August 2011 Surgery Group
Comments
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Welcome Sheypres.....you have the record so far from dx to procedure! Way to go. The waiting is the worst for me. And I'm sure that is why so many of us are not sleeping! I have been taking Tylenol PM but have to go off of all of these pain relievers on Aug. 8 for a two week break before my surgery.
Thoughts and prayers to all of you,
Susan
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I'm behind posting here, meant to earlier. Had surgery yesterday, surgery went swimmingly I guess, anesthesia knocked a front tooth out, but woke up feeling fine when recovery girls were in my hospital room for an overnight, and unhappitly they did not know I was a mastectomy patient and couldnt use my left arm, and I was too drugged up to say anything, and they go and ask me to move off the gurney onto my bed. "Is this my room?" I said. After a yes and move on over again, it hurt so dang bad I said so, and it was bleeding all over the place.
They gave me pain meds right then in my I.V. Well, at 7pm, nurse was gone, I called three times to front desk to get my pain meds again, not to mention my real meds that help my busted back and bad legs and panic disorder, and I think it was the panic that sent me over the edge when they said it would be 9pm before I'd get my meds, and I tried to state my case when they deliberately hung up on me. And this is a great hospital. So, I freaked out, dressed, grabbed I.V. pole, and announced I was pulling out my I.V. if someone didn't, and Elvis was leaving the building. Despite persuasive ideas, I got away clean, signed a paper that had no other signature on there, altho a call was "in" for a doc, but when I called my surgeon's nurse this morning to find out more details on breast wound care, which I already knew most of it, she jumps into my case a little about maybe Medicare might not pay for surgery becuz I signed out "against medical advice," which I say I signed becuase I "got no medical advice"!!! I think they'll cover it, but if anything wild happens after this, then it makes more sense they wouldn't cover any of that, I suppose.
So, ladies, don't do as I do, don't leave before you're supposed to. And REALLY watch the arm your surgery is on, do not hesitate to ask for complete help in getting settled in those wonky hospital beds, and get it straight with your nurse as to any regular meds you take and when you expect to take them (morning, noon, dinner), and also while mine kept asking if I needed pain meds, when I finally needed them, she was not there, so just tell nurse at outset you'll be needing pain killers every four hours and that way you'll be covered if she wanders off like mine did. And don't call the main desk. They are not regular people. Just ask them to send your nurse to you.
But ladies, I am SO glad that boob is gone, had five months of chemo before this surgery, so annoyed. I guess we're entitled to be annoyed, altho I TRY to be kind. But we had to put our dog down day before surgery, of all things, it's been a hard bunch of weeks, and last of some chemo is still with me, but I heard five to seven weeks is the magic release..
On subject of sleeping, the pain meds kept me up until 12, then woke up at 3 a.m. Gee whiz. Been a stressed time, but chemo is over (I hope for good) and now surgery is over. So, I'm free to enjoy some freedom, hope my wrecked mastectomy wound doesn't get worse, and so now for a liitle freedom until the rads thing. My emotions are, however, all over the place, gotta go take a Valium.
TIGER BLOOD, when the anesthesiologist talks to you, he'll write the orders but probably won't wheel you into the OR, but tell him you are fearful of going under, so would he please put something in your medicine to make you happy when it's over. He'll figure something out. I've had good anesth and bad ones, depends on anesth doc, so it's good to tell yours what's up with your probs. GG
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nanadeb, I went through lots of insomnia kicks over the years due to peri-menopause and other issues. Perhaps I can help with a rundown of what worked for me :-). FYI, Ambian is known to be only good for initially getting to sleep, however, Ambian CR works throughout the night. Lunesta is the same way as Ambian CR. These are good for helping advert the 3:00am wake-ups. I really couldn't use them because I have sensitive body chemistry and experienced "out of body" experiences the next morning. Also, if you have depression (more then just the bummer type), these types of meds can cause suicidial thoughts.
Moving on to the next course of action... Ativan can help with falling asleep or if you wake up at 3:00a taking a small amount (like .25mg) can help get you back to sleep. I even found that the when I took .25 or .5 of Ativan in the middle of the night, it would take the edge off when I woke in the morning and my anxiety would be less during the day. The downside of these is that if you have an addictive personality/system you could get caught up in a bad cycle with benzos. I've always taken them responsibility and they have done wonders for me.
Lastly, I have found that sometimes putting rosemary (or any other scent that calms you) oil around the temples or under the nose, either when going to sleep or upon waking up, can also work if your mind-set is right.
Good Luck! Cancer sucks, but insomnia way sucks!
I
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WOW Dogeyed! You are one STRONG woman! I sure hope things get better for you. Can't get much worse after that hospital experience...jeessshhhhh! If that is a good hospital in your area I sure wouldn't want to be in the bad one.
Heal and rest,
Susan
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Wow, what a group already! I posted everyone's surgeries in my original post, please let me know if I missed anyone or got any information wrong.
I was admitted to the hospital on Monday with super low WBC. I am still here and anxious to get out. My oncologist hopes that I can go home tomorrow. I certainly hope so!
Speedy recovery to all who had surgery yesterday and good luck tomorrow Tigerblood!
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My surgery is scheduled for Aug. 12th. I'm scared to death. I don't do well with any medical stuff. I'm a big baby. I haven't been able to sleep as in my mind I've had the surgery over and over again. One night after I'd been told my surgery date, I dreamt that they started surgery then stopped and said oh, we can't finish until Aug. 12th!!!
The day I went for my biopsy, I knew... I asked what my bi-rad rating was. The nurse was shocked and said how did you know to ask that, then she said well you have a right to know. After we left the office, we recieved a call on the way home from a dr. saying that they found a mass on my husbands liver! He had gone a lung specialist, as he had pneumonia a couple months back, and was starting to have the same shoulder pain again. They had done a Ct scan on his lungs several weeks earlier. He ended up in the hospital for two weeks with a abscess on his liver that then also spread to his lungs and caused pneumonia again. He is home now with IV anti-biotics. The dr's were stumped by all of this. During that same week, my older brother arrived in Fl (where I live) and was acting very weird, he couldn't speak correctly. After a visit to the emegency room it was determined that he had a baseball size brain tumor, and he was operated on within hours. We were told 6 hours into surgery that he had a massive stroke, and wouldn't surrvive. He did, the dr later said there is no explanation for this, because from what he witnessed but the scans never showed a stroke, just profuse swelling. So I can honestly say that was one of my worst weeks ever!!!
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Hi All,
Yes, I am having much trouble sleeping and staying asleep at night. I have to start taking those sleeping pills again they help. I'm single too as I saw some of the other women here are and you do feel rather lonely going through this. I'm scared as hell when I let my mind drift but I quickly try to get it out of that thinking and think instead this is just progress and it will all be over soon and I can start my journey to healing. I'm so glad we have each other and we can post honestly here how we feel.
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Hi All!
I am frantically trying to get everything prepped before my surgery tomorrow. You know, birthday gifts purchased, sheets washed, bills paid....the usual stuff. Ha Ha.
I am so eager to get this step BEHIND me! I mean or real,,,,who would think that I would be losing a body part tomorrow? I laugh when I say this. My humor is slightly morbid. My father assures me that I am only losing fatty nasty tissue. Gotta love my dad,
I had to tell my 5 year old that I was losing my breast, I couldn't hide that nor did I want to lie to him. I thought about it carefully and said it will grow back. I said Yes, kind of! He was so okay with it. He has been awesome through all this. The only thing I has had trouble with was me losing my hair. He was a notorious hair twirler when we would cuddle together.
For my Ohio gals....I live in Cincinnati, right by Kings Island.
My BS says that UMX is one night's stay; however, the Pre-Op nurse says I could go home that evening. Fine by me...GET ME OUT OF THERE!
My surgery is an arrival at 5am and a 7am surgery time. All I can say is that they better have that IV full of coffee because I am nasty without it.
I will post soon. Requesting all your thoughts, prayers, and good vibes.
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Sending good vibes to you for sure Tiger_Blood, and hope they develop IV coffee too! I also have told my kids (4 & 6) about my surgery, but not sure how much they understand until it happens. I'm finding waiting to be hard, I just want to get on with things.
Wishing speedy recovery to all this week, and to you too blondelawyer! Hope the low WBC count recovers quickly and does not delay anything for you!0 -
I may have to stay 2 or 3 nights. Not sure yet. I see the surgeon again the 5th and register at the hospital that day. I hope it goes that smooth!!
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Blondelawyer~~~ My bilateral mastectomy is scheduled for August 9th. I have triple negative BC and did neoadjuvant chemo due to tumor size and me being stage 3C.
Tigerblood~~~ Sending you lots of well wishes for your surgery today! Did you get everything done on your to-do list? I kinda had to laugh at the list because I'm the same way. I've already been trying to get way too many things done prior to my surgery. Others have offered to assist me, but I know that if I do it all by myself, at least it will be done right...... or in other words, MY WAY!!
Thinking of you all as your surgery dates draw near.
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Hi all. I am joining the site today. I completed my neo-adjuvant chemotherapy. UMX with SNB is scheduled for August 16th.
Blondelawyer will you please add me to the list? Thanks.
Tiger_Blood I wish you well and hope you have a speedy recovery!!!
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Sending prayers and good thoughts to tigerblood.
blondelawyer...I was kinda wondering where you went.
Bless you...you poor thing...In the hospital
BOO !!!! Hope you get to go home today!!Wow dogeyed...sounds like you are glad to be home !!
Glad that is over for you. They knocked a tooth out? Oh my gosh !!!
Just what you needed on top of everything else
Flpinkwarrior and alamik...welcome to the August group.
I hope we all become great friends and supporters of each other thru this journey
rockym...thank you for all the great info. I will have to ask about the XL you're right. The Ambian puts me right to sleep...but I dont stay asleep long.
Will be very careful about taking Zanax. I really hate having to take any meds
Debbi http://atoosassygal.blogspot.com/0 -
Oh, Djmlmax, you have a lot on your plate! My dad was diagnosed with inoperable glioblastoma (brain cancer) less than a month after my cancer diagnosis, so I can relate somewhat...Giving meaning to "when it rains, it pours!"
I had a lumpectomy/node dissection 2 weeks ago, margins were bad, so 2 days ago I had a mastectomy. For those of you waiting on your surgery, I hope I can make you feel a little better by saying it wasn't nearly as bad as I thought!
I too am having sleep issues...I am terrified of Ambien, so I've been using Xanax. I am a lifelong stomach sleeper, so sleeping on my back just feels so strange.
Best of luck to the folks here who are still awaiting surgery.
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blondelawyer-thanks for updating our list. our group is growing daily.
tiger-blood-I am keeping you in my thoughts today. I am so with you on the to-do list. I have been scrambling all week but working on stupid stuff that could have waited. yesterday's project---digging the silicon grout out of my marble shower. it took all day to get that rubbery stuff completely gone. Treating it for mold and regrouting today. Now why would a sane person do that when their bedroom really needs clenaing???
dogeyed-what a horrible experience. How the heck did they knock your tooth out? I don't blame you for signing out. I hope medicare comes thru for you.
alamik-I am the day before you. Also a bmx. Supposed overnight stay but only if I have anesthesia problems.
I am worried that I have only seen my BS 1 time. Is she really sure of what I want? Did she take good notes when we hd our visit? I am having no nodes, no recon so don't leave extra skin, and leave my chest wall alone!!! Did she get all that? Will she come in the room before they knock me out? She also doesn't think PT is necessary. I have been watching the June and July surg sites and many of them ARE doing PT. Some of them are struggling iwth ROM. She also doesn't advocate for compression garments. These are just the thoughts running thru my head as I continue on my list of dumb chores-like cleaning out the inside of all y porch lights (8 of them). Nervous energy that needs better focus than I can muster. I went out to set the sprinkler and noticed a spider in 1 of the lights so dropped what I was working on to clean them. Now I am rambling on here about crap no one cares about-sorry girls.
I have my first Herceptin only tx tomorrow and a bi-phasic CT scan on Saturday.
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I updated the list everyone.
And I get to go home today! I am sitting here in my street clothes awaiting paperwork. I am SO glad to be going home. I am still anemic and my MO gave me the option of staying another day to have a transfusion or to address it on an outpatient basis (I chose the later). He said that because of my age (I'm 33) the transfusion is really up to me, but I am worried that if I don't have one it might mess up my surgery which is scheduled for the 16th (12 days away). The oncologist did say that we might want to do the transfusion because of surgery. I am not opposed to a transfusion--should I be? I think that I may call my BS and just tell him the situation and see what he says about the transfusion and then talk to my MO about it again next week at my follow up.
Good luck with your surgery today Tigerblood! And I hope that all of our earlier surgery gals are healing up nicely!
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Hi Everyone,
Just a special note to wish everyone well for their August 2011 surgeries. Today is the one year anniversary of my BMX/w TE. I had my exchange surgery in Nov 2010 and am doing well. I was very lucky. I was the one who started the August 2010 Mastectomy thread and I know the support system really helped me and everyone to cope with the diagnosis and surgery. I wish you all a speedy recovery and a special thank you to blondelawyer who started this thread for all of you. Good luck everyone! It is much better on the other side!
Nancy
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I've been enjoying ALL the comments here, bless all of you. I have shared many apprehensions, like getting bills done, laundry done before surgery. And then the aftershock, unexpected but was SO glad to get home and just goof off. That's all I CAN do.
BLONDELAWYER, I guess you know this, but I wanted my blood cell counts high enough before surgery, so I ate steaks and eggs, whateve protein I could eat, even got a frozen quiche and ate it since I was in no mood to cook, and husband made the steaks.
DGMLMAX, bless your heart and soul, your whole family is falling apart, and now you have to deal with your surgery. Why is it that when something major happens, all this other comes along.
NANADEB, I have thought of you often. Thank you so much for saying hello to me, and YES, they knocked out one of my front teeth, hard to believe, but them tooths been acting up becuz of a medicine I was on a few years ago, lost quite a few of them, wear a plate for my "apperanaces," so need to get another tooth attached to it now. I know my poor anesthesiologist as horrified, maybe he thought i wouldn't notice? Ha!
Yes, folks, it's been hell, lost my dog, lost my front tooth, lost my boob, but I HAVE MY LIFE. We have a second dog, Goldwyn, she's been SUCH a comfort and blessing after losing our boy. I love her so. I LOVED the comment by ROCKYM about using rosemary herb to sleep, I shall ask husband to get me some, Rosemary was the name of my best friend killed in a car accident at university. Oh, yeah, I am one of those big disaster areas, but when the good stuff is good, it's REAL good, we must all think of those days when we walk thru the fire. Friends always, GG
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blondelawyer, another thanks for updating our list. It's nice to have a specific forum/thread where we can directly go to and post, sympathize, empathize and tell it like it is.
lilylady and tiger-blood, I know the To-Do list well :-). I think I've accomplished more chores since my dx then in the entire year! It's a great distraction and something we can have control over. I may not be able to control what happens on 8/10, but I can surely set up my wireless internet to stream HBO downstairs to my laptop and then TV! I can also garden and plant so that I can watch something beautiful grow and forget about the growing stuff I can't control. I also was running around in 100 degree yesterday fixing leaks in my outside plumbing. Lots of accomplishments and that is really what I need right now. The more in control I feel over my outside life, the less I worry about what I can't control. P.S. All that hard work helps with sleep! Bonus!
lilylady, can you get in touch with your BS and have a list to discuss? I know I was worried because I didn't want to have a complete axillary node dissection and my pre-op papers said "possible ALND." I felt it was important to let him know how I felt before he cut me open and I would have no say. I was more scared of getting LE then cancer itself so I did get to clear that up with him rather than an hour before surgery. I don't know what PT and ROM are, but if there are any surgical procedures you don't want done, one lady on these forums mentioned to me that I can specifically cross off anything on the "consent form" prior to surgery. This way my wishes are met.
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PT is physical therapy and ROM is range of motion.
I am Stage IV with cancer in both my liver and lung-or maybe not-I will know for sure after the scan on Saturday. First scan showed 5 mets that ranged in size from tennis ball down to galfball sized second scan showed them the size of pencil erasers. my onc is fairly certain I will be cancer free on this scan. i am in a rare 2% group called oligometastatic-potentially curable Stage IV. I am 3 weeks out from my last chemo-the scan was scheduled so that the last tx could have full effect.
Anyway I am with you on the LE. I would rather risk the cancer back than lose the use of my arm-that I need to make my living with. It is a quality of life thing for me. I have agreed to rads because I refused node removal. They have never shown on any scan I have had. My tracheal nodes lit up huge but they never had any intention of removing those... so I said no armpit thing.
My intial breast tumor was 9cm and attached and grown into the chest wall. she had mentioned she hoped not to remove any of the chest muscle-I told her don;t worry about it-I am telling you no right now. Breast tumor iwas gone at mid=term scan and Rads will kill any of the little buggers still there.
Great tip about the consent form. I willl have to remember to take reading glasses. My BS is off on medical leave because she had a hysterectomy 2 weeks ago. She is coming in to do my surgery even though she is off for 2 more weeks. It is a favor to my onc-I am his pet and he wanted her to do my surgery. It has already been moved back once. I hope she is up to it for Mon cause i just want it done.
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RockyM and rjbaby69:
Its been two weeks since my surgery and I got a call from my surgeon today that all my margins were good. I had 1 out of 9 lympnodes that had cancer but she doesn't believe I should need any more surgery to remove more lympnodes. I had a chemo port put in at the same time of my surgery. Might as well get all done at once : P while I was knocked out
I went home after my procedure, just felt more comfortable being where I can relax. I found it easier to sleep in my recliner the first week. Then a friend of mine gave me this heart shaped pillow that fits perfectly under my arm so I can sleep a bit easier against my incision site.
As for my boob, it doesn't sound so full of water anymore : ) but it is extremely tender still. I went back to work today and realized that my arm was very limited in movement. Doing simple stretches~one I call the spiderman crawl has you moving your arms up against a wall like you are climbing up it is really fun to do.
Hope this info was a bit helpful good luck and a speedy recovery ladies.
Not really looking forward to going through chemo though. I'm a bit scared of getting sick but I've already gotten over having to losing my hair. Everyone keeps telling me you are only 26 your hair will grow back. I just want to yell at them~ well of course you can say that cause its not happening to you : )
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vinade45, congratulations on the margins being good and sorry about the nodes I'm a bit nervous about my surgery coming up. I'm scared about being slowed down since I've been actually feeling pretty good the past few weeks. The chemo is something none of us want. On the bright side... it looks like you won't have to do hormone therapy with ER-/PR-. Boy, 26 is way young. Did you have a strong family history?
People say the stupidest things in regard to hair, etc. There is a thread "What cheezed me off today" where we bitch about the things people say or the people we have to deal with. Check it out if you ever want a good laugh. People are strange!
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Rockym~ "You are way young" Thats funny, my aunt told me the same thing when I talked to her. She had it 15 years ago when she was 43, and its still in remission : )
I got tested anyway to see if I was positive for the BRACA gene test. It came back negative thank goodness. I think my aunt is going to get tested as well to make sure she doesn't carry the gene either.
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Lilylady ~ Hope your scan on Saturday gives you clear results! How great that will be.
Blondelawyer ~ Did you get WBC booster shots the day after each chemo? Glad you got to go home today. Hope your white count increases soon. Thanks for updating the list. I see we have the same surgery date.
I am very glad to have found this group. It is going to help me muddle thru the craziness of this dreadful DX. I see that each SE I am dealing with someone else has experienced and posted about as well. I am single and on this journey alone. My mom has come here to help me. She is here physically, and she has good intentions, but she just doesn't get what I am going through. Thanks to each of you for sharing!
Do any of you attend support groups in person? If so, have they been helpful?
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Hi TML. I'm sorry for what you're going through, and I know it can be overwhelming. I'm not an "official" member of the August group since I had my surgery July 12th. (No July group--hopefully I can be an "honorary" August sister.) I was diagnosed June 2nd, and put off the surgery in order to wait for results on a BRCA test, which I think is the test you are asking about. I was fortunate to be BRCA negative, but a positive result would have indicated a different surgery for me. Don't feel bad about advocating for yourself. Do research, ask questions and explore your options. Take lots of notes and if all else fails ask for your path reports and get a second opinion. It's your body!
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vinade45, glad you were BRCA negative! I am too and that gave me some reassurance for my 9 year old daughter's future. My 13 year old son is very mature and knows what's up, but my daughter is much more emotional so I didn't want to scare her. She thinks I'm going to the hospital to have a cyst removed :-). Actually, I'm not lying to her since my BS will take out the cyst my daughter touched between my breasts last week and she even asked me about it, so I'm covered for now. I've been told that 46 is young to have BC, so when you mentioned 26, I was like... wow... that totally sucks! I'm glad your aunt is in remission and wish you positive vibes from here on out.
SAB, Welcome. I was dxed around the same time as you and I also waited for BRCA results. I too wanted to be comfortable with all my decisions and understand everything before the BS lifted his knife :-). Heck, I even decided to take our summer vacation first because I didn't want to risk the chance of not being able to surf, etc. It's been 2 months and I'm now ready... scared, but ready. Congratulations on the Stage I and no nodes! Never thought I'd be congratulating someone on their dx, but your dx is the one I'm hoping for :-).
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Good morning....
I have been reading everyone's post. What I think has helped me a lot is knowing how 'not' unique I am - which is insane.
Update: I am moving my surgery date. Do not have a new one yet. Found out that I tested positive for the Estrogen/Progesterone, so that is a plus. I am leaning towards a double MX since I am a DDD cup, even though I have cancer in only 1 breast. I have spoken with a geneticist and after providing her all the information I could without actually doing it formally, she believes I have a less than 5% chance of being positive, which means that the likelihood of me getter cancer in my other breast is slim.
I am meeting with plastic surgeon to get his opinion on what I should do regarding the surgery (1 or 2) and afterward create a plan. Considering my size, I think it would be difficult to 'match' rather than 'replace'.
Anyone else have this issue? What did you do?
I also have decided to get a 2nd opinion, although I am fairly confident in the surgeon that I am scheduled with. I just would rather not have any "I should have done's" in my history.
Will update surgery date as soon as I know.
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My surgery date will be on August 15. I will have my pre-op tests on August 9th. They will do blood work, x-ray and MRI that day. Hope there will be no more bad news from this pre-op so that my surgery will go as scheduled. Otherwise the whole plan has to be changed.
Nobody asked me if I want to do bilataral or unilataral mastectomy before they schedule the suregery date. Only when I went in yesterday to talk with my BS and told him that I am struggling with the two options, he told me that "well, if you are thinking of doing bilateral, then we maybe have to change the surgery date, because there will be no enough time on August 15 to finish a bilateral." I am so surprised to hear that: why nobody asked my opinion at all and just went ahead to schedule the surgery as unilateral. ... Thus, I asked him to order the MRI for me at the pre-op tests, I want to make sure that there is nothing going on in my right breast. If unfortunately they indeed find something in the right breast, then I will have to reschedule the surgery date and ask for a bilateral mastectomy.... I hope the X-ray and MRI will come clean.... Too much unknowns in this breast cancer. So stressful with every decision to make...
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TML: I opted for BMX in part because of my large breast size--I'm DD. My BS said that it can be easier for the PS to start from scratch. He also said that it will likely be a year before I can have reconstruction, so I didn't want to be so lopsided for all of that time. I am also going to opt for much smaller breasts when I do reconstruction--good bye back and shoulder pain! I am trying to look at the silver lining and the perky new boobs I'll get from this nightmare!
About my WBC, yes I do get the shots after chemo. My doctor thinks that I just caught a bug and that is what caused me to feel so awful and my immune system had been wiped out. My counts are now in the normal range--yay--and I feel much, much better!
To all of you ladies that are worried about chemo, try to not think about it now. There is nothing you can do about it now and worrying doesn't help. I know that is easier said than done, but it is something I tell myself every day because I am worried about having to do more chemo after surgery. I won't lie, chemo did suck, but it is manageable. So if you do have to do it after surgery you will be okay. You will take it one day at a time and manage the side effects one day at time. I thought that I would freak out about the hair loss, but that has actually been a lot easier to handle than I anticipated. I still get a bit sad when I look at pictures of me with my beautiful hair, but mostly it is okay. I actually enjoy the ease of not having to take care of it. I have several wigs for variety and lots of cute hats/scarves from friends.
Hang in there everyone, we can beat this beast! Have a good weekend!
Lisa
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Thank you Rockym. It IS weird wishing someone stage 1/no node cancer, but I hope that's the news you get! Hope the surfing was great. I'm leaving for a quick vacation next week before starting rads this month.
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