A Few Harrowing Days (Medical Update - Sort of....)

Sunday Morning:

1. Hadassah Ein Kerem:  Radiation
2. Sha'are Zedek:  Chemo (Doxil & Denosumab)
1. Doxil got canceled because it does bad things when combined with radiation. 
2. Denosunab (bone drug) got canceled because my Calcium was too low.
3. My platelets, hemoglobin, and various other things were also too low, so I needed two units of blood, BUT but it was too late and I would have to return tomorrow.
3. Home: Canceled swimming lessons for the next day & Went to Sleep.

Sunday Evening: 

1. Home:  My left foot ballooned up to 2-3 x the regular size; I could barely walk.
1. My GP, concerned that thrombosis caused the swelling, sent me to the ER.
2. Sha'are Zedek:  Ultrasound ruled out thrombosis. 
1. Option: Spend night at hospital and receive two units of blood while sleeping (or go home and receive blood in the morning). Tired of running to and from the hospitals, the idea of killing two birds with one stone (i.e. getting the blood while I slept) appealed to me.  However, I would only stay if Moshe agreed to go home, to be with the kids in the morning and reassure them that everything was okay. After a bit of persuasion, Moshe agreed. I was so tired,  I slept quite soundly, despite all the beeping and buzzing.

Monday Morning:

1. Sha'are Zedek:
1. Woke up to discover I only received one unit of blood during the night.
2. Received the second unit of blood.
3. Ate three bowls of farina (solet, milk and sugar) -- I was hungry!
4. A friend (SS) came to keep me company and, when I finished, to take me to radiation.
2. Hadassah Ein Kerem: Radiation
3. Home: Slept/Rested.

Tuesday Morning:

1. Sha'are Zedek:
1. Met with Oncologist, to discuss my liver.
2. Did a Liver Scan (no results yet)
2. Hadassah Ein Kerem:  Radiation.
3. Home: Rest

Wednesday Morning:

1. Hadassah Ein Kerem:  Radiation.
2. Home: Rest.

General Info:

1. Lip still numb
2. Rt. Foot still swollen and sore
3. Still Balding from radiation.
4. Hands and Feet still red and peeling
5. Still bruise fast and heal slowly.
6. Still have severe back pain.
7. Still have hip pain and muscular pain.
8. Still have issues with constipation and stomach cramps
9. Still have low appetite and nausea
10. Still feel tired and weak.

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

With love and optimism,
RivkA

Nutritional Supplements

During my mother's most recent visit, my mother could not help but notice how little I was eating.

Being a mom, she immediately expressed her concern about the possibility that my being so tired might be connected to malnutrition.

My husband has had the same concern for several months now.

I blew them both off, joking about all the weight I can afford to lose.

But I do not have as much to lose as before.  I can easily drop another 5 kilo, and even another 10, but not more than that.  It will not be long before I must eat more calories.

Of course, there is the very real question about whether or not I am suffering from malnutrition and whether or not I should be supplementing my diet.  I recognize that I probably should be supplementing somehow.

Yet, I have consistently refused to take anything.

I know that my reaction to the idea of taking Ensure is irrational.  I cannot help it.  Ensure, in my mind, is for sick people who are dying.  I cannot bear the idea of swallowing it.  I am not sick.  I am fine.

Except that I am not fine.  I am tired and weak... all the time.

I barely have enough energy to do the bare minimum.

I know that I need more nutrition.

When Taube passed away, her husband offered me her leftover nutritional supplements, various powders to add to food/drink.  Reluctantly, I accepted his offer, knowing that, in the not-so-distant future, I would need to supplement my diet.

I always joked that "when I get down to my 'ideal' weight, I will just eat ice cream all day!"  Yesterday, a friend took me out for ice cream and I could barely manage to eat anything.  The ice cream was too rich and too sweet.  I know that ice cream is insufficient nutritionally, but it has protein, calcium and fat.  Most important, I like the way it tastes and can always eat it.  Until now.  Suddenly, even eating ice cream is hard for me.  I did share frozen yoghurt blended with fruit, but I could not eat nearly what I used to eat.

For a few days, I was eating more and feeling optimistic that I might be heading in the right direction.  But I find myself even less interested in food now than before.

Today, I finally succumbed and took out a packet to make a "milkshake."  The "shake" was too sweet, and not to my liking, but I forced myself to drink the whole thing.

I know that one supplemental shake will not affect me significantly, but I really hope I will feel some change in my energy level.

Between the heat, my pain, and general exhaustion, I do not want to move!!

And I expect to take my kids on a 3 day camping trip?!  You bet I do!



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

With love and optimism,
RivkA

Vegetarian Pregnancy Problem -- What to do When Your Fetus Craves Meat?

I was a strict vegetarian for years.  You know, the crazy kind of vegetarian that only religious Jews can be.

"What, that chicken touched this potato?  Of course, I cannot eat the potato!"

Well, all that changed when I was pregnant...

In the middle of my first pregnancy, Moshe and I were visiting friends for Shabbat.  They served a very simple lunch, including a platter of Israeli cold cuts.

Now, I love deli meat (especially corned beef and pastrami).  But, let's face it, the deli meat in Israel is lousy.

The quality of the meat did not deter me.  I sat at the table and salivated.  I felt as if the earth was about to open up and swallow me (note the Korach connection to last week's parsha) and the only thing that could save me was to eat the cold cuts.

But I was a vegetarian!!

Now, I was not really a fanatical vegetarian.  I did not believe that meat eaters were morally inferior.  I simply believed that refraining from killing animals was a preferable way to live. I always claimed that if I craved meat, it would be a sign that my body needed the meat.

For years, eating meat was a non-issue.

Then, there I was, craving deli meats.

For an hour, I asked Moshe what I should do.  I just wanted him to tell me: "It is okay for you to eat the meat."

God bless my husband, he never tells me what to do.

Always sensitive, he tells me, instead: "It is your choice. Whatever you decide is okay."

NOT THE SAME!!

For an hour (an hour!), I suffered.

Then, I succumbed.

I swore my husband and my friends to secrecy; then I gobbled up the entire plate of cold cuts!

I thought my cravings for chicken would go away after I gave birth, but they did not.  Apparently, nursing had the same physical/nutritional effect on my body as being pregnant.  I needed meat.

Finally, I decided.  If I could face my vegan friend and admit that I was no longer vegetarian, I could cross over to "the dark side."

My friend, who is an ideological vegan, was so supportive.  I will forever be grateful to her for not judging me.

It took years for the cravings to end.

It took chemo to make chicken unappealing.

I am not likely to become vegetarian again.  I still like good deli and a good all-beef hot dog!  But I would rather drink a glass of milk than have a piece of chicken.

Meanwhile, it is part of our family lore, that it is my eldest daughter's fault that I am no longer vegetarian.

All the above is to explain why I was so touched when my eldest daughter called me over yesterday, to "come watch this (episode of Friends), it is all about us!"

The B-plot of the episode is about Phoebe, a strict vegetarian, who is pregnant and.... craves meat. 

We watched together and just laughed!!



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

With love and optimism,
RivkA

Food, Glorious Food -- Who Needs It??

Even though I was on a break from chemo (specifically, from Xeloda), my appetite during our vacation was nothing to write home about.

If it were up to me, I would have skipped meals altogether, and just snacked while we were on line for another ride.  I could have skipped most of the snacking too!

My family preferred actually sitting down and relaxing while they ate!  Can you believe it?

Eating sometimes took more than an hour!  We could have done two more rides (or more) during that time!

It took me a few days to accept the fact that, if we did not stop and eat, I would have a gang of grumpy campers with me! 

Towards the end of our trip, I actually skipped part of our meals and went on a few rides on my own (each time, another member of our party did come help me). 

Our last day, while Moshe met my parents for dinner, I took our two kids (the eldest was already back in Israel) to catch one of the short shows.  The kids would have an opportunity to eat after Moshe and I left for our show (La Nouba, Cirque du Soleil), and it was the last activity I would have a chance to do before we left.

There was so much to do, eating just felt like such a waste of time.



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

With love and optimism,
RivkA

The Chemotherapy Diet

Two years ago, on one of my first chemotherapy days, I noticed a woman weighing herself and commenting to her husband "I am disappearing," referring to all the weight she was losing.

My first, admittedly dark, thought was "halevai alai" ("I should only be so lucky").

I have been struggling with my weight since I am 14. Three pregnancies did not help.

In my case, neither did chemotherapy.

Despite periodic nausea, my appetite did not diminish. In fact, due to the steroids I was given as part of my treatments, I often had a greater appetite and increased fluid retention.

Combine that with lower physical activity, due to pain and/or exhaustion, and it is not hard to understand how I put on 10 kilo (22 pounds) over the past 2 years.

During radiation, I felt a slight decline in my appetite. More significantly, I noticed a dramatic increase in thirst. I assumed my eating and drinking habits would return to "normal" after I finished radiation.

But my habits have become even more extreme with the Xeloda.

For the first time in my life, I am just not hungry. I have very little desire to eat anything.

If, in the beginning of my new chemo regimen, I had a difficult time managing when I would eat vs. when I could take my various pills, I now have no problem.

When I wake up, I take the Tykerb right away, because I know that I will not be hungry anyway for at least an hour, if not several hours.

When I finally feel like something to eat, I will have a small meal and then take the Xeloda.

If I have a small enough "breakfast," I might be able to eat something small in the middle of the day.

However, more often than not, I will have a second "meal" later in the day, after which I will take my second dose of Xeloda. Then I am done eating for the day.

I rarely snack anymore. For the most part, the very thought of food makes me nauseas. Food has to be really good to entice me to eat.

On the other hand, I am thirsty all the time. I am constantly drinking water. If I don't drink enough, I get a headache.

If I did not have to eat before taking Xeloda, I would eat even less.

In the five weeks I have been taking Xeloda, I have lost 5 kilo (11 pounds).

Not a bad diet, if you need one....



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