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Monday, September 20, 2010

Glow in the Dark (Medical Update)

I am going to start glowing in the dark.

I just started my third radiation treatment to my brain.

Just before my son's Bar Mitzvah, in July 2009, I had a month of whole brain radiation (WBR). The tumors shrank; some disappeared.  Even after 6 months, some of the tumors continued to shrink.

Just before my daughter's Bat Mitzvah, in June 2010, an MRI revealed two new tumors.  I had stereotactic radiosurgery (SRS) on what turned out to be three tumors.  My recent MRI, showed that one tumor shrank, the other is stable. It also showed several new tumors... too many for another SRS. 

The radiologist, who did my intake last Sunday, recommended that we do another round of WBR;  she wanted to wait until this Sunday, so she could consult with the head off radiology, who was in Barcelona for a professional conference.  Moshe and I felt a little nervous about waiting, but we also felt good knowing that the department took the risks of this procedure seriously (particularly since the risks are elevated by repeating the treatment).

We came in on Sunday, and the radiologist was amazing!  She consulted with the dept. head before we even got there, gave us an update (basically, that the head agreed with their earlier decision), invited Moshe to ask the dept. head any questions he still might have, set me up for the simulation, and even for the first treatment!  Things moved much faster than I expected, but I am glad to have started treatment right away, especially after waiting the extra week for the head of the dept. to return.

So, I just finished the third day of radiation.  I will receive 18 treatments altogether.

This has impeded a bit on our holiday plans.

We, more specifically "I," will have to be in Jerusalem every morning, including Erev Chag, Erev Shabbat, and Chol HaMo'ed.

I have been having a tough time with this whole thing.  I am a bit devastated to have more tumors appear so quickly.

Quite honestly, I am scared.

I am trying to keep my chin up, but it is a challenge.  I just do not feel like saying "I am fine" when I am not, and I do not feel like explaining why I do not feel fine.

My emotions are extremely close to the surface these days.  I lose my temper more than I cry, but it would probably be healthier for me to cry a bit more.  I am feeling just a tad sorry for myself these days.

I have not even mentioned the hair thing....

Meanwhile, I am chugging along.  I even taught swimming today (and had great classes, if I do say so myself!)

I just wish I had a bit more energy, and I know that the WBR will knock me out and make me even more tired than I already am.

*sigh*

So, those of you who want to make a chemo or radiation date with me --now is the time!

(I was just kidding about the glowing part....)



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

With love and optimism,
RivkA

25 comments:

mikimi said...

I'll FB you my numbers and as I do not have a steady job, no hubby and my DD is married I might have more availability than others.
I am up late and sleep with my mobile in bed with me. I don;t always tun my computer on until late afternoon.
Hoping to hear from you!

Nicole said...

Sorry, I am doing treatments in TA, otherwise I would have loved to meet you there. Thinking good thoughts for you, and hoping the WBR works well for you and that you have the least possible side effects.

Anonymous said...

Wish I could drive you or hold your hand through this. As it is, your name was mentioned from the bimah in Toronto on Yom Kippur. I hope the zechut of your many online "friendships" around the world helps carry you through...

Jennifer in MamaLand said...

Oops - that was me; forgot my name.

Batya said...

You're totally amazing. refuah shleimah

I may be available for a "date," not erev chag. email

rutimizrachi said...

By me, you already glow; so "in the dark" will just help me to find you more easily as my eyes fail, and this ol' world gets darker...

The only upsides I can see are: fewer "bad hair days"; more time for a holy Jew in the Holy City; no need to apologize for feeling crappy. Other than that, I am sorry you have to carry this for the world. Maybe this is the year we will get our acts together -- forgive each other for our pettinesses; stop our small theiveries; add light to the world, instead of enhancing the darkness -- so that you and others like you can have a full recovery, and we can have world peace.

I love you. I am scared with you. I want you to be well.

MommaMindy said...

I am so sorry to hear about the new tumors. I appreciate your honesty even when things aren't the best. And, when you don't feel fine, you don't have to say so! You have to live with this reality, others can hear about it. I'm praying for you, your treatment and your precious family. If you don't feel strong, cling to someone who is.

Anonymous said...

Just so you know, there is someone in France, new to Judaism, who found you and your blog by accident and hopes that getting a comment, filled with hope and healing, will somehow ease your struggle as you continue fighting this fight. May you find little moments of happiness and hope each day, despite "scary" treatments, bad news and other unpleasantness. Peace and joy being sent your way.

michele said...

I'm sorry you have to go through radiation yet again. I hope the side effects are minimal and the results stellar.

Anonymous said...

So sorry you are having to go through this. Stay strong and know we are thinking and praying for you every day.

uberimma said...

I'm free chol ha'moed! Just emailed you.

Rahel said...

I just started a new job, so I'm not free on weekdays, but I should be free most Fridays.

Shira Salamone said...

I hope that this round of radiation will bring you closer to glowing with good health.

Karen said...

Awww, I thought you were going to glow in the dark! My kids would love it - all I would have to say is Rivka, you know, the one you can see in the dark? Isn't that better than Rivka, the one with cancer? Come on, you'd be the most popular mom in school. :)

Jeffrey Woolf said...

RivkA,

All I can tell you is that I you inspire everyone who comes into contact with you with both your frankness and optimism.

I think of you every day (3x a day, actually).

May HKBH send you a Refuah Shleimah, a Hag Sameach and a Gmar Tov.
JRW

Anonymous said...

Rivka,
Thinking of you over the chag and sending you happy, healing thoughts....
A reader

perlsand said...

Hi Rivka, We don't know each other but I've been reading your blog for a while.I admire your optimism and honesty.

I wish you a refuah shleima and pray that this next hurdle will be overcome as well.

With healing thoughts,
Perlsand

Susan Tipton said...

Sometimes we just feel what we feel. It's not good or bad it just is.

You seem to always be able to move on. I doubt you realize how many people read your words- even on your hard days- and are encouraged.

Thanks and Blessings.

Alli said...

RivkA my dear you just keep glowing!! Since I began reading your blog I have read of a lovely strong woman who does things 100%.
I have been feeling quite down recently because of severe joint & bone pain. I saw the Oncology Social Worker. I get this guilt complex because I tend to go into these pity parties feeling badly for myself. She expressly said "You don't owe anyone a reason or explaination on how you feel or why you are feeling this way." Those who don't get it? Well so what!! You have many many people in your corner that do care myself included. I am praying for you dear lady!! Your friend Alli in Canada.....XXX

Anonymous said...

My wife died 7 years ago.I think of her all the time. She was a well known, much loved commercial photographer.When she was diagnosed we had the choice to do whatever we please, travel, change locations; there were no money problems and we were empty nesters.She chose to continue her work which she loved, and did so until two weeks before her death. She wore a sheitel, hired pretty girls as assistants and managed to charm and help her clients and subjects until the end.No one knew, so artful was her deception.

When the end was near, she was delerious but still upbeat. She yelled out to my daughter "Call Hashem immediately. Tell him I'm coming, and ask if he needs a decorator, or maybe a personal shopper or stylist. Also ask how far is it to the nearest Ikea?"

Your blog is so enormously courageous. Love asnd optimism means everything.They have the power to heal.I know this.You will be in my tefilot.May Hashem Yisbarach bring you a refuah sheleimah. ej

Batya said...

worrying about you
רפואה שלמה

Gila said...

Hey RivkA,

Was great seeing you last night--I am still amazed/ humbled/ thrilled that you were able to make it.

Lots of love

Anonymous said...

RivkA, Very sorry that you are not feeling well. Thinking of you and sending you lots of positive energy for a refua shlema.

Caitlin said...

best of luck. as a 24 year old halfway through chemo for breast cancer (yup, it can happen at any age!), it's inspiring to see women continuing to live their lives. it flies in the face of those who try to tell me over and over again that 'normal' can't be a part of my life again.

if you've got the time and inclination, you're welcome to visit my blog as well - caitlinhascancer.blogspot.com

Anonymous said...

Refuah Shlemah Positive RivkAH. Sending love, Chaya and all of the Valiers