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.

Puttin on Tefillin for the First Time (Coming of Age)

Hannah's recent post, at A Mother in Israel, reminded me that I never posted about the first time my son put on tefillin.

Traditionally, boys start putting on tefillin a month before they are Bar Mitzvah. This gives the boy a chance to learn what to do, so that he is comfortable with the procedure by the time he is actually obligated to put on tefillin (when he turns 13). Once the boy starts putting on tefillin, he should not miss even one day.

A month before our son's Bar Mitzvah, right after school ended, he was going on a three day tiyul (hike). We all agreed that it did not make sense for him to start putting on tefillin just a few days before he was going away for three days. So we waited until he came back from the tiyul.

We had not planned on doing anything special. We felt that just the act of putting on the tefillin for the first time was monumental enough. But our son asked to put on his tefillin for the first time at the Kotel (Western Wall).

Interestingly, he noted that going to the Kotel is not as special to him as it might be for other kids, since he went to the Kotel a lot with his school, in the Rova (Jewish Quarter of the Old City). I recognized that, and added that it is not the same as going up to Har HaBayit
(the Temple Mount). His eyes lit up. Wouldn't that be something, we both thought outloud.

*sigh*

So, Moshe planned to take our son to the Kotel on Sunday morning, right after the tiyul. It was not until later that we remembered that Sunday was the first day of his kaytana (two-week summer camp) where he would learn to program in FLASH.

So, even though Moshe is not a morning person, he planned to take our son early in the morning, so our son would not be late on the first day.

Closer to the date, we learned that the kids were expected to arrive half an hour early "just" on the first day, for orientation. Moshe could not fathom how he could take our son to the Kotel any earlier, and we called the school to find out just how necessary it was to arrive so early. It was not that necessary, so we gave it a pass.

That Shabbat, Moshe's parents came to us. I had already started radiation and my mother in law brought all the food with her. We planned for my in laws to stay over on Saturday night as well, so my father in law could be there for when our son put on tefillin for the first time. Over the course of Shabbat, both our daughters and my mother in law expressed their interest in being there as well. If everyone else was going, then I wasn't going to be left out!

So, from what started out as a father-son event, became a three generation family event.

We all got up bright and early and went to the Kotel.

Moshe had gone over the basics with our son, so he was not at a complete loss about what to do. Even so, Moshe walked our son through each step.

For a change, I had remembered to charge the video camera and asked my mother in law to bring her camera (since ours was broken). I took lots of pictures.

We were lucky, and just after we arrived, Rabbi Danny Landes, Director and Rosh Yeshiva of Machon Pardes, arrived with a minyan and we davened together. (Every year, for almost ten years now, I attend Rabbi Landes's 3:00 am shiur on Shavuot night. I ask a lot of questions, so he knows who I am.) It was a special "bonus" to have a minyan led by someone we know. And davening (praying) was really nice.

I could tell that our son was proud to be putting on tefillin, and happy that we had all made the effort to make it something special.

As we were about to go, I realized we did not have a picture of us all together. I stopped a tourist, who was all too happy to take our picture.

We stood together and smiled. We could not have been happier.



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

Pesach Seder 5769 (2009)

Not only did we pack everything we needed to leave our home for all seven days of Pesach, but we even managed to fit everything into our modest family car (five seater, hatchback). OK, it was a little squishy, but we made it! Hopefully, I'll find a better way to pack everything for the longer car trips. (We really need a roof rack!)

This is one of my very useful, but unmarketable skills. I am great at packing things into small spaces. I learned to pack a trunk from my dad, who is the only person I know who can do a better job than I.

When we arrived at my in-laws, everything was beautifully set out.

Moshe's parents asked him to lead the Seder. Moshe managed to keep everyone engaged, despite the fact that we were all really tired both from preparations as well as from getting up at 5:00 in the morning for Birkat HaChammah.

This year's Seder was much more streamlined than last year's. But it was still a dynamic Seder with participation from all involved.

We said maggid (the telling of the story) in the living room, which was very comfortable. I drifted off for a few moments, waking to discover that I missed an entire section of maggid!

Had everyone not been so tired, I would have requested that we sing the songs again. But I could not ask that this year.

Later, when we moved back to the dining room, I had to take a second break. I went to lie down on the couch, and participated from there (when I was not dozing off).

After dinner, my son and eldest daughter finished up on their own and went to bed. Only my youngest daughter stayed up and sang with me to the end.

This year, when we finished Seder, I did not insist on singing all of the fun songs at the end.

I was just as happy as everyone else to go straight to bed.

I left Moshe to help his mom tidy up and I crashed!



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

With love and optimism,
RivkA

Shabbat HaGadol (the Shabbat before Pesach)

I planned on a simple Shabbat... but my good intentions got the best of me.

I invited my in-laws.

We are going to Moshe's parents for Pesach Seder. So, I thought it would be nice to invite them for Shabbat HaGadol (the Shabbat before Pesach).

My MIL (mother-in-law) is totally put together. Her Shabbat table is always set on Thursday night, and her cooking is always done by then as well.
(My Shabbat table is set… before we eat on Shabbat… and my cooking is finished by….. well, I finish cooking before Shabbat. OK, so we have a mad rush to set the plata (hot plate) and everything else before we light Shabbat candles. Wanna’ make something of it?! I admit it; I am not good at the “domestic” thing. Suffice it to say that my MIL and I have very different strengths and weaknesses!)

Anyway, I knew that her kitchen would be kashered (koshered) for Pesach before Shabbat. (I was right)

My in-laws do a lot for my family and me. I often wish there was more that I could do for them. I knew that it would make things easier for them to come to us for Shabbat. Also, it has been a long time since we had them over. So, I enthusiastically invited my in-laws, without even consulting my husband. (oops!)

Then, it turned out that Moshe had to go to work on Friday. He worried about not being around to help when we were having his parents over. I assured him that we would manage.

You see, that is what is so great about Shabbat. Whether you are ready or not, it comes and you make do.

Sure enough, Moshe arrived home at the same time as his parents, about half an hour before candle lighting. The food was cooked, the beds were ready (almost), and the house was cleaned (relatively speaking).

I still had the Shabbat table to clear off (despite my best intentions to keep it clear all week long) and the kitchen counters (which seem to have gotten cluttered again, after a whole month of keeping them clean).

When I invited them, my MIL asked if she could bring something. I suggested that a salad would be helpful, but I emphasized that they did not need to worry about bringing anything.

Well, my MIL arrived with a fabulous fresh garden salad and the ingredients for several other salads. She and my FIL also brought fresh pastries for Shabbat morning and two platters of ready made schnitzels (fried chicken cutlets) for lunch. And fresh Challot. And two boxes of sweet cereal for the kids to finish!

Shabbat was wonderful.

It has been a while since we have hosted guests for all of Shabbat, and my in-laws are great guests.

I had to cut out a bit early from dinner, and I crashed on the couch after the main part of lunch, but I did not have to worry. My husband and kids were happy to entertain! (It was difficult for my MIL to see my pain and my need for pain killers. I tried to make light of it, but I could tell she felt distraught.)

When I awoke from my Shabbat nap, my kitchen was neat and tidy. That was definitely my MIL’s magic!!

After Shabbat, my in-laws had to rush home. I might have liked them to stay longer, but I also had to get right down to “business.” Early Sunday morning, my son would be leaving for a three day tiyul (hiking trip). He needed my help packing!

The only disappointment was that when we were done packing for his tiyul, it was too late to watch Star Trek.

My eldest was out with her youth group, so she did not mind. But my youngest was really disappointed, as was my husband.

Had I realized earlier that family Star Trek night was not going to work out, I would have suggested that my daughter and husband do something special together.

*sigh*



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

With love and optimism,
RivkA