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Hair Today, Gone Tomorrow

January 7, 2009
(cross posted from Coffee and Chemo)
A week ago, after swimming, I sat in the locker room combing out my hair…. literally.
As I combed, more and more hair came out in the comb.
It took me a few minutes to realize what was happening.
A few weeks ago, I commented to my oncologist that my hair did not seem to be falling out and, perhaps, I would not lose my hair this time either.
“Don’t count on it,” he responded, matter-of-factly.
I still have not figured out what I want to do.
I am reluctant to just “shave it all off,” since I have met women who did not lose their hair with Taxol.
Some women just lose the hair on their heads; others keep the hair on their heads but lose their eyebrows and eyelashes; other women lose both; some women lose ALL their hair (including the hairs on their arms and legs). 
I had always thought that I would be one of those bold women who just shave everything off.  You know, the “get them, before they get you” approach.
If I knew for certain that I would lose it all, then that is what I would do.  But I don’t.
So I am waiting is out.  Holding on to what is left.  And wondering, if it all falls out, will I ever have red hair again….

The Power of Appreciation

December 31, 2008
(cross posted from Coffee and Chemo)
Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a “Certificate of Appreciation.” It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don’t happen on their own in the chemo ward. There is so much that goes on “behind the scenes.” The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. “For what?” she asked. When I told her, she laughed and said, “That’s history; it’s already forgotten.” After all, they have done so much more since then.

“Well, I did not forget,” I answered back, laughing along with her, “For me, it was a big deal.”


Did you say “chemo brain”??

December 16, 2008

Forgot to mention that the previous post was cross posted from Coffee and Chemo

Also forgot to put in a TITLE!!!

I have got to get some sleep!!!

Oh well, fixed it!


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?!?!?!

The Cost of Living

December 13, 2008

(excerpts and adaptations from previous posts  herehere, and here)

So, if there is one thing that I am learning as a cancer patient, it is to recognize that I cannot control everything.

For the past 6 months, my markers have been steadily rising and my pain has been increasing.

After months of tests, scans, deliberations, and sending me for a second opinion, my oncologist has determined that my previous drug combo is no longer working.

Both oncologists recommended continuing treatment with Herceptin and switching to Taxol.

To make life interesting, my health fund denied me further coverage of Herceptin.  Once there has been “progression of disease,” they are no longer required to provide coverage. 

In Israel, Herceptin costs 170,000 NIS per year (approx. $45,000) (At the best of times, Israeli salaries are about 1/4 of American salaries)

I am appealing the decision, but the process could take months.

Meanwhile, God has sent me an angel who is making sure that I continue to receive the Herceptin.  

Several years ago, when I had the opportunity to purchase private insurance covering medications, I decided to forego that added expense. After all, I thought, how expensive can medications be?

Little did I know….


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