Quilt and hair story

Double Whammy · May 2012

I was out and about with a friend (endometrial cancer survivor) this morning. One of our stops was a quilt store. So there we were, having fabrics cut by a woman wearing a pink ribbon. And yes, she was a bc survivor - and I must tell you all that she is a 4-year survivor of Stage III bc. Yahooie!

She has lymphedema and showed me her compression sleeve. My friend has lymphedema in one leg from her pelvic lymph node removal due to endometrial cancer/pelvic lymph node removal surgery. They commiserate. I add that I have leg lymphedema, too. Another customer joins the lymphedema conversation. She has leg lymphedema because she had lymph nodes removed because of melanoma (she's a 16 year survivor). So we all compare ankles, legs, and arm stories.

Somewhere in the course of conversation, the subject of hair loss comes up. This woman has the same permanent loss of hair that I do! She's the first woman I've met in person. And her hair loss is identical to mine. Is this something to celebrate? No, but it was really validating. I'm not nuts and not so special. We are both convinced that this is the result of Taxotere. Why the heck don't oncologists tell women about this? Are they afraid we'll refuse chemo? I guess this is a possibility, but I was never warned that hair loss could be permanent. They all act really suprised. It is not uncommon, doggone it!

The woman in the quilt store wears a human hair hairpiece that has been made to fit her head and is "glued" in place. This allows her to style it, wash it, etc. It is removed montly, scalp conditioned and reapplied. Expensive, but interesting. I'm ok with wigs and hats.

This was a very interesting adventure today needlesstosay. Of the women in the store at the time (6), 4 of us were cancer survivors (66%), 2 of us (50%) breast cancer, 2 (50%) endometrial cancer (I get to count me twice), and 1 (25%) melanoma. All of us (100%) have some lymphedema. 2 of us (50%) had permanent hair loss from chemotherapy. All of us (100%) were glad to be alive in spite of it all.

Suzanne

Gabe N Abby Mom · May 2012

I've always known you're not
I've always known you're not nuts...it sounds like quite a day!

Hugs,

Linda

Frankie Shannon · May 2012

Isn't it comforting to know
Isn't it comforting to know that there are other pink sisters that have what we have and can compare notes,i think it was nice for you to meet some when you where out shopping,it's a smaller word than we think.
Hugs Frankie

grams2jc · May 2012

Isn't it amazing
We sometimes get messages in the strangest places. What a cool experience!

Jennifer

ksf56 · May 2012

Wow!
Your story shows that there are no coincidences! You were supposed to all be there at that time. What a gift you received when you met up with all these survivors! It just showed you that you're not alone on this cancer journey. And people do conquer their diseases and live a new normal life. I'm so glad you got to meet these ladies! They are alot out there.

Hugs to you!
Karen

tufi000 · May 2012

Breath of fresh air!
What a unique and fascinating encounter!

Bella Luna · May 2012

Amazing
What an amazing story and coincidence to run into not one, two but three other women who share your experience with cancer. How great to have this chance encounter with other Survivors. Glad it lifted your spirits.

missrenee · May 2012

Bella Luna said:
Amazing
What an amazing story and coincidence to run into not one, two but three other women who share your experience with cancer. How great to have this chance encounter with other Survivors. Glad it lifted your spirits.

Suzanne your story really resonated with me
I think we all need reassurance that we are not "nuts" or being "wimps" when some of these unusual side effects come up. For me, the worst thing is when a doctor says "hmmm--I've never seen that before" when you know darn good and well you've heard about it right here on this board. Just the reassurance that s**t happens and while it may not be usual, it's not impossible--really makes me feel much more at ease with the situation.

We have all learned how varied and diverse the side effects of this miserable beast and it's treatments can be. It just helps to know once in a while that you're not alone in any of them.

Sounds like you had a great day out!

Hugs, Renee

SIROD · May 2012

Side Effects
Hi Suzanne,

I don't think oncologist know all the side effects of drugs they recommend. I believe they know just the common ones that most people experience. They prescribe probably so many, many different kinds of drugs, that remembering all the side effects from them would be impossible.

I read another post yesterday about Taxotere causing permanent tear duct blockage. I have read about tear duct blockage happening on other boards due to side effects of Taxol and Taxotere.

My oncologist recommend in March that I begin chemotherapy. I haven't had chemo since 94/95 as I am highly ER+ and have used hormonal therapies now for over 17 years. My cancer more than likely is no longer responding to hormonal therapies. I beg to have one last try with Faslodex. One chemo that was recommended was Taxol. However, I had a DCR (surgery for a new tear duct) for a block lacrimal sac infection with blockage (stone) prior to my ct scan which told me it's back in the lungs & lining in 2008. I had postpone the ct scan due to the acute infection. Now if I had not read about Taxol and Taxotere side effect of block ducts, I might have considered it. No way will I use those drugs now knowing the side effects.

This is why boards like these are so very important.

Here is another post on another forum complaining about permanent hair loss:

http://community.breastcancer.org/forum/69/topic/759662

and if you Google "permanent hair loss Taxotere" you will find many posts on this topic along with your own.

Glad that you found someone in real life that you were able to talk to about a mutual problem.

Best,

Doris

Double Whammy · May 2012

SIROD said:
Side Effects
Hi Suzanne,

I don't think oncologist know all the side effects of drugs they recommend. I believe they know just the common ones that most people experience. They prescribe probably so many, many different kinds of drugs, that remembering all the side effects from them would be impossible.

I read another post yesterday about Taxotere causing permanent tear duct blockage. I have read about tear duct blockage happening on other boards due to side effects of Taxol and Taxotere.

My oncologist recommend in March that I begin chemotherapy. I haven't had chemo since 94/95 as I am highly ER+ and have used hormonal therapies now for over 17 years. My cancer more than likely is no longer responding to hormonal therapies. I beg to have one last try with Faslodex. One chemo that was recommended was Taxol. However, I had a DCR (surgery for a new tear duct) for a block lacrimal sac infection with blockage (stone) prior to my ct scan which told me it's back in the lungs & lining in 2008. I had postpone the ct scan due to the acute infection. Now if I had not read about Taxol and Taxotere side effect of block ducts, I might have considered it. No way will I use those drugs now knowing the side effects.

This is why boards like these are so very important.

Here is another post on another forum complaining about permanent hair loss:

http://community.breastcancer.org/forum/69/topic/759662

and if you Google "permanent hair loss Taxotere" you will find many posts on this topic along with your own.

Glad that you found someone in real life that you were able to talk to about a mutual problem.

Best,

Doris

The rest of the story
I want to share the rest of my quilt/cancer story. One reason my friend and I were in the quilt store is because we're working on a very special project together. Our friend has the ugly kind of endometrial cancer and is not doing well. Since her dx less than a year ago, the cells have laughed at everything they've thrown at it. Her son is getting married in September. In January (the last day she felt good) we three were together shopping for fabrics for a quilt for her son's wedding gift. Unfortunately, she's had way too many medical issues to get started on it. So friend #2 and I are putting it together for her. We're so honored that she is letting us do it. It has been a true labor of love from the getgo. She carefully and lovingly chose the fabrics, and every stitch we sew for her we sew with love and friendship. She will be able to give her son a wedding gift that he will undoubtedly treasure and we got to be part of it.

I'm forever amazed at how many blessings I've received since my diagnosis 2 years ago. Cancer certainly does change our lives, and puts things into perspective, doesn't it?

Suzanne

ksf56 · May 2012

Double Whammy said:
The rest of the story
I want to share the rest of my quilt/cancer story. One reason my friend and I were in the quilt store is because we're working on a very special project together. Our friend has the ugly kind of endometrial cancer and is not doing well. Since her dx less than a year ago, the cells have laughed at everything they've thrown at it. Her son is getting married in September. In January (the last day she felt good) we three were together shopping for fabrics for a quilt for her son's wedding gift. Unfortunately, she's had way too many medical issues to get started on it. So friend #2 and I are putting it together for her. We're so honored that she is letting us do it. It has been a true labor of love from the getgo. She carefully and lovingly chose the fabrics, and every stitch we sew for her we sew with love and friendship. She will be able to give her son a wedding gift that he will undoubtedly treasure and we got to be part of it.

I'm forever amazed at how many blessings I've received since my diagnosis 2 years ago. Cancer certainly does change our lives, and puts things into perspective, doesn't it?

Suzanne

Very touching!
Your story brought a tear to my eye. You are such a good and trusted friend! You all are such a blessing for each other! I am touched!

Prayers for all of you!
Karen

survivorbc09 · May 2012

Bella Luna said:
Amazing
What an amazing story and coincidence to run into not one, two but three other women who share your experience with cancer. How great to have this chance encounter with other Survivors. Glad it lifted your spirits.

Thanks for sharing this with
Thanks for sharing this with us.

Hugs, Jan

mamolady · May 2012

Double Whammy said:
The rest of the story
I want to share the rest of my quilt/cancer story. One reason my friend and I were in the quilt store is because we're working on a very special project together. Our friend has the ugly kind of endometrial cancer and is not doing well. Since her dx less than a year ago, the cells have laughed at everything they've thrown at it. Her son is getting married in September. In January (the last day she felt good) we three were together shopping for fabrics for a quilt for her son's wedding gift. Unfortunately, she's had way too many medical issues to get started on it. So friend #2 and I are putting it together for her. We're so honored that she is letting us do it. It has been a true labor of love from the getgo. She carefully and lovingly chose the fabrics, and every stitch we sew for her we sew with love and friendship. She will be able to give her son a wedding gift that he will undoubtedly treasure and we got to be part of it.

I'm forever amazed at how many blessings I've received since my diagnosis 2 years ago. Cancer certainly does change our lives, and puts things into perspective, doesn't it?

Suzanne

Awesome
Suzanne,
That is so wonderful to be a part of. The whole story is really heartwarming. I love that you are making the quilt with your friend. That gluing on the hair is an interesting solution. I would have never thought of that.
I truly believe God puts certain people in our path.

Cindy

debi.18 · May 2012

mamolady said:
Awesome
Suzanne,
That is so wonderful to be a part of. The whole story is really heartwarming. I love that you are making the quilt with your friend. That gluing on the hair is an interesting solution. I would have never thought of that.
I truly believe God puts certain people in our path.

Cindy

Beautiful!
How touching...yep, had to get the tissues. What a wonderful treasure you are!

Hugs, Debi

survivorbc09 · May 2012

grams2jc said:
Isn't it amazing
We sometimes get messages in the strangest places. What a cool experience!

Jennifer

A very cool
A very cool experience!

Hugs, Jan

Frankie Shannon · May 2012

Double Whammy said:
The rest of the story
I want to share the rest of my quilt/cancer story. One reason my friend and I were in the quilt store is because we're working on a very special project together. Our friend has the ugly kind of endometrial cancer and is not doing well. Since her dx less than a year ago, the cells have laughed at everything they've thrown at it. Her son is getting married in September. In January (the last day she felt good) we three were together shopping for fabrics for a quilt for her son's wedding gift. Unfortunately, she's had way too many medical issues to get started on it. So friend #2 and I are putting it together for her. We're so honored that she is letting us do it. It has been a true labor of love from the getgo. She carefully and lovingly chose the fabrics, and every stitch we sew for her we sew with love and friendship. She will be able to give her son a wedding gift that he will undoubtedly treasure and we got to be part of it.

I'm forever amazed at how many blessings I've received since my diagnosis 2 years ago. Cancer certainly does change our lives, and puts things into perspective, doesn't it?

Suzanne

You two ladies are
You two ladies are definitely what true friends are.What a great comfort for her.I hope she's feeling good for her son's wedding.
Hugs Frankie

Quilt and hair story

Comments

Discussion Boards