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Wednesday, July 29, 2009

Tish'a B'Av (The 9th of Av)

Almost every year, for the past 14 years, I walked around the Old City on the night of Tisha B'Av.

(You can read last year's post about the walk here.)

(You can read last year's post about how wierd it is not to fast here.)

In all those years, I only missed the walk twice: the year my son was born and one other year (maybe the year my daughter was born?), when I was not up for the walk.

This year, I could not do the walk. As opposed to those other years, when I could not participate for positive reasons, this year I could not do the walk because I am just too tired and in too much pain.

Today was a full and busy day! I spent the early morning on Bar Mitzvah stuff, the late morning working with one of my angels to clean up my kitchen, and the afternoon at the Brit Milah of a friend (and former roommate).

I came home from the Brit and just wanted to take a nap, but there were other demands and not enough time.

Originally, I planned to go with my family, like we have done for the past few years, to hear our good friend, TS, read Eicha for us at the Tayelet, overlooking Har HaBayit. From there we would join up with the Women in Green, who organize and lead the walk around the walls.

For several days now, I wondered if I would be up for the walk; but I certainly expected to go hear my friend read Eicha.

Recently, thank God, I have not been suffering badly from pain. Some days, I do not take any pain killers at all; many other days, I only take them once or twice a day. However, this evening my back and ribs hurt me a lot, even after I took pain killers.

I realized that even sitting on a bench would be too painful for me. Instead of concentrating on the reading, I would be focused on the pain (and waiting for the reading to end so that I could get home and rest).

I worried how my kids would react to this change in events. My staying home would definitely be a break in "the normal order of things." But I had to admit that pushing myself beyond my limitations, "for the sake of my kids," would not be good for any of us.

I broke the news to my husband and kids, who were sad that I would not be joining them, but understood.

My sister offered to come over and read Eicha with me. We both felt that it would be more meaningful for us to read it together. I shared that information with my kids, and I think it made the situation more acceptable.

When my sister arrived, we had a real heart-to-heart. It was good to have that time (and the talk) with her. Then we got out a candle, turned off most of the lights, sat on a low couch, and read Eicha.

In the middle of our reading, my eldest returned home (they had finished reading Eicha already). My daughter has had a cramp in her leg for several days and she realized she that she would not be able to do the walk either. She went into the computer room and watched Home Game, a film about the destruction of Gush Katif. This particular film juxtaposes the expulsion with the local basketball playoffs -- it is a powerful and moving film.

I am really sad that I was not able to mark Tisha B'Av the way I wanted.

I do recognize that I made the right decisions.

But it is hard.

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May those of you who are fasting have a meaningful, and easy, fast.
May the Temple be rebuilt speedily and in our day!
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Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Tuesday, July 28, 2009

I'm Done with Radiation!!! (Medical Update)

I started counting down last Wednesday, when I had just 5 more to go!

Well, I am done!! Today was my last time!!

I started saying my goodbyes yesterday. It is a fascinating thing, meeting the same people every day for several weeks, becoming intertwined in each others' lives, and then parting, perhaps never to meet again.

Anyway, though I am finished with the treatments, the effects keep on going for a while longer. My head/scalp might get redder over the next two weeks. (oh, joy)

The main thing is that the effects of the radiation continue inside my brain for at least another month and a half. We'll do another MRI at that time to see what the radiation accomplished.

Meanwhile, I am still experiencing the side effects: fatigue, loss of appetite (particularly in the evenings), occasional nauseu, itchy scalp (from dryness -- the nurse gave me), and tired eyes (making it difficult to read small print). I think there are other side effects, but I cannot remember them.

My memory has flown out the window over these past few weeks. The doctor said that it is too early for that to be a side effect of the radiation. I am not convinced.

I am having difficulty remember things as simple as street names. This is not my usual forgetfulness.

I just hope the exhaustion goes away soon. It can take a few weeks; but I have stuff to do NOW!!

(Have I mentioned that we STILL have not invited everyone to the Bar Mitzvah, which is now LESS than a week away?!?!)



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

With love and optimism,
RivkA

Sunday, July 26, 2009

Free to Be You and Me

Bonus Post!

I LOVE "Free to Be You and Me". My parents did not "raise me" on it, but I did "grow up" on it!

I do not remember who first showed me the book but, by high school, it was one of my "Bibles." I knew almost all the stories and lyrics by heart.

In college, a good friend gave me her well worn copy of the book. I treasure it to this day.

I made my husband read the book before we got married!! (He did not love it like I did, but I married him anyway.)

Of course, I read the stories and sang the songs to my kids. I still do, when they let me.

Check out this great site with all the words to Free to Be You and Me. (warning: you might start singing out loud....)

I wonder, how many of you love it like I do? (please leave a comment if you do!)



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

With love and optimism,
RivkA

The Bar Mitzvah is Coming -- ready or not!!

My “plan” had been to “get through” all the end-of-the-year stuff and then focus on my son's bar mitzvah.

Of course, discovering brain mets less than a week before school ended stuck a real wrench into that plan!

I started radiation the first day of summer vacation!!

The almost immediate exhaustion hit me by surprise. I kept telling myself, I’ll start working on the bar mitzvah tomorrow…. hopefully I’ll be less tired then….

Yeah, right.

So, here we are and time is running out. After weeks of nothing moving, everything is moving forward, full speed ahead!

I am too tired to keep up!!

Those of you who do not know me personally might have figured out by now that I am definitely a “Type A” personality (those of you, who do know me, figured this out a long time ago). Among other characteristics, I’m a control freak.

Now, knowing that you have to let go of some of that control and actually letting go are two completely different ballgames!

So many wonderful people offered to help me, but I was too tired to even get them organized!! I did not know what to do with all those general offers to help. (Though I did think to ask people to bake for the Kiddush -- at least my brain has not retired completely!)

Thanks to a session with my OT, I made a list of things-to-do and figured out what I could give over to someone else.

I gave over so much already, and I’m still giving over more!

I am grateful for all the help offered by friends, family and acquaintances.

My sister-in-law (SIL) called almost every day, begging for more things to do! She made a MILLION calls to halls, caterers, family, friends, etc. (Did I mention that she has seven small kids of her own?!?)

My sister, SIL, and mother-and-father-in-law (MIL & FIL) all took various kids shopping for clothes for the simcha (celebration) – not an easy task and one that I DREADED!!

Oh yeah, and did I mention that my in-laws, when they first learned of my diagnosis, three days before they were going to fly to America, CANCELLED their trip so they could be here to help us!!

I am truly blessed.

Meanwhile, my son knows his parsha (Torah reading) and his haftorah, and that is really all that matters!



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

With love and optimism,
RivkA

Friday, July 24, 2009

Bald, bald, bald...bald as a ping pong ball, are you bald!

Only whisps of hair were left.

I took a deep breath and let the rest be shaved off.

Now I can rub aloe vera into my scalp and soothe the redness from the radiation.

The buzz cut feels kind of funky.

I encouraged all my kids to rub the top of my head.

I tried to make it fun.

Bald looks better than extreme thinning.

Bald is cool in the summer.

"Now it looks like you have cancer...." said my daughter.



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

With love and optimism,
RivkA

Wednesday, July 22, 2009

Freakin' Me Out!!

When my youngest saw me with almost no hair she came up to me and gave me the sweetest hug.

As she hugged me, she said in the cutest voice, "Ima, it's kinda' freaking me out."

At first, I thought she was just disturbed about my hair falling out and the wierd way it looks.

A few days later, following the suggestion of the psychologist from our support group (at Beit Natan), I asked her what is freaking her out.

"Well," she said, "the idea of cancer in your brain is sort of scary."

"I know," I gently responded, "it is sort of scary for me too."



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

With love and optimism,
RivkA

Saturday, July 18, 2009

My Head is Tingling

The first time my head started tingling I thought my kids brought me a gift from school, if you know what I mean....

How unfair to have cancer *and* creepy crawlies! I mean, come on!

But when I combed my hair, I did not find any unpleasant surprises (thank God!)

A few days later, I had a different, but no less unpleasant, surprise. My hair started falling out.

So far, I have never lost all of my hair. Over time, especially this year, my hair has thinned dramatically. However, I still have enough hair sticking out of my headscarves (which I wear for religious reasons, having nothing to do with cancer) to give the illusion that I have not lost my hair.

Also, because I am fair skinned, and fair haired, even when I lost most of the hairs on my eyebrows, there were some people who did not notice, though most did (I think).

Recently, I noticed that my hair was growing back. It made me feel good.

Then, about a week and a half into radiation, my head started tingling again. The doctors and the nurses warned me that the radiation could make my hair fall out. They also told me that for some people, the hair loss is permanent. I, of course, did not really believe that my hair would fall out... until I felt the tingling.

During the past few days, the tingling became more intense and more frequent. I knew what was coming.

I first noticed the hair coming out on Friday. By Shabbat, the loss accelerated.

I feel like a puppy. I am shedding.

I am not freaking out, but it does make me sad.

I am wondering if I should just shave it all off, to save the mess.

I wonder if that would be allowed during the three weeks (from the 17th of Tamuz through the 9th of Av, when Jews traditionally refrain from cutting their hair as a sign of mourning the destruction of the Temple).




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

With love and optimism,
RivkA

Wednesday, July 15, 2009

Radiation

I've been so busy trying to "catch up," that I have not posted anything about how I have been since I began radiation.

In a word: TIRED!

I am exhausted!! If I do anything that is the least bit taxing, I need to sleep for hours!!

I had radiation before, almost two years ago, on my hip. I felt drained by the experience, but nothing like what I'm feeling now. One of the doctors said that it is common for people to be extremely tired from radiation to the head.

The whole process is pretty amazing. I'm in and out in less than five minutes. It's hard to imagine that something so quick could have such a huge impact on my energy level.

I walk in the room and lie down on the machine. The technicians then strap on my mask (oops, keep meaning to post about that) and align the machine. Then they leave the room, and the machine slowly rotates to the first position, zaps me, then slowly rotates to the second position and zaps me again. Then it rotates back to the original position, the technicians re-enter the room, I get up, replace my head covering and walk out. The actual zapping takes only about 5 seconds on each side (the zap me twice).

The machine makes a high pitched buzzing noise during the zapping and emits a sort of odor (maybe like bleach?).

Today, when I came out of radiation, my friend was so surprised to see me so soon she asked "did they decide not to give you radiation today?" Her jaw dropped when I told her I was already done.

The longest part of the process is waiting your turn. Most days, I wait 45 minutes to an hour for my turn.

One day, there were only two people in front of me and I was out of there in less around 15 minutes. Most days are not like that.



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

With love and optimism,
RivkA

Tuesday, July 14, 2009

"...and they told two friends, and so on, and so on..."

I wrote this on Tuesday, June 30th, less than a week after learning that I have brain mets and before I had a chance to tell my eldest, who was away....
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Remember that commercial?* The one from the 80's that goes:

"... I told two friends... and they told two friends, and so on, and so on, and so on..."

Well, apparently people have been talking, 'cause today I received a call from a good friend who "just heard some not so good news and wanted to know if it was true...."

I have not discussed what has been going on with almost anybody. We told immediate family, a few close friends, and a few other friends who happened to be in the "right" place at the "right" time. But because my eldest daughter is away, we have not really told people.

We feel that our kids should know before other people.

I certainly do not want any of our kids to ever hear news about me from someone else.

So, tonight, when my daughter called, I had to tell her. Once people start talking, there is no way to know how far the news is spreading, nor how fast.

So, when she called tonight, with minimal time left on her battery, I gave her an update.

It was less than ideal. She is away from home, with a group of girls, most of whom she just met, and she is not coming home for another two days. And I just dumped this big thing on her.

I explained why I told her now and she agreed that I made the right decision. Then I encouraged her to try to put the news in a box, which we will deal with when she gets back. I think (hope) that worked for her.

And I answered her big question, "Is it dangerous?" which she asked THREE times. I told her the same thing the doctor told me: We can treat it and you can live with it for years.


This whole episode reminded me of the chassidic tale A Pillow full of Feathers.



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

With love and optimism,
RivkA

*I always thought it was a commercial for MCI, but it turns out that it was for Faberge Organic.

Sunday, July 12, 2009

Two Kinds of People

Back in the days when I was single, I used to think there were two kinds of people:

1. People who were complicated (like me), who had complicated lives and complicated personalities (and who had a hard time finding the right match)

and

2. People who were simple, whose lives (and personalities) were easy (and who could easily be matched up and married)

Over time, I learned that I had the right idea, but the wrong formula.

There are two types of people:

1. People whose lives are complex

and

2. People who you do not know so well


Need I say more?



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

With love and optimism,
RivkA

Telling the Kids (2 out of 3)

This is what went on two weeks ago, after I learned about my brain mets.
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Saturday night, I felt pulled in all different directions. Some last minute issues came up about my son's end of the year play and I had to call the drama teacher to try and resolve them. At the same time, my eldest was anxious to get me out of the house -- I had promised to take her to the mall before she went away the next week. We made it to the mall, but only had about half an hour before the mall closed. Crazy.

I did not have the time, or enough information, to think everything through.

The end of the year play is so all-encompassing, not to mention stressful, that I really hoped to tell the kids afterwards. I forgot that, by then, my eldest would not be home for another several days. I also did not realize how fast things would be moving.

Early Sunday morning, my daughter left for a week-long seminar of "MaShaTzim" (Madrichei Shelach Tze'irim -- a training course for young tour guides).

Sunday afternoon, my oncologist called to tell me he made an appointment for me to begin radiation on Tuesday morning. He could not make it earlier, because the radiation ward was not operating that Sunday or Monday.

I did not expect to begin so soon!

I started reading up on radiation for brain mets. I realized that I really should talk with my kids before I started. But my eldest already left for a week! Aack!

OK, I would stick to my plan of waiting until after the play.

Sunday night, we ended up having a real sit-down dinner. (Unfortunately, It is unusual for us all to be home and eating at the same time.) After dinner, the kids and I sat around the table talking and I knew the time was right.

Over the past few days, I figured out how I wanted to frame the news. From the moment we learned of the diagnosis, Moshe reassured me that this was just "more of the same." That was how I wanted to present it to the kids.

So, as we sat around talking, I told them that the MRI showed progression, that the cancer spread to the brain, that I needed radiation (like I had before) and that I would be changing chemotherapies (again). It felt surprisingly straightforward.

The kids listened, did not really have many questions, and switched topics shortly thereafter.

It seemed so simple.

I wondered if I was missing something.

How could they be so nonchalant about something that sent me into a tailspin?

I had to remind myself that I wanted them to absorb the news without fanfare.

After much deliberation, I had successfully packaged the news so that it was not scary.

So, why was I unsettled?



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

With love and optimism,
RivkA

Thursday, July 9, 2009

Telling the Kids... Or Not... ? -- Shabbat

This is what went on two weeks ago, when I first learned about my brain mets.
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Friday, we were all busy with our usual Friday activities. We did not have time for a serious sit down conversation.

That afternoon, the kids all did their chores pretty nicely. Even our child, who tends to drag out his/her* chore, actually did the chore with almost no complaining. *(you did not think I would give it away, did you?)

I was especially excited. My soul sister from Kibbutz Sde Eliyahu was coming for Shabbat!! Her husband went abroad for business and she chose to spend her free Shabbat with me! I could not wait!!

My mother in law had offered to come for Shabbat and to bring all the food. It was an amazingly generous and thoughtful offer! She was quite surprised when I asked to put her off one week. In hindsight, I think she also felt the need to be close during those initial days of turmoil.

But a chance to spend all Shabbat with my girlfriend does not come every day! I wasn't going to let anything deprive me of that, not even cancer!

So, rather than focussing on my new diagnosis, I had a wonderful Shabbat with my friend and family. I spent a lot of time with my friend. I also did a lot of listening, which was really good for both of us. Only towards the end of Shabbat did I find an opportunity to share my news with her. We did not talk about it much, because my kids still did not know.

I began to think that maybe I could put off telling my kids until after my son's end of the year play....



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

With love and optimism,
RivkA

Wednesday, July 8, 2009

Telling the Kids... Or Not... ?

This is what I felt two weeks ago, when I first learned about my brain mets.
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I was devastated.

My first thought, beyond my own anguish, was how to tell my mom.
(fast forward: My parents were really terrific when I told them. Though they were clearly distraught by the news, they did not freak out. They asked intelligent questions, understood that I did not have all the answers, and just continued to shower me with love and encouragement.)

It was not until one of the nurses asked me about it, that I realized I would have to tell my kids.

In those first few moments, I did not know whether to tell them right away or not. We did not have much information and we honestly would not be able to answer many questions. Yet I did not now how I could not tell my kids right away. I could not stop crying; I would have to explain why. Even if I could stop crying, my kids are smart and sensitive, they would figure out that something is wrong.

I also realized that I could not talk, or write, about any of this until they knew. It would be unfair to tell other people before them. Not only do they have the right to know what is going on, but I do not want them to have to deal with other people's reactions from a position where the other person knows what is going on and they don't.

I would basically have little or no support until the kids knew. That seemed unfair as well. My decision about when to tell the kids should be about them, not about me. On the other hand, this news was so big, how could I just pretend everything was "normal."

I consulted with the social worker. As she spoke with us, I realized that I felt quite strongly about telling the kids before they suspected anything was wrong.

Maybe if I found out during the week, life would be so busy that I could put it off telling them for a few days, until we had more information and more answers. But the next day was Shabbat, when we spend so much intense time together. The kids would pick up on the non-verbal stuff, even if Moshe and I were careful not to discuss anything around them.

Unacceptable. I never want my kids to feel like we are hiding things from them. Knowing that we are completely open and upfront with them gives them the confidence to take what we tell them at face value and not be troubled by infinite doubts and fears.

On the way home, Moshe and I discussed this further. Moshe suggested playing things by ear. We did not have to decide right now. We could wait a bit and see how things go.

That took a lot of pressure off. We had time. Time to absorb the news ourselves and time to figure out how to frame the news to our kids. No one would be home for several hours.

Moshe wondered if he should stay home with me. He had a major deadline at work, so I insisted that he go in to work. I would be fine.

I called a close friend, who I knew would be a good listener. She was not home.

I called another close friend. It was good to talk with her.

Then, I was alone. Alone with this aweful news.

Later, the first friend called back. When she heard the news, she offered to come right over. She has five small kids and it is often challenging for her to get out but, at that moment, she could come. I decided to stop stuggling to keep it all together -- "Yes," I accepted her offer, "please come."

My friend was still over when my youngest daughter came home. My daughter had some things to do for school (remember, this was two weeks ago), so she went into the computer room to work. I told her that I would be in my room, with my friend. We spoke for an hour or so. Though I still felt overwhelmed and extremely frightened, I also felt calmer and ready to face the world. More importantly, I felt ready to face my kids.

That evening, our home was filled with more than the usual chaos. I had spent the day in turmoil. Moshe spent the day dealing with all the beaurocracy of my new diagnosis. My eldest spent the day at the beach with friends of hers from school and came home exhausted and full of energy at the same time, as only teenagers can be! My son spent the afternoon at school, preparing for their end-of-the-year play (more on that another time). And my youngest finally finished the project that she had to turn in to her teacher. Everyone wanted my attention!

Did I mention I had tickets to a play that night?

OK, there was no way I could listen to all my kids, share what I had to share, help them absorb it and leave to see a play. Something had to go. I decided I could wait to share my news.

So, I listened as everyone clamored for attention, loving the healthy chaos of it all.

Then I pulled myself together, put a smile on my face, and went out to have a good time.



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

With love and optimism,
RivkA

Tuesday, July 7, 2009

Free Today?

real post coming soon....

I'm on my way to Hadassah for radiation & a PET scan.

I had a great "date" for today, but her daughter is really sick, so she had to cancel.

If you are around and have the morning/early afternoon free, give me a call if you can come hang out with me.

Meanwhile, I'm bringing a great book with me!



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

With love and optimism,
RivkA

Friday, July 3, 2009

Treatment Plan (Medical Update) -- Radiation

The tumors are small, so I do not need surgery, thank God.

We will switch chemo treatments, most likely to Xeloda and Lapanitib. We are still awaiting approval from the health fund. In any case, we will not start a new round of chemo until we get the results from the PET scan that I am having this Tuesday.

The first round of treatment will be radiation.

On Sunday my oncologist called to tell me he made an appointment for me to begin radiation therapy on Tuesday.

Things were moving quickly!

I read up about radiation options (at BrainMetsBC.org) and liked the idea of stereotactic radiosurgery (SRS) (not really surgery, since they do not cut into your brain) -- they pinpoint the exact area of the tumor and bombard it with high doses of radiation. There are less side effects from SRS than from whole brain radiation (WBR), though WBR is often recommended in addition to SRS.

On Tuesday, the onco-radiologist who met with us (Moshe came with me), explained that I have too many tumors for any of SRS procedures (Gammaknife, Cyberknife, or Xknife). She patiently showed us the images of my brain, and pointed out the tumors. We counted 8 or 9 tumors.

She told me that, after consultation with the head of the department, they recommend WBR, for 20 treatments. I did not want WBR, and asked to speak with the head of the department.

Since I would need WBR, even if I also received STS, I went for the "simulation" while waiting for the department head to return to the department.

The "simulation" is where they set you up for radiation. There is a special machine they use to mark exactly where you will receive radiation. In my case, the set up included making a mask of my head to hold it in the same place and position.

I closed my eyes and the technician placed a warm mesh mold on my face and pulled it down over my head. I held my head still as the mold cooled and formed a hardened mold. I had purposely left my mouth open for easier breathing, but as the mold cooled it pulled my jaw closed so only a small opening was left. I worried that I would not be able to breath easily. The technician assured me that if I found it difficult to breath, the technicians could cut open the area of my mouth.

Then I left to wait for the department head.

There was another woman waiting already and then another couple joined us in the waiting area. Realizing that he might not know to call us in, I returned to the technician to ask how he would know that we were waiting for him. She told me she would let him know.

Good move!

We were the first ones called in.

The head of the department patiently and kindly explained to me, again, the reasons for recommending WBR, primarily because I had over 3 tumors. He also showed us the largest study comparing tumors treated with and without STS and read the summary to us: STS is dramatically effective when there is only one tumor. When there are 2-4 tumors, STS is still significantly effective. However, there is no evidence that STS improves recurrance or survival rates when there are more than 4 tumors.

He did not rule out the use of STS in the future, but certainly saw no benefit at this time. He is one of the top radio-oncologists and his position is consistent with the literature. He did not rush us and answered all our questions, even the ones we repeated from different angles.

I would begin WBR treatment on Thursday.

That first week, I would also receive radiation on Friday. Then I would receive radiation every day, Sunday through Thursday, for a total of four weeks (20 treatments).



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

With love and optimism,
RivkA

Thursday, July 2, 2009

Cancer on the Brain

My oncologist sat there so calmly while I focused on breathing, and not falling apart.

All these years, I have said to myself (and to others), "thank God, it's not in my brain!"

Now, here I sat, in my own worst nightmare.

"We can treat this," my doctor said, reassuringly.

Only, I did not find any of his words reassuring.

"It's in my brain, my brain, my brain," I repeated, softly.

"It was in your liver, your liver, your liver," responded my oncologist, leaning forward and looking me directly in my eyes.

I met his gaze and challenged him, "but the brain is worse!"

"Wrong!" my oncologist corrected me. "Disease in your liver can run you over like a railroad train."

Whoa, talk about cognitive dissonance.

Mets in the liver is a serious threat. Yet, since the mets in my liver responded to treatment (there are no more tumors visible in my liver), and I never experienced any symptoms, I do not feel scared by it.

Now, even though I do not have any symptoms, and we expect the tumors to respond to treatment, I still feel very scared.

It is not completely rational.

Mets in the brain seems so much scarier.



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

With love and optimism,
RivkA

Wednesday, July 1, 2009

Medical Update: Unexpected Diagnosis -- Bad News

Several months ago, I noticed that I had stopped turning my head whenever I could avoid it. I positioned myself (and others) so that I could look at them "head-on." I asked my kids to stand in front of me to talk, rather than turning around to face them when they called from behind. I had to concentrate more when driving.

When I mentioned my new limitations, my oncologist said we should do an MRI. Knowing that the health funds are reluctant to approve more expensive imaging, he sent me for a CT of my head and neck. I suggested that we should still try to get approval for the MRI, so he gave me a referral for that as well.

The CT did not show anything new. So, when the health fund approved the MRI, I questioned my doctor if it was really necessary. He said I should do it, so I did.

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Last Thursday should have been an ordinary chemo day.

I had some concerns about increasing pain in my bones, but my markers were still normal and there seemed to be no other indication that anything might be wrong.

So as we sat in our oncologist's office, reviewing my case, Moshe casually asked our oncologist if he had seen the results of the MRI of my head that I had done over two weeks ago. Hadassa will not send the results to me, only to my doctor. Except, they had not sent the results to my doctor either. So my oncologist picked up the phone, called the radiology department at Hadassa Hospital and then excused himself to go pick up the fax of the MRI report.

A few minutes later, he walked in, placed the report on his desk, and announced that he did not like what he read. He was not joking around.

He called Hadassah again. This time he asked the head of the radiology department to look over the images. The head of radiology confirmed the report.

I have cancer in my brain.

"We were not supposed to know about this yet," my oncologist pronounced.

I have no symptoms that prompted us to do the MRI.

"We did the MRI by accident," continued my doctor, clearly disturbed up by this unexpected turn of events.

My oncologist asked to see the disc from the MRI, so that he could examine the images himself. Then he wanted to consult with someone else. We needed to make some decisions, and he wanted to take some time to consider the options.

I listened, as if from a different dimension.

My oncologist informed us that we can live with this. Brain metastases can be controlled and remain stable for years.

But it will not go away.

I wanted to know how this might affect my 20-year plan.

"Well," my oncologist responded, taking his time, "twenty years is a long plan...."

We already established that 20 years was a bit of a long shot.

"I promise you that I will let you know when things are imminent," my doctor told me seriously, referring to the end stages of cancer for the first time.

"I want to know before that," I responded, explaining, "When things are imminent, you cannot do anything."

"I want to know when I hit the 'two year mark'" I continued, "I want to know when I still have the time and energy to go to Disneyworld with my kids!"

My oncologist turned serious again, "We usually do not discover tumors this early, before they are symptomatic."

Once again, my case is unusual and leaves us full of uncertainty.

"When we discover large tumors with severe symptoms," he continued, firmly but quietly, "two years would be considered a long time."

I could no longer hold back my tears. As they rolled silently down my cheeks, I reach for Moshe's hand.

"I want you to listen carefully to what I said..." my oncologist began, but I cut him off.

I understood. My tumors are small. I have no symptoms. The tumors can be controlled. I can live with this.

But no matter how you cut it, tumors in your brain are just not good.

My oncologist canceled chemo.

My head was spinning.

I needed to stop crying.

I did not want to go "out there," to the chemo ward, where I am always smiling, with tears streaming down my cheeks.

I needed to hold myself together until I could get home.

Then I could fall apart.

My head was swirling.

How was I going to tell my mother?

How was I going to tell my kids?



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

With love and optimism,
RivkA

Learning to Do Laundry

The first time my son "did his own laundry," he just put things in the washing machine.

Thank God that was all he did!

We had just purchased a new machine because our sweet, but not very competent, cleaner overloaded our old machine one too many times.

With the new machine came my new idea to teach my kids to do their own laundry!

My son finally rose to the call and I was so happy... until I went to the machine to show him how to add detergent.

He had packed that new machine so full that it might have called it quits right then and there!

I tried to explain how to fill the machine and suggested that he have me check it for the first few times.

Well, that was enough to scare my son away from doing yet another task.

Between the challenge of knowing how much is “enough but not too much” and the burden of having to get me to come check it, my son did not even attempt to do another load of laundry...

... until yesterday.

He needed socks for a tiyul (hike) and I told him to sort through the laundry and find all the socks buried there.

When we packed his tiyul bag last night, I realized I forgot to do the laundry.

I had seen a few socks in the laundry, but with everything else that was going on, I did not get around to adding anything and starting the load.

"I did it,"
my son told me, proudly.

He ran a load with only 10 socks in it!!!

OK, OK, I know, I know. I should have just told him "good job!" I should have just commended him for taking care of it himself. I should have kept my eye on my goal, which is for him to do his own laundry!

But a load of laundry with only 10 socks, maybe less!?!?!

I could not stop myself from telling him that he really should have added other items, since it is really a waste of water and electricity (not to mention money).

Do I get any points for not yelling?

At the time, I felt so proud of myself for correcting him just once, gently, just so he should know. I even made sure to emphasize that the mistake was “no big deal.”

He did not seem too upset by the whole thing.

We went to the machine to quickly place the socks in the dryer.

Then my son remembered.

With a sheepish grin, he informed me, "I forgot to add detergent."



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

With love and optimism,
RivkA

So Much To Write... So Little Time

These past few days have been so busy!

I have so much to share, but it will take some time to post everything, especially since I need to run some of these posts by my kids.

I want to make sure that I do not post anything that will make them feel uncomfortable.

They do not always want to the whole world to be privy to their innermost thoughts.

It can be tough to have a mom who blogs about you!



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

With love and optimism,
RivkA