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

Stereotactic Radiosurgery -- Everything You Wanted to Know....

Moshe woke me at 6:00 am, Wednesday morning.  I wanted to snag another ten minutes of sleep, but my stomach already demanded attention. (euphemism for: my first round of diarrhea)

Given my already upset stomach, I decided to skip that day's dose of Tykerb (Lapatinib) and that morning's dose of Xeloda (Capecitabine).  I prayed that would be enough to curb the diarrhea and prevent any unpleasantness during the actual procedure.

The instructions were to wear comfortable clothes, so I actually chose my clothes the night before and slept in them!  (you know, like we did for our kids when they were in gan (kindergarten))  I wore the softest black pants and an extra large, bright purple T-shirt, because purple makes me happy.  **TMI Alert** (I even wore purple underpants.)

I remembered to bring almost everything I needed to the hospital.  I even brought my laptop, so I could "live blog" the experience.  OK, that was a little overambitious!  I did not even turn on the computer!

I did forget all about bringing food.  Luckily, my in-laws (Moshe's parents) were planning to join us, and my MIL prepared tuna and egg sandwiches. (She makes such great tuna salad that even I ate half a sandwich!)   When they heard that I wanted candy, they also made sure to stop by the candy store and pick up my favorites:  licorice and gummy bears.   YUMM... 

My friend, AK, had arranged parking passes for us, so we had no difficulty parking right next to Machon Sharret (the Cancer Institute at Hadassah).

We went to room 60, a special room in the radiology ward, for lucky patients like me.  Most of the day, we had the room to ourselves, because the second stereotactic radiosurgery patient did not need a frame and was free to leave the area.

My sister arrived just a few minutes after we did (and managed to find us, despite there being no mobile phone reception!).  She brought cards and crossword puzzles.  She also went to get me ice-coffee, when I was finally ready to eat something. (Even after a dose of steroids, it would be many hours, before I was hungry enough to eat my MIL's delicious tuna.)

Nadia, the nurse, opened my port (had I realized she would be using my port,* I would have put on Emla (a topical anesthetic), but she was quick and precise and it did not hurt too much) and drew some blood, then hooked me up to a saline IV with Zantac (to reduce acid reflux) and Dexomethasone (steroids to prevent swelling).  She sent Moshe to bring the blood tests to the lab.

Just after Moshe left, the neurosurgeon, Dr. Shushan, came into the room to ask and answer questions.  I wished Moshe would have been there, but at least my sister was with me.  Then the doctor and nurse started to prepare for attaching the frame.  I did not want them to do it when Moshe was not there, but they wouldn't let him be in the room anyway, so....

Dr. Shushan injected Lidocaine in the four locations where they would be attaching screws to my skull.  The nurse had already given me an oral sedative (Vaben).   Just before the doctor injected the Lidocaine, she injected an additional sedative into the IV. They said it would not hurt much.  I am sure it did not hurt them. 

I asked for more of the sedative.  They gave me more, but still not enough.  The last Lidocaine injection was especially painful, it burned.  Then they screwed in the frame.  That was also quite uncomfortable, to put it mildly.

Once the frame was in place, I did not see Dr. Shushan again.  From that point on, Dr. Vigoda, the head of radiology, took care of me.

I felt pressure from the frame, but no pain.  At least, not in the beginning. Over the course of the day, when I felt pain, Nadia gave me liquid Optalgin (YUCH!!!) and I took additional Algolysin, from my personal drug store (with permission, of course).

I tried to sleep, but it was difficult to find a comfortable position with the frame.  My sister teased me, calling me "the bride of Frankenstein."  The shape of the frame reminded us all of the helmets in the original Battlestar Galactica. 

I gave up trying to lie down.  Instead, I sat up and played cards with my sister and mother in law.  My sister kept beating us at Palace (this Israeli card game that she learned from my youngest daughter, who really likes it).  After a million games, I finally won one.  I called it quits and suggested we watch some TV. I tried to relax, but still could not find a comfortable way to lie down.  Finally, with help from Nadia, who strategically arranged the pillows for me, I managed to rest for a bit. 

I expected that by the time I awoke, it would be time for the radiosurgery.  There was something malfunctioning with the machine, so I had several more hours to wait.

My friend from radiology, Tamar, came in to visit/check up on me, several times.  She was really very helpful, and reassuring! 

There was also an English speaking nursing student, Jody, who was very pleasant and helpful.

While we were waiting, we looked for funny programs on TV to help pass the time.  We found some silly shows; they were good for a few laughs.

Another thing I forgot was to bring music for during the radiosurgery.  Tamar brought a CD of musical highlights that she thought I would appreciate -- perfect! 

When they finally called me in for the procedure, I got to listen to all the best songs from West Side Story, Annie, Annie Get Your Gun, Cabaret, etc.

Then, it was over.  They took off the frame -- also not the most pleasant experience, but not too bad.

I was glad it was over.

I wanted to go home right away, but they made me wait.  I felt fine... until I did not.  I had a brief wave of nausea and a headache.  I took more pain killers, ate more candy, and felt better.

I really wanted to pop into my friend's simcha (celebration) -- my friend, MT, married off her final son last night.  But I forgot to bring nice clothes with me!  It was just as well. 

After 13 hours in the hospital (12 within that frame), I was finished.
Overall, the day's events constituted a pretty harrowing experience.
By the time we got home, I crawled into bed. 

My head hurt, and I was exhausted, but I called my mom to tell her I was home and OK.  I knew she would appreciate the call.

Then, I closed my eyes, had a brief conversation with God, and fell fast asleep.


(For more information, see yesterday's brief summary)


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

With love and optimism,
RivkA

*In Israel, nurses need special certification to be able to open a port.  I did not realize that Nadia was an oncology nurse and would be certified.

Stereotactic Radiosurgery -- brief summary (more tomorrow)

I arrived at the hospital at 7:10 in the morning.

They attached the frame to my head at 8:00 in the morning.

They took off the frame at 8:00 at night.

I left the hospital fifteen minutes later, at 8:15.

13 hours in the hospital.

12 hours in the frame.

My head hurts.

I am tired.

There were three tumors that grew, not two.  They zapped them all.

In three months, we'll do an MRI to check the results.

I'll post more details tomorrow.

Gotta' go to sleep.

I am glad it is over.


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

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

I Hate Hadassa Ein Kerem

Don't miss my public survey about cellphones -- Please contribute your opinion!!
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*************** warning: rant ***************

I hate Hadassah Ein Kerem.

Forget about the fact that I have experienced serious medical negligence there (maybe I will post that story another time). Right now, what irks me is the incredible lack of courtesy and professionalism. For the most part, the staff there, from the doctors down to the secretaries, is decidedly unpleasant to deal with. (The radiation department is a noteworthy exception to this rule)

I have filed formal complaints several times about the grossest behavior I encountered, but I cannot take the time to make a complaint every time I deal with a rude secretary. There are just too many of them!

To be fair, the hospital seems to be dealing with complaints more seriously than in the past. Their new guidelines require them to respond to complaints in writing, detailing what has been done to address the issues raised. So, I do encourage making a formal complaint. Still, Hadassah EK needs some serious overhaul/re-training if they are going to change the atmosphere there. Perhaps if enough of us complain, it will make a difference.

Meanwhile, I try to avoid Hadassah EK as much as possible. Unfortunately, Hadassah EK is the largest hospital in Jerusalem; many medical services and treatments are only available there. It is the only place in Jerusalem for radiation. It is also the only place I can get an MRI. (Once a week there is a mobile MRI unit at Sha'are Zedek, but my health fund will only cover an MRI at Hadassah.)

Just getting an appointment for an MRI is a major headache! It starts with the bureaucracy:
First, you have to fax them your referral (hafnaya).
Then, you have to wait 24 hours.
Then, can you call to schedule an appointment.

If, as is what happened with me, they do not receive/find the fax, then you can refax the referral and they will schedule an appointment with you right away.

On Wednesday, I spoke with three secretaries (1 who cut me off, 1 who yelled at me, and 1 who actually helped me) just to find out that they did not get the fax.

I do not have a working fax at home (long story; short version: we want to get a laser printer/scanner/fax but I just have not gotten around to getting it. It would be simple, if we were not particular about wanting a color printer, but we are. Those machines are expensive and we just keep putting it off. So, there you have it) . Since we do most of our "business" by email, we do not need a fax often. If we need to send a fax, Moshe usually sends it from work.

So, I called Moshe and he sent the fax, again. Then I called, again, to schedule the MRI. The fax did not include my name and ID number, without which they will not make an appointment.

I thought I needed to get a whole new referral. So I called the hospital; they said: just add your name and ID number to the referral. OK then!

So I called Moshe, again. He added my name and ID, and tried to resend the fax. It took him over an hour to get the fax through.

Then it was my turn to call them again. When I finally got through, on Thursday, they gave me an appointment in November! I explained that I am supposed to have the MRI a month and a half after I finished radiation. "You'll have to speak with [so-and-so], call back on Sunday."

Boys and girls, can you say "frustration!"?


Footnote: I did not call earlier to make the appointment because I thought I had to include the hitchayvut (commitment to pay) from my kupat holim (HMO). I called now because a friend just told me that I only need the referral to make the appointment, I do not have to wait until I received the hitchayvut. At least now I know for next time!



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

With love and optimism,
RivkA

Bar Mitzvah Shabbat -- and all my angels

I had thought that I would do my son's Bar Mitzvah basically the way I did my daughter's.

How different could it be?

Well, besides the whole Tefillin thing (which is a subject for a different post), I am not the same as I was three years ago.

For my daughter's Bat Mitzvah, I cooked all the food for the Bat Mitzvah Shabbat in advance. My daughter read torah in our very special women's tefillah group. For the kiddush, friends helped bake and prepare fruit and vegetable platters and I also bought a bunch of stuff (like chumus, crackers and junk food for kids).

Everything was very simple, and very good.

Friday night dinner we ate dinner with immediate family only (and our friends, who were hosting us for that Shabbat). For tefillot and kiddush, we invited EVEYONE we knew in the Baka/Katamon/Talpiot/Rechavia area -- we figured מי שבא, ברוך הבא ("Whoever comes is welcome!"). For Shabbat lunch, we rearranged the kiddush tables and set up for lunch in the same space -- for this meal we included guests who had come to Jerusalem for our simcha and friends who had walked from far away.

It was a lot of work, but manageable.

Cleaning up the kiddush room on Saturday night was the hardest part and one of my very good friends came to help us with that.

This time around, my family encouraged (read: pressured) me to order Shabbat food. I resisted -- most ready-made food is high in oil and salt. I wanted to prepare the food myself, but I had a back-up plan: two months before the Bar Mitzvah, a friend offered to organize meals for us, and she kept repeating the offer every few days .

I thought I could manage to cook the food myself... until I found out about the brain mets and radiation. When I discovered how tired the radiation made me, all illusions about preparing food myself dissipated....

The next time my friend offered to arrange meals for us, I did not put her off. Instead, I took a deep breath and said "Thank you, that would be very helpful!"

I do not know why it is so difficult to just accept help. Even after all this time, it is!

This friend, one of the many angels God has sent me, took responsiblity for organizing EVERY aspect of the meals. The food was both delicious and healthful!! What a bracha (blessing)!!!

As Shabbat approached, I realized I would need more help. I spoke with several friends who were happy to help, but I could not find the time or energy to direct them.

Then, God sent me another angel. A week before Shabbat, another friend offered to take responsibility for the entire kiddush, including making calls and seeing what needed to be done (we have a large community, and I had no idea where to start). Before starting, she just wanted to make sure that I did not feel the need to do it myself.

By that point, I realized that I could not do it myself and gladly gave the task over to her. What a weight lifted off my shoulders! I passed her my list of people who had offered to help (bake, prepare platters, etc.). Then, every time another friend offered to help, I asked her to bake and directed her to my coordinator.

I do not think my coordinator realized how many friends, thank God, were baking/preparing food, because the kiddush was enormous!!

I did not even get a chance to see what there was! I spent the kiddush talking with friends and just basking in the joy of having heard my son read Torah and Haftorah so beautifully. (for more about our son's Aliyah LaTorah (Torah reading) see here)

Only at the very end did I see the beautiful cake my downstairs neighbor baked, with a set of tefillin on it!

At one point, a neighbor handed me a piece of kugel Yerushalmi, but I only managed to eat a few bites. I barely tasted anything, but that was ok.

Someone did make a Napolian pastry (I LOVE custard) and I did get a piece of that! Yumm!!

I took the opportunity to address the community, to thank everyone, both from within the community and from without, especially those who hiked in from Talpiot, Baka, Katamon, and even Rehavia!

The Bar Mitzvah Shabbat was particularly HOT, even early in the morning! I felt so blessed to have friends who trekked so far just to hear our son read and to be a part of our simcha!! I really felt embraced by friends and community.

This time, it was too much for me to try and organize a meal with all our guests, so friends ate with other friends in the community.

Our immediate family ate both meals at our home, where I was most comfortable. We were 14 people: Moshe's parents, my parents, my sister, my brother, his wife and their two kids (ages 5 and 2) and, of course, our family of five. (we have five people in our family, 1-2-3-4-5!)

My sister in law, who almost NEVER goes away for Shabbat, also came in for Shabbat with her family (they have seven kids). They took full advantage of being in the neighborhood. They ate the first Shabbat meals with close friends, from their (destroyed) community in Gush Katif, and the second with cousins, who live a few houses away from us. They did join us for seudah shlishit (the 3rd Shabbat meal), but that is a less formal meal, and we were able to all squeeze in (the kids all leave the table within a few minutes anyway).


Thanks to all my angels, I was able to conserve my energy and focus on the important things:
* Getting to shul on time (I even made it to Kabbalat Shabbat)
* Hearing my son read Torah and Haftorah
and
* Spending time with family

I had a wonderful Shabbat!!



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

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

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.
----------------------------------------------------------------------------------

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