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Thursday, September 30, 2010

Accepting New Limitations

(This post contains many religious Jewish references.  My apologies to those for whom this post is unclear)

I cried.

I love reading Torah.  Every year, I schlep my famiy to Baka/Talpiot, so that I can celebrate Simchat Torah the way I want.

I always read V'Zot HaB'racha

This year, in addition, I was offered the opportunity to read B'reishit for the Kallat HaTorah.  At least I had the forsight to make sure I had a back-up.

It took me longer than usual to learn the reading of B'reishit

I had no problem reading V'Zot HaB'racha. Like I told the coordinator, I can read that in my sleep. But the melody for B'reishit just flew out of my brain, as if I had not prepared at all.  I could not remember the notes.

Plain and simple, my memory is no longer what it used to be. I cannot avoid the simple, painful fact that I can no longer volunteer to read Torah.

Accepting this new limitation is really tough. 

Reading Torah has always been a profoundly moving, religious experience for me.  Nothing else has ever made me feel so intensely connected to God.  I really feel like I am God's mouthpiece, bringing His words directily to His people.

I take reading Torah accurately very seriously.  I am dilligent about correctly pronouncing the words and singing the cantellations.

I deeply love reading Torah.

To my great disappointment, I find that I can no longer read at a level that is acceptible to me.

In the scheme of things, this might seem like a fairly benign loss.

For me, this marks a significant limitation and really brings home the feeling of loss and disability that accompany cancer.
Crying helped me share with God just how sad I am.  It also helped me to accept that I need to take a step back and let someone else take over. 

It is hard.... really hard....

I know that, in time, I will learn to accept this new reality, as I have accepted previous changes and limitations.

For now, I am still sad.

I am not quite done crying yet....

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

With love and optimism,

Monday, September 27, 2010


I am finished!

I read all of Harry Potter!! 

OK, so most other fantasy fans finished the series ages ago.....  Not us. 

I started reading the books when my kids were younger.  I read the books out loud to them in English.  Then, we kind of lost steam in the middle of book four.  My son finished reading the series himself, in Hebrew, and the rest of us just sort of lost interest.

But now there is that new Harry Potter park at Universal's Island of Adventure, in Orlando, and we all want to go see it.

A few weeks ago, I noticed that my eldest had begun reading the series.  Excited, she informed me that she wanted to read all the books and see all the movies before we visit the theme park.  That sounded like a good idea to the rest of us, so my son reread the series in English, my youngest started reading the series in Hebrew (to be accurate, she started reading in English, but it took her too long, so she switched to reading in Hebrew and is already almost finished with the sixth book) and I started reading the series in English.

I could not put the books down until I finished.

I have been so engrossed in the books, that I have done nothing in recent weeks but read and sleep.  Admittedly, I did a lot more sleeping than reading.  However, every waking moment that I could, I burried my head in one of the books.

Now, I am done!

Tomorrow, we are going to a friend's home for a Harry Potter Marathon.  We plan on watching the first three movies (though if we run out of time, we might only watch the first two).

We are already planning our trip to Orlando, to visit the Harry Potter theme park. 

We saw glimpses of the park, as they were building it, during our visit to Orlando last winter.

I can't wait until my youngest finishes the series and we can all discuss the books together!

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

With love and optimism,

Monday, September 20, 2010

Glow in the Dark (Medical Update)

I am going to start glowing in the dark.

I just started my third radiation treatment to my brain.

Just before my son's Bar Mitzvah, in July 2009, I had a month of whole brain radiation (WBR). The tumors shrank; some disappeared.  Even after 6 months, some of the tumors continued to shrink.

Just before my daughter's Bat Mitzvah, in June 2010, an MRI revealed two new tumors.  I had stereotactic radiosurgery (SRS) on what turned out to be three tumors.  My recent MRI, showed that one tumor shrank, the other is stable. It also showed several new tumors... too many for another SRS. 

The radiologist, who did my intake last Sunday, recommended that we do another round of WBR;  she wanted to wait until this Sunday, so she could consult with the head off radiology, who was in Barcelona for a professional conference.  Moshe and I felt a little nervous about waiting, but we also felt good knowing that the department took the risks of this procedure seriously (particularly since the risks are elevated by repeating the treatment).

We came in on Sunday, and the radiologist was amazing!  She consulted with the dept. head before we even got there, gave us an update (basically, that the head agreed with their earlier decision), invited Moshe to ask the dept. head any questions he still might have, set me up for the simulation, and even for the first treatment!  Things moved much faster than I expected, but I am glad to have started treatment right away, especially after waiting the extra week for the head of the dept. to return.

So, I just finished the third day of radiation.  I will receive 18 treatments altogether.

This has impeded a bit on our holiday plans.

We, more specifically "I," will have to be in Jerusalem every morning, including Erev Chag, Erev Shabbat, and Chol HaMo'ed.

I have been having a tough time with this whole thing.  I am a bit devastated to have more tumors appear so quickly.

Quite honestly, I am scared.

I am trying to keep my chin up, but it is a challenge.  I just do not feel like saying "I am fine" when I am not, and I do not feel like explaining why I do not feel fine.

My emotions are extremely close to the surface these days.  I lose my temper more than I cry, but it would probably be healthier for me to cry a bit more.  I am feeling just a tad sorry for myself these days.

I have not even mentioned the hair thing....

Meanwhile, I am chugging along.  I even taught swimming today (and had great classes, if I do say so myself!)

I just wish I had a bit more energy, and I know that the WBR will knock me out and make me even more tired than I already am.


So, those of you who want to make a chemo or radiation date with me --now is the time!

(I was just kidding about the glowing part....)

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

With love and optimism,

Friday, September 17, 2010

New Year Blessings 5771 (2010-2011)

Wishing everyone a year filled with joy and happiness.

May we all enjoy good health and relief from our pain.

May God answer all our prayers in a good way.

This Yom Kippur, let us learn from our introspection and grow to be better people.

May we be sealed in the book of life for this coming year.

גמר חתימה טובה

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

With love and optimism,

Monday, September 13, 2010

Teaching Swimming -- Trials and Rewards

Last week, for the first time, I had such a difficult time teaching swimming that I wondered if I would be able to continue.  Given how weak I felt, I did not know until this morning if I would be up for teaching today.  Even if I could manage to teach, I worried that it would take everything out of me and leave me like a rag again.

In the end, I felt OK, so I decided to teach, and I am so glad!

I had amazing classes!!

My beginners all accomplished a new step forward and we were all so excited!

My advanced swimmers worked hard and had a very productive lesson as well.

Of course I felt tired afterwards, but I also felt great!

I love teaching and days like today make all the efforts worthwhile!!

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

With love and optimism,

Rosh HaShanah Preparations -- Where the Magic Begins

When we left, not much food was prepared.  Out of 6 meals -- we were invited for two, friends prepared one meal, and my sister prepared another -- that left 2 more meals to be prepared by my aspiring chef, i.e. my 12 year old daughter.

We met my neighbor on the way out the door, as we were leaving for the hospital, and I asked my son to mention to her where we were going and if she could stop by to check on my daughter from time to time, to see if she needed any help/advice with the cooking.

We also tried to reach my sister, who would be joining us for the first day of Yom Tov, to see if she could come early to help, given the current situation (that I was going to the hospital, mere hours before the holiday began).  We discovered later that my sister, who had prepared everything in advance, was out of town for the day.

When we returned from the hospital, to find the house peaceful and all set up, we assumed that our neighbor and my sister were responsible.  They were both quick to inform us that our kids had really done it all.  The kids had worked together and made it happen.

In fact, the kids even handled a small crisis (a grease fire in one of the cooking pots) calmly and responsibly.

When push came to shove, there was no pushing and no shoving.  Our kids cooperated and helped each other and did what needed to be done.

As we sat down together, to share the first festive meal, we thanked the children for pulling it all together, feeling both proud and extremely grateful.

I felt accutely aware of all the blessings surrounding me: my children, my sister, my husband.

God has blessed me with the greatest gifts of all. 

I was tired, I was weak, but I was home with my family.

There is no better way to start the NewYear.

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

With love and optimism,

Sunday, September 12, 2010

Self Doubt vs 20/20 Hindsight Vision

It is so hard sometimes to know what is the "right" decision.

Should I go to the hospital?

Will I get back home in time?

Should I let my Mother in Law pick up the kids and take them to my Sister in Law's, where they could spend the holiday with their granparents, aunt, uncle, and cousins?

What if she do not get home in time?

What if we do get home in time?

What is best for the kids?

What is best for the family?

What is best for me?

Well, it is after the fact. 

We got home in time, so it was good that we had the kids stay.

I feel a lot better, so it is good that I went to the hospital.

We made it home before sh'kiyah (sunset, after which time we are not permitted to drive), so it was okay that we left the hospital when we did.

But when we made each of these difficult decisions, we did not know what the outcome would be.

Wouldn't it be great to know in advance that everything would work out in the end?

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

With love and optimism,

Saturday, September 11, 2010

If You Can't Take the Heat.... Maybe You Need to Go to the Hospital

Wednesday, the plan was to cook.  My youngest daughter planned a menu of delicious recipes, and I was to be her assistant.

But when I woke up, standing on my feet for just a few minutes wore me out.  I had to go back to bed.

I did not feel well.

As the day progressed, I was not getting any better.

I began to worry... a lot.  I had absolutely no strength for anything.  I did not feel sick, but I certainly did not feel healthy.  I could not move.  I could not eat.  I could not even drink.  My body hurt.  My muscles hurt.  Even breathing hurt.

Moshe contacted my oncologist for me.  My doctor agreed that going to the hospital sounded like the right course of action.

It took a while to get out of the house, but we went, leaving behind a house that was no where near ready for a three day chag (holiday).

I got to the hospital and I could not even sit up for triage.  I went straight in to the ER nurse, told her I am an oncology patiend and need to lie down.  The nurse set me up on a bed right away, and she did my intake.

First, I told her how awful I felt.  Second, I asked if I would make it home for Yom Tov (the holiday).

One of the things I love most about Israel is that even the hospital staff "get it;"  they understand that you can be falling off your feet, but you want to be home with your family to celebrate the new year. 

Everyone on staff worked hard to make that happen.

I received two liters of fluids and a half liter of blood.  As the last few drops were flowing, they sent my husband to check out.  As he completed the paperwork, the nurses detached me from the IV, then we "ran" to the car. 

We got home two minutes before sh'kiyah (sunset), to find the food cooked and on the plata (hot plate), and the table set.

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

With love and optimism,

Tuesday, September 7, 2010

Happy Little Home-Maker

I am so impressed by my youngest daughter.

A few months ago, one of her good friends from school gave my daughter a really nice cookbook for her Bat Mitzvah.

My daughter decided she wanted to prepare our meals for the holiday. She carefully went through her cookbook and chose the recipes she wished to prepare.  With a little teamwork, Moshe and I convinced her to settle on two main dishes and two appetizers.

On Sunday, I helped her prepare a shopping list.  On Monday, our friend who shops for us, took her shopping to pick up the ingredients she needs.  Today, Tuesday, she started cooking.

Since I was too tired to help much today, my daughter chose to start with a simple, but very time consuming, recipe; we both felt she could probably make it on her own.

She made Sambusas -- dough filled pastries.

The filling came out amazing and the Sambusas look great.  They do not seem to have puffed up as we expected, and we are not quite sure why.  Nevertheless, my daughter tasted one and they taste good.

Pretty impressive for her first dish!

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

With love and optimism,

Monday, September 6, 2010

Angels, Shoulder Pain, & Shiatsu

Sunday morning, I woke up with excruciating pain in my right shoulder, different from any pain I experienced before.  The focal point of the pain was deep inside my shoulder, and the deeper I inhaled the more it hurt. The pain felt like muscle pain, and I hoped it would work itself out during the course of the day.  Meanwhile, I concentrated on slow, shalow breathing. 

I slept almost all day, partially because I felt so tired and weak, and partially to escape the pain.

Nothing changed.

Midday, I contacted my friend who does Shiatsu.  She had quite a busy day, and asked if I would be up for a treatment in the evening.  Desperate, I told her she should come whenever she could and I would make it work.

I spent the afternoon helping my youngest daughter, who is really into cooking, go over what she wants to prepare for Rosh HaShannah, make a shopping list, and study for her math test the next day.  I do not know from where she gets her enthusiams about cooking, but I am trying to encourage her and be supportive.  She would rather cook than do math; I would rather do math than cook!  I really enjoyed helping her with math, but we did not have a chance to finish before she had to leave for gymnastics. 

Then my son came home. One moment he behaved so charmingly, the next moment he snapped at me, then he again acted like a perfect gentleman, then he bit my head off, and so on.  I had promised to help him make his lunch, and I was determined to fulfill my promise.  Waking up in the morning to make sandwiches for/with him is just too much for me.  I cannot do it. 

My eldest daughter behaved pretty much the same as my son: pleasant one moment, harsh and critical the next.

My kids completely wore me out!

I could not deal with any more stress.... I escaped into my bedroom.

A few minutes later, my angel friend callled: "Are you still up for a treatment?" she asked, ever so sweetly.

We usually do shiatsu in my living room, but I really needed a break from my kids, so she treated me on my bed. 

For the first time all day, I felt some relief. 

When she finished, I did not want to move.  I closed my eyes and fell into a deep sleep.

At one point, Moshe woke me and asked me if I felt comfortable the way I was lying.  I shifted to a more comfortable position, closed my eyes, and resumed my slumber.  Though I woke up briefly a few more times, I quickly returned to sleep, and slept deaply until the morning.

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

With love and optimism,

In addition to practicing Shiatsu professionally, Idit volunteers her services to me and to the Yuri Stern Foundation.

Idit has a wonderful, warm, and relaxing treatment room in her home.
For regular treatments or to treat yourself to something special:
Idit Amir
Idit Amir amir.idit@gmail.com

Sunday, September 5, 2010

Missing Blog Post

Anyone have any idea about how to find a blog post that seems to have disappeared?

I could swear I wrote one on Sunday night and it has vanished.

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

With love and optimism,

Saturday, September 4, 2010

Tough Times

Summer is over, and I have been having a tough time.

Thank God, I had the strength to do things with my kids.  We all really had a great summer.

That said, I spent most of my time in bed.

I am still trying to find the right balance of pain meds.  This Thursday, I consulted with the pain specialist at my hospital and he said I should up the dose of my pain patch by 50%.  I will try it, starting tomorrow, when I switch the patch.

Meanwhile, I am so tired, I just want to sleep all day long.  I read a bit here and there, and then I am ready to go back to sleep.

The cancer makes me tired.  The chemo makes me tired.  The pain makes me tired.  The pain meds make me tired.  My kids make me tired.  Doing everything makes me tired.  Doing anything makes me tired.

Complain, complain, complain.....

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

With love and optimism,

Friday, September 3, 2010

The Hitchayvut from Hell

In order to receive medical care, our health funds need to provide us with a "hitchayvut," a document committing to pay for the process.

For most procedures, this is a fairly benign procedure, that is time consuming and annoying, but straightforward and not difficult.

It is a bit more complex when applying for some of the more expensive procedures, like a CT or MRI.

Sometimes, the health fund refuses coverage, but usually overturns the decision on appeal.

Recently, they continually refused to cover an MRI of my hip.  First they insisted I do a CT, until I provided them with the documentation that I already did a CT.  Then we sent another letter explaining that an orthopedist, who specialized in orthopedic oncology (or oncological orthopedics), requested the MRI, since the CT showed nothing.  The orthopedist wanted to verify that their are no hairline fractures, and felt an MRI might provide us with more information.

It took three months to get an MRI appointment, I thought I would receive a hitchayvut in plenty of time.

Instead, it took three months of arguing with the health fund, with the dedicated help of my GP and his staff.

As the appointment approached, I got increasingly anxious. 

At one point, I had this crazy conversation with my GP and my oncologist -- both who were convinced they understood the other.  My GP explained that my oncologist no longer thought the MRI was necessary, and my oncologist was convinced that my GP was working on getting the approval. 

I begged my oncologist to write another letter, which I then sent to my GP, who sent it in and.... got approval for the MRI, the DAY BEFORE my appointment!!

What a relief!!

My doctor's office sent the hitchayvut to the hospital.  I called to confirm the hospital received it.  They did.


"The code is wrong," Sharon told me.  "It should be Code 73721, for your "perek yerech" (hip)."

I panicked.

I called my doctor's office.  The secretaries promised to take care of it.  I would have to wait until the offices of the health fund re-opened for their afternoon hours.

Worse case scenario: I could leave a check deposit and they would work out the details afterwards.  The check would not even be deposited.

An hour, or so later, a representative from the health fund called me.

"The code is fine," she told me.  "The code is for your "agan" (pelvis) and your doctor's referal is for an MRI of your pelvis.  Everything is in order."

I breathed a sigh of relief and finally fell into a deep sleep.  My appointment was at midnight, and I needed to get some rest.

Big mistake.  I should have called the hospital again... (hindsight vision is always 20-20)

At a quarter to midnight, I arrived at the hospital and went to register for my appointment.

They could not find the hitchayvut. 

I told them that I had confirmed that afternoon that the hitchayvut was there.  They looked.  And looked.  The did not find it.

Someone else looked.  And looked.  And looked.  He started checking even those unlikely places....

And he found it.

I was so grateful. 

I really did not want to leave a check deposit.  That would be just one more thing to follow up....

The MRI staff took me in right away.

They did not fight with me when I insisted that the technician use the smallest needle they have (the yellow one they use for babies!) 

Then, they lay me down on the MRI machine.  I was so exhausted from the ordeal that, despite the loud banging of the MRI, I fell into a deep sleep.

After the MRI, the technician came to remove the IV.

She noticed that I was scratching my arm, and gave me a funny look.

"Do you itch?" she asked, still giving me that strange look.

I had not noticed. 

I paused for a few moments... then I noticed.  I itched all over.

She quickly gave me two pills (4 mg) of ahisten, an antihistamine.

She kept asking me if it was difficult for me to breathe.

Breathing was not a problem, but I defnitely itched.

"You are allergic to the contrast material," she declared, writing out a note.

She debated whether she should send me to the emergency room.  If she did, I would be there all night.

We waited another ten minutes.  I still itched.  I had no problems breathing.

I went home.

I really did not want to stay.

What a night!

Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel. With love and optimism, RivkA

Wednesday, September 1, 2010

Tests (Medical Updates)

Last night I had an MRI of my brain, to see how the tumors in my brain responded to the stereotactic radiosurgery that I had three months ago (you can read more about that experience here (1), here(2) , and here (3)).

Tonight, I have an MRI of my right hip, to verify that there is not hairline fracture or anything else that might be causing the pain in my hip and thigh.  Even though an oncological orthopedist (or is he an orthopedic oncologist?) requested the test, the health fund did not agree to cover it.  The health fund wanted me to image the area with a regular CT, but we did that aly  My GP is a miracle man. After three months, he finally got the health fund to approve coverage, just a few hours before my appointment!

I have to make an appointment for an ECHO, to check that my heart is not being damaged from the various chemotherapies.  Hopefully, I will be able to get an appointment for tomorrow, when I have to be at the hospital anyway.  More importantly, I want to schedule the test with the technician who is gentle and never hurts me when she does the test.

In another two weeks (exactly three weeks after my third dose of Doxil, and one week before I am scheduled to receive my fourth dose), I have a full PET scan to see what influence the Doxil and Herceptin are having on my cancer.

In brief, this month is full of tests that will, hopefully, give us an up-to-date picture of what is going on in my body.

Oh, joy.

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

With love and optimism,

Crossing Over to the Other Side

I finally succumbed to all the pressure and added supplements to my diet.

My youngest daughter, who is our milkshake maven, makes me a special "Ima milkshake" with about a third of a can of Ensure.

I can drink a large cup of milkshake every day or two.

I also have a powder supplement, that I got from friends.  I need to figure out how much to add to make a tasty milkshake.

It is difficult for me, emotionally, to be adding these supplements to my diet.  But I need to find some solution to being so weak and tired.  I know that I am not eating enough and if supplementing my diet will help, then I have to do it. 

I started supplementing, here and there, about two weeks ago.

I have not yet noticed a difference in my energy level.

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

With love and optimism,