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.

*sigh*

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,
RivkA

Medical Update (Brain Mets -- Stereotactic Radiotherapy)

May 26th.

That's the day -- all day.

They will drill 4 little holes in my head, they will screw my head into a frame, they will send me for a CT, they will do some calculations, and then they will zap each of the two tumors in my head, for about half an hour each.

I will be there from 7 in the morning (just getting up that early is torture!) until some time in the evening. 

One day.  One hour.

One day in the hospital.  One hour of radiation.

No big deal, right?

So, why do I just want to curl up under my covers and cry?



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

With love and optimism,
RivkA

As the Sun Breaks Through the Clouds.... (Medical/Emotional Update)

From the moment I discovered that my cancer spread to my brain, I felt surrounded by a dark fog.

I struggled not to get sucked into that black hole we call depression.

I did not want to slip into that world.

Yet, despite all the things I did (on my own, with my family, and with my friends), the fog would not clear.

Months after I finished treatment, I still felt that I was fighting my way out of that dark fog.

I worked so hard at maintaining a positive attitude.

So much of my energy was just sucked away.

I spent days in bed, accomplishing nothing.

Nights, I lay in bed; doom-and-gloomy thoughts, swimming behind my closed eyes.

For almost 10 months, I felt like I was treading water, barely managing to keep my head above water.

After a while, I wondered if I could shake this on my own. 

I filled a prescription for anti-anxiety pills.

I kept them the pills with my pain killers.

I never took them.

About two weeks ago, I noticed the clouds were clearing, and I could see the sun shining through.

Finally, I felt myself returning to that "good place."

I got out of bed. 

I started doing some of those things on my "to do" list. (you know, that awful list of things we have to do, but hate doing...)

I felt like I could be myself, without working so hard.

I felt good.

------------------------------------------------

Then, this past Thursday, Moshe was really sick (he's fine now).  Though he wanted to accompany me, coming to the hospital was not an option.

I went to the hospital on my own.  I met with my oncologist on my own.  I got "the news" on my own.

I responded very rationally.  (I think I might have been in shock)

In my calm, I recognized that I stood on a threshold;  I made a choice.

I did not want to go back to that dark place where I spent the last ten months.

I will not go back there.

It is not so easy.

I have two tumors on my brain that are growing and my markers have been rising slowly, but surely.  I have an appointment with the head of radiology tomorrow (Sunday) and I have a PET CT scheduled for Wednesday. 

I will know more tomorrow.  And I will know even more when we get the results of the PET scan (though I will probably have to wait another two weeks to get those results).

I do not really want to tell people, because I do not want anyone freaking out or feeling sorry for me.

On the other hand, I would not mind if people added a few extra prayers.

I have been talking a lot with God lately. 

I am counting on God to help me get through this.

I want to wake up every day and see the sun, shining bright!



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

With love and optimism,
RivkA

Brain MRI -- Medical Update (May 2010)

Mixed results, mostly good.

Most of the tumors in my brain continued to shrink and some are no longer visible.

Two tumors grew larger.

Sunday I am meeting with the head of Radiology at Hadassah to discuss Stereotactic Radiosurgery (you can find additional info here).  I read a lot about this procedure when I was first diagnosed with brain mets, last June. 

I do not know if the radiologist will do the procedure that same day or not (I suspect not).

I will know more after our meeting.

Now that we have the report, things seem to be moving fairly quickly.

This is not great news, but it is not devastating either (at least, that's what I keep telling myself).

Hopefully, this should not affect my overall diagnosis.

It is just another bump in the road.

I will do the radiation, and keep on moving forward.



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

With love and optimism,
RivkA

In the Middle of the Night.... (MRI Medical Update... Coming Soon)

Regular MRIs of the brain is somewhat controversial, since constant radiation exposure to the brain can actually cause cancer.  Unfortunately, there is no other way to monitor the cancer we already know is there.  So, I go for a brain MRI every 3-4 months, since I want to know what is going on in my head. (Yes, I know, I just opened the door for all those sarcastic comments from my dear friends and family members....)

Well, due to a technical error (i.e. either the fax never went through or Hadassah lost my papers), the MRI dept. did not schedule an appointment for me for this month.  I finally got through to the manager, who found me an "emergency" appointment for this past motz'ai Shabbat (Saturday night), at 11:30 pm.  I explained that I am on chemo, and the hour is really late for me, but that is all there was, unless I wanted to wait another two months.... NOT.  So, I took the appointment.

I planned to arrive early, but understood that if they did not take me until 11:30, I could easily be there until 1:00 in the morning.  And, if there were any emergencies, I could be there even later!

When we realized that Moshe would not be able to come with me, I again tried to move the appointment, to no avail.  Sunday (today) he attended a full day academic conference at Haifa University, about the Dead Sea Scrolls and the Second Temple Period.  He had to leave early in the morning and he needed to go to sleep early.  He felt bad about not being able to take me (he always takes me for my MRIs), but I pointed out that it did not make sense to lose a day of work and pay for a conference if he was going to sleep through the lectures!  Since I had encouraged him to attend the conference, I certainly was not going to be the cause of him missing it!  (For Moshe, attending these conferences is like letting a little kid loose in a candy shop... he thrives on this stuff!!)

Anyway, for all sorts of reasons, I did not get around to making alternate arrangements.  Saturday night came around and I realized I only had a tentative date, who, it turned out, was available, but preferred to be my "back up," since going out that night was not really great for her.

I have lots of late-night friends.  As I considered who to call, I realized that most of my fellow night-owls live outside of Jerusalem (anywhere between 20 minutes to 2 hours away), do not have cars, and would have no way of getting home afterwards.

So, I called one of my Jerusalem friends.  Jackpot!  She had rested on Shabbat, could stay out as late as necessary, had no plans for Sunday morning, and could pick me up and take me home!  To top it off, she is GREAT COMPANY!  I had so much fun hanging out with her.

But the evening had a few "hitches."  I got there early enough, and was able to take care of all the paperwork with no pressure.  When I went to sit down, I saw that there were no longer cushioned waiting chairs but, rather, hard, wooden chairs. I have cancer in my pelvic area and it is painful for me to sit on hard surfaces for more than a few minutes (especially now that I have less padding).  I wrote a note to the head of the department.

Meanwhile, the technician gave me one of the office chairs.

When the technician finally got around to checking me in, I discovered that my appointment was listed for 12:15 -- 45 minutes LATER than what I was told on the phone!!  I was furious, but there was nothing to do.  The manager does not work at that hour and the technician does not have the authority to shuffle patients around.  I wrote another letter (this one was not so nice).

I had brought three shirts to sew while I waited; they all needed buttons repaired or replaced.  I had just finished the last shirt, when the technician said they could take me next.  It was 12:00 am - midnight.

The doctor who inserted the IV needle was not the one I like, but also not the one I did not like.  She was new (for me).  When she inserted the needle, if hurt for just a few seconds, as she felt around for the vein, but then I felt fine (and I have no residual black and blue marks, so she really was good!).   She also took seriously my concerns about the risk of popping my vein.  When it was time to inject the contrast material, she made sure to inject it slowly.  It did not hurt at all.

Twenty minutes later, I was done.  I waited another 10 minute for the technicians to prepare a CT.  The written report would be sent to my oncologist.  I was free to go.

As we left, I started to feel a bit of anxiety creeping into my head.  Soon, I will not be able to pretend.  I will know how the tumors in my brain are responding to my current treatment.  Hopefully, the news will be good.  But until I read that report, I will not know. 

I felt completely worn out.  My friend, God bless her, was wonderfully supportive.  I could have talked with her all night long.  But we both needed to sleep.  It was almost 2:00 am when she dropped me off at my home.

I stumbled into bed.  Moshe reached for my hand. 

Within moments, we both drifted off to sleep, our hands still clasped.



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

With love and optimism,
RivkA

Medical Update: MRI and PET CT -- Results

It turns out, I tend to hear what I want to hear. 

Twice now, I thought tumors were gone, when they were not.

So, today, I sat with my oncologist, to understand what is going on in my body.

The bottom line: my cancer is under control.

I still have tumors in my brain, my lungs and all over my skeleton. 

Thank God, there is currently no evidence of disease in my liver. (At least I got that one right!)


Both the MRI and the PET CT show the tumors in my brain are continuing to shrink.  The shrinking may be a continued effect of the WBR (Whole Brain Radiation) or from the Tykerb/Lapatinib (which seems to cross the blood brain barrier) or both. 

The PET CT also confirmed that:

1. the tumors in my lungs, which are tiny, are stable
2. the tumors in my bones are stable
3. my liver is clear

Overall, the news is good.

Stable is good.

I still wish it would all go away.



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

With love and optimism,
RivkA

MRI - Good News! (Medical Update)

"Can the radiation make the tumors go away?" I asked, first to my oncologist, then the radiologist, then the head of radiology.

I was devastated by the discovery of brain mets. I could not accept that the brain mets would not go away.

"Sometimes the tumors shrink from radiation," I was told, with reservation.

"But can they be totally destroyed?" I persisted.

"Rarely," I was told, by caring doctors who did not want to give me false hope.

The main goal of the radiation was to stop the tumors from growing any further.

That was not good enough for me. I prayed every day, during my five minutes of radiation, for the radiation to completely destroy the tumors.

Well, the tumors might not be 100% gone, but they have certainly lost some of their power!

We have not yet received the written report, but the images look a lot cleaner! We only saw one or two "shadows," only one of which is still a remnant of a tumor, according to my doctor's analysis (though he is the first to acknowlege that he is not a radiologist).

My doctor, upon reading the report, sent me the following message right away:

got the report of your MRI and the improvement we thought we saw is REAL.

This does not mean that I am done with brain mets. Like the bone mets, brain mets never goes away. Still, I doubt anyone expected such good results.

Thank you all so much for your prayers!! God is listening!!

I cannot think of a better way to start the new year!



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

With love and optimism,
RivkA

MRI - A Different Experience

So, I called Hadassa Ein Kerem on Sunday, and the person I needed to speak with was not there. To my pleasant surprise, the secretary (not someone I spoke with before) gently asked if, perhaps, she could help me.

She seemed so nice, I calmly explained the situation to her. Unfortunately, she could only put me on the waiting. I was not satisfied with this, but she very kindly explained that I would get an earlier appointment, she just did not know when yet; someone would call me. At the same time, she encouraged me to call often, as that might speed things up.

In the end, I received a call later that evening, with an appointment for 10:30 pm, the following night!

So, Monday night, after our final aseifat horim, we went straight to Hadassah EK. At night, parking is a lot easier, as was everything else. We had to register at the Emergency Room reception. It was quiet there and I just waited a few minutes before a very sweet young woman filed my forms. Then I went to the MRI department.

The secretaries do not work there at night. So, I waited for one of the technicians to come and take my forms.

In the meanwhile, there was a heated discussion going on between the five other people waiting about whether a Rav (Rabbi) can choose who to service or whether he is a shaliyah tzibbur (emmisary of the people) and has to attend to the needs of anyone who turns to him. There were two hareidi (ultra-Orthodox) couples arguing with a woman who might have been secular, (her clothes were modest and loose-fitting, but she was wearing pants and no head covering), but who I suspect was either traditional or modern religious. She certainly was not anti-religious. It was a good natured, but heated discussion. I joined right in (אילה מה - what did you expect?). I "look" religious (I always cover my hair and I was wearing a skirt), so the couples assumed I would agree with them, but I actually agreed with the woman. They were talking about a very well-know Rabbi who had refused to read a letter that was sent to him from a woman. I actually found it quite offensive that the Rabbi dismissed the letter, but the tone of the discussion was quite friendly, so I did not pursue that point.

After a short time, a young woman was wheeled out (in a wheelchair) from the MRI rooms. It turns out, she is someone I know from Beit Natan. A few years ago, she had breast cancer. Now, here she is, still so young, and she just had surgery to remove a tumor from her brain. I was shocked, though I tried not to show how worried I was for her. She found the tumor because had been suffering from headaches. How many women do I know who were just diagnosed with brainmets? I think this makes 6? My doctor's words echoed in my head "with symptomatic brain tumors... 2 years would be considered a long time."

When I was called in, I started feeling anxious. I mentioned to the attending physicians that the last time I had an MRI, they burst a vein and it was very painful.

Dr. Michael, the male Russian doctor who put in the needle for the contrast, did not seem particularly gentle. He chose a location, in my upper arm, that scared me. I expected it to be very painful, despite his reassurances. I closed my eyes, and focussed on my breathing to try and stay relaxed and calm. I felt a small prick and that was it! I was amazed! He might be my new favorite!

The technician, Andre, also Russian, was constantly smiling and was so nice. I recognized him from the last time. There was also an American woman working there who I recognized, who is also nice and helpful. She checked in with me several times during the radiation, to make sure I was ok.

I was worried when they injected the contrast, but besides the cool sensation I did not feel anything. I was able to relax after that and actually slept through the rest of the MRI.

When we left, I realized that this visit, with the empty corridors and the quiet calm, left me feeling much more relaxed. I almost felt bad about my rant a few days ago...

I might even write a letter about how wonderful Dr. Michael is...



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

With love and optimism,
RivkA

Letting Go

(written last week -- forgot to post....)
----------------------------------------------------

My “plan” had been to “get through” all the end-of-the-year stuff and then focus on the 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, time is running out, and nothing is moving.

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 – not an easy task and one that I DREADED!!

Oh yeah, and did I mention that my in-laws, when they heard about 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 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

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

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

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

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

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

"...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....
----------------------------------------------------------------------------------

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.

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

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

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

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

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