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Friday, December 5, 2008

Tag, I'm It!!

I've been tagged by Hadassah Sabo! YAY!! I have not been tagged since I was, like, seven!

Here are the rules:
1. Link to your tagger and list these rules on your blog.
2. Share 7 facts about yourself, some random, some weird.
3. Tag 7 people (if possible) at the end of your post by leaving their names as well as links to their blogs.
4. Let them know they have been tagged by leaving a comment on their blogs.

Seven facts about me:

1…I was really shy and extremely quiet in elementary school. (hard to believe, but true!)

2…I started teaching swimming when I was 12! (I've been teaching swimming for 30 years!)

3…I attended the A-School (Teaneck's Alternative 1 High School) and graduated with the most college classes taken by any high school student in the history of the A-school (you bet I'm proud!)

4…I have a green belt in Judo. (don't mess with me!)

5…I had a pet deer that lived in the forest and came when I called. (fantastical, and true!)

6…My picture is in a book. (leading a sheep along the streets of Jerusalem)

7…I LOVE games!! (come over and play sometime!) (WARNING: I can be quite competative! I am a good loser, but I like to win!)


Cool. I'm tagging (in alphabetical order):
A Living Nadnedah
Beneath the Wings (Ricki's Mom)
Esa Judita (Lena)
I Can't Complain Any More than Usual (Stella)
Juggling Frogs (who was tagged already, but didn't play, so I'm tagging you again!!)
Purple Crazed Woman (Engineering Goddess)
Supperraizy


Tag, You're It!!




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

With love and optimism,
RivkA

Thursday, December 4, 2008

Today's Outrageous News

So, I contacted Roche and it is true -- they provide the fourth bottle for free.

Not only that, but if I purchase the Herceptin from Roche, it costs 10,895 NIS per bottle (saving 326.85 NIS per bottle).

BUT, this afternoon, Roche called and told me that the head of the pharmacy department at Sha'are Zedek will not allow Roche to supply the Herceptin without charging an additional fee.

The Roche representative informed me that this has been the policy at Sha’are Zedek for years, leaving me with two options: either purchase the Herceptin at the higher rate, or switch hospitals (other hospitals do not impose an extra fee on patients who are purchasing their medication privately).

Switching hospitals is obviously not an option.

Before I take any further action, I want to verify this outrageous allegation. If true, it is absolutely immoral.

Meanwhile, I am in a lot of pain and seriously tired.

I think the new chemo is catching up to me...



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

With love and optimism,
RivkA

Wednesday, December 3, 2008

Crazy Days

So, I got the Herceptin today.

Even though my port was still open from yesterday, it was still a long day. I waited almost an hour for the Herceptin to arrive in the department, and then it took almost four hours to receive the dose. When I tried a faster drip, I had chest pains, so I had to slow it down. (I wanted to see if I could take the drip faster, so I would not have to come in twice on Hanukkah -- which is the next time I am due for both Taxol and Herceptin)

Anyway, I was definitely more relaxed than I was yesterday!

Later in the day (after I got home), I heard that if you purchase the Herceptin directly from Roche Pharmaceuticals, they provide the fourth dose free. I hope to confirm this tomorrow.

Why is it so difficult to find out this information in advance???

I was so tired when I got home, but I could not rest. I had to feed my kids, then take my son to an appointment. Then, when we got back home, I had to feed my kids dinner and get them ready for bed.

Moshe was still at work, because he is putting together a file of my medical records in digital form.

My son went to bed early. When he realized how early it was, he wanted to get up. I suggested that maybe, if he was already reading in bed, he was tired and needed to rest. He said he wanted to make use of his time. I said, "that's a great idea, you can clean your room." He answered "I want to go on the computer." (surprise, surprise). I reminded him that he was not allowed on the computer at this time, and suggested, again, that he could use this time to clean his room. You never saw a kid pick up a book so fast!

I tucked in my son and... left for a Va'ad Horim (PTA) meeting at my daughter's high school. I felt a little more ba'inyanim (on top of things) at this meeting. (I know it's hard to imagine, but I was a little overwhelmed by the powerful presense of the other parents at the first meeting)

By the way, my late night talk with my daughter last night was mostly about how she LOVES her high school. She's been there for only a few months and already feels like she can do ANYTHING she wants! It is absolutely wonderful for me to see her so happy.

Even though I was tired, I had a really nice chat with one of the moms after the meeting.

I finally arrived at home at close to midnight. Moshe was (is) still working on my medical file. I made sure my kids were all tucked in and kissed them goodnight. They are so beautiful when they are sleeping!!

A few moments spent blogging and... I'm off to sleep!

I really do lead an insane lifestyle!



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

With love and optimism,
RivkA

Tuesday, December 2, 2008

Medical Update: Day 1 -- Taxol

I was noticeably anxious.

First, I overslept. I wanted to arrive early, and instead I arrived late. (It was not that bad, we arrived at around 9:20, instead of our usual 9:00)

Then, the nurses told me (and my doctor) there was no way that I could receive both Taxol and Herceptin on the same day because I would be there for over 10 hours (the oncology day ward is not open that long). I would need to take one drug today, and another tomorrow.

Great. (Not)

Today was the deadline day for taking Herceptin without a loading dose. Nevertheless, the nurse who handles prescriptions (who I highly respect) recommended starting off with Taxol, so there would be a full week in between doses. The doctor agreed with her logic, and thought the difference in waiting one day for Herceptin was insignificant.

The doctor explained that the delay would not negate the affect of the Herceptin; at most it would take longer for the Herceptin to build back up in my system. My concern was that the delay might affect our ability to evaluate the efficacy of the drug. I was especially unsettled because the Herceptin is being paid for by private donations, and I am highly sensitive about not wasting someone else's money.

The deliberations made me even more anxious. My doctor left the final decision was up to me; we would do whatever made me feel most comfortable. I did not know how to decide. Moshe suggested that, since I am not a "bureaucratic statistic," we follow the doctor's and nurse's instincts. I felt really stressed about the decision. The doctor looked directly at me, and gently suggested I relax. I looked right back at him and said "I am very anxious."

"I know," he responded, softly, "Relax. It will be OK."

He did not diminish my concerns. He acknowledged the many facets of this issue, and gave me the space to choose whatever path I preferred. I focused on my breathing and agreed to take the Taxol first.

When I went to open my port, the nurse took one look at me and asked "where is your smile?"

Afterwards, when I went to wait with a cluster of the "regular" ladies, there, too, several women asked me what is going on.

I did not realize my feelings were so easily displayed on my face.

I have been coming to chemotherapy for almost a year and a half. I often receive heart-warming comments welcoming me. After not seeing me, during the chagim (holidays), one woman told me that she really missed me, that I am like a ray of sunshine.

Today, when everything weighed so heavily on my shoulders, (the finances, starting a new drug, the overall uncertainty), I finally understood that I really did bring joy and laughter to the chemo ward.

One of the nurses came to tell me that I would need a bed. The head nurse had told me that last week, so I already staked out a bed when I first arrived. (another reason I wanted to get their early was that I know that beds are often taken quickly, and I did not want any hassles. "The early bird gets the worm" and all that... Thank God, there were several beds available when I arrived. I was even able to choose a bed in a room with two other women). The nurse hooked me up, and led me to the bed.

I was getting the first of three medications to prep me for the Taxol. The first was Fenergan, a super-duper antihistamine that totally knocks you out. The second was something to protect the digestive tract and the third was something to prevent nausea. Only after these three infusions would I receive the Taxol.

I had brought a book, but realized that the Fenergan made it impossible to concentrate on reading. I noticed a TV, thought I would watch for just a bit, to relax. The sound was off, as Moshe adjusted the TV channels. When we found a program I liked, we discovered there was no volume, even when Moshe raised the volume to maximum. We tried to find a program that I could follow the Hebrew subtitles (not easy for me, at all). When Moshe flipped through the channels again, we discovered that some of them did have sound, and maximum volume was LOUD!! Moshe immediately lowered the volume, but not fast enough! My roommates started yelling at us! (So much for relaxing!) We apologized profusely, as Moshe continued to mute the TV. Then, slowly, Moshe started raising the volume. At that point, one of the ladies (the daughter a patient), started yelling again! She needed complete quiet so that she could study! Moshe was even more taken aback than I. Very quietly, he asked me to ask a nurse to deal with this. When I related what happened to the nurse, she insisted that patient's needs come first. So Moshe raised the volume just barely enough for me to hear. The woman then started talking loudly with her mother, but I couldn't understand what she was saying since they spoke in Russian. It was probably better that way. (What was that about relaxing?)

I waited for the room to quiet down (I realized that if I raised the volume, they would just talk louder), when one of the volunteers from the Yuri Stern Foundation came in to offer me a massage (reflexology). By then, I was already feeling slightly woozy. When I started to get up, to go into the massage room, she said she would treat me in the bed I was in. Yeah.

We spoke a bit, before she started, and the subject came up about my teaching swimming. I could feel myself transform, just talking about it. The tension left my shoulders and I smiled. I could feel the spark return to my eyes. After a few minutes, she and I smiled. I could feel the spark return to my eyes. After a few minutes, she left to get her things.

She came in, closed the curtains and turned off the TV. It was so nice.

I was just starting to drift in and out of awareness, when my doctor came in. We spoke briefly, but I was already on my way "out." My speech was slow and it was difficult for me to focus. Thankfully, I did not have many questions.

The doc left, the massage ended, and I drifted off to sleep. I slipped in and out of sleep for the rest of the day.

My friend came around 2:30. I cancelled our "chemo date" because I was told that the Fenergan would put me to sleep. But she still came to pick me up and take me home. I finished around 3:00 and was home by 3:30.

I ate a late lunch with my kids, then collapsed back into bed until dinnertime. After supper, I thought I would just quickly blog something, then go to sleep. ("The best laid plans...."). I had two, separate, meaningful conversations, one with Moshe and one with Y. Both talks were really worthwhile, though my talk with Y was particularly special.

The Fenergan must be wearing off, because I am starting to itch. I'm still tired....

It's time to go to sleep.



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

With love and optimism,
RivkA

Monday, December 1, 2008

Anonymous Angels

Tomorrow, I start Taxol.

I am anxious about the side affects. But there is no way to know how I will react.

I am trying to remain open-minded and relaxed. Easier said than done.

Nevertheless, what will be, will be.

I will also be receiving Herceptin. Tomorrow is the latest that I can continue taking Herceptin, without needing a "loading dose." My health fund, Maccabi, denied our initial request for coverage.

I am putting together an appeal, which we will send to the ombudsmen of Maccabi and the Health Ministry.

Meanwhile, some anonymous angels are taking care of me, and making sure that I get what I need.

My regular dose is 570 mg, and Herceptin comes in 440 mg bottles. So I need two bottles tomorrow. Leftover Herceptin can be used for up to 4 weeks. So, in three weeks, I will need only one more bottle. Essentially, I need 3 bottles, for every 2 treatments. Each bottle costs 11,221.85 NIS (approx $2,805). (Herceptin costs even more at this government approved pharmacy, which sells drugs that are not covered by the health funds)

Several years ago, when I had the opportunity to purchase private insurance covering medications, I decided to forego that added expense. After all, I thought, how expensive can medications be?

Little did I know....



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

With love and optimism,
RivkA

Saturday, November 29, 2008

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

Wednesday, November 26, 2008

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