Thanksgiving 2008

This year, we went again to our friends, T&JG, to celebrate Thanksgiving. I spent much of the evening talking with YC, with whom I laugh a lot!! We stayed a bit later, so we would also have a bit more time with T&J. It was really nice to be with friends for Thankgsiving (though I still miss doing Thanksgiving with NATIV).

For Shabbat, we went to my in-laws for Thanksgiving Shabbat. It was really nice to celebrate with family as well.

Had I been more put together, I would have made arrangements for us to stay in Beit Shemesh on Thursday night, since both T&JG and my in-laws live there. Since this shabbat was Shabbat Irgun (Irgun means organization, but there is nothing organized about Israeli youth groups!), Y did not have school on Friday anyway, and it would be no big deal for MD and A to miss school.

There is no way to translate the craziness of youth groups here, in this case B'nai Akiva, that culiminate in a month of intense devotion called Chodesh Irgun, the apex of which is Shabbat Irgun.

The Thursday night before Shabbat Irgun is Laila Lavan (White Night), during which the kids stay up all night. Y's school just cancelled school on Friday, automatically conceding defeat to the youth. MD & A technically had school, but I did not send them.

When Y was little, I did not understand this facet of Israeli culture, and made her go to school even when she insisted that nobody else would be there. Being American, I thought that if there was school, the teachers would be teaching. Silly me. The few poor kids who came to school would watch some sort of movie (of little or no educational value). Eventually, I learned.

Then, Saturday night, the B'nai Akiva kids put on shows (highly improvisational, very silly, filled with inside jokes I would not understand even if I could hear/understand what they were saying in the first place).

My kids are not in B'nai Akiva (to my chagrin, but that is another story), but many of their friends are. My kids wanted to go watch their friends' plays tonight, but we did not get back to Jerusalem in time. Oh well.

What can I say, I am still an American. I like my kids to go to bed on time and go to school in the morning.

Still, it was nice to have a long weekend (Thursday night to Saturday night), it almost felt like Thanksgiving weekend.

Y's school went all the way, and cancelled school on Sunday as well. She really does have a full, long weekend. Lucky her!

My in-laws gave us the leftover turkey (plus a whole lot of extras), so I'm not complaining!

Hope y'all had a wonderful Thanksgiving!!



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

With love and optimism,
RivkA

Know Anyone High Up in Maccabi?

My health fund (Maccabi) denied me coverage of the Herceptin.

Before we go any further (and before anyone suggests we try to pay for it ourselves, or with donations), Herceptin costs 170,000 NIS per year.

The fund claims that
1. the "progression of disease" shows that the Herceptin stopped working, and
2. I am no different from all the other patients in my situation

However, there are two senior oncologists whose clinical experience leads them to believe that the Herceptin is still a valuable component of my treatment, and there is a research study going on right now to prove just that. Not to mention, most other patients in my situation are eligible to participate in this study, providing them with a means of receiving treatment, where I have none.

So, tomorrow I will start writing letters....

Meanwhile, anyone have any "protectzia"?



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

With love and optimism,
RivkA

Medical Update -- changing meds

Well, it is official. I am definitely switching chemos.

My markers have bounced back up and they are higher than ever.

I will definitely be getting Taxol.

If my health fund (Maccabi) approves, I will also continue with the Herceptin.

The health fund might deny coverage, due to lack of "evidence" that continuing Herceptin with a different chemo is effective. The research, that I cannot join, due to the cancer only being in my bones, is to prove what the doctors suspect, that it is beneficial to continue treating with Herceptin.

Unless, I get the Herceptin within the next 7 days, even if it is approved, I will have to get another "loading dose." That means another major chemo day from hell.....



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

With love and optimism,
RivkA

Uncertainty

So, if there is one thing that I am learning as a cancer patient, it is to recognize that I cannot control everything.

For the past 6 months, my markers have been steadily rising and my pain has been increasing.

After months of tests, scans, deliberations, and sending me for a second opinion, my oncologist has determined that this particular drug combo is no longer working.

I went in for chemo last Sunday, and my oncologist sent me home.

Well, not right away. After my blood test, we sat with my oncologist for about half an hour, discussing options. Both he and my second opinion oncologist (SOO) recommend staying with Herceptin and switching to Taxol. There is uncertainly about whether or not the health fund will approve the change (Herceptin is very expensive, and the health fund might insist a change of both treatments).

Xeloda, which is similar to Taxol, but less toxic, might be a "nicer" drug for me, but both doctors recommended "using up" Taxol first. My SOO suggested saving the Xeloda for use with the drug we will use when the Herceptin stops working. And my oncologist pointed out that I am only available for a particular study if I have already used Taxol. Moreover, the health fund will not approve the use of Xeloda before Taxol has been used.

My oncologist suggested I try to get into a study that would fund Herceptin and Taxol. But that study would make me ineligible to continue with the bone drug study, and I want to stay with the bone drug study.*

We also discussed the side effects of Taxol. I will probably lose my hair. (Want to know how I feel about my hair? Read this) I must admit, I have grown accustomed to having chemo and hair. I do not really want to start down that road now. I do not want to look sick. I will also probably suffer from neuropathy (a tingling of the fingers and toes, sometimes accompanied by a loss of dexterity). That really frightens me. And I might become very tired again. That does not excite me either. I took some deep breathes, and tried very hard to stay calm (read: not cry).

We walked out of his office with a letter to "send immediately" to my health fund, requesting the new chemo (Taxol).

I updated one of the nurses, with whom I am particularly friendly. She informed me that if you have to drop out of a study, sometimes the company will still pay for you to continue receiving the trial drugs. So that, if I need to enter a new study, perhaps I can still receive the bone drugs. (good to know). After she removed my "port" (the needle and tubing that connects my port to the IV), she suggested that I ask the secretary to fax the letter to my health fund, and wished me luck.

I faxed the letter, then my friend drove me home.

A few hours later, my oncologist called.

"Don't send the letter yet," he instructed.

"Too late," I told him, explaining that we had faxed the letter before we left the oncology ward.

"What's going on?" I asked, perplexed.

"Your marker are down," he answered, just as perplexed.

After rising around 20 points every month, for the past six months, my CA-125 marker suddenly dropped 54 points (from 170 to 116). My CEA marker also dropped (from 3.6 to 2.6).

"What does that mean?" I asked, searching for understanding.

"I don't know," he answered honestly, "I wanted some extra time to think."

So, we waited for the PET scan results, hoping they might shed some light on my situation.

He got the report yesterday (Sunday). There is nothing new on the PET scan, it only shows bone lesions. GOOD NEWS for me!! But not at all helpful in determining treatment (though now I am ineligible for that new study, since bone lesions are too difficult to measure, and no other tumors are evident at this time).

I went in on Sunday to test my markers again. No further news yet.

So, here I am, the night before chemo, and I do not know what chemo I might be getting or if I am getting chemo at all.



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

With love and optimism,
RivkA

*I am either getting Zomera or a new drug called Denosumab. Participating in the trial is a win-win for me. The Zomera is the next generation drug of its kind, and is not covered by the health funds. And the Denosumab is a new drug which is not even available on the market. So, either way, I'm getting a better drug than I would have gotten had I not been in the study.

Eilat -- Day 2 -- Diving with the Dolphins

***Don't get confused! I am home!***

"Day 2" was Tuesday, November 11

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

It might not be nice, but when my sister took my daughter diving with the dolphins for her Bat Mitzvah, boy was I jealous!!

I have been swimming since I was a baby! I virtually grew up in the water. My childhood fantasy was to be a mermaid when I grew up, so that I could spend all my time under water.

Not surprisingly, I have always been fascinated by, and enamored with, dolphins. After all, dolphins are intelligent creatures, perhaps even smarter than humans, who live under water! And they are so graceful!!

So, when my friend suggested we go to Eilat, all I could think was: I am going to swim with the dolphins!

I was crushed when my doctor did not give me his "stamp of approval." (see Limitations)

Moreover, when I mentioned that my sister and I were considering learning to SCUBA dive together, my doctor asserted that I would not be eligible for a license. *SQUASH* another dream bites the dust.

Then, the rebound. I did not give up.

When I went for my second opinion, I asked the oncologist about diving with the dolphins. She did not see any reason for concern, and was willing to write me a note. (Salvation is on the way!)

The doctor stressed that I should not hide my medical history from the diving center (so much for that plan!), so I called the dolphin reef in advance, informed them that I had permission from one of the heads of oncology at Tel HaShomer, promised to bring the note with me, and received approval to dive with the dolphins!

What a fantasy! I was going to enter the wonderful world under the sea! I dreamt of this my entire life! I thought it would be so easy!

It was tougher than I expected....

First, you have to get into a wet suit, which I could not do by myself. Then, they strap a belt on you with weights to.... (you guessed it) weigh you down. Then, they strap on the air tank, which is also plenty heavy. Then, feeling like a bloated beached whale carrying flippers, we plodded down to the beach, stopping on the way for the photographer to snap our picture. (say "cheese!")

Once in the water, we were instructed to bend over and put on our flippers. When I told my instructor/guide*, Assaf, that I could not do it, he encouraged me to try. I should have told him that I can barely put on socks myself, and that is without all the extra bulk and weight. Instead, I bent over to try to put on my right flipper, since that leg is more flexible than my left leg. Assaf directed me to put on my left flipper first. I tried, more than once, before insisting that he help me. This was not the way I wanted to start (frustrated, humiliated, and feeling incompetent).

Nevertheless, I was not going to let anything spoil my fantasy. So, I lay back on the water, let Assaf put on my flippers, and we moved on to the next step.

I put the mouthpiece in my mouth, and breathed in the air. It was not like breathing through a snorkel! It felt like breathing with a shirt over my mouth. I could breathe in, but it did not feel comfortable. Assaf encouraged me to breathe slowly, and not try to fill my lungs. I did my best.

Then I floated, face down, on top of the water, and breathed via the tank. I felt like I was not getting enough air, and I stood back up. I knew I had to stay calm, so I focused on breathing slowly and steadily. I tried again, but it still did not feel right. I knew I should not stand up again, but I did.

I started to feel anxious. Would I be too afraid to go through with it? I had come this far, I did not want to fail. I looked at Assaf and told him that I was afraid. With gentle patience, he assured me that diving can be intimidating at first and that we would go down slowly, and he would check with me at every stage. I took a deep breath, lay down, and did not stand up again.

True to his word, every time I felt a bit of pressure, as we went lower, Assaf used hand signals to ask if I was alright. I signaled him that I was fine.

Within a few minutes, we were several feet below the surface, and I felt completely comfortable.

Once over my initial fear, I felt like I could stay under the water forever.

As we swam out a bit, I felt in awe of the underwater world. There were small coral reefs and clusters of fish. I recognized many of the fish from the underwater observatory.

Then there were the dolphins.

Every so often, one or two dolphins would swim by. They were so beautiful. But they did not stop to play. In a flash, they were gone.

At one point, five of the dolphins were all in tumble. A few of the other divers swam closer, but my guide held me back. Later, when I asked why, he explained that the dolphins were fighting and he did not want to "box them in."

And then it was over.

As we headed back to shore, I signaled to Assaf that I wanted to do a summersault underwater. This was not a signal that we had coordinated in advance, but after a few tries he understood what I meant.

It was fun, though slightly disorienting.

I did not want the dive to end, but our time was up.

Afterwards, I asked how far underwater we went. We were only 3-4 meters under water. You can reach those depths from a simple surface dive. But you can't stay down there for half an hour.

I could have stayed there forever, in that magical underwater world.

I mentioned my dream of getting a SCUBA diving license, and Assaf suggested I contact one of several physicians who specialize in SCUBA diving. I think I will.

Because I can't wait to dive again!



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

With love and optimism,
RivkA

* Every diver is accompanied by a licensed diver, who holds on to the unlicensed diver for the duration of the entire dive.

Back to "Normal"

Well, the house is quiet, we have no more company, and life is returning to "normal." (whatever that is)

I am trying to keep within me a piece of the peace and tranquility that I experienced these past two weeks.

I will forever be grateful to my friend, ABH, for taking me away and for giving me such wonderful experiences. I am also grateful to her husband, for making it possible, to her mother, for her support and encouragement, and to her kids, for sharing their mom with me.

I am also grateful to my husband, who made it possible for me to go and who picked up all the loose ends, and to my kids, who graciously let me go and have fun and did not make me feel guilty at all.

It is not a small thing for a mom to "run away." The logistics can be overwhelming. But we did it. And our houses are still standing.

Of course, I have a long list of things to do now. But I would have that list in any case.

Meanwhile, as happy as I am relieved to return to my family, I miss my friend already. It was a real treat to have her around and be able to talk with her about everything!

When she lived here, we used to talk ALL the time (multiple times a day). We would share everything -- little tidbits, interesting experiences, thoughts, feelings, etc. And we would often turn to each other for advice, each of us possessing different strengths, and complementing each others' knowledge and abilities. I miss that.

Having visitors from abroad just makes you miss them that much more when they leave....

For now, no more guests.... until Chanukah, when, hopefully, my brother and his family are coming



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

With love and optimism,
RivkA

General Update -- Life is BUSY!! (Filled with Good Things)

Once again, I have not really had internet access for several days.

Just to put things into perspective, I was away last week for three and a half days (Sun-Wed) and I am away this week for another three and a half days(Sun-Wed). In between, I had my PET scan on Thursday (no results yet), we went away for Shabbat (to friends in Kochav HaShachar), I went to chemo on Sunday (more about that another time), and Sunday night my support group started meeting again!

I guess now I understand why I am so tired!

I am having a wonderful time!

I have all sorts of things to share, but do not have the time to post right now.

I wish I would have thought to have people "guest post." I just was not organized in advance....

Oh well, next time...

Meanwhile, thanks for your patience.

I will try to post when I can, and hope to be back to "normal" next week.

OK, gotta go have more fun now.....



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

With love and optimism,
RivkA