else.

I was Don Quixote and I had my windmills to fight!

After a week or so, I had to put these issues aside.  I was still burning with righteous indignation, but I did not have time to succumb to my fury.

I was no longer feeling lethargic and apathetic.

I had things to do, and I was back on track!



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

With love and optimism,
RivkA

New Blog for Women/Mothers Living with Cancer

Way back when (about two months ago), when I got censored and forced out of the group blog for mothers with cancer, one of the women on that list suggested that I start my own group blog.

Well, I finally took her up on it and am starting a group blog, for mothers living with cancer.

All women facing cancer are welcome to join, but the blog will focus primarily on mothers who have advanced breast (or other) cancer -- i.e. we will be living with cancer for the rest of our lives or until there is a cure.

Anyone interested in joining, should contact me at:
coffeeandchemo@gmail.com

Anyone interested in reading the blog should visit us at:
http://motherslivingwithcancer.blogspot.com/

Hope to be up and running in a week or two!



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

With love and optimism,
RivkA

Mothers with Cancer - Saying Goodbye

To understand, first please read about how I was censored.
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Mothers with Cancer finally approved my farewell post, four days after I submitted it.

The post itself is rather benign.  Obviously, if I had written my reasons for leaving, the post would not have been approved.

Meanwhile, the comments are interesting, and not at all benign. 

I wonder if the blog administrators are going to start blocking comments as well.



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

With love and optimism,
RivkA

Let "Mothers with Cancer" Know What You Think

I used to be a proud member of a communal blog for Mothers with Cancer. I was happy to share my experiences with a wider audience and, in that way, to help more young mothers who are coping with chronic cancer.

That was before I was attacked and penalized for writing something politically incorrect. My post was pulled and my status changed (details below). Future posts, by me, would be censored.

Occasionally, there have been political posts on the blog and that bothered me. I felt these posts to be divisive. I was particularly put off when, following a left-wing (pro-Obama) post, I posted a counter opinion, and my post was pulled. After I made an issue about the hypocrisy, the original post was pulled as well.

Recently, members of the blog wanted to discuss the new US health care reforms. I again objected, as I felt the issue could be divisive and alienate mothers. As there are plenty of forums for discussion the politics of cancer, I felt that our communal blog should be a place where we just stick to posting about mothering and cancer.

It was decided that as long as authors identified themselves, and wrote a disclaimer ("this post represents the sole opinion of its author"), then political posts were acceptable.

I disagreed, but I was outvoted (though there was no official vote).

So, recently, I posted according to the rules about the about the Susan G. Komen for the Cure Middle East Conference on Breast Cancer, and the compliance of Komen for the Cure in the boycott of Israeli participants.

I received one comment "This is very disturbing news to hear. Thanks for letting us know."

Then my post was pulled.

I received this letter:

It is with deep regret that I must tell you that I have pulled your latest blog post, entitled "Some People Hate Jews More Than They Hate Cancer." The content is inappropriate for our blog, in that it can be viewed as confrontational, divisive, accusatory, not directly on topic of mothering through cancer, and contains statements defaming another cancer support organization that, in fact, have been refuted by the other organization. This post opens us up to being sued for libel, among other things, and that is something that I cannot risk. Since we are not an incorporated nonprofit body, any lawsuit could be brought against all the members of the blog, and I will not allow that to happen to the other 22 mothers with cancer that write for this blog.

As a result, your account status has been temporarily changed to a "contributor," which means that future posts must be approved by an administrator before they are posted.

I am truly sorry to have to take this action, but I must put the welfare of the group above all other considerations.

I was in shock.

First of all, I followed the guidelines: I identified myself and I qualified my post.

I can also verify my claims. I did my homework before writing the post. I have been in touch with the foundation, as well as several other sources. At this time, I have even more information (which I will post soon) confirming these facts.

To claim that I put the group at risk for “being sued for libel” is completely ridiculous. Not only is there no malicious intent (a necessary condition for a libel suit, along with false information), but I can verify my claims, which are all true.

The objection that the post is “not directly on topic of mothering through cancer” would equally apply to the US health care reform plan, but the latter is an acceptable topic for the blog.

Any political post is, by its nature, “divisive.” There are at least two sides to any controversial issue. Any view opposing an injustice, can be termed “confrontational” or “accusatory.”

It is only partially true that the post "contains statements defaming another cancer support organization that, in fact, have been refuted by the other organization." Komen for the Cure denied the statements, but did not refute (i.e. disprove) them. I can verify my claims, they cannot.

Check it out yourself. Several Israelis were initially invited and scheduled to attend. Ask Susan G. Komen for the Cure for the name of ONE participant from Israel. I have asked them for this information several times. They cannot name a single Israeli participant, because there were none.

Not only did Komen for the Cure enable the boycott, but they continue to blatantly deceive the public about this issue, both on their website and in response to email queries.

These issues, both the boycott and the deception, really bother me. They are so important, that I blogged several posts about them and plan to post more.

I thought the issues might interest/concern other moms with cancer. That's why I posted to our communal blog.

Apparently, this is information that the managers of the blog do not want people to know.

Clearly, only one type of political thinking is acceptable on the Mothers with Cancer blog.

Other opinions are a “danger.”

Well, no one need fear my dangerous opinions anymore. I won’t be posting them on that blog anymore. I suspect no one else will either.

After all, that’s what happens when free speech is curtailed. People who want to remain on the inside keep their mouths shut.


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I posted a benign farewell post to the group, but the moderators of the group did not even have the courtesy to post it.



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

With love and optimism,
RivkA

Mothers and Daughters

Don't miss my public survey about cellphones -- Please contribute your opinion!!
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Today, I received a real gift -- special time with my youngest daughter.

Beit Natan sponsored an outing for mothers and daughters. My eldest was too busy -- she works as an assistant teacher in gymnastics on Wednesdays and she had a rehearsal for an upcoming play. My youngest was happy to come, and even missed her gymnastics class to spend the time together. She really loves gymanstics, so this is a BIG deal!

About twenty mothers and daughters met in the Aminadav Forest and participated in a program run by Etgarim. Two years ago, as part of Beit Natan's Summer Retreat, I participated in the Etgarim program for the first time. It was very challenging for me on multiple levels. In particular, it was the first time that I really came face to face with the physical limitations that cancer has imposed on me. You can read more about my experience here.

I had a very different experience this time.

Our first exercise was to cross the "rope bridge" (one rope to walk on and one rope to hold with both hands). Unlike two years ago, when we crossed alone, this time we would cross the bridge together with our daughters.

My daughter led the way, slowly, weighing down the rope just enough to make is easier for me. She stayed just a pace or two in front of me and really worked with me. I already knew how to guide her, and she took the instruction well. Once or twice I did need to ask the madricha (counselor) for assistance, but mostly we managed on our own. I don't think my daughter realized just how much she helped me.

It amazed me how naturally my daughter took to the ropes. She was completely comfortable and unafraid. She could travel and turn around on the ropes with ease. Towards the end of the bridge, she decided to have some fun and started bouncing up and down on the ropes. This was not fun for me. She thought that was very funny. I told her she was mean. She thought that was funny too. We had a good laugh together!

Afterwards, there was a group activity, on a different set of ropes. These ropes were set up such that one person was lifted to a top rope by two groups of women and girls, pulling two ropes from opposite directions. Then one group of girls had to pull extra to bring the person who was lifted to their side. This activity required the group work together as a whole.

At first, the madricha said there would not be time for more than one person to be lifted. All the daughters really wanted to be lifted, including mine. Several of the women were also interested, including me (no surprise there). My daughter, who is usually so quick to be mevater (acquiescing), told me quite strongly that she wanted to do this even more than she wanted to do the previous activity. So I joined the chorus of mothers who were appealing to the madricha to at least give all the daughters a turn.

In the end, all the daughters did have a turn to be lifted by the group and I was lucky to have a turn as well.

During both exercises, participants wrote notes to be dropped in a bottle at the end of the exercise. The first note: what we wish for ourselves during the coming year. The second note: what we wish for our daughters/mothers for the coming year.

What I wished for myself: health, less fear, an organized home, serenity at home, and energy.

After we finished the exercises, we sat in a circle for a short summary session. During the discussion, I noticed that many of the daughters had "run ahead" of their mothers while traversing the rope bridge. My daughter was really exceptional in that she really traversed the rope bridge along with me. She could have easily run ahead of me, but she did not. She chose to cross slowly, at my pace, so we could do it together.

I also realized that "crossing the bridge" is an analogy for children living with a mother with cancer -- some parts are easier and some parts are more difficult. During the difficult parts, we have to stick close and work together. During the easier parts, the children feel freer to go a little wild (like jumping up and down on the ropes).

It was a fun activity with a meaningful message.

Afterwards, there was a delicious Bar-B-Q dinner. The food was really good and I ate more than I have eaten in a while!

We sat with two other mothers and daughters (15 year olds). A journalist, who was there to cover the event, joined us. I found it fascinating to hear my daughter's answers to her questions.

My daughter's insights and maturity were impressive for one so young. She answered questions thoughtfully and openly; she is not usually so candid about how she experiences my cancer. For me, this was perhaps the greatest testimony to the power of this event.

I think it was also good for her to hear the answers of the other girls.

After dinner, the group gathered for singing. I love singing, but I could not stay. I had to leave early to get to the aseifat horim (parent's meeting) at my eldest daughter's school.

To my surprise, my daughter decided to stay. She did not know anyone before we got there. Yet she chose to stay for the rest of the program. One of the girls from our table (and her mother), promised to make sure my daughter got on the right bus to go home.

And then off she went. My baby. Finding her own way.



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

With love and optimism,
RivkA

Pesach Preparations -- the traditional kind

First, let me be clear, I only clean for Pesach. I do not do “spring cleaning.”

Second, I only clean the bare minimum. I don't worry about the dust or the clutter. I just worry about getting rid of chametz.

In the past, I spent a lot of time and energy getting rid of chametz. We used to completely rid our home of all things chametzdik (of, or having to do with, chametz).

Moshe does not believe in selling chametz and I do not believe in wasting food.

So, starting around Tu B'Shvat, I stopped stocking up and started working our way through our stores of food and condiments.

I also started contacting food companies to verify the sources of various ingredients. I needed to know, was the vinegar made from wheat or barley, or was it synthetic or make from something else? What about dextrose and dextrin? Were they made from corn, wheat or barley? I could keep the corn derivatives, since I can own kitniyot (even if I can't eat them), but wheat or barley derivatives had to be finished, given away, or thrown out.

Many companies assumed I was asking about gluten, so I had to explain that this was not a health question, but a religious question. It was an educational experience!! And it took time!

I used to check EVERYTHING!

Not anymore.

Ever since I started dealing with the cancer thing, I just can't do it. For a while, I still made the effort to contact companies. Not this year. I spent too much time feeling sick and tired.

Much to Moshe's chagrin, I have taken to selling our chametz.

I sort through what I can. We finish what can be finished. And then I just sell the rest.

So, in theory, I should really have a fairly easy time preparing for Pesach. I just basically need to clean and kasher my kitchen. Oh, yeah, and our extra refrigerator and freezer.

This year, we might not be home at all during Pesach. So, I am not even going to kasher my oven.

We are going to Moshe’s parents for Seder, to his sister’s for Shabbat Chol HaMo’ed, and to our good friends’ for Sh’vi’i L’Fesach (the seventh day of Pesach, with is also a Yom Tov).

But cleaning always takes more time than I expect!

Despite the fact that both girls helped out a lot, we did not finish in two days. (my son is off on three day tiyul (hike), so he got a "free pass" this year)

Sunday, we (read: my girls) cleaned the extra fridge and freezer.

Monday, all I wanted was to clean our main fridge and have everything put away. We did not finish.

Tuesday, I have chemo. I started to panic.

As I sat with my girls and discussed what they would need to do, my eldest jumped in and said "we can finish the refrigerator; we already know what to do."

There is still plenty of work that I have to do. I have to put everything away (the girls will help with that), and I would like to clean our stove, and kasher our grill (so we can take it with us and have a bar-b-que if we camp out).

We are still debating where to be, and what to do, during the 2-3 days of chol hamo'ed.

The kids really want to camp out. They also want to do some hiking and go to the beach.

If we go camping, I'll camp with the kids and Moshe will find somewhere more comfortable to sleep. I wish he liked camping, but he just does not.

I LOVE camping, but my body is not what it used to be. With cancer throughout my bones, I am a bit more sensitive about where I sleep.

I hope I am up for the challenge!!



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

With love and optimism,
RivkA

Slowing Down and Letting Go

Tuesday morning, on our way to the brit (see previous post), Moshe casually mentioned that he was "surprised that [I] did not get up this morning."

When I wondered why, he reminded me that our eldest left that morning for a three day tiyul (hike).

"You always used to get up with them," he continued,"even for a short, one day trip..."

He was right. In the past, whenever one of my kids had a tiyul (hike), I would get up early (no matter what the hour) and make sure they had everything they need (this is after helping them pack their bags and giving them treats the night before). Then I would remind them to be safe and stay close to the madrich (guide), give them a kiss and hug, and send them on their merry way.

I do not think I ever missed saying goodbye on the morning of a tiyul... until this Tuesday.

Tuesday morning's activities penetrated the fog of my sleep, but only ever so slightly.

I was too tired to wake up. By the time I finally opened my eyes and called for my daughter, they were gone. I felt a moment's disappointment before I rolled over and fell back asleep.

I did not know how to respond to my husband. I knew he was not trying to make me feel bad. And I knew that I did not need to feel bad. Moreover, I knew that my daughter would be fine (and that I had helped her with everything she needed the night before).

Still, I missed saying goodbye to her.



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

With love and optimism,
RivkA

ZAM ZAM

I recently overheard my kids discussing "zam zam." (rhymes with "mom mom")

"What's that?" I interrupted.

Apparently, that's what the Sheirut Leumi girls call Zichron Menachem.

A few weeks ago, we discovers Zam Zam's wonderful afternoon program.

Children are picked up, from their homes or their schools, and driven to Zichron Menachem's beautiful Center in Bayit VeGan, opposite Sha'are Zedek hospital. The program is for kids with cancer and for kids who have a sibling or parent with cancer.

I quickly discovered that at Zichron Menachem cancer is not the focus, it is just the common denominator. The Center is bursting with positive energy and excitement. There are volunteers everywhere, running in and out and all over the place!!

When the children arrive, they place everything they don't need in funky, colorful lockers. Even the lockers are unconventional, placed at bold angles. (I did not even realize these bright shapes had a practical purpose when I passed them in the foyer!)

The first hour is spent doing homework. Teachers and volunteers are available to assist the children with every subject.

The next two hours are spent in chugim (activities) and hanging out at the Center.

There is play room, open all afternoon, with a pool table, foosball, and all sorts of games. Downstairs, for special treats, they have a fancy video arcade! They even have my personal favorite, air hockey!!

There is also an amazing computer room, with enough computers for everyone! (open for just half an hour, with continual supervision).

At the end of the day, the children have half an hour to eat supper before they are whisked back to their homes!

What a gift!!

MD and A go on Thursdays (my chemo day). Now, I relax during chemo, and also when I get home, knowing that my kids are being picked up from school (I used to pick them up on Thursdays), getting help with their homework, participating in chugim, and eating supper. (Though, they usually eat again when they get home. At least, they are not starving, and we can sit down and eat nicely together and spend the time catching up!)

My children all wanted to learn a musical instrument, so my youngest daughter chose to study guitar and my son is learning both guitar and keyboard!

What a fantastic opportunity for them!!

Of course, it did not occur to me that if they are learning to play, then we would need to actually get instruments, so they could practice!!



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

So Tired

A while ago, I finally figured out that I need to nap almost daily. I discovered that if I napped 1 1/2 - 2 hours a day, I had enough energy in the evenings to parent the way I want (to help my kids, be patient with their problems, read/sing to them at night, etc.)

I was feeling good.

A week or two after my discovery, my oncologist casually mentioned that I should not be feeling tired from this kind of chemo.

Never mind that I spoke with other women who also felt tired from "this kind of chemo." Never mind that one woman told me that she could barely function while on "this kind of chemo."

As soon as I heard my doctor say that I should not be feeling tired, I felt that I must be indulging myself.

At first, I just cut out a nap here and there, because there were other things that really needed to be done.

But there are always other things that need to get done. So, every day, I pushed a little bit more, and a little bit more, until taking an afternoon nap really did seem like a luxury.

Recently, I have really been feeling like I am pushing myself beyond my limits. Even though I am acutely aware of all the things I no longer do, I still want to do as much as I can.

But I am crashing. On Monday, I cancelled my morning appointment, so I could sleep a few more hours. On Wednesday, I stopped what I was doing mid-morning and went to sleep... for almost four hours! (I had to really push myself to get out of bed and drive to the Mifletzet) On Thursday, I slept two hours in the afternoon and still went to bed at 10:00 pm (which is really early for me).

I have never been good at limiting my activities. As soon as I am rested enough, I try to return to my "normal" schedule. Then, I discover that I am doing too much, so I cut down my activities. Then I feel rested enough, and.... the cycle repeats itself.

I am not sorry that I am pushing myself. It is summer vacation, and I really want to do fun things with my kids. But it is hard!

Eventually, I will find the balance....

Maybe in September, when school starts....



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

With love and optimism,
RivkA