My cross to bear (by Stella)

November 4, 2009

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

 Cross-posted to I Can’t Complain Any More Than Usual.


First Cycle: Xeloda & Tykerb (Medical Update)

August 26, 2009

(cross posted from Coffee and Chemo
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The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

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

With love and optimism,
RivkA


Good Wishes program- free headscarf or wrap

August 6, 2009

My friend Lori M. -an IBCer like myself- sent me an email earlier today about a site she found that provides a free headscarf to patients who have or will lose their hair to chemotherapy or other medical means.  They are beautiful!  The website is here:  http://www.franceluxe.com/  and you can type in L3083 in the search to see the It’s A Wrap’s, which according to the CEO Laurie, 95% of patients choose.  I chose a black and white one just now and I can’t wait to get it in my hands.  With her permission, here is the response from CEO Laurie about her program, she posted this on the TNBC foundation already, but is still trying to get the word out and asked me to tell my friends. 

Hello,

I’m very new to the TNBC foundation and am thrilled to have found this resource.  As a tech challenged person, it took me awhile to figure out how to even post a message.  My name is Laurie Erickson and I am the CEO of a fashion accessory company located in Washington State .  A few years ago I launched a program called Good Wishes scarves – a program where my company makes one, free of charge, silk scarf or headwrap for women experiencing hair loss.  This program was borne as a result of an email I received from a loyal customer, Hillary, who bought hair accessories from my company.  She wrote to our customer care address and asked if we had any products for women who are losing or have lost their hair.  I replied no at the time, but offered to make her a scarf at no charge, in a color of her choosing.  When her scarf was completed, we had a staff meeting and had a moment for this terrific woman, silently sending her Good Wishes.  After receiving her scarf, we communicated from time to time and I told Hillary that should she meet anyone along her journey, who might enjoy a Good Wishes scarf to please let me know and I would happily have our factory make one for her – she told me that her Good Wishes scarf had brought her comfort during her chemo sessions.   At a subsequent Chemotherapy session, Hillary met a woman who learned of our fledgling program and requested a scarf – we were so happy to know that our desire to give was becoming a reality. 

 I have really struggled to connect, to give, to share our scarves with women.  It seems so odd to have the ability to give and KNOW the need is out there, but struggle to find the bridge to get that done.  Fortunately, I spoke with Malaak Compton Rock earlier this week and she told me about TNBC – I was so happy when we spoke and I said “you’re my Bridge!” – she was as always just lovely and helpful and I am absolutely optimistic.  My head has been spinning with ideas and so I write to you here to help me spread the word. It’s very simple.  My company works with hundreds of different silks and cottons.  I will give as much as I possibly can to the community of women who are undergoing or experiencing an event where she is losing her hair.  I have two options at this time; a scarf (which can be a bit cumbersome for some) or a headwrap called “It’s a Wrap”.  I will send you one at no charge.  We don’t have these all up on our website yet at www.franceluxe.com, but I can send you swatches or a scan of the available fabrics at this time. 

 If you or someone you know would enjoy either a scarf or an It’s a Wrap – please email me at laurie@franceluxe.com and me and my staff will work to get it done for you.

 In closing, I’ve worked in the fashion accessories industry for over 20 years.  It is an honor and a pleasure to put smiles on faces through sharing our work – I believe in the power of sending good wishes.

 Thank you and I look forward to working together with you to perhaps send some comfort to women from women.

 

 


It’s been a while……

June 4, 2009

4-H 055

It’s been a while since I have posted over here. I feel guilty about it, believe it or not. The fact is that I am doing really well. I am finally feeling great. My anxiety issues are gone do to a change in meds. What a difference it makes! I feel like I have my old body back too (with the exception of the fact that I have implants where my breasts used to be) I have lost a bit of weight and my clothes fit me again 🙂 My hair has a style now and I am feeling good about that. I look like a normal person, no one can tell by looking at me that I am a breast cancer survivor. I am enjoying the warm weather, the weather I missed last year while recovering from my surgeries and going through chemo. I have been lazily sitting in the sun on my porch, sipping a bit of wine in the evenings and enjoying the fact that is my girls last few weeks of school. I have been volunteering at school for things I have not been able to volunteer for. I have slowly been able to clean my house again without feeling sore or nauseated by smells that make me feel sick.

I am sorry I have not been here in a while, But I am glad for the reasons!


When your self esteem takes a hit

April 28, 2009

One of the hardest part of a cancer diagnosis is the physical change in a person. For the most part, I’ve been emotionally ready for each physical difference a treatment or surgery has made to my appearance.

Last November, on the eve of my first chemotherapy treatment, I was fully aware that my hair would fall out within the next two weeks. I had on standby a bunch of hats I had knitted myself and a few head scarves that I had purchased. When the hair began to come out, I took the bull by the horns and shaved the rest of my hair off myself. As it turned out, the scarves looked pretty good on my very round head and my woolly hats came in handy on cold winter nights. I didn’t mind my bald self all that much and had fun with different colored scarves and coordinating make-up. So many people came up to me and would say “you don’t look sick at all.”

Now though I’ve gone through a different transformation. Last week I had surgery to remove all my breast tissue, both sides. Tissue expanders were implanted and will be slowly expanded over the next few weeks to form hopefully a small C cup breast. In the meantime, I’ve gone from a full C to almost nothing. And since I’ve always carried a bit of extra weight in my middle, I’m totally off balance. Add to the fact that my hair is growing back in what looks like a GRAY color and you have the perfect chemistry for bad body image 101.

I’ve literally gone from a curvy, full breasted, long curly haired women to someone I now don’t recognize. I’m looking for that boost I need to bring me back to feeling good about myself again. I may have found it.

While at the doctor’s office yesterday, my father started a conversation with one of the patients in the waiting room. She is a cancer survivor like myself, having been through the same treatments and surgeries as I have and is now ready for the second reconstruction surgery where the tissue expanders are replaced with breast implants. She then blurted out “I can’t wait for the tummy tuck ” and that’s when I found out that for an extra out of pocket fee, the plastic surgeon can perform a tummy tuck during the implant surgery.

All of a sudden I had images of myself, full breasted, flat tummy, chic new silver euro-hairstyle with a stylish wardrobe, all of which I can wear without a bra. My self image went from blah to smokin’ in a matter of seconds.

Next week, during my first expansion session, I will be meeting with my plastic surgeon to check on my post surgical body. I plan to inquire about the tummy tuck. Since I won’t have the second surgery until sometime mid-summer, I’ve got plenty of time to think about whether a tummy tuck is worth the money. Then again, with the worst year of my entire life almost behind me, maybe I owe it to myself to do something that will make me feel like a total woman again.

Cross posted at C is Not For Cookie