Chemo Day -- Herception, Doxil, Blood & More

I knew today would be a bit crazy, I just did not realized how crazy it would get.

The day started out in a fairly benign way.  There was some crisis at the hospital, earlier this morning, so my meeting with the oncologist began an hour late.  But the meeting itself was fairly straightforward. We addressed my long list of questions, scheduled a bunch of tests, and had a physical exam.

During the meeting, one of the nurses came in and hooked me up to the Herceptin.  And so the day began....

On my way to relax in the day room, Moshe approached me in a panic.

"They can't find it," he told me, with a worried look on his face.

The insurance company, which provides the actual Doxil for me, had called yesterday to inform Moshe that the Doxil was at the hospital since Tuesday. 

Only, it turns out that they, in fact, had not delivered the Doxil on Tuesday, nor on Wedneday, nor today.

God bless my husband, he stressed out about the problem, but he fixed it all on his own, which was not quick or simple.  I did not have to worry about anything, because he took care of me.

I do not tell him often enough how much I value and appreciate the way he looks after me.  On the flip side, I am quick to comment when he falls short, which is just not a good attribute on my part.  I am working on changing this, but the change is slow.

Once everything fell into place, Moshe hurried off to work, much later than he expected.

To my great surprise and pleasure, LS, who had to do something that morning at the hospital, came to visit me and ended up spending the day with me.  The day ended up being much longer than I expected, and she helped me with all sorts of little details and necessary errands.  Moreover, she provided wonderful company, and made the time pass much more pleasantly.

Moshe had fixed the glitch so well, that I was able to start the Doxil as soon as I finished receiving the Herceptin.  In theory, I could have gotten out of the hospital at a decent hour. In practice, there is always someone who throws a wrench into the works... One of the nurses told me that my counts were low again and I would need to come in next week to receive another portion of blood.

I really did not want to come in next week.  I asked to get the blood today, but the nurse insisted there would not be enough time today.

Never someone to take "no" for an answer without trying to find a way around it, I asked (read: begged) one of the other nurses to help see if I could get the blood today.

As is, next week I have an MRI of my head on Tuesday, an MRI of my right hip on Wednesday (if I get approval from my health fund in time), and my bone drug on Thursday.  Three days at the hospital is enough for one week!

Also, though the promise that the blood will help with my energy level did not pan out the last time, I really hoped that this time the blood would help restore some of my energy,

With the help of this other nurse, and of my friend, LS, who ran around the hospital helping the process move along, we managed to get the blood in time.

The infusion finally finished around 4:15.

I walked out of the hospital at 4:30.

I had accomplished quite a bit. In addition to the chemo and the socializing, I mended two pairs of pants for Moshe, and a handbag for me.

I also drank two cups of pea soup, a cup and a half of iced coffee, at least a liter of water, downed several Percocets, and found a friend to pick me up and take me home.

Not bad, for a 7 ½ hour day at the hospital!

I was ready for a nap!

However, after being out all day, my youngest, who had been home, on her own, for several hours, needed some attention.  So, I kept her company while she ate.  To her chagrin, while I sat with her, I also helped eat most of her mango.... (she offered to share with me, but had not intended to share quite that much.)

After lunch, we sat on the couch and, in response to her lunchtime request, I told her the story of how Moshe and I got married. She knew most of the story, but wanted to hear it again.  I think she appreciated the story even more, this time around.

Afterwards, I headed towards my room, and my bed.  Somehow, I got distracted along the way, and got sidetracked sorting through school books.

Eventually, I could not stand on my feet any longer.  I headed off to bed.

I am beat!



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

With love and optimism,
RivkA

Crazy Cancer Patient

Yes, that would be me.

I could barely shuffle down the hall this morning; I was in that much pain.

I arrived at the hospital around 9:00 am.  The entire nursing staff took care of me so that I would have time to receive both the Herceptin and the Doxil.  They did an amazing job, but it was close to 4:30 pm, by the time I got out of there.

I did manage to schedule a massage, and that helped me immensely.  I felt much better afterwards, and I moved easier as well.

I drove straight home, packed up some good food, packed my daughters into the car, and drove to the train station. 

Then we took the train to Tel Aviv and saw Carmen in Park HaYarkon.

I got home around 1:30 in the morning!


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

With love and optimism,
RivkA

A Day In The Life....

I wake up in the morning, and remember: today is chemo-day.... ugh... maybe I can grab a few more minutes of sleep....

When I have no time left, I get up and put anisthetic ointment on my port.  If I don't, it will hurt when the nurse sticks me with the needle.  Then I get ready quickly and we leave for the hospital, anxious about getting there on time.  (We are always running "late.")

We usually have to search for parking.  By the time we get there, even the handicapped spaces are often all full.  It is too difficult for us to get out of the house earlier.

We arrive at the oncology day ward, and wait for our turn to check in.  The waiting time varies dramatically, from zero to twenty minutes.  It all depends on how many peope are in front of you. 

You never know in advance what will be.

Once I am checked in, I go for a blood test.  People like me, wait for their port to be "opened."  Others wait for a heparin lock to be inserted into a vein in their arm or hand.  Here too, we wait. The wait is usually between twenty minutes and an hour, but occasionally it takes longer.  It is not uncommon to wait an hour and a half. Again, you never know in advance.

Once blood is drawn, we wait again, for the results (white/red blood cell count, kidney/liver functions, etc.).  For some, this is a very stressful time, because only once they get the results, will they know if they will receive treatment.  It is very stressful to be sent home with no treatment.

Thank God, my counts are usually good, so waiting is just a necessary inconvenience.

Once the blood work has been processed and confirmed, the nurses order the drugs to be prepared by the pharmacy.  Again, all this involves waiting: waiting for the nurses to check the bloodwork; waiting for the pharmacy to prepare the prescription; etc.  It can take the pharmacy up to several hours to prepare a prescription.  Again, it all depends how much work they have on any given day. 

We never know in advance.

Once the drugs are ready, we wait for them to be brought to the department.  Then, we wait for someone who can administer the drugs to hook us up or give us the shot.  When we receive more than one treatment, or additional preparations, we wait each time one of the IV bags needs to be switched. 

Individual IV treatments can take anytime, from twenty minutes to several hours, depending on the type of treatment and the person receiving the treatment.  (For example, I was sensitive to Herceptin, so it had to be administered slowly, taking 3 to 3 1/2 hours, instead of the "normal" hour and a half.)

When we are finally done with all our treatments, the entrance to the vein (via port or whatever) is washed with saline and heparin, to prevent clotting.  Of course, there is often a wait for that as well. 

Then, the needle is removed, the needle mark is covered with gauze and tape, and we are done.

The waiting is over; we can go.

Overall time: 3-5 hours on a "good" day.

Some chemo days last 5-7 hours.

I never know how long I will have to be there.

I do not plan anything on days that I need to be at the hospital.  I certainly do not need any additional, and unnecessary, pressure. 

Just waiting all that time can cause stress and anxiety.

Not for me.  I fill my time with good company and good conversation (and, if I'm lucky, a massage).

On chemo days, I clear my calendar, and make a date with a friend, for "coffee and chemo." 


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

With love and optimism,
RivkA

Interesting Experience

When my friend (ZW), and later Lena Stern (Yuri Stern's widow), asked me to say a few words at tonight's fundraiser, I agreed, without hesitation.

I did not realize that I would know most of the people in the audience.

I should have known.... I just didn't.

So, when I addressed the audience, it was like talking with friends.

Except, I talked about the things I never talk about.

In order to appreciate what it is that the Yuri Stern Foundation provides for cancer patients, it is necessary to understand what a day at the hospital is like.

So, I painted the picture, with the express hope that none of them should ever have to experience, first hand, a day in the chemo ward.

Afterwards, so many people approached me with comments and compliments.

I realized, I never before spelled out, in detail, what goes on during chemo days.

Tomorrow, b'li neder (no promises), I will post about what a day in the life of a cancer patient is really like.



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

With love and optimism,
RivkA

The BEST mood!

What can I say? Chemo was so much fun today!!

First of all, I started off the day in a GREAT mood.

I went to sleep late and woke up early, yet I was still full of energy! My guess is that I was feeling the after-effects of the laughter workshop!

When I arrived at chemo, I saw RE, who I have not seen for a long time (she's my friend, who runs the hadracha (informal education) center at Tel Shilo). We both changed chemo days and now we do not overlap at all. So it was great to see her and have a chance to catch up!

As we were talking, my oncologist snagged me to come into his office. I got nervous, because we were not scheduled to meet today, but he just wanted to take two minutes to share the results of my MRI. Everything is stable, Baruch HaShem!! (Thank God)

When I went to stake out a chair in the day room, several people greeted me enthusiastically. What a great feeling!! I spent a few minutes chatting with each one, and then went to open my port.

Once again, the nurse drew blood easily. What a bracha! (blessing) For almost a full year, it took almost 15-20 minutes to draw blood from my port -- and that is when the port worked! Almost 50% of the time (maybe more), I had to get blood drawn from a vein because the port only worked "one way" -- you could put stuff in, but you could not get anything out! Something shifted during these last two months and the port has been working as it should!! Chasdei HaShem! (God is good!! -- ok, that is not an exact translation, but you get the idea)

After that, I had a wonderful foot massage to relieve some of the pressure in my feet and legs from swelling caused by the chemo. (Thanks to the Yuri Stern Foundation)

After my massage, I sat for a few minutes with N, another friend from chemo who I have not seen in a long time.

Then today's chemo date arrived! I have not seen my friend HND for a long time! Our schedules just don't match up! But she is about to move up north and we both really wanted a chance to hang out before her move. As always, our conversation covered a broad range of topics and was really interesting!

In the middle of the day, when the ward was starting to empty out, one of the nurses, who is a real character, sat down on one of the chairs for "story hour." Yesterday, a patient gave her a printout of one of those cute anecdotes circulating the internet these days (The Story of the Ceramic Tea Cup and its Maker) and she decided to share it with us, translated into Hebrew, of course.

Just as she began the tale, the couple who comes each week to deliver food from Ezer MiZion arrived.

How can I describe this couple? First, you need to know that the "typical" volunteers for Ezer MiZion are gentle Hareidi (ultra-Orthodox) women in their late fifties, or older, who speak softly and tend to be very demure. Not this couple. They are probably in their forties, but maybe in their early fifties -- I used to be good at estimating ages, but not any more. It does not matter; their age is irrelevant. They are certainly young at heart!

What sets these volunteers apart is the husband, who has a booming personality!! He is tall, wears a large white kippah typical of hippie dati leumi (national religious) types, and his presence just fills the room with joy!! (He makes me look quiet!!) Both the husband and the wife have large, warm smiles, and they take a bit of time to talk and joke with the patients. Just writing about them makes me smile!!

Today, they mentioned that they are going on vacation for a month. They will be spending a week in Orlando. Disneyworld and Universal Studios are my favorite places in the world!!! I could spend a month in those parks and not get tired of the rides!! Not to mention all the REALLY NICE people who work there!!! So, I spent some time with them describing the different parks and rides, and sharing tips for how to maximize their time. It was nice to be able to give back something to these special people who brighten up my day each week. (At least, I hope my suggestions were helpful. We'll find out when they return.)

I admit I am a bit jealous. I REALLY want to go to Orlando with my kids now, while they are still young enough to enjoy vacationing with their parents. (and while my health is still good enough that I can go on ALL the rides!!)

After the couple left, the nurse continued with her "story hour."

The whole thing was just so funny!!

After chemo, on our way out, we met S&AG, who were hanging out in the coffee shop. We hung out with them for a while, catching up. AG is always involved in really cool and unusual projects. S&AG were advisors when I was in NCSY. I was a S "groupie" -- I always attended any session she led. She was, and is, a fantastic educator and role model! I wonder if she knows how much I admired her. (if she reads this post, she will know now!)

When we left the hospital, I was not tired, so I accompanied my friend on an errand and then she came over for a quick cup of coffee.

Not long after she left, my kids came home. They were all excited about having sold almost everything they brought to the shuk kach-ten ("give and take" market) -- the kids bring things to barter and "sell" for special school made money. My kids had a table together and cooperated so that they could each get what they wanted.

I find it fascinating to see what interests my kids from year to year. Sometimes they just get junk that they tire of in a few days, but sometimes they get things they really want. For example, my son got a fun baseball cap that he likes, and that he can use for tiyulim (hikes). This year he lost several hats we had that he liked, so I am pleased that he found a hat that suits him. Hopefully he will keep this one for a while. (I am not holding my breath)

My daughter waited patiently for her turn to share her treasures. She watched as my son slowly took out eat item and showed off his finds. Then she did the same, slowly exhibiting each item, saving her favorites for last.

By the time they were done, so was I. It was a long day.

But both kids still needed more attention. My son was in one of those moods where he was still hungry but would not finish the food he had. And my daughter wanted me to sit with her and fix all the typos in her English project.

I would have been happy to hand over the reins to Moshe, but he went to Shavua HaSefer (The Book Festival) again, for the third time.

I could not even turn to my eldest for help, since she is away for the night. Her school decided to have an overnight tiyul (trip) for the last two days of school.

In the end, I just sent my kids to get ready for bed. My son grumbled the whole time about being hungry but when I went in to talk with him about what happened he was already asleep! My daughter also would have been happy to play around for longer, but it was 8:30 and time for bed!

As soon as the house quieted down, my good mood returned.

I planned to go out tonight to celebrate a friend's birthday. If Moshe were home, I probably would have gone, especially if we would have gone together (read: if he drove). But by the time the kids were in bed and asleep, I realized it was too much! I might have been able to drive there, but I did not want to drive home late at night.

I had a great day, but my energy has finally waned. I am tired. The good kind of tired. The way you feel after a really great day.

Isn't it funny? Today was a chemo day, but it was a really great day.

Fancy that!



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

With love and optimism,
RivkA

Yom Yerushalayim & Getting Older

This is the third year in a row that I did not participate in the rikudgalim (dance/parade of flags). That is it. I am done. Three times is a chazakah.
(off topic: it is SO COOL that I can link to a definition of chazakah on Wikipedia!!!)

Two years ago, the pouring rain helped me to justify still being too tired to participate (even though my last surgery was over half a year earlier).

Last year, I determined to push myself and do it, until I realized there really were other options.

Finally, this year, I did not even consider it. OK, I considered it, but for only a fraction of a minute, so that does not really count.

I am just too tired, my feet are too swollen, and the kids are old enough to be doing their own thing (at least the older kids are).

Like last year, my eldest went with her friends, my son went on a tiyul (hike) with Sayarut (scouts) (after attending the Bat Mitzvah of one of the girls from his class), and that left my youngest, who went to Zam Zam and did not even miss the parade.

I was all set to attend our community davening (praying) -- this year, all the Batei K'nesset (shuls/synagogues) prayed together in one minyan (quorum), in the large, neighborhood schoolyard (down the block from us).

Moshe wanted to attend a film about the battle for the Old City in the War of Independence, followed by a talk given by Natan Gini, one of the children who fought to defent the Old City during the War of Independence.

My daughter's fifth grade class had done a play about his brother, Nissim Gini, the youngest fighter to fall in defense of our country. He was only ten. His big brother, Natan, was all of twelve at the time. Afterwards, the kids all wrote letters to his sister, sharing what the story meant to them.

Though I was inclined to attend the davening and then come home and rest (let's not forget that I had chemo today -- though I only had Herceptin since the doctor is giving my gastrointestinal tract a rest for a week, before he lowers the dosage in an attempt to alleviate, or at least significantly lesson, my stomach troubles).

"Why would you send me the information if you do not want to go?" my husband asked, perplexed.

When my youngest heard that Natan Gini would be speaking, she also wanted to go. That tipped the balance.

Both the film and the presentation were interesting and informative.

On the way back to our car (there was terrible traffic, so we parked pretty far away), I met an older friend, returning from the Old City.

I felt a brief pang of regret that I had not participated, but it did not last long.

I was tired enough.

And ready to go home.....



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

Only Because I Love You (i.e. why I posted instead of going to sleep)..... Medical Update: Taxotere (and Herceptin) -- The Next Chapter

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

--------------------------------------------------------

PART I -- Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room... to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

--------------------------------------------------------

PART II -- Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?”

“I am not sure;” he responded, “I think I want to do an Echo and check your heart.”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!



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

The Day Before Pesach: Chemo, B'dikat Chametz, and Birkat HaChama

Chemo Day: 9:00am-3:00pm

I have no words to thank my friend RG who spent the whole day with me, the day before Pesach!! Special thanks also to her husband, who held down the fort so she could hang with me.

Special thanks also to NT who came to pick me up when I finished... on the day before Pesach!

When I arrived home, I discovered that my two girls did about half of what I asked them to do. Which is not bad, but a little challenging when all I wanted to do was grab an hour or two of sleep.

Did I mention, it is the day before Pesach?

No nap for me!

At 2:21 am, Moshe finished B'dikat Hametz about the same time that I finished my kitchen (read: I finished everything that cannot wait until tomorrow).

My refrigerator is Kosher L'Pesach. My cabinets, ovens, drawers, and machsan (storage room) are closed for Pesach. The floor is done, again. (special thanks to my youngest!) I left a few things out, to be finished by tomorrow. And I am finally ready to go to sleep!

I have two dishwashers going and I remembered to throw my son's clothes in the washing machine, so that is going too.

By 2:30, all the kids were asleep. (thank God!)

How we are going to wake them at 5:0o in the morning is a mystery to me.

Jews around the world are excited about Birkat HaChamah tomorrow. Every 28 years, the sun is aligned exactly the way it was on the day of creation, so we go out at daybreak to say a 10 second bracha (blessing). Yes, it is that short! We say an assortment of Tehillim (Psalms) and other things so it lasts a bit longer. Otherwise you would blink and it would be over.

Moshe got it into his head that it would be totally cool to do this on Har HaBayit (The Temple Mount). I agreed that it would be cool, but thought it was insane to do it on Erev Pesach!

I told him that if he took care of all the organizing, I would go along. Then, it occured to me that my kids might also think it was an insane idea. I was prepared to let Moshe go on his own while I slept a few extra hours and took the kids to the top of our mountain with the rest of our community.

Surprise! The kids are totally into it. Even my son, who is majorly sleep deprived from his tiyul.

So, we are all getting up at 5:00 to go daven (pray) at the Kotel at the crack of dawn, 5:45 am to be exact, (with this group). After davening, there will be a siyum and a seudat mitzvah for those who need it (like Moshe, who is a bachor), and then aliyah laHar at 7:30 am.

Everyone except my youngest needed to go to the mikveh, which was no problem for me, Moshe, or our son (Moshe took him, at midnight, to Yeshivat Itri, in Beit Safafa, which has a men's mikveh that is always open). Taking my daughter was a bit more complicated, but I did it! (I'd love to blog about it, but not today....)

So, my apologies for not providing relevant links to all the references in this blog post.

It is now 3:03am. I am getting up in less than two hours.

Did I mention it is the day before Pesach?!!?



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

Priorities

I just got home from chemo when my mobile phone rang....

"Ima, would you like to spend some time with me?" my daughter asked so sweetly.

Is she kidding?!?

"Of course!" I responded enthusiastically.

"Are you doing anything important?" she asked thoughtfully.

What could be more important than spending time with my daughter?!?

"I'll change my plans! I would love to spend time with you," I assured her.

"Great!" she replied, "'cause there are all these great sales in town...."

My face fell.

"I can't go shopping today," I reticently told my daughter, reminding her, "I had chemo today; I am just too tired..."

I was not surprised when she chose to call a friend and go without me. She met up with MM, a good friend of hers from elementary school. They had a great time together. I was happy for them both.

Later in the evening, when I asked her to help me with something that her brother usually does, she was resentful. I explained that he can't do it this time and that either she will do it or I will have to do it. She continued to complain and express her resentment in a not-so-positive way.

I suggested we could be spending time together. She was not interested. I pointed out that she was spending more time complaining than doing the task! She would not stop. I demanded that she stop. She did not listen. She was angry. She made a nasty comment about my not wanting to spend time with her, earlier in the day. She told me that I chose not to spend time with her!

Now I was angry.

It is one thing for her to tantalize me with the prospect of spending time together. But for her to choose to go to town rather than spending time with me, and then accuse me of not wanting to spend time with her?!? That was outrageous!!

She even had the audacity to imply that I chose not to go. As if I chemotherapy were some fun activity that I chose to do and now I was inexplicably too tired and therefore choosing not to spend time with her.

I could not believe my ears!

Did I choose to have cancer? Did I choose to have chemotherapy? Did I choose to be tired all the time!!

"It doesn't make sense," she complained, "you don't seem tired when you are with other people. You are only tired when you are home!"

Hello?!?

"Yes," I explained, "when I am too tired, I do not go out; I stay home. The only people who see me when I am so tired are the people who live in my home."

"It is not fair," I continued, "It is not fair that I have cancer. It is not fair that I have chemotherapy. It is not fair that I am too tired to go shopping with you."

"But Ima," she said, looking up at me, "you don't really enjoy shopping."

"True," I admitted, "but if I had the choice between spending the morning in chemotherapy or spending the afternoon shopping with you, which do you think I would choose?"



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

With love and optimism,
RivkA

Thank You!! (to everyone who made my 43rd birthday so special!!)

So, I'm still on the birthday theme because, to my surprise and joy, birthday gifts keep popping up!!

I'm still getting letters! (we're not in college anymore; there is no deadline!!)

I also received a box of Godiva dark chocolates!! (I am in heaven!!)

THANK YOU!!!

----------------------------------------------------------------

I really wanted to do something special, at the hospital, to mark my birthday. I have been in treatment for over a year and a half, and I wanted to share my celebration with these people, who have become a part of my life. I am at the hospital every single week -- I see the people there more than I see anyone else!

I knew I should bake a cake.

The problem is, I really hate baking.

I did not manage to bake in time to bring a cake on February 12th. I did not feel too bad about it, since that was only after my "loazi" (secular, Gregorian calendar) birthday. I could bring a cake the following week, after my "Ivri" (Hebrew, Jewish calendar) birthday. After all, the 22nd of Sh'vat is my real birthday.

Of course, by the following chemo day, I still had not baked a cake.

Have I mentioned that I hate baking?

Thursday morning, finding nothing, to grab on the way out, and not wanting to be late to chemo, I determined to bake a cake next year!

I arrived at chemo and plopped my coat and sewing bag on a chair next to LS, who, as usual, arrived earlier than I and saved a seat for me. Then I went about my business, registering, opening my port, getting blood tests (I have so much more to write about this, but not in this post!), meeting my chemo-date (who came, by bus, from Ginot Shomron!! and brought candy!!!), etc.

When I finally went into the day room to sit down and relax, LS surprised me with a birthday cake!! Wow!!

LS made a really large and delicious chocolate cake!! I was able to share with everyone -- doctors, nurses, secretaries, researchers, patients, et al!! I had so much fun bringing around cake and inviting people to share in my birthday celebration!! I just felt great!!

Without knowing it, LS answered my inner wish! Her gift to me enabled me to share my birthday the way that I wanted!

As I entered the day room, after delivering the last of the cake, one of the nurses was ready to hook me up to the IV with my chemo.

I had a big smile on my face as I took my seat and settled in for my next treatment.



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

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

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

"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

Chemo Day -- Chemo Brain

I would like to say that since I only received a half dose of the Fenurgen (super, duper, antihistamine that completely knocks you out!), I was more alert. But.....

That would not be accurate.

Once the drip started, I fought to stay awake and alert.....

I lost.

Again, I am grateful to the two friends (squarepeg613 and NT) who came and took care of me while I slept!

After chemo, I came home, intending to sleep more, but my kids needed me for all sorts of things, for which I did not have the patience!

I really wanted to go to sleep early.

After spending all evening on my kid's stuff, I was just finishing up some last minute details when I ERASED HALF OF MY SON'S CLASS LIST!

I had meant to save the file under a different name but... I FORGOT!!

And you can bet your bottom dollar that I am blaming it on "chemo brain" because I would just feel TOO STUPID to admit that I might have done that even without the chemo!!

Especially because.....

Well.....

Uuhhhh....

Hmmmm.....

OK!

I admit it!

I have made this same STUPID MISTAKE before!!

Now, before you suggest something obvious, like getting the list from someone else, I should explain that I am the one who initiated this class list!

I got tired of receiving class lists consisting solely of kids' names and phone numbers. I mean, how many times can you ask a parent her/his name, before being utterly humiliated by not remembering??

So, I put together a comprehensive, computerized list, consisting of:
Child's First
Child's Family Name
Child's Mother's Name
Child's Father's Name
Child's Home Phone Number
Child's Mother's Mobile Phone Number
Child's Father's Mobile Phone Number
Child's Mother's email
Child's Father's email
Child's birthday

Not to mention the various and sundry additional information, like who is willing to accompany the class on class trips, who is on the class parent's council (va'ad horim), etc.

Because we live in Israel, all this information is BOTH in English and Hebrew!!!

(If I was really good, I would also have it in French. But when I was in high school, my dad convinced me to learn Spanish instead of French because it is more practical. Not in Israel!)

Each year, at the beginning of the school year, I spend significant time and energy updating everyone's information. You might think this would not be so difficult, after all, how many people move each year? But you cannot imagine how many parents keep changing their phone numbers, and mobile phone numbers, and emails, and second emails, and...

You get the picture??

It is so much work, that for several years now, the school distributes MY LIST to the teachers.

Because no one else is crazy enough to put in all that effort!!!

NOW do you understand how stupid I feel??

I had the one and only master copy, with all of this year's corrections and additions!

Only after I had erased the file, did I discover that I had never sent it out to all the parents!

Apparently, I sent out my daughter's class list, but not my son's!

So I spent HOURS, when I should have been fast asleep in my bed, searching through old files and old emails, and doing my best to put together the updated list.... AGAIN!!

And then, when I was finally all done, I emailed the new list, along with a letter requesting that the parents please review their information again and send me, AGAIN, any updates and/or corrections that I might have missed.

So now ALL the parents of the ENTIRE CLASS know just how SCATTERBRAINED I really am!!!

I added two new columns:
Child's Mobile Phone
Child's Email

You think the new requests will fool them into thinking that I am just being REALLY THOROUGH?!?!?!



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

With love and optimism,
RivkA