Cancer on the Brain

My oncologist sat there so calmly while I focused on breathing, and not falling apart.

All these years, I have said to myself (and to others), "thank God, it's not in my brain!"

Now, here I sat, in my own worst nightmare.

"We can treat this," my doctor said, reassuringly.

Only, I did not find any of his words reassuring.

"It's in my brain, my brain, my brain," I repeated, softly.

"It was in your liver, your liver, your liver," responded my oncologist, leaning forward and looking me directly in my eyes.

I met his gaze and challenged him, "but the brain is worse!"

"Wrong!" my oncologist corrected me. "Disease in your liver can run you over like a railroad train."

Whoa, talk about cognitive dissonance.

Mets in the liver is a serious threat. Yet, since the mets in my liver responded to treatment (there are no more tumors visible in my liver), and I never experienced any symptoms, I do not feel scared by it.

Now, even though I do not have any symptoms, and we expect the tumors to respond to treatment, I still feel very scared.

It is not completely rational.

Mets in the brain seems so much scarier.



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

With love and optimism,
RivkA

And then there were six....

Sometimes, I feel like I have been dealing with cancer for years.

It is hard to imagine that I am only two years into the game.

In the beginning, I was desperate to find other women who have been living with cancer for ten years or more. I needed to speak with real live women who were beating the odds.

They exist. And they are amazing.

One of the women in my support group has had cancer for 19 years. She still works every day. She has married off all four of her children, all of whom were little kids when she was first diagnosed. (One of her sons, and his family, lives down the block from me.)

All of the women in our support group are still very active. We are all busy women who also happen to have cancer. Cancer is not what defines us, even though it is our common denomenator. There is vitality in our group of vibrant women.

Our group has created a "safe space," filled with faith, hope and optimism, despite the fact that we talk about our inermost feelings and our deepest fears.

Currently, we are in the middle of a 4-5 part series with a psycho-oncologist whose specialty is parenting. Many of us felt the need for several sessions focussed on issues of parenting.

I constantly wonder about my childrens' behavior -- how much of their behavior is "regular adolescence" and how much is affected by cancer?

This past Sunday, we gathered early, to talk about the recent passing of Pia, one of the members of our original group. When I arrived, I learned that another woman from the group, B, just died this past week (She only came to our support group once or twice, but I met her in the hospital on several occasions, and other women knew her from previous groups/events).

Within the first few minutes of our discussion, I learned that a fourth women from our group, Tz, had died almost two months ago. I did not know.

I was caught off guard and did not know how to process the information.

When I commented on the fact that four women from our group had died already, I was corrected. ("What? You did not know?" ) Apparently, Y died a while ago too.

I did not know.

How could I know? I did not ask and nobody told me.

I wish somebody would have told me. I did not like finding out this way.

All of a sudden, I was faced with several deaths.

I know that in many ways my situation is different. That does not change the facts.

In less than two years, five women from our support group are no longer with us.

Six of us are still here.

Five of us still meet regularly, at our current support group. (the sixth lives in Dimona, over 3 hours away)

Four of us meet almost weekly, at Sha'are Zedek, where we get chemo on the same day (the fifth lives in B'nei Brak, as does another women who has been part of our group from the beginning of this year).

Three of us have the same oncologist.

Our lives are all intertwined.

These women form such an integral part of my life. I see them, and speak with them, more regularly than almost anyone else. We share intimite details of our lives. We seek advice, comfort, and support from each other.

I do not want to consider the possibility that we will not all be here in another two years.

This week, three more women joined our support group about parenting.

Once again, we are a group of ten.

I cannot help but wonder who will still be here two years from now.



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

With love and optimism,
RivkA

Someone Else's Mother

During chemo day today, one of the nurses asked me how my daughter (the eldest) reacted.

"To what?" I asked, confused.

The nurse came over and quietly let me know that the mother of one of the girls in my daughter's shichva (grade) passed away from cancer during Lag BaOmer. The girl is from the other class, along with the nurse's daughter.

Hmmmm, I wonder if my daughter's need to talk last night had anything to do with this.

My daughter did not mention anything.

I consulted the social worker, who suggested I talk with my daughter's teacher and gather more information before raising the subject with my daughter.

Before I could find anything else out, my daughter called me about something mundane and mentioned, by the way, that the mother of one of the kids in the other class died of cancer, but she can't talk about it now, she has to go...

Hello???

I told her that we might not be home when she gets home tonight because we are going to Nichum Aveilim (comfort a mourner) -- our neighbor's mother also passed away this week.

"Wow. Everyone's dying," she commented.

"No, not everyone;" I corrected her, "and our neighbor's mother is older, not like the mother of the girl from your class."

I really wanted to hear more, but she really needed to go. I was worried that I would not be able to talk with her about this at all.

Tomorrow morning she is going away for three days for Shabbat Garin -- a regional Shabbaton (retreat) for all the kids her age in her youth group.

So, I was relieved to find my daughter still awake, and busy as a bee, when we returned home.

We started to talk about the girl from her shichva.

Meanwhile, Moshe wanted to heat up some soup.

"Where is the cover to the pot?" he asked me.

As I began to answer him, my daughter started walking away. It was late, and she still needed to pack for the Shabbat Garin.

I stopped answering Moshe and called for her to come back.

We started talking again, and Moshe again asked me where to find the cover to the pot.

Frustrated, my eldest said she really did not have time to wait because she had to go pack, and walked out of the room.

I couldn't believe it!

Now all three of us were frustrated!

My eldest needed to pack.
I needed to talk with her.
And Moshe needed the cover to the pot.

I glared at Moshe, told him to cook it without a cover, and followed my daughter, hoping I could at least talk with her while she was packing.

It was not the greatest of circumstances, but it was the best I was going to get at that point.

I learned that they talked in school about what happens during shiv'a (the 7 day mourning period), and about who goes to Nichum Aveilim. Most of the girls from the other class are going, and some girls from my daughter's class, who are close with the girl who lost her mother, are going. My daughter is not going.

At first, I thought she should go, even if she is not close with the girl, but I did not say anything. I am glad I waited.

As we were talking, I realized that, given my situation, it was probably better for my daughter not to go.

It is healthier for her to maintain her distance. She does not need to vicariously experience the pain of losing a mother.

All the time we are talking, my daughter is deliberating about what clothes to bring, pulling clothes out of her closet, making lists, etc.

At one point, my eldest expressed her exasperation. "I do not want to talk about this anymore when I have more important things to worry about!"

"Like what clothes to pack!" I finished her sentence.

"YES!!" she shouted.

And, with that, the discussion was over... almost.

I explained that it was important for me to talk with her about this because I wanted to make sure that she was not worried or concerned. She assured me that she was not. Why?

"You are not going to die," she explained, succinctly.

"We are all going to die," I corrected her.

"Yes, but you are not going to die from cancer," She answered.

And, with that, the discussion really was over.

I hope she is right.



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

With love and optimism,
RivkA

Medical Update -- fingernails and chest pain

OK, so I want to clarify something here: my concern over blue nails is not "cosmetic."

I have to ice my fingernails and toenails to keep them healthy. If they turn colors, that is NOT a good sign. If they are not well, they are in danger of infection or falling out or both. Not a pretty sight, and not something that a little nailpolish can fix.

Today, I met with my oncologist and asked him if the cold pack gloves and slippers were really necessary. He said they were mandatory (for all the reasons mentioned above).

They are not fun, but now that I know what to expect, I can deal with it a bit better.

That said, they are downright unpleasant.

On a happier note, I did not experience any chest pain from the Taxotere today. The drip was fairly slow, so that might have had something to do with it, but I do not know. In any case, I am cautiously optimistic that I will not experience any more pressure.

Chemo day was long today (9:40 am - 4:20 pm), but much better than last time!



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

With love and optimism,
RivkA

Please Daven (pray) for My Friend

We met in the chemo ward, but it turns out we grew up almost next door to each other. She was a bit older, so our paths did not cross back then. However, our brothers went to school together and our moms knew each other.

Over the last year and a half, we have become good friends.

My friend has a rare form of bone cancer that has metastasized. We often talk about the challenges of living with cancer and of raising children under these circumstances.

Recently, she travelled to the US for medical consultaions at Sloan Kettering.

On Wednesday, May 6, she is undergoing surgery in the US to remove tumors from her liver.

During her last surgery, for reasons that none of the doctors understand, her organs began to fail and her life was in danger. So, there is an added level of concern regarding her upcoming surgery.

She is a pretty amazing person. She continues to work part time in her profession as an occupational therapist. She is an attentive mom to five (or six?) kids and already has one grandchild!

Please daven (pray) for Taube Yehudit bat Tema Gussy.



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

Baruch Dayan Emet

We first met in an art class (paper mache) for people who have or had cancer. There were less than 10 women in the class. It took a while to figure out who was finished with their treatment, who was still in treatment, and who, like me, would always be in treatment.

P was striking. Tall, and thin, with short light hair. She was often engrossed in her work. She did not chit-chat like the other women.

I discovered that P, like me, had metastatic cancer. She had a different type of cancer and, truthfully, it was a miracle that she was still alive. Her original prognosis was grim, 6 months. I met her several years later.

A nurse by profession, P did not live in an illusion about her fate. But she continued to live life to the fullest. When I met her, she was planning her daughter's wedding.

When my support group started, almost two years ago, she was surprised to see me. I realized she had not comprehended that I also had mets. She was friendlier after that.

Through our support group, I got to know her better. She was intelligent and perceptive. I especially appreciated her perspective on parenting.

P did not join this year's support group. I called her to find out what was going on. She really appreciated the call. She had a conflict with her chemo schedule and it was too difficult for her to come.

Every few months, I called her to see how she was doing. Each time, she seemed happy to hear from me. We would chat for a while and she would update me about her family and her health. She was doing well.

I learned that one of the nurses in the hospital was a close friend of hers. So, periodically, I would ask the nurse about her as well.

It was a while since I last called. So, today I decided to call.

As soon as I asked to speak with her, I suspected that something was wrong. Her daughter handed the phone to someone, and I thought it was P. It was her sister. She was sorry to tell me that they were sitting Shiv'a.

P passed away on Sunday.

Today and Saturday night are the last days of shiv'a (the 7 day mourning period). I would have liked to go, but I won't be able to. Instead, I feel at a loss. I have to focus on getting ready for Shabbat.

I am so sad. So, so sad. But, if I think about P too much, I won't be able to attend to the immediate needs of my family as we all work to prepare for Shabbat.

I want to talk with someone, but I don't know who. The friend I would have called first is in the US. I tried calling one of the women from our group, but she was not home. I tried calling one of the women from Beit Natan; she was not home either.

So, I went back to work. I still have to finish cooking. There is only an hour left.



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 -- the traditional kind

First, let me be clear, I only clean for Pesach. I do not do “spring cleaning.”

Second, I only clean the bare minimum. I don't worry about the dust or the clutter. I just worry about getting rid of chametz.

In the past, I spent a lot of time and energy getting rid of chametz. We used to completely rid our home of all things chametzdik (of, or having to do with, chametz).

Moshe does not believe in selling chametz and I do not believe in wasting food.

So, starting around Tu B'Shvat, I stopped stocking up and started working our way through our stores of food and condiments.

I also started contacting food companies to verify the sources of various ingredients. I needed to know, was the vinegar made from wheat or barley, or was it synthetic or make from something else? What about dextrose and dextrin? Were they made from corn, wheat or barley? I could keep the corn derivatives, since I can own kitniyot (even if I can't eat them), but wheat or barley derivatives had to be finished, given away, or thrown out.

Many companies assumed I was asking about gluten, so I had to explain that this was not a health question, but a religious question. It was an educational experience!! And it took time!

I used to check EVERYTHING!

Not anymore.

Ever since I started dealing with the cancer thing, I just can't do it. For a while, I still made the effort to contact companies. Not this year. I spent too much time feeling sick and tired.

Much to Moshe's chagrin, I have taken to selling our chametz.

I sort through what I can. We finish what can be finished. And then I just sell the rest.

So, in theory, I should really have a fairly easy time preparing for Pesach. I just basically need to clean and kasher my kitchen. Oh, yeah, and our extra refrigerator and freezer.

This year, we might not be home at all during Pesach. So, I am not even going to kasher my oven.

We are going to Moshe’s parents for Seder, to his sister’s for Shabbat Chol HaMo’ed, and to our good friends’ for Sh’vi’i L’Fesach (the seventh day of Pesach, with is also a Yom Tov).

But cleaning always takes more time than I expect!

Despite the fact that both girls helped out a lot, we did not finish in two days. (my son is off on three day tiyul (hike), so he got a "free pass" this year)

Sunday, we (read: my girls) cleaned the extra fridge and freezer.

Monday, all I wanted was to clean our main fridge and have everything put away. We did not finish.

Tuesday, I have chemo. I started to panic.

As I sat with my girls and discussed what they would need to do, my eldest jumped in and said "we can finish the refrigerator; we already know what to do."

There is still plenty of work that I have to do. I have to put everything away (the girls will help with that), and I would like to clean our stove, and kasher our grill (so we can take it with us and have a bar-b-que if we camp out).

We are still debating where to be, and what to do, during the 2-3 days of chol hamo'ed.

The kids really want to camp out. They also want to do some hiking and go to the beach.

If we go camping, I'll camp with the kids and Moshe will find somewhere more comfortable to sleep. I wish he liked camping, but he just does not.

I LOVE camping, but my body is not what it used to be. With cancer throughout my bones, I am a bit more sensitive about where I sleep.

I hope I am up for the challenge!!



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

Why Is That Funny?

On our way home tonight, tired and giddy, my kids and I were laughing about the whole cancer thing. (I know it sounds strange but, trust me, it was funny)

"What is a support group?" asked A.

Y jumped in and answered that my support group is "for women with cancer."

"Not just any old cancer," I pointed out.

"OK, women with breast cancer," Y corrected herself.

"Not necessarily breast cancer," I corrected her this time, "women with metastasis."

"What's metastasis?" A asked, still confused.

MD jumped in "cancer that is not going away."

It might sound like a heavy conversation, but it was really quite lighthearted.

I mentioned that, earlier in the day, my sister mercilessly referred to my group as "poor, sick people who sit around talking about cancer." Y, MD and I burst out laughing.

"Why is that funny?" A asked, even more confused.

"It's not," I answered, after a brief pause.... "which is why it is so funny!"

And we burst out laughing some more.



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

With love and optimism,
RivkA

Small Joys, Small Frustrations

Last Thursday, for the first time in months, the nurse was able to draw blood from my port! I did not do anything different. I did not even remember to drink anything beforehand. It was so great not to be poked another time!

The previous Thursday was more typical. When the nurse could not draw blood, she sent me with the vial to get blood drawn from my arm. I asked why there was only one vial, as all the other times I had two. She insisted that was all that was written in my chart. What did I know? I trusted her judgement.

At least the doctor who is good at drawing blood was back. Just as he withdrew the needle from my one good vein, the woman who overseas the study I am in asked "where is the other vial?"! The nurse was wrong!! I had to get poked again, this time in my hand. It hurt (not much, but who wants any pain?). I had a bruise on the back of my hand for a week!

The first time I came in for chemo, I was introduced to R, my friend who works at Tel Shilo. She told me that I would get so used to being poked by needles that, eventually, I would not even notice. I did not believe her, having developed a life-long aversion to them! In the end, she was right. It does not really phase me any more.

Still, I do not really want to get stuck any more than absolutely necessarily. I was really annoyed, because I suspected that something was missing and had asked the nurse. I was frustrated by her error, and by my having been intimidated to question her further. It will not happen again.

At least not about this issue....



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

With love and optimism,
RivkA

Beit Natan Winter Retreat 2009

I came home from the retreat physically and emotionally exhausted!

I was away for almost three full days and there was so much I wanted to do when I got home. Instead, I went straight to bed! I spent a few minutes with my daughter, then with my son. I fell asleep in the middle of my son's entertaining description of his drama class (he and a few of his friends made a comic skit was about the yetzer hotov and the yetzer harah [our good and evil inclinations]). His description was very amusing, but I could not keep my eyes open!!

I had a wonderful time at the retreat. Many women were there last year as well (I even remembered several of them!).

It felt like coming home.

Last year, I had to be convinced to attend. This year, I could not wait!

It was so wonderful to be in the company of such a special group of women. And it was an emotional relief to be able to talk completely freely of all things related to cancer.

Though I was still a bit reserved about the fact that I have metastasis, it was helpful to recognize so many faces from my support groups and to know that I was not the only one. By the end of the retreat, I had met several other women who are also on the long-term plan. One woman with mets was only 34!! (she was 29 when she was first dianosed with cancer, and received her second diagnosis only a month after she finished treatment)

The time just flew by!

It seemed as if we just arrived and already it was time to pack up and leave.

I look forward to next year!



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

Chemo Day -- my last Tuesday

It was difficult to say goodbye to the many friends who only come to chemo on Tuesdays.

When I arrive, so many friends great me with smiles and hugs. They know me and I know them. I will miss seeing them every week.

Transitions are difficult for me.

That is one of the things I learned about myself from my son. We both feel comfortable with the familiar.

In time, I am certain that I will build similar relationships on Thursdays.

Still, those relationships take time and energy to build and foster.

I know that I have helped to contribute to a more positive environment in the chemo ward.

Over this past year and a half, so many people (patients, patients' families and friends, nurses, etc) have told me how much my smile helps to brighten their day, and how much they miss it when I am not there.

Part of me feels that maybe God wants me to spread joy and happiness on Thursdays as well.

If so, that certainly gives a higher meaning to changing the days.

Feeling that there is a purpose also mitigates some of the stress and resentment. I do not want to change days. But, if there is something good that will come from it, then that makes it easier to accept.



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

With love and optimism,
RivkA

Chemo Day is moving to Thursday

I hope this works out.

For now, I am moving all my swimming classes to Monday. I think everyone can do it.

The big question is whether or not my son can do it.

He has sayarut (scouts) on Mondays. The madricha (counselor) cannot switch days, but she did agree to meet earlier. The logistics are tight, but he should be able to get to swimming on time for lessons.

It will be a bit stressful, until I am certain that everything is working out.

Meanwhile, I made the appointments....

So, want to make a date?



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

With love and optimism,
RivkA

Not Normal

I stood on my feet for almost three hours today.

I had a table selling Tupperware at the Horev Hanukah Fair.

Had I been "normal," I would have stood the entire time. But my back hurt. So I sat down.

It might not have been so great for business, but a gal's gotta do what a gal's gotta do.

Still, mostly I stood.

I pretended to be normal, like all the other vendors.

I smiled all the time, and displayed my wares to anyone who stopped long enough to look and listen.

I chatted with friends, and caught up with acquaintances.

I greeted several children who were/are my swimming students.

I gently asked the many curious children with their cotton candy and their sufganiot (jelly donuts) to "please be carefull" not to touch things with their sticky fingers.

The atmosphere are the fair was really nice. I met up with lots of friends.

The guy at the table next to me was very friendly, and had a great smile. He looked so familiar, but I did not recognize his name. I discovered that he is the brother of a friend of mine. No wonder he looked so familiar.... they have the same smile!

When the fair finally over, I packed up my things....slowly....

Somehow, I always seem to be slower at packing up than everyone else.

My friend's brother offered his assistance. There was nothing he could do to help me pack, but I jumped at the opportunity to recruit his help in bringing my things back to my car.

While he was waiting for me to finish packing my last bits, I joked about how slow I am.

"I have a good excuse," I blurted, without thinking.... "chemotherapy."

Blank stare.

"Why?" He blurts back, not thinking any more than I did.

Duh.

"Because I have cancer."

Even as we were having this surrealistic conversation, I wondered why I did it. Why spoil the illusion that everything is normal?

Working these fairs is fun, but it is hard work, even when you are normal.

I am not normal.

At the end of the day, I was REALLY tired, and more than a little proud that I had managed to pull it off.

I guess I wanted the recognition.

I wanted someone to say, "Wow, I never would have guessed!"

I wanted someone to know that it was hard for me, and I did it anyway.

I am glad I did it.

I had fun.

I felt.... almost.... normal.



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

With love and optimism,
RivkA