Only Because I Love You (i.e. why I posted instead of going to sleep)..... Medical Update: Taxotere (and Herceptin) -- The Next Chapter

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

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PART I -- Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room... to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

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PART II -- Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?”

“I am not sure;” he responded, “I think I want to do an Echo and check your heart.”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!



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

With love and optimism,
RivkA

Yom Ha'Atzma'ut -- Friends and Family

Simple.

That is what I wanted this Yom Ha'Atzma'ut (Israeli Independence Day).

The plan:

At night:
Attend tefillah chagigit (festive prayers) in our neighborhood
Have a nice dinner at home, maybe even a BBQ
Go to sleep (skip the fireworks)

During the day:
Sleep late.
Watch the chidon haTanach (Bible Quiz)
Go to my in-laws for a seudah chagigit (festive meal) with family (my SIL's family) and friends (my SIL's best friend and her daughter -- they are like family).


Just before Yom Ha'Atzma'ut, my eldest informed me that she would be spending the evening with her youth group and would be coming home sometime between 3 or 5 in the morning.

I considered demanding that she come home earlier, but decided to let her participate in her youth group's activities, which included prayers, dancing (just with girls), and other meaningful holiday activities, including the seemingly mandatory Bar-B-Q.

I was pleasantly surprised when she came home in the middle to eat supper with us. In the end, because my two youngest wanted it so much, I did Bar-B-Q, so that might have been an added draw for the oldest.

During supper, my eldest informed us that her youth group's Bar-B-Q would be at 4:00 in the morning. I figured that meant that she would sleep very late the next morning.

Nonetheless, the following morning, I did send my youngest to wake her sister in time to watch the chidon haTanach at 11:00. I was not really expecting my eldest to join us, so I was not surprised when she did not.

I was surprised later, when we insisted she wake up (around 3:30 in the afternoon) so we could go to my in-laws.... When my daughter realized what time it was, she was very upset that she had missed watching the chidon haTanach with the rest of the family.

I had not realized how important it was to her. Had I known, I would have made a greater effort to wake her. I knew she must have been very tired. I thought I was doing the right thing by letting her sleep as much as possible. And perhaps I was, because later, in the middle of our meal, she excused herself to go rest. She was so tired, she fell asleep on the couch.

That said, I certainly understand her disappointment. It is fun to watch together. The kids test their own knowledge, as they try to answer before the particpants. My eldest is quite good at this and enjoys sharing this experience.

Things are never quite as simple as we think they will be.



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

With love and optimism,
RivkA

Medical Update -- Xeloda vx. Taxotere.... and the winner is....

We arrived a few minutes late... and there were no parking spaces... so we parked right in front of the hospital, in the spaces reserved for taxicabs. Who says there are no advantages to having cancer? With a tav neichut (handicapped parking permit) you can park almost anywhere!

We went in, paid and sat down to wait...

When my Second Opinion Oncologist (SOO) came out of her room, she was surprised to see us.

"I did not expect to see you;" she said softly.

When we said down in her office, she continued, "You did not need to come. I sent you an email..."

I explained that we, particularly Moshe, had more questions for her.

She repeated what we have heard before, both from my regular oncologist and others as well: there is no 'right or wrong' answer. Even though Taxotere is an excellent, and effective, chemotherapy, she does not like it so much because of its toxicity. She prefers Xeloda, which has much fewer side effects. That said, she understands why my oncologist recommended Taxotere, and agrees that it makes sense to try it.

She did suggest that if we do choose Taxotere, a full dose should be administered once every three weeks. My oncologist recommended that I receive the Taxotere weekly (1/3 of a dose per week), like I received the Taxol. Spread out, the side effects are less severe. My SOO ceded that the difference in efficacy was not that significant.

(She quoted a study that compared Taxol weekly, Taxol once every 3 weeks, Taxotere weekly, and Taxotere once every 3 weeks. She said that Taxol weekly was the most effective, followed by Taxotere once every 3 weeks.)

When our meeting ended, the SOO told us "there is no reason for you to come to me again; you have an excellent oncologist."

Then, almost as an afterthought, she added, "except, perhaps, after Tykerb. There are several new drugs that are coming out for HER2 cancers."

She suggested that when the time comes, her hospital might be involved in research that will be relevant to me.

As we left, she repeated that we can email her with questions and that we can rely on the judgement of my oncologist. Then, again, softly, she wondered that we had come.

I wondered if I had missed some sort of subtle message when we spoke on the phone. I do not think so. I just think she thought it unnecessary, and thought that was clear. I think she was being sensitive to the fact that it costs so much money to sit with her.

Nonetheless, as we walked out, Moshe expressed his relief at having gotten our SOO's opinion. He noted that had we not gone, he would have spent his nights, laying awake in bed, wondering if we had made a mistake about my treatment. When you look at it that way, we did not waste our time or money. It was worth it for his peace of mind.

And, just so we would take full advantage of being in Tel Aviv, we went out to China Li, a nice Chinese restaurant in Tel Aviv.



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

With love and optimism,
RivkA

Medical Update -- Xeloda vs. Taxotere

I tried to bypass the trip to Tel Aviv.

I emailed the oncologist and received an answer from her. She recommends Xeloda and Herceptin.

Because Moshe wanted an uninfluenced opinion, I sent her the minimal amount of information necessary to form an independent opinion. But now I had more specific questions.

I emailed her again, but did not receive an answer. So I called her with several follow up questions.

She was in the middle of seeing patients, so she was not available for a lengthy discussion. I managed to ask about Taxotere, and she repeated her recommendation to switch to Xeloda.

I wanted to ask her more questions, but she did not have the time or the patience. I asked if there was another time that I could call her. She was noncommital.

That is the only thing that I do not like about this doctor. The only way to consult with her is to come in person. It seems to me that we should be able to have a short phone consultation for relatively simple questions or, at least, a short correspondence via email.

It is clear that the only way we are going to receive satisfactory answers to all our (read: Moshe's) questions is to go in for a consult.

Moshe really wants to do this. I really do not want to. This is so ironic. I am going for him, and he is going for me.

Either way, we are both going to Tel Aviv tonight.

All I want to do is sleep. I forced myself to stay awake to call the oncologist when the secretaries said to call. (Then I had to argue with the secretary until she put me through, and then the doctor did not even really have time to talk with me!)

Now I can't sleep because I have to get ready to go see the doctor, because she did not have time to answer my questions over the phone, and she would not commit to talking with me later.

Oh, yeah, and did I mention that we had an appointment for 8:30 pm, but they moved us up to 7:30, which is NOT a good time for us?!?! (I hope I can sleep in the car!)

I am really trying to stay focussed on how important this is to Moshe.

I wish my two doctors would just talk directly with each other.

I am really inclined to take the Taxotere, for all the reasons I wrote in my previous post.

Moshe asked that I do not decide anything until I speak with the other oncologist. I am trying, but it is difficult.

Now, in addition to not wanting to spend the time or money getting this second opinion, I am worried that it will cause even more strife if Moshe and I do not agree on the next course of treatment.

...as if I did not already have enough stress in my life!

I HATE having cancer!



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

With love and optimism,
RivkA

Medical Update -- Doctor's Recommendations & Second Opinions

My oncologist recommending continuing with the Herceptin and switching from Taxol to Taxotere (rather than Xeloda) for two main reasons:

1. Taxol and Taxotere are both taxanes. Since Taxol was effective, it is reasonable to expect Taxotere to have similar results. Stick with what works.


2. Save Xeloda for when there is progression. Then we can use Xeloda in combination with Tykerb. Studies show those to be an effective combination.

This all makes a lot of sense to me.

Moshe wants a second opinion.

We have consulted several times with one of Israel's top oncologists, who specializes in breast cancer. Unfortunately, she is located in Tel Aviv and we can only see her privately.

I do not expect her to disagree with my oncologist. Even if she might suggest a different chemotherapy, I doubt she would advise against Taxotere. Taxotere makes so much sense as the next course of treatment.

I have been so tired since Pesach. I really do not want to schlep (drag myself) to Tel Aviv, not to mention shell out all that money. Each consultation with this oncologist costs 1,100 NIS! (I get half back from the kupah (health fund), but it is still a sizable chunk of money)

For his part, my oncologist is completely backing up my husband. Though he does not think a second opinion is necessary, he does think it is completely reasonable.

My doctor constantly emphasizes that "this is a couple's disease." He maintains that it would be wrong for me to have the attitude that "this is my body" and do just what I want. It is important that Moshe also feel comfortable and confident that we are doing the best we can to treat this disease.

Over the last few days, Moshe has read many articles about these drugs, and he has many questions. Not only is he interested in Taxotere vs. Xeloda, he is also interested in the combination of Taxotere and Xeloda. (thanks to A for sending us several relevant links, including this article).

Moshe, God bless him, is taking this decision very seriously. He does not want to be at all casual about my life.

I am not being casual about my life. I just know what I want to do.



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

With love and optimism,
RivkA

Baruch Dayan Emet

We first met in an art class (paper mache) for people who have or had cancer. There were less than 10 women in the class. It took a while to figure out who was finished with their treatment, who was still in treatment, and who, like me, would always be in treatment.

P was striking. Tall, and thin, with short light hair. She was often engrossed in her work. She did not chit-chat like the other women.

I discovered that P, like me, had metastatic cancer. She had a different type of cancer and, truthfully, it was a miracle that she was still alive. Her original prognosis was grim, 6 months. I met her several years later.

A nurse by profession, P did not live in an illusion about her fate. But she continued to live life to the fullest. When I met her, she was planning her daughter's wedding.

When my support group started, almost two years ago, she was surprised to see me. I realized she had not comprehended that I also had mets. She was friendlier after that.

Through our support group, I got to know her better. She was intelligent and perceptive. I especially appreciated her perspective on parenting.

P did not join this year's support group. I called her to find out what was going on. She really appreciated the call. She had a conflict with her chemo schedule and it was too difficult for her to come.

Every few months, I called her to see how she was doing. Each time, she seemed happy to hear from me. We would chat for a while and she would update me about her family and her health. She was doing well.

I learned that one of the nurses in the hospital was a close friend of hers. So, periodically, I would ask the nurse about her as well.

It was a while since I last called. So, today I decided to call.

As soon as I asked to speak with her, I suspected that something was wrong. Her daughter handed the phone to someone, and I thought it was P. It was her sister. She was sorry to tell me that they were sitting Shiv'a.

P passed away on Sunday.

Today and Saturday night are the last days of shiv'a (the 7 day mourning period). I would have liked to go, but I won't be able to. Instead, I feel at a loss. I have to focus on getting ready for Shabbat.

I am so sad. So, so sad. But, if I think about P too much, I won't be able to attend to the immediate needs of my family as we all work to prepare for Shabbat.

I want to talk with someone, but I don't know who. The friend I would have called first is in the US. I tried calling one of the women from our group, but she was not home. I tried calling one of the women from Beit Natan; she was not home either.

So, I went back to work. I still have to finish cooking. There is only an hour left.



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

With love and optimism,
RivkA

Medical Update: Two Down -- Now What?

So, I have just "used up" my second chemotherapy.

I will not be receiving treatment tomorrow. Instead, my doctor is squeezing me in for an appointment, so we can determine what my next treatment will be.

This past week, I noticed the chemo (Taxol) affected my hands more than I realized. In addition to a loss of dexterity, I lost much of the strength in my fingers. I find it very difficult to open up a bag of nuts or chips. I have to ask my kids to do it for me. I also have difficulty opening bottles and need to use a grip to give me added strength. Usually, I just give the bottle to someone else to open.

My hands feel more or less the same as they did last week (pudgy), and I do experience periodic tingling in my fingers and hands.

My grip is affected and I constantly feel like I am about to drop things. When I had to put eggs away in the refrigerator, I was so careful, lest I inadvertently drop an egg and have to clean up the gooey mess. (It is yucky, just thinking about it!)
My hands are definitely not so happy. I do not see an improvement from last week to this. I do not want to risk this becoming a permanent condition.

I would not be happy if my hands felt like this for the rest of my life.

That was really the deciding factor in finishing with the Taxol
My tongue is also still not happy, but it is better than it was. At least I feel that it is improving.
My feet are still bothering me, but I cannot tell what discomfort is coming from the inside. They are so swollen, and so very uncomfortable.

I saw my GP, about my cough and about my feet. He still thinks the cough is caused by acid reflux. He put me on a stronger anti-reflux medicine (Pantoprazole) for the next two weeks. I am wondering if the reflux will lessen when I get off the Taxol, and if that will affect my cough.

He also sent me for a chest x-ray, an EKG, and an Echol (which I already did for my oncologist). I think everything is normal.

The CT that I did before Pesach also appears to be normal. The areas of the bone tumors appear bigger, but this is also consistent with the extra bone density caused by the bone strengthening drugs (Zomera/Denosumab).

My markers are normal, so we are not worried.

I am doing an MRI in a few weeks and I will do some sort of full body scan so we have a baseline before starting with the new drug.

And, of course, that is the big question now: to which chemotherapy will I switch?

The two drugs my doctor is considering are Taxotere and Xeloda.

He told us to check them out on the internet. We did. Moshe spent most of today reading up on these drugs and some other derivatives of Taxol.

We did our homework.

We have lots of questions for when we meet with the oncologist tomorrow.



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

With love and optimism,
RivkA

Pesach Vacation 5769 --

The truth is that I was interested in seeing the International Show.

Though we could have bought an extra ticket, I realized:
1. that it was important for MD to have time alone with his Abba (dad)
and
2. that I should stay and hang out with the girls.

Now, as soon as she finished eating and clearing up, Y buried herself inside her tent. She seriously ran away from the mosquitos! She covered herself from head to toe and had no intentions of stepping foot outside of her sleeping bag, never mind her tent.

But, mosquitos or no, A and I needed to go to the bathroom before going to bed, and that meant a walk to the gym.

I suggested to Y that even if she did not need to use the bathroom right that moment, she would probably need to use it some time that evening. And, if she did not go with us, she would have to go on her own.

At first, Y adamantly refused to leave her "safe haven." But, logic eventually won out.

So, the three of us made our way to the gym. When we got there, we ran into YB's daughters. (I had run into YB earlier, but somehow the girls had not found each other before.)

Well, all of a sudden, my girls were no longer tired and the mosquitos were inconsequential.

They started playing this game that reminded me of nok-hocky, but not quite. In this two player game, also on a simple wooden board, players use their fingers to shoot wooden pucks through a hole in a wooden barrier. (you can see the game on this video of the Juggler's Convention, at 1:35)

I was really tired, but it was so good to see the girls having fun that I decided to hang around. I started talking with Super Charlie, one the of juggling equiptment vendors. (He makes most of his equiptment from recycled materials.) He's a really nice guy with an interesting story.

At one point, A went into the gym to do gymnastics on the mats. Later she told me that had she known earlier that there were mats, she would have had more fun . Hello!?! I did tell her! Several times!! (sometimes, it can be frustrating being a mom!)

Y also finally got into things. She borrowed some juggling equiptment from Super Charlie (he had a whole big box of equiptment available for playing) and went into the gym to practice.

Charlie offered to teach me how to juggle with scarves, so we went in too. It was a different experience, being on the floor with the jugglers. It was fun.

The gym was not so crowded, and I enjoyed watching my girls having a good time.

All during the convention, I noticed how helpful and friendly other jugglers are. That night, when Y was playing with a set of poi, a young girl came over and just started showing her how to do things. When Y figured out one trick, the girl showed her another.

The dynamic was so special. That quality of encouragement and comraderie is what made the atmosphere so appealing to me.

Around 11:00 pm, Y got tired, and headed off to bed. She left as MD and Moshe arrived. The International Show was over and the gym started filling up again. Moshe only stayed a few minutes, then he also left to go to sleep. At midnight, I pulled A and MD out, so we could sleep too.

It was the end of a good, long day.

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The next morning, it was time to pack up.

My mistake, and it was a big one, was not feeding them before we started packing up. I wanted to finish packing everything up before it got too hot. But the kids got grumpy.

At one point, I got fed up with all the complaining, and gave the kids a bit of a chewing out. Afterwards, I noticed A seemed upset. I asked her what was wrong. She protested that she had not been complaining and that I unjustly accused her of such. I realized she was right, and I apologized. Things were better after that.

Moshe finally arrived, bringing good things for breakfast. My friend, B, had packed us a going away picnic. The kids were thrilled to find cold, fresh melon! That sure helped pick up everyone's mood!!

I had insisted that we finish packing the car before eating, so when we finished, we were ready to be on our way.

Our final stop was Gan Garoo, a Kangaroo Park adjacent to Sahne. It is a small, quaint park, where kangaroos usually roam free and can be fed and petted by visitors.

Entrance to the park was free during Pesach, thanks to Bank HaPoalim. Due to the high volume of visitors, the kangaroos chose to remain apart, in roped off areas.

After viewing the koalas and the kangaroos, the girls went on ahead. We found them later, doing the various mazes that are also a part of this unique park. MD, Moshe and I did one of the mazes together.

Before we left, we all got ice pops, a rare treat for our family.

It was a great way to end our camping trip: sitting in the shade, on a hot day, sucking cool, sweet popsickles.

Then we stuffed ourselves back into our car, and began the crowded drive back south.



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

With love and optimism,
RivkA

The Cough That Just Won't Go Away

I have been coughing for a MONTH!

I have had enough!

I went to my doctor (GP) after two weeks and he diagnosed the source as reflux. So, for two weeks, I diligently took Omrepradex.

It did not help.

So, today I went back and he switched me to Pantoprazole. I'll take that for two weeks.

We'll see.

The cough wakes me up at night, and my chest muscles are sore from all the coughing.

I have gone through several bottles of cough syrup already.

This better work!



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

With love and optimism,
RivkA

Pesach Vacation 5769 -- Juggling Camp

The fun began at 7:30 pm, with the Israeli Gala Event -- some of Israel's best jugglers performed, including a kid named Ofek, who had a really professional performance and was amazing on the diabolo! (check out this video; there are more videos of him here)

Our son, MD, juggles the diabolo, so it was especially inspirational for him to see another kid who juggled so impressively!

The girls were less enthusiastic, but that is only because they were still pouting about not going swimming! (see previous post)

As we were walking back to our campsite, I met my friend FB, who was there with her whole family! What fun, to discover other friends there!

At the campsite, I found my son laying down inside the tent. He did not want to join us for dinner; his head still hurt him. I suggested that perhaps he would prefer to go with his Abba to sleep in our friends' home. I was surprised when he agreed. When I kissed him goodnight, I could tell he had a fever. No wonder he was so unhappy!

My friends from Sde Eliyahu came to visit, but only B was going was planning to stay. So, after a quick "hello, howryadoin'?", the menfolk all took off.

We had a nice picnic dinner with the ladies, then my girls went off into one tent and B and I went into the other. We should have gone to sleep right away, but who can resist talking in the cool night air, gazing up at the stars, with the sounds of nature all around?

Eventually, we drifted off to sleep.

Now, in the old days, I could just throw my sleeping bag on the ground, crawl in, and sleep soundly through the night. Yet, there I was, inside a tent, sleeping on TWO mizronei shetach (field mats) and I was still uncomfortable. I did not sleep well.

In the morning, we all got into our bathing suits and headed off for a swim! The water was cool and refreshing!

By the time we returned to our campsite, Moshe and MD were back. We had a nice picnic lunch, then Moshe and MD headed over to the gym, where the jugglers were practicing. I rested for a while then B and I went to join them. It was fun watching my son and the other jugglers practice.

The atmosphere was very friendly. Everyone seemed to be helpful and courteous.

There were all sorts of jugglers. There were also mats and ropes for acrobatics.

It sort of felt as if we were behind the scenes at a circus.

At four, one of the visiting troupes, Le Bo Trio, would be performing on the trampoline. I went to gather my girls, who were lounging about on the grass. Reluctantly, they accompanied me back to the gym. The performance was phenomenal!! (check out this video)

When the show ended, I helped my son get his own diabolo.

While he was choosing what he wanted, Moshe, the girls, and B went back in to watch another circus troupe perform. After MD picked out what he wanted, we went in and caught the end of the show.

Afterwards, we went back to our campsite. The kids were getting a little tired of the same meals, over and over. When B's husband came to pick her up, he brought a surprise: shakshouka, and it was still hot. The kids were thrilled!

It would have been a really nice dinner, had it not been for the gazillion mosquitos that suddenly swarmed around us!!

We only bought two tickets to the International Gala performance. MD wanted to go with his Abba (dad), so after dinner they went off to see the show.

I thought the girls and I would go to sleep early, but plans have a way of changing....



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

With love and optimism,
RivkA

Pesach Vacation 5769 -- the fun is only just beginning.....

Weeks before Pesach, my son started talking about the Juggling Convention during Chol HaMoed. Enthusiastically, he explained that you can camp there over Shabbat, that they give you a bracelet, and that there are going to be some of the best jugglers in the world.

Information fell from him in bits and pieces, often when I was busy doing something else.

As Pesach approached, he showed me information on-line, but it was in Hebrew and I did not have the time to read it. It did not occur to me that there might also be information in English.

We often take advantage of Chol HaMoed to visit friends in far off places, especially friends who live up north of down south. But, a few days before Pesach, my girls, especially Y, expressed their desire to go camping.

Now, I love camping, but Moshe really does not. He does not mind if we (read: the kids and I) go camping, but he wants to sleep somewhere with air-conditioning.

In the past, even though he did not enjoy it, Moshe came and helped a lot. The kids were much younger then, and he basically kept an eye on the younger kids while my eldest did her best to help me set up camp.

With the cancer in my bones, camping is more difficult for me than it used to be. Still, now that the kids are older, I figured we could do it if all the kids pitch in and help.

When I learned that the Juggling Convention would be at Gan HaShlosha (Sahne) in Emek Beit She'an, I realized we could combine everyone's needs and interests.

We have really good friends who live less than a ten minute drive from there, on Kibbutz Sde Eliyahu; Moshe could sleep there.

We had all sorts of plans, including a day trip that Y, my eldest, found, after searching the internet for something appropriate for our family's needs. We planned on spending the first day at the Juggling convention and the second day doing Y's tiyul (hike).

Well, you know how it is...

We fully intended to get on our way either on motzai Shabbat (Saturday night) or early Sunday morning.

In the end, we left Hareisha (where we had spent Shabbat), on Sunday, after noon! Which means we arrived at Sahne after 2:30!

We paid the more expensive admission for attending the Juggler's Convention, then we found a place to park. The kids were all hungry (and bickering), so we quickly found a picnic table and sat down to lunch. (Like me, my kids are easily aggitated when they need to eat)

We did not see any jugglers. Not one. Only lots and lots of Israelis!

Eventually, we asked one of the park attendees where the jugglers were. He looked us over and then told us that we had to pay extra for that. I told him we had.

"Really?" He asked us, disbelievingly.

"Yes, really," I insisted.

"Then you don't belong here," he responded, and directed us to where the jugglers were camped.

It was hot and the girls really wanted to go swimming. I did too, but I wanted to get settled in first.

We got back in our car (no small feet, since the only way to fit into our small car with all our stuff was for the kids and I to be buried under our belongings!), and drove to the very end of the park, where it took us at least another 10-15 minutes to figure out where to park.

When we got to the entrance of the convention, we found out that the entrance fee to the park did not cover entrance to the convention! Furthermore, if you did not pre-register (which we did not), the admission fee was twice as high! Moreover, the international performance was not covered in the admission and if you want to attend that, you have to purchase additional tickets!

This was way more than I bargained for!!

The one consolation was that the higher entrance fee to Sahne was a one time fee for the entire juggling convention, including the ability to remain after closing time (4:00 pm) and camp out.

After several minutes of deliberation, we decided to stay and camp there for both nights. My eldest was not happy about that decision. She really wanted to camp out at least one night by the Kinneret (Sea of Galilee). But it was already late and camping out at Sahne made the most sense for a variety of reasons.

By the time we set up our camp, it was almost dark. The main park was closed and we could no longer go swimming. My girls were very disappointed and quite petulant. My son was also complaining that his head hurt.

"This reminds me why I don't like camping," Moshe whispered to me.

It was not an auspicious beginning....



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

With love and optimism,
RivkA

No Chemo for YOU! NEXT!! (medical update)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can't live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today's treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said "wrong."

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go....

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!



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

With love and optimism,
RivkA

Home!

When we pulled into our parking space, after being away for the entire week of Pesach, I took a deep breath and announced "We are HOME!"

I am a master at stating the obvious.



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

Har HaBayit (The Temple Mount)

We went, and it was SOOOOO COOOOL!!

Moshe and I have been talking about going up to Har HaBayit for months. Both of us are proficient procrastinators. So, for one reason or another, we never went.

When Moshe suggested going up for Birkat HaChammah, I could tell he was serious.

I was not so into it, but he was really determined. When he found a group that was going, he told me that he would go alone if I did not want to join him. I would have left it at that, had the kids not wanted to go as well.

I am SO GLAD we went!!

The moment we entered the complex, I was moved almost to tears.

It was really amazing to be standing so close to where the Beit HaMikdash (Temple) stood!!

We walked to the southeast corner, where we could see the sun clearly, then we recited the bracha for Birkah HaChammah.

The Israeli police do not allow Jews pray on Har HaBayit (more about that another time). However, as our guide pointed out, they cannot control what goes on in our minds.

Then we turned the corner and walked north.

We walked around the entire perimeter of Har HaBayit.

If I had nothing else to do today, I would write several posts about our experience right now. But, we still have things to do before we leave for the week.

So, hopefully, I will find the time to write things down while they are still fresh in my mind.

Meanwhile, I want to wish you all a Chag Kasher V'Sameach! (Happy Holiday)



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

With love and optimism,
RivkA

Friends in Milwaukee -- it's a small world!

First of all, I want to thank EVERYONE who offered hospitality or suggested potential contacts.

When I posted, looking for someone to host my friend for Seder, I worried that there wasn't enough time!

How wrong I was!

I was overwhelmed by the immediate response.

I discovered that a friend of mine, CR, (who I know from Israel) is now living in Milwaukee. I did not even know that she moved to Wisconsin!! (Last I knew, she was in Chicago!)

I was so excited when she offered to host! I know they will have a great time together!

Tizku L'Mitzvot!!!



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

With love and optimism,
RivkA

The Day Before Pesach: Chemo, B'dikat Chametz, and Birkat HaChama

Chemo Day: 9:00am-3:00pm

I have no words to thank my friend RG who spent the whole day with me, the day before Pesach!! Special thanks also to her husband, who held down the fort so she could hang with me.

Special thanks also to NT who came to pick me up when I finished... on the day before Pesach!

When I arrived home, I discovered that my two girls did about half of what I asked them to do. Which is not bad, but a little challenging when all I wanted to do was grab an hour or two of sleep.

Did I mention, it is the day before Pesach?

No nap for me!

At 2:21 am, Moshe finished B'dikat Hametz about the same time that I finished my kitchen (read: I finished everything that cannot wait until tomorrow).

My refrigerator is Kosher L'Pesach. My cabinets, ovens, drawers, and machsan (storage room) are closed for Pesach. The floor is done, again. (special thanks to my youngest!) I left a few things out, to be finished by tomorrow. And I am finally ready to go to sleep!

I have two dishwashers going and I remembered to throw my son's clothes in the washing machine, so that is going too.

By 2:30, all the kids were asleep. (thank God!)

How we are going to wake them at 5:0o in the morning is a mystery to me.

Jews around the world are excited about Birkat HaChamah tomorrow. Every 28 years, the sun is aligned exactly the way it was on the day of creation, so we go out at daybreak to say a 10 second bracha (blessing). Yes, it is that short! We say an assortment of Tehillim (Psalms) and other things so it lasts a bit longer. Otherwise you would blink and it would be over.

Moshe got it into his head that it would be totally cool to do this on Har HaBayit (The Temple Mount). I agreed that it would be cool, but thought it was insane to do it on Erev Pesach!

I told him that if he took care of all the organizing, I would go along. Then, it occured to me that my kids might also think it was an insane idea. I was prepared to let Moshe go on his own while I slept a few extra hours and took the kids to the top of our mountain with the rest of our community.

Surprise! The kids are totally into it. Even my son, who is majorly sleep deprived from his tiyul.

So, we are all getting up at 5:00 to go daven (pray) at the Kotel at the crack of dawn, 5:45 am to be exact, (with this group). After davening, there will be a siyum and a seudat mitzvah for those who need it (like Moshe, who is a bachor), and then aliyah laHar at 7:30 am.

Everyone except my youngest needed to go to the mikveh, which was no problem for me, Moshe, or our son (Moshe took him, at midnight, to Yeshivat Itri, in Beit Safafa, which has a men's mikveh that is always open). Taking my daughter was a bit more complicated, but I did it! (I'd love to blog about it, but not today....)

So, my apologies for not providing relevant links to all the references in this blog post.

It is now 3:03am. I am getting up in less than two hours.

Did I mention it is the day before Pesach?!!?



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

With love and optimism,
RivkA

Pesach Preparations -- the traditional kind

First, let me be clear, I only clean for Pesach. I do not do “spring cleaning.”

Second, I only clean the bare minimum. I don't worry about the dust or the clutter. I just worry about getting rid of chametz.

In the past, I spent a lot of time and energy getting rid of chametz. We used to completely rid our home of all things chametzdik (of, or having to do with, chametz).

Moshe does not believe in selling chametz and I do not believe in wasting food.

So, starting around Tu B'Shvat, I stopped stocking up and started working our way through our stores of food and condiments.

I also started contacting food companies to verify the sources of various ingredients. I needed to know, was the vinegar made from wheat or barley, or was it synthetic or make from something else? What about dextrose and dextrin? Were they made from corn, wheat or barley? I could keep the corn derivatives, since I can own kitniyot (even if I can't eat them), but wheat or barley derivatives had to be finished, given away, or thrown out.

Many companies assumed I was asking about gluten, so I had to explain that this was not a health question, but a religious question. It was an educational experience!! And it took time!

I used to check EVERYTHING!

Not anymore.

Ever since I started dealing with the cancer thing, I just can't do it. For a while, I still made the effort to contact companies. Not this year. I spent too much time feeling sick and tired.

Much to Moshe's chagrin, I have taken to selling our chametz.

I sort through what I can. We finish what can be finished. And then I just sell the rest.

So, in theory, I should really have a fairly easy time preparing for Pesach. I just basically need to clean and kasher my kitchen. Oh, yeah, and our extra refrigerator and freezer.

This year, we might not be home at all during Pesach. So, I am not even going to kasher my oven.

We are going to Moshe’s parents for Seder, to his sister’s for Shabbat Chol HaMo’ed, and to our good friends’ for Sh’vi’i L’Fesach (the seventh day of Pesach, with is also a Yom Tov).

But cleaning always takes more time than I expect!

Despite the fact that both girls helped out a lot, we did not finish in two days. (my son is off on three day tiyul (hike), so he got a "free pass" this year)

Sunday, we (read: my girls) cleaned the extra fridge and freezer.

Monday, all I wanted was to clean our main fridge and have everything put away. We did not finish.

Tuesday, I have chemo. I started to panic.

As I sat with my girls and discussed what they would need to do, my eldest jumped in and said "we can finish the refrigerator; we already know what to do."

There is still plenty of work that I have to do. I have to put everything away (the girls will help with that), and I would like to clean our stove, and kasher our grill (so we can take it with us and have a bar-b-que if we camp out).

We are still debating where to be, and what to do, during the 2-3 days of chol hamo'ed.

The kids really want to camp out. They also want to do some hiking and go to the beach.

If we go camping, I'll camp with the kids and Moshe will find somewhere more comfortable to sleep. I wish he liked camping, but he just does not.

I LOVE camping, but my body is not what it used to be. With cancer throughout my bones, I am a bit more sensitive about where I sleep.

I hope I am up for the challenge!!



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

With love and optimism,
RivkA

You Never Know....

Anyone live in Milwaukee, or know someone who lives in Milwaukee?

I am looking for a family to host a friend of mine (not Jewish) for Seder.

She lives in Wisconsin, not far from Milwaukee.

If you know someone or have any ideas, please email me at coffeeandchemo@gmail.com



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

1776 - 1948

Last night, we saw the show "1776."

I thought it was fantastic! My kids did not appreciate it as much as I did. They felt like they did not understand it as much because they were not raised in America. They are probably correct.

We saw the final performance. Afterwards, the director announced that there was a woman in the audience, Shula Cohen, who had fought for Israel's independence and spent 6 years in prison for spying against the British occupation for Israel, while living in Lebanon from 1947 until the early 60's. She was caught and imprisoned by Syria, and released after the 6 day war as part of a prisoner exchange. The connection that the director, and then the producer, made between America's independence and Israel's was very moving.

When they finished speaking, the producer invited the audience to stand. He signalled the orchestra to play and, together, the entire audience sang Hatikvah, Israel's national anthem.


(thanks Mona, for the historical correction!)

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

With love and optimism,
RivkA

Pesach Preparations

I am not talking about cleaning here.

I am talking about scheduling chemo.

Especially now, when I get chemo every week, I have less room to play around.

With my previous chemo (Navalbine/vinorelbine), I had greater flexibility. My blood counts were always good, so if I needed to, I could receive my treatments up to two days early.

Not so with the Taxol.

I can only receive treatments up to one day early.

Since I receive treatments on Thursdays, there is no option to receive treatments one day later. The oncology day ward is closed on Fridays and, of course, on Saturdays as well. (Hospitals in Israel are open and function on Shabbat, but only for things that cannot wait)

So, between my not-so-new-anymore treatment and my not-so-new-anymore chemo day, I am much more limited.

This year, the first day of Pesach falls out on Wednesday evening and Thursday. (Jewish days begin with nightfall on the previous day, and end with nightfall)

Most institutions in Israel give off for the day before a holiday, as well as the day of the holiday. Thus, the oncology day ward will be closed on both Wednesday and Thursday.

Since I can only move my chemo up by one day at a time, I had to plan in advance.

So, my Pesach preparations included scheduling chemo for this week on Wednesday, so I could receive chemo next week on Tuesday!

Phew! (just thinking about it all makes me tired!)

My next chemo day will be on my regular schedule: the Thursday after Pesach, Isru Chag (“the day after”), which is a regular day for most of the country, but is still a holiday from school kid.

I hate having chemo when the kids are still home, but at least it is after Pesach.

The nice thing about all these Pesach preparations is that I will have all of Pesach off. (YAY!)

V’Samachta B’Chagecha! (“And you will rejoice on your holiday!”)





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

With love and optimism,
RivkA