Medical Update -- Side Effects of Taxotere

This past Thursday, I got the Herceptin but no Taxotere, to give my GI (gastrointestinal) track a rest.

Next week, I will resume the Taxotere, but in a lower dose. Hopefully, the lower dose will resolve, or at least dramatically reduce, the GI upset (read: diarrhea).

The previous week, I took Loperamide (Imodium) almost daily to resolve the upset. It worked, but it would be better not to have any stomach upset. Apparently, in addition to the dangers of dehydration, there is some risk of infection associated with diarrhea.

I guess I expected this week to pass smoothly without the Taxotere. Unfortunately, this morning (day 3) I had an upset stomach again. I immediately took two Loperamide tablets.

I really feel rather sorry for myself about the upset stomach thing.

Isn't it funny the things that bother us?


Meanwhile, the neuropathy caused by the Taxol seems to have disappeared from my feet. I am not sure what is happening with my hands. My right hand feels ok, but my left hand feels sluggish. I cannot tell whether it is leftover neuropathy caused by the Taxol, or new neuropathy caused by the Taxotere. I think it is getting worse, which makes me think it is the latter.

With the Taxol, my fingers felt "pudgy." Now the whole hand just feels like it is not working right, like it is "slow" or "sleepy."

I think there is something wrong with my sense of touch.

In addition to the loss of dexterity, especially in my left hand, I have also lost strength in my hands (both of them). I still find it difficult to open bottles and often need to ask for help.


It took over two weeks for the cuts on my tongue to heal after I stopped the Taxol. The sensation has returned, though much milder. I drank lemonade and the acid did not make my tongue burn.


So far, none of these symptoms is enough to stop the Taxotere.


Meanwhile, I just submitted a request to the kupah (health fund) for a PET scan (PET CT). It has been six months since we last did a full scan to see what is going on inside my body.



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 -- 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

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

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

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

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

Medical Update -- Side Effects of Taxol

Tired all the time

Split nails

Feet are tingly

Left foot is a little numb, especially around the toes and the ball of my foot

Menopause 10 years too soon, including HOT flashes and night sweats

Keep getting colds

Hair is falling out (slowly)


I could post about all of these things, but I thought I'd sum it up for now....



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

With love and optimism,
RivkA

The 20-Year-Plan

Something has been bothering me for a while now.

A few weeks ago (or maybe it was a few months ago), during one of my meetings with my oncologist to discuss switching to Taxol, I casually asked if this change is going to "interfere with my 20-year-plan."

My doctor immediately became serious. "Who gave you that number?" he queried, adding "I did not give you that number."

"I know," I responded, reassuringly.

I completely made up that number. It is a random number, representing my intention to live with this cancer-thing for a long time.

But then, I got worried.

"Why," I challenged, joking, "is it too short?" Then, I added, verbalized my fear, "Or is it too long?"

But my oncologist would not play that game.

"I do not do numbers," he declared, quite seriously, "You know that."

I do. But the Pandora’s Box was open. Perhaps I was just living in my own little fantasy world.

So, today, I got up my courage and asked, "Am I deluding myself?"

Now, though this conversation has been plaguing me for months, it was not immediately obvious to my oncologist that I was referring to his comment about my 20-year-plan. So, I reminded him of our conversation and, a little bolder now, repeated my question. "Am I deluding myself?"

"It's a bit of a long shot," began my oncologist. (ouch) I imagine my face fell a bit. "I am not telling you something you do not know;" he continued, leaning forward in his chair, eyes locked on mine, "you are familiar with the statistics. But you also know that I do not make predictions." (yeah, I know)

He cited a patient of his who has been living with metastatic breast cancer for 23 years. (He did not give me any details, of course)

"It is reasonable," he continued, a bit softer, "to plan for the future."

And, though it is unusual for him to give his opinion about what I should do, he added, "I think it is right to live your life that way."

I wish I could remember exactly what else he said, because he gave me a rare compliment about how I am handling living with cancer exceptionally well. It was really nice.

Then he asked me: if I knew I had 18 months left to live, would I do anything different?

I said I would get things in order. To which he responded, quite sternly, "you should do that anyway, and it has nothing to do with cancer."

Then he continued, "my guess is that if you knew that you had only a year and a half left to live, you would accelerate your lifestyle, not slow it down."

I conceded that his assessment was accurate. But still, I persisted. "I talk with my children about the future, even about the long-term future."

I wanted him to understand that it was important to me not to be deluding myself, and also not to be deluding my family.

He got it.

"Planning for the future is the best thing you can do for both you and your children."

He wanted to make sure that I got it too.

I got it.



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

With love and optimism,
RivkA

Chemo Day -- no more short days?

This past Thursday:

Got there before 9:30.

Didn't start treatment until at least 12:30.

Didn't leave until after 4:30.

It was no one's fault.

There is something wrong with my port -- it is supposed to support "two way traffic," but is currently working "one way only."

For several weeks now, the nurses have not been able to draw blood from my port. That means that every time I go for chemo, I get stuck with needles twice -- once to open my port, and a second time on my arm.

In the past, I did not mind so much, because the person who took blood was expert and did not hurt me. But he recently suffered a heart attack and, though he is doing well, he is still on leave. I am always anxious about new people drawing blood from me. I have difficult veins, and often suffer from pain and buising if the person who draws blood is not really good.

The woman who manages data from the bone study research arranged for me to seen by a doctor who, she assured me, was also good at drawing blood. The doctor drew blood (painlessly!) and also injected half a dose of urokinase into my port. Urokinase, a blood thinner to dissolves clots that might be in the port, has to be approved and administered by a physician.

The protocol is to wait at least an hour after the injection before using the port. It also takes about an hour for the results of the blood test to come back. That day's treatments (in this case the Taxol and the Zomera/Denosumab) are only ordered AFTER the blood tests come back okay.

Everything takes time.



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

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

Hair Today, Gone Tomorrow?

A week ago, after swimming, I sat in the locker room combing out my hair.... literally.

As I combed, more and more hair came out in the comb.

It took me a few minutes to realize what was happening.

A few weeks ago, I commented to my oncologist that my hair did not seem to be falling out and, perhaps, I would not lose my hair this time either.

"Don't count on it," he responded, matter-of-factly.

I still have not figured out what I want to do.

I am reluctant to just "shave it all off," since I have met women who did not lose their hair with Taxol.

Some women just lose the hair on their heads; others keep the hair on their heads but lose their eyebrows and eyelashes; other women lose both; some women lose ALL their hair (including the hairs on their arms and legs).

I had always thought that I would be one of those bold women who just shave everything off. You know, the "get them, before they get you" approach.

If I knew for certain that I would lose it all, then that is what I would do. But I don't.

So I am waiting is out. Holding on to what is left. And wondering, if it all falls out, will I ever have red hair again....


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

With love and optimism,
RivkA

The Power of Appreciation

Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukkah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a "Certificate of Appreciation." It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don't happen on their own in the chemo ward. There is so much that goes on "behind the scenes." The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. "For what?" she asked. When I told her, she laughed and said, "That's history; it's already forgotten." After all, they have done so much more since then.

"Well, I did not forget," I answered back, laughing along with her, "For me, it was a big deal."



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

With love and optimism,
RivkA

"Losing It" or "Do You Love Me Enough to Drive Me in the Morning?"

Today, for the second time since I started the new chemo regimen, I was scheduled to receive both Herceptin and Taxol and the bone drugs. The last two weeks, I only got Taxol, and I finished really late both times. I did not want to come twice to the hospital, like I did the first time I got both treatments (and I did not need to get the bone drugs then).

So I told everyone (my doctor, the nurses, the research staff) how important it was for me to get both treatments today, so that I would not have to come in a second day during Chanukah. My kids are home from school and I want the time with them!

Everyone helped. I can't begin to list all the people who went above and beyond the "call of duty" to make it work.

I arrived at 8:40 (early for me), and I finished chemo around 4:40. Most of the staff left by 3:00 (it is Chanukah, after all). Even the nurse who was on duty until the end was patient and pleasant.

I got home after 5:00 and I was exhausted! (Also still a little woozy from the antihistamine) I wanted to eat a bit, light candles and go to sleep. Ha!

My eldest daughter wanted my help; so I dropped everything to help her. What I thought would take just a few minutes of problem solving, revealed a much greater problem (which she had created during a "teenage moment" yesterday). Though I was still upset with her about that particular "teenage moment," I tried to help solve the current crises. However, in the middle, as I was asking for her help to solve her problem, she had another "teenage moment." I had already solved the major problem and was now working on the original, relatively minor, problem (she really wanted a ride in the morning, at 7:00).

At first, I handled myself well. I stopped what I was doing and calmly told her that she behaved inappropriately to me and I would no longer be helping her to solve this particular problem (it's not like there was no way for her to get where she needed to go; she could take a bus).

Had I stopped there, she would have been upset, but I would have done the right thing.

Unfortunately, my kids know how to "suck me in!" Within seconds, I was dealing with a whiny and demanding child.

That is when I lost it.

Boy, did I yell at her! All my frustrations about yesterday's incident, combined with today's incident, combined with the fact that I was exhausted and still taking care of her even when she deserved to learn her lesson the hard way, and I was just fed up with her attitude!

My friend, who was in the other room, heard me shouting and high tailed it out of there! Oops.
Well, now she knows I'm human, and yell at my kids sometimes. (I know it might be hard to believe, especially for all you perfect parents out there, but I can be pretty scary when I am a raging lunatic mom)

I tried to regain my composure and talk reasonably with my daughter, but everything that came out of her mouth just agitated me further! Finally, Moshe came out and sent her to her room.

Later, much later, he went in to talk with her.

Then she came out to talk with me.

We were both much calmer and had a really productive conversation. Every time my daughter slipped into "teenage mode," I miraculously managed to maintain my poise and refocus her attention on the main issues at hand.

When we finished, she went off to do the things she had to do. I promised her that when she was done, we could spend a few moments together.

When she came back, she was affectionate, but still a little irritating. Eventually, I got her to smile and even to laugh.

"Why won't you drive me in the morning?" She asked, for the umpteenth time, looking up at me with her puppy eyes.

"Because I do not love you enough," I answered, exasperated.

"Can you love me more," she implored.

"I already do," I answered, kissing her on her forehead.

Y: "A hundred times?"

Me: "A million times"

Y: "A googol?"

Me: "A googol of googols."

Y: "Enough to take me in the morning?"

Me: "No."

Y: "Can you love me more?"

Me: "Yes."

Y: "A lot more?"

Me: "To the moon and back!"

Y: "Enough to take me in the morning?"

Me: "No."


Suddenly Moshe's voice interrupted us: "Doesn't she have to get up in the morning?"

I looked at Y with "that look" that said "you are getting me in trouble with your Abba again!" Then I mouthed to her "get into bed" and called back to him: "she's already in bed."

"No I'm not" she called back, laughing, as she ran to her room.

Then she stopped, turned to me and asked “Will you sing to me?”

I was so tired. But, how could I say "no?" We had had two very bad fights in as many days, and now she was asking me to sing to her, something I have not done for a very long time.

I got up and accompanied her to her room. Then she crawled under the covers and stuck her hand out, for me to hold.

As I sang to her, she closed her eyes and smiled that peaceful, beautiful smiling of sleeping children.

When I finished, we hugged each other.

"I love you," she said quietly.

"I love you so much," I whispered back.

Then, just before I walked out the door, I paused. "No," I answered the unasked question one final time.

"What...?" she started to ask.... then.... "Oh....."

She giggled.

"I love you, mommy."

"I love you too sweetheart."





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

With love and optimism,
RivkA

Less Pain

For the first time in six month, I am taking less pain killers than I was a week ago.

I find myself going for hours at a time with no medication. That hasn't happened for the longest time.

As of a week ago, I was taking two Optalgins and two Algolysins every four hours, and I could barely wait for the next dose. I knew that it would not be much longer before I had to move up to the next level in the world of pain killers (from Algolysin to Percocet).

When I need to take pain killers, I still need two Optalgins and one Algolysin, but even that is less than I was taking a week ago.

I have had only two doses of Taxol, so this is certainly not a definitive indication that the chemo is working.

Still, it is encouraging.



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

With love and optimism,
RivkA

Chemo Day -- It Could Always Be Worse!

Can now RECEIVE, but still cannot SEND, email. AAARRRGGGGHHH!!!!
(I'm having a Charlie Brown moment!!)

Quick update of today (will have to catch up another time):

Chemo in the morning -- I cleverly thought to have a friend who can work on her laptop join me and work for most of the time, while I slept. Since there were MANY unforeseen problems today, she ended up being a TREMENDOUS help!! And she still managed to get a ton of work done. (yay!)

TROUBLE with my PORT -- the IV drip wouldn't work. they tried switching the port tubing (i.e. sticking me with another needle), switching the IV tubing, sending my to x-ray the port, etc. All this, AFTER I already received over half the dose of Phenergan and was woozy and sleepy. They kept waking me up!

Eventually, they decided to inject urokinase (blood thinner) into the port. They wanted to do that and then send me home, to come back tomorrow! No way!! I was already doped up, and had completely lost the day anyway. Not to mention that my friend (who it turns out is really an angel!) was available to help me ALL DAY today. Whereas it would be a nightmare to do it tomorrow!!

In my stupor, I tried to convey all this forcefully enough to enlist their assistance -- I did not want to be too forceful (unlikely, since I kept falling asleep in the middle of our conversations).

I guess I succeeded, because some time after they gave me the urokinase, they moved my bed to the regular oncology ward, where the nurses there gave me the preparations and chemo (Taxol). The nurses put me in one of the isolation rooms, so I was there by myself (with my friend).

I did not care where I was as long as I could sleep!!

I woke up around 6:30 pm. My friend managed to find me some dinner (not bad for hospital food!). I was supposed to be at my kids' school for Parent-Teacher night, but I had at least another 10-15 minutes left. *sigh*

I finished chemo at 7:00 pm and my friend drove me straight to my kids' elementary school!! (I kid you not!)

We talked to ALL the teachers who were there, and also the guidance counselor (yoetzet) and the principal. Overall, the kids are doing well!! (more on that another time, b'li neder (no promises))

Then we left the Rova (the Jewish Quarter of the Old City, where my kids learn), at around 10:30 pm, and stopped off at my sister's to pick something up.

Then Moshe dropped me off at home, and he went to work to finish putting my medical files in digital format.

I wanted to go straight to sleep, but MY KIDS WERE STILL AWAKE!! It was ELEVEN O'CLOCK AT NIGHT!!

I wanted to just sing to them, but they were so anxious about what their teachers said.... So I went over what everyone said (good for my kids, not-so-good for me, but still the "right" decision). Then, AFTER MIDNIGHT, I sang everyone to sleep. (Well, not to sleep, but relaxed enough that they all went to sleep without asking to read!!)

Then I had a quick talk with Y, who was having a rough day and just needed someone to listen.

Then, I decided to "just quickly look at my email," now that it was working again... BIG MISTAKE!!

An hour and a half later, exhausted, and out of my mind, I noticed that EVERY SINGLE EMAIL BOUNCED BACK!!!

I give up!!! The emails will wait for tomorrow!

Moshe is still at work trying to make my medical files accessible on the web!!

Did I mention that I have to get up early tomorrow morning????



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

With love and optimism,
RivkA

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

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