April 2015 Chemo Crew... Starting in April? Please join us!

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    Sue, When I did not test positive for BRCA gene, my MO looked at my family history, looked at me and said, "you have a genetic susceptibility; just not one we have a test for yet." Since then, my mom had the broader test and she tested positive for a genetic defect of unknown significance in CHEK2 gene. Next MO visit, I do intend to ask if I can try to get the expanded test as well. I think the next 10 years will be huge as far as identifying genetic components to all of thi

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  • gkodad
    gkodad Member Posts: 188
    edited December 2015

    1. Gene testing - my insurance will not pay for it, as it's now immaterial to my treatment. But my doctor has said there is a likely genetic component. However, my sister's insurance won''t pay for her to be tested unless I have a positive genetic test. Right now, her doctor is appealing that decision based on family history.

    2. My understanding is that once breast tissue is removed through a bmx there will never be normal breast sensation. I'm still pretty numb, but hoping for more normal skin sensation over time. I can have reconstruction if I want, but can't imagine that will ever happen.

    3. I have microbead foobs - lightweight, waterproof, relatively inexpensive. Aside from the desire to "squish" them like any microbead-filled object, I think they are great. Of course, don't flush them down your toilet as they are not biodegradable.

    4. I get tightness under my right arm and across my incision, and see a lymphatic massage therapist to help manage it. My doctor says "that happens". Okay.

    5. Cancerversary - When I found it? When it was officially diagnosed? When it was removed? When I finished chemo? Beats me. I think the doctor is counting from official diagnosis which is March 1. So I'm at 9.75 months, but don't have any plans to celebrate any of the above events.

    6. Christmas decorations - this one is a real stumper. normally I collect items for the tree that reflect the year's experiences, but I'm pretty sure I don't want any cancer ornaments on the tree. I am thinking about putting glitter on my power port medic-alert bracelet and hanging it. I'm also thinking about cutting it with scissors and setting fire to it. I just haven't decided yet.

    I hope everyone has a wonderful happy holiday!

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  • Rpayton
    Rpayton Member Posts: 235
    edited December 2015

    Whew catching up on all the reading here. Many of you had or have so many reconstruction choices and decisions. I don't know how you keep it all straight or decide. If I ever need good info you will all be my source. You have shared and i have learned so much. I did not have to go down that path with a lumpectomy. My BS is awesome and I thank God for her talent.

    I can completely understand the not wanting to advertise breast cancer and wear anything. I get it!

    Kbeee I also have collected an ornament from each trip we have taken over the years. We don't always take trips each year but love the memories. Love hanging them on the tree. This year I did get a silver pink prayer box ornament from breast cancer site. Inside a tiny prayer for my family. BC is a part of my life forever. It is NOT who I am but a part of my life from this time forward. I am determined to not turn my back on anyone or myself who has been affected. Just my thinking.

    I also do have sweatshirts, earrings that I wear regularly. Not always though and there are days I would like to forget but I'm not one to run from my higher power's plan. I am more determined that my calling to healthcare as a second career at 40 was to prepare me to specialize and now help in cancer.

    We each have to do what is best for our own mental health right?! Live and Love!!! Blessings to all of you this Christmas. There are not enough words to say but simply thank you!!!

    image

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    GKO, I am guessing my insurance will not pay for testing, but I will still try based on extensive family history, especially of GI cancers. I am hoping it could impact screening. Also, since my mom has an unknown variant, they did test for that, but my dad was adopted and has had cancer, so I'd like to know from that perspective too. They'll probably say no, but at least we can ask.

    I plan a New Year's Eve burning of many 2015 items.

    Merry Christmas!

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    People may want to contact Myriad--they used to underwrite a good chunk of the cost for people whose insurance balked.

    Renee, that's a sweet ornament. My wife and I get (at least) a new one each year. This year's is a silver ginkgo leaf.

    Last night I had my first dream in which I looked at my body and saw mastectomy scars rather than breasts. In the dream, I was checking my clothing (I turned out to be wearing the colorful women's swim leggings I got this summer, and a sort of cravat over the middle of my chest. I had a slight feeling of diminution and sad change, but mostly was focused on where my robe had gotten to and how I was going to get out of the opposing government's encampment. Because, N.B., it's just not Christmas without a dystopian narrative dream.


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  • Addie29
    Addie29 Member Posts: 307
    edited December 2015

    2 nights ago I had a dream I had a pet scan and it showed cancer throughout my body. I haven't been able to shake that dream. I've been crying all morning today because I have a spot right by my shoulder blade that's sore and keeps giving me muscle spasms. I'm convinced im dieing. When I first had cancer I dreamt about it a lot so I guess that's why the dream is really bothering me because I'm taking it as a sign. I don't want a scan. Im scared it will show my worst fears and then what?! Chemo again just to maintain the disease and a median urvival of 33 months?! That's not long enough. I want to be here forever to watch my children grow. They need their mommy. God I'm feeling so depressed and defeated over this. Wete I hope everyone else is feeling good and has a good Christmas.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited December 2015

    Love to everyone!

    Ok, Addie, breathe. One more. Go find your Ativan. All of our weird shit has been nothing, yours will be too. Is your MO open? Call and make an appointment. The devil you know is better than the devil you dont. It's fine. You need peace of mind. Your mind is playing with you. I know exactly what you are going through. You are not going to die. Stretch your shoulder. Get your husband to rub it. Take some more Ativan, lol. Or smoke a bowl. Thinking of you, sister!

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  • Addie29
    Addie29 Member Posts: 307
    edited December 2015

    sorry to sound so morbid- but it's all I can think about. 90% of my thoughts are of cancer returning. My MO isn't in today unfortunately. I will deal with it until I see him again on the 12th. None of my symptoms ever last long BUT I am having symptoms and that's what worries me. I know my chest has been though a lot but it's been over 8 months since my mastectomy- does it take that long for muscles to heal? And I think a phone call to my Dr mother in law is in order- I need my mind to rest.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited December 2015

    Scarlett - thanks for the info re Gabapentin. I don't know if it's helping with hot flashes or not because I started taking it at the same time as Tamoxifen. I guess the only way to know would be to go off of it. You don't get dry mouth? I have such cotton mouth at night that I have to get up and drink, which then makes me have to pee, and sometimes I have a hard time getting back to sleep. I try to remember to put something to drink on my bedside table - that cuts down on the sleep disruption. I also have spells of dry mouth during the day, but not as bad since getting a drink is less disruptive.

    I forgot to take my tamoxifen and gabapentin for the first time yesterday. We went to our friends for a Christmas gathering. When I got home, I went directly to bed and I was falling asleep when I remembered my pills. I actually couldn't remember if I had taken them or not. Dry mouth woke me around 1 AM, so I checked my pill case to find I had taken them. Yay. But then this morning realized I had checked the wrong day. Boo. Note to self - don't try to take pills in the middle of the night.

    Addie, I feel for you. I can't imagine the anxiety you must be feeling. I truly wish you peace.

    Ok, back to Christmas eve prep. I have to run out and buy some lottery tickets.

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    Addie, I echo what Jen said. You need to get checked and do not minimize things. Call on the 26th and ask to be seen sooner than the 12th. (((Hugs))). In the meantime do the best you can to be distracted by Christmas activities. Do not let the cancer Grinch steal your Christmas

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  • Addie29
    Addie29 Member Posts: 307
    edited December 2015

    unfortunately no one will be there on Saturday- I go to a clinic for my bc treatment and they are Monday -Friday. But I will send my doctor a message on Monday. I just want to feel normal again- although I know that will never happen.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    Addie- sending you a warm hug. It sucks to be scared and I think emotions running high due to the season makes it worse. I agree you need peace of mind. In the meantime, try to just put the hand up (as in talk to the hand) every time this thought comes in your mind. Tell yourself it was only a dream and you are fine. Repeat it like a mantra. Breathe. And finally, take the Ativan. I'm so sorry this is spoiling your holiday. You are so loved here. You're going to be ok. Hugs.


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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    Addie, I agree--just keep breathing, do contact your doc's office, and try not to get too revved up about the future. I hope you can enjoy your family and hold the light in your heart.

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015
    image

    Birdwatching at sea last week.

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  • AndreaC
    AndreaC Member Posts: 220
    edited December 2015

    Great photo, ksusan!

    Addie...I know how worried you are, but try to relax and have a good Christmas. Enjoy being with your family. Worry after. But do call your MO as soon as you can.

    Merry Christmas to all my fellow survivors. We have been through a lot together this year and I value each one of you.

    Andrea


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  • Rpayton
    Rpayton Member Posts: 235
    edited December 2015

    love that photo KSusan!

    Addie: It is hard with emotions this time of the year. Enjoy the kids and chaos of Christmas. Take back your sanity! It is yours and doesn't belong to cancer thoughts. Ativan until you see the MO. You are loved here and we understand totally. A sarcastic sense of humor those bad dreams. Blame it on too much sugar and rich holiday food.

    Merry Christmas to all! May you find some peace and deep breathing today.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited December 2015

    Merry Christmas to you all - even if you don't celebrate, the wish is for you to have peace. Here are some cookies to enjoy!

    image

    image

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    Beautiful!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited December 2015

    Merry Christmas everyone! Wishing us all health in the coming year. You ladies are a gift, and I'm so thankful I get to know you( although I wish it was under better circumstances) wassail!!!!

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    I am deeply grateful for all of you in March and April Chemo.

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    Merry Christmas ladies! Thanks for your friendship this year! You've all kept me sane... A very big task some days

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    If my MIL doesn't stop yapping about people dying of cancer, I will be forced to pretend I need to take a nap.

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited December 2015

    although I don't post much I just want to tell all you lovely ladies merry Christmas and a much better new year 2015 sucked but 2016 will be much bette

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited December 2015

    Merry Christmas to all who celebrate. We tend to celebrate every single possible holiday, partly because we sport all the religions in our extended family. What a lovely day. Church where the priest gave the kids two panda bear stuffed animals, breakfast at home, Christmas lunch at home, tossing new boomerang in the yard...do you know how skilful one must be?...nap time with my son for 2 solid hours, the other grandparents visit, dinner, Anne of Green Gables, build kids marble tube thing because I more interested in it than they are. And sleep again.

    Addie- let it out, all those anxieties. Let them out, all the cancer recurrence crap that afflicts all of us. But more than anything, believe that you are going to beat this. The mind is a powerful tool. And you are going to eat healthier, exercise, breathe, call on us, and know that we got your back like nobody else you know!!!! Part of this is that you have been through one hell of a year! Trauma is deep. And you are younger than most of us, so the shock is different in many ways. And this time period was really rough for all of us.Addie...you got a lot to fight for. So follow everyone's advice to get things checked out and then tomorrow is the beginning of the best years of your life.

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited December 2015

    and I forgot to say.. thank you, thank you, thank you all for the humor, reason, sanity, reality checks, straight talk, lopsided talk, and encouragement. I gained strength and resolve through these discussions.


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  • SueH58
    SueH58 Member Posts: 632
    edited December 2015

    Addie, I'm so sorry for your anxiety. It can be as devastating as a physical ailment. I'm no Dr but it seems that with your very early detection and aggressive treatments, it's unlikely you have mets at this point. And I don't think bone cancer causes muscle spasms. Most likely a tight muscle and/or pinched nerve. Please try to enjoy the weekend and talk to your Dr on Monday.

    Big hugs to you, Addie!

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    Addie, I know you have had a stressful time lately. It is hard when we read and hear so many horror stories. I am going to tell you a few positive stories about some of my friends, all of them are BRCA positive. Some I knew in high school and others are local.

    Heather just celebrated 20 years cancer free last week. She's had 2 healthy kids since then.

    Denise is 12 years cancer free. She was about a month from getting a hysterectomy when surprise! She was pregnant with child #3. He's healthy and so is she. And so is her mom, who had breast cancer back in the late 1980s

    Noel just celebrated 12 years cancer free this year by running 12 marathons in 12 months. Her sister Ann is 13 years cancer free.
    10 years from now, I plan to be able to tell folks about my friend Addie who has been cancer free for a decade.
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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited December 2015

    Thank you Kbee for the stories! It helps to hear that sooooo much. I love that some of your friends had kids...its so hard this Christmas to see my parents sad that they will never have grand kids....

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  • SueH58
    SueH58 Member Posts: 632
    edited December 2015

    Karen touche' re: Allie, and I agree!!!!

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    I've just made a small donation to BCO to celebrate knowing you March and April 2015 women! Thanks for being in my life!

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