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

(cross posted from Coffee and Chemo)

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.

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?

Happy Birthday, Mom

November 26, 2008. Today is my mother’s birthday. The day is a marker now, as another year has passed without her at the other end of the phone, her melodic voice dancing across the wire.

Our voices are the same. As a teen it was funny how many of her friends launched into phone conversations with me before my giggle alerted them to the fact that they had the daughter, not the woman. Now when I want to hear her voice I can comfort myself by talking, using her cadence, phrases and sighs. What I can’t do is replicate her singing voice. Standing next to her at Mass I would feel warmth flow down through my body as I listened to that voice resonating with deep timbre. When a song ended I would look up at her and silently wish, “Please don’t stop.” Maybe I continued attending Mass to hear her voice; I know that the chords of certain hymns will bring me to tears. Somewhere, imprinted in my heart, she’s singing to me.

Mom was only 67 when she died. The cancer was diagnosed mere months after my dad died — from cancer — and she went from a relatively good prognosis at Stage I to spine and brain mets within two years. When I discovered that I, too, had breast cancer I was not surprised. Her father had been diagnosed with breast cancer and later died from prostate cancer. It was a matter of when, not if my turn would come. I did think I’d have more time, though.

By some weird coincidence today is also the day I went to the oncologist to talk about several falls I’ve had and can’t really explain away. Back pain, aching ribs. Headaches when I rarely get them. It’s the first time I’ve gone to the oncologist out of fear. Agent of Doom #2 says he doesn’t think the symptoms are cancer-related but he wants to reassure me and in oncology that’s with a brain MRI. The date for that test happens to be the day before the anniversary of my mom’s passing. Symmetry. I find comfort in that.

Only twelve years ago I was holding her hand, telling her in the voice we shared to go, to find peace, hoping she could hear me through the morphine haze. My brother had finally fallen asleep in the hospice bed a few feet away, and my sister had just gone into the bathroom when the labored breathing stopped. While I waited for her to take another breath I held my own. How could she bear any more? Yet I wanted her to open her eyes and be my mom again. I remember the mix of raw emotions flooding through me as I realized my mother had taken her last breath in my presence. By the time I told my brother and sister what had happened I felt the whirl of grief being replaced with sweetness and calm, like the sound of her voice on Sunday morning. 

You went first, Mom, and I learned a few things about advocating for the patient. Now the patient is me and I’m doing my best to get the right care, the right tests, the right docs. Thank you for taking some of the fear away. 

Love to you, always.

Hedgie

Cross-posted to Princess Hedgehog Chronicles.