August 2013 Surgeries

OMG ndgrrl - as horrific an experience that was for you,  you gave me a much needed laugh with your story.  I hope your next experience comes up better than that.  I hear you on the gown - when I went for surgery they gave me two regular sized gowns. First I was confused because they told me to put the first one on & do it up at the back and then the second in reverse.  I'm only 4'6" & 100lbs (overweight because they bulked me up before surgery). But I've always worn kids gowns in the hospital.  I could have just worn the one and wrapped it around 4 times! Lol

Babs - great news about your daughter.  I hope you have a great visit. 

Question for everyone.  It's starting to get cold here in Southern Ontario.  Usually I'm an outdoors girl and cold doesn't bother me.  I've actually had to put the heat on and long johns, scarf and gloves when I take Dayton outside the past week even though everyone else is still just in sweatshirts.  Are any of you feeling the weather differently?  I know my immune system is in the toilet with the surgery and various drugs I've had to use in healing and stuff but damn I'm freezing!

Hey Ladies,

Having some problems w/feeling very sick to my stomach.  Not vomiting, but if I did I'd probably feel better - but I'm not shoving my finger down my throat!  Waited for my follow up call from infusion center to check up on me yesterday morning - no call. I finally called and left a message about feeling so sick to my stomach and the compazine was not working and both my legs were swollen (hadn't heard of that side effect so pretty worried about what that was all about). Well, I had to leave the house at 3:00 to get to clinic for my Neulasta injection and still had not heard from cancer center. Got home at 5:15 and sure enough, 15 minutes after I had left they called and left a message on our answering machine - just saying to call the clinic (not addressing my problems and I signed all the paperwork allowing all clinics and doctors to leave detailed messages on our home answering machine and to my husband directly). They close at 5:00 - so I got no answer yesterday and felt like it was unnecessary to bother a Oncologist on Call with my problems. I had the nurse at my PCP clinic look at my swollen legs (oh, I should let you all know I weighted myself before leaving and was at a wopping 124 pounds - there is no way I gained 5 pounds eating 2 muffins in the last 24 hours so I was convinced it was some sort of water retention issue). The nurse agreed when she looked at them and I told her the weight gain issue - advised I watch my sodium intake. Hell, I'm not watching anything - ate another muffin and some chicken nuggets - I'm just eating what I feel I can stomach and what is easy for my husband to prepare.

Well, having only gotten 2 hours of sleep the first night, I was in bed by 8 last night. Up at 2:30 this morning - terrible back ache. I have 4 pinched nerves in my lumbar spine so this backache is not unheard of but definitely worse than normal - could be the Neulasta to blame. So I got out of bed, took my morning meds and within 2 hours I want to throw up. This anti-nausua med just is not cutting it so I will contact the Oncologist on Call in a few hours and ask for something diff. I won't eat if there is any chance I might throw up - just won't do it (you all know what I mean...might be ok going down but.....). I do have body aches all over - again - probably the Neulasta but it's not so bad that I need to be in bed nor is it as bad like when you have the flu.  Headaches are wicked bad....could be part of why I feel so sick to my stomach; who knows.

Sounds like colds are going around, and some w/fevers. It is cold & flu season and there is a lot of viruses going around. I was taking an expectorant before chemo but MO said to me "your chest and lungs are clear so chemo will go ahead. It seems the problem is everything is stuck in the throat and since we can't cough it out, lets try drying it up". So we moved to Sudafed and it seems to be helping. That low grade fever I had was short lived. I've had no fever for the past 5 days so I was not too concerned w/the cold. But any of you out there who are running a fever, even if only low grade, check w/your MO or PCP to make sure you don't take something they don't want you taking. OTC meds can be very dangerous when mixed w/prescription drugs....please always check before mixing the 2.

Poodle-mum - your feeling cold I think is a reaction to the surgeries we've been subjected to. I, too, am sensitive to both cold and heat. I believe there is medical evidence of it (I may have read that somewhere along the way) but I couldn't tell you what it is. But you summed it up...our immune systems have been/are affected. And let's face it...we went from very hot weather to very cool weather very quickly this year. We didn't get a nice gradual easing into the current temps - it's been a strange year for weather.

How is your weight holding up?  You seem to eat so little - and I wonder if you were able to get more in you that your healing might speed up.  I did a little reading on how best to handle my extreme weight loss (which I'm really beginning to think was all related to the cancer growing inside me - nothing else made sense, doctors couldn't explain it away w/all the tests they were running, true-I eat less when I have my headache flares but that's been going on for 10 years so the weight loss in last 1-2 years really couldn't be explained).  Anyway....after reading and talking w/both my husband and daughter, who are both much more knowelegable about nutrition than myself, we all decided the best way to at least keep on what weight I had was w/protein bars.  So I stocked up on several different types (I've tried at least a dozen and picked out about 4 of the favorites and stocked up on them).  I've been eating them now since late Sept when chemo was supposed to start and instead of running to the vending machine at work when I get hungry, I reach in my purse for a protein bar.  It's obviously much more nutritious and I've gone from 106 lbs up to 116 at weigh in before chemo.  So 10 lbs is considerable considering nothing else had worked.  Just somethin you might want to look into.  It's good for you, several of the ones I eat are actually "meal replacement" bars so they are meant to "stick to your bones".  I'm not expert in any way about nutrition, but I can tell you it has worked for me.  FYI - I don't believe Cheetos count, lol!

Please do not think we believe anything of the sort about being selfish!  Poodle-mum, we all have different circumstances that brought us here, some of our diagnoses are worse than others, some are better, some had easier recoveries, some had drains forever, some had inexcusable medical care following their surgeries, and on and on.  Point is we are all different.  Any of us who may have, what you say, a harder time, are HAPPY for you.  I can't speak to how I would feel if I had a friend with the circumstances you spoke of and walked away with a small scar and very short recovery and treatement.  I can tell you this though...I might very well be jealous, just like you.  It's hard; we have been.....for lack of a more tactful term....mutilated by the surgeries we had to have.  And the recovery was often times hard and for some of us, long.  You and Wrenn I believe have had it worse than any of us and I don't blame you for feeling "bitter".  I think that's a normal reaction.  But you need to recognize it so you know where it comes from and don't allow it to affect your perspective on life.  We all got sick, we all had our surgeries which dramatically altered our physical appearances, we all suffered through our recoveries and have all had to turn down different paths in our treatments.  Nobody got off easy here, nobody!  Remember that - I don't think any of us think for a second that you got "lucky".  Quite contrary - again, you and Wrenn have suffered greatly with your recoveries and are far, far, from lucky!!!  I guess what I would wonder is this...that friend you spoke of who is back to her normal life....how does she speak of her illness and recovery?  How does she relate to you and what you are going thru?  How did her perspective on life and the disease of cancer in any form befalling anyone change her?  Do you see where I'm going?  I don't know this person, I'll not judge her so don't take what I wrote as that (I'm just letting my words flow but want to make sure they are not read in a way other than what I intend them to be).  But I wonder if she really understands what you have been thru, how your entire life has changed, how you must deal with the physical changes in your appearance, how nothing seems like it will be the same as it had been.  See, I think if she understood, you'd be picking up different signals from her and you would't be feeling jealous.  Just my opinion, again I don't know her and I'm NOT judging her; but it might explain why you feel the way you do.  And it's nothing to feel guilty about.  We go thru life picking up signals from others every day and formulating opinions of them or their ciurcumstances....we all do it.  But never really give it much thought unless it leads us to feeling those emotions we don't like feeling and then we start to perhaps overanylis (which I have probably done here so I'll just stop and leave it at that and some food for thought).

Jeannine - Wow, time flies!  Half way thru w/rads.....seems like you just started.  Of course, I'm not the one receiving it so that's all easy for me to say!  I don't mean it that way; I know it's no easy task.  You must be feeling good knowing you are so close to finishing (half done and now on the downslide); best to try to look at everything positively.  I'm very happy for you!

Wrenn - you know, I purposely didn't use any lidocaine creme because I had no idea if I would feel discomfort like others or be one of the ladies who didn't think it was much of a big deal.  Had I known the needle is "more like a nail going in" - that's what the nurse at my PCP said - it's a big needle! I certainly would have slathered up on anything to freeze the area first.  Ah well, as always....live and learn.

I do hope you follow thru on your letters regarding your original surgeon.  The care you received is totally unacceptabe, and have had long lasting effects on further treatment.  Not to mention the emotional issues that come along with all that!  What sort of reprecusions are there for that sort of care in Canada w/Universal Health Care?  What avenues do you have to direct your comlaints?  I'd want to make sure that surgeon were never allowed again to treat a patient as you were treated and to do whatever I could to make sure that happened.  Can't change what was done to you (but I hope you have avenues to be made "whole" again) but hopefully you can bring about change so nobody gets treated in such an abhorent manner in the future.

Don't get too nervous about the fever...but I'd call your MO and let them know.  It could just be from your cold but let the MO make the decision if they should look at you now to make sure there is not an infection from other sources causing the fever. 

Wrenn, don't be afraid of the MO approving chemo.  You can do chemo, you can!  If it reduces your recurrance rates, you have to wrap your head around that you can do it!  Remember, just because you read about the plethora of side effects talked about in the threads here does NOT mean they will happen to you.  Most probably won't, or if they do, they might not be such a bother to you.  You need to keep it in perspective - and there is truth to these types of forums often "concentrating" on the "bad side of things" - but that's a good thing!  Then we all know what COULD be ahead of us, but remember that word....COULD.  I truly believe this forum is a blessing but you need to take some things with a grain of salt, Wrenn.  Don't focus on the bad, focus on the Search and Destroy and manage the SE's if/when they happen. 

I'm not so sure I agree with your surgeons thinking on it being too late beyond 3 months.  We are both triple negative; and I had something lighting up on my PET Scan which I had surgery for 2+ months following BMX.  But even had I not had that surgery, I was told the chemo would kill the tumor if it was cancerous and we would remove it after chemotherapy.  So, that's a KNOWN concern of possible mets....and I'm not certain what made them decide to get it out prior to chemo, but I'm glad they did.  Yes, our cancers are more aggressive but that doesn't mean they can't be killed off, and they are w/chemo.  If there is too much concern in your case, might you ask for a PET Scan at your 3 month post op mark?  Then I think you and your MO will have a better picture to make an informed decision - what do you think of that?  I don't believe your MO could say that is an unreasonable request.....

Babs - that is such wonderful news about your daughter moving back to NY.  I am so happy for you as in your postings it is clear how happy it makes you to have her close by.  I know how you feel...I'd love my "little girl" closer to home but I knew once she saw the other side of the Rockies she'd be lost to us to that part of the country.  But it's where she belongs, it brings her happiness and is truly her passion so we are, of course, very happy for her.  Just wish it wasn't so far away...But so happy you have your's back from across the pond.

And that is great news about your 3 month check up!!

ndgrrl - you know what...????  I couln't have asked to read a more hilarious and truthful post as what you posted at a time I am feeling so poorly.  Yes, I was giggling thru it because you painted a very clear and precise picture and I think we all could relate to certain aspects of your experience.  You are a HOOT!!!!  What's with them putting you in stirrups and making you wait like that?  I've never been asked to be like that and would never have thought of anyone being told to be like that waiting for a doctor.  Really!  I'm always seated on the table when the doc comes in (in the future, don't let any nurse tell you that you have to be laying down and in the stirrups waiting for a doc - for goodness sakes - no wonder you have such an aversion to Paps!) and when the doc is ready, then I lay down and let them direct my back side where they need it and only then do I put my feet in the stirrups.  Not one second before the doc is ready am I going to be put in such a vulerable position - feeling that breeze on the Hoo Haa!  You're a brave lady looking at all those instruments - I avoid looking anywhere even close to that tray.  I don't want to know!  I know what they are, I know what they look like and know what they're used for but I don't want to see them right before they are going to be used, on ME!  No way!  I'd pick my toenails before looking at those things!  Not that I have (I know, it's the grossest thing I could think of but I'm not a toenail picker!)but you all get the point.  Hell, I've even counted the little holes on the ceiling panels waiting, anything but looking at that tray.  I know the experience was terrible for you but you turned it into a very funny story so please know I feel for your undue anxiety, I really do.

Thank you, dear, for the wonderfully hilarious and truthful story that we can all relate to.  It could not have come to me at a better time.  And I'll never put on another gown without thinking of Shamoo!!!!

KBeee - hope you did well at the Run for the Cure (I'm assuming you will not read this until after the run).  I hope your legs do not hurt too much; your a very strong wippersnapper, you are, to still be determined to run the whole 3.1 miles w/legs feeling like cement.  I swear, I wish I had one iotta of your determination and strength! 

When you are able to catch up with the posts here, please let me know the brand of Epicor you take....I'm really interested to try it.

OK - as always, I've chewed up enough space here.  Hoping everyone has a wonder autumn weekend and is feeling healthy and happy and determined to move forward in the routes we have been directed.  My thoughts and prayers are with each of you!

Kbee-so proud of you! I'm sure you were feeling all of those things! I walk each year for Support Connection. It's an organization that offers all kinds of support for breast and ovarian cancer patients. Since my Mom died of breast cancer 44 years ago, and my sister is an ovarian cancer survivor of 15 years, when she became involved in this organization so did I. It has always been very emotional for me but last year, after my diagnosis , it became even more so. The walk was just after my first AC treatment. To help me get through it, my entire family walked with me- including my cousin, who's like a sister to me and her children and grandchildren(including 2 babies)! My daughter made sure she was here for it as did my niece who lives in San Francisco. I cried most of the way-so thankful for the wonderful family that was willing to walk the 3 miles with me in the rain. So, I know how you felt this year-running for yourself too!!I

For everyone- I should have shared this sooner but if you ever need any information or support of any kind you should call Support Connection. All of the counselors are either breast or ovarian cancer survivors and I can tell you from personal experience that they are just TERRIFIC

Support Connection 1-800-532-4290

Babs

We had a Making Strides Breast Cancer Walk here in NH in a few cities weekend before last. In the town I walked in (Dover) we locally raised close to $100,000 which stays right there in that town/cancer center. It is amazing!

I was so happy it was a non-chemo week & I was able to do the 3 mile walk. I had several friends with me & it sure was a feel good day!

aweee... LIL big hugs....

Jeannine - actually I take Claritan daily for allergies.  I feared my system would be "too used" to it to help w/SE's from Neulasta...and it seems my fears either have come true OR I'm just one of the unlucky who don't get the benefit others get.

I have not felt sick to my stomach since waking up and having a bite to eat.  Keeping my fingers crossed that holds and I can get back to work tomorrow.

I have a questions, though, to those who have been thru chemo:  It was explained the "white ick" and thrush come after approx. 5 days when the lining of the mucus membranes begin to slough off due to the deadening from chemo drugs.  I have, from day one, begun the salt water rinse I was told would help and have been quite religious with it since I don't want any "white ick" - or thrush!  So...for how long do you generally do this rinse?  I mean, can I stop like at day 7 or 8 or before?  Or is this something you do throughout chemo to keep those problems at bay?

Lisa

I used Biotin mouth wash twice a day throughout my treatments and never had any mouth issue. Sorry for the SEs you're experiencing. I had major bone aches after my first Neulasta but then went on the Claritin so I didn't have those issues again. I understand that your being on Claritin for so long prior to this may have made you immune to Claritin's benefits. Is there something else the MO can recommend?

Sending you hugs and hoping the next treatment is a piece of cake!!!

Babs

Lili, it is the adriamycin that kicks you so hard and taking it is brutal on everyone. I did not want to discourage you about what you would most likely feel while undergoing chemo, but chemo week is hell week. Being queasy and not hungry is just a part of the misery of this entire chemo journey for most people. I have been where you are. The one thing you can hold on to is to remember that this misery will pass and that you are strong enough to endure it. Coming here for support helped me through many a miserable day.

Poodlemum, So happy to hear that things are improving. Looks like you are getting used to the slow change,

Hope everyone has an ok day. Lisa, I hope you were able to go to work and are feeling ok.

Since my newfound experience with food,  I almost feel "normal" again. 

The doc also reassured me this week that even though he wants the ultrasound and the possibility of going back in,  there is no rush because he said he was very thorough when he was in before.

I hope all you ladies going through chemo are still being able to get some rest and don't overdo anything.  The one thing I've learned is that it's a long recovery but eventually we'll get there :-D

Hugs to everyone ♥

Hi LiLi1964

how are you feeling today? It's so hard to try to figure what is a chemo SE & what is from that Neulasat shot. For me I think the worse SEs, the over all fatigue with flu like symptoms that keeps me down for days is the shot.

Hope you're doing better!

VintageGal

Wrenn, How did your appointment go today? I've been thinking about you.

Chemo number 3 is in the books. I feel good, but my legs are feeling more like they are made of cement. This started about 2 weeks ago, and has been fine for several days, but it worries me that it is hitting so much earlier this time...yikes! I did talk with MO about 4 versus 6 treatments. 4 is standard for most, and I am node negative and he has me scheduled for 6. I just wanted some risk/benefit info on 4 vs 6. He agreed to order the oncotype on the tumor (at my request). If it comes back low, we will decide based on side effects if 4 or 6 would be best. if it comes back moderate or high, we will go for 6. That was my request and it sounded fine for him. That makes me much more confident that the treatment will be appropriate. I will not know the results until my next chemo day. I am planning on 6; if it ends up being less, then that will be an early Christmas present.

I jope everyone is feeling well, healing well, and has a good weekend.

Wrenn, I am so glad to hear that your doc is still considering chemo. Healing thoughts continue to come your way! One thing I have learned working with lots of doctors i. lots of different settings is that there are some doctors that have big egos. They are usually brilliant doctors, but they know it, and if something suggested does not fit into their perfect box, they do not go for it. That is why it is so important to do your own reasearch. At the end of the day, they go home to their family. We go home to deal with our wounds, side effects, etc, and ultimately we have to deal with them. I'll give some examples in my experience today below.

I met with my MO today before my chemo ; the first thing I wanted to bring up was why he is doing 6 rounds instead of 4, and what the risk/benefit would be. The last round, I saw the physician's assistant, who could not answer any of my questions. His first question to me was, "Are we doing 4 or 6 rounds with you?" I resisted the urge to say 4! I said, "you planned 6, but I would like to discuss it." I said that I felt like we did not have all of the available information necessary to make the decision since we did not do the oncotype. When we decided on 6, we did not know that my lymph nodes were all clear; pathology was not back yet. I suggested that I was thinking if it comes back low, we look closely at side effects to see if 4 or 6 would be better. If my side effects are not bad... meaning things like neuropathy, which could be permanent... then we could go-ahead with 6, but if I am getting more muscle weakness and neuropathy, we would look at 4 since that could be devastating to my career. I said if it comes back moderate or high, then we try hard to get all 6 in. He thought that sounded like a good plan!!!! The odd thing is I asked at chemo number 1 if we could do oncotype to decide 4 vs 6 and he said, no, "we only use that to decide whether or not to do chemo, not to decide on the number." I am sure he does not remember that conversation, but I am glad that he is going for it. It is also interesting that initially he seemed against various vitamins and such, but each time I ask about a few more, he says, "absolutely that will be fine." I did not mention that most of them I have already been taking . I had read that chemo can contribute to osteoporosis, so I have been taking vitamin D and calcium recently (since I have been hypocalcemic in the past). I asked to see all of my blood work results today, so he showed me them...low and behold, my calcium numbers were low (which no one mentioned) but had come up. I asked about the low number, and he said, "you ARE taking calcium and VitaminD aren't you?". Um...no one told me to!!!!! I was glad I did it, but I did research it thoroughly first. Crazy appointment, but I came out much more confident.

Wrenn -I'm with you and that is why I got a new MO. The previous one didn't want to share anything with me and I just knew I couldn't deal with him.

Wrenn, Glad you found someone too. I have had a few struggles but none like yours. Sounds like you may be back on track and I'm glad your sister went with you. My hubby goes with me and I really appreciate the moral support and the second set of ears because I sometimes forget dates or things I want to clarify and he speaks up if I need him to.