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Afraid and Overwhelmed

Jun 17, 2008 - 6 comments
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overwhelmed

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afraid

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taxol

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chemo



Hi all.  I guess I've never really put my thoughts together about this "journey" since I laid out my story on the day I joined.  Frankly, I'm really having a tough time these days.  I'm half-way through chemotherapy -- just finished A/C, on to Taxol in 3 weeks.  Tomorrow I will meet with the genetic counseling people to get the results of whether or not I am a gene carrier for BRCA1 or BRCA2.  If it's positive, then I am faced with the decision of a prophylactic right mastectomy and oopherectomy as soon as my chemo is finished at the end of September. Or trust that chemo, etc is working on the right breast and I can preserve it and keep an eye on it every 6 months.  Then 5-7 weeks of radiation, then 6 months of "cool down" time for my skin to heal.  Then bilateral DIEP reconstruction.  That means a year from now, I'll probably be humpty-dumpty back together again. This seems interminable.  I am lonely, though I have a lot of support.  I don't know, it just seems no matter how many people I have around, there is still a pit of loneliness that doesn't go away.  Does anyone have any words of wisdom, support, humor?  I want to live a life that is not constantly focused on this damn cancer.  I'm trying.  I really am.  I have my wonderful children, and a supportive husband (and a crummy ex-husband).  My mom has been amazing.  I hate feeling like a burden to people.  I guess the cancer is a burden, not me.  I have a hard time separating that out.  Thank you community of support.  I need it.

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by Greta_L, Jun 17, 2008
I very wise woman once wrote " Focus on each day, and if that is too much, each hour. If that is too much, stick with the next five minutes.  Rest.  Stressful waiting is exhausting and you will care for yourself well if you take time to rest.  Take every opportunity to do kindnesses for yourself -- you deserve it.  Get a manicure.  Go for a walk.   By a new CD. Pamper. "
Oh wait......... that was you.  
Reading your posts, I see a very compassionate woman who gives great advice. I think the loneliness for me was because I felt isolated by the cancer and the way everyone around you seems to focus on the cancer and seemingly forget about the rest of your being.   Cancer does not define us, our behaviors do.   Right now your schedule is defined by all of your treatments and it is hard to fit much else in.  Can you carve out time for a mini-vacation or a day trip?  For me, I love flowers.  When I had a low spot, I took a day trip to botanical gardens in Milwaukee.  It was a wonderful reminder of life.   Head for a park and forget hospitals and waiting rooms for awhile.  Create memories with your kids and something to look forward to besides the treatments.
Have you seen the touring musical Menopause? Take a girlfreind.  That had me laughing so hard I couldn't believe it.  I too have a wonderful supportive husband and a crummy ex-husband.  Blame the cancer on the EX. :)
As I said the loneliness comes from being isolated in the disease and feeling that no one else around you really can understand.  Consider a breast cancer support group.  The American Cancer Society can tell you where one is nearby. I was lucky to find a network of "Survivors" at my job that I could go to with any question or sometimes just to get a hug.  2 gals were going through treatments at roughly the same time as I so we could compare notes.  Of course you did well to find this online support.  
I am a big fan of  "CaringBridge.com"  The site allows you to post journals about your medical journey so your friends and family can see and you don't have keep repeating for everyone.  They post an example journal of a very inspiring woman, Dale Wolf, who unfortunately past away. She was a writer and I read her entire journal.  One highlight I would like to share was her list of TOP 10 BREAST CANCER PERKS

1. Haven’t had to buy myself a meal in almost six years.
2. Provides a convenient excuse to behave badly and get away with it.
3. Get to find out what most people only wonder about: What I look like bald.
4. Tummy tuck included with breast reconstruction. While the rest of my body falls apart, at least I have a flat stomach.
5. Gets me out of doing things that I didn’t want to do in the first place.
6. The “all Krispy Kreme, all the time” diet
7. Never have to take my pants off at doctor’s appointments.
8. You don’t have to look that great in order to hear the words “You look great.”
9. People are really nice to bald women.
10. All I have to do is show up at an event, remain conscious most of the time and people think I’m heroic and courageous.

I can add a few more.  
11. Save a ton of money on shampoo and conditioner and time washing hair.
12. Don't have to shave legs or armpits during chemo.




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by Whatawoman, Jun 17, 2008
I wrote a lovely long message to you and my computer crashed!

I wish I was closer to you to physically support you right now. The lonliness is something I think we all feel inside. However many people we have around us and however many people we interact with when it comes to our pain and fear we are unique and knowing that no one else has ever walked in exactley the same footsteps and travelled the exact same journey means that we feel that lonliness more intensly when we have a hightened state of fear or pain.

You are such an amazing woman -  overflowing with kindness and compassion -  people like you are givers and find it hard to be receivers -  you have to allow others to carry you sometimes-  youc an't always eb the strong one, teh one that props everyone else up.

I am so sorry you are having such a hard time and as I have not walked in your shoes I have no practical advice other than to say surround yourself with things and people who bring you joy and give you reason to keep fighting. Set daily goals and tasks you can do to bring a smile to yourself, could be as simple as writing a journal entry, making a card, writing to a loved one....

You will get through this stage like all the others and you will triumph
Love Helen
xx

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by darcytwin, Jun 17, 2008
i just wanted to add to the by Greta...

13.  you can freak the male sex out at ANY given time by whipping off your wig!

14. bald is not beautiful but it does feel damn good under the showerhead!

15. your skin will never look better...chemo is harsh but lemme tell ya, my skin was flawless!

16. no plaque build up on teeth...just had my 6 mnth check up and it only took 5 min to clean my teeth..holy cow, that is amazing!!!!

you are almost there....just remember that there is light at the end of this crappy tunnel...it will make you stronger, it will make you cry but it will also make you laugh and most importantly it will make you realize whats truely important....

{{{{hugs}}}}  chin up....youre among the elite group!!!

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by Wessy, Jun 17, 2008
Hello!

I wanted to share some of my favorite quotes/sayings with you that I have on my refrigerator. (My husband puts up with me pasting these things all over the place, God Bless him! :) )  When I am down (and I know this is probably a little strange) but I like to watch a totally mindless show (Like Sex in the City re-runs or an OLD movie that has the quintessential mark by mark acting) and just veg out. For the time I am watching the TV, I forget about everything else for awhile. (I don't recommend it for ALL the time but during the really sad, anxious and scary waiting times, it seems to help). Anyway, here are my quotes I personally cherish. Hope they help in some way:

*I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It's when you know you're licked before you begin but you begin anyway and you see it through no matter what. *
-To Kill a Mockingbird

*Courage is fear that has said its prayers.*

*When dealing with the insane, the best method is to pretend to be sane. *

*Nothing is as simple as we hope it will be.*

*The foolish man seeks happiness in the distance, the wise grows it under his feet.*

*Be careful about reading health books. You may die of a misprint* - Mark Twain

-I hope this helped...What it is that helps you or makes you feel better, I hope you get the chance to do it real, real soon!
-Celeste :)

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by Greta_L, Jun 19, 2008
Another advantage to having Breast Cancer and loosing your hair................
My husband and I went on vacation to Branson, Missouri on an off week from Chemo.  We wanted free tickets to one of the bigger shows in town, so we agreed to submit to a timeshare presentation.  We let the salesman talk for about 5 or 10 minutes, then we asked us a question about our long term goals, I lifted my wig and told him I wasn't in a position to make "any" long term commitments.  The guy was speechless and rushed us out of there with our "free" tickets.  I felt a little guilty for pulling the cancer card, but hey it was fun.

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by Greta_L, Jun 19, 2008
At work we call ourselves "The Pink Ribbon Ladies", my cousin who is also a BC survivor calls my her "breast friend".  Either way or what ever you call it........your'e not alone, there are unfortunately a ton of us out there who have gone through similar experiences.   Was it just me that was stunned after I was diagnosed to hear the statistics on how many American woman will get breast cancer?  I had no idea there were all those survivors living and working around me.  
# 17 on the list of  BREAST CANCER PERKS - People admire you for the courage and grace you display in beating this disease!!  

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