Shiatsu

I wrote this on November 25th, just a few weeks before we left on vacation.  It must have gotten lost in the shuffle, because I see I never posted it.
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By last Wednesday, I was a ball of nerves.  Too much to do and too little time!

I needed to slow down.

I slept late.  Really late.  10:30 in the morning late.

The Rebbetzin came for a visit around 11:00, just in time for my morning coffee.  (OK, I admit it: despite the blog title, I don't regularly drink coffee, not even in the morning.  I am a "social drinker." I only drink with someone else who is drinking.)

I really enjoyed talking with the Rebbetzin.  She still intimidates me, but she is so nice, and so thoughtful.  She brought over a delicious vegetable soup!  We all love soup and her soups are really nutricious and so good!

After she left, I did some chores -- not fun, but they gotta' get done.

Then, my friend, Idit, came over for Shiatsu.

What a treat!!  When she was finished, I felt relaxed and calm, and ready to handle what needed to be done.  What a gift!


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In addition to practicing Shiatsu professionally, Idit volunteers her services to me and to the Yuri Stern Foundation.

Idit has a wonderful, warm, and relaxing treatment room in her home.
  
For regular treatments or to treat yourself to something special:
Idit Amir
077-757-8949
052-660-8442
Idit Amir amir.idit@gmail.com



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

With love and optimism,
RivkA

Family Dynamics (You can take them out of their routine, but you can't take their habbits out of them!)

Overall, we had a wonderful time in Orlando!

Admittedly, we had a few bumps here and there. 

I had imagined some sort of magical transformation that would create a conflict-free vacation.  I guess, even Disney/Universal do not have that power.  But we all worked hard to make our vacation a good family experience!

It also took some time to figure out who really wanted to do what! 

Surprisingly, we did not all want to do the same things at the same time. (Shocking, I know!)

That should have been obvious, but it was not (at least, not to me).  I worked on "letting go," not an easy transition for me.

Food was a big deal.  Since I barely wanted to eat (and many food smells made me nauseas), I always wanted to go on another ride, rather than sit down for an hour and ("waste time") eating lunch.  The four other members of my party actually got hungry and needed to eat.  Moreover, my kids all inherited my family's trait of getting really obnoxious when hungry! 

During our first week, I had to remind myself that we would be going back to all the parks (or most of them) the next week, and I would get another chance to do everything! 

I really missed my eldest daughter when she went back home (she's left early, so that she would not miss the final week of rehearsals for Pirates of Penzance).  She was my "permanent partner" on all the really scary roller coaster rides!  (Moshe gets motion sick, as does my younger daughter, so they skipped those rides.)    My son, God bless him, does not always want to hold his mother's hand (it is so "uncool" for a teenage boy to hold his mother's hand.  I get it.), but when my eldest left, he was really supportive and agreed to hold my hand for a few of the really scary rides (just as long as there were no witnesses).

My eldest was also a huge help getting everything ready in the mornings, and keeping things organized during the day!

That does not diminish the contribution of my other two kids, who also did their best to be helpful!  All the kids carried backpacks all day and pushed their mom around in the wheelchair (which was not always so easy).

Still, when my eldest left, the dynamic also changed.

Add to the equation that, not only did my daughter leave but, my parents joined us during that second week.

My dad actually took over a lot of the tasks that my eldest did -- especially pushing me around (he wanted the extra exercise!).

In some ways, my dad helped me to keep things in perspective.  I think (at least, I hope) I was a bit calmer during that second week.

I was surprised that I had to focus so much energy on "taking it easy."

I realized I should apply the same efforts in my "everyday life."

If our family dynamics improve as a result of this vacation, we really will have had a magical experience!



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

With love and optimism,
RivkA

Uncertainty

So, if there is one thing that I am learning as a cancer patient, it is to recognize that I cannot control everything.

For the past 6 months, my markers have been steadily rising and my pain has been increasing.

After months of tests, scans, deliberations, and sending me for a second opinion, my oncologist has determined that this particular drug combo is no longer working.

I went in for chemo last Sunday, and my oncologist sent me home.

Well, not right away. After my blood test, we sat with my oncologist for about half an hour, discussing options. Both he and my second opinion oncologist (SOO) recommend staying with Herceptin and switching to Taxol. There is uncertainly about whether or not the health fund will approve the change (Herceptin is very expensive, and the health fund might insist a change of both treatments).

Xeloda, which is similar to Taxol, but less toxic, might be a "nicer" drug for me, but both doctors recommended "using up" Taxol first. My SOO suggested saving the Xeloda for use with the drug we will use when the Herceptin stops working. And my oncologist pointed out that I am only available for a particular study if I have already used Taxol. Moreover, the health fund will not approve the use of Xeloda before Taxol has been used.

My oncologist suggested I try to get into a study that would fund Herceptin and Taxol. But that study would make me ineligible to continue with the bone drug study, and I want to stay with the bone drug study.*

We also discussed the side effects of Taxol. I will probably lose my hair. (Want to know how I feel about my hair? Read this) I must admit, I have grown accustomed to having chemo and hair. I do not really want to start down that road now. I do not want to look sick. I will also probably suffer from neuropathy (a tingling of the fingers and toes, sometimes accompanied by a loss of dexterity). That really frightens me. And I might become very tired again. That does not excite me either. I took some deep breathes, and tried very hard to stay calm (read: not cry).

We walked out of his office with a letter to "send immediately" to my health fund, requesting the new chemo (Taxol).

I updated one of the nurses, with whom I am particularly friendly. She informed me that if you have to drop out of a study, sometimes the company will still pay for you to continue receiving the trial drugs. So that, if I need to enter a new study, perhaps I can still receive the bone drugs. (good to know). After she removed my "port" (the needle and tubing that connects my port to the IV), she suggested that I ask the secretary to fax the letter to my health fund, and wished me luck.

I faxed the letter, then my friend drove me home.

A few hours later, my oncologist called.

"Don't send the letter yet," he instructed.

"Too late," I told him, explaining that we had faxed the letter before we left the oncology ward.

"What's going on?" I asked, perplexed.

"Your marker are down," he answered, just as perplexed.

After rising around 20 points every month, for the past six months, my CA-125 marker suddenly dropped 54 points (from 170 to 116). My CEA marker also dropped (from 3.6 to 2.6).

"What does that mean?" I asked, searching for understanding.

"I don't know," he answered honestly, "I wanted some extra time to think."

So, we waited for the PET scan results, hoping they might shed some light on my situation.

He got the report yesterday (Sunday). There is nothing new on the PET scan, it only shows bone lesions. GOOD NEWS for me!! But not at all helpful in determining treatment (though now I am ineligible for that new study, since bone lesions are too difficult to measure, and no other tumors are evident at this time).

I went in on Sunday to test my markers again. No further news yet.

So, here I am, the night before chemo, and I do not know what chemo I might be getting or if I am getting chemo at all.



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

With love and optimism,
RivkA

*I am either getting Zomera or a new drug called Denosumab. Participating in the trial is a win-win for me. The Zomera is the next generation drug of its kind, and is not covered by the health funds. And the Denosumab is a new drug which is not even available on the market. So, either way, I'm getting a better drug than I would have gotten had I not been in the study.