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myjourney
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Topic: Crazy swollen everything Posted: Jan 16 2009 at 8:23pm |
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Just an update..
I have gained a whopping 8 pounds in just 5 days. My little body is not so little anymore. I am still taking on water, they don't know why. My new eccho I just had on Thurs. shows a bit more water, though its hard to tell exactly how much. My legs are so swollen I can barely walk and they have a slight burn. I am so pissed off!! I have been done w/ chemo for over two weeks now and I just want to start feeling better.
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33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Nancy
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Location: Altoona, PA
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Posted: Jan 17 2009 at 9:12am |
Heather,
I may be way out of line here, but....and excuse my French...what the hell are they waiting for? Are you on a diuretic? Are you seeing a cardiologist? Have they brought in specialists? How can you possibly start to feel better when the fluid continues to build up around your heart?
I know that you feel you have good doctors, but I would be demanding to see someone else, or I would be going to another hospital. This is not right! To gain 8 pounds in 5 days is not normal sweetie, and it is time they did something. I have never heard of anyone continuing to take on fluid and nothing being done to take care of that problem.
Get another opinion Heather.
Much love and many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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krisa
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Posted: Jan 17 2009 at 9:15am |
heather has chosen to wait until monday because she signed up for a class 3 months ago. dear heather, the class can wait, you shouldn't. get thee to a doctor!
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myjourney
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Posted: Jan 17 2009 at 10:02am |
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Its Saturday. My Onc doesn't work today. There is another on call. At this point, I don't want to get another doctor involved, everyone has a different opinion. My Onc had me originally on Indocin, my cardiologist had me on that. My body is too fragile right now, and it made me horrendously ill. They switched me to cylebrex? and it too made me sick. So...I am going to get dandelion tea this afternoon, and drink that. I've done research, and Taxotere does cause this huge weight gain, and it does happen. But it happens while on it. I've been done for two weeks, and I'm still taking on water. I agree, I am pissed off and sad.
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33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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cg---
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Posted: Jan 17 2009 at 10:22am |
Dear Heather,
Indocin is an anti-inflammatory, Celebrex is an anti-inflammatory, Advil is an anti-inflammatory.
They are all very hard on your stomach and I would have hoped you were on Prilosec, Prevacid, or one of the proton pump inhibitors to protect your stomach.
While they are prescribed for your initial condition - in some people they have other effects that compound the problem. Anti-inflammatories are KNOWN for causing fluid retention...my nylons definitely don't bag at the knees or ankles - because my legs get swollen with the fluid retention.
You have not mentioned how your kidney function is! When you are dealing with fluid/heart/anti-inflammatories - the kidneys are an organ that must be visited BECAUSE anti-inflammatories are also not kidney friendly!
Please ask that your kidney function is checked because your whole body is in fluid overload - and there is a delicate balance between stressing your organs and electrolyte abnormalities.
Make sure you get your potassium levels checked before embarking on too much dandelion tea - because while it is good for some things - throwing your potassium level out of kilter will add the problems with fluid balance, heart and kidney function.
You need medical attention Heather...maybe a fresh set of eyes will give you other options. Keep an open mind because obviously what they are doing now is not working.
With love and concern,
Connie
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Nancy
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Posted: Jan 17 2009 at 10:30am |
Heathere,
What do you mean your onc doesn't work today? The good ones take calls 24/7 Heather. What are the opinions of the other docs? Look, I am really worried about you, and I am not giving you medical advice Heather, but someone is not doing their job taking care of you. I don't give a rats behind as to the so called credibility of any doctor....when they allow this to continue and you are so sick.
Both Indocin and Celebrex are for inflammation from arthritis. Why did they have you on these meds?
Taxotere...yes it says fluid retention...but it also says to notify your doc immediately....which you have...this can be life threatening...and they usually give dexamethasone. Did they give that to you?
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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krisa
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Posted: Jan 17 2009 at 2:35pm |
Heather, I hope you went back to the hospital..have you revisited having the fluid aspirated? I know it doesn't sound like fun, but thousands of people have that done and get relief.
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myjourney
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Posted: Jan 17 2009 at 3:19pm |
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Update..
Okay, I called Kaplan (my Onc.) I can barely walk because I'm so swollen. I am now sitting in the ER waiting to see the onc.. Rinn (another Onc) whose on call and some cardio. that is on call for Dr. lewis (my cardiologist) this weekend are supposedly going to meet me here. Kaplan said he doens't want to give me a diruretic because he's not sure if my heart can handle it. So, he wants me to get checked out and they need to decide what to do. I am scared because i don't know these doc's. My jack ass, husband has dinner plans tonight and didn't offer to come with me. I can't stand him right now. Perfect example of how selfish he is and has been through this. I wish I could rant and rave about this on my blog, but his family reads it so I can't.
H
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33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Nancy
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Location: Altoona, PA
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Posted: Jan 17 2009 at 3:45pm |
Heather,,
I was just going to email you. I am so glad that you are at the hospital. You have to demand that they do something for you tonight! I know you are scared sweetie, but this is a hospital....and if they know what they are doing....then they should be able to help you.
Selfish is not the word for D. I have much stronger wording than that...you do not want to hear what I am thinking right now. Just think of only you sweetie..only you. How did you get to the ER? Hopefully someone took you?
Love
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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myjourney
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Posted: Jan 17 2009 at 3:52pm |
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No, I drove myself.
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33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Nancy
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Posted: Jan 17 2009 at 4:03pm |
Heather,
WHAT????? WHY???
ISN'T THERE SOMEONE TO CALL AND SIT WITH YOU? TO TAKE YOU HOME? NONE OF YOUR FAMILY IS THERE IN SEATTLE? I AM ASTOUNDED THAT YOU ARE ALONE SWEETIE.
TELL THE DOCTORES TO CALL D!!!!!!!!!!!!!!!!!!! HE CAN EAT LATER!!!
LOVE,
NANCY
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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NancyJane
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Location: Key Largo, FL
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Posted: Jan 18 2009 at 2:16am |
Heather:
Just wanted you to know that your sisters here at TNBC love you and want the best care possible for you. I am so glad you went to the hospital. You must continue to fight and be your own advocate.
I am sooo sorry you had to go alone to the hospital  !!
Sending you lots of love and light from sunny Key Largo.....
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41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Freedom Dancer
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Posted: Jan 18 2009 at 2:42am |
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Heather, please keep us posted on how you make out! Ladies, thank you for all your wonderful encouragement to Heather at this time.
Heather, you are worth it, never doubt that, don't look to those that steal your value from you, go forward girl and know nothing is too small to pay attention to.
You are special, may God lead others to you that will stand in the gap and support you; do not be afraid to ask! You just might be surprised to see who is in the wings!
Bless you Heather,
Marlene from Canada
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Dx Oct 29/08
Lumpectomy,Stage 1 Grade 3, margins & node clear
Chemo dose dense Jan 8/09
4 x AC & 4 x T
clinical trial - Partial Breast Radiation 2 x a day for 5 days, followed for 10 yrs.
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krisa
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Posted: Jan 18 2009 at 6:26am |
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heather wrote on her blog ..she probably will have the tap/aspiration to get rid of the fluid around her heart, then her heart should be able to pump more efficiently to rid her body of the extra fluid. i will copy and paste her blog.
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krisa
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Posted: Jan 18 2009 at 6:29am |
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from heather:
Okay. For all you mom's out there. I am back in room 705, at Swedish. I
got in touch with my Onc and he had me check myself into the ER. He
said that the cardiologist and the on-call Onc would meet me here. One
of the messages of this post is that miscommunication happens, and you
must be on your tippee toes to be your own advocate, constantly.
Because ER doc wanted to give me, himself, alone the diuretic..Which 4
doc's have been debating for an entire week. The reason being is
this..Hold on it gets deep... Okay. Here's the deal. There are two
water problems in my body right now and they are related. One being
that my whole body is swollen with fluid. The way a body typically gets
rid of this fluid is that it gets into your blood vessels and gets
pumped through, by your heart, and eventually your kidneys piss it out.
Here comes the second water problem. Which is there is a pocket of
water around my hear that is squeezing it. Which makes my heart beat as
fast as it would if I was running. Which is insane. So..its working
hard enough doing its thing, (very healthfully i will ad) but it can't
handle anything more. Like getting rid of my the water in my body.
Which has caused a literal backup in my body. Its a vicious cycle. So
the problem with diuretics is two things. THe first thing is that it
works on the first fluid problem, the fluid in my legs and everywhere
else. Not the fluid around my heart in lungs, which by the way is worse
now than last week, says the x-rays and another eccho tonight. The
second problem with diuretics is that it lowers the amount of water in
my vessels which means that squeezing around my heart would be allowed
to squeeze my heart even more. Which would cause low blood pressure.
And this would be dangerous. So...they have now decided to do the
heart tap, so that hopefully the vicious back-up problem can be fixed.
I of coarse have feelings about this. But that is tomorrow or the next
day.
My friend Tamara came and met me at the ER because I was
very scared and sad and scared some more. I will write more later. I
don't know how this is all going to work out. I am sure I won't die
from getting my heart punctured. But just in case, I want to let those
of you that know me, know that I love you all. And I have lived a
wonder-filled life. And I do not regret anything. I have LIVED! I am
just saying this, not to be melodramatic, but because often people hide
and don't share how they really feel. So there you go!
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krisa
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Posted: Jan 18 2009 at 6:30am |
from her friend tamara: Hello all! Tamara here. Just posting this comment so you know...I
left the hospital at mindnight and Heather was doing fine. She was
getting her port-o-cath thingy accessed because they'll need to get
blood at 4am, so doing the cath thing now is better. She and I dined on
some marvelous hospital food (BLEAH) just in time to make the
no-food-after-midnight deadline. The cardiologist is due to show up and
talk to Heather at 7am. So she'll know more after that. She looks
great and we had some good giggles and chats. Also, her blood counts
are way up (that's good news, btw) and so that is exciting...it's part
of the recovery from the chemo. Also we met another marvelous
onc...I don't remember her name. She came by and explained all the
stuff going on with Heather's bod, and made heather feel better about
going in tonite. I personally am thrilled she went in, because it means
she HAS to take it easy and do nothing, which is good for her heart
right now. But of course it's no fun at all to be there. The ER is full
of sick people and it's very anonymous and scary and bare. It feels a
lot better now that she is in her own room with very attentive people
taking care of her. Of course, everyone up there on the 7th floor
remembered her from last week, and I'm sure none of you will be
surprised that she has all these new friends. :) She feels very
supported by all the wonderful friends who called and emailed and left
messages. I know myself that I was horrified to see her last post and
glad I could go in to be with her. And getting all those calls and
having everyone reach out was amazing, especially for someone like her
(like us all, really) who doesn't like to ask for things. So now
she's looking forward to the possibility that the tap to get the water
out from her pericardial sac will help...my gut says that it will
(though I'm no doctor, of course...). It just seems like getting her
system 'unclogged' will at least allow things to get back into balance
and the water to drain from her system. So, she looks good and
she's being very cared for. Keep calling and emailing her. I can see
each email and call bolstering her up every time one comes in. That
being said, she forgot to bring her computer and phone chargers to the
hospital (d'oh!) so don't worry too much if you don't get through.
January 18, 2009 12:35 AM
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CarynRose
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Posted: Jan 18 2009 at 6:45am |
Heather (and friends),
Over 10 years ago, my dear friend had lung cancer and was on heavy duty chemo. Each treatment seemed to bring on another nasty side effect -- pneumonia, hand/foot syndrome, and often, pericarditis (fluid in the heart sac). The tap works.
As someone currently admitted into Cancer Treatment Centers of America in Philly with side effects from my own chemo, and a husband who has visited me twice in a week (and I had to practically beg for that -- after all, he has other priorities), I completely empathize with you. And you are right, now is not the time to deal with that. Thank G-d you have friends nearby who can help you. I don't and it means that I have to manage and advocate for myself (and I have brain mets slowing me down).
Heather, just shout out either here or on Facebook.
We love and support you,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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myjourney
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Posted: Jan 18 2009 at 9:36am |
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Thanks all of you. I am so touched that you all care so much. My hubbby came, and decided to try to fight with me. Other than that, he "had nothing to say." And he sat in the corner on his computer. I just kept saying to him, "i'm sick, I don't have the energy to fight. I need you to just love, care, and give me support right now." He was tired you know, from staying out late with his friend and eating a "fabulous" meal. Caryn, and all woman really who have men in our lives like this. When you are sick, you must put it aside. And just love ourselves and call on those that love us. Elizabeth, from Snohomish, thank you for tracking me down in the ER last night and offering to come. If Tamara hadn't been there, I would have taken you up on it. I write in my blog what a rock D is, but in reality he has been saying on a regular basis how much he hates me, and can't wait till I am better so he can get a divorce. Its awesome! But then, he turns and is all mr. nice guy. I never know what/or who I am going to get.
I again don't share how it really is on my blog, because many of his family and friends read it regularly. If they only new the monster he is. Its incredible!! I married a 12 year old. Not a man. This illness has shown me that more than anything!
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33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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CarynRose
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Posted: Jan 18 2009 at 9:57am |
Sweetie,
Don't swallow anything you want to share on the blog, even if his family is reading. The truth is the truth. And your husband needs to have his ears boxed. (Threaten to change the beneficiary on your life insurance policy??? LOL)
I know that my husband loves me and that he's very overwhelmed, but he thinks he's the only one who's having to go through this. He doesn't do what he does maliciously. I remind him that I was the primary caregiver for each of my parents while running our household, working full time, and taking care of him and when he was in Iraq, handling everything else including getting him his CARE packages. So, yes, not only to do I know what he's going thru, I know how to do it. I also know that the stress probably triggered my recurrence.
He keeps wanting to fall back on his 80 year old parents, but I refuse to have him let Mommy and Daddy (who live 150 miles away) do the heavy lifting so he can keep his life as normal as it used to be. He's going to have to figure out how to cook a meal for me, not only himself. He's going to have to make the phone calls that need to be made. And HE'S going to have to take time off from work (he has plenty of FMLA) to visit his wife.
I've done the best to provide help for myself, but it is very depressing when so many who are local are not available (or not willing) and I have to literally beg friends and relatives from far away to come and stay with me. I feel embarrassed that I don't have anyone close to me to be there. I know that if I were well, I'd be there for so many, and sometimes I wonder what I've done or haven't done to them that have people stay away.
I'm rambling...... sorry about that.
Heather, hang in there, one step at a time. Many hugs,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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cg---
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Posted: Jan 18 2009 at 10:33am |
Dearest Heather,
For the first time in your life...everything must be about you...just you and truth but not about saving face (his face). I know it is difficult to believe at this moment, but you are bigger than anything that can ever happen to you. Do not accept the rejection any longer, empower yourself. Since he has a negative emotional impact on your health that indirectly and directly impacts on your recovery...have him put on the "Not allowed to visit list" - it is done all the time. Do not accept any of his calls. Change your power of attorney for personal care - because DH's teeth should have fallen out when he said those things to you!. His behavior, his words all indicated - he is not to be trusted to make decisions regarding your medical care and well-being. Make your own arrangements to get home. Since he has not done anything positive for you - all else is a negative and detracts from your recovery.
You don't need him Heather....you are a strong, intelligent, beautiful woman that does not deserve to be treated this way.
You are not defined by any man...and certainly not DH.
Love and strength coming your way....
Connie
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