Telling the Kids... Or Not... ?

This is what I felt two weeks ago, when I first learned about my brain mets.
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I was devastated.

My first thought, beyond my own anguish, was how to tell my mom.
(fast forward: My parents were really terrific when I told them. Though they were clearly distraught by the news, they did not freak out. They asked intelligent questions, understood that I did not have all the answers, and just continued to shower me with love and encouragement.)

It was not until one of the nurses asked me about it, that I realized I would have to tell my kids.

In those first few moments, I did not know whether to tell them right away or not. We did not have much information and we honestly would not be able to answer many questions. Yet I did not now how I could not tell my kids right away. I could not stop crying; I would have to explain why. Even if I could stop crying, my kids are smart and sensitive, they would figure out that something is wrong.

I also realized that I could not talk, or write, about any of this until they knew. It would be unfair to tell other people before them. Not only do they have the right to know what is going on, but I do not want them to have to deal with other people's reactions from a position where the other person knows what is going on and they don't.

I would basically have little or no support until the kids knew. That seemed unfair as well. My decision about when to tell the kids should be about them, not about me. On the other hand, this news was so big, how could I just pretend everything was "normal."

I consulted with the social worker. As she spoke with us, I realized that I felt quite strongly about telling the kids before they suspected anything was wrong.

Maybe if I found out during the week, life would be so busy that I could put it off telling them for a few days, until we had more information and more answers. But the next day was Shabbat, when we spend so much intense time together. The kids would pick up on the non-verbal stuff, even if Moshe and I were careful not to discuss anything around them.

Unacceptable. I never want my kids to feel like we are hiding things from them. Knowing that we are completely open and upfront with them gives them the confidence to take what we tell them at face value and not be troubled by infinite doubts and fears.

On the way home, Moshe and I discussed this further. Moshe suggested playing things by ear. We did not have to decide right now. We could wait a bit and see how things go.

That took a lot of pressure off. We had time. Time to absorb the news ourselves and time to figure out how to frame the news to our kids. No one would be home for several hours.

Moshe wondered if he should stay home with me. He had a major deadline at work, so I insisted that he go in to work. I would be fine.

I called a close friend, who I knew would be a good listener. She was not home.

I called another close friend. It was good to talk with her.

Then, I was alone. Alone with this aweful news.

Later, the first friend called back. When she heard the news, she offered to come right over. She has five small kids and it is often challenging for her to get out but, at that moment, she could come. I decided to stop stuggling to keep it all together -- "Yes," I accepted her offer, "please come."

My friend was still over when my youngest daughter came home. My daughter had some things to do for school (remember, this was two weeks ago), so she went into the computer room to work. I told her that I would be in my room, with my friend. We spoke for an hour or so. Though I still felt overwhelmed and extremely frightened, I also felt calmer and ready to face the world. More importantly, I felt ready to face my kids.

That evening, our home was filled with more than the usual chaos. I had spent the day in turmoil. Moshe spent the day dealing with all the beaurocracy of my new diagnosis. My eldest spent the day at the beach with friends of hers from school and came home exhausted and full of energy at the same time, as only teenagers can be! My son spent the afternoon at school, preparing for their end-of-the-year play (more on that another time). And my youngest finally finished the project that she had to turn in to her teacher. Everyone wanted my attention!

Did I mention I had tickets to a play that night?

OK, there was no way I could listen to all my kids, share what I had to share, help them absorb it and leave to see a play. Something had to go. I decided I could wait to share my news.

So, I listened as everyone clamored for attention, loving the healthy chaos of it all.

Then I pulled myself together, put a smile on my face, and went out to have a good time.



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

With love and optimism,
RivkA

Free Today?

real post coming soon....

I'm on my way to Hadassah for radiation & a PET scan.

I had a great "date" for today, but her daughter is really sick, so she had to cancel.

If you are around and have the morning/early afternoon free, give me a call if you can come hang out with me.

Meanwhile, I'm bringing a great book with me!



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

With love and optimism,
RivkA

Treatment Plan (Medical Update) -- Radiation

The tumors are small, so I do not need surgery, thank God.

We will switch chemo treatments, most likely to Xeloda and Lapanitib. We are still awaiting approval from the health fund. In any case, we will not start a new round of chemo until we get the results from the PET scan that I am having this Tuesday.

The first round of treatment will be radiation.

On Sunday my oncologist called to tell me he made an appointment for me to begin radiation therapy on Tuesday.

Things were moving quickly!

I read up about radiation options (at BrainMetsBC.org) and liked the idea of stereotactic radiosurgery (SRS) (not really surgery, since they do not cut into your brain) -- they pinpoint the exact area of the tumor and bombard it with high doses of radiation. There are less side effects from SRS than from whole brain radiation (WBR), though WBR is often recommended in addition to SRS.

On Tuesday, the onco-radiologist who met with us (Moshe came with me), explained that I have too many tumors for any of SRS procedures (Gammaknife, Cyberknife, or Xknife). She patiently showed us the images of my brain, and pointed out the tumors. We counted 8 or 9 tumors.

She told me that, after consultation with the head of the department, they recommend WBR, for 20 treatments. I did not want WBR, and asked to speak with the head of the department.

Since I would need WBR, even if I also received STS, I went for the "simulation" while waiting for the department head to return to the department.

The "simulation" is where they set you up for radiation. There is a special machine they use to mark exactly where you will receive radiation. In my case, the set up included making a mask of my head to hold it in the same place and position.

I closed my eyes and the technician placed a warm mesh mold on my face and pulled it down over my head. I held my head still as the mold cooled and formed a hardened mold. I had purposely left my mouth open for easier breathing, but as the mold cooled it pulled my jaw closed so only a small opening was left. I worried that I would not be able to breath easily. The technician assured me that if I found it difficult to breath, the technicians could cut open the area of my mouth.

Then I left to wait for the department head.

There was another woman waiting already and then another couple joined us in the waiting area. Realizing that he might not know to call us in, I returned to the technician to ask how he would know that we were waiting for him. She told me she would let him know.

Good move!

We were the first ones called in.

The head of the department patiently and kindly explained to me, again, the reasons for recommending WBR, primarily because I had over 3 tumors. He also showed us the largest study comparing tumors treated with and without STS and read the summary to us: STS is dramatically effective when there is only one tumor. When there are 2-4 tumors, STS is still significantly effective. However, there is no evidence that STS improves recurrance or survival rates when there are more than 4 tumors.

He did not rule out the use of STS in the future, but certainly saw no benefit at this time. He is one of the top radio-oncologists and his position is consistent with the literature. He did not rush us and answered all our questions, even the ones we repeated from different angles.

I would begin WBR treatment on Thursday.

That first week, I would also receive radiation on Friday. Then I would receive radiation every day, Sunday through Thursday, for a total of four weeks (20 treatments).



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

With love and optimism,
RivkA

Cancer on the Brain

My oncologist sat there so calmly while I focused on breathing, and not falling apart.

All these years, I have said to myself (and to others), "thank God, it's not in my brain!"

Now, here I sat, in my own worst nightmare.

"We can treat this," my doctor said, reassuringly.

Only, I did not find any of his words reassuring.

"It's in my brain, my brain, my brain," I repeated, softly.

"It was in your liver, your liver, your liver," responded my oncologist, leaning forward and looking me directly in my eyes.

I met his gaze and challenged him, "but the brain is worse!"

"Wrong!" my oncologist corrected me. "Disease in your liver can run you over like a railroad train."

Whoa, talk about cognitive dissonance.

Mets in the liver is a serious threat. Yet, since the mets in my liver responded to treatment (there are no more tumors visible in my liver), and I never experienced any symptoms, I do not feel scared by it.

Now, even though I do not have any symptoms, and we expect the tumors to respond to treatment, I still feel very scared.

It is not completely rational.

Mets in the brain seems so much scarier.



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

With love and optimism,
RivkA

Medical Update: Unexpected Diagnosis -- Bad News

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?



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

With love and optimism,
RivkA

Learning to Do Laundry

The first time my son "did his own laundry," he just put things in the washing machine.

Thank God that was all he did!

We had just purchased a new machine because our sweet, but not very competent, cleaner overloaded our old machine one too many times.

With the new machine came my new idea to teach my kids to do their own laundry!

My son finally rose to the call and I was so happy... until I went to the machine to show him how to add detergent.

He had packed that new machine so full that it might have called it quits right then and there!

I tried to explain how to fill the machine and suggested that he have me check it for the first few times.

Well, that was enough to scare my son away from doing yet another task.

Between the challenge of knowing how much is “enough but not too much” and the burden of having to get me to come check it, my son did not even attempt to do another load of laundry...

... until yesterday.

He needed socks for a tiyul (hike) and I told him to sort through the laundry and find all the socks buried there.

When we packed his tiyul bag last night, I realized I forgot to do the laundry.

I had seen a few socks in the laundry, but with everything else that was going on, I did not get around to adding anything and starting the load.

"I did it," my son told me, proudly.

He ran a load with only 10 socks in it!!!

OK, OK, I know, I know. I should have just told him "good job!" I should have just commended him for taking care of it himself. I should have kept my eye on my goal, which is for him to do his own laundry!

But a load of laundry with only 10 socks, maybe less!?!?!

I could not stop myself from telling him that he really should have added other items, since it is really a waste of water and electricity (not to mention money).

Do I get any points for not yelling?

At the time, I felt so proud of myself for correcting him just once, gently, just so he should know. I even made sure to emphasize that the mistake was “no big deal.”

He did not seem too upset by the whole thing.

We went to the machine to quickly place the socks in the dryer.

Then my son remembered.

With a sheepish grin, he informed me, "I forgot to add detergent."



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

With love and optimism,
RivkA

So Much To Write... So Little Time

These past few days have been so busy!

I have so much to share, but it will take some time to post everything, especially since I need to run some of these posts by my kids.

I want to make sure that I do not post anything that will make them feel uncomfortable.

They do not always want to the whole world to be privy to their innermost thoughts.

It can be tough to have a mom who blogs about you!



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

With love and optimism,
RivkA