Calling all TNs
Comments
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Did you guys know that Kristamoonbc finally decided to do chemo? I saw her on youtube. I was so relieved for her when I saw that. She looks great! Good luck Kristamoon!!!
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Babs- I'm glad to hear that. I felt she was making a VERY big mistake not to.
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Just a quick check in! I have been doing better emotionally, thanks to my therapist and being proactive with my diet, and I'm ready to jump back in to "I can beat this mode!". I've "reframed" my situation, so I am now looking at it as an opportunity to take a second swing at this beast armed with the knowledge that my first attempt didn't quite hit the mark.
Babs - I'm glad to hear Kristamoon decided on chemo. I was worried for her and her family. I hope all goes well.
Becca - have you and your team decided on a course of action? I've been thinking about you!
Has anyone heard from Lovelyface? I hope she is well.
Back to life!0 -
Has any one noticed BCO is a bit different? Usually when I log on I go to favs and it takes me to the next post after the last one I read. Now it takes me to the top of the current page and I have to scroll down through posts and actually decide where I need to start reading? I don't know if it is my computer or something at BCO.
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gillyone- It's not your computer, it does the same here.
Suze35- So happy that you put your boxing gloves back on!!!
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Its been awhile since I have been here and a long time since I have posted so Hello to all, and a welcome to all the newbies, glad you are here but sorry you had to join us.
I have a question for all of you who have had your port removed. I had my port removed about 2 1/2 weeks ago and about a week following the removal there is a relatively large lump under the scar which does not feel like scar tissue. Do any of you have a lump under your scar where the port was.
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Hi Beetle! I had my port out due to infection-so it was not closed up, but healed from the inside out so it it still a bit concave. While I do not feel a lump, I had a CT scan because of arm and shoulder pain (on the port side). The CT showed significant scar tissue that is restricting the blood flow to my arm. Now I am waiting on an ultrasound to better identify how to fix this. What I'm saying is it could very well be scar tissue, but never assume anything, Please have it checked out!
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gillyone: Not just you.. mine started about a week or so ago, maybe a little less. It's very frustrating and I several other people are having the same issue. I think they changed something with the system. I'm hoping they get it fixed soon, because it really puts a damper on me keeping up with certain threads.0
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On hair (Kymn) - I'm right there with you girl, or a step ahead I guess. Mine started coming out Monday. Yesterday was the first day I kept my head covered all day. So far, it's not too bad because I'm a writer/journalist and work from home, running my own biz, so no one sees me all day except my neighbors when I put my kids on & off the school bus.
Like you I also had long hair (see the pic) that was me until March 11, when I had my stylist cut it super short pixie style. I was just learning to love the look and convenience of that style until Monday. I have a lot of hair but its fine, so I'm surprised at how much is coming out and that I have no real bald spots yet. I've asked DH two nights in a row to help me buzz off the rest and he is a chicken, he keeps saying let's wait/it doesn't look that bad. But my scalp itches and hurts and I know I'm prolonging the inevitable.
I've had a lot of crazy hairstyles over the years. In our life before kids, DH & I were musicians, signed to a label, went on tour, the whole deal. My hair was very short & wild and then it was long and wild. Even today, years after that life gave way to a businesswoman/stay-at-home life, it remains a huge part of my identity. I have cried about 10 times in the last 3 days about it. I even said out loud when it really started coming out, "please come back." I'm scared because I'm on taxotere and there's a thread here about how some ppl never regrow hair on this drug. I actually think I'm as scared about that as the cancer coming back, even though I'd choose life & health over hair any day.
Wise women here have said it is this loss that makes it real, visible. And that is true - not only to me, but to my two daughters. They're young, but not babies, so they associate hair with femininity. They're afraid people will stare, whisper, make fun of me. They now see me as sick, even though they've known about the bc since before Christmas. This is not making the hair loss any easier. I can be nonchalant and brave when talking to them about it, but I cry in the bathroom. I run from the mirror.
I made an appt. to see a wig specialist next week, after I've recovered from my next chemo (which is tomorrow, ugh). I wonder if she has any punk rock-funky-Gaga wigs lying around. I'm thinking about a Bettie Page wig!
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Suze35-Glad you are doing better.
I asked the BS about the possibility of having more chemo yesterday. She is deferring to whatever the MO recommends and I will not be seeing her until next Monday. I did get the last 2 drains removed yesterday.(YAY!) And I will be having annother fill on Friday. I sent the DH back to work today, and was able to do a couple of errands on my own.
Gillyone- It is a BCO situation. It seems to have started the end of last week, I do hope it gets fixed soon.
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Hi all I hope everyone is ok. I have to respond to the hair question. My hair fell out like everyone else's did and around the same time. I was thrilled when it started to grow back, because I too had Taxotere and read the posts. However, it has grown to about 1 1/2 inches and I had the bottom at the back trimmed and neatened up around the sides, but it has stopped growing and still looks like an 80 year olds home perm. gone bad...... very fuzzy. Anyone else have this ??
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suze - glad you are feeling better!
kelben - my hair is about 1 - 1 1/2 inches right now. Lately it seems like it is not growing as fast, but it is hard to tell if that is just perception as the longer it gets the less dramatic small growth will seem. I also have not been good about taking my hair growth supplements. Need to get back on that.
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thanks Irr, it is hard to measure the length because it is so curly too. I am glad I have hair and if you are dealt lemons make lemonade ... right?
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Kym/Michelle - the hair thing is tough, I can't sugar coat it, but I wanted to send ((Hugs)). If you haven't already looked into or heard about Look Good/Feel Better - please do. It's a non-profit organization that gives you a make-up lesson (tricks to help you with the eyebrows and lashes)and they also show you how to work the scarves - the makeup they give you is donated from every cosmetic company you can think of from Almay - Chanel.....They give you lots of everything. Most cancer centers will have information or classes. Also, Laurie Ericksen w/France Luxe (look online) has a non profit organization in which she will send you one free scarf. All you have to do is send her an email telling her your situation. She will then send you a selection in which to choose from and then you get it - the scarves are beautiful, silk and mine came with swarovski crystals on one of the ends (the online price for what she sent me was $90). I know I have her email address buried in my stuff, if you want it, please let me know.
I think the radiation is starting to relieve some of my pain from the spine mets......now when I take pain medication it works. And........I'm not wincing when I bend, reach, turn or move in anyway. Tomorrow I will get my first Xgeva injection.
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Jenn - glad to hear you are getting some relief. I hope it continues to improve.
I never did that look good/feel good class. If I had known about all the free stuff, I would have!
Kelben - the curls will mask growth, for sure. I have always had naturally curly hair. When I would straighten it, it was several inches longer than when curly. Mine is too short to curl right now, but I think I see the beginnings of it. Some of the cowlicks are out of control .. .lol. It is super thick which I am thrilled about . . . just like before.
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Hello Beetle: I had my port taken out last June, I still have that lump under the scar and it has never felt right at the site where it has been removed.
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Becca - yay to the drains! Those were so annoying, weren't they?
Kelben - my hair is actually coming in straight - no chemo curls for me. But it sure as heck is more grey than I remember! I have the Jaime Lee Curtis look going on. I know that my coming chemo will thin it out and slow it down, so I'm enjoying what I have for now. I'm even forgoing the scarf!
Jen - I am so happy the radiation is providing relief. Chronic pain is so debilitating, and you flat out don't deserve to suffer with that. Good luck with your Xgeva injections, my thoughts are with you.
Kymn and Michelle - I didn't think losing my hair would bother me, and for awhile it didn't. But then my eyebrows went, and I fell apart a bit. Before, my face still looked "healthy," but no eyebrows really sunk it in. We all have those moments, whenever they come. I did the Look Good, Feel Better class, and got some great tips - along with some fabulous makeup - and it really helped.0 -
Suze: Sounds like you are in great shape and ready to go for round two. Of course you will have all of us here cheering you on!!
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Hi all of you wonderful strong caring women,
I've been crazy busy with my landscape design business. Doing installations during the day and designs at night. We've had a bout of warm weather and my clients all get excitied as I do too. It is supposed to get cold again this week-end so I may have a chance to catch my breath. I started radiaition yesterday. I will hopefully have a chance to catch up on all of the posts sometime this week-end. I hope everyone is doing great and please know I am thinking of you all. Missing you too!
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Suze35 - Totally agree about the eyelash/eyebrow thing. I was quite accepting of my hair falling out and I looked great in my wig, but when the lashes/brows go, it's pretty hard to compensate. Eyeliner and heavy rimmed glasses helped for me. But it was at that point, I looked in the mirror and said, yup, you sure look like you got cancer!
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Ladies:
Got my results from genetic testing everything is okay, and today I am 6 months out. Can I breathe a little easier SOMEWHAT...
Hang in there ladies...
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Great news about the genetic testing!! Congrats! Yes I think you can breathe easier...
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Hi ladies, just popping in from work, yep went back to work yesterday thank goodness the chemo hangover is gone for this round.
Jenn I am going to take that class I am signed up for April 20th Im pretty big into my makeup and stuff so not sure if they can teach me lol but hey free stuff Im In
The scarf sounds beautiful does she deliever to Canada?. Glad you are getting some pain relief we sure do appreciate the smallest improvements now dont we.Suze when did your eyebrows and eyelashes go?
To all you other lovely ladies hope you are having a great day full of cancer free thoughts. Have to run as I am at work
Hugs to you all
kymn
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I don't know when Suze lost her eyebrows/lashes, but my eyebrows went *poof* sometime between March 1 to present... and my last chemo was 1/31. They seem to be growing back somewhat, but it really is crappy that it happens for many of us after chemo is done.
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DC trip Reminder: (two weeks away)
Four (4) rooms remain booked for the Weekend Rate at:
Washington Marriott at Metro Center
775 12th Street NW
Washington, District Of Columbia 20005
USA
Phone: 1-202-737-2200
Fax: 1-202-347-5886
HERE'S THE DEAL:
I have requested all rooms be in proximity to each other
2 rooms are being held at the $289 per night rate 1-4 adults allowed NO breakfast allowance
1 rooms is being held at the $309 per night rate 1-4 adults allowed WITH breakfast allowance
So, there is potential for as many as 16 participants but obviously 2 per room would be best IMO (for a total of 8).
Right now we have about 6 interested people. The rooms can be canceled with no charge up until 6 pm April 8th. The rooms are being held under my name.
Here's what you need to do:
PM me when you know your plans. The rooms are being held under my name. I will give you my last name and you can then contact the hotel yourself and take one of the rooms and pay for it.
If I don't have commitment to cover 4 rooms I will cancel whatever is left unclaimed upon my arrival that day with no penalty to me.
Is this clear? The hotel is 1.5 miles from the Tidal Basin where the CBF takes place. It is located by a Metro station. Parking is $34 per day but $45 with a van or SUV. I will probably have my husband drop me off and pick me up to save on ridiculous parking fees since everything is so close and driving in DC is typically a nightmare.
If we need more rooms I can probably get them for awhile (and hopefully in proximity to the ones we already have on hold), but his will change, as they do book up as CBF nears.
I am really excited by this, and I hope you are too! I want to reiterate that anyone not comfortable with these plans has the option of checking out the links I provided earlier and making their own reservations.
See you in April!
Here's who we have thus far:
YES (1) laurajane
YES (2) Sugar77 (bringing sister)
YES (1) HeidiToo (adult kids--- but they are "doing their own thing" in DC)
YES (1) Fighter 34 (day tripper)Remember: I will let any rooms not reserved via above information go the morning of April 8th, so if you plan on staying at this location you need to contact me.
Also, I have a Kwanson Cherry in my back yard that has not flowered yet, so I am hopeful that we may luck out and be able to view the DC blossoms at their peak, as I don't live too far from DC.
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WRT eyebrows, etc. ... yep, they went "Poof" a surprisingly long time after chemo ended but the good news is that they came back almost as quickly!
I remember thinking "Damn, this s*cks" and then just a quickly thinking "Wow, that was fast"
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My eyebrows/lashes went about halfway through taxol, grew back about 2 months after end of chemo.
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My eyebrows went soon after I started Taxol, and I had really thick brows. They are slowly coming back, but still aren't fully in. I'm not sure when my lashes will come back, ugh.
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My eybrows and lashes went about 1/2 way through Taxol and came back after I finished and that was in mid October. I lost my lashes for a second time this past January (no idea why) but they have come back again and it only took them about 2 weeks to come back. Soooo frustrating
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Fighter: Such great news for you! Congratulations!!!
Laurajane: I hope you had a great birthday and I am glad you are getting lots of work and you are having a bit of spring! Always nice to hear from you. Hugs!
Heidi: I am so jealous that I can't come but I am hoping to see many pictures from all of you!!!
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