Radiation: DONE!

A linear accelerator -- sounds like something out of Star Trek -- but that's the machine that is used to irradiate tumors. Bizarre.

There's a whole subculture down in the depths of Machon Sharrett, the cancer ward of Hadassah Ein Kerem. This is the only place in Jerusalem for radio-therapy, so cancer patients from all over meet here.

And, unlike chemo, radiation treatment is daily, so there is a sort of fraternity created by the daily contact.

During my first few days, I met an interesting Anglo man. We had a really nice chat. For a few days running, we got there around the same time. It was nice to see a familiar face. I even met his son one day. But then we didn't meet up again. I hope the next time I see him, we will be at some simcha -- we 'll look at each other, and it will take us a second to remember how we know each other...

I also met a really nice Israeli woman. She is young (younger than me), and has three small kids. She has a tumor in her head... But she has faith. She is sweet and quiet and kind of funky. And she is strong. On top of everything else, I learned that she used to live in Gush Katif, and that she and her family had been kicked out of their home during the expulsion. I met two of her sisters and her husband. Her husband, who was struggling to find work, is now home full time -- caring for his wife and his small children. One nightmare after another...

Among a few of the patients, there was a kind of "chevra", who took care of each other. The first one to arrive would sign in everyone else, so the late-comers wouldn't have to wait. (Everyone is assigned a radiation room. When you get there each day, you sign your name on a list, which is hanging on the door to the radiation room. Then you are called in on a "first come, first served" basis.) It was not "fair" to sign in anyone else, but it was a clear sign of caring for people who were strangers not so long ago. (it might have bothered me more if they were on the same list as me).

By the end of my ten days, I finally figured out the routine: Don't waste time on parking. If there are no parking spaces near Machon Sharett, go to the lower levels and take the shuttle bus up. If you have a "tav necheh"(handicapped parking permit), park in the special lot and take the special shuttle. Then, don't wait for the elevator, take the stairs down and sign in right away. For every person who is signed in before you, there is approximately a ten to fifteen minute wait. Once you are signed in, relax. Nothing else is in your control.....

In the ten days I was there, I only waited a really long time once. Most days, I waited only 10-20 mintues. One day, I didn't even wait at all. The last two days of my treatment were Erev Chag and Erev Shabbat. It was really empty on Erev Chag. And Erev Shabbat the place was practially deserted.

The technicians who operated "my" room were very nice. They were pleasant and answered any questions I had. I requested to come in on the Erev Shabbat, so I could finish up my treatment, and they were very accomodating.

Moshe came with me the last day and, by that time I was quite comfortable there. I invited him to come in and see what goes on "inside". I showed him the neat baskets on the bottom shelves that have our names written on them and hold our sheet (the technicians line the "bed" with a sheet and re-use the same sheet for each person -- how environmentally conscious!). But, that's not really what interested him....

The excitement was the machine itself, the linear accelerator ....

Not quite as exciting as Star Trek, but still pretty cool.

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

With love and optimism,
RivkA

Playing in the Rain: a memory

When I was a kid, I loved to sit on our front steps in the summer rain. My mom would open the front door and tell me to "come inside, before you catch pneumonia!" But I loved sitting out there, on the stoop. And I would sit there until she discovered me, and made me come inside, where it was warm and dry......

Now I live in Israel, where there are no summer rains. In Jerusalem, the rain falls in the winter; the rain is cold and chills you to the bone. Here, winter rains really can cause pneumonia, or, at least, a really nasty cold.

Two years ago, there was an "early "rain. The weather was still warm and the rain reminded me of the rain of my youth. The rain fell in early October (or maybe even late September)...

A few weeks earlier, on September 5th, I had my first surgery to remove breast cancer. Baruch HaShem (Thank God), I had family and many friends who helped me during that difficult period. One of my good friends, B, really wanted to help also. But she lives on a kibbutz in Emek Beit She'an, and there was nothing I needed from someone so far away. We went to my in-laws for Rosh HaShannah. Then we stayed home for Yom Kippur; and we broke the fast with my sister, who made all of our family's traditional "break-fast" foods. Succot was three days later, and I didn't know what we would do. I was still recoverying, and very weak. There was no way I could help put up a Succah in our new home, and I wasn't up for camping or hopping from friend to friend, as we had done in past years.

Suddenly I realized that B could help in a way that no one else could.

I called her and asked if we could come for Succot, for Yom Tov and a few days of Chol HaMoed. We would use the kibbutz as our base and go on day trips in the area. The Kibbutz makes a giant Succah, so B's family wouldn't need to go to extreme trouble to host us, and it would be a real experience for the kids to see how the kibbutz celebrates Succot. I would get to spend time with a really good friend and my family would get a real vacation, without too much effort on my part. It was a perfect solution, and B and her family were only too happy to host us.

Perhaps another time, I'll write about the beautiful kibbutz succah, or kibbutz succah hopping, or our visit to the Beit She'an antiquities, or the friends we ran into.... But this post is about the first (or maybe it was the second) day of Hol HaMoed:

We planned to go to Sachneh (Gan HaShlosha), a local park, with natural hot springs. But, that morning, the sky was cloudy and we had to cancel our trip. Sachneh would not be safe if there was thunder and lightning. Not surprisingly, our kids were disappointed. We were having a difficult time coming up with an exciting alternative plan. We took the morning slowly.... maybe the weather would change and we'd be able to go after all...

Sure enough, mid-morning, it started to rain. But there was no thunder, and no lightning.

The day was warm, and the rain was just the way I liked it.

My eyes lit up and I told my kids: "Go out and play in the rain!"

They looked at me as if I landed from out of the sky. "But Ima, it's raining!" They chimed.

"I know," I responded with a grin, "go run in the rain and jump in the puddles!"

"But we'll get our clothes wet!" (whose kids were these???)

"So put on bathing suits" I countered.

That actually seemed to work, and they changed into bathing suits. But when they oppened the door, they were too embarrassed to walk outside in their bathing suits (they were all of 7, 9 and 11). But the "door" had been opened....

"OK, get out of your suits and put on your clothes." I commanded, "Don't worry about getting your clothes wet. Afterwards, you'll change into dry clothes and we'll wash and dry the wet ones." They were beginning to consider it....

It took a bit more convincing, but eventually I got my kids out of the door. They were hesitant at first, but then nature took over. They walked, then ran, then jumped and rolled through many puddles. They played outside for at least an hour. And when they came in, they wanted to share every detail of their experience.

They had made up a dance, which they performed for us.

And they met a very concerned kibbutznik, who was worried about these wild children playing in the rain. "You should go inside", she scolded my kids, "Your mother wouldn't want you playing in the rain". "It's okay," they answered, "our mother is the one who told us to play in the rain." I wish I could have seen that lady's face! But I saw my kids' faces and they were beaming!

We all had a great laugh!

Then, while the kids took hot showers, Moshe and I scoured the neighbors' video collection and found Star Wars.

Perfect.

We spent the rest of the afternoon, warm and dry, watching Star Wars and eating popcorn.

A perfect ending to a perfect day!

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

With love and optimism,
RivkA

Medical Update: Radiation & Hip Pain

Background:

For a few months now, I have had some discomfort in my left hip. Recently, my hip has been hurting more. It bothers me a lot at night, when I am trying to fall asleep. Sometimes the pain is severe and it can be painful to walk or, in extreme circumstances, even to stand.

There is a concentration of cancer in my hip and, due to the increase in pain, the oncologist recommended radiation. He consulted with two top radiologist at Sha'are Zedek Hospital and then suggested that I meet with Dr. Vigoda, who is the head of radiology at Hadassah. Hadassah Ein Karem is the only facility in Jerusalem for radio-therapy.

Update:

On Sunday (Sep 16), my oncologist called me midday and said "Vigoda can see you today. Go now." So, I dropped everything, called Moshe and we went to Hadassah.

We were seen fairly quickly (only a half hour wait) by Dr. Sapir, who was young, very nice and smiled! Dr. Sapir consulted with Dr. Vigoda right away and then, to our surprise, arranged for me to have the "simulation" (where they determine the area to irradiate) and begin radiation immediately. We didn't have to wait, or come back two different times, or anything.

Moreover, though he told us that it would take about half an hour to get the results of the simulation , the results were ready in less than 15 minutes and then I went straight to the first radiation treatment.

The treatement only takes 5-10 minutes. It's amazingly fast. But I need to go every day.

On Monday, I went in and there was only one other person there. It took longer to park, than anything else!

But today, Tuesday, I arrived about a half hour later and waited almost two hours! That was exhausting. Luckily, my friend JB took me and we had plenty to talk about. (working/staying at home/ADD/kids...)

I will receive radiation for 10 days. During this time I don't get chemo. But, the way it falls out, I only miss one week of chemo, because next week was an "off" week. Oh well, no vacation this time.

Anyway, I just finished day 3 of radiation.

Hopefully the pain will go away soon....

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

With love and optimism,
RivkA

I have not dropped off the face of the planet!

I have so much to write.... about Rosh HaShannah, and davening, and all sorts of things.

But I am SOOOOOO tired.

So, please forgive me.

Everything is OK. But I will have to update you tomorrow. (bli neder / I hope)

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

With love and optimism,
RivkA

Proud Parenting Moments: Sneakers & Surprises

Yesterday, Y went to a friend's house after school. Towards evening, she called to ask if she could sleep over. We agreed and wished her a good night.

A short while later, Y called again: she forgot that she had "sport"(gym) the next day and could we please bring her gym clothes and sneakers to school in the morning?

Moshe agreed to bring her the clothes, as long as I made sure they would be ready in the morning (he wasn't home yet, and wouldn't be able to do it himself). I was tired, but Y responsibly convinced me to get put them together right away, since I would be even more tired early in the morning. (It's tough when your daughter is more organized/responsible than her mom!)

I went to her room and, as she gave me instructions over the phone, gathered her things: a pair of sneakers from her shelf of shoes, a pair of green socks (since there were no orange ones in the drawer) and a pair of basketball shorts (down to the knees, even though she's in an all-girls school). I double checked that I had everthing she needed, placed them in a bag, put the bag near the door, triple checked, tied up the bag, and went to sleep.

In the morning, on our way to chemo, Moshe told me what Y discovered when she looked in the gym bag: Two different sneakers, from two different pairs!

How could that happen? I looked! I checked! I held them side by side! There was one left shoe & one right shoe! How could I not notice that the patterns didn't match!?

OK, so she would wear mismatched sneakers, that's not so bad, is it? Well, Moshe reported, it seems that one sneaker doesn't really fit her anymore... oh, no! I had doomed my daughter to teasing and a tortured foot! I failed!

But there was nothing to do and no time to do it! We were on our way to chemo and we couldn't turn back. Y would just have to manage...

Fast Forward:

After dinner, Y comes over to me with two sneakers in her hands. I look and see that the patterns are similar, but the size difference is significant.

"I'm really sorry", I say right away.

It's ok, says my forgiving teenager, we didn't have "sport" today anyway. (God is GOOD!!)

Then, as if that wasn't enough, she says: I really want to thank you for putting the clothes together for me. I know other girls in my class would just call their parents and tell them to bring the stuff for them; but I knew you wouldn't like being talked to that way, since you have your own things to do. And I really appreciate that you stopped what you were doing and took the time to put everything together for me.

I mess up and she's thanking me??

I put my hand to her cheek, looked her straight in the eyes and told her how much I love her and how lucky I feel to have her as my daughter.

May God grant her children just like her!

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

With love and optimism,
RivkA

Chemo Day: Better Than Last Time!

I was quite apprehensive about today.... Would it be another 11 hour chemo-day-from-hell? Would it be a "normal" 4 hour day? How could I plan for it? I tried asking the doctor, but he said there was no way to know what to expect.

And, of course, there were the ramifications: if it takes "too long" again, then, in the future, we would split up the Herceptin into three doses and I would have to come in for a third of the Herceptin every week of the three-week-cycle. Read: I would lose my "vacation" days!

(Currently, I come in for the first two of the three weeks. And, unless my bone medication, which is on a four-week-cycle, falls out on that day, I have "off" every third week. So, out of every 16 weeks, I get three weeks "off". And I don't want to lose those.)

So, I wanted to make sure that it doesn't go too slowly.

On the other hand, I didn't want to do anything that might jeopordize getting the Herceptin, which is a life-saving drug for HER2 cancer patients (like me). So, I didn't want to get the drug too fast and have another adverse reaction.

I got to the hospital around 9:30, earlier than usual for me. But I spent almost 3 hours just waiting! By around 11:00, every time the doctor passed, I smiled and reminded him that "I'm not hooked up yet". (you can imagine my anxiety, as crucial time just ticked away)

It turns out that Alan, my "coffee and chemo" date for the day, is good friends with one of the pharmacists. When the pharmacist brought the drugs to the ward, she sat with us for a few minutes. In passing she mentioned that, thanks to Alan's earlier call, she tried to get the drug ready a little faster. Apparently, somewhere along the way, someone had made a mistake and the pharmacy department hadn't received my prescription; so they hadn't prepared the drug in advance. Moreover, the pharmacy department had to wait until they received a prescription, which must be written by a doctor. (did I mention that mid-morning my doctor left for physical therapy?) So, there was quite a significant delay.

Meanwhile, I had great company. So, that helped distract me from the stress.

We talked about life, and religion, and travelling, and family. And that was only in the first hour!

I was finally hooked up at 12:15! They started the drip slowly, on 40, which was the rate I received the Herceptin last time. Approximately every hour, they raised the rate another 20. At around 80, I felt a bit of pressure in my chest, but it wasn't too bad. By 120, the pressure was still okay, though a bit stronger. But still, this rate was 3 times as fast as the last time!

I was feeling pretty optimistic. Until the doctor breezed in. He suggested that next time we split up the dosage. "I don't want to do that", I answered. No ambiguity there. "Do you feel pressure?", he asked (knowing the answer). "But the drip is on 120, that's 3 times the rate..." But the doctor was already breezing out. "I don't want to do that", I called after him. No response. "So tell them to up the dosage", I called desperately, my words reverberating on walls of the now nearly empty oncology day ward.

My delicate ballance was in an upset. I could feel the tears welling up. I called Moshe right away, and he helped to calm me: "You'll talk to him", Moshe counselled, "you've changed his mind in the past..." (I wasn't convinced that this would be as easy as getting a half-dosage of anti-histamine, but it helped to ground me. Nothing was set in stone yet...)

It was now nearly 3:30 and the nurse upped the rate to 140. The pressure in my chest stayed constant; the discomfort more bearable than the thought of losing my vacation days!

Luckily, Alan had cleared his entire day for me and provided excellent entertainment! We spoke about everything and, most importantly, we laughed a lot! And we looked at many pictures from all his wonderful escapades in the far east! It was fun. I love looking at good photographs and analyzing the composition! And he had a lot of good photographs!

I could almost forget the discomfort... and the stress...

Then, finally, the Herceptin was done! It was 4:00. I jumped up and searched for a nurse (I still had to get the Navalbine). I spotted the doctor. "I'm not giving up without a fight", I warned him (I already had the arguments lined up in my head: the technical mistakes that caused delays that morning, the increased pace of the drip, the psychological importance of getting time off, etc). "I knew you wouldn't", he answered.

I wondered: did he just "play me"? Was the "threat" meant to motivate me to get the drip faster? But I hadn't told anyone not to raise the rate! What was this? I hate it when things are "thrown out" with no time to discuss things. I had to remind myself that nothing would be decided without consulting us. But I was disconcerted.

At 4:30, when the head nurse came to disconnect me, she also suggested that it might be better for me to split up the dosages. So I gave her the arguments. And I focussed on the fact that, had the drug been ready, I would have been done by 1:30/2:30, which is totally normal!

The nurse agreed that my analysis was accurate. So, I promised to call next time, on my way to the hospital, so that everything would be ready....

Now to convince the doctor....

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

With love and optimism,
RivkA

Adventures in Parenting: That's Outrageous...or not!

It was outrageous!

It was only the second week of school and my son was sent to the principal and kicked out of class for not doing his homework!

I couldn't believe it!

And I shouldn't have.... because my son had relayed only half of the story...

But first, a bit of background:
Last year, after repeatedly not doing his homework, my son was kicked out of class. He was justifiably upset. "They should take away recess, not make me miss class", he complained. We wrote a letter to the school, and quoted our son's mature response.

So now I was indignant! What blatant disregard for our concerns that our son not miss class!

I drafted a letter. I called the school, the teacher, the counselor -- no one was available. I called my husband and delivered my tirade. I was not going to let this pass quitely!

Luckily, by the time the teacher returned my call, I had the presence of mind to listen before engaging in battle!

It turns out, that as a result of not doing his homework, the teacher told my son that he would miss recess. My son decided that since the teacher was taking away his rightful break, he would implement his break immediately; he took out his book (Harry Potter, of course) and began reading in class. It was this breach of conduct that prompted the teacher to send him to the principal and the subsequent punishment.

Needless to say, my dismay was redirected to the appropriate culprit....

My son had a hard time hiding his impish grin. He was "busted" and he knew it.

Nevertheless, he was agitated that the teacher had the nerve to take away his recess. I reminded him that she gave him the punishment that he himself had advocated, just the previous year. "Someone must have given me Pollyjuice", he innocently protested! But his claims of memory loss were irrelevant.

Magic potions from Harry Potter were not going to save him.

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

With love and optimism,
RivkA

Barnard Book Club, Parties & Sleep

I am so tired. It's really quite amazing.

I felt pretty good on Tues (chemo day) and also on Wednesday... until about 1:00 pm. Then I started to crash....

I would have gone to sleep right away, but I had to go to Sha'are Zedek (SZ) for a CT. My friend, NT was able to take me and it was nice to hang out for a while, even though I am sure I was a little fuzzy.

By the time I got home, I crawled straight into bed and went to sleep.

Somehow, I managed to wake up and attend my book club. It was a real effort to wake up, but well worth it. I had finished the entire book (Arthur & George, by Julian Barnes) and was quite eager to discuss it. And I had a great time. I love the book club. The discussions are always interesting, as are the women who attend (all graduates of Barnard).

I once said to my husband, about my book club: it's such a diverse group of women (referring to the various ages and ideologies of the women who attend). He looked at me and said: I see.... you are all women, you all went to Barnard, you are all Jewish, you all made Aliyah, and you all live in Jerusalem.....

Well, we now have alumnae who come from Beit Shemesh, Modi'in and Givat Ze'ev... so there!

It really is a great group of women. And I read books that otherwise I wouldn't have read, so that's good too. Sometimes I feel a little pressured to do my "homework". Especially when I don't enjoy the book so much.... But I've really enjoyd the exposure to alternative literature (in my case, that means anything that isn't science fiction, Jewish historical fiction, or books about parenting).

I must add that I am very appreciative of AP, who gave me a ride there and PG, who gave me a ride home. I was too tired to drive and would not have been able to attend without their assistance.

This morning, I was super tired as well. I woke up. Did a bit of what I had to do. And crashed again. I only woke up because I had to get to the pool.

Swimming classes were great! Then I came home, had dinner with the kids, and tried to accomplish a few other "things-to-do" before leaving for a Chanukat HaBayit (housewarming party).

I was really tired, and my mom suggested I skip the party. But I didn't want to. I am not prepared to give up the things I want to do. If I stay home every time I feel tired, I will miss out on all the good stuff and just be stuck with the bad stuff. That's no good either. I'd rather feel tired and have fun, than stay at home and feel sorry for myself.

The evening began with a bit of Torah Study, which was almost over by the time we arrived. Then there was a seudah (festive meal), during which RS (the husband) gave an amusing d'var Torah and shared all sorts of interesting tidbits about the apartment and its furnishings, then dessert and benching (blessing after the meal). I was really tired and ready to go at this point. But them Moshe got into a discussion with the CLS's (the wife's) father, and we were there a bit longer.... Lo Nora (it's not so bad) -- I hadn't really had a chance to talk with CLS before, so we sat and chatted too. And that was the nicest part of the evening!

Earlier, Y pointed out to me that this would be the third night in a row that I was going out. Good for me!

I haven't been out this much in a long time!

I'm ready to sleep now!

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

With love and optimism,
RivkA

Chemo Day: Tues, Sept 4, 21st of Elul

Over the last few days I felt more energetic than I have in weeks! The week off made a huge difference.

When I realized how much better I felt, I started to feel a bit down about returning to chemo. I felt really sad that I was going to be tired again for another three weeks... until my next vacation. But, I'm trying not to let those feelings get the better of me!

I arrived at chemo in a pretty good mood. I know most of the staff by now. The nurses are very friendly and there's a lot of joking around. It makes the experience much more pleasant. (as pleasant as can be, given the circumstances).

I also know some of the other patients by now. There is a feeling of caring and consideration among the patients. Most patients hang out in a large day-room, with very comfy chairs (recliners for the patients and comfortably chairs for their companions). When someone is finished, they wish everyone else good health as they leave. It's nice.

I expected today to be pretty quick. Naively, I thought I'd be finished by noon. Silly me! Even though it took longer than expected to get started (almost three hours from the time I got there until I got the medications), once I actually got started, the IVs only took about 45 minutes.

I had a meeting scheduled with the oncologist today, so my entire "crew" came with me. My mom came, both to see what goes on and for the meeting with the doctor. My MIL (mother in law) also came in especially for the meeting (from BS). I always appreciate having extra sets of ears, so I don't mind them joining me. Moshe was there too, of course.

I always come with a list of questions. My mother also had her own list. The doctor was very patient and answered all of our questions. On the way out, he said to me: "I can see from where you get your questions and your reading. There are apples and then there are apple trees."

It was very cute. I know that he appreciates patients who are well informed and take an interest in their own care.

Apparently, patients with this kind of attitude also have better outcomes.

Anyway, after the meeting with the doctor, my mom and Moshe left to pick up the kids and go to work, and my MIL kept me company until I was done.

The doctor wanted me to get a CT to check out some pain in my hip. I was hoping to get the hitchayvut from the kupah (health fund) so that I could get it done already, while I was already at the hospital (or, at least, in the neighborhood). Also, I didn't want to come in the next day, when I will probably be very tired and had planned to rest at home all day.

While we were waiting, my mother in law took me to lunch nearby, at Yad Sarah. This is Jerusalem's best kept secret eating spot. It's only open until 2:30, but the food is good, and cheap! (soup is 8 NIS per bowl and we had a nice meal for 20 NIS per person!)

We actually got there past closing time. The door was still open, but the food had been put away. So we went in to ask what the hours were. The Russian check-out lady was yelling at another young worker (possibly a bat-sheirut). We almost left, but then the check-out lady finished yelling and started laughing (at the same worker! So Israeli!) Anyway, when the check-out lady realized we had come for food, she asked the behing-the-counter-lady to tell us what food was still available. The check-out lady graciously let us purchase lunch and eat in the restaurant, even though the restaurant had closed and we were the only people there. It was one of those "only in Israel" experiences.

Even after lunch, I still hadn't received approval for the CT (I should get it tomorrow morning). So we left, and my MIL brought me home.

I was feeling tired, but not too bad.

I wanted to sleep when I got home, but one thing led to another and then we had to leave for the parents' meeting at my daughter's junior high school (more on that tomorrow).

It was important to me to attend the school meeting, but I was admittedly a little worried that I wouldn't be up for it. I got the bone drug today, and last time I got really sick from that drug. But I made it. B'li eyin hara', I seem to be reacting better to the bone drug this time.

All in all, it wasn't a bad day.

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

With love and optimism,
RivkA

Back to Normal

Well, things must be getting back to normal, at least on some level.

The kids are making demands like there is no tomorrow.

And friends are calling and telling me about *their* problems.

It's good to be reminded that the world doesn't rotate around me!

And it's nice to be able to offer help/support, instead of only being on the receiving end!

So... be forwarned. Though the blog has focussed mostly on the cancer stuff until now, sooner or later I'm going to branch out and start talking about the way things would be if I ran the world.

Or at least start talking about some of the other issues that concern me. Like parenting and education, etc. And probably some more about respecting our parents.

Maybe then some of y'all will have something to write back!

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

With love and optimism,
RivkA