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Can't sleep! So, hello :)

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kazzy View Drop Down
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    Posted: Apr 29 2012 at 1:13am
Sleepy.... but can't seem to get myself to actually sleep!

I'm new to posting on the forums, but have been browsing since October of this past year, and I figured this would be a good time to say hello. I am 37 years old and was diagnosed with TNBC in October of 2011. I found the tumor myself, went for a mammogram and ultrasound and it was confirmed to be breast cancer after a biopsy. It ended up being around 2.3 cm with no lymph node activity. Had a lumpectomy with clear margins, did chemo and here I am.

Just finished my last chemo 2 weeks ago... I think I was handling it ok until my "chemo nurse" called to check in on me today. It was so great to hear from her and I was so happy during the conversation... but I cried a lot after we hung up. I have no idea why. I should be happy I'm done with the Chemo course of my treatment but I'm just not, and am not sure why! Anyone else have this issue? ... I went off on a tangent there! Anyway, I just finished ACT and will go for radiation in a few weeks...

I thought I'd say hi. Hi! 
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 9:04am
Dear Kazzy,

Welcome to our TNBC family. You are not alone regarding not sleeping well, at times. And if you post at strange hours there may be someone up in the UK, HK or Australia to respond or often, here as well.

Sorry you had need to find us. I believe you will find our family authentic, caring and knowledgeable.

One question-have you seen a Certified Genetic Counselor and been tested for the BRCA mutation?

again, welcome and best of luck to you as you continue your treatment. Please let us know how you are     doing.

warmly,

Steve


Edited by steve - Apr 29 2012 at 12:38pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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rigatonismom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 9:12am
Hi Kazzy,
Sorry you couldn't sleep.  I had a hard time getting to sleep last night so I finally got up and took a Lorazapam.  That did the trick.  Welcome to the forum. 
 
It sounds like to are well on your way to having your treatment done.  That's probably what the crying part is about.  IMO, we get so wrapped up in our treatment, that there are parts of it that we miss...like your onc nurse.  Those people have had our lives in their hands.  It also puts you closer to "the jump off the cliff and try to fly again" time when our treatment is over.  I did the chemo, surgery and radiation schedule and then I started a clinical trial and I only have 1 more dose on the clinical trial and that is next Tuesday.  Then I go for my last monthly follow up onc visit.  That's a little scary.  No one will be watching me as closely as they have been for the last 19 months. 
 
For me the radiation was the easiest though it got pretty boring because of the daily treatments.  The worst part was driving to the facility everyday.  That took longer than the treatment. 
 
I went to a conference yesterday and one of the topics was chemo brain.  The emotional unheaval was one of the things discussed.  We are put in an unbelievably stressful situation and then pumped full of drugs that play with every aspect of our bodies.  We do go through a lot of upheaval both phsically and mentally. 
 
Again welcome and congratulations on finishing phase one and two of your treatment.  You are almost there, just hang on.
 
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 11:24am
Hi Kazzy,
Steve & Nita just told you everything that happens or should happen when we are this journey to wellness!  I had sleepless nights too.  I think I was afraid because there was no one watching over me and felt like I was just out there,hanging around, with no lifeline for a while, but that does pass and when we are at our weakest, that is when we are the strongest!  That is when we tend to reach out more and find the answers we need and the support that is so needed on this journey. 
 
WE are here for you and thank you for reaching out to us.  As Steve has said "we are a great support for each other." In many ways we have increased our family through this forum.  So dear Kazzy, you aren't alone for long.  There is always someone awake and there to reach out and say, I know what you are going through.  Take care and do come back with your concerns, wonders, and news.
Helen in Nova Scotia   Wink
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 2:34pm

Hello Kazzy,

Steve, Nita and Helen have already filled you in on your questions.  I just wanted to welcome you to the site and let you know that you are in good company.  None of us want to be here, but just the same, we are "One for all... and All for one"....  Please keep posting and let us know how you are.  This site has been a wonderful lifeline for me.
 
Remember... You are completely normal in what you are thinking and feeling.  I called it 'separation anxiety'...  These feeling we have, and can have for an extended period of time are something that all of us TNBC Sisters totally UNDERSTAND. 
 
Good luck with your radiation.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kazzy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 6:09pm
Thank you all so much for your responses! What a nice welcome :)

Yes, Steve! I did have the genetic testing done, mainly because I am adopted and don't have any family history. There was an additional genetic test done aside from the BRAC ones, and luckily they all came back negative for the gene.

I would have figured that this would be the easiest time for me - when in fact it seems to be increasingly hard, even with the chemo done. My relationship with the infusion nurse was really the best and I looked forward to seeing her each week! It kind of makes sense I'd be going through separation anxiety... I will definitely be taking some sleep aids tonight!

Tomorrow I have the radiation consultation and planning meetings with the radiation oncologist. I'm hoping radiation is easier than the chemo. Chemo and I didn't play well together!

Anyway, thank you so much... It's nice to feel like you "belong" somewhere during these times... Reading the posts and discussions on here while going through all this has been reassuring and comforting. I'm glad to be a part of it. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 6:45pm
Kazzy,

Sometimes at the end of treatment our fears are the worst.  It's feeling like you're on the edge of a cliff and the person holding your hand is no longer there.  It does get easier as time goes on, but we still deal with the anxiety.  I hope radiation for you is easy.  Mentally, radiation was harder for me than chemo.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kazzy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 7:01pm
Hi Donna!

Thank you. :) Can you tell me about your experiences with radiation if you feel comfortable?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 7:52pm
Kazzy,

Sure, I hope I didn't sound like such a downer.  I just reread my last post.  I had IMRT radiation, a different type than most women get.  It involved getting into a tube, much like an MRI.  I think the normal type of radiation is open so the claustrophobic feeling isn't as common.  That's why I said mentally it was harder for me.  Going into that tube every day was hard for me.  Now the first week or so I was tense and nervous.  By the end of treatment, I was actually falling asleep.  My time in the tube was much longer than most people.  At first when all areas were being radiated it was like 11 to 13 minutes.  Towards the end, it was just a couple of minutes.  My biggest side effects were fatigue and burning towards the end.  The techs all said how I looked great, which had me thinking what do people with severe reactions look like?  After I finished with rads, I ended up with a severe infection, which we thought might be radiation pneumonitis.  Antiobiotics cleared it up and the healing went well after that incident.   I think most other women will say rads were a breeze compared to chemo.  Wishing you the best.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote bearsilu2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 8:57pm
SmileHi there. i read your note and see that you are also adopted ...my twin and i were adopted too but she is the one with tnbc, not me. We are similar in age also. I was wondering if you work? How people at your job felt about you getting chemo. My sister had the worst time in the world over it. How long will you have radiation? I get the impression that radiation doesnt HURT it is just uncomfortable from what people and Nan say. Do you go to a hospital locally or in Mass...? Welcome
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 10:48pm
Hi Kazzy,

Welcome! You would think that we would all celebrate the last day of chemo, but I cried when it was time to go. The nurses were super, but I felt like I was stepping off the proverbial cliff with no parachute. Radiation was easy, through most of it. The last two weeks or so the fatigue started catching up with me. You are through the hardest physical part, the rest is the mind games that seem like they go on for years.

Hang in there, we are all here for you!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kazzy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2012 at 1:33pm
Thanks Deb, Barbara and Donna!

Donna, no, I didn't think you were a downer, I was just interested in hearing about your experiences. It sounds like you had a hard time, and I understand why. Thank you for sharing! My skin is super sensitive so I'm hoping I don't have any reactions to the radiation. I had a lot of nasty rashes during chemo, and allergic reaction to the cloro-prep that the surgeons used before my surgery, and my port placement. Actually because of the bandaging and the fact that they had me not shower for 2 days, I ended up with some scarring because my skin was so irritated under the bandages. Oh well, another battle scar!

Barbara, nice to meet you! I decided to take off work and have been not working since January when my chemo started. My start date for work is in May, and I can't say I'm looking forward to it. I'm looking forward to seeing some folks but at the same time I think it will be a bit difficult because I think a lot of people will expect me to be back to normal and I just don't feel that way yet. Also I ended up not wearing wigs, so I don't know how I will tackle the work thing...

Chemo and I didn't do well together, that's for sure. I had Adriamyacin and Cytoxin (Not sure if I spelled them correctly), and Taxol. None of them were easy. My work place was fine with me taking the time off, but it helped that my oncologist strongly recommended and supported it. When I expressed my concern about my workplace being ok with me being absent for so long, she said, "It's chemo for crying out loud!" And now I know what she was talking about! I'm sorry to hear about your sister - I'm gathering that her work place was less supportive?

Amazing, you being adopted and a twin! I think that's really neat! Do I understand correctly that you both have/had breast cancer?

I had my surgery and treatment through Dana Farber, but am having radiation locally in MA near my workplace - at Mount Auburn Hospital. It seemed more practical than rushing in to DF every day.  I will be working through radiation, so hopefully this will work out ok.

Deb, thank you so much, it's nice to know that I am normal and these feelings are normal. Sometimes I feel like I have ten heads to folks who haven't experienced all of this...
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