Tummy Breaks

My stomach is just not happy.

My oncologist advised me to take a break from the drugs for a few days.

I have to be honest, I skipped the drugs this morning because I just could not deal with my upset stomach.

I am so wiped out that I had to cancel swimming lessons today!!  I just could not drag my sorry little *** out of bed!  I also worried that teaching in the hot sun might cause dehydration.  I really do not want to end up in the hospital, and I am losing a lot of fluids....  I am drinking all day long, but I do not know how much I am retaining.

I felt so good yesterday, and today I just feel like a wet dishrag!

I slept for several hours and still feel drained.

At least, I am catching a few extra moments with my girls!  (my son is on tiyul with sayarut)

My stomach feels so awful! (I have not even mentioned my cracked hands and mouth sores!)

I hate this!!


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

With love and optimism,
RivkA

Counting My Blessings (reviewing this past week)

******  warning: long post  ******

So many good things have happened this past week.  I have been too busy to sit down and write!

The day of my PET CT, a good friend, BW, who I do not get to see that often, came to spend the day with me. The intake nurse was a real character; she explained everything in great detail and added a lot of humor to the day. My friend brought lots of great games for us to play, but we did not get a chance to play any of them. We were too busy talking... and sewing. Together we sewed up two major items of clothing for my daughters. After I finished at the hospital, my friend accompanied me (i.e. chauffeured me around town) on a myriad of errands. It was so great to accomplish so much in one day!

Oh yeah, did I mention that when she arrived, she brought three containers of food for my family! She stuck them in the fridge as a matter of course. (get it? as a matter of course??  -- good thing I amuse myself!)

I was tired from all the running around and I knew I had a big day the next day.  Thursday, my youngest daughter's school would be celebrating Yom Yerushalayim, including the "mayatzim" (madrichei yerushalayim tzeirim -- your Jerusalem tour guides) project.  My daughter, along with a team of her 6th grade classmates, would be guiding us on a three hour tour of Ir David (The City of David).  Then, following a communal meal (falafel), we would watch performances of all the younger grades.  Even before I had cancer, this event would leave me both energized (it's such a great program!) and exhausted (it is so tiring!!)!

I planned to rest all Wednesday night and Thursday morning, so I would have enough stamina to get through the big day.

Wednesday night, I had difficulty falling asleep.  My stomach had been bothering since the morning, and it was still churning.  For the first time since I began treatment, I had non-stop diarrhea.  All day, I took pills (Imodium) to stop the diarrhea.  They did not work.  I passed the 6 pill mark, when I was supposed to call my doctor (he was out of the country)… and then the 8 pill mark, when I was supposed to go to the hospital.  I never want to go to the hospital in the middle of the night; but that night would have totally messed me up for the next day!  I needed to sleep.

I was not dehydrated. I had been diligently drinking all day. I even drank a milkshake, to get in some calories and free radicals (salts and sugars). I felt fine. My stomach just would not cooperate.

At around midnight, I called my neighbor, who is also an oncologist (I actually have two neighbors/friends who are top-notch oncologists).  I knew if I called the "on-call," I would be instructed to go straight to the hospital.  I really felt that was unnecessary, but I did not want to be irresponsible.  So I consulted with my neighbor/friend/local oncologist, who I hoped would give me an answer that was not "by the book."  He confirmed that I could stay home and, if need be, I could go to the hospital in the morning, get an IV, and rest there (an option far better than going in the middle of the night!).  Neither option turned out to be necessary.  I had one more episode, after which I was finally able to fall asleep. 

It was not until the next day, when I was feeling a lot better, that I learned that my friend's intention was that I would go straight to the hospital if I had another episode. Thankfully, all's well that ends well.  I was fine the next day and able to rest in my own home, and gather strength for that afternoon's event. 

However, my restless stomach from the day before made me nervous.  I knew there would be no bathrooms once we started the tour, so I popped two pills, "just to be safe," as we left the house.  I am happy to report that I had no problems that day.  Thank God!!

That afternoon, we arrived right on time!  As soon as we got there, I could feel the excitement in the air.  The sixth graders were all in their mayatzim shirts, with voice amplifiers, guiding and directing the parents.

My daughter did such a great job leading our tour group!!  Who would have imagined that just a few years ago, this girl barely spoke above a whisper?  Here she was, full of confidence, reciting her script loudly and clearly.  It was definitely one of those proud parenting moments.

I was impressed by her entire team.  Not just by their excellent presentations, but by the way they worked together, in harmony, making sure everyone had what they needed, stood where they were supposed to, and did not forget what to say.  They did a fantastic job!

My son was in his element as well.  He and another boy from his class had spent several days making sure that their classmates would attend.  They succeeded in gathering almost all the kids from their class and they had a grand old time together.  My son almost blew us off to hang out with his friends, but my eldest convinced him to stay with our group.  I was glad he chose to stay with us.  I enjoy his company (and his help carrying my bag!).

Before the performances, the parents' committee thank the teacher who teaches the kids about Jerusalem from the time they begin school, culminating in this final project.  I was honored to present her with flowers and a class shirt.  It felt fitting to end our tenure at the school this way.

This year is the last year that I will have a child in this school. This was the last time I would attend the Yom Yerushalayim (Jerusalem Day) celebrations. Next year, all my children would go on their own, with their classmates. They would not need me for this anymore. I looked around me, trying to soak it all in.

The shows ended and all the bogrim (graduates) were invited to join the current students on stage, for the "school song."  There they were, all three of my "babies," on stage, embraced by friends and community. My youngest daughter had a huge smile on her face; she knew her class did a great job and the hardest part of 6th grade was over.  My son, surrounded by all his old friends, also had a huge smile on his face as he waved an Israeli flag high over the heads of his classmates.  And my eldest, who also reunited with her classmates, was so free and childlike, dancing with her friends and laughing.  They were home.

The evening ended relatively early.  As the energy slowly dissipated, we made our way home and into bed.

The next day, our youngest two slept in, our eldest went to school, Moshe went to this course he is taking at Ir David, and I went to our friends' daughter's Bat Mitzvah celebration at Nalaga'at, in Jaffa Port.  All the waiters and servers were deaf.  In the middle, they gave a brief "lesson" in sign language.  It was really fun and very interesting. 

That Shabbat, we hosted two girls from Mitzpah Yericho, as part of Shabbat Yerushalayim.  All the youth groups in Jerusalem host kids from other branches, who do not live in Jerusalem.  During the day, after lunch, they all walk to the Kotel where they meet all the other religious kids from the country!!  It is a HUGE "happening!"

The walk takes about an hour and a half from where we live, but the kids never miss it!  There are buses after Shabbat, to take them home.

We hosted dinner in the evening.  Lunch, the kids ate with their youth group and we ate with good friends of ours.  We were three families at lunch, but since most of our kids were with their youth groups, it was actually a very small meal.  We were three "grown ups" (who are all pretty childlike) and five kids (out of 9).  It was fun!

After lunch, I collapsed into bed and slept for hours!  I needed that!

Sunday and Monday were rather mundane.  I had a great experience teaching swimming, but I'll post about that separately.  And, here we are, Tuesday, ever Chag HaShavuot. 

Chag Sameach!!  (Happy Holiday!)



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

With love and optimism,
RivkA

Unnecessary Discomfort

I had an entirely different post planned for this evening!  I will, I hope, post it tomorrow morning.  It is just a short, but positive, post about a change in my focus. It will have to wait.

Right now, I want to complain. 

I am having stomach cramps and I am upset, because they were completely avoidable.

I ran out of Tykerb, because I could not renew my prescription, because my approval had expired, and my health fund would not even ORDER the drugs until my approval was renewed, so I had to wait even longer, and I ran out of pills. (you can read about this outrageous incident here)

So, for several days, I did not take Tykerb.

Well, my stomach must have liked the "rest," because it is really objecting to the fact that I resumed taking this medication.

I started taking Tykerb again on Tuesday, and my stomach has been wreaking havoc on me, ever since!

The Imodium/Stop-it helps with diarrhea, but it has not alleviated the terrible cramping.

I would not have been experiencing this if I had not stopped and restarted treatment.

I had stomach problems from the Tykerb before, but not like this.

I know it will go away.

My body will reach a balance, like before, tenuous as it seemed.

Meanwhile, I just need to breathe and relax and wait.

This, too, shall pass.



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

With love and optimism,
RivkA

First Cycle: Xeloda & Tykerb (Medical Update)

The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don't even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset -- sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

forgot to include: I have swelling in my ankles again. I think. It can be hard to tell.

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.



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

With love and optimism,
RivkA

Medical Update -- Side Effects of Taxotere

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

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

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

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

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

Isn't it funny the things that bother us?


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

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

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

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


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


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


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



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

With love and optimism,
RivkA

Tummy Troubles

(from last night... I can't post from my bedroom. One day, we'll hook up that second router...)


My tummy is so sad.

No, not sad… upset.

That’s it.

My tummy is upset.

Apparently, Taxotere does not agree with my stomach.

They have been disagreeing with each other all week!

I do not have nausea… at least, nothing to get worked up about.

But I do have… well… I guess there is no way to say this nicely…

I have diarrhea.

(Those of you who know me can just pretend that you did not read these intimate details about my digestive tract)

What can I say? I have had a miserable day, most of which was spent in the bathroom.

I slept for several hours this afternoon and, when I woke up, I did not feel any better.

I sat down to dinner with my kids, but then I needed to excuse myself.

I asked my eldest to take care of cleaning up and putting her siblings to bed.

She had a teenage moment and quite articulately expressed her resentment about doing “my job.”

She was right. But what could I do?

Moshe was not home yet and I needed to go back to bed.

In the end, she did everything I asked.

I called her into my bedroom. She came right away and flopped down on her Abba’s (father’s) bed. When I asked her to do one more thing for me, she responded, rather dejectedly, “I thought you were calling me in to talk.”

Clearly, she needed some attention. (I may not always “get it” right away, but you don’t need to hit me over the head with a hammer!)

We started to talk about this and that and then I remembered. We needed to think of a name for our camp.

Now, our camp is a subject for a different post, but I will just share with you what happened while we were brainstorming.

We got the giggles.

Seriously!

You know how it is when you get the giggles…. You just cannot stop laughing.

Every silly suggestion makes you laugh even harder.

Well, we were rolling with laughter!

I answered the phone several times in the middle and I know we sounded quite loony! That just made us laugh even harder!

When we finally finished, we were both in really good moods.

Just then, my youngest came in, rather contrite.

My eldest, having received the attention she needed, gracefully exited the room and made way for her little sister.

I invited my youngest to sit on my bed and offered to comb out her long hair. There is something very nurturing about combing out hair. (I think my feelings about it stem from when I read Cheaper by the Dozen)

I tortured combed her hair for about 20 minutes, in the middle of which she apologized. (No need to elaborate about forgiven sins)

When I finished, and her hair was all shiny and smooth, and we had a nice reconciliatory hug. Then several more hugs, just because we love each other.

Lest you worry that my son was left out of all these good feelings, in between one of my trips between my bathroom and bedroom, I made sure to give him some positive feedback and get, of course, a nice good night hug!

Not too bad for a mom suffering from stomach problems.



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

With love and optimism,
RivkA