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Wednesday, July 1, 2009

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.

------------------------------------------------------------------

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

73 comments:

Anonymous said...

We love you so much...

ABH

Daria said...

My thoughts are with you ... sending love and hugs and courage.

tesyaa said...

There are no words. I hope it helps that people are thinking of you and davening for you.

adena said...

I was afraid it was something like this, but hoping it was not. All I can say it, I know you will live your life to its fullest. Thinking of you.

Rahel said...

RivkA, I'm sending you lots of love and hugs.

SuperRaizy said...

Oh, RivkA....
Sending you tons and tons of happy, healing thoughts.

Megan said...

Thinking of you and asking G-d for good things for you Rivka.

Anonymous said...

devastated. davening for you.

Rebecca said...

RivkA, I love you! I'm devastated but hopeful at the same time. I've been davening! I hope you got my email earlier about Gamma Knife and Cyber Knife Surgeries. If you need more info, let me know. Its an awesome way to get rid of tumors without it being invasive. If it can be done in your case, its worth a shot!
~Rebecca

tnspr569 said...

Hoping and praying for you here. Your bravery and disposition are truly admirable.

Anonymous said...

RivkA,

Sending love your way. Since you miraculously found out about this early and it is something they can control to some degree, I really hope this improves your chances to continue living for a LONG time. Although it's absolutely devastating to find out, since it's something that modern medicine can fight against, it's better to start that fight sooner rather than later. Sending those prayers and healing thoughts with even greater intensity.

- ss

muse said...

Refuah shleimah, miracles and blessings.
Lots of love!

chanie said...

thinking of you...

Robin said...

I'm holding you, Moshe and the kids very close in my heart, and sending every good thought I've got in your direction.

Much love to you my friend.

toby said...

Oh, I'm crying here at work!
But everyone is right - it's miraculous that this was discovered before it "should have been," and now you have a head start on the fight! Keep strong - we're all behind you!

Elliot Jaffe said...

You are one of the strongest people I know. Your warm and caring and trying to live your life. I knew Randy Pausch from my school days. He had a similar outlook.

May you stay strong and maintain a warm caring relationship with your family.

Gila said...

Sending you love and prayers and good wishes...and as I said, you still owe me Shabbat dinner. Tumor or no.

Remember (in part thanks to you) I am now local. Let me know if you need anything.

MJE said...

RifkA,

May Hashem let this just be something for you to look back on many years from now and say "Wow, that happened sooo long ago and I have felt so good since then!"

I am davening for you.

Malka E.

Leora said...

Thinking of you, praying for you.

Anonymous said...

Dear dear Rivka,

I cannot control my tears. I just want to hug you and make it better.
Lots of love your way...
Rochie

Lynne said...

Just letting you know I love you so much - and there was a reason it was found out early. **hugs**

Love
Lynne

Cheryl said...

Oh RivkA, oh dear. I have no words, I'm so sorry. Sending hugs and continued prayer.

G6 said...

The cyber community continues to send you love, support and tefillos.
May Hashem provide you and your family with increased strength.
{{{{{hugs}}}}}}

ilanadavita said...

My thought are with you and I will pray for you.

zahava said...

Sending love, support, and t'filot to you and yours.

camerapatty said...

Please accept my offering of Prayers for you and your family!

Juggling Frogs said...

Davening and thinking of you, for a refuah shelima, and for/with continued and enduring 'hope and optimism.'

Jacob Da Jew said...

Very sorry to hear this, refuah shleimah. got here via Leora/

Anonymous said...

Modern medicine does sometimes help make miracles. Like you said, people can live with brain metastasis for a long time. Your positive outlook is so important to your immune system, you can't let this test change that. How does the song go? You get up, dust yourself off and start all over again....
Love,
Ellen L.

Jew Wishes said...

I will daven for you. I read about your post through Leora.

Ye'he Sh'mey Raba Mevorach said...

Oh RivkA! My friend (the one who wrote you off-line) her mom has had a brain tumor (symptomatic, mind you) for YEARS. He's not kidding that they are controllable, treatable whatever. They really are. Really.

Sending you big big big hugs and if you want to talk to a brain surgeon, we know a good one. Brains are different than the rest of your body. Really. Trust me on this one. Brain tumors are different.

Gosh. I love you so much and we will continue to daven but try not to let the idea that it's your brain scare you too much. I'd be much more worried if it was your pancreas. Seriously.

Anonymous said...

I pray for a refuah shlema vemehera for RivkA bat Teirtzel.

Mark [came here from Treppenwitz]

Sarah said...

Oh man, oh man, oh man.

I'm so sorry you got such hard news! So, so sorry to hear this.

I don't know what else to say.

With love,
Sarah B.

weese said...

RivkA, I am a friend of David's from the US. I am also a strong believer in the healing power of spiritual energy.
I willingly share mine with you now.

love and light.
~weese

Peter said...

Sending you all my warm and loving thoughts, I'm praying for you and your family, wishing you strength and hope and faith.

Peter (coming from David's Treppenwitz)

Anonymous said...

Knowing earlier is better. I'm so sorry, but I know you're strong. My thoughts and prayers are with you.
Larry (Stiefel)

Barzilai said...

Every day in tefilla, we call God the "Borei Refu'os," the creator of cures. Each morning when you wake up, there is hope for good news. There is a cure out there; we have faith that what you have is cureable. I pray it is found quickly!

Ben-Yehudah said...

B"H

{sigh} I wish I had something inspirational to say, but I don't.

I will tell you what I will not say.

I will not tell you how you should or should not feel. I will not tell you what you should or should not do. And I will not tell you what's going to happen.

I don't like it when people don't do those things to me, so I try not to do those things to other people.

If you don't mind though, in addition to praying for your refuah shlemah, I would like to pray that HaShem will grant you [additional] guidance, grant you [additional] wisdom, and guard over your family.

I hope that's ok.

I would also like to thank you for writing your story.

I believe very strongly that you're helping other people with cancer, their families, as well as everyone else who reads your blog.

Baila said...

RivkA,

Simply put, you are an inspiration. I know this is a scary time for you and I wish I had the words that would give you comfort.

We are all, blogger friends and real life friends, praying for you and sending you healing, happy thoughts. Stay strong when you can, and when you can't, lean on the people that are there for you to do so.

Besides prayers and happy healing thoughts, I'm sending you love.

Teresa said...

Refuah shleimah RivkA!

I will daven for you. Please go to the Kotel and daven too - let your tears flow there and may Hash-m bless you with healing.

Anonymous said...

Oh Rivka, this was obviously not the post I (nor anyone) was hoping to read - not now, not ever.

I really don't have words and I know I can't start to imagine the whirlwind of emotion that you must be facing - and all your decisions to make. But one thing I do know about you is that you'll make the best decisions you can for you and your family - and you'll keep working hard to put a smile on all of our faces when you can.

Know that our prayers are with you and that hopefully, the fact that this was found by 'accident' is a blessing of a sort to allow you to treat the issues long before they are symptomatic so that you really can do everything you want in your 20 year plan.

sheri

tzip said...

רפואה שלימה!

אפילו חרב חדה מונחת על צוארו של אדם, אל תתיאש מן הרחמים

Anonymous said...

Dearest RivkA,

We are all with you and your family in so many ways. Wishing you all the koach you need.

Lots of love, hugs, brachot, and healing thoughts to you all.

-Na'amah

rickismom said...

OMG
OMG
OMG
Rivka, I am crying. I really wanted and wished for you for your twenty year plan. But I knew with my Dad, it didn't go that way. That's why I visited him when he was still pretty good.

Whatever you have, however long you have, ENJOY!!! And maybe maybe you will be one of those "we don't know how, but she was fine for XXXX years." HUGS, and prayers.

Reva said...

My heart hurts reading this. You are just so full of life. I'm sending all my prayers and good thoughts in your direction. Love, Reva

Jack said...

RivkA,

Sorry to hear this. I'll daven for you.

aliyah06 said...

Oh, no!!

I will add my tehillim to everyone else's.....but I also want you to know that my mom has had a brain tumor for 20 years--and for totally unexplained reasons, it
j u s t s t o p p e d g r o w i n g.....docs check it, watch it and don't do anything because they're afraid if they mess with it, it might start growing again.

You've never given up--don't give up now!

sparrow said...

Very sad to hear this news. I will pray for you.

Anonymous said...

I see hashgachah in your finding out "early," enabling you to hit the ground running. I have seen you on several bloglists, but I got here today via Treppenwitz. I have asked my friends to join me in sending prayers and positive energy. I am a two-time cancer survivor and I know first-hand the power of davening.
Malka

Safranit said...

I finally caught my breath enough to write...please remember you are a special case, and don't look at those around you to compare situations.

My thoughts and prayers are with you...

annie said...

RivkA, I will be davening for you for a speedy refuah shlema. I got here via Treppenwitz and I hope that my prayers join all the other prayers of all your friends and online buddies, until the prayer chain reaches Heaven.

The back of the hill said...

Be strong. And all the best.

Jeffrey Woolf said...

You are in my prayers, three times a day.
רפואה שלימה

Yehuda said...

Our thoughts are with you, too.

Jon and Rachel

westbankmama said...

Sorry to hear this news. I'll add you to my tehillim list, and daven not just for a refuah shleima but for strength to cope too...

Anonymous said...

Giant prayers and hugs from Atlanta. OXOXOXOX

Karen said...

RivkA,

First of all, you have to believe your doctors when they say that this can be controlled and that you still have lots and lots of time. I understand your feeling that having it in your brain is scarier, you know about my perspective on that. But they say we only use less than 10% of our brains, remember, you have a lot to spare. :) Just look at me!

When you say that you want to know when you have two years, so that you'll still have time to take your kids to Disney -- Do those things now. We should ALL do those things now. NONE of us knows how much healthy, active, productive time we have left, we all put things off because we're busy and we can always do it later. Time goes by and kids grow up and things happen. And you know that better than most of us, that there are no guarantees what the future will bring. Let's get you to Disney. If iy"H you're still able to do it, you'll take them somewhere else later. I would have given you this advice even BEFORE the brain mets. I think everyone should ask themselves, if I only had x amount of time left, what would I want to do? And why aren't I doing it? What am I waiting for?

RivkA with a capital A said...

I am overwhelmed by the sheer number of comments (57!!) and by the outpouring of love and support from so many bloggers!!

Your prayers mean so much to me. Please keep knocking on Heaven's door -- God is listening!

Just a few comments on the comments (I read them all!!):

Elliot -- I was (am?) a Randy Pausch groupie! I wish I had known him. (my husband would have loved ot be in his program at CM) I listened to Randy Pausch's "last lecture" at least 5 times and I also listened to his lecture on time management, which was his favorite.

I am still learning from him. He was far more disciplined than I am and also far more relaxed. (an example of his influence: letting my children do what they want to their walls in their rooms). His accomplishments far surpass any I can hope to achieve (he has truly influenced a generation!), though I still aspire to achieve more than I have thus far. I do think our outlooks are similar; his messages certainly resonated with me.

Your comparing me to him is the highest compliment. Thank you!


Gila -- always good to have friends who are don't pussy foot around my cancer! Of course you're coming for Shabbat, we would not let you off the hook that easy!!

Ellen L -- I did a search for the song (but can't listen to it now, 'cause I will wake up my kids)

Tzippy -- thanks for the pasuk! I had to look it up since I could not place the reference. (you are so lucky that you grew up and got your education here!!)

Karen -- please email me and tell mw which Karen you are!! I know so many!!

Also, I know what I am waiting for -- the new Harry Potter part of Universal's second park!!

nmf #7 said...

My thoughts and love are with you as well- thank you for being such an inspiration to me...

Val said...

Sending positive thoughts and prayers your way. I am David's sister and found out about your blog thru his.

hadassahsabo said...

oh RivkA - my heart is so heavy with this news. i know there are no words i can say that will make this news any easier to bear. just know that you continue to be in my daily prayers.

Keep fighting the good fight - your positive sunshiney attitude helps not just you but everyone around you.

surrounding you with love and hugs.

Hadassah

KosherAcademic said...

RivkA, we will daaven for you. I'm so sorry that you have to go through this pain.

Mottel said...

Wishing you only revealed and open goodness in your life . . . And holding you deeply in my prayers.
Its amazing how the internet brings is all together . . . I hope we come together again in the near future for good news!

Anonymous said...

Refuah Shelaima to you, you will be in my thoughts and prayers.

Anonymous said...

may you have a refuah sheleima

frumhouse said...

Refuah shleimah to you. How wonderful to have all these friends and family behind you. How amazing that Hashem brought this to your attention before it was too late. That must mean something good.

eem said...

You are in my thoughts and prayers for a refuah sheleima. May you have lots of strength!

Anonymous said...

u will get through this. i will pray 4 u. stay strong.

come running said...

Refuah Shelaimah. I am davening for you and your family.

RivkA with a capital A said...

Come running -- I tried to visit your blogs and discovered that I need to be invited.... wanna' invite me?

Karin said...

I'm sending prayers your way.....

Spruce Hill said...

I am so sorry! Sending lots of hugs and prayers your way!

Jen said...

Hey Rivka, just catching up. I need to stop by more often! I'm so sorry to hear about this new dx. You are so strong and brave and have handled this all with such strength and dignity! You are in my prayers! Stay Hopeful!