MRI — Good News!

(cross posted from Coffee and Chemo)

“Can the radiation make the tumors go away?” I asked, first to my oncologist, then the radiologist, then the head of radiology.

I was devastated by the discovery of brain mets. I could not accept that the brain mets would not go away.

“Sometimes the tumors shrink from radiation,” I was told, with reservation.

“But can they be totally destroyed?” I persisted.

“Rarely,” I was told, by caring doctors who did not want to give me false hope.

The main goal of the radiation was to stop the tumors from growing any further.

That was not good enough for me. I prayed every day, during my five minutes of radiation, for the radiation to completely destroy the tumors.

Well, the tumors might not be 100% gone, but they have certainly lost some of their power!

We have not yet received the written report, but the images look a lot cleaner! We only saw one or two “shadows,” only one of which is still a remnant of a tumor, according to my doctor’s analysis (though he is the first to acknowlege that he is not a radiologist).

My doctor, upon reading the report, sent me the following message right away:

got the report of your MRI and the improvement we thought we saw is REAL.

This does not mean that I am done with brain mets. Like the bone mets, brain mets never goes away. Still, I doubt anyone expected such good results.

Thank you all so much for your prayers!! God is listening!!

I cannot think of a better way to start the new year!*

*Rosh HaShanah, the Jewish new year, is this Friday night, Saturday, and Sunday

First Cycle: Xeloda & Tykerb (Medical Update)

(cross posted from Coffee and Chemo
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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)

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

With love and optimism,
RivkA

Unexpected Diagnosis

(cross posted from Coffee and Chemo, from a week ago)
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Several months ago, I noticed that I had stopped turning my head whenever I could avoid it. I positioned myself (and others) so that I could look at them “head-on.” I asked my kids to stand in front of me to talk, rather than turning around to face them when they called from behind. I had to concentrate more when driving.

When I mentioned my new limitations, my oncologist said we should do an MRI. Knowing that the health funds are reluctant to approve more expensive imaging, he sent me for a CT of my head and neck. I suggested that we should still try to get approval for the MRI, so he gave me a referral for that as well.

The CT did not show anything new. So, when the health fund approved the MRI, I questioned my doctor if it was really necessary. He said I should do it, so I did.

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Last Thursday should have been an ordinary chemo day.

I had some concerns about increasing pain in my bones, but my markers were still normal and there seemed to be no other indication that anything might be wrong.

So as we sat in our oncologist’s office, reviewing my case, Moshe casually asked our oncologist if he had seen the results of the MRI of my head that I had done over two weeks ago. Hadassa will not send the results to me, only to my doctor. Except, they had not sent the results to my doctor either. So my oncologist picked up the phone, called the radiology department at Hadassa Hospital and then excused himself to go pick up the fax of the MRI report.

A few minutes later, he walked in, placed the report on his desk, and announced that he did not like what he read. He was not joking around.

He called Hadassah again. This time he asked the head of the radiology department to look over the images. The head of radiology confirmed the report.

I have cancer in my brain.

“We were not supposed to know about this yet,” my oncologist pronounced.

I have no symptoms that prompted us to do the MRI.

“We did the MRI by accident,” continued my doctor, clearly disturbed up by this unexpected turn of events.

My oncologist asked to see the disc from the MRI, so that he could examine the images himself. Then he wanted to consult with someone else. We needed to make some decisions, and he wanted to take some time to consider the options.

I listened, as if from a different dimension.

My oncologist informed us that we can live with this. Brain metastases can be controlled and remain stable for years.

But it will not go away.

I wanted to know how this might affect my 20-year plan.

“Well,” my oncologist responded, taking his time, “twenty years is a long plan….”

We already established that 20 years was a bit of a long shot.

“I promise you that I will let you know when things are imminent,” my doctor told me seriously, referring to the end stages of cancer for the first time.

“I want to know before that,” I responded, explaining, “When things are imminent, you cannot do anything.”

“I want to know when I hit the ‘two year mark'” I continued, “I want to know when I still have the time and energy to go to Disneyworld with my kids!”

My oncologist turned serious again, “We usually do not discover tumors this early, before they are symptomatic.”

Once again, my case is unusual and leaves us full of uncertainty.

“When we discover large tumors with severe symptoms,” he continued, firmly but quietly, “two years would be considered a long time.”

I could no longer hold back my tears. As they rolled silently down my cheeks, I reach for Moshe’s hand.

“I want you to listen carefully to what I said…” my oncologist began, but I cut him off.

I understood. My tumors are small. I have no symptoms. The tumors can be controlled. I can live with this.

But no matter how you cut it, tumors in your brain are just not good.

My oncologist canceled chemo.

My head was spinning.

I needed to stop crying.

I did not want to go “out there,” to the chemo ward, where I am always smiling, with tears streaming down my cheeks.

I needed to hold myself together until I could get home.

Then I could fall apart.

My head was swirling.

How was I going to tell my mother?

How was I going to tell my kids?

No chemo for YOU! NEXT!!

(cross posted from Coffee and Chemo)

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!