The Next Generation

On the first day of school, a girl from her class approached Y and said "I hear your mom blogs all about you and your family. My father blogs all about me and my family too. You have my sympathies." (loosely quoted from my sketchy memory, but you get the drift)

Three days ago, my daughter called me to ask if she could spend this Shabbat at her friend's home with some other girls from their class. When I asked where she wanted to go, she answered "to A; you know, her father also blogs...."

It is so bizarre when our virtual worlds and our real worlds collide....



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

With love and optimism,
RivkA

Chemo Day -- Herceptin: YES, Taxol: NO

Apparently, a "little break" is one week.

I received Herceptin today, but no Taxol. My next Taxol treatment will be next Thursday.

I was a little nervous about skipping the treatment, but my oncologist was pretty insistent. When I pressed him about it, he offered to give it to me if I was willing to sign a waver, taking full responsibility for any possible complications. I politely declined, to which he responded "I thought that's what you'd say."

So, I will focus on kicking this cold, which is pretty much taking up all my energy and then some.

I felt a bit better this morning, but by the time I got home I was wiped. I went straight to bed and slept for three hours!

At least I got the Herceptin. (This dose was the free dose provided by Roche)

We still hope to make an evaluation before I am due for my next dose, in three weeks.



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

With love and optimism,
RivkA

Cancer vs. The Common Cold

It occurred to me that having a cold might affect my ability to receive chemo tomorrow.

I emailed my oncologist, who wrote back: "come and we will decide tomorrow--sounds like you will get a little break"

What does that mean?

Do I have the nurses open my port as usual?

I am scheduled to receive both Taxol and Herceptin. If "we" (and by "we," I mean "he") decide to postpone treatments, do we postpone both medications? By how long? A few days? A week? What is a "little break?" (To me, a "break" would be at least a month! We know that is not happening, as we have already established (here) that we can not postpone the Herceptin by more than a week)

Last week, my doctor told me that we would evaluate the efficacy of my treatments in the next two weeks. How does postponing treatment affect our ability to evaluate if the drugs are working?

All these questions, just because of a stupid cold, from which, we agreed last year (see here), cancer patients should be exempt!

It seems that when push comes to shove, the common cold trumps the cancer card!



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

With love and optimism,
RivkA

Sick Again

I have a cold… again.

I made the mistake of going to the doctor... again.

I did not have fever this time, so I though I was "safe." I just wanted cough syrup, so I could sleep better. (Besides, I was wheezing, and it sounded spooky)

I might have slept in anyway, but Moshe woke me because he and Y were going to the morning walk-in-clinic and it made sense for me to go with them.

The first thing the doctor on duty did was take my temperature, which was normal. (told you so!)

So, imagine my surprise when the doctor sent me to Maccabi (my health care supplier) for blood work, cultures and an x-ray!

"But I have no fever!" I protested.

The doctor was unmoved.

I grasped at straws, and asked him to try calling my oncologist for confirmation. My oncologist did not answer the phone. The doctor left a message (that helps... NOT).

I asked how irresponsible it would be to just ignore his advice.

As my father always says "If you have to ask, you already know the answer."

Now, it is true that going to Maccabi was certainly faster than going to the emergency room. And, given that I was finished with everything in less than an hour, it might very well have been faster that going to the oncology day ward. BUT, what I really wanted was to go home and go to bed.

Do I really need to do this every time I have a cold?



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

With love and optimism,
RivkA

Haircut

I was hoping that I would be lucky this time too.

Despite a few days of hair loss, most of my hair remained on my head during the past year or so of chemo. So, when my hair started falling out this time, I hoped that it would stop after a few days. (Never mind that my doctor said it would probably not fall out last time and that it probably would fall out this time -- feelings are not rational)

It has already been two weeks, and every day I comb out more hair.

A few days ago, I posted here about losing my hair. I cross-posted on Mothers with Cancer (here). My friend, Mary Beth Volpini, commented on the post:

I read a great saying a long time ago …
”If you don’t know what to do…don’t until you do.”

The simple truth of those words touched my inner soul.

I was not yet ready to say good-bye to my hair.

I was torn. Though I was not yet ready to "cut it all off," I wanted to save part of my hair. I wanted to save my braid, which was getting thinner and thinner every day. I did not want to wait too long.

The other night, I watched several YouTube videos of women with cancer who shaved their heads.

Several mothers chose to involve their children in the shaving/cutting. I thought this was a great idea. When I first suggested it to my girls, they were appalled by the idea. I let it go. Not every good idea is good for every family.

Today, after swimming, I had to ask a friend to help remove all the hairs that fell off and stuck to my back. That was it. When she asked me "why don't you cut it short?" I realized the time had come.

On our way home, I mentioned to A, who was the only child with me, that I wanted to cut off my braid tonight. We talked a bit about our feelings.

"It makes me sad," A said sweetly, "I like your hair."

"Me too," I admitted.

We were quiet for a few moments. Then I asked her, "Would you like to help me cut it off?" Without hesitating, she answered "yes."

When I got home, I told Y that I was going to cut off my braid and that A was going to help cut it. Then I asked her if she wanted to help cut it off too. To my surprise, she also answered yes right away.

I then asked MD, who answered just as quickly "I am not part of this." We all laughed.

I told Moshe, who asked, surprised, "You want to do this now?"

I was hurrying to get ready for a simcha (celebration), but the timing was right.

"I want to do this now," I answered, definitively.

I got our our barber shears and gave them to Y, who began cutting off my braid. Then, she passed them on to her sister. While A was cutting, Y came around to give me a hug. I felt surrounded by love and caring.

It took less than five minutes. I combed my fingers through what was left of my hair.

"It looks cute," Y said. Then she noticed that the ends were not even. She took the shears, studied my face, and evened out the ends. "There," she stated when she was finished. "You should put in some clips to hold the hair out of your face," she added, and ran to get some for me.

And then it was done. I went to get dressed for the simcha.

"Nice haircut," said one of my friends, later in the evening, noticing the short ends sticking out from under my scarf.

I smiled, and she realized why I cut it.

"Still," she said, acknowledging the loss, "it looks good on you."



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

With love and optimism,
RivkA

Support Group -- New Beginnings

After our first support group ended, I was eager for us to meet again. I was excited when I found out that our new group was forming after the chagim (holidays), and that S was going to be our facilitator. I had met S last year, on the Beit Natan winter retreat last year; she made a really good impression. M had been such a skilled facilitator that it was imperative that the person who took the group over would also be highly capable.

I naively expected everyone from our first group to return, and was a bit surprised when only four of us (L, M, T, and me) showed up for the first meeting. C was also supposed to attend, but she was not feeling well (we were all quite concerned about her). There were supposed to be several other new women, ten in all. For each of the first two meetings, only one new woman joined, but did not return.

Tonight was our fourth meeting. L, who had attended the third meeting, returned, and there were two other new women, M & R. C also came, which was really exciting since she had missed all the previous meetings (she was really not well for a few months). So, tonight, we were eight women. It was really nice to finally feel like a group.

We had really good discussions in previous meetings. However, since we were such a small group, with almost no one new, we really felt the absence of the others.

During our second meeting, we shared what we knew about the women from our previous group. P was too tired to come the meetings, Y was not doing very well, and MC chose not to continue because the commute is too difficult (she came from Dimona, almost 2 1/2 hours away). Sadly, I learned that E had passed away. That meeting, we spoke a lot about loss and the challenges of being in an environment, whether it be a support group or the chemo ward, where encountering death is an inevitability. It was a difficult meeting emotionally, though very important. Sometimes we need to allow our fears to come out of the box so we can look them straight in the eye.

Since there were so many new women tonight, half of the meeting was spent introducing ourselves and catching up. The other half was spent discussing how we deal with the unexpected. In particular, how we deal with surprises that force us to confront our disease -- such as the need to go to the emergency room when you just have a simple cold that happens to include a fever. (If you don't understand the reference, see here)

One theme that consistently arises in our group is how to find the ballance between living our lives as "normal, regular" women, and living our lives as cancer patients. For me, this is a constant challenge.

It is difficult for me to accept that every time I have a minor fever I have to go to the hospital (though on normal days, I can at least bypass the emergency ward and go straight to the oncology day ward). It is difficult for me to adjust to the fact that I need to actually take my temperature, and not just rely on how I am feeling. And it is difficult to know that I will spend many "unnecessary" hours in the hospital, just to be "safe."

This is my "new normal." I do not like it. But, it is what it is.

So, I am trying to learn to accept it.



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

With love and optimism,
RivkA

First Thursday

If I would have had chemo last Thursday, then my first Thursday would have been on the first day of the first month of the New Year.

Alas, I did not realize how cool that would be!

Nevertheless, this Thursday turned out to be way cooler than I ever imagined!

I do not know what I was thinking, when I thought I would not know anybody!

First of all, there was at least one other "regular" from Tuesday who changed chemo days for the same reason I did (we have the same doctor....).

Then there was the woman from my support group (oops, that reminds me that I haven't posted about some of the interesting and meaningful meetings we have had) -- she has been a "regular" on Thursdays for EIGHTEEN YEARS!!! (halevai alai!! -- sorry don't know how to translate this one). She is such a positive woman; I am so thrilled to have the same regular day as she does!!

My friend TK also came for her treatment today! She does not really have a regular day, but I am always happy to have a chance to chat with her, and she has the same doctor as I do, so it is likely that I will also see her frequently on Thursdays. She is really my chemo buddy, and I get a tremendous amount of insight, information and support from her!!

I had the privilege of sitting next to a relatively new friend, LS, who just started chemo today! We met a year and a half ago on Thanksgiving, at a mutual friend's home and reconnected this summer when the same friend hosted a poetry reading in honor of her mother's yarzheit. (Our friend's mom used to host poetry readings, so our friend thought it would be fitting to honor her mother's memory in this way. It was a VERY special evening. Anyway, I had a very nice chat with this woman, and, among other things, mentioned my blog to her). When LS received her diagnosis, she looked up my blog and found it very supportive. We emailed, and I directed her to another site, my communal blog Mothers with Cancer, that I thought might provide even more support. It did!

But that is not all. No. No! That is not all!!

There was another woman, who came once to our support group, but hasn't been back since, because she lives in Emek (the valley of) Beit Shean, which is really far away!! She comes twice a month to Jerusalem for chemo, but does not have a regular day. I hope she will continue with our group, but it is not looking so likely....

And there was the relatively young oleh from Argentina, who I know from Tuesdays, and was there today as well, though I don't really know if he has a regular day or not.

And there was a nice, older gentleman, whose wife and I used to work in the same building, oh, so long ago. He was also a Tuesday regular. So, it is highly possible that he switched days as well.

And there was another woman, who I met years ago, also through work. She was there keeping a friend of hers company. It was nice that she came over to say hello.

Not to mention that I met another two "new" women.

So, all in all, there were plenty of people to "meet and greet."

Of course, I also had the pleasure of a really fun chemo date today.

So, the fact that I did not even start receiving my treatment until after one in the afternoon, and that I had a reaction to the chemo (it made me HOT!!! or, as A would say, I was BOILING!!!), which made the nurses slow down the infusion, so that I did not finish until almost FIVE, all did not really matter!

I had a really nice time! (Would you believe it?)

At the very end, it was just me, my chemo date, and the nurse on duty, and we all hung out together. No one else was left, so the nurse sat down with my friend and we talked about religious girls' high schools and various other topics. It was a nice opportunity to get to know this nurse better, as she is relatively new to the ward. I will also mention that she did not hurt me at all when she removed the needle from my port!

A word about this particular nurse on duty: A few months ago, just before she gave me my bone treatment, she noticed that the medications were labeled incorrectly (we will never know if someone just wrote down the wrong info or if the actually prepared the wrong drugs for me). The nurse immediately called the pharmacy and sent the drugs back. I really appreciated her care and diligence. It is nice to know that she was so careful about my treatments!

On the way out of the hospital, we ran into Moshe's cousin, who happens to be the internal auditor (מבקר פנים) of the hospital. I made sure to tell him about my appreciation of the staff, I told him the previous story about this nurse, as well as about the efforts made on my behalf during Hanukkah, and how that made me feel. I do not really know what he does, but is sure sounds important...

As I was talking to him, one of my favorite nurses passed by and asked, with good humor, if I was complaining about things. Moshe's cousin smoothly noted that, on the contrary, I was singing their praises. She seemed surprised, given the time I was leaving! I then mentioned that this was Moshe's cousin. Then I worried that maybe that wasn't a good thing -- after all, I don't want everyone to be afraid that I will report them. ...Though maybe that isn't such a bad thing either. Anyway, what's done is done.

I was exhausted when I got home!! But I could not sleep because we had a wedding tonight!

I chopped (snuck in) a few minutes with my kids before I ran off to get ready.

We just got home. Okay, we got home over an hour ago. But I had to check my email!

Now that I have done my "blogging duty," I can go to sleep!

(And I did not even mention the war!)

Good night, dear friends. Thanks for holding my hand through this transition!

May all the changes in our lives be so smooth!!



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

With love and optimism,
RivkA