July 14, 2009

(cross posted from Coffee and Chemo)

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

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.

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Chemo Day — Chemo Brain

December 16, 2008
(cross posted from Coffee and Chemo)
I would like to say that since I only received a half dose of the Fenurgen (super, duper, antihistamine that completely knocks you out!), I was more alert. But…..
 
That would not be accurate.
 
Once the drip started, I fought to stay awake and alert…..
 
I lost.
 
Again, I am grateful to the two friends (squarepeg613 and NT) who came and took care of me while I slept!
 
After chemo, I came home, intending to sleep more, but my kids needed me for all sorts of things, for which I did not have the patience!
 
I really wanted to go to sleep early.
 
After spending all evening on my kid’s stuff, I was just finishing up some last minute details when I ERASED HALF OF MY SON’S CLASS LIST!
 
I had meant to save the file under a different name but… I FORGOT!!
 
And you can bet your bottom dollar that I am blaming it on “chemo brain” because I would just feel TOO STUPID to admit that I might have done that even without the chemo!!
 
Especially because…..
 
Well…..
 
Uuhhhh….
 
Hmmmm…..
 
OK!
 
I admit it!
 
I have made this same STUPID MISTAKE before!!
 
Now, before you suggest something obvious, like getting the list from someone else, I should explain that I am the one who initiated this class list!
 
I got tired of receiving class lists consisting solely of kids’ names and phone numbers. I mean, how many times can you ask a parent her/his name, before being utterly humiliated by not remembering??
 
So, I put together a comprehensive, computerized list, consisting of:
Child’s First
Child’s Family Name
Child’s Mother’s Name
Child’s Father’s Name
Child’s Home Phone Number
Child’s Mother’s Mobile Phone Number
Child’s Father’s Mobile Phone Number
Child’s Mother’s email
Child’s Father’s email
Child’s birthday
 
Not to mention the various and sundry additional information, like who is willing to accompany the class on class trips, who is on the class parent’s council (va’ad horim), etc.
 
Because we live in Israel, all this information is BOTH in English and Hebrew!!!
 
(If I was really good, I would also have it in French. But when I was in high school, my dad convinced me to learn Spanish instead of French because it is more practical. Not in Israel!)
 
Each year, at the beginning of the school year, I spend significant time and energy updating everyone’s information. You might think this would not be so difficult, after all, how many people move each year? But you cannot imagine how many parents keep changing their phone numbers, and mobile phone numbers, and emails, and second emails, and…
 
You get the picture??
 
It is so much work, that for several years now, the school distributes MY LIST to the teachers.
 
Because no one else is crazy enough to put in all that effort!!!
 
NOW do you understand how stupid I feel??
 
I had the one and only master copy, with all of this year’s corrections and additions!
 
Only after I had erased the file, did I discover that I had never sent it out to all the parents!
 
Apparently, I sent out my daughter’s class list, but not my son’s!
 
So I spent HOURS, when I should have been fast asleep in my bed, searching through old files and old emails, and doing my best to put together the updated list…. AGAIN!!
 
And then, when I was finally all done, I emailed the new list, along with a letter requesting that the parents please review their information again and send me, AGAIN, any updates and/or corrections that I might have missed.
 
So now ALL the parents of the ENTIRE CLASS know just how SCATTERBRAINED I really am!!!
 
I added two new columns:
Child’s Mobile Phone
Child’s Email
 
You think the new requests will fool them into thinking that I am just being REALLY THOROUGH?!?!?!
 

Should I let me child’s teacher know that I am sick?

September 2, 2008

Another “shrink wrap” question and answer from Kids Konnected and Lynnette Wilhardt….

Yes, I think it is very useful information for the teacher to have. Many children will exhibit different emotions during their parent’s illness that may affect their schoolwork.   Some children have difficulty concentrating, some may become tearful, and some may become easily angered and may take that out on their classmates.  It is important for a teacher to understand what the child is experiencing at home as this may impact their behavior.  The information allows a teacher to take it into consideration if they need disciplining or their grades are suffering. 

I chose to tell both my children’s teachers. For my child in elementary school I had a one on one conversation. For my teen/middle schooler at the time I emailed all of her teachers and her school counselor. I feel there are so many issues that middle schooler/high schoolers have to deal with and so many students that the teachers have to deal with that it just gave them a heads up. I also asked them to feel free to email me if they saw any concerns.

I feel that sometimes even after we do not look sick anymore it may still be beneficial to let the teacher know what they have been going through, espcially for our younger ones. My now 8 year old was still showing signs of stress and anxiety last year. The teacher just felt he was immature and not paying attention. I am hoping that he will have a better year and a more understanding teacher!!!

Lynnette Wilhardt and 2 of the youth leaders from our local Kids Konnected group are going to be on the Today Show this Friday, September 5th. They all contributed to the new book:

Love Sick:  Teens Journal about Growing up with a Parent with Cancer

Here is a link from an article in the LA Times on the organization also. As with all non-profits in these tough times – they are in need of support to keep helping children and teens who have parent with or that have passed from cancer. They have groups around the country but need donations to keep them going as well as donations to send kids to camp and to send out Hope the Bear packages.

Please keep them in mind if you are looking for a way to help …..