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CarynRose
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Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
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Posted: Jan 19 2009 at 4:29pm |
According to Heather's status on FB, the fenanyl each hour seems to be helping.
Thank G-d.
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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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Posted: Jan 19 2009 at 4:45pm |
Caryn,
Did she or whoever is posting on FB say if they were going to do another procedure to get all the fluid? A liter is quite a bit, and they did not get all of it.
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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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549
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Posted: Jan 19 2009 at 5:42pm |
Good evening Heather and hope things are improving. I am wondering if the Fentanyl could also be effecting your nausea? I can understand the pain how awful you have had to go thru this.
I know morphine and I never get along, sometimes those heavy pain meds don't set well in the tummy. Just a thought.
Hope you are home soon,
Hugs Pam
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Stage 2 2003
Stage 1 2007
BRCA 1+
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krisa
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Joined: May 21 2008
Location: Portland, OR
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Posted: Jan 19 2009 at 6:08pm |
a co-worker watched as her son had fluid around his lung aspirated and she almost fainted because of the pain her son was in from the procedure.
heather hasn't said on FB or her blog what is next.
i am wondering how her situation got to this stage.
i hope her friends and family are able to see her and give her the love and support she needs.
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myjourney
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Location: Seattle, Washington
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Posted: Jan 19 2009 at 7:44pm |
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Hey ladies. I am writing after another dose of fentanyl. So many great questions, and I will address them all down the road, when I can. This got to this point because its so rare to see a systemic fluid problem. None of the Oncs at the hosptial I'm at have seen this, and honestly my Onc has only seen it once. I had been complaining for a few months, and its got worse so gradually that he thought I was just fighting a cold.
They do not want to give me a diuretic because they address only the fluid in the limbs. This would cause my heart to have more pressure, because it would have to pump harder and they don't think that's a good idea. So they did the tap, on the right lung and heart. My Onc came in tonight and said we are going to see and do another ultra sound, or x-ray not sure which I can't remember, and see if the fluid in my left lung is less. Which is possible because the steroid they have me on (solu-Medrol) is helping me to pee a lot. My heart has drained another 50 CC's today and that is good. The steroid is for lessening the inflammation around the lungs and heart. I think that addresses some of the questions. I am feeling okay. My right lung just did a spasm thing and started hurting. Which is good because that means the fluid is out of there and its rubbing. I am on the up and up, and will be better soon!! Thanks for all your support. My hubbies Dad, called me today and is really (the other dad that wasn't the one that I wrote about on my blog) upset with him. He has a call into him, but hubby hasn't called him back. : )
Edited by myjourney - Jan 19 2009 at 7:45pm
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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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Joined: Jul 23 2007
Location: Altoona, PA
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Points: 3814
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Posted: Jan 19 2009 at 7:45pm |
Krisa,
It got this way because her doctors allowed it to get this way. Heather was filling with fluid for a long time and they wanted to just wait and see if it would go away on its own. Well, it didn't and they did nothing. Of course she has had no one to advocate for her either....no one to care about her...which is quite evident by the fact that "D" had dinner plans and was not concerned about her.
Her nails are so infected, that she had her fingers wrapped. Apparently she has a fungus infection. How could they have allowed it to get to this point?
Either she or someone else was on earlier this evening, but they didn't post. Perhaps Tamara was just checking and reading the posts to her. Bless her dear heart. Someone had better step up and start caring for her.
This is why every woman needs someone to speak for her when she cannot. Lori's husband would have never allowed her to suffer this way. NEVER!! Where is her father or her sister? Unbelievable. Do they even know what is going on? Was someone with her when she had that procedure done? No one has said.
Heather we love you!!
Nancy
Ok...while I was writing this, you Heather, were writing the above post. Good to see that you are doing better. Who was with you when you had the procedure done sweetie? Apparently not "D"! We are only worried about you and only you, but I still do not understand your doctors reasoning and will check that out with someone I know who is in the medical profession.
Again....much love and many hugs,
Nancy
Edited by Nancy - Jan 19 2009 at 7:53pm
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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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Joined: May 21 2008
Location: Portland, OR
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Posted: Jan 20 2009 at 5:58am |
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from heather's blog:
I have slept maybe a total of 30 minutes tonight. I have been on lots
of steroids and with the pain I have been in, I am wide awake. At 2:30
they finally dosed me with lot of IB proferuen. THey think the cathader
is poking my heart or somewhere in there and causing me pain. Its hard
to tell whats going on with your guts. I would have never thought I had
as much water in my lung as I have, and I honestly would have not
imagined any water around my heart. So, I am wide awake getting OBAMAED
up. I called Gen, since she is 3 hours ahead. The IBproferuen
helped take the low grade pain to the curb so now I am just up on
steroids. I'd have them give me a sleeping pill, but once I realized
what was happening to me, it is now the time for everyone to start
making their rounds. So I just ordered a small breakfast and maybe that
will help me get sleepy. I am hoping they pull the liquid off my
left lung today. Since they keep saying both lungs have about the same
amount, and now that I know how much was in the right side. I want the
left side tapped so that it can heal quicker. But I don't know the
protocol with doing both and the heart within a few days of one another. I
can feel my body besides all this doing better. My blood counts are
getting higher and that makes me happy. Soon, this will be a distant
memory all you Survivors say. I can't wait. Yesterday I had a few dear
friends stop by. Margie, Lea, Sarah, George, and D stopped by after
work. They kept me company and helped talk me into a nice sleep. It
reminded me of when I first was on AC and Gen was in town taking care
of me. I'd have her just talk, and talk she would. She would tell me
every story and thought under the sun until I fell asleep. I'll
write more later in the day. Once whatever is going to happen happens.
I doubt I will go home today because I still cannot stand up and walk a
few steps to the bathroom, use it and walk back, lay down without being
in such pain that I need fentanyl. So well see..
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krisa
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Joined: May 21 2008
Location: Portland, OR
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Points: 1090
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Posted: Jan 20 2009 at 6:10am |
i don't understand placements of catheters and why it could be poking heather's heart? is this her port? a lesson for all of us......if you complain of breathing problems and pain in the heart and lung area, don't let your doctor have a wait and see attitude-have it checked out thoroughly. heather, glad you are OBAMAED up; it means you are feeling better and won't miss the inauguration! it is a big day for all of us-i love the protocol and pageantry we have in the transfer of power.
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CarynRose
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Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
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Posted: Jan 20 2009 at 6:42am |
Glad you are feeling a bit better Heather. Hopefully, they'll be able to tap the left lung and maybe premedicate you so you don't have to suffer as much.
One day at a time. One step at a time.
Love, 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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peach
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Joined: Jun 22 2007
Location: Georgia
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Posted: Jan 20 2009 at 2:40pm |
Hope you have a good night and you're back to your sweet self soon.
Pat
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Dx 5/07 TNBC
IDC Stg.2, Gr.2,
Sentinel node 0/1 BRCA-
Lumpectomy,Chemo(AC-T DD)Rads
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krisa
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Location: Portland, OR
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Posted: Jan 20 2009 at 4:36pm |
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from heather's blog:
"Well...MY TUBE IS OUT OF MY HEART NOW!! Yippee! The cardiologist just
came by and though I got 75 CC's off the heart the past day, he was
nervous about keeping in the tube because of infection. So, he pulled
it out. The ultrasound showed no fluid around my heart and so he felt
confident with this decision. I am thrilled. I have just gotten better
and better today. And the funny thing is is that everyone the past day
have remarked that my hair has gotten longer. I love that I get to be
vain again soon. I can just feel its around the corner. I had a dream
the other day of putting on mascara! I just got hopefully my last
life dose of fentanyl for the procedure just now. I still don't know
what my Onc's decision is going to be with pulling the fluid off my
lung. I am going to ask him to do it because I much rather be forced to
lay in here and get better faster for the next few days then go home
and slowly get better. It is really hard and nearly impossible for me
to not "do" things around the house. When grocery shopping is too much
of a strain, ect. My friend Keiko is flying from SF on thursday to be
with me over the weekend. I am looking forward to having the help and
love around. I've known her for years and she is so much fun. The kind
of fun I have had to forget about and put away under the rug. But soon,
when the frogs are ribbeting on Vashon I will be pulling that rug back,
and throwing it into a bomb fire on the beach, and beginning my new
life."
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Terri
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Joined: Nov 12 2007
Location: FL
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Points: 578
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Posted: Jan 20 2009 at 4:49pm |
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Yea!! It`s so great that you are doing better!! And I bet your hair IS growing that quickly! It grows fast once it gets going. ;) That`s funny you dreamed about wearing mascara-I had a dream like that too! You will be wearing it very soon, although you are beautiful without it!! Have a restful night and a better day tomorrow.
Hugs, Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Terri
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Posted: Jan 20 2009 at 4:50pm |
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Kris, Thankyou so much for the updates.
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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CarynRose
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Location: Robbinsville, NJ, USA
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Posted: Jan 20 2009 at 5:28pm |
Heather,
So glad to hear that things are looking up. It's good when you can have procedures, even painful ones, that fix you quickly. Once the fluids are gone, you'll be surprised how much better you'll feel.
Here's to back to normal!! Here's to good friends who make you laugh and take your mind off cancer.
Lotsa love,
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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krisa
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Location: Portland, OR
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Posted: Jan 21 2009 at 5:09am |
terri, you are welcome! here is the url for heather's blog http://heathersjourneytohealth.blogspot.com/ she is having her left lung tapped and she is happy about that.
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NancyJane
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Joined: Aug 25 2008
Location: Key Largo, FL
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Posted: Jan 21 2009 at 6:44am |
Heather:
It is so good to hear the recovery in your voice! Hang in there, sweetie! You are so strong and have made it through so much. I can see the clouds parting and the sun is starting to shine  !!
Much love to you,
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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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Nancy
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Location: Altoona, PA
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Posted: Jan 21 2009 at 7:11pm |
I am posting Heather's blog from today...there are 3 entries and the bottom one is the last....than heaven that fluid is all out sweetie. It is a miracle that you were even able to breathe with that in there.
Have a really good night Heather....sweet dreams 
Love,
Nancy
Do you remember those aluminum coffee makers that had the clear plastic bubble on top and you can look at it spurting and brewing? That is how I feel this morning. Heather is percolating. I can feel my spirit coming back, and brewing deep inside me. My happy level, or my spirit, or my soul, or my joy is starting to warm up, and I just get hit with tears of joy..not bawling. Just a few drops here. But mainly it just feels like home. Home in my own skin. And this, I guess is where the grief is, because now that I am typing this, I am crying again. But a little more than just tears. I have just really really really truely missed ME. Me, had to go some place, and I can't wait (my tears are dripping down to my chest) till this is all gone, to go and get her. Its something only I can do, on my own. When I feel safe to do it. I mean, I have an Advance Life Directive on my table here in the hospital. It is the mature thing to do, to have a will so that my Sis and D wouldn't have to decide to what to do with me. But, my naive 33 year old, 7 1/2 months ago self, wouldn't have it on my table at home. I would have put it off. It reminds me of the day I got diagnosed, and the first surgeon I met with asked me if I had one, and if I didn't I should get one done. She is right. And this is needing to be done out of that not safe place. I have a few big hitters for goals for myself when I come out of this. One is that I do not allow myself to live in the future, one of the life changing lessons of cancer, and not think about, "my stats for the next three years." I do need to spew about it every in a while, because it is scary. All the other breast cancers have medications to treat what their cancer feeds on to keep it at bay. But mine doesn't. And that is why I did so much chemo and rads, being just a stage one. A stage one, that had a deep BC that went 1 cm into my pec mmls. That is scary to me. That it just wasn't in my boob. That it had traveled into the muscle. But that is where I have to stop my mind, myself. So, I haven't cracked that damn book, but will. Maybe over a cup of warm tea. When I am all done with my treatment in a few months. For those of you that don't know this, I am a tea whore. I covet tea. I sniff and drink tea, like the hipsters do these days wine. I have stopped drinking tea since chemo, because I love it so much that I didn't want to risk hating it when I am done. But I will make my will and my what if scenarios, just in case, the chance happens.
Yippee! Well, first I have to laugh out loud with a good chuckle that I am actually excited to have a doctor stick my intercostal muscles with lidocaine so that they can get a catheter in between my ribs to pull liquid out of my left lung today. But I am thrilled. My Onc just made his daily appearance at 6 am and said that he and the cardiologist decided this was the best approach. I said, "Yeah, make into a leaky water hose." I'll stay in touch later today. But the good news, is that my heart looks great, he said. And I am going to start getting better soon.
I feel so sick to my stomach right now. They just pulled another full freakin' liter off my left (my other one) lung. It hurts. Defintely a different feeling this time. We got it all out, well..they leave a little so there isn't friction and tears. But my poor little lung. I can feel how squished its been. Now its trying to open back up and it hurts really bad. It makes me sick to my stomach. I don't like feeling my guts.
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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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CarynRose
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Location: Robbinsville, NJ, USA
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Posted: Jan 22 2009 at 2:54am |
Heather,
You are percolating life and spirit and it is inspiring to me. I keep saying: I'M IN HERE! I'M IN HERE! And so are you, beyond the pain and the reinflating lung.
Heal and you'll be home soon.
I too have to do an advanced directive and have to think seriously about how gets my health power of attorney. As much as I love him and he loves me, I don't think he has it in him to make the types of health decisions that need to be made at end of life. I'm leaning more towards my brother, even though he has so much on him at this time. Who'd have thought that I'd have to be making such decisions at 48 years old.....
Much love,
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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Joined: Jul 06 2008
Location: Seattle, Washington
Status: Offline
Points: 211
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Posted: Jan 22 2009 at 4:29am |
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Its an honour for your brother to be there, in I believe the biggest way possible. When I watched my mom pass over a week. We never left her bedside (oh this should have been my first clue that D was not going to work. He got incredilby selfish and didn't want me to "be different" he was so upset that I was upset and he wasn't there for me at all, at all, at all) anyways.....ask your brother. That will relinquish the guilt I hear in between your words above.
Love,
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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msm082455
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Location: United States
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Posted: Jan 22 2009 at 7:34am |
Hi Heather!
Your friend Tamara said, you may need some "phone" company. I have been following your story and am so saddened by it. I wish I could help. But, if you'll allow me to, I'd love to call you and just let you vent, vent, and vent some more.
I know you are in Swedish Medical Center, Room 705, but for us Pennsylvanian's, that's like being in Russia. :-) (Just a little attempt at humor). So, if you'd like to vent to a total stranger, I'm up for it. If not, I understand. Just know that my thoughts and prayers are always with you.
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Michele,PA,55
Dx 8-04,IDC, Gr.3,3 CM
Lumpectomy w/SNB,9-04,clear margins,Triple Negative
4A/C,4TA,Rads, BRCA 1 & 2, negative
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