Shoes, Shoes, and more Shoes

(You can read about how much I love shopping in general, here and here, and how much I love shoe shopping in particular, here and here)
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Well, you already know how much I love shopping……. NOT!

So, what can be better than shopping? Shopping when I am sick!

Yesterday, my eldest informed me that we had to go shopping for sneakers on Tuesday, because her sneakers had a hole on the bottom and on Wednesday morning she was leaving for massa Pesach (a two day hike with her youth group).

Great….

I so wanted to tell her that I could not do it. But she had a HOLE in her sneakers! Even I recognized that as a legitimate reason for new sneakers.

So, this morning, I dragged myself out of the house and took her to Talpiot, an industrial neighborhood with both upscale and discount stores.

Our first stop would be a surplus store that often has good prices, but the salespeople are unpleasant.

My daughter asked why I was not boycotting the store, since there are several places that I boycott due to outrageously offensive treatment by their staff.

I explained that my only alternative was to either spend a lot of money on shoes or to spend at least an hour (maybe more) crossing town to Givat Sha’ul, another industrial area, on the opposite side of town.

Perhaps if I was feeling well, my principles might have driven me across town, but not today.

So, we entered the store, ignored the smoking staff at the entrance (totally illegal, by the way, and usually enough to make me walk out of almost any store), and went to the back of the store where there was, thankfully, no smoke, and many sneakers.

The sneakers were 2 for 100 NIS, for good quality sneakers. Probably last year’s styles, but that does not really bother us. My daughter is fashion conscious, but not unreasonable.

We found 2 pair that my daughter liked, in record time! (YAY!)

Then, as I was returning the shoes that did not fit, I noticed a pair of sneakers in her size with those wheely things underneath. (You know, those retractable wheels. I am sure there is a name for these types of sneakers, but I am clearly not cool enough to know what it is!) (A quick search of the internet reveals the name "Heelys")

Anyway, they fit and they were fun, so we decided to take them as well.

There was also a cute pair of boat sneakers on the clearance rack that we picked up, ‘cause they were cheap enough (29.90) that it would have been a shame not to take them. I know my daughter will wear them.

So, we arrived at the checkout counter with four pair of sneaker and discovered that the owner was just as unpleasant as we had remembered!

He would not give us the third pair at the discount price, which was annoying but understandable. But when I asked him to hold the third pair until I could bring my other kids to find another pair to purchase together, he was totally obnoxious.

At first, he insisted that he could only hold the shoes for two hours!! I mean, what is that?? I knew that I would not be able to return to the store until the next day. Eventually, he did agree to hold the shoes until the next morning, but why did I need to argue for that??

Just as we finished negotiating, an Arab woman approached the checkout counter. She also wanted just one pair of shoes. I suggested that we make the purchase together and she agreed.

Interestingly, the owner did not hassle us about that at all, and allowed us each to pay for our purchase individually. As he bagged the shoes, he might even have passed for pleasant.

I will never understand Israelis!

Total cost for four pair of sneakers (3 Spalding, 1 Lee Cooper): 179.90 NIS.

Total time: 1 hour and 15 minutes.

Not bad.

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When we left the store, the Arab woman walked in the same direction as us. It turned out that she was parked next to us.

She smiled at me and waved me over to her. At first I was not sure what she wanted. Then I realized she was asking me to help pull her car out of the parking space, as she is a new driver. It is difficult to pull out from those spaces, both because of the angle of the parking spaces and because you have to pull out into oncoming traffic (might I add, discourteous oncoming traffic, that is often very unaccommodating to cars trying to pull out and, God forbid, get in front!).

I went to stop the traffic for her, to give her time and space to pull out, but she still did not get into her car. I was confused, and a little embarrassed about stopping the cars for nothing.

I finally realized that she wanted me to actually get in her car and drive it out of the space.

I got behind the wheel and spent a few minutes inching my way out of the parking space, with her standing outside, nervously worrying that I was going to hit another car. (I should have suggested that she help by stopping the traffic!)

I was happy to help, though it did mean that I had to undergo that unpleasant experience twice!



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

With love and optimism,
RivkA

You Know I'm Really Sick When....

I cancel swimming lessons!

I debated all last night and all this morning. I knew what I should do, I just did not want to do it. So, I put off the decision until the very last minute, hoping that I would miraculously get better and be able to teach swimming.

I have been sick (AGAIN!), since last week. No fever, nothing horrible, just a non-stop runny nose and a post-nasal-drip cough (the cough sometimes seems a little too deep in my chest -- if I am not better by tomorrow, I might actually go see a doctor). Oh yeah, and on Shabbat I had no voice (again!).

Anyway, I knew I really should cancel swimming lessons, but I really did not want to.

Eventually, I just could not ignore the fact that I still had only half a voice, my congestion was driving me crazy, I still had somewhat regular coughing fits, and I just plain did not feel well!

So, I emailed and called all my parents. to let them know that we would not be having any more swimming lessons until after Pesach (Passover). All my parents were supportive and understanding, as I knew they would be. But I was still bummed.

I knew it was the right decision, but I did not like it. In addition to everything else, I am getting chemo a day early and need my blood count to be good. Also, Pesach is in a week and I don't want to spend it sick in bed!

So, I did the responsible, grown-up thing to do.

Now, I am going to crawl back into bed with my tissues and a good book!





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

With love and optimism,
RivkA

Medical Update -- Markers & Pain

My apologies for not providing this update sooner.

My markers are down!

Really down.

For months, my markers were on the rise. And they were climbing high! That, combined with a significant and steady increase in pain, was the main indicator that my previous chemo regimen was not working.

Almost as soon as I started on Taxol (in December), my markers started coming down.

About a month ago, they finally reentered the "normal" range.

The most recent tests indicated that they were still in the normal range, and even lower than the previous results.

This is great!

Regarding pain, things are a little less clear cut. At first, the Taxol seemed to have a substantial effect on my pain as well. For a brief period, I stopped taking pain killers regularly. The respite did not last long. Significantly, when I did need pain killers, I still needed to take both Optalgin and Algolysin.

These days, in addition to back and hip pain, I have pain in my lower rib cage, increased sensitivity in both shoulders, and pain in my neck.

Currently, I take pain medication 2-4 times a day. Occasionally, I need to augment the pain meds. Usually, half a Percocet is enough.

I still do not like taking drugs.



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

With love and optimism,
RivkA

Chemotherapy Induced Time Travel

My son and I were sitting down for an afternoon snack together.

Suddenly, I had a major hot flash!

I explained that my drug induced menopause caused it. I then elaborated that women usually go through menopause around age 50.

"You mean," my son asked, with a twinkle in his eye, "you went forward in time?!"



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

With love and optimism,
RivkA

Slowing Down and Letting Go

Tuesday morning, on our way to the brit (see previous post), Moshe casually mentioned that he was "surprised that [I] did not get up this morning."

When I wondered why, he reminded me that our eldest left that morning for a three day tiyul (hike).

"You always used to get up with them," he continued,"even for a short, one day trip..."

He was right. In the past, whenever one of my kids had a tiyul (hike), I would get up early (no matter what the hour) and make sure they had everything they need (this is after helping them pack their bags and giving them treats the night before). Then I would remind them to be safe and stay close to the madrich (guide), give them a kiss and hug, and send them on their merry way.

I do not think I ever missed saying goodbye on the morning of a tiyul... until this Tuesday.

Tuesday morning's activities penetrated the fog of my sleep, but only ever so slightly.

I was too tired to wake up. By the time I finally opened my eyes and called for my daughter, they were gone. I felt a moment's disappointment before I rolled over and fell back asleep.

I did not know how to respond to my husband. I knew he was not trying to make me feel bad. And I knew that I did not need to feel bad. Moreover, I knew that my daughter would be fine (and that I had helped her with everything she needed the night before).

Still, I missed saying goodbye to her.



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

With love and optimism,
RivkA

Slow Down!!

I have been on "fast forward" since the Tupperware Party and my battery has burned out!!

Most of last week was spent preparing for the party on Wednesday night. It was great! But, boy, were we all tired by the time it was over!!

"No rest for the weary!!" (I don't know where that quote is from, but my mom says it all the time!)

Thursday was a LOOOONG chemo day -- with all three drugs and a full body x-ray*! No rest when I got home either! First, my eldest interviewed me for her "avodat shorashim" (family research project). Then everyone needed something and Moshe had to work late.

Friday morning, I was up and at 'em, bright and early (for me). We were off to Be'er Sheva to celebrate the brit (circumcision) of R&R's son.

Clever me, I arranged to spend Shabbat with other good friends in Be'er Sheva. So we only had to drive one way on Friday. We spent Shabbat with Sarah, who blogs over at Chronicles of an NF Survivor, and her family. (Sarah and I have been friends since we were single, well before either of us had any serious health issues. You know, when we were young and going to live forever!!)

For over a year, we have been trying to get together for Shabbat. For one reason or another, each time we set a date, one of us had to cancel. This time, at the last minute, everything came together!

After the brit, I baked chocolate brownies with Sarah's ADORABLE kids! I never bake, but since this was my only responsibility, I had so much fun!!

Then, I helped cut vegetables for sushi (YUMMMMM) and hung out with Sarah as she rolled and cut a lot of sushi. Kitchen work is not nearly as tedious when you have company!! But it still takes time!!

Friday evening, Sarah and I hung out while our husbands, and her kids, were at shul (synagogue). (My kids had made their own Shabbat plans. My youngest was brutally honest when she declared "we don't want to spend Shabbat with your boring friends!")

After Friday night dinner, both Sarah and I were ready to crash. Before heading off to bed, we went out to walk the dog.... the night air was so pleasant.... when we got back home, we sat for just a few minutes on the porch.... boy, were we surprised to discover that we talked 'till 1:00 in the morning!!

I slept in on Shabbat!!

Lunch was leisurely.

It was late afternoon when R (the ba'alat simcha, i.e. mother of the newborn) knocked on the door.

"You're still in the middle of lunch?" She asked, eyes widened in surprise. She had waited long enough, or so she thought, for us to finish lunch and our Shabbat afternoon nap!

After lunch, Sarah took a nap and I hung out with R 'till the end of Shabbat.

I had such a great Shabbat!! But I didn't get much sleep.... Who wants to waste time sleeping? I had to talk with my friends!!

Saturday night, my wonderful sister picked up all my kids and brought them home. Meanwhile, Moshe and I went from Be'er Sheva to Beit Shemesh, to T&JG, for a Melaveh Malkah. (religious term for a Saturday night get-together/party!)

Don't ask me what I did on Sunday. I don't think I did anything. The day passed in a kind of haze.

Monday morning, I got up and began my day... then changed my mind. At 9:15 I went back to bed and did not emerge from my slumber until 12:15, when the phone rang five different times!!

I taught swimming Monday afternoon. Then I went to bed. (OK, not right away, but plenty early for me!)

Tuesday morning (today), Moshe woke me up.

"I can't move!" I mumbled.

He reminded me that we had a brit and that I asked him to wake me up. I wanted to wake up, I really did, but I could not. I realized that I just had to slow down! My body could not keep up!

"I have to sleep," I muttered, "I'm sorry."

Within seconds I fell fast asleep.

When I woke up, Moshe was still home. There was still time to make it to the brit. We dashed out of the house!

I have to slow down... but not that much!!



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

With love and optimism,
RivkA


* Every 25 weeks I have a full body x-ray as part of the bone drug (Zomera/Zometa vs. Denosumab) research.

BRCA Genes -- How Do They Fit?

Have you been tested for the BRCA gene mutation? If so, a local journalist is interested in interviewing you!

Please contact Laura Kusisto at 052-689-0958 or Laurakusisto@gmail.com
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Knowlege is power.

The more we know about our bodies, the more informed our choices about our health care.

I come from a family with a history of breast cancer.

When my surgeon first suggested I test for the BRCA genes (pronounced "BRA-ka"), my mother advised against it. She was concerned that, in the US, if you test positive, the results can affect your insurance coverage. (I do not know if this still true)

I do not live in the US, nor do I have American medical insurance. However, in deference to my mother, I did not get tested.

Until I was diagnosed with breast cancer in the summer of 2005.

All of a sudden, knowing the results of the BRCA test had far wider ramifications, they would determine my health care decisions.

The 3 most common gene mutations which cause breast cancer among Jewish Ashkenazi women are found on the BRCA1 and BRCA2 genes. Not only do these mutations lead to higher incidence of breast cancer, they also lead to higher incidence of ovarian cancer.

Today, we have excellent early detection methods for breast cancer: annual mammograms, bi-annual manual exams by a surgeon, and, of course, monthly self exams.

Unfortunately, the same cannot be said for ovarian cancer. Often, by the time ovarian cancer is detected, it has metastasized and the prognosis is not great.

Women who test positive for the BRCA mutation are advised to have a profilactic oopherectomy (removal of ovaries) by age 40.

I was 39. And a half.

Though I was was tormented about what surgery to perform on my breasts (lumpectomy, single mastectomy, or bilateral mastectomy), I knew that if I tested positive, my ovaries were coming out.

To my surprise, I tested negative.

Given my family history, I knew that I had a genetic predisposition for breast cancer.

I worried that perhaps I had a less common mutation on one of those genes; I wanted a full sequencing of the genes.

The geneticist as Sha'are Zedek patiently explained that full sequencing is not done because other mutations are so rare that there is no justifying the cost of full sequencing (several thousand dollars, if memory serves me correctly).

Furthermore, scientist know there are additional genes that are associated with breast cancer.... these genes just have not been identified yet. It is far more likely that I had a mutation on one of these other genes.

So, for now, the ovaries were staying in.

Several months later, the geneticist contacted me. Prof. Ephrat Levy-Lahad, the head of the genetics department, began a new research project, searching for these additional genes. Would I be willing to particpate in her research? (Is the sky blue?)

I did not need to do anything. They could use the same blood sample.

As part of the research, they would do a full sequencing of my BRCA1 and BRCA2 genes, to eliminate any possibility, no matter how remote, that my breast cancer was caused by a less common mutation on those genes.

The full sequencing took over a month. Eventually I received the results. This time, I was not surprised by the negative results.

Now, I am waiting to see what the new research reveals...



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

With love and optimism,
RivkA